Sunday, 17 February 2013

The Balancing Act

Given that my blog has had 125 views from across 6 different countries in its first 24 hours (wow!) I thought I'd give you all something slightly more interesting to read than just a list of symptoms..
I thought in this post I'd describe the balancing act faced by those of us with chronic illnesses.
Some days you hurt and feel ill but your illness only crosses your mind on occasions (I better not do that, it'll cause problems.. etc) whereas other days there's no getting away from it- it's a constant battle- you spend hour after hour lying in bed in agony, wondering when the pain will reduce enough for you to get some much needed rest or sleep. You get cross with yourself for doing too much, or you get frustrated because you've done nothing out-of-the-ordinary as far as you can see. You start questioning why you feel like you do, why no-one can tell you the exact reason for this happening, why you can't have something better understood that doctors could cure or treat with a few tablets, why you should take the tablets you are on if you still feel like this, when will things get better, why is this happening to you.. but they're all unanswerable questions.
The vast majority of days fall somewhere between the two, and this is where the real art to managing a chronic illness lies. It is these days that you have to judge what you are capable of, find a balance between activity and rest, guess whether doing x will cause extra symptoms tomorrow, choose whether you need to get extra rest because of something you need to be relatively well for in the future.. It's tricky, you improve with time and practice but still make plenty of mistakes, resulting in more than enough of the bad days described above. It's hard to stop yourself constantly thinking: 'I know I'll hurt but it'll be worth it', particularly when you're already in pain so 'what difference is a bit more pain going to make?', which is a natural but unhelpful response (although it is totally necessary to push the boundaries to have a life sometimes).
I'm at a stage at the moment where I'm not getting the balancing act quite right. I'm doing too much and constantly activating my condition long-term causing extra symptoms to accumulate. Part of this is due to my own denial (it'll be fine, I'll be fine, I could do it before...), part is due to a worsening of my condition and me continuing at the level of activity I could do before, and part is life (I'm studying and although I have support I have a timetable to stick to, and I can't get too far behind).
It may seem sometimes like I'm not making an effort to do something, join in or go somewhere, but the truth is that I just don't have enough energy spare.. I don't enjoy being in bed doing nothing but for me it's sometimes a necessity. Please do always give me the choice though, it's always better to be invited :)

The balancing act when dealing with a chronic illness (in her case lupus) is described much better by Christine Miserandino here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Thanks for reading! :)

1 comment:

  1. Back in 2009 I finally managed to get the balancing act down and my health was great for about 2yrs, but I started acting like I 'had' ME, not 'have' ME, so I had a total relapse. I'm more or less how you've described it now; struggling to get a balance but not really managing it. I wish us both luck.

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