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Their Final Performance: ProtestNICE4ME

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THEIR FINAL PERFORMANCE

1.1.   Who better than those who profess to know minds to twist our actions? Those that have plundered the void to plug with their confidence (tricks). To keep those of us blighted by secrets locked tight in our cells bombarded by their (un)veiled attacks. To call us the aggressors in their pursuit of (ego) advances by the belief of their Lie? To play powerless in their stories, and clothe themselves in the torn robes of their victims? 

1.2   What a alluring fantasy world they want us to inhabit! The monsters are real if we would just admit that, inside. 

1.3   Who better to run scared from the bitter cold of a scalpel. To whisper to friends in green rooms and wood-pannelled halls. To find the willing and the weak (like them) to cling to their fables? 

1.4   Who better than you to think your eminence means anything? Who better to finally fail as your tales of the expected, that still curl eagerly around inky fingers, that feed your full bellies (and wallets), succumb to irrelevance and crumble around you. 

1.5   You are forced from the spotlight. Truth now takes the stage. 

***

I have not had much opportunity or available energy for poetry lately. What is in the tank has been reserved for supporting people with Myalgic Encephalomyelitis otherwise mislabelled as Chronic Fatigue Syndrome. I’ve been making my voice heard and amplifying voices of others as well as taking consciously chosen rest to recover energy expended. I have also deteriorated since my last post finding that sitting upright without my neck supported was causing me to feel dizzy and sick until I lay flat. That is also not conducive to the writing experience.

Last night though, after some inadvertent caffeinated tea, I was awake until 2am reflecting on today and the planned protest at NICE (National Institute for Health and Care Excellence) against the pausing of the ME/CFS guidelines on 18th August. (See previous post) The impact of this on people with ME is difficult to quantify. We feel lost, betrayed and abandoned and we are struggling to understand why. As happens in a void stories circulate. Those who have a vested interest in keeping the status quo have worm tongued their way into willing media articles, some more vile that others, in perpetuating the myth of the biopsychosocial (BPS)model of treatment. NICE and the ME Charities have stayed quiet, no doubt trying to do the right thing, but unfortunately this gives these false narratives time to take root. Those who have dominated ME/CFS with psychological bias will feed journalists with stories of patient activists attempting to neuter their victims and make sure our voices are silenced by their attacks. They will, being experts of psychology, know exactly how to turn the tables and blame the victim, attempt to diminish our lived experience and rebrand our sense of injustice as mental delusion.

I will not play that game any more. I will wear my patient activist label with pride.

This poem is for them. I called it Their Final Performance as, even though they are more adept at storytelling, they know their run on the stage is over. NICE have seen the evidence, we have seen the evidence, and it can no longer be written over with activity journals and poor illness beliefs. It is shining through, as truth always does.

It is also our time in the spotlight today at this protest. We will be noisy both in person and on-line. We will be there to show the real victims of harm, to tell our stories, to make it known their theories have no place in our treatment.

Evidence over eminence. Your time has come.

***

A special thank you to Steve Topple and Nicola Jeffrey at The Chronic Collaboration for organisation this protest today through pure kindness and desire to help. You are absolutely heroes to me. I can’t thank you enough. For more information about the The Chronic Collaboration and the excellent journalistic work of Steve Topple please click here

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GET Lost

CAUTION: I am fairly new to this kind of advocacy so apologies that I published this before adding this caution. This blog post contains real experiences of people who have been harmed by a therapeutic intervention known as Graded Exercise Therapy and the stories could be upsetting and may trigger feelings of trauma, loss and other difficult and painful emotions. The M.E. Charities listed below have helplines available to support anyone in need. Please comment below or DM me on Twitter @Kirstiewrites if you need help and I will do my best to put you in touch with someone.

***

People with ME/CFS have been harmed, some severely, by Graded Exercise Therapy or GET as it is known.  GET is based on the belief that people with ME have been de-conditioned by not exercising because of a long-term illness so all they need is to start increase their level of exercise to recover. In built in this are some dangerous assumptions as to whether is M.E is a psychological illness where symptoms are exaggerated, or patients, mainly but not exclusively women, are not be trusted with their own lived experience. In some places this is the same argument that is being used for Long Covid. The problem is that ME is a condition that is exacerbated by exercise so the outcome is akin to prescribing cake to a diabetic.

NICE (The National Institute for Health and Care Excellence) finally cottoned on to this with the help of clinical experts and patient feedback and today they were meant to launch new guidelines on the diagnosis and treatment of M.E. Yesterday afternoon though they decided to press pause. We don’t know why for certain but we can guess. 

Those that promote GET, and have built their careers and reputations around it, are pushing back using connections in the media and in high-placed roles in royal societies and professional membership associations, and have launched an offensive against the guidelines and, by extension, people with M.E. They continue to paint us as hysterical deluded activists who have even issued threats of violence and death to those who were trying to help them. (Classic blame the victim propaganda that was unfounded, see previous post). They try and show us as a group committed to a particular outcome regardless of the facts. However the facts in this case are that the the research into the efficacy of GET has been considered to be of low value and there are many patient testimonies of how people have deteriorated after GET. Moreover each day, thanks in part to the focus of Long Covid, also a post-viral condition, more biomedical research is taking place and securing funding to explore and measure such things as the impact of inflammation, changes in blood and in cells and how multiple systems become dysfunctional post-infection.

If that all sounds unnecessarily confusing and unhelpful, let me make one thing clear:

GRADED EXERCISE THERAPY CAN HARM PEOPLE WITH M.E.

This is why it is so important for us to keep the pressure on NICE to release the promised guidelines and remove GET alongside its companion CBT, as treatments for people with M.E. There are many in the community who have been called into action following the news and I am also trying to contribute to that action as much as possible.  Yesterday I put a call out on Twitter for people to share their stories of GET so I could collate them into one thread.  I am not alone in this as there are other requests and campaigns going on regarding GET too.  I am listing and referencing them all here:  

Medical Abuse in M.E. Sufferers (MAIMES)

StopGET campaign (@stopGETteam on Twitter)

Dr Hng’s ME/CFS Friends (Facebook Group)

Journalist and writer Tanya Marlow (collecting stories to submit to NICE)

Why stories?  Why not the medical evidence, analysis from medical professionals, scientific papers? If the last few years have shown me anything it is the power of stories over facts. It is much more interesting to hear, view, read a story that evokes emotions than reel off a list of dry facts. The facts are all there if you want to look and NICE in particular have been transparent and comprehensive in showing all their sums. But those who fiercely oppose to removal of GET and CBT are well connected with a willing media who love a good story, love a bit of skewing of perspective to benefit their readership (circulation and impressions) and happily use lying by omission and glossy photos (usually of weary white young women on a sofa holding their head) to sell the story they want you to hear.  Well, we have stories too. Powerful, visceral and shocking stories. I just told mine and there are at least 250,000 stories in the UK alone.  So please, if you can, share your story if you have experience and/or have been harmed by GET. You can comment below, DM me and I can share your story as I have done here below, anonymously if you wish. Or share where you think it will have the most impact. This blog post is just one of many places you can speak out. The ME Charities will be happy to hear from you too. (See list below)

We must fight this outdated theory that we are causing and prolonging our own illness and amplify our voices anyway we can. Theories like health anxiety, secondary gains and fear of exercise belong back in the 19th century along with professors who espouse it. 

GET stories (Thank you to all of you who have shared)


“My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education. Just also like to add that the physiotherapist stopped GET when she saw my daughter deteriorating and the paediatrician agreed with her decision. We kept activity charts when doing GET and the physiotherapist could see from the charts the harmful impact exercise was having on my daughter. The charts showed a clear pattern which was much easier to visualise than if we had just talked about it”


“My dear friend died an assisted death last year, having developed ME &POTS following a medical procedure, after a lifetime of chronic pain/fibromyalgia. Dr Luis Nacul was consulted on her case. He said hers was a terrible case, but there was nothing at all that could be done. The harms include a lack of biomedical research which has resulted from this guideline, influencing other countries. She didn’t want to die. #StopTheHarm #StopGET @NICEComms. The lack of knowledge, support or understanding was devastating in itself. She tried everything. She was tortured by unmanaged pain and symptoms. It was horrific. We need biomedical research. BPS have blocked it.”


“I went to Bath CFS clinic in 2016. I didn’t really know anything about ME then, I had vaguely heard that GET was bad. But the clinic didnt call it that. They called it activity management or pacing. They told me to slowly increase activity over time. Worksheets said to avoid rest during the day. Instead of rest I should do restorative activities like reading or yoga. I now know that reading and trigger PEM and are not restorative in ME. My children were then 3 and 4 so I was already doing quite a lot while being ill. The first 2 appointments I went to Bath Mineral Hospital to see the OT, but by the 3rd appointment I was too ill to get the train so I had phone appointments every few weeks. I was encouraged to keep walking my son to school even though I kept collapsing. It was one of my ‘targets’. After about a year I could hardly walk and the cognitive symptoms were much worse. I told the OT I felt worse and she just said I could do the course again from the start!”


“My daughter has lost all of her teenage years to ME. No school, no friends, no life. She could still manage school prior to treatment, but deteriorated after vigorous physiotherapy, hydrotherapy, sleep hygiene, GET, Activity Management. In the end she could barely walk or talk.”


“I was diagnosed with mild ME when I started at the ME specialist clinic in surrey. Whilst receiving GET advice by the psychologist providing (supportive not curative) CBT, I deteriorated, and before I was discharged, the psychologist upped my classification to moderate in severity. I have a letter from them saying as much, that I gave to work when I had to retire. The psychologist was actually very supportive, but did not know GET was harmful.”


“I became sick with ME aged 12 and was made worse by GET as an inpatient in hospital, forced to try and exercise and bullied to push past my limits. I was disbelieved and so were my parents, i was made out to feel my physical limitations and suffering were a result of anxiety and ‘fear of doing things’. Receiving GET and being treated so badly was one of the worst times of my life. I didn’t manage any education, was bed bound, tube fed and still use a wheelchair to this day. GET made me worse. It’s taken me until I’m now 32 to be able to tolerate being upright and have some times of a ‘normal life’ although still hugely consumed by ME.”


“I have previously written to the GMC about it. They can’t claim to not know! I was walking and working. After GET i needed a wheelchair and eventually collapsed with severe ME. I didn’t end up tube fed though was on death’s door. My story should still count. My GP records should in theory confirm most of my history. I’ve been unable to work since. NICE are playing a nasty game!!! They cannot expect sick and dying patients to have to evidence their illness at short notice!!”


“Alistair Miller: ‘CBT and GET are all we have.’ My local fatigue clinic wrote to my GP saying I ‘didn’t want to recover’ – when I’d been ill 15 yrs. My GP said she’d never had so many complaints about any clinic as that one. It was less than useless. I’d take nothing over that. The letter from clinic was sent to GP as having done cbt/get before with no improvement, I asked clinic for input with pacing only and they insisted I had to aim for recovery – when I had been mainly housebound for 15 years.”


“#MECFS #GET harmed me for decades with relapses in bed for 6 months losing me jobs/career. Age 40 I relapsed never recovered enough to work again. Read in a book age 45 that GET causes relapses I realised each one was just as I was at my fittest then crash”


“Years ago I was a part-time university student. I walked across campus. I studied. I even stayed up late some nights with friends. My ME made it incredibly hard, but I could engage with life. This all changed when I did GET. They told me, “This will help”, “This is safe”, “You may feel like this is too much, but push through. This will not harm you.” This was all so, so wrong. Every day I followed their instructions I was injuring myself. The more I attempted the less I could do. I lost my ability to walk. To study. To spend time with friends. Everything I envisioned for my future became impossible. ME didn’t destroy those dreams. GET did. I was so happy when I saw the NICE guidelines were changing. Finally, people with ME will stop being maimed. So this delay really hits hard. I am heartbroken for all the people who will lose their independence, aspirations, or lives because of this. And I am angry for them”

Added: 23rd August 2021

“I went from being able to walk and work part-time to being unable to work and needing a wheelchair because I was pushed to walk more than I could. I think GET is not delivered safely in most places, and is unsuitable for many people.
I have been under the care of NHS ME/CFS clinics for years, and my experience is that the clinicians knew less about the condition than I do, and their advice has been sloppy, inconsistent, often unsafe, often contradictory. I really haven’t found these clinics helpful. What I have found most helpful has been being under the care of a GO who treats my individual symptoms, and under a consultant who specialises in autonomic nervous system dysfunction. The ME/CFS clinics completely neglected my tachycardia, gastrointestinal, bladder problems etc.
The only improvements I have ever had have been through medications to help with pain, sensory sensitivity, postural tachycardia, stomach and bowel problems, catheters for bladder problems, and more. None of this was done through the ME/CFS clinics who didn’t even have a doctor.
I feel like I have been failed by these clinics. I went 9 years suffering with lots of symptoms, not knowing there were medications and other things that could help with them, because these things weren’t even known about or discussed in the ME/CFS clinics. That’s why I want
the new guidelines to be published now. Because I don’t want other people to go through what I did – 9 years of preventable suffering is gruelling, especially at such a young age. I had hundreds of CBT & counseling sessions – great for mental health but made no difference to my ME symptoms. Actually the exertion of attending the appointments made my ME worse. I have tried approaching exercise is all kinds of ways, gentle and otherwise. I find that I can’t increase my threshold of what I can tolerate. Medications reduce my pain and discomfort though.I just don’t think behavioural methods alone are anywhere near sufficient for managing this illness, and often they are frustrating, distressing and harmful. I’m not saying certain psychological and behavioural things can’t help with developing coping strategies, but for me they aren’t treatments, just coping strategies. I wouldn’t be here if it wasn’t for medication which makes my symptoms more tolerable. I think we need a more biomedical approach to treat symptoms themselves, and eventually underlying causes. Behavioural is so insufficient.”


***

If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites.  It can be alarming when this happens especially if you cannot express what is going on inside you.  Please know that whilst it can feel isolating you are not alone.  There are thousands of us, millions worldwide that understand what you are going through.  And people like me can help.  If you need further help or have been offered CBT or GET as part of your treatment please contact one of the charities and organisations that provide help and support you to make the right decision for your health. 

M.E. Association

Action for M.E.

#MEAction Network

Also for other fantastic resources that have captured both the harms of GET and the reaction of the NICE guidelines please check out

Tom Kindlon’s Pinterest collation of GET stories

Sissel Sunde’s Reaction to the NICE scandal

Danni Watt’s article re the NICE guidelines and GET stories

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ME and the Virus that had never really gone

(This is the third part of my M.E story. If you haven’t yet, I’d recommend you read parts one and two, here and here.)

In the early part of 2010 I packed my bags and headed to Peru. I had decided to have one last adventure before hitting my forties and quickly found myself 3000 miles away and almost 3,500 metres above sea level working with a small volunteer organisation doing anything I could to be helpful. (That in itself is another story for another time). M.E. was still something I referred to in the past tense and during my time there I thrived.  There was something about living at altitude and the combination of the thinness and the purity of the air that invigorated my body and it worked better for me than it had in years. With a willing body I was able to climb mountains, dance at bars, spend all night talking with friends. I drank what I wanted, ate what I wanted, lived how I wanted, and from what I can recall, there was little payback. There were moments – altitude sickness on arrival, stomach bugs, a cold, a fainting spell, some musclo-skeletal pain, but nothing like I had experienced before.  When I came back to England and back to sea-level I felt like I had developed what I called “Peruvian super-blood” and remember walking up the escalators at Holborn and not stopping once to let the movement carry me.  I had never been that physically fit in my life. 

