1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Managing carer's responsibilities with PMR

Posted , 13 users are following.

christine_fay
christine_fay

Just in case there are others who are in a similar situation, I wonder if anyone has ever found help or even sympathy for the terrible dilema of having a condition that others do not recognise, have no understanding of

and little sympathy for?

Apart from Doctors, unless other people know about PMR and its limitations we are very much alone.

I have the awful responsibility of caring for my husband who has had Primary Progressive Multiple Sclerosis for ten years now. He gets worse every week and now has meltdowns at every opportunity. I only have to speak about needing something or asking him not to do something because he is no longer capable and breaks so many things, a full anger fit and shouting meltdown will occur. It is really upsetting I am feeling absolutely drained and despondant. I work from home mostly so I can care for him but he makes this very difficult. Without the work I could not pay the rent or bills even though we have a small subsidy....Sorry to moan and be miserable but there is no one else who seems to care or understand....even my own children have no idea how awful this situation is.I have recently been put in touch with a 'buddie' group who will find him a friend which may give me an afternoon a month of relief... however even that would be marvelous!.

 

5 likes, 57 replies

57 Replies

Prev
  • TIsser
    TIsser christine_fay

    Posted

    Can understand how you feel as not much is known about PMR you get little sympathy or understanding about the symptoms you are if suffering from. I had not heard of PMR until is was diagnosed last year but have been surprised how many people have this awful illness.  I have been lucky with my local medical practice who seem to be well informed regarding PMR.  

    I hope that life gets a little easier for you and the buddy systoms gives you some relief. 

  • Susanne_M_UK
    Susanne_M_UK christine_fay

    Posted

    Christine, I belong to MrsO' s Chertsey group and they are a very friendly group, so if you can make it, do.

    I won't be there at the June meeting, as I'll be on holiday, fingers crossed and GCA permitting, but you may just find that it will give you some much needed support.

    I'm so sorry you have this battle. I'm so lucky that my other half is supportive. I've taken it for granted up to now. but I'm one of the lucky ones in that respect.xx

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.