A couple of things have inspired me to write this post. Firstly, when I wrote my post about problems with washing when you’re chronically ill, I received a comment along the lines of “I’ve got family and friends with M.E., and I can’t believe she can’t wash.” Secondly, my Twitter comrade and writer, Tom Doran, wrote a brilliant post1 about living with depression and the extent to which it both limits your life and changes your outlook.They’ve lead to me thinking about how misunderstood M.E., Fibromyalgia, and depression are, and also my internal reaction to my poor health.
It’s been twenty years since I first became ill. In September 1993 I’d been swimming, at the age of 11, in the sea in Cornwall. It was to be a quick fun detour on the way back to my uncle’s house in Plymouth, at the end of a lovely day out. It turned into a horror that would hinder the rest of my life. I became caught in a riptide and dragged out and down by the undertow. I very nearly drowned and swallowed sewage that had been pumped into the sea. It was days later that I began being constantly sick, feeling extraordinary pain and going rapidly downhill. Months later I still did not feel better and I was eventually diagnosed with M.E.
My health has gone through peaks and troughs and I’ve experienced numerous reactions because of it. There is the side where society reacts to you as a chronically ill person, replete with being patronised and erased: the experiences of people talking to my friends and family rather than addressing me; the losses of friendships when I relapse; the access issues. Then, there is the side where society reacts to you as having an illness that is little understood, and often not taken very seriously. It has even been the butt of jokes by comics such as Ricky Gervais, who built a routine around it which suggests it entails being tired and a bit whingey. He also compares it negatively to MS, in a “it’s not as if it’s a real illness like MS” kind of way. Apparently not understanding that, ironically (before enough money was ploughed into research), MS was treated as a made up illness too. However, despite the awful way M.E. is regarded it has been recognised as a neurological condition by the World Health Organisation since 1969.
On top of the macro-societal reactions there are their micro counterparts. People see you on a good day, and presume that is how your health affects you. They do not grasp that the only reason they’ve seen you this singular time in 2 months is because it is the only day in all that time when you had the energy to even pull yourself out of bed. They also fail to see the horrible energy deficit you have accrued by seeing them. Often with M.E. you experience a major crash one or two days after energy exertion of this kind, and then you feel VERY ill. The worst part is when the misunderstandings lead to contempt and people question the veracity of your ill health because they cannot understand relapsing and remitting disorders.
M.E. is largely ignored in the press, and when it isn’t it is largely presented as “yuppie flu” (a term that should remain in the nineties), or as a purely psychological illness, or even simply as weakness. I think the brain is a powerful organ and psychological stress can often result in awful effects upon your body, and I have experienced significant problems with my own mental health, but it was as a result of my physical illness and not caused by it. Many sufferers are fed up with being told “it’s all in your head” by doctors who haven’t kept up with more recent research. Mental illness needs to be taken very seriously, but it is important not to conflate the two in the above way. The importance of this can be seen in the heart-breaking case of Sophia Mirza2. Sophia was slowly recuperating but the doctor’s treated her as if she were psychiatrically ill. Against the wishes of Sophia (who was a grown adult) and her family she was taken into inpatient psychiatric care and her condition significantly deteriorated. Sophia died at the age of 32. The cause of her death was recorded as “renal failure as a result of chronic fatigue syndrome”3.
Chronic Fatigue Syndrome (CFS) is another, though contentious, name for M.E. The reason this is contentious is because chronic fatigue is only one of many symptoms of M.E. My experience includes chronic fatigue, muscle spasms, neuropathic pain, numbness, pins and needles, bowl conditions, menorrhagia, a weakened immune system (which leads to a variety of viruses and infections), muscular atrophy, dizziness, insomnia, and at other times hypersomnia, low blood pressure, hypothermia, depression, food sensitivities, rheumatism, fasciculations, myalgia, post-exertional malaise, migraines, cognitive dysfunction, brain fog, fainting, palpitations, join pain, sweating, restless leg syndrome, heartburn, stomach cramps, nausea, and many more. There have been times when these symptoms are grumbles in the background, restricting what I can do with quiet threats of what will happen if I overstep the boundaries. At other times they are a constant agony and getting out of bed feels as though it is an insurmountable challenge.
Added to this there are the numerous medications I take to try to combat these symptoms. I have butrans patches (opioid pain relief), gabapentin (neuropathic pain relief), baclofen (a muscle relaxant), omeprazole (proton pump inhibitor), laxido (stool softeners), naproxen (anti-inflammatory), amitriptyline (tricyclic antidepressant-used for neuropathic pain), co-codamol (analgesia), movelat (topical analgesia) and a few others. These medications each come with their own side effects, to the extent that you often have to decide which is worse- the symptom or the cure. Alas, even with all these medications I still experience a great deal of pain and constantly need hot water bottles on my legs, back and stomach. I have infra-red burns as a result, which do not hurt but my skin is now scarred with dark brown webbing, and it has thinned, leaving my skin often itchy, and susceptible to burns, which regularly become infected.
Erythema ab Igne on my back
Tom’s post, referred to above, made me think about my own reactions to my health- both physical and mental. Illness has slunk me into deep depressions. I’ve been in a psychiatric hospital for an eating disorder, and because I tried to take my own life twice in one weekend. I was thrust into such a dark state of mind that I just could not cope with the idea of a future where ill health was all that existed for me. I am now in a place where I spend less time aware of an unrelenting sadness, but I wonder if that is because it has now been replaced with numbness. I still think about the future, almost obsessively, but I have nothing to focus on. A psychic long dark tunnel always looms in front of me, with just a pin prick of light at the end. Sometimes I wonder if this is a form of self-protection. If I focus on a future where there is something, will I then be able to cope if nothing changes? The idea of forever in this 10ft by 12ft room sends a silent primal scream running through every inch of my being.
I have been experiencing a long relapse where I’ve spent most of my time in bed, regularly having to fight to have enough energy to converse with my family. I am petrified I will not recover but I have also begun to think about what recovery would psychologically entail for me, if and when it finally happens. Yesterday was a good day. Once upon a time, days like that where I had more energy, would lead to me placing huge expectations upon myself, and then if the next day it was back to the usual feelings of pain and exhaustion the disappointment would act as a weight pulling me down into a depressive cycle which would make it all so much more unbearable. I now try to take each day as it comes. Tom’s post resounded with me. His description of “false dawns” in his recovery from clinical depression made me think of those countless times when I placed all those wasted hopes on recovery. It turns into a dizzying dance where depression, hope, ill health and despair exchange places at a blurring pace.
The inverse of this is when, during periods of relative wellness, you catch a virus, or have a bad day and you constantly wonder if a relapse is suddenly about to appear on the horizon, looming over you like an impassable mountain. Though I try to enjoy my remissions as much as possible, and during them live in hope that this time it will be my turn to recover completely, a part of me continues keeping a vigilant eye open for the worse.
I once, internally, laughed when a mental health nurse suggested that I treat myself to small things, such as essential oils. I did not want to express it as I knew she was well intentioned but I wanted to scream at her how much more I want than fucking essential oils. I want a job, independence, friends, rooms (plural). But I now wonder if she was right. I need to try to focus less on the future and more on the here and now. Maybe ill health with essential oils is more bearable than ill health without, and perhaps I should embrace that. Do I say to myself, fine, you’ll never amount to anything, but fuck it, at least you can smell nice not doing it! Or do I rage against this and risk eternal disappointment? Answers on a postcard please….