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.
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!
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.
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.
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.
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!
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.
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?
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!
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!".
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   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
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.
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🌸
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.
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.
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
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.
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.