Now I know how one feels when relatives et ,al fail to understand
how bloody you feel, it is very upsetting to say the least !! and of no help whatsoever . Joan T...
I know what you mean, only my daughter who lives with me and a close friend understand how it feels and how it impacts, relatives who I see maybe weekly don't get it.
It feels like they are uninterested or don't want to empathise but I think it may be because it is different, almost daily, it is hard for them to understand, I usually see relatives when feeling \"ok-ish\" so they see a nearly normal me, they are unaware that that morning it may have taken 10 minutes to get up the stairs or that I feel detatched and generally weird. Some people have thought I am drunk when that isn't the case.
Completely agree my sons make me feel like a hypercondriac (probably spelt wrong). Only my husband is supportive and even he does not fully understand. I sometimes even doubt myself and think am I making a fuss I still work look after my mum, grandchildred etc. As the family cannot see anything wrong then I must be allright. Most of the time I cope but some days....
Good to have a place to let off steam
I was talking to a friend on the 'phone the other day who mentioned that his friend had suffered from Polymyalgia - \"he had a painful neck but was all better now\"..........I wish!!!!!
Dear All
There is no need to suffer from lack of empathy. There is a DVD made specifically for new patients, family, friends relatives and carers.
It was made because five of us found ourselves in the same situation and, I in particular, could have cheerfully rung relatives and friends necks.
My you are putting on weight its about time you dieted or exercised more.
That is why we made the DVD. Go to www.pmr-gca-northeast.co.uk and have a look at the site. Info can be printed off for relatives, you can drag family to the computer.
Its not there faults, you look well. grrrrrrrrrrrrrr
Hi all,
I totally agree with the previous comments...the problem is that others cannot guage how totally exhausted you can get after minimal effort :cry: . I love my mother dearly, but any time I tell her that I am stiff and sore, her response is that she is too (she is 80 & arthritic, I am 51 & used to be very fit and active), and maybe it is the weather affecting both of us....so now I just smile and say \"oh I'm not too bad today\".However, my rheumatologist surprised me greatly yesterday by saying that he could understand how frustrated I was by my slow progress, and was also honest enough to admit that he thought it was extremely unlikely that I would be steroid free in less than two years-not the news i wanted but at least I know what to expect!! I sometimes feel like snapping at friends too when they say \"you are looking really well\". What you really want to say is \"well come round to my house at 3am when I'm awake because of the steroids and can't get comfortable enough to sleep as my neck & arms hurt, Oh and by the way would anyone like my medical bills for the last 4 months....no takers then????
Of course we don't do that, just smile sweetly and thank them for the complement, then go home and take off all the make-up that it took to make you look \"well\" in the first place :lol: Sorry....rant over...for now!! Best wishes to all, Pauline
Hi everybody, Haven't posted much lately but I just had to join in this one! Mostly because I was expecting carpet cleaners to come this afternoon and have spent the last two days moving out all the bits and pieces and small pieces of furniture that I didn't think they would do. Anyway just had a phone call to say that there had been a chemical spill in the van and can they come Sat. or Mon. NO, No, No!!!!
But husband has a shoulder problem and is very unhappy at the moment with a very itchy allergic rash and unless I really moan and moan and moan which isn't in my nature it doesn't occur to him to help.
I know I should ask more but one gets so tired of people expecting PMR to get better in a few months, and the endless \"You're looking very well!\" Also, of course, I want to do things........
Anyway dirty carpets never did anyone any harm, also we have a cat with Velcro fur who brings in half the garden so it probably wouldn't have looked great anyway. What a relief to know this site has people who will understand!
I hope I'm feeling well enough tomorrow to go out with a girl friend to Winchester, on the bus and treat myself to something nice!
Is there a way to moan POSITIVELY? Green granny
I am one of the lucky ones in that my husband is great and never puts any oressure on me at all It really helos that he is fit !!
Everyone tells me how well I look and to be fair to them I do Friends are supportive as well I think because I did so many things before riding ,gym , aerobics ,Riding for the disabled looked after a few other people also They realise something must be wrong with me
I think it is the lack of energy (includng emotional energy ) that I find wearing Anything stressful really knocks me back wheras I was the one who everyone would turn to if they had a problem to help I cant cope anymore There are one or two peoople I avoid now ( those who always have a problem !!)
I am lucky in the fact I dont work and have time for myself to rest if needed My biggest problem was January when I had to treble my steroids ( up to 15mg ) and mentally coming to terms with the fact that this bout was going to last a lot longer than 2 years !!!!!!!!!!!
