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When pacing is not working

Posted , 16 users are following.

julia85224
julia85224

Hi,

I was diagnosed with pmr in May and reducing steroids, down to 10 mg.

I have had amazing support and information from many of you, as I am in denial most of the time and still think I can be super woman.

I have however tried very hard to pace what I do, so Sunday, and Monday did very little in the way of tasks, as I wanted to finish floor boards on Tuesday.

Old property gaps in floor boards, so armed with filler I agreed with myself I would only do 6, this took a couple of hours all ok.

This morning felt like I had been hit by a truck, arm, legs, hands hurt, so tearful spent most of the day in bed.

Was it too many boards or to few days resting before hand.

This I know is trivial considering what others on this forum are going through, just feel so sad, I have wasted a beautiful sunny day in and out of bed.

I so hope this gets better.

Hope you are all well.

Julia

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  • julian.
    julian. julia85224

    Posted

    "I so hope this gets better"

    Hang on to that thought. It does.

    I'm not sure I ever accepted the pmr. More a sort of acceptance that I have a problem, and a continual search for how to manage my way around it.

    The good news is that two years on I can do lots more than when pmr first arrived. Still not what I could do before, but getting there.

    Its not just whether to do 2, or 3, or more boards before having / needing a rest. Its also how to fix the boards.

    Easier to explain with a different example. Part of occ health assessment after back op. Lift a book onto a shelf, just above head height. Well that's easy ..... Now do it ten times. Oh dear.

    So, not only do I pace myself, I changed how I do things.

    I don't know if fixing the boards requires drilling. I bought my first cordless drill - for me the greatest benefit was not having to fight the cable, it hurts. Just a small example, but a whole lot of small changes add up. I'm contemplating buying a cordless "palm nailer" - hopefully easier than a hammer.

    I'm down to 3mg/day of pred now. Struggling to get lower. I can walk 10km in the hills relatively easily. The stiffness of exercise is strangely wonderful and, for me, very different to the pmr symptoms. Two years ago a km was too much, and a lingering doubt as to whether I could get home on my own.

    I write lists now. Partly because my memory doesn't work the way it used to. The times I previously had to write lists was when under stress. And if I don't get to tick anything off the list I make it a longer list of smaller tasks. Then I can get lots of ticks. smile

    Its not static. Its not something that's arrived and that's the way it is. It changes over time. Changes because that's what it does, changes as we can reduce the pred, changes as we manage ourselves differently -----------  I nearly said changes as we manage it differently, but that's perhaps the key, we can't manage it, just work our way around it with the help of the pred, and let it run its course.

    I think of life with pmr as a journey. Not something I'm stuck with.

    I don't know what tomorrow will bring. But hopefully the pmr will be one more step towards remission, and hopefully today's little changes will make tomorrow easier.

    • julia85224
      julia85224 julian.

      Posted

      Hi,

      Thank you for you're reply, apologies for late response, another getting up late morning.

      You're comments are much appreciated and I hold on to thought that I will be able to do far more than I can at the moment, but maybe not as much as I used to.

      It is the 'if I do this task I can't do the other one as well" process I can't get used to.

      Cleaned windows yesterday, really wanted to mow lawns as well, but sat with my colouring book instead, Grrr,

      so frustrating and so not me.

      I have the same thought regarding walking, always walked, now I avoid as I too have this dread of not being able to get home.

      Things will get better, as long as I dont have too many more "blob" days (in bed and fit for nothing) I will be fine.

      Thanks again for you're kind words, and I hope you are well.

    • EileenH
      EileenH julia85224

      Posted

      It's also a case of prioritising and assessing whether something MUST be done. I would probably have plumped for the lawns - they keep growing and its easier to do them sooner rather than later. Windows? They'll wait and can be done when wet - grass can't! Even my cleaner only makes a fuss about doing windows twice a year. My attitude is that if I can see out that'll do!

    • julia85224
      julia85224 EileenH

      Posted

      Hi,

      As always wise words,

      should have done lawns, as it is now raining.

      Lawns tomorrow maybe.

      Hope you are well.

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