Starting to understand CFIDS / ME / CFS

From Weighed Down by Sophie Meredith

She tells me to just get started. I protest that I want to write something interesting and engaging but honestly, when I feel well enough to consider that, I forget what it actually feels like to be down under the grimy covers of ME / CFIDS / CFS. Now, I am peering through one eye, my head is pounding. My throat is tight and lumpy like a clogged sink. My facial muscles want to be touched and soothed. My bones feel like they hurt from the inside-out. My whole body wants to be touched and warmed and soothed. I am tired but hyper and frustrated inside. I cannot sleep and I have an innate sense that it is not fair that I should have to in broad day-light. A vein in my right hand throbs irritatingly as I type. I feel alone. I desperately want someone to understand. I sweat between moments of stillness and rest and those of fighting to appear well and racing to do something, anything, with my day. I feel alone, but at least I am alone. In company, I feel confused, anxious, stupid and slow, unengaging.

We all can forget how ill we felt when we are all at once well again. When I am more able-bodied or able-minded, I forget how it feels to have a real ‘CFS-day’ (as I describe it to my girlfriend, Al). I feel angry, though, that anyone could have taken me too seriously, including myself. I think, ‘I am a brilliant and well person who should be trusted to do things. Give me responsibility! I can do anything the same as you. Give me a drink or a social group, and I will be as fun as I have ever been. Give me a yoga mat and I will show you the fit person that I am.' Inevitably, very soon after the outburst, I am forced to remember with a crash just what CFS is and I lie here with the consequences of having been reckless enough to have behaved like…a normal person.

When something’s bad, we may have a socially understood ‘event’ to remind us. People refer to times like ‘when I was in hospital’ and know that it MUST have been bad. We sometimes consciously leave ourselves a reminder. When Al fell off her bike, we took photos of the imposingly gargantuan bruises and though she may sometimes forget what a pain it was not be able to get around for so long, one glance at the photo, brings it all back.

With ME/CFS, I forget again and again only to remember all over. As with severe food poisoning, you think ‘please don’t let me ever feel like this anymore. Let this be over.’ ‘Normal’ has never been such a tantalising concept. You are apparently calling out to a higher being --whom you are not accustomed to chatting with -- out of sheer desperation. Next day you almost forget all about it.. until the next time.

I feel like this sometimes every other day, or week or morning or afternoon. I do not know how to predict it. I may be chatting away confidently when a thick fog sweeps from my nose up my forehead and into my skull and my left eye feels like it is shrinking. I begin to wonder why you are talking to me, or even, at the worst times, who you are in relation to me. I may become dizzy and want to lie down. I will either become completely vacant, or, if I try to fight it, frowning and irritable. I now know that I crave quiet and clear air, though I did not recognise that before I was diagnosed.

If I do not relieve my symptoms with rest or withdrawal, I deteriorate. I become anxious and irritable. I do not want to be alone, but there is nowhere else quiet enough. .. and yet, I must prove I am okay. I may look okay. What will this person think if I tell them I am tired or have a headache? How lame will that sound? I am not the kind of person who shies away from a chat or a job or a shopping expedition on account of a headache.

My reluctance to calmly and confidently allay these symptoms for fear of what other people might think, is, as far as I can work out at the moment, one of the few things in my control. I can work on this to make my life, and other’s around me, easier. I remind myself that I cannot make people understand but I can do what I need to do for myself and do what I can, to let people know.

I intend for this ME/CFS condition to teach me things for life about how energy is best spent, and what I take for granted. I do not have the energy to stress. It is a luxury I can no longer wish to waste my daily dosage on! That is currently an idea that I have yet to work out fully how to implement. I begin Cognitive Behavioural Therapy on Monday to help me work on managing this. Acceptance is my starting stone.

My conscious challenge in curing self is to work with CFS/ME/CFIDS not against it, and to accept help, not isolate myself. Just as an able-bodied person might remind themselves how lucky they are, I have to remind myself how fortunate I am with a miraculously supportive, proactive and loving girlfriend and a beautiful and kind family who are doing everything they can to understand and to have such persistent and loyal friends, despite my apparent withdrawal.