STRESS CAUSES FLARE UPS!

Thanks Molly, I am such a fit and healthy person but it seems every time something negative or toxic happens I ache, time to eliminate certainn people out of my life now, don't owe them anything or need their sad input. :-)

Stress is one of the major negative contributor to our health ( with or without PMR). I know pred changes how we react to external events and makes are more emotional... but at the end we cannot control other people, but what we can is control how we react (or ignore) them.  This is what I try to do. Little trick... Ask yourself if what is happening will be important to you in, say 5 years. If the answer is no, then it should not be imprtant today either.

Very well said :-) Thank you 

Oh sorry to hear that but I think when the weather warms up and we can all get our bones saturated in sunshine it might help. I hate feeling like this, I must admit alcohol does numb the feeling! Trying to be a good girlie though. Let's hope we all have a better 2016 I am only 51! Upped the pred. Today from 2.5 to 7.5 now to wait and see :-)

If your ESA has stopped you should go to Citizens Advice for help if you are too ill to work. I know links don't work on here so the website address is citizensadvice dot org dot UK. I volunteer at Cit A and we are there to help people in your situation. 

I am on a very low pension and can only work very ocassionally due to my PMR/Arthritis. My husband is very seriously disabled with Primary Progressive Multiple Schlerosis..which as the name implies only gets worse!

Last year all my extra benefits suddenly stopped and I went to CAB. eventually they were re-adjusted and put back again...then they stopped again. This happened three times leaving me completely broke for 2 months each time. We had 3 means tests involving strangers coming to our home going through everything we had.

In the end apparently my husband had forgotten about a really tiny endowment policy that had matured ten years back and the small payment each year had been assigned to my daughters account to help her pay her mortgage. It was so small that my husband had completely forgotten it. I was then ordered to pay £11.  a week for many years and made a debtor to the DWP even though they saw we had never ever recieved that annuity. (it was a very old thing my husband took out with my daughter before our houe and business was repossesed. At that time they made it a paid up policy so very little in it) I have one of my own but does not mature until I am 75. However they are very unlikely to allow me to keep any of that! I protested that they nade me the sole debtor when it is nothing to do with me but they said it was because of some of the DWP benefit being paid into my account.  My husband is not very compus mentus re bank accounts and only his attendance allowance is paid into his account.

At the end of the month I always have to borrow money to make ends meet...the DWP could see that but these people are like robots...they pretend to be kind but are actually quite viscious. After the first means test when you feel you can trust them when they say they are helping the following test become really frightening when you know they ignore the obvious and look for things they can twist. I have three cases of records and papers that go back 20 years and cannot get rid of them for fear they may turn up again. No one should go through this and certainly not three times a year. Now that is stress !

That is an awful situation to be in and trying to cope with your own illness and your husband as well is more than enough, without having the financial worry. Have you tried your local social service? You are entitled to a carer's assessment and I wonder if the MS society may be able to help. You may, of course, have tried them already. I hope someone  at CAB can sort it out for you.

Yes I have tried practically everything but the main help comes from my husbands therapy assesment nurse who comes every six months. We have had a stair lift installed because of her and are hoping for a wet room shower to come soon as my husband can no longer bathe normally...it takes time though..nearly a year after funding agreement! I am finding it more and more difficult to manage my husband and although we have a lightweight wheelchair I am getting less able to manage it in and out of the car and pushing it up slopes. Luckily most times someone will come and help but it's rather embarrasing.

 

Never, never feel embarrassed!  I, very occasionally, resort to a wheelchair and whether I am with my daughter or my husband there is always someone to help.  I am never embarrassed, I am grateful!  Really, people WANT to help in general and a big smile and hearty "Thanks" always meets with a smile and a greeting.

Links do work - if you ask the moderator or they are within patient.info.

That's why I quote a link to another post so often:

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

which is a list of pre-approved links. If you go to it you can contact the moderator to add your link for CAB to the lest so that you know where it is.

I agree with Constance. When I was able I would always offer to help push a wheelchair as would my OH when he was able. Nobody knows when they may find themselves in the same position. I realise that funding takes forever and the need is nearly always immediate. I hope they are able to start the wet room very soon.

