Fireworks Fizzle

Wouldn’t it be lovely, I thought, to go to a bonfire this week and see a fireworks display? (Bonfire Night, Guy Fawkes and all that).

Then I remembered 4 or 5 days have passed when I haven’t felt up to having an assisted bath.  How am I going to be up to going out, in the cold, surrounded by lots of people and noise and stimulation, when I can’t even manage to plonk myself in a bath and be washed?

I suppose it’s because fireworks are something I can watch and enjoy, passively, along with my husband and others.  I want to be bundled up, wheeled out and shown something outside of the everyday.

But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.

I’m wishing to go out for a meal, or just eating anything I want to just for one day.  Can I just have normal stomach and bowels for one day please.

I found myself daydreaming this week about what I would do if I was 100% recovered right now.  I saw myself doing so many things and the more I did the more I wanted to do.  Drive to my mom’s and do all those jobs that need doing, drive to my dad’s and help him lay that terrace and do all that DIY he can’t do right now, spoil my husband, clean my house from top to bottom, look for a job, catch up with friends and family, paint and sculpt all day long, make love.

No wonder my mind is whizzing with a hundred different thoughts yet I lack the oomph to make any sense of anything.

Do I cope well living with ME/CFS? Maybe.  Do a thousand things never happen and everyone just has to live with that? Yes.

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7 Responses to “Fireworks Fizzle”


  1. 1 ashysheela November 6, 2009 at 12:45 pm

    only buddhist monks can live without wanting, and it is a full time job for them to stop/manage/liberate themselves of that desire, if they do actually manage it! What hope do we have?

    I hope you get a mini holiday from symptoms soon – and a bath 😉

  2. 2 Jozephine November 6, 2009 at 5:47 pm

    I’m not as severely affected by CFS as you are and I haven’t made it to the fireworks either. I’m just too pooped today. But I really wanted to go and, like you, experience something ‘out of the everyday’.

    I’ve been remembering bonfire nights of my youth where I could do a full day at work, meet friends at a pub, go and stand in the cold watching the fireworks for two hours and then walk home.

    Somebody American said, it’s the ‘chronic’ in the illness that gets old. I’m tired of the juggling of activities, of the forced resting, of missing out, of not pulling my weight. It’s relentless. I get better times in between and I’m thankful that I’m no worse than I am.

    I like Ashy’s comment about the Bhuddist monks not being able to liberate themselves from wanting. And I too hope you get a break soon.

  3. 3 Shelli November 6, 2009 at 6:10 pm

    The news of XMRV has sparked that in me. I find myself suddenly thinking of all the things I’m going to do if it proves to be the answer, and I get well. It’s a dangerous place to go, I’ve decided. It definitely makes me impatient, and all that zen-like acceptance just goes right out the window. I’m not ok with CFS today. I hate the thought that tomorrow, I’m still going to feel this way … and the next day … and the next day …

  4. 4 Sue November 6, 2009 at 8:41 pm

    Sorry you couldn’t go out and enjoy the fireworks. I’m pretty fed up with the limits right now, too, as I’ve been much worse than usual this past month.

    The CFIDS Association of America just put together a video clip called “What Would You Do?” made up of people with CFS/ME saying what they would do if they were suddenly 100% cured tomorrow as part of their new Solve CFS campaign.

    http://www.youtube.com/solvecfs

    I would go hiking with my husband and kids for hours, all day even!

    Sue

  5. 5 Alyson November 7, 2009 at 12:21 am

    I dream all the time about being 100% recovered, too. I would go to the opera or see a Broadway show. Wishing you good health…


  1. 1 Passing and pretending « Ashy's Blog Trackback on November 6, 2009 at 5:15 pm
  2. 2 Simple Dream « Blue Coffee Mug Trackback on November 8, 2009 at 6:23 am

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