Now down to 6mg Feeling OK so far
This site is great for all sorts of things Advise letting of steam and support Thank goodness !!
Best wishes
Mrs G
Hi fellow sufferers,
I have mentioned before on this site that I sent off for the DVD on PMR, Up until last night I had not watched it all the way through now I have and it well worth the £5. 8)
I wonder if the television program \"embarrassing bodies\" has ever mentioned PMR, that would help other people to understand how we feel.
Spammy
Mrs G
What you have said is spot on. I have just been through avery stressful time at home and at work, guess what had a relapse and have had to double my dose from 3.5 to 7mg. Not sure is even this is going to be enough. Really really gutted, the most annoying thing is that I am usually mrs capable solves everything and helps everyone. I find that I cannot do what I used not only physically but emotionally and the hardest thing for me to do is say no. I honestly think that I will not get better until I can slow down and be kinder to myself. Really really hard.
Linda
What a splendid thread! A medal to JoanT for starting it and all who have chipped in.
I think I shall make copies to hand out to all who tell me how well I look ( only because my normally bony face has the beginnings of chipmunk cheeks. ) Like someone else ( sorry cannot remember who at the moment ) I'd be glad to have my wrinkles back. And I shall make an enlarged copy to put on the kitchen wall with \" You Are Not Alone\" as the title with acknowledgements to the video makers.
I think it is noteworthy how many posters are people who, until PMR/GCA struck, were copers, helpers, dealers with whatever was thrown at them. It isn't just the physical suffering that gets to you, is it? It's the horrible feeling that you might be turning into a different character that is so frightening.
I still hear my headmistress saying \" self- control girls is the most important lesson you can learn \". I thought I had but sometimes I feel I've lost it and feel ashamed.
But yesterday I helped change two heavy tables from room to room and did not have any ill-effects so feel rather chuffed.
Best wishes to all BettyE
Hello Linda
Sorry to hear you too have had to increase your steroids probably caused by stress
This took me by surprise really and it took a little while to realise that it was stress causing me problems I expected aches and pains weight gain sleep problems etc but this wasnt something I expected
I think ( I might be wrong Eileen might put me right !!!!) that it is possibly something to do with the Adrenal glands shutting down while you are on steroids and not kicking back in They are the things that kick into action to help you cope with problems
I have stepped back from always being available to help certain people who always turn to you I just say no Im not feeling well enough to cope with anything at the moment I have given up helping with Riding for the Disabled at present as though pyhsically it can be quite demanding mentally it can be more so when you are dealing with children who have learning disabilities who can be very unprdicteble and a live animal !!!! I was always very very tired and drained afterwards
I am being a bit me me me at present but after my blip I want to get back to even 5mg !!
I hope you dont have to increase anymore but when I went up to 10mg my Dr said I feel you may have to go up to 15mg to zap this flare up
and she was right
Best wishes
Mrts G
Spammy and BettyE
It was so so nice to hear that someone felt the DVD was useful and that BettyE was putting the title on the Fridge.
It was a shot in the dark for us and although quite a few people have ordered it only some have let us know that they wished they had been given it at the start.
Members of our Support Group do get the DVD free, but we just do not have the money not to charge for posting and packing. One day, perhaps when we win the pool, oh dear that shows my age it should be lottery, we will be able to offer it free to all. Without AWA and GMBC we would not have been able to make it at all.
We hope to be able to update it when something new comes along, like more friendlier medication. We dream on.
:D Sorry Betty I messed that up What I thought I was saying was
thank you for the medal I will put it in the drawer with my G.S.M MALAY 1954-56.You cheered me up immensly..hope I get this right this time its too early for me .. all the best Joan T..
Hi all!
I, too, think this has been a super thread! Trouble is, the people who need to read it won't have.
We've just spent the last 2 weeks in GB as we've had to clear out the house to let - a perfectly healthy 30 year old couldn't manage to put the empty bottles of cleaning products in the bin and put the bin where it belonged for weekly emptying. At least the house was clean. The process wasn't helped by the local tip (sorry, recycling centre :lol: ) was closed for 4 weeks - starting Saturday, so instead of 100yds it was 6 miles to the next one. I'd suggested to my husband we came over for 3 or 4 weeks, did it all gently, no rushing from one house to the next. Spend a few days driving to Calais and back - enjoy it. Yeah, right!