 

I am always willing to accept it is a matter of getting my husband to accept without an awful embarrassing row because he tries to be so independant he becomes a huge burden to everyone. Then he shouts and cusses because he cant manage and tries to make me cover up for his innabilities and I don't have the strength any more. It always looks as if I am mean to him but I am only trying to reason and make life easier for us. He is extremely stubourn and most of the time I have to step back and let him get on with trying. Outside people notice the struggle and offer help. I accept the help and he brushes them off. Its even worse when he tries to cook stuff, which I have forbidden but he does it if I go shopping and get back late for lunch. The kitchen is like a war zone with broken eggs and crockery on the floor a million spoons and pots over the counter and all the packets and tins open. Takes me half an hour to clean up before I put the shopping away. Then I cannot move for a couple of hours.

There is a local chap here who has a lightweight wheelchair with an (electric) motorised steerable wheel that clips onto the front. You know the supermarket trollies that clip to the front of a wheelchair? That sort of idea with a wheel that looks like the single front wheel of children's pushchairs these days. He is often to be seen in the town here - and obviously it comes apart to put into the car and is much lighterweight than an electric chair. He's obviously just unable to walk and has full use of arms though.

Been googling - It looks similar to the Rio Mobility Firefly Powerhandcycle - any fairy godmothers around Christine? I'd buy one for my parent if they needed it.

I am soooo sorry that you are having to cope with so much.  This is nothing to what I was explaining.  I was talking about myself.

What you are going through cannot be compared to my situation. Your husband really does need professional help to try and make him more able to cope with his condition, and YOU need help to be able to cope with your situation.  

I wish you all the best and hope you find some way/someone who can advise you.

My kindest regards. Constance.💐💐

I feel desperately sorry for anyone with theis condition whatever level of disability or pain. Mainly because it comes at a time of life when if you have worked hard and brought up a family you feel the need to sit back a bit and enjoy some peace and confort. When disability hits it changes everything including any hopes and dreams you may have had. I am so grateful that I had a really active and interesting life, that I was born with talent and skills that have kept my family clothed fed and housed and for the few years that my husband was very successful and we lived well.

There are many who did not have these things and life must be very grim especially if there is little help available. Most people haven't a clue about PMR or GCA until it hits them out of the blue and there is little sympathy, even from doctors where the condition cannot be seen (although I can spot a sufferer a mile away!) t is a serious major disability which prevents any normal work and affects ones life badly' . I go along with my doctors insistance that I have arthritis because I get more help that way ( He bases this on my deformed thumb that I damaged when I was seventeen by jumping off the train as it pulled in to the station,,like all the bowler hatted city men used to do...I was wearing stiletos though)

That is always the difficult part especially for the carer. I worked with people with MS and most of them had a stubbornness. I was never sure if it was there prior to the illness or had it always been there. I suspect part of it is trying to prove something to both themselves and others around them. Who knows? I can be stubborn and often it is for that very reason. Even if I don't feel able I can be quite singleminded and determined....not always good. I feel for both you and your husband as it is very difficult for you both.

I was a volunteer in the CAB (as it was then), too.  It really gets up my nose that I can't advise/help any more.  There are so many people on this, and other, forums that need help.

My daughter says part of it is the disease - she's worked with a few patients on wards for not-MS. We have a colleague/friend with it and while he was never an "easy" person it is more obvious as time goes on - but there I suppose you still can't say can you. 

It is a scary disease I feel - I'll take PMR any day.

Yes, Eileen, I agree. I think it is a part of the disease but does it become the part when there is a fear of losing one's independence and pride? I think we may all feel like that and this is evidenced on this forum when we find we are not able to do as much as we could  before PMR. I, too, would take PMR any day.

Years ago I did a lot of translation on new medications being trialed for MS and learned a LOT about it then. There were a lot of quotations from the interviews which were quite heartbreaking.

It is a terrible disease and I know some young people who have been diagnosed with it. I worked with a few patients and it was not easy for families and carers. I am sure interviews would throw up a lot of distressing situations.