Never a days illness, now this!!

Hello Margaretanne and Jim

Eileen has tried to boost you already and I just want to say that you must try and stay positive through this as the worry and stress will only aggravate both your condition and Jim's.

I know there are some people in very difficult circumstances through the economic situation at the moment - my friend's son has lost his shoe business through the recession, has applied for 82 jobs from which he has received 3 interviews and is now working on a commission-only basis. Like everyone else he has a mortgage but also two children one of whom is autistic. It is just so sad.

Do get in touch with Social Services and, as Eileen says, your GP and tell them your predicament so that at least some help is forthcoming which will go a long way to alleviating your worries.

I know it is very difficult to pick yourself up when you feel so down but many of us on here have had some very bad and depressing times at the start of our illnesses, so KNOW that it will get better. Just give yourselves time and perhaps a little treat, something you both enjoy doing like meeting up with friends for a cup of tea and a chat. We're all here for you both and let us know what your GP says.

MrsO

Hello MargaretAnn and Jim,

I can only really reiterate what Eileen and MrsO have said. I know when I first had PMR I felt as though my whole world had fallen apart, but as I started to feel better (and it will happen to Jim) I became more positive. There's an awful lot of help out there both medical, emotional and financial so I would agree with Eileen. First stop GP - push him/her for every bit of help available. Jim's worked hard all his life and its pay-back time now. Health always comes first so try to concentrate on that. But I know financial worries can affect your health so try to find out everything you're entitled to. The Citizen's Advice website is very helpful or you can make an appointment to see them in person. They're a mine of information. As MrsO says Social Services are another must. I also like MrsO's suggestion of a little treat for yourselves - make the effort to do something you both enjoy, it really helps. Its tough feeling ill, its even tougher when there are financial implications so if you can those settled in your mind then that will help enormously. You'll get so much support on this site - practical advice, personal experiences or just to have a really good moan (I did that a few weeks ago and it was so cathartic). I hope you have a good weekend and will feel a lot more positive soon.

Kind Regards

Lizzie Ellen

Hallo Margaretann, I read your post first thing but was so indignant I did not dare reply then.

Mrs. O and Eileen have already given very good advice as they have to so many of us.

I'll add my thoughts in case they may help.

I used to be a teacher and held several different posts in a long career. As I was employed by Local Authorities I always had a copy of Conditions of service and Sick Pay Regulations. I know things are very different now and always have been in Scotland ( though I had always felt your ways wrere better ) Does your husband have anything like this? If so do take time to read the small print. I fear, though, that his work may have been farmed out to the lowest bidder who do not often put employees welfare very high on their list of priorities.

Does he belong to a union? If so contact his local Rep.

Ring your local Citizens' Advice Bureau; the folks who man their offices are of the best and will be on your side.

I do hope your GP will be a bit more help when you go back Like the rest of us, they are only people and must sometimes get very fed up when they are plagued by malingerers and hypochondriacs but it should be obvious to your Doctor that your husband does not come into either category. Also, if he's never met a case of PMR before, he has now and as a Professional should have informed himself by this time.

Have you contacted the Insurance Company and your mortgagers? ( is that right? ) Don't leave things to build up is always the advice given.

Keep coming back here but try not to do it at 2.30AM!! unless it helps you to get back to sleep, that is.

Best wishes to you both. BettyE

Margaretann

You are right next door to the Support Group for Scotland.

www.pmr-gca.org.uk/Tayside Support Group and you will find a telephone number for the Organiser Mrs Jean Miller.

There is no need to struggle along - go see them.

Come back here and let us know how you get on.

Hi margaret Ann

Sorry to hear you are feeling so low As the others have said your Dr should be the first port of call There was a lady on here who offered to help with benefit advice but cant remember her name ??

If you have other health problems this might just seem one too many but with PMR if the steroids work for Jim he may well be able to continue working only time will tell

One friend who is 63 was made redundant last year he has very bad eyesight due to diabetes ( lots of eye ops ) and no feeling in his feet He has worked all his life and is now on pension credit and lots of other benefits have appeared council tax help with the mortgage One place to go is always the Citizens Advice Bureau they have lots of information of where to get help

There are lots of benefits and lots of help out there ( a lot of it charity based ) but it is a matter of finding the right place to go

I hope you are both feeling a bit better now

Best wishes Mrs G

Hallo Margaretann

I do hope you are feeling a bit better this morning.