Sadly, this very normal phenomenon for anyone returning from altitude faded within a few weeks and I went back to my pre-Peru baseline.  With that came the cold bugs, the sore throats, what I thought was bad luck and jokingly referred to as an allergy to England, which I realise now was PEM (post-exertional malaise). Then a month after I had returned I woke with a weird rash from top to toe.  I went back to my GP and, without testing and despite me returning from another country, he declared it a viral rash of unknown origin that should go away in a few days.  It took about a week but it did disappear and life carried on.  So did the usual sore throats and cold bugs which, looking back on my Facebook updates, were appearing around every two months.  I didn’t bother going to the GP about these; I knew if I did they would be considered the usual URTIs (Upper Respiratory Tract Infections) and that “bug going around”. I remember a friend (no longer) who would declare how I was “always sick” so folded that in to the story of me. 

2011 was much the same but came with an added twist.  There were more cold bugs and sore throats every few months but at the same time I was also experiencing digestive issues every six weeks or so –  dehydration, upset stomach, irritable bowel. Back to the GP and this time I scored lucky with one of those mythical helpful, supportive locum GPs (the ones that appear and disappear like Brigadoon) who recognised that I had brought back a souvenir from my travels – a microscopic parasite.  A couple of nuclear-strength pills later and my stowaway had gone and back I was to the regular rhythm of the URTIs. 

You must know what is coming.  You must see it by now.  Well maybe you don’t because I didn’t and it is only from this lofty position of almost a decade later where I can see the obvious plot point that was developing. 

Around November 2012 insomnia, which had always had a presence in my life, moved from a monthly occurrence to weekly to one day where I was awake for 30 hours straight.  I knew then what this meant although I tried to deny it. I had crashed. Relapsed. The M.E. that I had convinced myself had gone or at least disappeared to the depths of my system was back, front and centre. My energy was gone, my thoughts jumbled, the musculo-skeletal pain had intensified.  Twelve years, in my mind, I had been “free” from M.E. and now it had captured and imprisoned me again. Once I had battled with my mind, which was intent on refusing that this was happening, I decided that I would do something about it.  Once and for all. So I made an appointment to see my GP.

“What you need to do, Kirstie, is get your heart rate above 120 beats per minute, three times a week, and lose some weight.”

I had really hoped that the treatment of M.E patients had moved on.  Surely the days I had experienced back in the nineties were over? Surely now with the news I had been following about biomedical research and possible bio-markers would mean my condition would be seen differently?  

Sadly, people with M.E reading this already know the answer

I had told my GP about my lack of energy, how any time I tried to exercise I felt worse, how I couldn’t think straight or process information, how I was putting on weight, that I could no longer work and was mostly housebound, and, most importantly, I needed help. His response above shows how much he understood, or cared. I complained immediately to the Practice Manager (who happened to be his wife) and surpisingly that worked. I was offered a referral to an M.E specialist of my choice at a London Fatigue Clinic.  

Early 2013 I met the lead consultant who ran the Fatigue Service, part of the Infectious Diseases department, at the Royal Free in Hampstead. I was heartened by the fact that the Fatigue Service was part of an InfectiousDiseases department so that must mean they don’t think it’s in my head right? The consultant ran tests and spent a very pleasant hour and a half with me talking about my medical history. She told me I had raised ESR, CRP and Rheumatoid factor, and low-iron binding capacity.  She was concerned about my history of fainting and that others in my family also fainted.  We also discussed undiagnosed heart disease and the cardiologist that thought I’d had a heart attack. She said that the medical profession didn’t know what caused M.E but her theory was it was related to trauma that I was still holding onto. She also told me her colleagues had concerns about some “patient activists”  who had harrassed M.E specialists and even issued death-threats. 

I didn’t have any information to the contrary, nor was I involved in any M.E groups or communities back then so I didn’t question whether that was an accurate depiction of events. (It certainly was not and there are court proceedings to prove it)  Now, however, I have to ask myself, why would a medical professional who was responsible for my care need to tell me that at all?  What did that have to do with my treatment?  

Not knowing this, I left the consultation feeling happy to be heard and excited about being treated at last with something that would allow me to get back to my “normal” life. I met her again a month later for a follow up and then waited to hear next steps. And waited. And waited.

And waited.

It took over a year for those next steps – a year, monthly chasing telephone calls, a complaint, a further complaint. Mid 2014 I was called into the clinic by another member of the Fatigue Service team, not the lead consultant, and offered one of the only two things they could offer – GET (Graded Exercise Therapy) or CBT (Cognitive Behavioural Therapy). What happened to those strange terms like ESR and CRP, all red numbers on my blood tests, no-one seemed to know. This was it, take it or leave it.  

I had already researched GET and had heard from others that I knew with M.E. that this therapy was problematic. I didn’t know at the time problematic in this sense meant dangerous and harmful as it has turned out to be for people with M.E. especially in its more severe form*, but I was cautious. I was also much better by then having moved back to my baseline some months before and, really, I could have just asked to be discharged from Fatigue Service, but I decided to choose GET and see if the therapy would help me strengthen my body so the next relapse may not be so bad.  

I feel so lucky and relieved that when I had GET my M.E was mild. I also feel so thankful that I had researched what this therapy could do too. The relationship I had with my therapist was mainly positive, likely because she didn’t push for me to do more when I was reluctant, and she did give me some helpful physio exercises for my hypermobile joints. It became more of a catch-up session of what I could do in the moment rather than a programme of increasing my exercise levels. I knew it was part of her job to get me to do that. A career in HR had given me insight into how she would be managed and monitored herself. She did try setting me goals such as going for a run, high levels of intensity of exercise e.g. yoga and she showed me clinic-produced documents about secondary gains and deconditioning. But I had the increasing concerns amongst my friends with M.E about this treatment as well as the personal experience of exercise making me worse so I only did what I knew I could handle.  After my set number of sessions I was discharged. 

A month later I received a feedback form asking me to rate whether GET had helped me. I did not complete it. Other than a nice few chats with an empathetic and kind physiotherapist who to me looked like she had set instructions to follow it had, like most of my experiences with the medical profession and M.E, helped a sum total of not at all.  I had recovered back to my baseline through my own actions the previous year which had been, as it continues to be, to stop, to rest and to pace.  

I’m not going to go into the rest of the decade in detail as my M.E. journey continued over the next few years with the usual periods of remission and relapses maintaining a mild to moderate stance. I found complementary therapies that helped me manage my condition such as cranio-sacral therapy and Five Elements acupuncture and I continued to meditate and eat as healthily as I could. I was able earned income from part-time HR work. I set up a business until I couldn’t anymore as my M.E symptoms and relapses progressed, and started writing instead. I thought I had found peace in the rhythm of it to some extent settling into the acceptance that this would be my life.  I didn’t bother GPs with any more M.E. symptoms and relapses knowing there was little point and that after twenty-five years of attempting to get answers they were unlikely to come. 

But what I did do, that I am not proud of, is allow those medical professionals to seep into my consciousness and make me question my own mind.  Each time I relapsed I didn’t look at whether I had exerted myself or whether I had fought off an infection, I looked to my mental health instead. I looked back at whether a trauma or a life event had hurled me into such a painful space that my only choice was to pretend to be sick.  I gaslighted myself. I bought into the bullshit that this was something I could control with my thoughts.  I never looked back, as I am now, over my journey, to see the exceedingly obvious patterns of sickness, the test results, the lack of care, the omissions, the assumptions, the arrogance. The ignorance. Instead I was a willing participant in patient blame, shamed and ashamed of my condition.  

When I woke up on the morning of 28th March this year, post-jab, feeling like I had gone back in time to the day I came down with glandular fever, I finally knew how wrong I was. I knew categorically and unequivocally that my condition had been caused by and prolonged by a virus that invaded my body in 1989. That infection, or in the current case of a vaccine an artificial response to an infection, had created an immune response which in turn created intense inflammation throughout my body in multiple systems. My body was now attempting to find balance by borrowing from other systems causing further symptoms that create further imbalance and round and round we go.

So, no, this is no co-incidence of traumatic life events, health anxiety nor is it being run-down nor a cry for help. It is a disease of biological origin. It lives in our cells not our minds and so needs biomedical research not exercise mats and running machines. It needs a medical cure not a positive thinking. And whilst it might go away for while, it might change in intensity, it will be there. That damned virus that never leaves.

***

If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites.  It can be alarming when this happens especially if you cannot express what is going on inside you.  Please know that whilst it can feel isolating you are not alone.  There are thousands of us, millions worldwide that understand what you are going through.  And people like me can help.  If you need further help or have been offered CBT or GET as part of your treatment please contact one of the charities and organisations that provide help and support you to make the right decision for your health.

M.E. Association

Action for M.E.

#MEAction Network

Note: My condition relates specifically to a virus and my story arises from the experience of that virus but that is not the case for everyone.ME/CFS can also be caused by pathogens/external forces other than a virus such as but not limited to bacteria, parasites, mould and surgery. The common theme is something that causes a drastic immune response and inflammation. Part of the frustration people have who live with M.E. is that there may be different conditions all living under one roof. If you cannot trace your symptoms to a virus you may still be diagnosed under the M.E or ME/CFS banner. If you need help in understanding this the charities can support you. Or feel free to comment below and I can help where I can.

And finally if you have a personal story about GET and how this impacted you I am collating these on Twitter with the hashtags #GETstories #GETharms #StopGET. #StopGET is the hashtag used by the #StopGET Campaign who have the Twitter handle @StopGETteam. As soon as energy permits I will publish these on a blog post on here.

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Mission 2021

Image reads:

Mission 2021:

If my liberty means the incarceration of others, I am not free.

If my prosperity means the poverty of others, I have no riches.

If my success means the failure of others, I have not achieved.

If my wellbeing means the sickness of others, I cannot heal.

Until we are all fixed, we remain broken.

***

An Aquarian wish for Leo goals

Featured

FreeDumb Day

Happy

Foolish
Rhetoric
Expedites
Excess
Deaths
Of the
Masses

Day

19th July, #FreedumbDay is trending  and England has dropped all restrictions. The pandemic is over here as our Government said so. Or rather that is the subtle message that is carried on its waves. They have also told people to take personal responsibility and use caution but since it took charging 10p a bag to get us to stop using so much plastic, I am not my characteristically hopeful self that this is piece of the puzzle we have been missing.

What they are not saying, or not saying loud enough, is the consequences of our freedom will be brutal. The true price will be even more death of loved ones, someone’s loved ones. This will be a price we can start calculating from day one as it will be evident; numbers will be tallied on clinical websites, names will be displayed on commemorative walls. The additional price which we may not be able to count for years to come is those that will develop Long Covid and be given the potential life sentence of an M.E diagnosis. People who will lose jobs, friends, hope, drop out of society, become another statistic and add to the Millions Missing.

What chilled my blood when I read it was the post from the ex-special adviser to No10, Dominic Cummings, which showed a question scribbled with frantic fingers on a whiteboard:

“Who do we not save?”

I just knew that meant people like me, people with M.E and other chronic conditions, the elderly, the poor, the economically unviable. It would also mean those that become economically unviable too, those that would contract the virus and either lose their lives or their livelihoods. Those that may be blissfully unaware that this fate lay ahead for them.

I never thought I would live in a country that would be so cavalier with our lives though, where the elected government would calmly provide us as the answer, as the sacrifice they were most willing to make. A government that has traded on words not deeds, where rhetoric rather than action has handed them a majority and intergity and honesty are no longer values of choice.

I am truly terrified of what the next few months will hold for us, the deaths and catastrophe that could have been avoided. What we can do about it I don’t know. We can only raise our voices and protest as loudly as we can. For some of us that means raising our digital voices and speaking out online. For some we can but offer ourselves as witnesses to time. 

This poem, in the form of an acrostic, is my witness. It’s the headline that won’t be written but the words, the utter and absolute tragedy is that these words, are likely to be the real outcome from this day.

***

If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites.  It can be alarming when this happens especially if you cannot express what is going on inside you.  Please know that whilst it can feel isolating you are not alone.  There are thousands of us, millions worldwide that understand what you are going through.  And people like me can help.  There are also charities and organisations that provide help and support too:

M.E. Association

Action for M.E.

#MEAction Network

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P/o/EM

The Kings Library at the British Library, one of my sacred spaces. Photo: K Sivapalan 2018 Free to use

I wrote the poem below twelve days ago now. People with M.E. (Myalgic Encephalomyelitis) will recognise the play on a familiar term we use in my title – PEM, which is short for Post-Exertional Malaise. This is a time when M.E. symptoms intensify – the feeling of having no energy, heavy limbs, exhaustion and depletion, pain and numbness, lack of co-ordination, and in the case my poem here, brain fog, which is a term used to describe cognitive difficulties such as processing information, putting things in order, finding vocabulary and short-term memory. It can last hours, days, weeks or for some with severe M.E, it can become their life. PEM comes after someone with M.E. has over-exerted themselves in some way, or as I often refer to myself, have over-done it. That could be anything from walking a little bit further than normal, doing more household chores than usual, reading or working on a laptop (in this case for me it was indeed that) or disturbed sleep. Stress and anxiety can also bring about PEM as these states take a lot of physical energy and can drain our energy stores very quickly.

I set myself a challenge to write during PEM, specifically brain fog, rather than when the experience had subsided. I wanted to externalise the feeling as best I could through poetry. As a writer access to vocabulary, word-form and structure is essential to channel and evoke inner feelings. It can be alarming when I go to access the information, as you would say a book in a library, and it’s gone, or it’s been replaced with a completely different book, or the book is now in a language I don’t understand. Sometimes whole stacks have gone and sometimes access to the library is blocked completely. There are techniques that can help such as describing the word, like my own internal parlour game, finding nearby words as we do when looking for a word in a second language, or finding a way of being comfortable with the gaps and working with what I have. But there are also times when it is impossible, nothing works save for resting and waiting until the library opens again.

I have left this poem as I wrote it when I wrote it, typos included. It has taken me since then to find the energy and cognitive space to put this post together. I still don’t feel like my flow is completely back, the library is still not in order, but it is an improvement on before. Maybe this is all I can hope for right now and maybe the point is not to write perfectly but write as I am, as all that I am, M.E. and all.

***

P/o/EM

I can’t find my keys/notes/words
They are mesy jumbles. Filed in wrong places/spaces. Empty stacks, no labels

Stumbling limbs. Need to put on socks.
Trying – did I climb a mountain though?
No I washed some dishes. And spoons. Then lost them. Lie down again

A thousand pins in my head trying to create right sentences.

