it’s not rocket science…

… but it’s complicated.

There’s no formula, just trial and error. Stopping and starting. Resting. Re-framing ‘doing nothing all day’ as ‘pacing’. Considering being able to get out of bed before lunchtime as an achievement. Being paralysed with anxiety, unreliable, weepy. Pains in random places. The room spinning even when I’m lying down. Never feeling good enough for the people in my life.

You would not believe the paperwork that goes with having a chronic condition and being unable to work, the justifying one has to do, as if one had chosen this lifestyle.

‘Can you …?’Β  ‘I plan to.’ That fudge of a yes is the most I can say; there’s always the caveat that I may not be fit for it.

I would love to know that doing X + Y = too much. Life would be so straightforward then. Nothing is that simple. There are too many variables, all of them unpredictable.

There are many, many things I want to be doing. I can only hope to do a small fraction of those. Often I feel frustrated because I can’t do all the volunteering. Today I’ve been pacing the house, wound up to the highest of doe because I can’t do everything for a girl that she wants me to. (I know that if I were well and in work I wouldn’t be able to do it either, but I wouldn’t have the crushing guilt and anxiety then.)

Pesky ME. It’s not me, it doesn’t define me, but it plays waay too big a part of my life.


19 thoughts on “it’s not rocket science…

  1. The unpredictability of this condition is SO annoying. There are always those moments of “But I did this before and I was alright afterwards, so why can I not do it now and be alright afterwards?”, as if this stupid illness operates with any basis in logic. I love that picture at the bottom of the post – totally sums me up too πŸ™‚

    1. No rhyme or reason- we all just make it up as we go along πŸ™‚
      Congratulations on your HUGELY impressive end of course score! That is properly awesome

  2. And so she writes to slay the blind dragon, that invisible greenish choking fume……Exposing oneself is ‘big F’ hard, yet you did and do so despite. Call it unplugged or naked -whatever you call it, it honest and it is REAL. If there is someone out there who could read this and not feel admiration or compassion for another human’s plight, whatever that plight or condition maybe. Then I hope I never come face to face with such a beast. I know there out there lurking behind desks, pulpits, at the top of the pile, maybe even in my own head. I will remember this…..and so she writes about ‘it’, she fights back, as if there was choice to do otherwise.

    Thank you for this! Thank you for telling it, instead of burying it as many of us do.

    1. Somedays I can bury it, other days it just has to escape. If I stopped to think about it or edit sensibly, it simply wouldn’t happen πŸ™‚
      Thanks, Hudson x

  3. Hi Fiona, such honesty is admirable. Hope it helps. Wish I had your courage to open my heart and expose vulnerability. See that as a massive achievement many of us will never reach. Love and hugs to you. Have a peaceful weekend and hope we can chat on Monday ? Xx

  4. Hugs from over here too. And thanks for the telling of it as it is. Somehow it comes clearer that ‘being’ is its own value to us all, different from the ‘doing’ we all tend to focus on.

  5. As someone who generally enjoys good health, it is not always easy for me to understand how frustrating it must be to have a condition that limits and squashes your energies. This week, having struck by a viral infection that made me feel like a prisoner in my own life, I am probably that little bit more aware. Keep articulating it Fiona, as you say it doesn’t define you, and that is because you don’t let it.

  6. I think it must be quite natural to “beat yourself up” a bit with the guilts and regrets, but you have so much value just as you are. Not just in what you do or accomplish. I really believe that. And I send my hug, too. You must feel crushed by all those hugs! πŸ™‚ I hope you feel much stronger soon, dear Fiona. ox

    1. Debra, simply writing this/ letting it pour out helped enormously. It always does, somehow. I’m sure it’s to do with defining the issue making it seem more manageable, and helping me put some distance between the woe and me.
      Hugs are always welcome, thank you πŸ™‚

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