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trying to stay calm

Posted , 9 users are following.

margaret22251
margaret22251

well i was up at 5.30 this morning, and told myself to try and stay calm.

I know i panic and feel stupid, but i am still learning from you all, i suspect so is my doctor.

it is a beautifull morning here in seahouses, yesterday i did more than i should have walking, did not want to spoil my hubbys holiday, but today i will tell him what i can do and what i cant. 

His reaction when i told him i thought i had done too much was we are not going to go on any more holidays. of course that did not help me, but i think it is hard for him to understand that one day i seem ok and the next all hell is let loose.

Hope you all have a lovely day take care,

3 likes, 44 replies

44 Replies

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  • Mrs.Mac-Canada
    Mrs.Mac-Canada margaret22251

    Posted

    Hi Margaret,

    i think most of us women have been the caregivers to our families and tried to make sure they had and did the things that made them happy. This inspite of how we were feeling.  We continue through colds, flus, sore muscles and backs and I guess in a way have taught them that we are capable of keeping going as usual.

    I am so fortunate that my husband, family and even friends went right to the Internet to find out about PMR when I was diagnosed and have been wonderfully supportive. We are recently retired and, like so many here, have had to make some pretty significant changes to our retirement plans.  We do things at a slower pace now and when I'm too tired to go for walks or shopping he goes on his own.  He, and most men I think, don't have the friends that women do which is unfortunate because it would take the pressure off us a bit.  

    I hope your hubby will learn more about what you're going through and be more understanding. If he won't read about PMR himself maybe someone in your family or a friend will and talk about it when he is there.

    As far as no more holidays go, let him stay home and you go with a friend or your family.  I really don't like the guilt thing, we do enough of that on our own.

    Enjoy the rest of your holiday and take good care of yourself🌸

    Hugs,  Diana

    • margaret22251
      margaret22251 Mrs.Mac-Canada

      Posted

      thank you Diana,

      I have told him i am on this forum and he said filling your head with rubbish, dont worry im working on it, as i have come to release it is going to be a long job.

      Also i am not going to feel guilty if my friends ask me out.

      feel better for that!

  • charlie44644
    charlie44644 margaret22251

    Posted

    Hi Margaret,

    Sounds like you had a nice day yesterday. Don't be discouraged by the fatigue. It seems to be part of PMR. There are some days I take a nap after breakfast but most days I wait until after lunch. I am basically pretty active but I sucumb to the fatigue as needed.

    Charlie44644

    • margaret22251
      margaret22251 charlie44644

      Posted

      Hi Charlie, today i have paced myself, but the weather has helped as it is rainging!!!!!, yesterday was the first day i slept in the afternoon for 2 hours, thats not like me, still trying to adjust though.

      I find no two days are alike, and i think thats why i panic.

       

    • EileenH
      EileenH margaret22251

      Posted

      Part of the reason no two days are alike is that very often on a good day you do too much - and suffer for it later. It may not even be the next day, it may the following day.

      You have to identify your limits and be stubborn about sticking to them. Resting BEFORE something you have planned also helps.

      And in my book - holidays are for relaxing and resting, not haring around every day. Luckily, David agrees...

  • Padada
    Padada margaret22251

    Posted

    Does anyone ever 'get 'over' pmr and experience a somewhat normal life again?  I don't see many comments from forum members that hint at that....
    • EileenH
      EileenH Padada

      Posted

      The vast majority of people who have PMR go into remission sooner or later - about a quarter in up to a couple of years, a further half by up to 5 or 6 years. 

      You don't see many comments from forum members who HAVE got over it because most of them don't need the forum any more. Most of the people on the forum are people with problems, no problems and they don't come here.

      MrsO and MrsG have been pred-free for a few years now. I lead a perfectly normal life - although I still have PMR and am on pred. There are some others on the other forums - but most of us are heavily involved with the online support set-up or in running support groups in the UK. Many people get their info and then learn to adapt their lifestyles and hobbies and get on with the rest of life with just a very occasional look at a forum or are involved in other support activities that don't leave a lot of time for a forum.

      On average, at a conservative estimate, I spend 2 or 3 hours a day either on a forum or writing and researching. There are several people I know who not only have PMR or GCA but also go out to work to meet the bills - not all of us are retired. So yes - most people lead a normal life again.

    • Padada
      Padada EileenH

      Posted

      Thank you for the answer to my inquiry; it is encouraging information.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Padada

      Posted

      Padada, yes there are many of us who have reached that light at the end of the tunnel and waved goodbye to either PMR or GCA or both.  It took 6.5 years for me with 5.5 of those being on steroids starting at 40mgs, and PMR/GCA went into remission coming up for 3 years ago now.  So life is more or less normal once again although I can't manage such long walks as I used to, but then I am that much older!  I thoroughly recommend both Tai Chi and Nordic pole walking.....and staying positive!  
    • RD_Swede
      RD_Swede MrsO-UK_Surrey

      Posted

      MrsO and Eileen have mentioned some who have come to 0 Pred. I am another one and I have been free from Pred since December 2008. I had pmr as well as GCA but didn´t have pain as bad as most of you seem to have. Anyway, I found out a way to reduce slowly and it suited me. After that others, especially Eileen have improved the method to make it even slower as the reduction period needed is individual.