Aches, flashes, pulls, scratches. Cells forming against me. Dense/stubborn/ mule that won’t budge

Where did it go? Lifeforce/energy/me

Exhausted now. Thumbs ignoring commands.
Tratiors.

***

If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites. As I said it can be alarming when this happens especially if you cannot express what is going on inside you. Please know that whilst it can feel isolating you are not alone. There are thousands of us, millions worldwide that understand what you are going through. And people like me can help. There are also charities and organisations that provide help and support too:

ME Association

Action for ME

ME Action Network

Love and light

Kirstie

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M.E and the virus that went away…for a while… (maybe)

(This is the second part of three of my story of M.E.  If you haven’t yet, I’d recommend you read part one here)

2nd Edit: Oops. I managed to forget a very significant event in my life, or maybe block it out, due to my desire to finish this piece and rest. I’ve added it now. See below.

It’s twelve weeks since I have my first dose of the Corona virus vaccine, and I am still not back to baseline. 

Baseline, by the way, is a term people with M.E use to describe their average level of functioning as opposed to “normal”. There is no normal for those of us with mild/moderate M.E, just a weak level of well we have accepted as the pinnacle that we will attain. My needle has moved towards this baseline now but still nowhere the level of well I have become accustomed to. Still, I need to be grateful for a hopeful direction of travel.

Once upon a time in my early thirties this baseline was much higher.  In fact it would difficult to spot the difference between me and all those “normal” physically functioning adults out there. Because for some still unknown reason my M.E symptoms disappeared.  I am not sure how many people with M.E have a tale like mine of an underlying virus that goes dormant, comes back repeatedly, and then goes so far deep underground you would assume that it had gone. I am reminded of volcanoes and their unpredicable eruptions here. Some volcanoes erupt regularly and others, well, some think they are extinct until half of a mountain blows off without warning.  Quite an apt analogy for M.E if you ask me.

I have many theories as to why my M.E symptoms appeared to go away, one which is definitely not Graded Exercise Therapy (more on that in my next post). In 1999 when the worse relapse of my life so far occurred I did absoute opposite to exercise and slept for as long as I needed and rested for as long as I could.  I began to deepen my understanding of spirituality and began to explore different spiritual practices, including meditation, and one that was gaining traction in the West at the time, which was mindfulness.  I stopped. I rested. I paced. (These three phrases will be very familiar to people with M.E)

I continued like this until late 2000. My baseline improved over time away from moderate M.E back to mild. However with this change of fortune in one way came a change of fortune in another and I had my first miscarriage.  Following a period of physical and emotional healing I radically changed my diet, continued to rest and pace as well and delve deeper into spiritual explorations. 

Side note:  None of these factors I am describing are cures for M.E nor do I believe that having the right diet and lifestyle will magically improve the circumstances of people with M.E.  If you have latched onto that, then wait until you read the whole thing. Also do not forget from part one that I am currently experiencing a relapse due to a vaccine that imitates a viral infection not unlike the initial infection of glandular fever when I was 18.  

A nutritionist had me on a ton of supplements at the time. I had been told by a friend of a friend about a condition called Candida Albacans that may or may not be causing my M.E symptoms.  I decided to explore this possibility, as many people like me have done so before –  Yes, we’ve seen it all.  We have tried it all.  Some helps, some doesn’t but as of yet I have not seen anyone cured by the “have you tried x,y,z” approach to resolving this complex, multi-systemic condition  –  I did have some success with the change of diet alongside the other elements mentioned above and, by the Summer of 2001, I felt what you might call “well”.

I got a job in London in HR.  I started to have my twenties in my thirties (Still had not quite learned that lesson of behaving like an adult just yet). I started to use M.E in the past tense.  Sadly I don’t have any journals now from those days so I cannot accurately say whether that was actually the case or not but I do recall during those times days in bed too tired to move, sore throats, sore joints and fainting spells but I decided that was just normal stuff, you know the one where people say “it’s a bug going around”.  Well I caught a lot of these bugs but I still proclaimed M.E was no more. 

I maintained this position until my mid-thirties.  I studied crystal healing, felt I found the answer to life (otherwise known as spiritual arrogance) and likely became one of those “you can make yourself well if you just believe” people.  Those of us in the ME/CFS community know people like this well. They pop up on Twitter and Facebook as people who have recovered using mind-body techniques evangalising their cure as the cure for all.  I sometimes give them the benefit of the doubt because I’d been there myself.  Enthusiastic, passionate, wanting people to feel as good as I did (by denying when I didn’t feel good).  It’s the same energy as that happy couple who must introduce their single friend to another lost soul so they can have inhabit the same space of bliss.  Or my parents when they gave up smoking.  Evangelising from the perspective of one is neither healthy nor helpful.  All you serve is yourself and your ego.  And I was about to get a visit from Karma to remind me of that. 

2007/8 things started to change. To go back to my analogy, the volcano has not yet erupted but was bubbling below, sending up spits of lava now and again. I had caught a few “flu bugs” that year. I had thought nothing more of them and attempted to shrug them off. I had left the stress of a full-time job behind me, set out on my own to start my own HR consultancy and was loving it. I was single, living with one of my best friends and out and about attempting to be glamorous and sparkling like some London version of Carrie Bradshaw without the shoes (or the fashion sense).

On one of those nights out in oh-so-trendy Shoreditch I was talking to my friend and my throat started to close.  It hurt my chest to speak, not an out of breath feeling but more structural – bones and muscle.  The specialist I saw described it as a “band of conscription” around my upper chest and upon examining my the top of spine declared “oh I do not like that”. And then, as before, a sum total of nothing happened.  Apart from learning new terms such as “pectus excavatum”  and presentations such as “deformity of upper anterior chest wall” and “marked angulation at the very top of the thoracic part of the spine” nothing changed.  Oh and I also learned that my heart was literally not in the right place, pushed slightly further to the left due to the chest deformity but another shrug from my GP meant that this was just something I would have to live with.   

I did ask at the time whether this could be related to my medical history, particularly M.E. The GP laughed.  I complained to the Practice Manager about them laughing.  They replied with a “sorry you feel that way” non-apology. 

You may, if you live with M.E or a similar chronic condition, be wondering if I am describing EDS here.  I may well be, but I don’t think it was well-known then and no-one made or was willing to make the link. And I have not received a formal diagnosis. But whatever it was is back again.  Another semi-explained symptom which had abated is now back along with acute attacks of musculo-skeletal pain.  But, as I said in my previous post, this must just be some weird co-incidence. 

Edited: How could I forget this part of the story? At the same time these structural investigations were taking place I had the scariest 48 hours of my life. I had a heart attack.  Or so I was told.  Repeatedly. 

I saw a cardiologist as my specialist wanted to check whether the structural issues were affecting my heart and lungs.  (Lungs were confirmed at 70% of normal function). I was asked to do a stress test so I ran on the treadmill for ten minutes hooked up to monitors then lay down.  After a brief confer with his colleague, the cardiologist sat beside me and told me that the readings indicated that I might have had a silent heart attack.  They didn’t know when but it was likely. I watched my heart rate race back up to triple digits on the monitor as he delivered that news.  I asked what I needed to do once I could process what he said and he said nothing, just “be careful.” 

A day of so later I was heading from home to meet a friend and was travelling on the Metropolitan line. I felt a tingle which became a twinge then a pain in my right arm.  I became nauseous and found it difficult to catch my breath.  I started to panic and then convinced myself I was having a panic attack and got off the train at Baker Street. The platform was full as it was rush hour. I felt everything close in and then a few minutes later a blur of people over my head. When I came around a little a helpful soul gave me some aspirin suspecting it might be a heart attack. Someone else brought me a bottle of water (Londoners at their finest) and I managed to sit up.  Paramedics arrived and put an oxygen mask on me and bundled me in an ambulance.

That moment, as they hooked me up to an ECG monitor, was the most terrifying of my life. All I could think of was my Uncle Alec who had died suddenly at the age of 36 from an undiagnosed heart condition back in the eighties.  And how old was I? 37.  That was it then, this would be it for me.  The paramedic shook his head when he took the readings and told me it looked like I had had a heart attack. Yes, this was it.

I was taken to UCLH and hooked up to more monitors and put on a drip.  Blood thinners I was told. My now husband appeared after being called by I have no idea who.  I don’t think either of us could acknowlegde what was happening, if anything was happening at all. One of many nurses also appeared, took a reading, and told me again that there was a problem with my heart, but I was in the right place and needed to wait for a chest x-ray and to see the doctor.  A friend and her husband appeared who I had been due to meet up with.  I don’t think anyone spoke and time disappeared into a void…

Eventually, I was called for my x-ray and wheeled there by a stereotypically cheery orderly.  Whatever medication I was on seemed to be working and the whole world seemed to be painted in brighter colours.  I think I even ate when I came back to the ward. Sometime later a young doctor appeared, smiled and started to unhook me.  

“You can go home now.”

We all looked at her and each other and back again not recognising her words. “Yeah so there is nothing wrong.  The leads were in the wrong place, you are fine.” 

In the wrong place. It turns out that my heart, also being in the wrong place, had disrupted the readings.  Turns out that what happened was likely post-exertional malaise after the stress test, but that term didn’t exist then. No-one ever told me why a cardiologist failed to spot that or whether I did have a silent heart attack because, as I said, a sum total of nothing happened after. A common refrain not just for me but many people with M.E. and one of the many blind alleys down which I have been led since I started my M.E journey.

Back to 2008 these pains and conscriptions eventually dissipated and I managed to build my energy levels back up again by resting and a lot of sleeping.  There was always an underlying pain and stiffness but I continued my tuning out trick, further affirmed as a useful technique by a friend who helped people with unexplained pain, because as of yet, I was still wondering whether it was in my head. Running my own business meant I could set my own hours and decide the work I wanted to take on, I am sure that made a difference too so I went back to a mostly normal way of life, denying M.E whilst continuing to have regular bouts of sore throats and flu-like symptoms. Nothing like the range and severity I am experiencing now but as I move my story into the next decade, with its suprisingly hopeful start, M.E was getting ready to resume its position, centre-stage.  

*

Looking back over that decade from the view of now it seems alien to me that I ever lived a life without M.E in it.  I can’t recognise who I was, how I behaved, the absolute arrogance I must have exuded, and the secret underlying embarrassment about a health condition which I had been told, and began to believe, was in my head.  I had been successfully gaslighted into believing there was nothing to worry about. And when something appears to be gone, why would you?

So did it go away?  Or did it go back to sleep?  Or is it possible that it went away and I got it again?  I don’t know nor do I think I will know as I did not have the right people asking those question at the time.  Even I was complicit in denying it’s existence. However my denial whilst it may have worked for a while, even years, did not change the reality that something was there, sleeping inside, and that same something woke up again.  

What triggered it’s re-emergence?  I’ll explore that more in the final part of this story when time and energy permits.  In the meantime if any of this story resonates with you or has triggered you in any way please know that you are not alone.  There are many of us in the ME/CFS community, and also those with EDS, MCAS and other co-morbidities sharing our stories looking for answers. Please do reach out if you need help by commenting below or DM me on my Twitter @KirstieWrites.  For practical support you can also contact the following:

ME Association

Action for ME

ME Action UK

For countries outside the UK. ME Action has a global reach and is a fantastic organisation for support and advocacy.

Love and light

Kirstie

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If only

I was just starting to stir this morning. Not quite asleep, not quite awake, lying in the world in between. I felt nothing. No pain, no tiredness, for a moment I thought I had recovered and allowed space to entertain the feeling.

But I took a breath and time moved on and it all came back. I felt pinned, unable to move, exhausted. Then the pain set in.

I laughed. It’s not funny but I laughed. If only I could rid my cells of their memories, the changes that that viral infection had made. If only I could tell them a different story. But for now that is the illusion, a deception for which time and reality remains unconvinced. The jig was up, the ruse discovered and I had to accept the world that was here.

Thankfully this reality for me is temporary. I can push through little by little until I do recover to my baseline. As I lay there I thought of all my fellow peers living with M.E, those who live with severe and very severe M.E, that lay flat, crushed by time, branded cell by cell with a tryannical disease which offers them no escape. How must it feel to them on waking? As their body reminds them what lies ahead? How can we still expect our fellow humans to live like this, to exist in a hell dimension discarded by ego and arrogance? To have nothing but imagination to give them freedom and only when the disease permits.

So when you stir tomorrow in that delicious space in between, remember them, #RememberME.

I wrote these words and the poem below for ME Awareness week. Please if you don’t know about this disease find out more and do what you can to speak for those who cannot. https://meassociation.org.uk/about-what-is-mecfs/

If only

There is a moment –

Between the in breath and the out,
Before one number tumbles into another;

Where Life stretches out, lengthening its
muscles to touch the horizon, with an eager fingertip,

And the world sweet like honeyed roses, dips deep into thick warm chocolate,

As what was real sinks to a sigh beneath golden sand.

Here, between the fade of memory, is a day never written, in cells that lie still and clear.

In that moment

“freedom”

is the only word in existence

***.     ***.     ***.   

Then –
TIME
Flattens me on my bed
Crushes the air from my lungs
Brands my body with its remembrance:

I
AM
HERE

YOU
ARE
SICK

And the jig is up.

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M.E & The Virus that never leaves

“No poly. I feel like a bag of shit. Didn’t surface until afternoon. Can hardly eat. Can hardly move my eyes.”

This was an entry in my diary, one of those five-year diaries mainly girls of my day would be gifted for Christmases or birthdays. In my case it was my 14th Christmas, an idea of my mum’s, I think, who had also kept a diary as a teenager. I wrote it diligently at first. Mostly nonsense about boys and silly moments with friends. I kept it going until my 19th year.

I remembered this diary lay locked in a suitcase full of memories – letters, gig tickets, journals, other random ephemera to which I had attached meaning – the diary itself unlocked, its key lost to time, I remembered it vividly when I was experiencing the first side effects of the covid jab I had in late March.

For some reason, which no-one seems to know, the jab triggered for me some of the original symptoms and intensity of glandular fever – increased temperature, shivers, lymph node pain, sore throat, exhaustion and for the first few hours delirium. I flashed back to the day it happened, the day of this entry above – 12th November 1989

32 years ago. 

I was 18. I had just started my first year at what was then called Newcastle Poly. I had just returned from a weekend visiting my boyfriend in Liverpool. I had started to feel strange on the train. My eyes hurt, I was shivering although wrapped in my jumper and coat, and my throat had started to throb. Somehow I made it home to the flat I shared with three other third years and the next morning, or rather afternoon, woke up unable to move my body, and everything, my eyes, my skin, my bones, my muscles, even my thoughts, hurt. 

What I didn’t know then was that this would be a regular refrain for my adult life as this bout of glandular fever and the virus that caused it, likely contracted from my non-symptomatic boyfriend, would stay with me, and that and would be known by all those who suffered the same fate, as M.E. 

M.E stands for Myalgic Encephalomyelitis. It sounds such a heavy term, something you imagine a doctor would tell you in their best bedside manner before prescribing medicine or surgery to alleviate your condition. Saying it out loud, when you can wrap your tongue around it, makes it sound serious and possibly life-threatening. If you have never heard this term before you might feel that too. As you should, it turns out. You see, the irony is that it can be, it can kill and it can destroy lives, and the reality is, that this very real and crippling condition is mostly ignored. The reality is the bedside manner people with M.E are most likely to experience is a disbelieving doctor holding a bunch of negative blood tests, shaking their head and telling them to get out of bed. 

