One of the most difficult things about having Myalgic Encephalomyelitis is the way it fluctuates more than a DNA strand by Chernobyl. I can go from feeling relatively well to completely burnt out in a matter of hours, which even after a decade of living with a chronic illness never fails to catch me off-guard. Unfortunately M.E can also change on a much bigger and more permanent scale, and what was once the norm suddenly becomes an exceptionally good day, or if you’re lucky an exceptionally bad day. This has happened to me several times over the years and adjusting is never easy.
The first significant decline in health following the viral meningitis that started it all came after a few weeks of Graded Exercise Therapy. This therapy works on the premise that you simply need to build up strength again to feel better, and in the case of some injuries does work well. However, it is now widely known among M.E patients that it causes more harm than good, as strangely a disease characterised by what doctors call “post-exertional malaise” does not respond well to exercise, and I went from needing to rest occasionally to needing a wheelchair to leave the house, and often needing mobility aids indoors too. In fairness to my doctor, at the time the infamous PACE trial had not yet been debunked and I was sent to physiotherapy in good faith; I hear that these days, having seen what happened to me as well as hearing about the trial, they no longer refer M.E patients for GET.
It was incredibly difficult adjusting to what I had once taken for granted now being unreachable. It impacted my relationships with friends and family, my education, and my career prospects. Dreams of more practical roles in the medical field, particularly veterinary sciences, were no longer an option to me. I honestly thought my life was over before it had begun.
With the benefit of hind-sight I can now see what a mopey teenager I was, as my health stabilised throughout my A-levels and even improved slightly at university. While I still needed to use a wheelchair whenever I left the home, the use of mobility aids within the home was minimal, and relapses were infrequent. Even gall stones and emergency surgery, followed by a diagnostic surgery a few years later for endometriosis, didn’t have any long-term implications for the M.E.
Then, in March 2020, I got a persistent high temperature and cough. I wasn’t really eating or drinking anything other than water so I cannot comment on whether or not my taste was affected, but even with testing being unavailable at the time, I am fairly certain it was coronavirus. I was very unwell but managed to keep breathing and avoided hospital, but the aftermath has not been pretty. My asthma, a condition which up until that point rarely bothered me, became poorly controlled with asthma attacks becoming a sometimes-daily occurrence. This certainly can’t have helped my recovery, which even once the temperature had receded was not going well. For months I required the use of mobility aids around the home again, a frustrating move backwards. Over the summer I gradually got to the point where the mobility aids were needed less frequently, but the small relapses I experienced were longer and more severe than they had been in the past.
More recently, and seemingly for no good reason, the M.E is once again in decline. I am certainly able to do less and am relying on mobility aids more. I often lose my balance and at times am too tired to make my own drinks, let alone food. Getting out of bed every morning is harder. Without an obvious trigger there is very little I can do beyond cope, and I don’t necessarily manage that all the time. Yet I know that if I can get worse for no apparent reason, I can get better too.
It is always difficult explaining to people that what you could do yesterday does not reflect what you can do today, especially when your body shows no visible signs of illness. It is always difficult to explain to medics that pain, subjective (a.k.a. all in your head) or otherwise, it still pain in need of treating. It is perhaps most difficult reasoning with myself that, while the M.E does not rule my existence, it does overrule a lot of what I want and I have to respect that, because fighting it just makes it worse. That is the biggest lesson from the rise and fall of my health.