When pacing is not working

Posted , 16 users are following.

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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  • Posted

    So sorry you feel bad.  Get lots of rest for the next few days.  Can you go vegetate outside?  Last year I hand sanded my bedroom floor.  Yes, with pieces of sandpaper, no machines.  It took about twice as long as expected, based on previous experience.  This year, although at a much lower dose of pred, I would not dream of tackling such a task.  Last year I didn't know any better.

    I'm not sure resting beforehand is particularly productive.  You can't get a useful extra night's sleep before a transcontinental redeye can you?  I think it's likely better to do much less, but perhaps every day.  Little and often.

    • Posted

      Hi

      Thank you so much for youre reply.

      Will rest up for a day or two, then perhaps 2 floor boards at a time.

      Just feel like screaming, wouldn't do any good, it is what it is.

      My new mantra ( which my grown up daughter's think I am mad saying)

      is " We are here, we do what we can, and treasure what we have".

      Hmn, think I need to say that a lot after today.

      Hope you are well, take care.

      Julia

    • Posted

      As another Patient finally got the message and treated herself like a 'Precious Princess'  - we all wanted to be a Princess when we were little  (except me I wanted to be a coal man).  Now is your chance. cool

    • Posted

      Bless you,

      That did make me smile, too many wrinkles for a princess, but definitely going to learn more patience.

      Take care

  • Posted

    Pain, stiffness and the feeling of not being able to cope with PMR, is never trivial to the one experiencing the symptoms. So don't you ever apologize for your feelings. Only ones that are experiencing the same symptoms, can sympathize with you. Accepting our limitation and learning how to pace ourselves is the hardest part of PMR. We no longer can go at it all day long. The life we once lived is a thing of the past. I know, some have gone into remission and gotten off prednisone, but in my opinion, I need to prepare myself for coping with PMR until I die, if Im one of the lucky ones and go into remission, I will gladly celebrate my good luck. We have to keep learning and fighting, cuz the only other option is to give into the pain, stiffness and tiredness and just gI've up.

    • Posted

      I appreciate your spirit.  But one thing I've learned on this journey is that "fighting" isn't productive.  I've said elsewhere, so forgive me if this is repetitive.  I look on pred and PMR as a two-headed dragon.  Our task is to cajole those two monsters to head in the direction we want them to go - that is, towards recovery.  We can help in this task by being kind to ourselves, and one of those ways is to learn to let go of anger and sorrow.  I think we all go through a period of grieving for our lives, which have changed forever, but in the end there is so much we can learn to do to help ourselves get better, to help ourselves become stronger.  The hardest lesson I've had to learn is patience.  Been an unwilling student, believe me.    

    • Posted

      When i said fighting this PMR, I meant not giving into the depression and the feeling of hopeleassness. You stated it differently and with more clarity, in the following quote, which i copied. "I think we all go through a period of grieving for our lives, which have changed forever, but in the end there is so much we can learn to do to help ourselves get better, to help ourselves become stronger. The hardest lesson I've had to learn is patience."

    • Posted

      Hi,

      Thank you for you're reply.

      It hard for all of us, acceptance has never been my strong point, can't get my head to realize my body doesn't function at speed even very slow n some days.

      Can only keep reducing the steroids and hope for the best.

      Hope you are well

    • Posted

      "Can only keep reducing the steroids and hope for the best"

      Yes and no - reducing the steroids alone is not the answer. Pred hasn't cured anything, it is managing the symptoms so you can have a better quality of life in the meantime while waiting for the autoimmune part of the disease to go into remission - it does in about 3/4 of patients sooner or later, up to about 6 years at most. So you can reduce so far - but not necessarily to zero. The pred itself may make what you want to do harder - depends, not all of us have those sort of problems. But it is the one thing, used properly together with lifestyle adjustments, that will allow you a relatively pain-free life for the next few years. 

  • Posted

    this is the frustration that goes along with PMR and pred......I started out this

    a.m.feeling well and mid-morning crashed....no idea why.   I had sed rate

    test done this a.m. and don't have results yet. General pain pretty much all

    over.   I have some back problems and never know for sure what is causing

    which pain.....I'm with Jeanne 333.....I will be 80 my next birthday and

    sure I will be on some dose of pred the rest of my life...just hope it's low.

    when you're told to pace yourself how would we know what is just the

    right amount?   Hope the days get better for you.....

    And no.....your pain is not trivial.....none of our pain is trivial.....

     

    • Posted

      Thank you for you're reply,

      I so hope you feel better soon, one of the hardest things I am finding is the un-predictability of this illness, as you say you can feel ok, then for no apparent reason, you're body feels like lead and in my case have to sit or lie down.

      Let's hope we all have more good days than bad.

      Take care

  • Posted

    You would have done better to have done 2 boards at a time, Sat, Sun and Monday.  So about 30mins a go.  2 hours - no wonder you are feeling rotten.

    Pace yourself, you can't win - it just comes and bites you harder.

    • Posted

      Hi,

      Thank you for you're reply,

      I know you are right, a lesson learned.

      Before pmr I wouldn't have thought twice about doing the who floor, very different way of living, so not dealing with it very well.

      Two floor boards at a time, from now on.

      Hope you are well

    • Posted

      I am in remission now for 6 years.  I had GCA for 5 years.

      I also help to run PMR&GCAuk North East Support.

    • Posted

      You are learning how to cope with your fatigue and stamina. We can also stay hopeful that we will be one of the ones that go into remission.
    • Posted

      Lawdy I hear you Julia - we were in the middle of a full blown renovation of our house when I got PMR. Everything just ground to a halt, with just two rooms and the garden to go. Talk about FRUSTRATED!!! I've JUST started working on the first of those two rooms. A couple of hours on the weekend. It's very slow, but it's getting there. I can't wait to get carpet down after four years of freezing my feet off in the wintertime!

    • Posted

      We were planning to build an extension to our house (what the zoning allowed in place of a separate grannie flat).  For a variety of reasons, not least my undiagnosed PMR, we called a halt to the project, but not before our entire backyard and garden had been dug up.  

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