But back to that 18 year old with glandular fever. From my diary entries I can see that for the next six weeks I mainly slept and rested. I lost weight as I didn’t want to eat at first and I had a reassuring diagnosis within a week. I had been sent home back to my parents who took turns with my Grandma in looking after me. I remember my Grandma poking me awake after sleeping straight through the day. She told me she was checking “I was still alive”. I had some days where I felt well again, false friends of days where the day after I’d be back in bed. I’d make my own breakfast, dance a little around the room, put on make up, sing, ring one of my friends proclaiming I was on the mend, back up that ladder, then whoosh down the snake I’d go back to exhaustion and stillness and pain. That pattern continued until it looks like sheer will and frustration and the crippling fear of missing out on university life pushed me back far too early to lectures, bars and parties.

I look back at those entries now and shake my head. So dumb. Such a dumb kid. So desperate to have a good time and pretend it wasn’t happening. In therapy they would call this my denial phase. My dad called it “burning the candle at both ends”. My doctor didn’t call it anything because they were not really interested in any post-symptoms I was experiencing, that I wasn’t getting better. They just shrugged and told me to look after myself.

I will never know whether it was the 18 year old gone wild with freedom after being released from a controlling household, or the changes the virus made in my cells controlling the outcome that made sure I wouldn’t get better but I do know that at the time no-one knew what was going on. There were times too it would happen when I had done absolutely nothing. No candles to burn, just whoosh back down a snake when I hadn’t even climbed a ladder. It was just “one of those things” I would have to deal with. 

So I did. The best I could. By ignoring it and hoping it would go away. Always a great strategy and one still used by psychologists, well meaning friends and frustrated family members when people with M.E mention their symptoms. Not at all a spoiler for anyone but ignoring it does not work. Because it isn’t something that positive thinking or pulling your socks up can solve. Maybe one day we can ‘talk’ to our cells and heal them ourselves by changing our thoughts and thus neurotransmitter response, but I feel we may be some way from that. So stiff upper lip and getting on with it – it’s not going to cut it, no matter how hard you try.

After giving up on giving up and dropping out of Poly, I did start to grow up and look after myself better. Slightly, I’ll admit, because I was, as the 21st century saying goes, attempting to “live my best life”, but a year later weird symptoms hadn’t gone away and new ones joined the party. Roughly every three months I would get tonsillitis. Not scratchy throat but full on icky blisters on my tonsils. A doctor got so fed up of seeing me for the same thing that he handed me boxes of antibiotics and told me to take them whenever it would happen again. Note he did not get fed up enough to ask if anything else was going on or check my medical history or send me to a specialist, that didn’t happen until five years later after a doctor proclaimed “Yuck” upon seeing my scarred tonsils and told me they had to be “whipped-out post-haste”. He did not, however, investigate why this has happened in the first place. 

A few hundred miles south and another two years later I had become accustomed to days where I just needed to sleep, and between that and the continuing bouts of tonsillitis I attempted to live that best life. I had a job I loved working behind a bar whilst studying my degree again. It was one of the crazy busy ones with a spinning wheel all the students were fond of to get cheaper drinks even cheaper. On my good days it was loud, buzzy and once I was on my shift I didn’t stop. Until one day I noticed a tingle in my wrist, then my elbow, both my elbows, my knees then my ankles and my jaw. And what was at first a tingle morphed into a searing pain, as if someone was running around in there pushing up tiny hot pokers through all my joints. That pain or sequence of pain would stay with me until my thirties when I worked on tuning it out through meditation. Not an overnight bliss out on a cushion but focussed regular mindfulness that helped dull the signal, rather than fix the problem. Because according a stream of GPs and specialists there was still nothing wrong. I mean there was the raised ESR levels, high rheumatoid factor and low iron binding capacity and other red numbers that were glossed over but apart from that, nothing wrong. Oh sorry there was one who said “your immune system is doing something but we don’t know why”. He duly wrote to my GP and then, if I remember rightly, nothing happened.

Sidebar: This nothing wrong pain happened many times since then including and up to last week. Six weeks post-jab. Almost the same path of travel, the same gremlin let loose to wreak havoc. But this is in no way related to a vaccine that mimics the invasion of a virus and the immune response is it. I’m sure that is just a co-incidence.

So back to my twenties. Joint pain, exhaustion unimpeded by sleep, ironic insomnia, weakness, sore throats became the chorus to my verses as I joined the masses in the world of full-time employment. I had continued to travel down the country landing and setting up house in the Home Counties. I finally had my tonsils taken out which took tonsillitis off the table but dealt me pharyngitis instead as well as casually named “throat infections”, or URTIs, as they became fashionably known and scrawled on various sick notes for missing work. I also managed to catch chickenpox of all things which a doctor almost gleefully proclaimed, which is hard to miss when your patient tells you they have tiny itching scabby sores all over their body.

Let’s flashforward again to two nights ago and seven weeks post-jab. I felt that same sensation from the day the spots appeared – hot prickly popping all over my body. I even expected spots but none came. But again this is likely a co-incidence and nothing to do with a vaccine that mimics viruses.

Back to those twentysomething days and the same pattern of odd days of what I started to term “tiredness” coupled with joint pain continued and more symptoms moved in. I started to feel like I could not get enough air, I’d wake up and take gulps out the window. I’d get confused, lose words, lose the ability to process simple information like counting money. My pain refrain changed and moved throughout my body into my muscles and bones. It seemed to be in my connective tissue too but doctors shook their head when I asked if that was a problem. Some bright-headed doctor proclaimed that this was “low level inflammation” and decided the best course of action was anti-depressants in a low dose, that this would rid me of my pain.  Other than dry mouth and more insomnia, I couldn’t notice the difference, but I did notice two new terms were scrawled on sick notes – “post-viral fatigue” and “fibromyalgia”. Both of these I had to google which had just become a thing by then. But neither were investigated further.

I decided that this was indeed “one of those things” that people, mainly women, would have to live with. I was enjoying my career, making money and learning everything I could about the field of HR, including Diversity. I didn’t know then I would be classed as disabled having a condition that “had a substantial and long-term effect on my ability to do normal daily activities” and I still hadn’t heard the term M.E. That was on its way from an unlikely source:

One of my jobs in my work was to research and procure private health insurance. The CEO of the company had lived in the US, the parent company was in California, so he wanted something comparable. One of those insurances was for critical illness cover and looking at different providers I chose a company called Unum. (Yes, fellow people with M.E who are reading this, that Unum). We all filled in our application forms as instructed by our insurance broker and everyone was then covered, except for a few of us who were told we had chronic health conditions and would not be eligible to claim.  In a letter to me they declared I had “Post-viral Fatigue Syndrome” otherwise known as “M.E”.

Back to google and the penny, that had been inching its way to edge since my first days at Poly, dropped. All of my symptoms, the vagueness of it, the pathology, the crashes, the recoveries, it was all there. I had a diagnosis at last but not delivered by a doctor’s proclamation. (That wouldn’t happen for another fifteen years). I saw too that people with this condition called M.E could not donate blood because of the infectious nature of the initiating virus so obviously what I had was something that lived in my body. I think I remember feeling shocked by the revelation but heartened I was getting somewhere. That was to be short-lived.

The next doctor I saw screwed up his face and then laughed about how people were now rushing to this new internet thing and diagnosing themselves with all sorts and what I needed was some paracetamol and a good holiday. He shrugged at my letter from Unum about this disease they were calling M.E. Can’t speak to what an insurance company says or does, Kirstie, just relax, you are obviously very stressed.

Stress. You could also argue a pandemic is stressful.  Going out in public after mostly shielding to get a vaccine can bring great anxiety so it must be that that is causing all my post-jab symptoms, not the vaccine itself that mimics the invading virus.

From burning the candle at both ends to a stressful job, everyone I sought help from wanted to look at me as the cause not anything that lived inside me. I must be depressed, anxious, I must be crying out for help. I am sure at many points of my life I have been these things but how could I make my tonsils blister? How did my hands stop working when I tried to hold my hairbrush? Why couldn’t I donate blood? Why did it hit me so hard when I had been at my highest point not my lowest? Why did they not want to find out what was going on? 

I crashed massively in 1998. Nine years after my initial infection of glandular fever. I was off work for six weeks. My employer decided that my role was redundant. I lost my job. I took the next 18 months off to ‘fully’ recover. I decided that I would use the  time to find out everything I could about this condition, join networks, seek alternative treatments, in other words figure out how to heal myself. Things got a little strange after that, it looked like I’d found the magic formula but that wasn’t to be. I will save that for another story.

I am tired now. I have been typing for over an hour after a long sleep and I want to post this for ME Awareness day, which by the time I publish this will be today. My husband took me out for a coffee, out into the world. The first time since I crashed post-jab. That was three weeks ago now, around three weeks after having the vaccine. I have still not recovered. I am nowhere near my baseline and I feel, as my eighteen year old self put it, like a bag of shit.

But it’s a co-incidence that I had a vaccine that mimics the invasion of a virus and a bigger co-incidence that all my symptoms since glandular fever and post-jab are indicative of a viral infection that has not gone away. It’s just a psychosomatic response of female who has found a twisted way of coping with life events, a cry for help from a vivid imagination. Not the result of multisystemic condition which has altered my cells at a fundamental level, cells that no longer function in the same way when exerted physcially or mentally; that’s not it at all. That is as likely as the world stopping due to a global pandemic caused by a virus that for some may never leave.  As likely as being told that same virus is now just a figment of an overactive imagination, made up in your head.

***

For more information. That is, THE FACTS, on M.E and see what amazing things are happening to find a cure, please visit these incredible organisations .

ME Association
Action for ME
CureME
Me Research UK
Decode me
Me Action
Phoenix rising

*If you are struggling with post-viral symptoms following Covid-19 or any other virus please know you are not alone and not making it up. Contact the charities above or contact me directly if you need to chat.

*The severity of M.E that I have is termed Mild-Moderate. It means that I do have good days where I can go about my life. People who live with severe M.E do not have that privilege. Some are bed-bound for years. Some cannot process the stimulae of noise and light and have to be tube-fed. Some are sectioned because it’s considered to be “all in their head”.

*This disease needs more investigation. It needs to be taken seriously. M.E is one of the lowest funded chronic conditions out there and is it’s pathology is bitterly contested by theories which expound the belief that it is psychological illness only despite growing evidence, and in my mind obvious evidence, to the contrary. In most cases people living with M.E are funding research into treatments. People living with M.E are also supporting each other to campaign and raise awareness.

*This is the point of the ME Awareness Day which sits in the middle of ME Awareness week in the middle of ME Awareness month. It’s our spotlight, and our time to be heard. 

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Ode to a Bad Day #2

I am going through some old poems and revising a few, which is as much as I can muster right now mid-relapse.

I wrote this one two years ago when I thought I was having a bad day. Perspective can be a wonderful thing and it can also be brutal as I look back today and realise that after these last few weeks it was moderate in comparison.

But there will be a good day again in my future and this poem whilst it depict the struggle of navigating body and mind through a bad day, ends with a hopeful message.

Luckily this will be the case for me. Sadly those with severe M.E may only see endless bad days in front of them until we can figure out how to cure this absolute bitch of a disease.

If this resonates please share. If it sounds like someone you know please share and talk to them about it. Ask how you can help. Listen. Empathise. Expand your understanding. Raise your awareness of the multisystemic condition known as M.E.

Love and light Kirstie 💖✨💖

Ode to a Bad Day (revised for 2021)

***

Life-force sapped, arms of lead

Pinned and logged, heaved from bed

Pushed by will, stubborn as stone

Levering limbs, cast in wrought iron.

*

Eyes that sting, fighting to shut

Thoughts form tears – “if only”, but

Try to shake out despair, the closing grief

Fetid demons of false belief.

*

So so tired! Blood is fire, molten

Blistered joints, cracked and swollen

Must move on, cut through, ignore

Pain shatters resolve, so stifle its roar.

*

Can’t I just sleep! Oh Please! Can I

Just lie deep, and kiss my blight

Caress its heart. Give up hope

But no, it holds strong, a tireless rope.

*

The fire, the pull, the cloy, the claw

The iron, the lead, the heavy and sore

My constant. Lies curled. And there it waits

For hope to fall, and suck out my days.

*

Fear – cripples, conspires, as doubt creeps in

Exiled in place, left to its whim

My life now what ifs and ever again

I’m dank, I am doomed, lifeless, blood drained.

*

Another Bad day. And worse still may come

Clasps at my throat, scratched and worn

Each one, a reminder, the fiercest of claims

Each scar, a note – Always. Life comes back again.

*

Another Good day. It’s always the dream

Limbs to join the dance, eyes that find the gleam.

Face to the sky, to see the brightest light

I breathe. I love. I live. And I’m here for the fight.

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Defective

New poem for ME Awareness Month 2021.


I wanted to write something that reflects the frustration of being dismissed, ignored & gaslighted because we cannot be “good productive members” of a consumerist economy.
Seems apt to post this on International Workers Day too.

For more information on living with M.E or caring for someone with M.E I recommend the ME Association website as a good place to start.

Love and light Kirstie 💖✨💖

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The Frog and the Scorpion Part II

It maybe part of our nature but we can still change.

***

The frogs and the scorpions gathered side by side as they watched their beloved kin sink beneath the rushing flow of the river.

The frogs bowed their heads and turned away from the scorpions.

“Please!” said the scorpions. “Do not leave us. Now is the time for us to grieve and heal, and to cross the river together.”

The frogs stopped, watching the scorpion stings glisten in the sun. They shook their heads. “No. This is your nature.”

A scorpion, small and younger than the others yet still endowed with a deadly sting, came forward and spoke.

“Please. I know what I am. I will bind my sting with leaves and vines so it cannot harm you.  Together we will reach the other side.”

***

Change the story 🙏

Love and light

Kirstie 💖💫💖

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Contemplation 2021

Each year I choose a word that will be my “watchword” for the year. It serves as a guide, an energy I want to bring in and embed into my life. I described to a friend as the word that goes through everything I do l, like the word embedded in a stick of rock you would get at the seaside. It’s holographic, however thinly you slice it, the word is still there.

Last year my word was Substance. Ironic as last year was year of the virtual, but it functioned very well for me as a reminder to focus on the reality around me such as watching the life change in my garden, walking through woods and fields, eating good and nourishing food. It also helped me focus on building slowly and carefully rather than rushing in. Patience, resilience, attention – these words all sprang like new shoots out of my watchword.

This year I have chosen the word Contemplation. It’s a lovely word to say and even by saying it with care and attention it can bring about a moment of peace. However this word is more than a moment of stillness to me, it’s the act itself of finding and holding a sacred space for reflection, a way to access my Quiet and Simple Space.

Happy New Year.

Love and light
Kirstie 💖💫💖

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Economics Lesson

They taught me in Economics that money was infinite

So why do hands curse and bodies curl, in boxes overhanging the highway.

