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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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  • constance.de
    constance.de margaret22251

    Posted

    I envy you Seahouses, although I don't know it.  I am longing to go to the seaside (I was born on the coast in Northumberland) but I haven't had the strength to travel for two years now (have had PMR for 4 years)!!!  The coast is a 5 hour drive from here (Germany).

    Hang in there!  I hope you are one of the lucky ones and this obnoxious illness isn't severe, and doesn't last long.  Keep posting!  You really need support through all this.  We are always willing to "talk", to listen, and the experts are a God send!

    Kindest regards from Constance.

    • margaret22251
      margaret22251 constance.de

      Posted

      many thanks constance, yes we love seahouses its such a beautifull area we have been coming twice a year for the las 15 years, today the sun is shinning, but we had a bad frost last night the grass is white over, we are going to Rothbury today, i am sure you will know it, driving across the moors is lovely.

      we are in a caravan and last year we got up to all the pipes frozen!.

      thank you for your support, i only started with this pmr in january so i am still new to it and dont always know what to expect.

      Hope you have a good day.

      Regards Margaret

  • Gymjen
    Gymjen margaret22251

    Posted

    Hi Margaret. Have exactly same problem with my husband. I've been on pred for exactly one year this week. Still my husband does not accept I have an illness,he says I am exagerting when I called it a disease.some times I think it is because friends and family ask how I am and do not ask him.he has good health.

    cant tell you what to do other than get him to read the posts on this site that others have entered and he will realise how bad PMR is.did try this with my husband but he said ,he was too busy ,he is retired.just talk to friends and talk to us here.we can't be the only ones with husbands who don't understand.sterssing out will make you worse.

    • margaret22251
      margaret22251 Gymjen

      Posted

      Hi Gymjen, yes i think it is older men that dont understand or dont want to my hubby is 70 bless him, i know he is worries as he has problems with his eyes, and he says i dont complain stop your moaning!, i dont think he would read this forum if i asked him to.

      and i am trying to relax more, christine has recommended a book for me to read which i am going to try, i will do anything to try and understand this illness.

       

  • MrsO-UK_Surrey
    MrsO-UK_Surrey margaret22251

    Posted

    Margaret, I do so sympathise with you and others who are going through this condition with hubbies who don't (or don't WANT to) understand.  Also, I believe some partners just don't like the feeling of their cosy little world being turned a little on its side, whilst others feel threatened by the thought of losing some control over their lives.  Not a day went by, especially during my first undiagnosed year, with several months spent upstairs in bed throughout, when I didn't count my blessings for having my hubby.  

    On the first page of this forum you will find a link to the North East PMRGCA support group who have produced a DVD ('You are not alone') which is especially helpful to new sufferers, and if they can get their families to watch it with them it can help them to unerstand what we go through.

    Continue enjoying Seahouses, whilst at the same time sticking to your guns and not overdoing those walks - turn a deaf ear if possible!wink  

     

    • MrsO-UK_Surrey
      MrsO-UK_Surrey

      Posted

      Sorry, haven't got a clue why that emoticon appeared in the middle of my post when it should have been a closed bracket!
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      If you follow this link it takes you to the post MrsO mentions:

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

      Northeast PMRGCA is the first link.

      I read a publication this week about a study done in Yorkshire asking patients about their experiences with PMR and how they felt, symptoms and how it affected their lives. It is briliant - I could even hear the Yorkshire accents in the quotes from patients! I just hope enough doctors read it to learn how much disability PMR causes.

    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      "their cosy little world"!!!!  How CAN they be so unfealing?  What about the world of their spouses?
  • marykay62062
    marykay62062 margaret22251

    Posted

    I wonder how many marriages survive this PMR? My hubby is retired and I have had PMR for about 1-1/2 years and I find as time passes he is getting grummpy and really short tempered. I find it is best if I just curl up into a little shell which probably isn't the best solution. Any suggestions?
    • constance.de
      constance.de marykay62062

      Posted

      I suppose your husband wanted a relaxed, pain free, illness free, retirement.  Not usually the way it works.  How would he react if the shoe was on the other foot?  Would he be able to cope - no moans, no groans!!!

      If you do curl up into a shell, make sure it is a comfortable one - no interuptions from a grumpy partner.  Better still, go out, have a coffee in a pleasant cafe, meet someone who will understand.

      Keep posting.  At least we all understand and sympathise.  Good luck!

    • EileenH
      EileenH marykay62062

      Posted

      It isn't just PMR of course - it applies to any chronic illness, and not just one partner but also if it is a child. Loads of marriages break down very quickly when one partner has to spend a lot of time on health matters - whether it is their own or someone elses's. 

      Constance is quite right  and in that sense I was fairly lucky (if that is the right word to use) in that mine had had serious health problems a long time ago, he'd just forgotten a bit! However - is it just your PMR or is it actually him getting older and not entirely happy in retirement after all? What I'm going to say may not apply at all to you and if so just ignore it and think "daft bat!". wink

      A lot of people envisage retirement as a glorious golden time - but the reality is rarely quite that. Many men turn into old curmudgeons within months of retirement, other take longer to realise the loss of the identity they had when working or to become bored with not having a routine and things to do. 

