Thou art more temperate

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.

13 thoughts on “Thou art more temperate

  1. Hi,

    There really is nothing like a chronic illness for making one mellow out.

    Thanks for your beautifully written post. As always it is great to read about how well you are doing and what is still/no longer a struggle.

    It is funny how our thought patterns change. I start to get agitated and stressed when I see someone needlessly standing up and have to tell myself to relax and stop worrying…not everyone gets a nasty payback from standing or sitting for too long.

    You are a great inspiration. I am so glad you are feeling better.


    Sarah B.

    • What a lovely, eloquent comment! I know how you mean; although I am feeling far more normal than I used to, pacing is still something I do without even thinking (and I think I still need to – I was going to write about that but I don’t think it is the same as the other restrictive things I used to do).

      Hope you are getting on well:)

    • Thank you – and thank you for the RT too!

      Ah I’m sure my thoughts aren’t normal – but they probably never were!


  2. Hi Billygean. Thanks for this thoughtful post. Sounds like you have tackled the issue of anxious thoughts in a very practical and effective way. I don’t know if you’ve heard of amygdala retraining which may also help…there are some relaxation tracks available on itunes that seem helpful. You’ve reminded me I need to back of discussing symptoms with my daughter. Again. I seem to go up and down with this depending on how I’m trying to help her at the time which I’m sure is ultimately not helpful! Glad things are looking up for you – I hope to get her there sooner rather than later….but I know we’re not in control!

    • Hi Annie,

      Thanks for your comment! Your website is very interesting. My Dad was really helpful during my illness – let me rant when I was completely bedridden but now gently steers me away from discussing it too much. I think it’s a fine line as *sometimes* I still need to say “I am worried X may happen” and then move on, but it’s important not to get into the dangerous overanalytical territory. How is your daughter doing?


      • Thanks for asking. Mmm not as well as I would have liked to see considering it is the end of 2 weeks of school holidays but she’s still a lot better than lots of people with this illness. For her the cognitive symptoms have really started to make themselves felt recently so I suspect we got a relatively early diagnosis and she is only now reaching the nadir of the illness. I sure hope we can only go up from here anyway. Have a great week. It’s lovely to read about your joy in being able to do (and eat!) things you couldn’t before.

      • I think I got off quite lightly with not really suffering from cognitive symptoms, but I guess the advice is similar: if it makes her feel ill she should do a bit of it but not a lot of it. That was sort of my philosophy. Sometimes the break lets your body relax and you’re worse at the end of it, I definitely know that feeling!

  3. Hey Billygean-

    I think it’s so great that you are learning to handle your anxious thoughts! …and that you are feeling well! I find myself getting depressed lately😦 I know I should do my best not to focus on anything CFS but the longer it goes on the more depressed I get- sorry to be depressing! Did you struggle with this?


    • Hi Sipora:)

      I think in the first year I probably was depressed – like most people would be. I have a theory though that most tend towards the depressed or the anxious/keyed up and I am definitely the latter. I would say that just because you’re in a shitty situation doesn’t mean you have to put up with mental health problems; yes, you probably are justified in being depressed but there ARE ways to be in a crappy situation without being depressed and you deserve to know about those coping methods. For example, I can feel “meh, wish I was healthier” and I can feel “life is really rubbish and I hate being ill” and the latter is more unreasonable than the former. So I think it gives your body the best ‘shot’ at recovering if you deal with the mental problems too as you have more hope of controlling those.


  4. My husband’s sort-of-cousin has ME/CFS (am I right in back-slashing them..that the diagnosis for neither is very clear?). Also a type A from the sound of things. I have been telling him about your recovery path and the various tests and things you have had…I wish I knew her and I’d send her this link in a flash! Great to hear your thoughts are calming.

    • Ooh that’s a shame you don’t know her better. Yes backslash is about right; my understanding is ME, CFS, PVFS and CFIDS are all same thing though lots disagree with me…!


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