The lady who offered help with Benefits is Froggygran and her post is about half way down the list under Benefits. As you will see, she used to work in the Benefilts Office so should be able to give you god advice. BettyE

Hi everone im late again cant sleep my athritis keeps me awake i suffer from chronic pain, i have a lot off nerve damage and it seems to get worse at nights, so sorry im writing this post at this late hour. Anyway this is not about my illnesses, this is about my husband who thinks thats its now healed, because his pain is for the moment with the steriod tablets his pain is under control and he thinks that its gone for good, oh god i hope it doesnt get too bad for him, he wont be able to cope,but i am here for him every step off the way. Jim doesnt go back to his gp until 21st june it seems miles away. but i am hopeing that his gp will diagnose this illness so that jim could at least accept it, thank you for all your help you have made this easier for me and i will try and make inquires about what benifits he is allowed as he says hes too tired and cant face going back to work, So his health comes first we just have to work out the money shortages im sure there is worse than jim will let you know what his gp says on the 21st bye for now MARGARETANN

Hi Margaretann!

OK, we'll let you off being up in the middle of the night playing on the computer - you have a good reason! And it's so good to hear that Jim is feeling so much better even if he is still very tired. That may also improve over the next few weeks, so don't give up altogether yet - and you're quite right, there are a lot of worse things and things will probably work out.

I still think you should try to go back to the GP before next Monday - Jim's reaction to the steroids is pretty much diagnostic for PMR and having the proper diagnosis would mean you can present his employers with a real \"This is the situation and what are you going to do\" rather than on the basis of just the shoulder pain they think it is at present.

And, please, do try to explain to Jim that IT IS NOT CURED! I know he's a man and almost certainly in denial :wink: but the steroids only control the symptoms and he must keep on them to stay feeling reasonably well. It's like your arthritis - can't be cured, can only be managed. That said - he should have much less pain than you do which is a plus.

The only parallel I can think of is the diabetes you often get as you get older. It can be dealt with to a great extent by losing weight and keeping to a good diet but the problem doesn't really go away - but neither does it stop you carrying on with a normal life. PMR is much the same so don't be frightened of it, just learn to live with it.

Anyway - all the best, and do keep in touch with how you get on,

EileenH

Hello again Margaretanne and please don't apologise for writing in the wee small hours. Hopefully most of us are slumbering away at that time but I know there are others amongst us who are not so lucky and at times they, too, find the computer a comforting companion!

As Eileen has already said, Jim is not cured but if he thinks he is because his pain has gone then at least he is able to think positively which is a good frame of mind to be in.

Although the steroids are not curing the PMR but just controlling the inflammation and thereby easing the pain, it IS possible for the PMR to burn itself out eventually.

There are some people who gradually reduce the steroids and make a textbook recovery in a year whilst in other cases it can take 2-3 years and occasionally a bit longer.

The main thing is, as Jim has found, the steroids reduce the pain and after the initial few weeks enable us to lead more or less normal lives albeit that we must pace ourselves and not overdo it if we wish to remain on an even keel.

Importantly, it is great that Jim is in less pain and must therefore be feeling happier - it is only a week to his next appointment and by that time the GP will probably be able to confirm the diagnosis of PMR and will suggest a slow reduction programme for the future.

Meanwhile, as I mentioned previously, try to think positively and it is essential not to stress and worry as to do so will only aggravate the PMR symptoms and heighten your own pain levels as well.

A little tip: little walks in the fresh air for as far as your pain allows will really help you both physically and emotionally.

Very best wishes.

MrsO

Hi everone its Margaretann again thanks for all your help and a special thankyou to EileenH and mrs0 for understanding why i post in the wee small hours plus everone is in there bed and i get no distractions while i post. At the moment jim has mixed emotions :? Iam trying to help him but hes been quite argumental. Meaning hes thinking i am saying that i know it all and just to leave him alone, which i have done, but i cant help feeling that all my help and support that i have gave him, hes nowthrowing it back in my face, i cant do no more than be here for him,but i have my own bad health to cope with and im finding this really difficult [sorry i do prattle on ]you dont want to hear all my moaning so i will close now and get some beauty sleep, perhaps i will feel better tommorow and just be there for him.as i always have been. he wont go to see his gp any earlier than his next appt, so just have to be patient. bye for now and once again thanks for all your help and support god bless MARGARETANN

Hello Margaret Ann

Sorry to hear you are still feeling so down Jim has to adjust to this in his own way If he hasnt had any previous illness it can be difficult to accept

My husband is quite good about his health as his mother who was one of these slim active people who rushed everywhere had a stroke at the age of 56 and was in not very good condition until she died 8 years later It was found she had BP of the scale Because of this my husbands brothers and sisters have been reg checked and he takes BP amd cholestral drugs and is fine and very fit ( thank goodness ) !!

