Is PMRGCA invisible?

I've had this condition since May and I feel that family doesn't give it its due. The high doses of prednisone,( 60-40 mgs three times so far, because of returning symptoms ) have so many side effects. I can manage four hours of activity in the morning right after I take the Pred., but then I need to take a nap and rest the rest of the day. I am too fatigued to watch grandkids or grand dogs. My driving skills are problematic and I want to refuse transporting the grands because of lack of concentration and slow response time. I have said no but am not heard.

Name the Pred. side effect, I have it, from the lack of sleep, nervousness, fatigue, irratibility, muscle weakness, etc. Doesn't the family see my moon face, swollen black and blue eyes, the fact that I can't get up from a seated position. I'm not looking forward to years more of this!

26 Replies

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  • Poor you, I can sympathise with a lot of the things you are feeling as an awful lot of us will, I too can't have my little granddaughter on my own as can't lift or carry her, other grandkids older and only see them few times a year anyway.

    I have explained as much as possible to friends and family and given them the "spoons" article to read, this I think explains how we are inside and how limited we can be but some can't take in in or don't want to

    Luckily I have not had to up my pred so high as you as only (!!) PMR, so hopefully that level will reduce again soon

    Do hope they start to understand and appreciate what you CAN do soon

    This forum with people who know how we feel is such a blessing for us all

  • I have four young teen grands nearby and they don't understand why I don't visit or chauffeur as I once did.

    What is the "spoons" article ? Sounds like something my family could use.

    This forum is so supportive, thank you!

  • healthunlocked.com/api/redi...

    Hope this is the right link for it, if not put "spoons" into search box at the top right of screen.

    I sure have run out of spoons today, been a bad one!!!

    C x

  • "The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day."

    and this certainly finds it

    butyoudontlooksick.com/arti...

  • Printed this off, wonderful - made me tearful. Thanks for the link

  • Thank you Nannie-C. your comment about Family and friends not noticing what we CAN do is so true, they are so keen to point out what we can't do . Last year I was told I was Pathetic by a Family member in front of a lot of people at a BBQ.. I just wanted the ground to open up and swallow me up..This was a Daughter-in-law that I helped with 3 Grandchildren. She has no idea how this horrible PMR makes me feel .Some mornings I struggle to even put 1 load in the washing machine .After about 4 hours I need a rest and make myself have it .Good Luck to anyone suffering with PMR/GCA..this is a wonderful topic today and will make interesting reading especially the Spoons link ..trish 29

  • I think that some family members don't want to accept we aren't the person they loved and depended on for so much. They too have to understand that this is where we are now whether we and they like it or not!

    Most people and some friends don't understand the disease and what it can entail, as it's not a high profile illness is "unseen" on the outside of us

    We as sufferers maybe have to take on more education about it and tell our story to a more widespread audience

  • Yes to some extent I agree with that, but I have had PMR for 13years now and have done All I've been asked by the Medical teams..My second to youngest Granddaughter Orla has grown up with me with this condition and is now 9 years old ..she's very loving and caring and Always knows how I am when she comes to see me,when she was little she would say " let's stay home today Nanny we can go to the shops another day.. I get lots of hugs from her..The others care but probably think we you say ..that's not my Nan . I do get comfort from the posts on this Forum and when I go to my Support Club at Chertsey...Thank you for your Reply ..Best wishes Trish 29

  • Oh my. How very mean. I am sorry that happened to you. For your sake I hope you can forgive her. She is very ignorant.

  • Hello bunnymom. I've learnt to forgive but we're not close anymore and she's gone on to become a Business woman ,so no time for Mum-in -law. I will admit I miss our chats over a cuppa. Unfortunately my Condition has got worse as well but I keep fighting on. The main thing is that I get the love and support of my Sons and Grandchildren. My partner supports me as much as he can but gets frustrated with it as well and tries to push me to do more than I am capable of but learns his lesson when I get tearful or can't get up next day .. Best wishes trish

  • Thank you, just printed "spoons" and hope that helps my family understand what I'm feeling, physically and emotionally!

  • Do you also have PMR symptoms? This may help them understand how disabled you feel:

    healthunlocked.com/pmrgcauk...

  • Try doing LESS than the 4 hours - and then you may have more energy later, after you have had a rest of course. And with determined resting and pacing you may find the flares reduce and so does the dose.

    GCA is a serious illness - and needs to be treated as such. Can your doctor not explain to them? It is a problem about driving - really I suspect we shouldn't drive when on high doses but that limits you so much too.

    Pred effects - there are 82+ listed - I do hope you haven't got them all.

  • You should have heard me at 3:30 this morning when I couldn't sleep and tried to unclog my toilet left by my young teen granddaughter!

  • Then she needs an earful - as a teen she is old enough to understand - and to be civilised about using a toilet.

    It sounds harsh - but at present it has to be ME, ME, ME. They are all big enough and healthy enough to get on with it.

  • Never thought of suing less in my four hours.. Always figured do as much as I can in those four hours and spend the rest of the day resting. Will try it tomorrow when the plumber comes!!

  • I was never ME, ME, before and was jolted when someone said she wondered if not being able to say no was a precursor of PMR. True for me ( and I blame flushable wipes for my clog!, )

  • Yes - should be made illegal because whatever they are - they sure as what's'it aren't flushable! I have a bin next to the loo - and if I had that problem it would be a plumber (I know, like hen's teeth in the UK) and she'd get the bill.

    Too much to hope she's got to the save the world stage is it? That really does get their attention about that sort of thing!

    Lots of us were the "go to" person in the family - maybe it is because it is noticed more or we notice it more - but there aren't many lazy people around here. Except me - I don't do anything I don't have to...

  • My grand girl just turned 13 and isn't saving the world yet!

    I was the " go to " person for my brothers and sister, even in our 60s and 70s. Moms condition hasn't sunk in with my three and their families yet. I secretly love that they need to find someone else now. I'll put my feet up and read a good book or learn mandarin ! Thanks for your encouragement.

  • Get a note from your doctor saying you should not drive passengers in your automobile for now. I got out of jury duty but needed a doctor's note saying I lacked the concentration needed. :D And I'd say driving young people when you don't feel capable is a lot more serious.

  • What a good idea ! Will do that at my next appointment, thank you!

  • I bookmarked this a while ago. Bits of it speak to me.

    vivsacademicblog.wordpress....

  • made a copy, thanks for your encouragement

  • Must read more of this - viv is a member of the VasculitisUK forum on here. I hadn't registered she had a blog...

  • Hi MGeorge

    Sorry to hear you are struggling so. I have been on the high dose also, and suffered as you have from all the side effects, which added with the symptoms of GCA/PMR is completely life changing and awful.

    My husband and daughter are great, my two (adult) sons don't really understand. I think they do then they say something ridiculous, like 'oh you bought the car I thought you would walk round' ( a couple of miles each way + the visit and grandchildren!) - when I say I couldn't manage it they look at me very strangely.

    I knew I was losing concentration driving, I fell asleep at traffic lights one day! So reduced hours at work, but have now given up completely - I couldn't cope with the stress and work load - especially with Pred Head!

    I have 5 young grandchildren, I often get asked to babysit, like you I physically cannot manage picking them up etc. I will have them for max 2 hours, but once again, I don't think my daughter in laws or sons understand, through no malice just lack of knowledge.

    Hang in there I am 18 months into it, I am far from well but much better than I was a year ago. Put yourself first and be kind to yourself, I fought it and had 3 flares, since I have given up work and rested when needed I seem to be reducing successfully.

    Best wishes.

  • Thanks for the "atta a boys!