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Chronic Illness – The pain of not knowing. September 18, 2011

I’m an optimistic person by nature, my glass is half full, I look for the positives, every cloud has a silver lining and all those other clichés; but sometimes I think one of the hardest parts of a condition which is remitting and relapsing is the not knowing if and when you’re going to improve, stay the same or get worse. I feel like I’m living my life waiting to improve and while I am still living, making the most of the energy I have, I am putting off a lot of things, waiting until I’m better, or at least a bit better. If on the other hand I knew this was it, that this was as well as I will ever ge then I’d stop waiting and start doing the things I really want to, like travel, go in a hot air balloon and various other things on my bucket list.

When you have an illness like ME/CFS, you have to weigh every action: can I do this, how will it affect my health, will I suffer in the short or long-term? Is it worth the risk? If I do this activity, watch this film, see this friend, go out for this meal, will I be okay, will I be pushing myself too much and how much resting will I need to do before and after? It’s a constant balancing act to keep the scales of energy even and level. I wouldn’t mind this so much if you saw a marked improvement in your overall health; but personally I’ve found I can pace myself and maintain my ability level, I just don’t seem to be able to make significant improvements.

Don’t get me wrong I’m doing so much better than when I was bed bound, life is unrecognisable and I’m very grateful for that. I’m also aware that there are lots of people much worse than I am; but there are also many people who are better than me and millions who aren’t ill at all. The majority of people take good health for granted, so at times it’s hard to be grateful for abilities which if others had to live with, they would find almost unbearable.

I know I could have something much worse, that there are people who would do anything to swap conditions with me. I just find the concept of being grateful for not being as ill as someone else rather odd and difficult at times, when all I want is to be well or to be given some kind of schedule, a timeline…. you’ll be at this ability level for so many days/weeks/months/years, then you’ll go up/down to this level and that will last for…. Or just to know this is it, this is the best I can hope for and I can then decide which dreams to follow now and which ones to let go. I know that wouldn’t suit everyone; but for me I’d find it much easier to live with.


3 Responses to “Chronic Illness – The pain of not knowing.”

  1. hiddenlives Says:

    Your post is thought-provoking, thank you. I, too, live with this thing and all it’s ramifications – have done for 20+ years now. I get what you’re saying in every line.

    In your last paragraph you’ve said something very poignant with which I can only come to terms by saying that I have seen some things that Edgar Allen Poe and would be challenged to dream up – and having seen those, I still say that just because there are far worse things, doesn’t make this thing an easy thing.

    I used to say I could deal with anything – as long as I knew what it was (uncertainty being my downfall) and look what illness I get…

    Think someone is trying to teach me something?

    May this find you having one of the better days.

    • Claire Says:

      Thank you so much for your comment and the affirmation. It’s such a debilitating illness and so hard to understand as a sufferer, it must be even worse for people on the outside. You sometimes look at other people with the condition and feel like they are coping so much better than you are, that they have it all in their stride. It takes courage to admit you’re finding life tough and then you connect with all these people who are feeling the exact same way; but for some reason we all try to hide it. Thank you again for your comment and I’m off to check out your blog!

  2. […] one of the things I particularly struggle with in relation to my post about knowing how long I’ll be ill, if I’ll ever get better. I’m putting off […]

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