For the most part I’m happy with my life, despite how limited it is. But there are times when I realise just how limited my life is compared with how it could be. And this realisation gets me down.
If you think about it I live in a bit of a bubble, an ME bubble. If I stick to my routine at home, within my limits, I manage my life quite well. But if I step outside that bubble, it can burst. It’s then that the realisation of how limited my life actually is gets me down. Sometimes it doesn’t take me stepping outside the bubble for it to burst, it can be seeing what other people my age are managing to achieve, where they are in life, what they’re doing etc. I don’t begrudge them for it, I’m happy for them but I am a little bit jealous. If it wasn’t for ME I’d be doing similar things but instead I’m living in my little bubble.
I recently pushed my limits, stepped outside my bubble, by slowly walking round a shop on crutches. My bubble burst. This was too much for my body to handle and I payed for it with a few days of worse health. And it hit me. My life is so incredibly limited. It’s the school summer holidays now and that means I probably won’t be venturing into the city centre for the forseeable future as it will be too busy. If we go out to the shops by car, I can’t walk around the shops even with my crutches. I need to use my wheelchair. I had already accepted this, prior to the decision of walking around a shop on my crutches. But I only decided to do it because I felt ready. I felt my bubble could expand and this would be manageable. Yet I was wrong. And that, that is what takes some adjusting to. To accept that I misread my body, and pushed myself too far, bursting my bubble. The freedom of walking slowly with crutches around a store has been snatched away from me again. The fact is it’s not worth the few days of horribleness that follows when using the wheelchair would allow me to continue my ‘normal’ routine the following days; the days wouldn’t be written off.
When my bubble has burst there’s only one thing I can do; pick myself up, brush myself off and start rebuilding my bubble afresh. I can’t deny a few tears may be shed, a few anrgy words said or written down but ultimately I pick myself up, and get on with repairing my burst bubble. Recreating a routine that I can manage. Focusing on all the things I can do and am doing. Not what other people can do or are doing. Through the years my bubble has become tougher, more difficult to burst. But it’s far from puncture proof. I’m not that strong. I don’t think anyone is. Realising that some part of your life has been taken from you by a chronic illness isn’t something you can just sweep under the carpet and ignore. You’re forced to deal with it and the changes it brings. Ultimately chronic illness becomes a way of life.