I never really thought about it at the height of my illness, but I guess there is an emotional recovery that comes from being ill. This is something I’ve been vaguely aware of throughout my recovery, even written about before, but that which I’ve been continually surprised by whenever it’s reared its head.
Thankfully a lot of the emotional ‘patching up’ that has to happen does seem to be happening naturally.
Over the past few months, particularly in France, amongst the waxy vineyard leaves and the high, bright, blue skies, I have become increasingly aware of my thoughts. And the weirdest part is that it took having anxious thoughts about other aspects of my health (the tests I went for back in May/June which amounted to absolutely nothing) to recognise that some of my thought patterns aren’t entirely normal.
I used to theorise that I had spent so much time worrying about CFS that, when I started to get a bit better, I had a lot of free-floating anxious thoughts that would scout around looking for things to be anxious about. Now, having observed my thoughts over the last few months, I am certain that this is the case.
And so when my health was not brilliant when we went to France, I was particularly aware of these thoughts. One of the weirdest parts was that, while I was aware I definitely had anxious and obsessive thoughts about the medical tests I had undergone, I didn’t actually recognise that I was having WAY MORE anxious thoughts about the CFS. I always figured I had a chronic illness and it was natural to worry about it. Which it is. To some extent. But also, there are people in the world who probably wouldn’t worry too much.
And so with awareness comes change, and in France I was actually able to keep track of my thoughts. I realised that – although we do our best with pacing, reasonable diet, etc – I have an illness which I am not actually in control of at all. I know what might exacerbate flares, but the triggers aren’t consistent. I know what to do when it’s bad to get it better, but it takes varying amounts of time and my symptoms are often totally new. The truth is, it goes through good phases and bad phases (though I am more able to function through the bad phases than I was), and it mostly is a mystery as to why.
And so whenever my brain went “what’s this symptom? Is this the same as this time last year/the year before/2008? Is it getting better or worse? What if X happens? What if X doesn’t happen?” ad nauseum I actually addressed each of those thoughts with “I am not in control. I am not going to worry about it.”
I think holidays are good for things like that because you can make a concerted effort to be different and to not let thoughts ruin your time. But I’ve kept it up since getting back.
I’m not saying I was being neurotic. In fact in my position, I think a lot of people would worry. And I knew that worrying about things I couldn’t control was useless, but I didn’t know how to stop. It’s quite remarkable. Very early on in my illness my GP told me to observe what mellow people are like and become one of them, and I think I have finally managed to really take that advice on board.
MadFather had a barbecue at the weekend. I pretty much sat with EarlyNiece the whole time in the balmy shade, her tiny body curled against me. Some of MadFather’s friends who hadn’t seen me for a couple of years were there, and their surprise at me drinking caffeine, eating wheat-y things off the barbecue, eating dairy, and so on, made me realised how restricted my life has been in the past few years. They weren’t for nothing, I know that, but I think when everything is scary and your body is going wrong, it is easy to respond in quite a strict fashion, e.g. it might be gluten that is causing me to be ill therefore I won’t ever eat it”. Or, “I need 11 hours’ sleep a night therefore I might tell the post man never to ring the doorbell before noon.” And those things needed to be done to some extent – when I was too ill to walk it really was important to make HUGE adjustments in my life. But, now? I may just be saying this because my lows are a lot less low (or at least shorter), but I think that’s kind of an extreme position to take.
But I find I am thinking with much more of an open mind about my illness and the choices I make. I was and am obviously physically ill, but what I want to say is that sometimes other things happen as a result of illness which complicate the original illness. My sleeping was a perfect example. The fact that I can now go to sleep on demand and need less sleep than I used to has definitely brought me out of the weird CFS demands and back into the world of normal people who can stay over at people’s houses without being awake into the early hours, can get up early, or late, and not have the next night’s sleep affected, and who can have a quick cup of coffee or a few slices of toast in the morning if they didn’t sleep so well because whether you slept well or poorly doesn’t matter to the extent that you need to have 4,000 thoughts about it.
And as a result of the above healthy thinking patterns, I find the things I have been advised to do (like not really discussing symptoms) are coming naturally to me. Rather than not discussing the illness in the hope that paying less attention to it will mean it buggers off, I find I don’t want to discuss it. It helps that I now have a lot more in my life – almost as much as a normal person – and I have an identity now that is multi-faceted once again, but that doesn’t involve illness at all.
And so I am patched up and almost normal again. But it’s just that; a patching-up exercise. And while in so many ways I am a better person who listens more, has perspective, does not stress insanely or need to achieve all the time, I have inevitably lost some of the good bits too. Where before I was a cohesive whole; my body and my thoughts worked without any TLC, now, I am a very well patched-up vase; visibly cracked, but stronger for it.