If money was infinite it would find them, would it not?

It would flow downstream, flushing the 

land with riches – fish, fowl, flowers, fancy 

Did it get stuck along the way?

Did some devious fox damn the current?

Is there a pool so deep, carved by neverfull mouths, lying still

Turbid, rotted; a stagnant oily sluice

Supped by everthirsty lips?

*

Or is it, finite. Like our emerald world.

Some for me, none for you.

Not tumbling down from the mountains

Slicking palms and tickling toes

But handed out like buttons.

Shiny, brassy coins of deference, 

divvied up, coveted and stroked,

by those who seized the pot.

*

The common scheme here is greed 

Grabbing greed that stems and squeezes,

that halts

the gushing waters, 

and shared treasures, 

placed here for us all.

***

October has been kicking my backside health-wise so I’ve been spending most of my time reading. First up was a non-fiction book How to Fight Inequality by Ben Philips, an activist and thought-leader in this arena. It was a powerful book full of examples and insights into how we ended up in such an imbalance of resources and need, as well as practical advice on what we all can do to take part in changing things for the better.


I’ve have a strange relationship with money – our main conduit for exchanging resources and fulfilling needs; I’ve always seen it as something that if you have a lot of it means someone else does not, an assumption some have took time to try and question, ie the argument that money, and our ability to make it, is infinite. Unfortunately, or maybe fortunately, that argument has never washed with me.


We have some interesting terms for and around money – currency, cashflow, circulation, trickle down, all related to water and the movement from a smaller source to a larger one, all giving the impression of a constantly renewing source. This gave me the idea for this poem which asks questions about what happens with this ‘current’ as it moves, which in our current capitalist state, does not flow where it is most needed.


But what if money is infinite? The illusion of water disappears and becomes cold and hard. Piece of silver, nuggets of gold. Hoarded and stored.


It could be that it doesn’t matter where the source comes from or what it looks like rather what we do with it that counts. Sadly, right now, far too many, choose to keep what is enough for everyone for themselves. And by doing so, they could be damning us all.

Love and light

Kirstie

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The Bird gets the Worm

I could be content, if,

I allowed myself to be.

I could not write lists

or set life goals,

if I was happy, just

Sitting

under a big old oak tree.

*

I could watch the blackbird,

(or is it a thrush?)

as she

Waits,

fluffed feathers dripping,

watching

for the worms to hear

that it’s raining,

to be speared

by her beak (clever thing).

*

I could be happy

if I gave myself time.

And forgot to do stuff, to do things,

and watch

life,

pure and sated, by nature’s

Timeless 

rhythm and rhyme. 

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The Search for Truth (Poem)

The search for Truth

We set out together to find it:

I, scaled the hill and slid

down the mountain;

You, soared over the lake and 

stalked through the trees.

*

“I found it!” We both said,

Grasping at the shimmering stone 

that had clung to the earth, 

wiping it clean with a sleeve.

*

We rushed back to where we parted:

You marched through the trees and

swept over the lake;

I leapt up the mountain and

sailed down the hill.

*

In your hand was a dull grey rock –

Nothing that glistened like mine;

“I see nothing” you said 

“but a sad grey stone – 

nothing that glitters like mine.”

***

We have our own idea of what truth means.  We can believe it is objective, immutable and transparent.  We can believe it is subjective, transient, and opaque. Or any version in between.  Whether you agree with me will be based on what you believe, what is core to your values, who you are and what information you have chosen to hold close or discard as you navigate your life. 

We live in a world now where phrases are quoted as if just as an objective truth as 1+1 =2: fake news, alternative facts, truth not facts, facts not truth. Evidence that is reported through scientific methods and reasoning is immediately challenged as biased, deep-state, ideological, just as much as evidence based on scattered anecdotes and assumptive extrapolation.  Arguments are full of straw-men, ad hominem and my favourite, reductio ad absurdum. (eg I identify as a penguin) None of these arguments are helpful or aimed at engaging in intelligent debate and critical thinking.  They are however aimed at something considered just as important. Winning.  To do that, they have to make sure they can sell the story.  

And we, the buyers, are motivated.

Emotions motivate us into action, not evidence.  We share a social media post not because of the evidence cited but because we have had an emotional response to it – fear, anger, pleasure, pain, joy, hope and we want that to be validated in a shared experience.  Trump tweets something unpleasant – it makes me angry- I share it- it makes some others angry- my anger is validated.  Or more essentially, I am validated. A friend posts a meme about everyone loving each other – it makes me hopeful and joyful – I share it – it makes some others feel hopeful and joyful – my hope and joy is validated.  And so on.  Validation of our emotions by others,  and the more validation that we can get, brings us closer to our version of the truth.  (A little thing called Brexit taught us that)  No doubt I have simplified a very complex process but as this piece is about my truth, feel free to disagree.

Which brings me on to my poem.  Is it a truth or is it a story?  Poems are a form of storytelling and I am, indeed, selling a story.  I am selling a story where one person sees a brilliant truth that is denied by the other.  Can one not see it because they choose not to or can they not see it because the other has been deceived? What happens after they see that the other does not agree with them?  In an earlier version of the poem I wrote of my stone that“I threw it at them” I decided to take it out though and leave the reader to draw their own conclusion. 

That conclusion will be based on that which you hold to be true. 

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The Cloak of Silence

It has took me a long while to appreciate silence. Our minds become accustomed to a level of noise which we don’t realise becomes comforting, sending us signals that life is how we would consider normal. I used to love the distinct whirring and wheezing of the Jubilee line, the trilling of the beeps at the barriers, the hiss as the 139 pulled to a stop, the semi-regulated stomp of feet trained to march from station to office, office to station, the clatter of cups from teas being made in the kitchen, the buzz of computers barely heard about the hum of conversation. 

At home, on my own, those noises, the symphony of my commute fell silent. Or at least that is how it felt. This new silence that had descended on my life, without the familiar soundtrack of my working day, weighed heavy around me. It was if it had cloaked what was normal from my view. My home, a sanctuary at week-ends, became a dark and unknown place full of hidden danger, traps and snares. Everything around me, everything in me did not feel right. Each sound a beat out of rhythm, each tone a key change too dissonant. Inside a voice, never before heard, began to shriek, you do not belong here!

At first I would drown out the unwelcome sounds and screeching voice with music, TV and radio. Cheery tunes in a major key, voices that would talk to me through drama, laughter and debate; my attempt to recreate what I was missing, and sooth that voice and send it back to the deep. I’d sleep too, or fall asleep watching uninteresting box sets. Anything to avoid this Silence, creeping around looking for a way in. 

But these noises, my cloned comfort, were unproductive. The hums, the whirrs, the wheezes and hisses I missed were noises of work and connection. Activity amongst others, achievement through progress. That path was no longer open to me, there would be no commutes or office blocks in my likely future, and so began the realisation that I would need to find a new path, and do so I would need to face the Silence. 

I sat. I waited. I opened myself up and it fell about me. It pushed inside, curling around my bones, seeping into my muscles until I was heavy with its presence. It whispered

“Wake up”

The heaviness lifted. Something lightly stroked over my skin catching each tiny hair one by one, a breath deep and constant expanded my lungs, a pressure forced open my ears. There were sounds all around me. The clicks and clangs of the heating system pushing hot water through pipes, a chirp of a bird, no two, out on the tree behind my closed window, the footsteps softly thudding across the floor of a neighbour two floors above, the wind crackling through the bricks, a soft groan of woodwork, and further out, almost out of reach, a faint hiss of a bus coming to a stop on the main road. And in between that, weaving it all together was Silence. Not to be feared but to be welcomed. Not to be my captor, but to be my companion. 

My life has a different soundtrack now, one born from moments like this. I no longer avoid or hide those quiet moments, knowing that they hold within, the riches of all sounds. Instead I welcome Silence, allow it in. The comfort is no longer the noisescape of my past but the heavy cloak it wears which descends around me. And for a time, its voice, that pure resonant voice, is all that I can hear. 

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Our Hopes for You

Without realising I seem to have been preparing my second poetry collection. I haven’t published my first yet but all the advice I have read or heard about writing encourages us to keep going and keep creating.

The theme of my second collection will be Hope, following on from the first, Crisis. This poem, written after a long meditation, had a strong and definite rhythm to it and a child-like quality, a time when we are usually at our most hopeful.

I’ve created a video for this on my Youtube channel, as well as two others that will form part of this collection (I will let you guess which)

Here is Our Hopes for You: A poem for children (young and old)

Love and light

Kirstie

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Life as of 31st January 2020 (I am with you)

It hurts to move,  to disappoint the ones you love

I am with you. 

There is pain in your eyes, as you leave your friends behind

I am with you. 

There is a lump in your throat, as you watch it fade away

I am with you. 

There is hope in your heart that it will be better in time

I am with you. 

You fear that the ground is lost, that your day is now done

I am with you.

Your back buckles as the burden becomes too much 

I am with you.

Your voice shivers and shakes , as you seek out the truth

I am with you.

I am with you.

I am with you.

There is love, the purest of love, in every cell of your body

I am with you.

There is laughter in your lungs, as you breathe in your joy

I am with you. 

You have a spring in your step, as the day replaces night

I am with you.

Your arms soften with the embrace of their hello.

I am with you. 

Your heart dances at the sound of a birds’ chorus

I am with you.

Your life fills with a million moments of the sun

I am with you.

It lessens, the pain,  as we begin to remember 

I am with you. 

I am with you. 

I am with you. 


Iris: Favourite flower of the Goddess Iris, Goddess of the Rainbow. She restores balance to the forces of nature after a storm.

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Hope’s Spring

I wonder if it is born from Death – hope?

Decay that falls back into the deep
Stripped down to whirring electrons, 
to the echo of life before

retaining one thing,

and is that thing – hope?

not the seed but the thought of the seed,
the breath, no the mere idea of the breath
of its existence, 

and there it waits – hope

as it gathers speed and its spirit swells, 
and, from less than no thing, 
pulls the world toward it

as it becomes a new thing, 
not at its core, but the form of the wet, sticky earth
ready, not yet but some day,
to die again

is that it, do you think?
is that what we call that thing – hope? 

💫💫💫

I noticed the first new shoots in our garden this morning. This one in particular struck me as it was in between a plant that looks very dead, or at the very least stripped of any visible life. 

Seeing the first signs of spring gives me that little shot of positive energy, a hope burst, that keeps me going whilst the nights are still dark and the temperature still chilly. It reminds me too that life is always there no-matter what and that whatever is happening in our lives, hope is essential in our ability to keep going. 

I had a feeling that this was something I wanted to capture in a poem. I sat down focussing on those little shoots and wrote Hope’s Spring. 

I hope you enjoy it. 

Love and light

K.S 💫

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Eviction Notice

Eviction notice

Once we were neighbours. 

We built homes of clay, and oak.

One night while I was sleeping, 

you came, and took the

Brick 

that I had laid 

close to the back door, 

the one I never noticed.

The next day you sold it back to me 

and found you could buy two in return 

(I could never do that)

On I slept, as you took

Brick

by

Brick

just enough to keep me knocking 

at your door, 

with sleep still dusting my eyes, 

exhanging precious metal for simple stone.

Brick 

by 

Brick

Still I hugged you, 

and I gloried in 

your success, as you added 

your new floor 

(I wish I had your house) 

The next Brick you offered

me at a 

discount,

and raised the price 

Brick 

by 

Brick

Until I couldn’t pay, and 

my

house began

to

crum – ble.

(Your house is so beautiful)

And still you came. 

Brick

(They must be so happy)

by

It was too easy. 

Brick

(They are so clever)

You shook your head

as you watched

from your grand hall 

counting your Coins;

(They are so rich)

pity-ing

the    room 

     you 

had

left    me, 

as   the  roof 

leaked

and the    cold

 blew

(One day I will have what you have) 

I woke 

 to a 

 paper 

 pinned 

 to my 

 door. 

“Eviction notice” –

Building unsound, 

unable to pay. 

I waved as I left,

leaving the last 

Brick 

as a thank you. 

But from up there 

How could you 

see.

***

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A Story by Numbers

digits-4014181_1920

A poem about perspective

For video version (5 min long) please visit my YouTube channel, click here

Which number are you?

This poem, in the form of classical storytelling, was created in a response to the political climate, especially the UK, where discourse involving different perspectives has been overthrown in favour of zero-sum warring sides of Leave and Remain. Both sides feel they are on the “side of the angels” and I feel not many have left a space to be wrong, or to consider the other side in any way right, and instead spend precious energy on either invalidating another’s perspective or imposing their own.

Numbers are simple. Each one different. Each one plays a valid and equal role. Using the mythology of numerology and archetypes I have anthropomorphised numbers to create 9 essential and different characters, traits of which you may recognise in yourself.

Valuing perspective is not only essential to the development of a compassionate and thoughtful society, I truly believe it is the only way to peace.

Love and light

Kirstie


0

At first there was only Number 1. They could do anything they wanted, at any time, for as long as they liked. But they desired companionship. No other Number existed only the nothing from which they came, so they created Number 2.

Number 2 was in many ways exactly like the number before them. They shared joy and their sadness, drawing comfort from each other. Yet Number 2 saw the world through different eyes and they were often in disagreement so they created Number 3.

Number 3 had all the good and all the bad of the Numbers before them and saw the world through different eyes. With this they found they could see perspective but could not decide which was right so they created Number 4.

Number 4 knew the confusion of the Numbers before them and, as they saw the world through different eyes, desired order. They established rules for all the Numbers to follow. For a while all was well so they created Number 5.

Number 5 was reminded of order of the numbers before them but remembered a time when they could do what they wanted. They disagreed with all the Numbers and, seeing the world through different eyes, felt alone, so they created Number 6

Number 6, containing equal energy of all, loved all of the Numbers before them and, seeing the world through different eyes, wanted to heal all of their pain. Yet the numbers before were now too many so they created Number 7.

Number 7, saddened by the pain and confusion of all Numbers, sought solace and comfort within. They saw the problem was with their eyes not the world around them, but this was not yet understood, so they created Number 8.

Number 8 contained much wisdom and experience of the Numbers before them. They had learned much from the pain and desire to heal. Seeing the world through different eyes, they wanted to share their knowledge, so they created Number 9.

Number 9 had the whole universe within them which contained both all and none of the Numbers before. Seeing the world with different eyes, they knew the world was complete as it was, all Numbers were equal, and with that, they would begin again.

0

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United Not Divided

united-nations-1184119_1920

Divide

Defied

Decide

What side

Desist

Resist

Insist

In this

Divine

Define

Refine

In time

Inside

Refind

Remind

Our kind

Relate

Innate

Debate

Our fate

Reveal

Unseal

Unsee

We’re free

Our Fight

Our Might

Our Sight

Unite!

Video version below:

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Your beauty radiates.

IMG_0764
Original art at the East Side Gallery Berlin Photo by K.Sivapalan 2015 (Free to use)

For the Youtube version please click here.

My latest poem, below, which follows on from my most recent post, is a reflection on the messages we receive every day about who we should be and what we should value – money, fame, power, success.