I know a lot of men tend to ignore their health ( until something goes wrong !!) but as women we are checked for everything from our teens

My friends husband has very severe RA and I have seen him deteriorate both physically and mentally as he refuses to join any groups or do anything to help himself diet gentle exercise swimming but just totally overdoes it when he can move !! I know underneath he is a lovely guy who would chop of his arm to help you but it is very well hidden now

Patience is the only answer With this and any other illness you have to help yourself and I try and eat well move as much as I can Meet up with friends who have been great at keeping my spirits up spend as much time out of doors as I can Tell my horses all about it ( they dont seem very interested !!) but they are very soothing

I did belong to a health club but have had to give it up because of the PMR but I have reg emails from the Personal Trainer there and one ended with \"\" Health is Wealth \"\" and I think that is so true and has become my mantra

Hope you feel better soon and manage to get more sleep as I am a different person if I sleep well or miss out Blue Nytol 1 a night from Pharmacist helps me out without fail if I have had a few bad nights

Best wishes Mrs G

Hi Margaretann,

It is quite possible that the argumentative Jim is part of the PMR - a few of us posted about \"rattyness\" recently. Somewhere I saw someone say they swore a lot with PMR! Though, given the nature of the beast, it's understandable!

To go along with that, men are really not good at dealing with being ill and are particularly bad when they have never been ill before - though I'm sure you'll have heard about that before. He will also almost certainly feel totally out of control, which is a new feeling for him, and the fact that you now know an awful lot about what he has that he doesn't will make him feel quite resentful. I have similar problems with my husband - he had cancer 16 years ago and our GP in Meigle was hopeless and unhelpful whilst he was in Ninewells having chemo. So I did all the research (no internet then!) about the drugs he was on in between chemos - he couldn't swallow pills at all so I could hardly leave the house because I had to be there to crush the tablets and mix them with honey every 4 hours so he could get them down. I asked for liquids - knowing they existed - and the GP argued with me. Then I just waited for the oncologist to do it! Which didn't improve my relationship with the GP so I changed to another (wonderful) one! However - now he won't take any responsibility for his health, his diet is disgusting, he won't use his hearing aids (deaf due to chemo) so his hearing is getting even worse... And if I say anything I get the same sort of treatment you're probably getting.

I imagine you've been together a while so I bet you know how to get the important things into his awareness :wink: Are you able to get out on our own? There is nothing to stop you going to the GP yourself and telling him about what's happening - whilst the doctor can't discuss Jim's medical history with you this is something which is also affecting you badly and most GPs are well aware of how difficult men can be. You need support too - it's one thing helping deal with PMR when your partner is healthy and you have your own problems into the bargain. Go and tell the doc how YOU are - it will give him some background for when he sees Jim. I know that may be difficult as Jim is at home all day and I bet he's like mine - why are you doing that, where are you going, when are you going to...!!!!!! Mine took early retirement and now works from home (like me) but I get that all the time! Answer - cos this is what I've done for years, any objection? :lol: But he's probably bored too, missing the men at work and all the rest of it. And as a result - scared witless and he's taking it out on you because he's sure you won't let him down. It's like kids turning on their parents when they get to be teens, pushing the limits. He's always been the breadwinner and that elevated position is under threat - remember I lived in Scotland, I know what our generation is like! Hope he's at least interested in the footy - though he probably thinks his mates thinks he's got ill now on purpose!

And don't apologise for having a moan to us - we know where you are coming from and if it helps - moan! We all have a choice here - we don't have to read it or answer it if we don't want to :wink: But someone will because we do care and want to offer at least a \"virtual hug\" - a trouble shared is a trouble halved, and if this forum is anything to go by, it'll be at least a quarter, if not a fifth of what it was!

keep in touch,

EileenH

Oh thank you thank you so much for being so so wonderful people knowing someone cares makes me feel heaps better, you were right when you said we were together a long time . We have been married for 38yrs long time eh and its not been plain sailing but what is ,after that time together, Its ok though when he is being resentful, i know i cant take it personal i will just be t here when he needs me. EileenH your life sounds so good being in another country, i would love to do what you have and it would be italy, i have always wanted to live there. Anyway jim is up and down just now. I think it is not being able to retire as his pension is not what he thought it would be but we will think off something im sure.God i

Dont shut up do i. Anyway thanks to you both MRS.G and EileenH God Bless You Both MARGARETANN

Hi its Margaretann how is everyone, Jim my husband is finding the steriods are working,But his personality has changed [is this right ] He was never a laid back person he has been all off our marrage 38yrs quite snappy and allways found something to argue about. i have lived with this for so long it doesnt bother me.I have got used to it. But now he is like a bear with a sore head i am trying to stay calm but this is really bad [is this a side affect with the steriods]? :? cant wait until monday when he sees his gp hopefully with a diagnoses,i want to tell the docter about these mood swings, but i am afraid that this is nothing to do with this and i go and embarasses myself and jim and he tells me there is no connection.What do you think should i tell his gp about this? Its getting late late so i better get some sleep, so bye for now MARGARETANN

Margaretannn

I'd be VERY surprised if there was no connection. I'll be back later today with more personal observations BettyE