One of the things I have struggled with most, particularly when the illness passed the 6 month mark, is whether I should be focussed on making a full recovery, or whether I needed to accept I had a long term condition which I should start adapting my life around. It might not seem like a big distinction but I am finding it actually makes a big impact on my day to day life. For instance, if I am focussed on recovery, I need to do absolutely everything possible to enable that. 100% of my food choices need to be compliant with the diet I have found helps. Alcohol is absolutely off the table. I need to avoid a crash at all costs, so socialising, going out with the kids, pushing myself at work, are all things I need to really limit. My life needs to revolve around ‘getting better’. But, I might do all those things and it doesn’t actually help. So how long do I do them for? How long do I restrict my life, to the point I’m not really living it?
My other option is to accept this illness is with me for the foreseeable future and to figure out a way to live my life, to the best I can, within my limitations. That might mean peaks and troughs with how I feel, will probably include crashes where I disappear for a few days or weeks but, as long as I don’t push too hard, I should hopefully maintain the ability to at least manage to do some of the things that make me, me.
Without really considering it, I have definitely started following the second path. That’s not to say I’m not still hopeful of a full recovery one day, but it’s not something I am focussed on to the detriment of everything else. So I am living my life. I take the kids out for walks and we play as much as my energy allows. I go to weddings, see friends, go to the cinema, go on date nights, drink alcohol occasionally and push myself at work to make sure I am at least doing my job well, if not setting the world alight as I’d once planned on doing. To see me doing these things, you probably wouldn’t know anything was wrong. I can put on a very good face of seeming fine (sometimes it’s not even a lie – sometimes I really do feel ok, relatively speaking) and as my illness is invisible, there are no outward signs I am struggling to stand, walk, form coherent thoughts etc. No one likes a moaner and sympathy will wear pretty thin if I spend my days reeling off my symptoms so I try to reserve complaint until I really, really need to speak up.
Starting this blog has prompted me to look back over the last couple of years, at more than just the illness but at all the things I have done despite the illness. And when I think about those things, such as the theatre trip to see The Cursed Child, the fabulous Edinburgh weekends to see some of my best friends, the holidays I’ve been on, the times I’ve spent friends old and new, I can acknowledge that although I may have felt like crap half the time, and paid for it afterwards, I genuinely enjoyed myself and I remember and embrace that feeling, much more than the pain I was in.