All of these messages, and the constant bombardment of such, can lead us to question our inherent values which may differ. Not only that but those who we may revere as icons of success have not got there on their own rather through an interconnected web of actions, behaviours, hopes and fears of others: The Billionaire Hedge Fund manager who bets on other’s misfortune, the self-made entrepreneur who has built their business through the hard work of others often without recognition of their effort, the smiling politician who prays on our fear of the unknown.

Eventually some of us can succumb and allow ourselves to be less than, to give up on our own dreams and live our lives through others. Yet, in the words of Marianne Williamson, [our] playing small does not serve the world.

You are beautiful, your beauty radiates through the success of others. Allow yourself, in your own way, to be successful too.


***

A Life Reflected

Show me a billionaire and I will
Show you

a million broken backs

Show me the voice of power and I will
Show you

the scream of desperation

Show me a star of celebrity and I will
Show you

dreams held by proxy

Show me one success and I will
Show you

the failure,

of many,

in its wake.

Show me your rich and I will
Show you

the face of the poor

Show me your mind and I will
Show you

your weeping heart

Show me your fear and I will

Offer you hope

Show me your hate and I will

Wrap you in love

Show me your anger, your bitterness, your scum and I will

Sweeten your cup

Show me your life, naked and I will

Worship Your story

Hold up the mirror

To see that your beauty.

Radiates.

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My Identity Now

globes-1246245_1280.jpg

I am

LibDemToryGreenBrexitUKIPLabour

I am

LeaveRemain

I am

NodealNonodealSomedealDontwantadeal

I am

Leftcentrerighttrascendantnotinterested

I am

AllandNoneoftheabove

I am

Rightconfusedcleardeludedcertainwrong

I am

Factgutemotionintutionheartbrains

I am

Educatedillinformedcleverstupid

I am
I am

I am

Blackwhiteasianmixedethnicchinesehispanic

I am

Muslimchristianwiccanbuddhisthindujewishshinto

I am

Malenonbinaryfemalenoneofyourbusiness

I am

Marrieddivorcedsinglepolygamous

I am

Biheterohomouninterestedundecided

I am

Settledrefugeeimmigrantnativenostatus

I am

Ableddisableddifferentlyabledchronicacute

I am

Joyfulsadanxiousdepressedhypersuicidal

I am

Fatherauntiecousinsisterunclemother

I am

Pregnantfertilehopingbarrenparentwaiting

I am
I am

I am

UKChinaSyriaMexicoSudanUSTasmania

I am

RussiaSriLankaPeruBhutanHungaryNamibia

I am

Cornssoywheatteabarleypalmcoffeequinoa

I am

Seamountainstreesriverscrystalsplainsgroveslakes

I am

Dolphinsmarmosetshoneybeesiguanasalbatrosssiberiantigers

I am

Airfireicedirtwateretherwindcloudsrainsnow

I am
I am

I am.

I am dust

I am stars

I am what remains

Of the planet, Earth.


***

This poem lends well to an idea i had about creating a more dynamic expression of the words. Because of its format reading it on the screen as you would in a book may not create the impact I would hope. I’ve been tinkering with video. Here is my first attempt. I wanted to keep it completely clean, no sound effects and no additional graphics. There is a peace and a sadness to it. I hope you like what I have done.

Love and light

Kirstie x

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I see with Love

IMAG1938.jpg

I see with my heart

I see your love, your pain

The time you won that award

The time you scored that goal

I see how you struggled, to love, again

I see your care, consideration, your sense of fair play

I see how you wanted to be something different but found another path, that gave you what you needed

I see the anger that you stop yourself feeling about things from your past

I see the quick wit, the naughtiness, the Boy who would be Pan

I see your heart, grow, taking more space inside you

I see your light, never to be extinguished

(Illuminating mine)

I see your courage, your hope, your comfort

In you and those around you

I see your skin, your flesh, your teeth, your eyes – a tender wrapping for your soul

A soul that has known a thousand lifetimes and taken many forms

I see with my heart, all that you are.

(All I can be)


***

This came to me this morning thinking of my husband. He has brown skin, I have white skin. We create a literal Yin-Yang when we curl up. We are both opposite and similar. We even made a big joke out of it all at our wedding with in-joke yin-yang references and venn diagrams. After my experience at the weekend (see previous poem) I have asked myself whether when I look at him if I see someone different to me, different by virtue of his skin tone.

I have a technique when I comes to reflective questions like this, especially questions that require pushing through layers of ego and conditioned responses, deep down into my soul. I ask myself the question and let it go. I don’t search for an answer, I don’t check my personal history, analyse past responses, I just wait and eventually a response bubbles up to the surface.

After a while, I heard a voice, it said

“I see with my heart”

The I here is not me. I am a work in progress. This is not virtue signalling. For me, the voice that spoke was the I in all of us. Our soul only knows the spark of Divinity within each “tender wrapping” – our spirit. And it only knows that we are the same.

As the much quoted Namaste tells us

“The soul in me, recognises the soul in you, and sees that we are One”

Love and light

Kirstie x

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Ode to a Bad Day

You can gather from the title today is not a good day. Yesterday wasn’t great either but today, has definitely been what those of us with mild-moderate M.E call a Bad Day.

I wanted to write today. I also wanted to do some housework. I wanted to go to the library and maybe stop off somewhere for a cuppa. On a Bad Day though, most of these intentions fall into the category of unrealistic goals as I don’t have the energy to move around the house let alone walk into town.

Sometime this afternoon I gave in to this reality and sat down with a book. As in often the case, once you let go of one reality another finds its way through and I wrote. Inspired by my current research on 19th century poetry and traditional poetic structure I found myself thinking about the Bad Day and dedicating a poem to it.

I have often toyed with the idea of writing whilst experiencing a Bad Day which has to far eluded me as I have been too tired to write. Somehow today, and maybe with the help of the structure providing a crutch to my weary body and brain, something emerged.

So here is An Ode to a Bad Day

***

Life-force sapped, arms of lead

Pinned and logged, heaved from bed

Pushed by will, stubborn as stone

Levering limbs, cast in wrought iron.

*

Eyes that sting, fighting to shut

Thoughts form tears – “if only”, but

Try to shake out despair, the closing grief

Fetid demons of false belief.

*

So so tired! Blood is fire, molten

Blistered joints, cracked and swollen

Must move on, cut through, ignore

Pain shatters resolve, so stifle its roar.

*

Can’t I just sleep! Oh Please! Can I

Just lie deep, and kiss my blight

Caress its heart. Give up hope

But no, it holds strong, a tireless rope.

*

The fire, the pull, the cloy, the claw

The iron, the lead, the heavy and sore

My constant. Lies curled. And there it waits

For hope to fall, and suck out my days.

*

Fear – cripples, conspires, as doubt creeps in

Exiled in place, left to its whim

My life now what ifs and ever again

I’m dank, I am doomed, lifeless, blood drained.

*

Another Bad day. And worse still may come

Clasps at my throat, scratched and worn

Each one, a reminder, the fiercest of claims

Each scar, a note – Always. Life comes back again.

*

Another Good day. It’s always the dream

Limbs to join the dance, eyes that find the gleam.

Face to the sky, to see the brightest light

I breathe. I love. I live. And I’m here for the fight.

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The Pisces Call

 

Wind Turbines at South Beach, Northumberland 2018 Photo by K. Sivapalan. Free to Use

I stumbled out the Great Sea with legs unsure and unformed.

Millennia passed as I grazed and clawed, grew limbs, and shook off my scales.

In time, my core stiffened to meet new pace, poise shifted and teeth met with tongue.

Through years I shaped clay from waiting wet earth, cementing will and all that I could desire

Until the call came.

The resonant wave I had long forgotten,

That advancing age had silenced with its heavy noise.

My form now ached for the flow of being being to be stripped of its edifice.

And the Great Sea – the bliss of both all and nothing – that had awaited my return.

 

***

 

This poem was inspired by a chat on Twitter with a fellow Geordie and Pisces poet.  Pisces is the last sign of the zodiac and carries within its vibrations the essence of every other sign.  It has gone through all of life’s experiences and is ready to transcend to a state of pure spirit before the cycle begins again and that spirit is reborn as the raw fire of Aries.

This is, of course, both symbolic and archetypal.  Not all people born under the sign of Pisces have done it all and are ready to “go home”  but I, for one, have certainly feel that pull, or to stick with the poetic metaphor, that call.  Pisces is often considered to be immersed in the world of feeling and imagination, coming from a place of no boundaries and blurs, as a result someone with significant Pisces energy may come across as vague, dreamy and overwhelmed by not just their own but others’ emotions.

Obviously this can be great if you want to write poetry,  not so great if you want to write HR reports or implement business plans.  (I am starting to see what led me here now!)

This may form part of a series of astrological based poems to be written in the time of each sign, however, as this is my own Sun sign, it will stand on its own for now.

 

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The perils of change

(I had to add this poem as a picture as WordPress helpfully kept removing my spaces!   Note- WordPress, you may need to consider this feature for the poetic among us)

The Perils of Change

This poem came to me in one of those midnight inspiration moments.  The last 6-9 months have been extremely wearing, with a number of events and interactions scraping away my resilience and picking at the stitches of the holes I managed to sew back together in my mental wellbeing.  They continue to do so and whilst I am not yet at the point of unravelling I can certainly see it in the distance.

Frequent deep breaths are needed to get through this period of profound change as I know, through years of evidence, that there will be a time when I look back at this time and think “phew, I made it”.  I will also look back at this time and see the moment that the changes were conceived, created by my own hand, or in this case, thoughts.  The power of “what if I lived my life differently” cannot be measured and the ripples cannot be fully counted.  It is absolutely without question the result of “careful what you wish for.”

Change often involves dissolving of ideas, beliefs, relationships and structures in our lives that we may think we are ready to leave behind, but when those changes start to happen around us it can feel like our whole world is falling away.  Not only that, we then realise we can no longer go back and even more fright-inducing is the dawning that we don’t know what the world will look like ahead of us.  A good friend of mine,  Natasha Westover, creator of the Awkward Swan, a blog about her experiences to create change in her life, calls this the Void: a place where we have no frame of reference as to how to get through it – others may have done something similar but no-one can experience an event from your eyes other than you – so all you can do is keep moving forward carefully,  one foot in front of the other.

The challenge on mental and physical health cannot be under-estimated. Fundamental desire to change yourself and the world around you creates, well,  fundamental changes. It can lead to unexpected and shocking events, feelings of deep grief for what you are leaving behind and relationship challenges where others can either blame, or be blamed for, our choices.  Without something or someone to lean on, this level of change can lead to increased anxiety, guilt and feelings of regret and remorse, and, in my case, a desperate need to control anything and everything around me as I sensed the loss of control the changes were producing.

Blessedly, I had the support of a therapist.  This was my someone to lean on.  She has helped me work through those presentations and find the resolve I need to keep going.  “Writing helps” which is often quoted to my friends in messages,  is my clarion call to my resolve – the word helps here is a euphemistic code for “is essential to my wellbeing”

Hence the poetry.  Here I can delve into my psyche and access the complex and competing feelings within.  It also leads me to the conclusion that whilst I pressed that big red button myself and things are decidedly ‘hairy’ at the moment, I will get to the other side…eventually.

 

 

 

 

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The carer’s career

Winter tree. Photo by K.Sivapalan. Free to use

I wrote this poem after texting my husband to pick up some milk. It occurred to me that there are relationships everywhere that at some point one will send this message to the other. I then reflected on what that request meant to me in my relationship and realised it’s depth. Hidden in this mundane communication between two people was the loving support of a husband to a wife living with M.E.

I hope for others with M.E, chronic illnesses and carers alike that this resonates and is helpful.


Can you pick up milk, I text you this morning

As you pick up my arms and lift me when I lose my hold,

And you walk each day to work (that it won’t let me do) without

Fear of it hitting during an important deadline

That only the steadfast and consistent can achieve.

Can you make dinner tonight, after being up since six

As you make my life that much easier (when it has me in its grip)

And I can switch on the oven and make you some tea, one sweetener,

And offer my ears whilst you tell me your day

As the days of secured success are behind me.

Can you tell them I’m sorry I can’t come now

As you play dutiful ambassador (to inevitable disappointment)

Explaining my absence at our friends parties

When it flykicks our plans for the uncountable time

As I lie there remembering all our dances.

Can they understand what you do, for M.E

As I know this was never in your repetoire

To play carer to the one who was vibrant at first

When it hit, it hit us too (and life ever changed)

And you kept me going, throughout the every day.

One day I will pick up the milk, make dinner and dance at parties

One day I will care and hold your arms in mine

As we walk along together, (when it no longer hits)

Remembering your work was of every moment

Giving us the life we could choose to make.

***


For the roots to my branches

My beloved husband DS 🙏💖💫

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Shouting into the tornado

The following poem was inspired by the growing mass of voices on Twitter.  I asked myself, what is the essence of the message behind the words.  What is it we want people to hear. Included in this, is my own voice. This is what I saw…

Can you see me?

Can you help me?

Can you feel my pain?

Can you make it stop?

Can I live here?

Can I survive my life?

Can you save me?

Can I save my world?

Is there space for me?

Do my feet make a mark, on the land below?


Can you hear me?

Our my views my own?

Do we think the same?

Is my mind the same as yours?

Where do I belong?

Is anyone like me here, in the Universe above?

Where am I?

Am I real?

Do I exist?

Am I?

I

.

.

(alone)

***


Voices unheard

I ventured back onto Twitter this month. Rather than the odd post of “Hey Twitterverse. Check out my work! Hashtag hashtag” I started to engage searching for the magical formula of 21st century – multiple likes, retweets and vast swathes of followers – because that’s what its about right?

A few weeks later I felt frustrated, depleted, unheard and unworthy. Even back in the early days of Twitter it was like shouting into the wind. Now it’s like shouting into a tornado. Such is the speed of change in the feed.

Taking a moment of reflection I connected with those feelings. What did they want? What were they not getting?

On some level there was a need for praise and validation. Hardly a surprise for an former Type A person who was always looking for a “well done” from Daddy. This need had been reinforced from childhood onwards for the pursuit of A grades at school and Excellent in work performance appraisals therefore why would that be any different for Twitter. My tweets needed to A+ and be praised by all. However due to spending considerable years working on my personal and social development I recognised this as “programming” and an infant need not yet reconciled.

But behind this programming was something else. Something that was barely heard but certainly underlying.

Connection. The desire to be heard by someone who understood what I was saying. The desire to be seen by someone who could see through to my core.

That was it. That was the experience I was looking for. This was was my magical formula for 21st century connection. To reach my hand across the virtual world and find another.

Recently I discovered the Twitter community of writers on #writingcommunity. We started to expIore how to connect with each other. One person in particular had tweeted and received no response. In reply she wrote how invisible she felt. I heard her. I was her! I wrote back and said

“you are visible”

It triggered me into remembering a piece of wisdom about the impact of active listening:

the two most powerful things you can say to someone are

“I hear you”

“I see you”

Our virtual world has become a tornado of information, of ideas, of the expression of raw emotions, of judgement, of fear, or hope, of every human experience and voices are being lost.