      When I was more active, there were not so many positive things to help, but by being a member of this forum and the NE Forum as well as an American and one Canadian, I could get some advice. After my pmr was in remission, I still wanted to come with inputs whenever I thought I had something to tell. However, much has changed and I don´t feel I have so much to contribute with now except telling every once in a while that I am still off

      on the ne forum, i started a club zero in order to tell everybody that there is an end to pmr and that you can have a good life after that. i think it was appreciated by most persons on that forum and several others have joined the club zero and there is also a possibility to come up with questions and comments on another thread as one thread is only for club zero members in order to make it easier to find just those postings.

      there is a light at the end of the tunnel, and thanks to persons like eileen and mrso and others, there is a wealth of information on this forum as well as the ne forum

      see you at the end of the tunnel!

      ragnar and="" that="" i="" don´t="" have="" any="" pmr="" problems.="" i="" also="" think="" it="" is="" important="" to="" think="" the="" way="" somebody="" has="" said="" -="" after="" getting="" off="" pmr="" you="" are="" a="" couple="" of="" years="" older,="" so="" it="" is="" not="" possible="" to="" compare="" with="" the="" way="" you="" were="" before="" pmr.="" on="" the="" ne="" forum,="" i="" started="" a="" club="" zero="" in="" order="" to="" tell="" everybody="" that="" there="" is="" an="" end="" to="" pmr="" and="" that="" you="" can="" have="" a="" good="" life="" after="" that.="" i="" think="" it="" was="" appreciated="" by="" most="" persons="" on="" that="" forum="" and="" several="" others="" have="" joined="" the="" club="" zero="" and="" there="" is="" also="" a="" possibility="" to="" come="" up="" with="" questions="" and="" comments="" on="" another="" thread="" as="" one="" thread="" is="" only="" for="" club="" zero="" members="" in="" order="" to="" make="" it="" easier="" to="" find="" just="" those="" postings.="" there="" is="" a="" light="" at="" the="" end="" of="" the="" tunnel,="" and="" thanks="" to="" persons="" like="" eileen="" and="" mrso="" and="" others,="" there="" is="" a="" wealth="" of="" information="" on="" this="" forum="" as="" well="" as="" the="" ne="" forum="" see="" you="" at="" the="" end="" of="" the="" tunnel!="">

      on the ne forum, i started a club zero in order to tell everybody that there is an end to pmr and that you can have a good life after that. i think it was appreciated by most persons on that forum and several others have joined the club zero and there is also a possibility to come up with questions and comments on another thread as one thread is only for club zero members in order to make it easier to find just those postings.

      there is a light at the end of the tunnel, and thanks to persons like eileen and mrso and others, there is a wealth of information on this forum as well as the ne forum

      see you at the end of the tunnel!

      ragnar>

    • constance.de
      constance.de RD_Swede

      Posted

      Please keep encouraging us.  It is much appreciated.  Constance
    • MrsO-UK_Surrey
      MrsO-UK_Surrey RD_Swede

      Posted

      Hi Ragnar, your idea for a Club Zero on the NE forum was an excellent one - great for those still struggling to know that there is definitely an end in sight.  Members of the support group I run still come to the meetings even when they have recovered simply because theywant to show others that there is a life after steroids!

      Still realise how lucky I was to see that reducing regime of your's all those years ago now.  Keep well, Ragnar.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada RD_Swede

      Posted

      Ragnar, thank you for posting. It is a positive message for all of us that, like Mrs. O and others,  PMR will eventually run it's course.

      You mentioned a Canadian forum. I have looked and can't seem to find it. If you have any information at all on it could you please post.

      Thanks again and be well🌸

      Diana

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      We don't think it still exists - unless Ragnar knows better!

      Someone else who was a regular on here as the only place at the time to find info about GCA also participated in it but told me some time ago she thought it had disappeared. The US one I was on for ages also went pear-shaped and several of the members came here.

      But the lady I mentioned met others here and they all got together to form the UK charities, the northeast one first and later the national one. There's lots to thank them for.

    • margaret22251
      margaret22251 EileenH

      Posted

      Eileen sorry to be a pain, but how did you reduce, and is my doctor reducing me too much, or am i just expericing the normal aches and pains etc.

      Many thanks Margaret

    • EileenH
      EileenH margaret22251

      Posted

      Follow this link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      The first post in the thread has loads of links. Post 4 and 5 have my "Dead slow and nearly stop" reduction plan with explanation.

      If you try a big reduction overnight so to speak your body may protest at the new lower dose - if the pain starts straight away after the reduction and then improves over a couple of weeks it is most likely to be that. If it doesn't start for some time and then gets worse it it is a sign the dose is possibly too low and you are having a flare. But it is all explained there.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Thanks for checking.

      I sounds like your meetings are fun and informative.  Maybe when I get home I'll ask my GP and Rhuemy to give my email to their other PMR patients and see if they want to do a group thingy in our area.  My GP said she has only one other patient with PMR.  I didn't check about GCA. Not sure about Rhuemy.

      By the way, I asked my Rhuemy about GCA and he said it was the same as temporal arteritis (sp?😛) and didn't affect the rest if your body.  I thought it did but just let it go.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mrs.Mac-Canada

      Posted

      You thought right, Diana!  GCA can affect arteries throughout the body.  Temporal arteritis means that just the temporal arteries are involved.
    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Oh dear. One day the gospel will spread!

      GCA is commonly referred to as temporal arteritis - but temporal arteritis affects arteries in your head and if it is there the chances are it is heading for the arteries that supply the optic nerve. If they block the optic nerve is starved of its oxygen supply and something similar to a stroke happens.

      However, GCA can affect ANY artery that has an elastic layer to its wall: the aorta, other arteries in the chest, the brachial artery which supplies the arms, arteries in the abdomen as well. GCA is specifically caused by the development of giant cells (hence the name). Temporal arteritis can actually be caused by other forms of inflammation as well as GCA. GCA is a large vessel vasculitis (LVV, inflammation of large vessels), LVV doesn't have to be GCA.

      Sometimes I wonder...

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Thanks for clarifying Mrs. O and Eileen.  Knew you two would know🌸🌸 (these little flowers are the closest thing to a pansy on my ipad😋)
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