Frustrated !!

Posted , 14 users are following.

Hi all,

I am starting this under a new thread as I am fed up with this Pmr and how it is affecting my life :? :evil: :cry: .

Last week, as some of you may recall, I had a flare up that required me going back to 15mgs from 11mgs....and all seemed to be going fine for about two days, but I have had a steady decline since then :x

Today my legs, arms and shoulders are all aching and stiff and I have had zero energy. It took me an eternity to get washed and dressed this morning :oops: and although not as bad as I was before diagnosis, it is the worst that I have been since this journey began.

Sorry for being such a \"moaning minnie\", but no-one else understands the frustration and pain that this illness brings and I am so fed up wit not being able to do what I want, when I want :cry:

hope the rest of you are faring better.

love, Pauline.

0 likes, 74 replies

74 Replies

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  • Posted

    Absolutely great Pauline :D

    Just shows how much a sense of humour (and talent) help.

    Thanks so much, Green granny

  • Posted

    Dear Pauline, What a LOVELY poem ! Bless you, you have cheered me up on this day, one of the bad ones..love Granny Moss PS Glad you are feeling better. xxx
  • Posted

    Hi Pauline,

    So many thanks for that lovely poem, I think it sums up how we all feel about our friends on here, and how we cope with PMR (most of the time!)

    It certainly gave me a laugh this morning, which I can always do with. :lol:

    Sun is trying to shine here this morning, after listening to plenty of rain during the night.

    Love to all,

    :cuddle:

    Julia

  • Posted

    You are not wrong MrsO

    Pauline, we will give you credit if I can use it in our publicity stuff.

    Email me on this site and let me know if its OK.

    Such skill with words - wonderful.

  • Posted

    Hi Mrs K and all,

    Thank you all for your kind words and I'm glad that the poem was enjoyed :D

    I have not figured out how to e-mail anyone on site, but Mrs K, you are very welcome to use the \"POLY\" poem as you see fit.

    hope everyone is having a good day.

    Love, pauline

  • Posted

    Pauline - at the bottom left of a post someone has made are two icons. One has two people and pm in it. Click on that and a post box will open where you write a message just as if you were posting as usual but the only person who will see it is the person who posted the original post, not all of us. Does that make sense? An email comes to my emailbox to tell me I have a private message - I don't know if that always happens but I think something shows up on the My Space bit next to Log in/out when someone has written to you privately. Have a look!

    EileenH

  • Posted

    Pauline,

    How did I miss your wonderful poem :yikes: Lovely, funny, poignant, very accurate and had me laughing and going ahh at the same time.

    Well done Pauline - just what the Doctor ordered!!

    Love from Lizzie

  • Posted

    Hi Pauline

    What a great poem !!

    Hope you are having a good day today

    Had a good day Nordic walking this morning I just havent any stamina now so lagging at the back of the faster group but dont have to join the group who only do half the distance Then I spent the rest of the day with friends at my friends hairdressing salon ( Getting my blond bits put back in ) !! so its no wonder I still have a bit of a sore throat and cough as I talk too much !!

    best wishes

    Mrs G

  • Posted

    Eileen H.....thanks, I see how to do it now....blame the steroid brain :wink:

    best wishes, Pauline.

  • Posted

    Forgot to say - liked the pome!!!!!

    Steroid brain is a useful motive on occasions. Took me a while to suss it out too though. pm is a bit vague for us!! :roll: :oops: :lol:

    BR, Eileen

  • Posted

    Pauline, am sorry I missed supporting you on your down days as I have had a few bad pain days myself so have not been up to much...... loved the poem and made me grin from ear to ear so thank you so much for giving me something to smile about this morning :lol: :lol:

    I do so hope you are feeling more positive about this PMR...... it is hard to take on board a new 'way' of life isn't it when you are used to buzzing about doing everything...... but as some of the lovely ladies said to me a week or so ago, celebrate what you can do, don't mourn the things you can't :D

    That has helped me begin to sort out my 'mind set' and during my last two bad days ( had swelling and so much pain in my right hand, pain everywhere else :roll: ) when I could not move about much and just rested and kept the house very warm..... couldn't even begin to think of coming on here as my hand so bad couldn't do much with it at all let alone begin to think about typing on the keyboard!

    Am now going to try to sort of catch up with everyone and hoping everyone upbeat and having a better time with their PMR. smile

  • Posted

    Dear Fifties Girl, I am truly sorry that you have such pain, but at last (please know I am sad you have the pain )you are the first PMR fellow that admits to PAIN IN THE HANDS ! I had pains in my hands, from the first moment I woke up with PMR sharing my body ! sad The pains were really terrible. I could not move a finger. I could not do ANYTHING !...I wanted to die ! But I have read about PMR reports etc. There is mention of pain in shoulders and thights etc. But HANDS are never mentioned and I began to think that it only happened to me. :? and it was impossible for me to wash or even put my knickers on... :oops: I have found an article on PMR and this is an extract :\" Often pain is quite severe...\"What an understatement...! :o Extreme tiredness (they can say that again !...

    DEPRESSION ..I go there and back several times...Sweating in the night..You can wring my knightgown out in the bath....LACK of ENERGY...They must be joking...I have to get a young lady to do the hoovering....and as for muscle power ? To think that in my youth I was

    Shot putting champion...( Is true ! ) \"Mild fever... \"Loss of appetite and weight ?...I eat as if it is my last meal on earth..and put on 7lbs in 7 months...How is that ? :roll: And general feeling of being unwell( 10 out of 10 for that one !....) :lol: I thought I could get some interesting response to this puzzle, and put my mind in a less :? frame. Love to you all. Granny Moss

  • Posted

    Hi Fifties Girl

    Sorry to hear you havent been feeling too good either Cant wait for spring and warmer weather

    What I often say to new sufferers on here is to record all your bloods doesage how you are feeling as sometimes just looking back you realise you have improved Whwen I had my first bout of PMR I didnt do this butr as I had old diaries I managed to work out bloods and doesage

    This time I have written down as much as I could I realised when looking back for Pauline as to when I also had to increase back up to 15mg how bad washed out and listless I still felt but 12mths later I have started gentle exercise classes and Nordic walking classes I realised when I looked back 12mths I wouldnt have been able to stand the cold and just the warm up exercises would have finished me off !! and yesterday we walked 2 miles

    Just dont try to do everything you did before and tell others you cant and indulge yourself a bit

    Best wishes

    Mrs G

  • Posted

    Hello fiftiesgirl

    Oh I'm so sorry to hear that the pain in your hands prevented you from coming on here and venting your feelings of frustration.

    Have you checked to see if there is a support group in your area where perhaps you could at least have telephone contact with someone who understands at such times when you are unable to type?

    I feel it's very difficult for PMR symptoms to improve during these horrid winter months especially during the early days of the disease, so just keep as warm and snug as you can and I'm sure that once Spring appears (and those little shoots are already through in my garden!) then you and everyone else will start to feel better. :rose:

    MrsO

  • Posted

    Hi Fiftiesgirl,

    I am also sorry to hear that you are having a bad patch :cry: ...we all get them ....but thankfully, not at the same time :wink: , so there is always someone available to offer support.

    Hope you see some improvement soon :love:

    Best wishes, Pauline.

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