Starting over…yet again

With every setback I have to wipe the slate almost completely clean again. I can’t just pick up from where I left off. It no longer takes months or years to get back on track but it still requires a kind of willpower and resilience I had no idea I had.

As always, I must count my blessings. I am not having to start from the very beginning anymore. I am well over two years into my M.E journey and already I can see my improvement because I don’t have to go back to the days of being bedbound in our dining room for months and weeks, or needing a wheelchair to get down the hall to the toilet. Instead I might need a few days, or half days, in bed, and then a few pyjama days, and then a few weeks slowly building up my strength again. Admittedly it takes maybe months to get back on track after each of these setbacks. I can still meet most of my baseline targets, and if I couldn’t they wouldn’t be appropriate goals. Setbacks like this can happen a lot. I don’t see them as full blown relapses. Relapses are different in my opinion. Setbacks are another example of how progress with this condition is always a case of one step forward ten steps back.

This current setback began on Wednesday and, because of my sensibleness and foresight, I had a ‘day off’ on Thursday in the hope of decreasing the intensity of the awfulness ahead. (I knew I was likely to suffer a couple of days after Wednesday’s post office adventure.) I dread to think what yesterday would be like if I hadn’t had the ‘day off’ on Thursday. It’s the nature of the beast though.

So, on this occasion, I stopped before my body screamed at me to stop. This still, it seems, comes with its own problems though. I have noticed this before. When I stop and slow down my body seems to revert back to it’s poorliest. It makes me wonder whether I am running on adrenaline and pushing myself the rest of the time. I feel that I always listen to my body so I don’t understand. I don’t think I push it too hard, I don’t follow the ‘boom and bust cycle’ and I give in and don’t overdo it. My CFS/ME clinic are thrilled with me so why these slumps in poorliness whenever I ease off a little? Has my body been playing tricks on me? And, if so, what kind of treatment is this rehabilitation programme that we are supposed to follow?

Anyway, in the midst of a setback I try to have pick-me-ups to cheer me up. This can be tricky because at my very worst I’m unable to do much more than lie in bed, not too upright but not too flat incase my head or the room spins. Bridget Jones has always been my go-to girl. She (almost) singlehandedly got me through a broken heart once and if you can survive a broken heart you really can survive anything! Toy Story and Monsters Inc (and anything Disney Pixar really) are also top of my list. I know I sound like a child, or a loser as I’m often branded, but they’re my favourites and my brain really does struggle with anything more intellectual than Finding Nemo. I also turn to comfort food, although I try to keep off the gluten still. In my opinion there are very few situations that can’t be improved with a decent bar of chocolate.

I don’t like to describe days as good or bad but as better or slower instead. (A good day for us would probably be the most unbearable day for a healthy person!) To me these are just slower days. It is sad that this feels more normal if I think about it. Since when is it normal to be worn out looking at a computer screen for more than a minute or typing a few replies to friends online? Since I have M.E apparently. It is what it is. I try not to dwell.

This condition requires a kind of willpower stronger than anyone could have imagined. To keep going, to roll with every punch, takes something almost superhuman in my opinion. The majority of health professionals are against us, the majority of the media is against us, many of our own family and friends are against us through their inability to believe and accept this horrific illness. But worst of all, our own bodies are against us. We try to nurture them as best we can and coax them along and let them win the battles so that we might win the war, yet still they knock us down when they feel the load has become too heavy. There isn’t always a rational explanation behind their revolt and we, as patients, have to rise up and rise above the unfairness of our situation. It takes a special kind of human being to do that each and every time a relapse or a setback or a crash occurs. My poorly friends are inspirational.

Our fight is something that not many people can relate to. We have lost our lives yet we are still alive. But while we grieve, we must also never give up hope. It is a balancing act that comes with no manual or guidelines. Our bodies are weak beyond recognition but our spirits have not been broken despite the attempts of everyone and everything that works against us. Everyone has their own cross to bear and who am I to say that one particular person’s cross is harder to bear than someone else’s, but I do feel that there are few people who appreciate just how heavy the load of the M.E sufferer is.

There are things I so badly want to do as I start to come out the other side of this current setback. Having a shower is top of my list because I look (and probably smell!) most unpleasant. Alas, I have learnt that I must not try to run before I can walk and I must not walk before I can crawl… Patience, patience, patience.