M.E. is a relapsing-remitting illness, much like M.S. This means that there are times when the body suddenly ‘crashes’, with a worsening of symptoms and an increase of disability. This is a relapse. Remission for me is not like cancer remission, where there are no symptoms at all. Rather it means that the symptoms are not worsening; they may be gradually improving or they may just be stable.
I had glandular fever (mononucleosis, from the Epstein-Barr virus) in 1997 which completely wiped me out for 2 months, and then went into ‘remission’. I felt like my normal self again, but every time I got a cold or minor virus I would feel exactly the same as I did with glandular fever, and it would take me much longer to recover from it. My first M.E. relapse came in 2005, though I didn’t realise at the time that is what it was. One day I woke up and just couldn’t get my brain to focus on anything. I had a month of feeling very ‘out of it’ and exhausted. After that, I started feeling better, but was not able to function exactly the same as before; I would tire more quickly, was only able to work part-time and was falling asleep in the day. Then in 2007 I had another major relapse; this time my mobility was seriously affected and from then on I couldn’t walk more than 600 metres per day. I became a wheelchair user. In 2008 I had got a little worse and could only walk 400 metres per day.
In early 2010 another relapse; this time it left me unable to walk more than 200 metres per day. Then in mid 2010 I gave birth. The physical exertion of labour, though relatively short, triggered another relapse, this time rendering me initially bedbound, and then largely housebound. I had a few months of improvement, then in early 2011 I relapsed again. My mobility is significantly limited: not only can I not walk outside of the house, but even inside I can’t walk around freely. I can only use the stairs once a day; any more than that is too much effort and would risk deterioration or another major relapse. I can sit up for a limited time each day, and I can have about 2 hours or so of social or ‘brain’ activity per day (blogging, for example).
In between these relapses, there is a long, painstakingly slow effort to improve. This means having to very strictly stick to my energy limitations, making sure I don’t exceed them each day and then gradually, gradually, when I haven’t experienced ‘warning symptoms’, I can push the margins a bit, and extend the time I spend chatting to people, spend slightly less time each day lying in bed, slightly more time sitting up.
These are the clinical ‘facts’ of the pattern of the illness for me. But how does it feel to go through this?
In a period of remission, it feels like climbing a mountain. Not the kind of ‘Lake District’, nice-day-for-a-walk-mountain, but proper Arctic explorer type mountain. Or a glacier, even, where the ice makes the ascent that extra bit challenging and hazardous. It’s inching along, clinging onto rock and ice, sheer effort. It’s hard work and unrelenting, but every now and again you can look back and see you’ve made some progress, and you’re a little higher than you were before. It gets a little easier, you can go slightly faster. You look back and see, ‘hey now, I can walk 10 metres per day further than I could 3 months ago!’
A relapse is like losing your grip and falling off the glacier. One minute you’re carrying on as normal, the next minute you try to take a step and feel the ground slipping from underneath you.
You get that sickening feeling in your stomach – a mixture of dread and denial, and then comes the frenzied scrabbling to desperately regain your grip. All futile.
Then gravity takes you and you fall, and it feels like an endlessness of falling, not knowing when you’re going to land or how bad the damage is going to be when you get there. I think that feeling of terror and the unknown is the worst part. That’s how it felt after I had just given birth and I could no longer stand up or get out of bed by myself. It’s the feeling of, ‘is this it now, is this my new nightmare, or am I still falling? is there still worse to come?’ I had this feeling in 2011 when day after day I would experience more symptoms, and would find myself able to do less and less. It’s the panic of finding it harder to walk and wondering, ‘will I now be unable to walk at all?’
Then there’s the feeling of getting up, and coming to terms with where you are after the fall. The deep, deep disappointment of those small, hard-won improvements, all for nothing. The feeling that you were tricked into complacency, and something has been snatched from you. And the fear of having to do life at this new level of disability; looking up and seeing the place where you last were, now looking so utterly unattainable. Not wanting to keep going at this new level, and knowing you have to.
Replaying and replaying over in your mind what happened just before you lost your grip, ‘did I have warning? Was it because I wasn’t resting enough? Was it because I spent too long chatting?’, all the while knowing how pointless it is because you can never really know and never really prevent it.
I am currently in a place where I feel like I’m finally making some progress, the inching is less slow, I feel more in a rhythm, I can see improvement. Last year, I was in ‘free-fall’ for 2 months, before eventually landing in a place of disability so severe that I just couldn’t conceive of how I would be able to look after my baby at all. It was, frankly, terrifying.
I don’t have that same sense of fear now, more like denial that it will happen again. I don’t believe it will happen, because I can’t believe it will happen, because I can’t imagine how I would cope. Each time I relapse I think there’s no way that I can do life like this, and that it can’t be done. And then, of course, you adapt, you surrender, you compromise, you give up on seeing life a certain way. Part of me thinks I ought really to have got more used to illness, more accepting. But it still feels wrong.
I want to say something helpful or encouraging about the aftermath, with the benefit of hindsight. I’m not sure if I can. For the moment, I just want to be honest about that raw fear.