      By definition, when you are retired you are in your later years - and I know I think a lot more of the "what if?" thoughts than I did before. PMR didn't do it, I was only in my 50s and I hurt and there were things that were difficult or impossible. It was after being really rather poorly with somehting else that this started and I am very aware of a loss of confidence - but thinking about it, it is something other than the PMR, it didn't stop me before and it is far better now so it shouldn't be that. But there is definitely a sense of I've had the vast majority of my time already - what's left is going to be a lot less.

      Does your husband still have his friends and see them regularly? Or has he focussed his retirement on you and spending time with you? I sit in one room at the computer, OH sits in another at his. If we watch TV we rarely watch the same things - I'm the sports person, he has a passion for disaster movies (OMG, how depressing can you want to be???). We do go on holidays together, in our campervan, but that isn't always easy, I want to do things he doesn't and vice versa, PMR hasn't changed that a lot. Neither of us wants to do much in the way of energetic activities so PMR didn't limit that - just my skiing a bit. But my husband never was a party animal (positively autistic spectrum in a lot of ways which accounts for his lack of empthy rolleyes ) and is still totally centred on his research which he still dabbles in with someone in Innsbruck. I'm worried though as he is saying he's only going to do another year and a bit, until he gets his UK pension. We do jointly do the editing for the Proceedings of a scientific meeting and that occupies us from July to Christmas! Since it is rewarded by a paid trip I hope that will continue - China this year, Chicago next. 

      Maybe your husband is unsure of how to approach doing something on his own, feeling you might be hurt if it is something you can't join in. Or is he thinking of his own mortality? Or is he worried about something to do with his own health? Because believe me - men don't acknowledge that very well either and will run away from it while we head off to our doctor's appointments and cope with the ramifications just like we did with the kids.

      Like Constance - I'd say go out and do your own thing. And ask him what it is that's making him like a bear with a sore head. He might not even realise he is being grumpy lol

    • constance.de
      constance.de EileenH

      Posted

      2 things.  1 st.  I wonder where I got my husband from - he seems to belong to another world.  He is such a happy person, never in the dumps, always there for me - and others.  He will be 80 this year so has been retired 15 years.  He would have retired earlier but we couldn't afford it then.

      2nd.  I looked on the NE forum and saw your new photo.  I just can't believe the difference.  The old photo was a little old grandmother and the new one is of a confident, get up and go, woman.  I didn't change much with pred.  I only put on 4 kgs, except for a puffier face, I stayed the same.  Same size clothes, same hair (but thinner), same me.  Congratulations.  You look 15 years younger.

    • EileenH
      EileenH constance.de

      Posted

      Thank you! Only 15 years? ;-)   I've detested that old photo for a long time but I'm hopeless with a camera and someone from the NE group had taken that one when we were out for lunch in Whitby. I have a new computer and, having tried to use a much nicer photo done with my granddaughter's phone and failed to get it to 6KB we used the computer camera and the kids showed me how to put it up on the forum. 

      It's the hair that makes the difference I think - it is back to being long and smooth instead of short and frizzy. I think my hair bothered me more than the excess weight - thought that was horrendous too.

    • margaret22251
      margaret22251 marykay62062

      Posted

      i sometimes try and not listen i have told my doctor as one day i just cried i think she thought i was mad, but felt better, and the nurse who took my bloods said men are so unfeeling at tomes, stiff uper lip and all that
    • margaret22251
      margaret22251 EileenH

      Posted

      Eileen i can relate to everything you have said, it took John 6 months to come to terms with retirement, as he left all his work mates and does not have now, as his good friend sadly died, he plays the guitar and goes to have a little play with his friend every two weeks.

      He likes to have a drink, so off we trot to the pub, but i go to my crafting class mondays, could go wednesday but dont as i feel guilty as he is on his own, dont know why, as when we were first married he did what he wanted.

      Dont get me wrong i am happy, but its times like now that i have thought how selfish men can be.rolleyeswink

    • constance.de
      constance.de EileenH

      Posted

      I have often tried to put a photo on the NE site, but it has never worked.  Obviously they are not 6KB (whatever that means!!) I like to "see" the people I speak/write to, so it isn't fair they can't see me  - I'm not THAT bad looking!!! (Ughm!)
    • EileenH
      EileenH constance.de

      Posted

      It's the size of the file you are trying to upload. I know about that sort of thing but the kids were rather better at doing the actual job. Find a 10 year old...
    • EileenH
      EileenH

      Posted

      That's just for the avatar photo, other photos are probably different (but don't ask me about that!)
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Hi Eileen,

      where can I find your photos?  I'd love to see some of the faces of the wonderful women we have come to rely on to help us through this damn disorder or whatever you prefer to call it.

      You to Mrs. O😊

      Big hugs to you all💕

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

      Posted

      Hi Mrs. Mac

      Follow Eileen's suggestion........along with a few others you are familiar with, we'll both be there to welcome you....except I'm under another name just to keep you guessing! winksmile  

      Big hugs to you tooxx

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