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.

Published by Kirstie Sivapalan

Writer. Poet. Indie Kid. Crystal Lady. Pisces. Enthuser. Cheerleader. Helper. Geordie Londoner. Sharer of stuff I know. Sometimes found working in HR (but not very often) Oh, and #spoonie, living with ME/CFS. That about covers it.

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