More than that the loudest voices are being amplified through algorithms designed on standard assumptions of more is better. Being heard is still based on popularity such as fame or infamy and if you don’t have that you can buy your way to being either or both. For the rest of us the subtle message is clear

“Follow the few, accept their view”

So we either keep going shouting into the tornado, conform to find the right number of likes to stroke our egos or give up and become resigned to being a voice unheard.

What if we turned this around? What if those unheard voices were amplified? Those with low impressions, little or no likes, and no engagement. What would we see? What could we learn? What are we missing?

Palatable to our values or not, all of us deserve to be heard and a social platform like Twitter could lead the way. How this could be achieved is another question which I cannot answer. I want to start with the what if and challenge our own emotional programming, not the programming of Twitter itself. Sometimes asking the questions is enough.

In the meantime if you are part of a large hashtag community or viewing a trend take time to connect with one of those voices with no likes. Show them that you are listening, that their voice is now heard.

The impact of that could be immeasurable.

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Heart beat

Can you ever stop your heart leaping up, painting right into the corners of a future not here?

That may never be.

Could never be.

Yet the heart has already vanished over a golden horizon –

titles up, audience jump to their feet

applauding the textured script, the wonder of realised vision.

Except nothing,

not one beat of its drum,

has yet been heard.

No, our heart casts off every nay, throws its head back to gaze straight into the sun

to live the lifetimes of the forgotten and denied.

And nothing –

no structure,

no creature,

no choice,

can force it still.

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The seeking of balance

Out of chaos, out of form, comes balance.

It reveals itself, not to those who crave order but to those who walk through the mire.

It holds those undesired in its arms, its cradle soothing their dissonance.

It looks into our world of spinning thoughts and yearning, and speaks:

“Find me in your middle, draw in the edges. Look within an empty heart –

I will be there”


***

I finished listening to the audiobook The Unfettered Mind this morning. It contains the wisdom of Zen master, Takuan Soho, garnered through his life as a swordsman, gardener, calligrapher, poet, author and adviser to samurai and shoguns. I sought out this book as I wanted to connect with readings or teachings of someone who had lived long before the Industrial Revolution, when technology was limited to weapons and tools of physical creation; a time when the virtual was the realm of the metaphysical and supernatural rather than ones and zeros.

This book, all of two and a half hours long, I can feel, has had a profound effect on me. Soho talks of the Way (also known as the way of Tao, or the Middle way) and ‘Rightmindedness” (which has been translated to our modern ear as Mindfulness). He warns of the pursuit of fame and fortune, the traps of thoughts and judgment, he explores the impact of our beliefs and ideals on finding peace and harmony, and he talks of the art of swordsmanship in terms of what we would now call muscle memory. He shares some beautiful and provocative poems too.

Throughout the book the theme of awareness of the tricks of the mind and the true wisdom of the body are present. All teachings of the New Age, Buddhism, as well as other religions and spiritual practices but from a time where cultural and social norms were so different to today. (or were they?)

I don’t wish to go into the book further and rather would invite you to explore the themes and insights that emerge for yourself. The wisdom comes from the book itself, certainly not my book review.

Coming to the poem above, it is obvious to me that it was inspired by this man, whom most likely lived and reincarnated many times before ours souls connected. I thank him for the inspiration.

Please read the poem how you will. I have my interpretation but would be delighted to hear and explore yours.

With love

Kirstie

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One. Two

The day was still. She felt like time, had frozen, the moment it happened.  Nothing mattered anymore; her heart, her blood, her breath would be a constant effort hereon in. Life had stopped, and she with it.

She could walk around that Moment and examine it from all its angles – the bed, the face of the once-smiling consultant, the intake of breath from her husband, that grey fuzzing blur on the screen, and the stillness, the icy stillness, emanating from there. That amorphous blur became her new vanishing point.

She could still make out the consultant’s lips starting to form the words her heart had already heard

“I’m sorry”

Yet, somehow, months later, here she was.  Still breathing, heart beating without pause. As she sat with that realisation, she looked and saw her world slowly begin to turn again. Complaining, creaking, its very bones aching from disuse and neglect, it moved back into its endless rhythmic cycles.  Soon, she would feel its return.  Life was not done with her yet.

Turning to look out of the window she watched the yellow balls of the belisha beacons blink at each other in perfect time, one a shade darker in tone.  Their unceasing communication comforted her.

“On. Off. On. Off. On. Off. One. Two. One. Two. One. Two”

It reminded her of how she had made it back to this point, the point of Hope.  One foot, another, one step, another, and repeat. Time may have felt frozen but that was her illusion, the thick blanket of grief that she was now lifting.

Movement.  She watched as above the beacons she could make out a fine mist of raindrops distorting the pattern of light outside.  The gentle, almost nurturing application of gravity; forces that held her and kept her safe.

“Gentle movement” she concluded.  This was the message.  Not still, no chaos or frenzy.  Just regular, rhythmic, unceasing movement.  One. Two. One. Two. One Two.



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Two friends catching up over coffee 

Hello my dear, it’s been too long

What have you been up to?

Well, this year I fell apart. A breakdown.

How about you?

I felt like I couldn’t go on

The kids, work, that neighbour from hell

I know what you mean hon,

I’ve had it tough as well

It’s exam year this year

And our oldest is just so stressed

They make it so difficult for them

Not good enough to do their best

Did you have a nice holiday?

I saw your post, looked indulgent!

Yes, two weeks on a beach in Turkey

Then my company made me redundant.

What are you doing for Christmas?

Are you visiting your family?

Not this year, no. ‘Cause of Dad

His health is not what it used to be

Doctor says it’s cancer. In his lungs

They missed it at his last check-up

They’re stretched too thin you know

The NHS. They just can’t cope.

So what’s next for you honey?

I just want a day, self-care, time for me

Life feels so full now

Those days are a just a memory

Well it was nice to see you

Let’s meet more often if possible

We always say that eh?

Then all the chaos takes control

Yes, give my best to everyone

It was lovely to see you too

We’ll pick up the pieces of our lives now

And pray, and hope, for happier news.

*****
I sat working on a poetry project today in a local coffee shop and overheard a couple of friends greeting each other as they were catching up on each others news. They started withthe usual “How are you” which is nearly always followed by “Fine” or “Ok” or “Very well thank you, and you?” A ritual of shared language that conveys nothing. Of course conversation deepens once the social niceties are dispensed but very rarely will someone say how they feel with that frequently asked question.

Reflecting on this, I found myself scribbling away at a different conversation where the hidden was offered up freely from the start and let the pen take me where it wanted to go…

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Mind – Full

Words are flying around my head
None will take root and find meaning
Feelings are sent tumbling
To a place without words

There are no pictures either
Just half-words and muddled phrases
Thrown up from deep recesses
Gushing into my mind

I can grasp neither heads nor tail
Whizz banging articulations fade
Before I can make their form
Replaced by a thousand more

Noise, of mouth moving and resonant sounds
None which say what is at my core
Words, my language of connection
Blunted by this sensory confusion

Only silence
The blackness of the void
The breath in and out
Stay, and sit beside me
They watch the words. Tight-lipped.
And let them go.

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System theory

Art is the system learning about itself

It is learning that its actions have consequences
It is learning that what it values changes as energy moves through its being
Art offers the systems opportunities to check and review
It is why artists express their inner world
It is why writers and poets write about beauty, nature, society, connection
It is why singers sing protest songs
The system is always learning.

Without art it will forget what it is and lose its soul


The photo is taken from the incredible installation by Tania Bruguera currently (as of November 2018) at the Tate Modern.

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Faithlessful

It’s easy to be full of the Divine when the warmth of the sun dazzles your eyes
But when your heart scatters into pieces across the Universe
What then of your faith?
What then of angels with soft wings?
What then of Gods and Goddesses, aspects and effigies –

Totems and trinkets that keep us safe in the world
That lie broken at the bottom of the hill
Wooden shards, emptied of their meaning
What of them?
What of them when the world is too much?
What of their lips frozen in beatific smiles

Do they carry you? Hold you? Weep your tears with you?
Or is your bed cold and damp with cries unheard?
What then as the Tower crashes down breaking your soft body against its rocks
What then…as you hear no answers

Maybe faith is silent and hidden
Cautious of worship, ever mindful of conquest
Maybe faith is grateful to just – exist
What then is nothing. Not one thing
As maybe faith is the quiet space in between.


I have found myself amidst a spiritual crisis. Possibly the most worrying crisis of my adult life. This poem reflects that crisis for anyone who has, like me, self-identified as a spiritual person, espoused love, light, gratitude, angelic guidance etc and then, like me, experienced a life event so destructive and painful that it threatens to tear that identity from your grasp.

There is often a fair bit of raging, arguing and swearing at the folks “above” or even cutting all communication. For example at the moment the upstairs lot and I are not on speaking terms. This is common and will of course pass. As the Divine ones know only love they are aware that this is a process for us so patiently wait until we calm down and return to the fold.

I don’t want to go into what has happened to me that is not the point of this post rather it is to share the crisis of faith that is currently taking place though my poetry.

It helps to write. It helps with the pain, it helps to explore why that pain means such intense suffering and it helps me understand my spiritual self. Hopefully, if this is something you are currently living through, it may help you too.

Faith is tricky because we expect it to be evident, to be our constant companion and to never let us down. For me, that has not been my experience. Sometimes my faith feels like it has vanished and offering me false hope and sometimes it feels like it’s singing from the rooftop, gilding my steps as I go.

Maybe that’s it’s job, or maybe we make it more than it is, maybe we will never know.

And maybe, that’s the point.

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Situation vacant

Something died inside me, as the year turned towards night
Someone, not really a thing, a person to be, vacated
Slipping back into the mist
Leaving me empty and silent

I walk through his room, feeling for a presence
And hope an image remains, a ghost, or a memory
Finding nothing but echoes
Repeating back my thoughts

He has gone now, and I know it must be
That his spirit was taken, by tales of wondrous adventures
Residing in fields of energy
Filling infinite space and time

I wish him love, and see an amazing journey ahead
It was too much for him to stay, his form too close, too fitted
Surrendering to the All
Eschewing his human skin

Still my body is empty, I hear its hollow sound
His life no longer lives there, just organs, bones and dust
Driving itself forward
Waiting to find its role

Something died inside me, as the year turned away its face
Just a shell though, left to wither and decay
And a Great Spirit that
Soared into the Light

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Saturnine

The Lord of Time brooks no insolence
His moments precious as the stars
Meting out that which we desire
Holding in reserve should we remember
Time is not ours to master but to respect as we would the sun and moon
It cannot be counted or stored nor defined for our convenience
As it flows through our hands uncaptured

Yet Time is
Constant.
Unwavering..
Still…

Arms outstretched, His presence is a gift to us as unending as the Universe
For those who accept his Turn

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Winged

What if we are angels in training?
Each a step closer to our wings

Although these wings are not feathery and light
They are made of the strongest substance in the Universe, forged by experience and powerful learning
They are every colour of our emotions
They are soft to touch after lifetimes of abrasion

Yet we cannot break or bend what is created in the Divine

What if our Light is the core material
Weaving threads with each connection made in love?

Cords of the deepest compassion for each other, shimmering in infinite rainbow light
They are offered in complete trust
They are cared for like blessed children

So together we can take winged flight through the stars.


Thank you Clara for your friendship, inspiration and unconditional love.

Your wings are waiting… 💫🙏

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The formula for Gratitude

Want to know what gratitude feels like?
Take away the every day…

Take away getting ready for work
Take away opening jars, making tea, standing while it brews
Take away hats, scarves, sunglasses, flipflops
Take away cosy chats, feisty debates, gossiping girls
Take away walking, running, cycling, swimming
Take away everything you never knew you did and everything you thought you could do
Take away showers, baths, holding your hairdryer, combing your hair
Take away making plans and keeping them
Take away meeting friends, challenges, ideas and life goals

Now add

The moment you can lift your head, make someone smile, send a text, wave hello
The moment you can write, watching the ink flow across your pad
The moment you can kiss your partner, make them a cup of tea, put their clothes away
The moment you can sit barefoot under a tree, be out in the world, eat expensive cake with frothy coffee
The moment you can sleep, and wake up feeling rested
The moment you can be a shoulder for a friend, listen to their story, hold their hand
The moment you remember how great are the little things, the every day, the sum much greater than its parts

When you become aware of every breath, the magic of your body, the love of your friends

Where the pressure fades away back into the void
Where each moment seems to find a stillness in time
Where the grass becomes rich and green beneath your feet

And you remember

***


I made it out today. It was the first time outdoors since Saturday, not too far but far enough to feel like an adventure.

My local coffee shop does great cakes, and I do love my cake. It is one of my greatest pleasures in life. As I am dipping my toe back into social media I decided to instagram my coffee and cake with a message about the little things that keep us going when bigger things are getting us down – a message to my friends and family en masse that I was still not feeling well but managing to find the joy where I could.

It crossed my mind that it is thanks to M.E I am able to hold onto the little things. With the added awareness that mindfulness practice gives me, I can go from experiencing to savouring these little thing moments. I can almost stop time just for a moment as I taste the first sip of a cup of tea I have made, enjoy a cuddle and a giggle with a friend. M.E gave me this as it took away everything that was my every day. I went from a life where these little thing moments were ignored in favour of what could be, and should be, until the most simple of things became what could not be…

M.E, Lyme disease, chronic pain, any other auto-immune condition, with which we have self-identified the term “spoonie” in solidarity, if you live with one of the above you might recognise my tale. Us spoonies may have our bad days, and often those bad days outnumber the good, but we are resilient folk often pushing through when we want to give up, dealing with well and not so well meaning people who already have decided to dismiss the invisible as unbelievable. We are creative, finding ways to live no matter the avenues now closed to us. We are resourceful, connecting with those like us, researching our own treatments and even diagnoses. And we are grateful. Not because we live with these conditions but because we can, and we must, find these little thing moments in our lives and grab on to them until the next one comes along.

For us, and whilst eating that sumptuous cake, I wrote this poem.

My little thing moment for today.

Love and light

Kirstie 💫

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The eclipse

Burning brightly, joyously. Solidly.
Creating life-force and essential fire, until it falls –
Shadow
Only glimmers struggle to stay
Reminders of what lies behind

The shadow sits, weighty and cold
Dense and obstinate, refusing to leave
It stifles and suppresses its enemy –
Light
For a while it wins.
All that once shone removed

Pain. Exhaustion. Confusion. Left in its wake
Shadow looks to take its root
It does not see what is approaching –
Time
Its constant chases the shadow away
Light returns, burning brighter than before


Today is day 3 of a series of bad M.E days. No relapse seems to be the same. This is one is made up of sleepiness, feeling drugged as I stumble about my flat, confusion and difficulty processing information. (I can write but not read) and sensitivity to light and sound. (feels like someone is messing with the brightness and volume on the TV set of the world)
I am monumentally fed-up with it all which in this case is manifesting in an increase in inflammation in my joints and muscles.
I woke up this morning, after 10 hours of some kind of sleep that is what I call reverse-sleep (the more you have the less refreshed you feel even though you can’t keep your eyes open), and I was thinking about eclipses. I realised what a perfect metaphor eclipses were for these relapse-remitting conditions, especially as they often eclipse is when we are burning brightly. My friend Evy had triggered the thought process by sending me a message of reassurance and understanding about M.E which I’d like to quote:

“I’m glad you feel that I can understand it. I can only imagine what it’s like by having had so many friends with the same Illness and they really are some of the best people . It’s almost like they burn so brightly and then burn out.”