Just before we came over we'd had 4 weeks of 30C+ temps which obviously caused the flare I've got at present so GB was quite pleasant from that point of view. Just the rest was the icing on the cake. By last Tuesday divorce looked a very acceptable option! I'd even managed to forget his birthday on Sunday morning when I was woken suddenly from deep sleep by him deciding it was time to get up :oops: . He just doesn't get the concept of \"I can't...\" or \"I'm tired\". He's shown almost no interest in how I am since diagnosis - I'm on tablets, I'm cured. And this is a former healthcare professional we're talking about. You should have seen his face last week when the manageress at my optician in Scotland was pouring her heart out when she discovered we both have PMR - oh, other people have similar problems! One daughter is a nurse - \"you must get off the steroids, they do such awful things...\" (she works on a chest ward, the patients are a mess and take lots of steroids). No-one can understand the mincemeat brain side at all - husband: \"but you're a woman, you're supposed to be able to multi-task...\"
It was actually much easier before he retired - I had far more options to pace myself than I do now when he decides to do something at five minutes notice! Roll on the winter - I can disappear up the mountain for some peace and quiet!
On a positive note, however, has anyone tried the new Dyson vacuum? There is an ultra-light upright on a ball for all types of floors - it is much easier to manoeuvre than traditional types as well as being very quiet. My daughter had just got one and now I have one (for my birthday pressy :roll: ). Brill - if you have to do cleaning! No need to fiddle with attachments for doing hard floors but there is a turbo brush attachment available for doing the stair carpet.
And another interesting fact I heard on a German weather programme which has won all sorts of awards for its format and messages: older people can get heat exhaustion at temperatures as low as 23/24C if the humidity is high. Which could account for all sorts of things in PMR for those who are living in the south where you tend to get those sort of temperatures with humid conditions. It rarely gets that warm in the north, just humid (or is that rain?)!!
Thanks for my turn to moan :lol: Now I just need the rain to go away and some sun to come back,
EileenH
Hi Eileen, When I posted on the 11th about empathy it was a doctor who
set me off ,I blew my top and his wife was a nurse they are family with the same attitude, thank goodness for this forum ..Joan T
Hi Eileen
I just had to write and say \"snap\" with also experiencing the \"but you're a woman, you're supposed to be able to multi-task\". Whilst up some steps cleaning windows last week, I was trying to get a mark off the UPVC frame and suddenly heard this voice behind saying \"don't rub so hard\" - good job I only had a cloth in my hand as anything heavier would have seen me locked up! :x Think I'll come up that mountain with you!
Hate the weight and noise of our Dyson and will definitely look up the new one - haven't got a birthday coming up (happy birthday to you by the way, whenever it was) so I'll probably get it for my Christmas pressie :roll:
Fingers crossed for you that the flare quickly takes a hike!
MrsO
Hi MrsO!
Thanks for the birthday wishes - I shared my b'day with the Queen Mum so I used to have \"my tune\" played!!!
Comet are currently doing a \"25% off your new Dyson when you bring in your old vacuum\" so my daughter gave me her useless (cut out after 5 min) Electrolux to take along! That was my b'day pressy from her! :lol: Her old Dyson had died and the husband said \"Dyson can't be THAT good, get a cheaper one\". That was in the early spring - and she couldn't find the receipt to take it back 2 months later when it didn't behave. The bloke at Comet laughed when I told him the story - especially at the Electrolux bit. The slender Dyson doesn't have anything like the motor but does the job and you can have a conversation while it's running. Good un-birthday pressy :lol:
What is it that makes men think we haven't tried out all the variations of doing something and adopted the one that works best for us? Himself keeps asking \"why...\" ever since he retired from the NHS. Never offers to do the jobs I really hate (like cooking dinner) but is worse with the W question than either of the girls were!! And while we're on the subject - cleaning windows etc is a real no-no with PMR. Time for a window cleaner. I go with the grubby windows, once a year at the most. But we live on the second floor so the only downside is the loss of view.
And JoanT - I have spent much time with doctors and nurses through my life! There are some nice ones but there are far too many who think they are something special. Like the Queen they also have to use the smallest room, just like the rest of us! Hope you got seriously stroppy with them!
EileenH
Eileen - you really made me chuckle with thoughts of the Queen also having to use the smallest room.....bet her's is still bigger than mine though! :lol:
MrsO
To all those suffering with husbands from time to time:-
We went on a pre-retirement course some years back and one woman said \" I married him for richer, for poorer, but NOT FOR LUNCH!\"
Most of you will know just what that means!
OK now have to go and get his breakfast. No not really.
Have a good Sunday, Pam