I recognise that in me and others I know with M.E. We often get labelled as falling victim to boom and bust. I certainly am a master in overdoing things. I feel so happy and joyous when I am full of energy, I feel like I do shine and burn brightly. There is so much I want to do, say, experience…live. Then this shadow descends, as it does with an eclipse.

And like an eclipse each time the shadow takes over it carries a message. A message that can only be seen in the dark after the light is extinguished. It tells me the light always returns, time does not stop and change is constant.

I might be fed up now, pained and utterly drained but my energy will return, after this shadow has passed.

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Composure

Yesterday I had that moment all aspiring writers have.  “Why I am doing this?  Am I even any good?  Am I just indulging myself? Should I even bother sharing my work?”

I allowed myself some time to reflect on this, to ask the question without a furious search for the right answer.  Instead I remembered an image from my childhood, my piano, and I started to write…


 

I never thought I was ever any good at playing the piano.  I had inadvertently heard from a fellow student that, whilst I was technically good, my teacher didn’t feel I played with any heart.  I remember that being the first major criticism, albeit second-hand, that I had received from anyone other than my parents and it bored into me, right into my ten-year old tummy.

My piano teacher was always so kind. Focussed too, she would stare down at me through her bi-focals with their silver chain, never with any harshness though, just pure determination to help her students improve. She was always so patient with me, knowing when to nudge a little bit sharper when needed.  “Imagine the orange, Kirstie, keep your fingers curled around that orange” (My little fingers would always try and flatten, a real no-no for piano skills) To hear that this lovely, sweet woman thought this about me was a true moment of dis-illusion.  I felt that first fizzle of humiliation as the experience started to dissolve my shell and expose the vulnerable young girl struggling with her confidence and place in the world.

It didn’t even occur to me then or even later that this fellow student, so collegiate at the time, might actually not be telling the truth, or more dastardly that that, may have been trying to deliberately hurt me.  Maybe she saw me as competition? Maybe she wanted my time-slot? Maybe I was just there, a willing participant in her battle with her own abilities and confidence, an easy target.  Of course, I didn’t have the capacity yet to think of such subterfuge and psychological processes so I believed her story and from then, I was no good. Wooden and emotionless.

 

If anything I felt the opposite was true.  I made plenty of mistakes, my positioning was never great having never really mastered holding that imaginary orange. When I played my best was when I became lost, where I ceased to be aware of myself and allowed the notes on the page to become the beautiful resonant sounds they were meant to be.  In these moments I was fulfilled. I gave myself over to the composer be it Brahms, Beethoven, Mendelssohn, classic musicians of classical music. My fingers found the keys under their guidance. I became a channel and just let go.

As I grew older my interest in technical achievement disappeared and that piano, its cherry wood, slightly chipped keyboard with broken left pedal, became my sanctuary.  Playing with these musty old composers became my teenage strategy for dealing with the stresses of school-life – the endless falling in and falling out of friendships mostly but not exclusively related to boys each other fancied, fights with my Dad as his heroic image began to fade,  being unkissed at 15, being utterly confounded by Physics and getting my first bad grades – the experiences that terrify and scar our adolescent minds which we trivialise when adulthood re-patterns our frame of reference.

I melted into my carefully created world of classical music. Clementi’s Sonatina in C, Fingals Cave, the Moonlight Sonata, for a moment in time they all took me on their wings.  Even now the opening notes of Fingal’s Cave sends me straight back there, amongst the dark, faintly dangerous rocks surrounding the warrior’s cave. I hold my breath preparing for the awe that awaits as the piece gathers pace and the waves begin to crash.  I have no conscious memory of the notes I played just the journey they took me on, took me away from, that allowed me space to be.

 

Sadly, and I am so incredibly sad now to admit this, I lost interest in my piano and my musical guides and by age 18 I had moved away both literally and figuratively to other adventures. By 26 I gave away my precious piano citing my reason as the increasing pain from the recently diagnosed fibromyalgia. I claimed that it was too upsetting to keep my piano around when my fingers burnt around the keys, so I had it taken away.  The moment it was loaded onto a white, unassuming van something inside me dipped below the horizon and did not return. I convinced myself it was the right decision yet could not shake a feeling of quiet grief.  On some as of then inaccessible level I knew I was giving away more than a thing of wood and string, I was giving away the connection to the most important spiritual experience of my life, a communion with a Divine energy that had never managed to touch me in Church (where I had been told it was supposed to).

I haven’t played a piano since then.  I may have tinkled and tapped on some keys now and then but for most of my adult life I traded one keyboard for another.  The finger positioning and undulating movement of my fingertips were consigned to HR reports, emails and procedures.  I would even volunteer to do additional typing for colleagues as it would be a way of connecting to that echo of the past for me but there was no music, just the click of the keys,  rhythmic but without melody.

 

Yet this unfortunate tale has a hopeful change in key now, or even a new movement with a different tempo, as I have found it again!  That feeling, the flow, the dissolution of self that takes me away and creates space in the now.  The composer that speaks through me now is my connection with the Divine,  forged through years of meditation, opening of the heart and mind and person healing, and that Divine is the Divine in me, the Divine we can all access.  Our spirit, our higher self, our soul, however you choose to define it, that unerring, enduring sense of alignment with everything, the All-that-there-is.  For a while I had this through my piano, now my instrument has changed.  It is the pen, the screen, the keyboard now that provides my sanctuary and deepens my conversation with my true Self.

I am a writer now because I write, and I write because when I do I am whole.  I feel the power we all have within us to dig out wisdom from forgotten times, to tell our stories, to provoke, challenge, to share, to create.  Being technically good, just as before, does not interest me. This is not for your likes or some honour or award, this is for me, my spirit and the spirit in all of us.

I am that teenager again sitting at her beloved piano. A willing channel, waiting to play…

 

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Sabre tooth post-truth

Our Modern life is full of Sabre-tooth tigers
Warring of clans and poisonous spiders
Dirty dank water and cavernous pits
Furious fires and razor sharp cliffs

Or so our brain thinks, accustomed to caution
Hard wired to react, all out of proportion
A disease of our time, a shameful admission
Anxiety and stress that we try to keep hidden

Overactive amygdalas, sensing a fight
With nowhere to go accept back deep inside
Creating imbalance in our mental health
Which cannot be spoken of, as seen as weakness not strength

Instead we repress, avoid and project
Ignoring the crisis, we plan and deflect
We run away from our fears, drink down our despair
Carry on in our jobs, “nothing to see here”

Except for some, pressure becomes too great
The tiger is upon us, dark thoughts start to escape
Deep from the pit we have dared not to look
It has taken us now, that fire consumes every mood

We fall from the cliff at war with ourselves
Struggling to see what is real, as we only see hell
Checking, rechecking, paranoia and doubt
We walk around screaming without making a sound

Isolated, in secret we carry this weight
As Modern life tells us be happy, make money! before its too late
The messages say don’t give us your shit
Just buy what we sell, shut up and eat!

If only we could share the challenges we all face
In our mental health, our emotions and hidden shame
We could work with the tiger that is hunting us down
Find the toxin inside and change our programme

As the funny thing is we are all the same
We all have these fears and thoughts that cause us pain
There may not be tigers and wooden -staked pits
No spiders that bite, or vipers that spit

Just modern life and its crazy unwritten rules
Its celebrity status and impossible goals
Its stiff upper lip and its socks pulled up high
Its insane machinations and incredulous lies.

Maybe the tiger was easier, more simple no doubt
Than this life of shadow and smoke we have created now
But those feelings, they’re real, those screams are getting so close
And our numbers are growing
We are finding our voice!

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Sadness is the colour blue

Sadness is the colour blue. That shade of midnight. When the Sun has gone as deep as it can go and
the faintest stars blaze like the strongest suns.

Happiness is Yellow. Bright buttercup yellow.
Like the swimming costume I wore when I was five playing in our paddling pool keeping cool in the heatwave of ’76.

Passion is red. The first flush of blood to the cheeks when you see them, you know, “them”. The one that captures your breath, tenses your muscles and takes residence in your thoughts.

Despair is steely gray. A blue-gray of gathering of clouds before a storm, carving precise outlines of the bright buildings beneath, bringing light to London’s belfries and tower blocks.

Love? Love is a rainbow of colours of course. All of the ones we know and those we don’t. Every emotion contained in its elegant curves, as it lights up the sky.

And green, today my colour is green. The colour of hope and connection. The lush green of the trees in Hyde Park and at my window, as they fling wide their leaves to catch every ray of sun.

My paintbox is full this year. The canvas painted with a wide brush and sweeping strokes, deep with colour.

The picture formed, my masterpiece.


As I have mentioned in previous posts, my pieces both prose and poems have come into being through sharing thoughts and ideas and allowing others work and musings about the world to inspire me. I call this the flame of inspiration which I believe is the essence of all creative expression. A sacred fire that we pass on to each other to allow our souls to speak.

This particular piece was inspired by conversations with my dear friend Sally who set me on my journey of finding and allowing every emotion in; giving the same space and attention to each one rather judging them as better or worse, or positive or negative.

As Rumi says in his poem The Guesthouse

“Welcome and entertain them all! /Even if they’re a crowd of sorrows/ who violently sweep your house/ empty of its furniture”

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My Bank Holiday and M.E

Some days I just want to sit under a tree.

This is the Bank Holiday day we always dream of but very rarely see. Powder blue sky, lush green trees at the height of their vibrancy, parks full of string bikinis, string vests, local boys impressing local girls with too-loud music, bare stomachs and alcopops. Footballs thumping, frisbees whizzing, glasses chinking, pubs pumping out sunny tunes, grateful to be cool and only serving a spattering of shade-seeking gin-sipping patrons. The feeling of rest and play is palpable and infectious, as if work was just a distant daydream away…

For me, it really nearly wasn’t any of that. It was in fact, very nearly, a too close-for-comfort “bad day”, a bad, treeless day. You see, I have M.E. Or, as we now all say, I “live” with M.E as if in some reluctant co-habitation arrangement.

Wry criticism aside let me get back to my day…

I stopped functioning for a while. I knew I had already overdone it, passing way past my point of no return when only one outcome was inevitable. I had given myself the Sunday to recover, as always expecting that would be enough. Surprisingly – although why I say surprisingly as that is an inappropriate use of a word employed to indicate a change in a story, where in fact here there is no change – I was not recovered when I woke up that fine Monday morning. My body did not want to work. My blood was filled with lead, each blood vessel forcing its way around my veins, each one standing up as if congested with impatient travellers. I could move but only under extreme protest and each movement felt wrong and uncertain. Not only that but my brain couldn’t make sense of anything. I had wanted to go to the park but I couldn’t figure out how to do that, what I would need to do, to pack, to tell my husband. My mind had been completely emptied of any data and just. Stopped.

My poor husband tried to make sense of the world for me. I could see that he looked as helpless and confused as I did but I had lost the words “helpless” and “confused” and the concepts from which we derive their definition. All I could say was “I want to sit under a tree”. My life had become distilled into this one desire and seven tiny words. There was no past or future plan, just the singular motivation to find that tree.

Without fail, the experience I have managed to describe above from the position of returned energy and thought processing, takes me by surprise. Despite the relentless see-saw of crash, recovery, crash, recovery over the last 28 years I fall for M.E’s charms during its dormancy EVERY. SINGLE. TIME

“I’ve progressed”. “I’m better now”. “That was then”. “I have stamina”. “I’ve got it sorted”. “Under control”. “I know what to do” – these are all insane comfort statements I have made to myself since my late teens and then, of course, surprisingly (except, as we know, not really) bang, crash, thwunk, down I go.

What is they say about the definition of insanity? Yes I get that although I do know I am not actually insane, merely deluded. Fooled on a regular basis that I one of those “norms” as a fellow M.E friend calls the suitably energied – those that can occasionally overdo it for a few days without the need to take to their bed for a few weeks in return.

Ah but this time, I really do think I have it sorted. At least I think I have the living bit with sorted. I am still here, picking myself back up, building up yet again. Bit by bit I’ll keep moving, knowing for me movement no matter how small is key to improvement, I’ll do a few steps, then a few more until I get right back to the familiar point of no return ready to do it all over again. It’s ok really, I am not scared or upset or even frustrated. This is my norm, my own unique rhythm of purpose and action. It’s how I get things done. Up, down, crash, boom, once more with feeling…

I’m ok because I know that I am one of the lucky ones. My version of this pernicious pest of a disease is what is known as “mild”. I did get to sit under my tree and will get to sit under many trees in my future. It may have took more effort to get there than the time before but I found a way and caressed each blade of grass with my bare toes in deepest gratitude. It could be so much worse. I get to live with my co-habitant as an inconvenient, infrequently rude and unpleasant houseguest, no more than that. My life continues (mostly) unabated.

Severe M.E is a whole different beast. There is no impoliteness, no inconvenience, no occasional blips, just a raging, unending, life-sucking monster wreaking havoc with every bodily system it can find. My brothers and sisters living with severe M.E don’t get to sit under trees, nor are they likely to find the words to bring that desire into being. For the majority of their lives those with the most severe form don’t get to live but to exist, trapped inside their corpse, sometimes with thoughts for company when the energy of thought does not exhaust them. The majority are bound to their bed not by any shackles but by the disease itself. They can be stuck in this half-life for years and add to their tragedy, a mechanically-minded medical profession choose to admonish them with labels of “conversion disorder” or severe depression. I have lost count of stories of those who were once trailblazers, go-getters, athletes and warriors who somehow a section of furrow-browed psychologists believe they chose their fate. I weep, I despair, I rant, for them.

Then I remember how lucky I am. I get good days, I get to live, I get to write. I get to share my pain, my love of trees, my bank holiday day.

I get to tell you that if this isn’t you, then you are blessed.


This week (7th-13 May 2018) is M.E Awareness week. I have added some links in here if you would like to know more. I urge you to watch Unrest by Jennifer Brea who whilst living with M.E has brought our condition to the attention of the world. Watch it, share it, talk about it. If you are not affected by M.E yourself I have no doubt that there will be someone around you who has been. Those with mild M.E don’t always share for fear of judgement in the workplace and friendship groups. Listen to someone with M.E, ask them how it feels, what you can do. And the next time you are sitting under a tree, remember us.

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Reblog: From a fellow M.E warrior. Listen to her roar!

Today I am angry, not just mildly displeased or irked but gut wrenchingly, blood boilingly, fist clenchingly, teeth grindingly, word spittingly, ear steaminlgy angry and try having all of those things going on whilst your trying to be articulate. So do I have 5 minutes of your time? Will you indulge this tantrum and […]

via Em’s Blog – I’m Angry — Living The Half Life