Help for partners

[sheenerweener]

Hi all just wondered what help or advice there is for our partners, when I have my bad days and have to stay in bed or I can,t do things we used to do like long walks etc my partners finds it really difficult and gets frustrated with me thus causing arguments etc between us,thanks x

[Hidden]

I think partners just need to educate themselves as much as possible about the disease so they fully understand why we can't do things sometimes. The NRAS helpline can offer advice to partners as well as sufferers..I hate that word! Sometimes I show blogs on here to my OH so he can get a better understanding but to be honest I don't want him to be a member because this is where I like to let off steam and be me without burdening him. x

[sheenerweener in reply to Hidden]

Thanks. For that Paula I do read stuff to him from here,but just get days that he totally ignores how I am suffering. I think sometimes he expects me to be normal (his words) because I take meds I do lots on good days and he finds that hard that I can do lots one day but not the next!!! Sure we will get there!!! Xxx

[bestnana]

Your partner sounds a bit like mine I think they are in denial cos they don't want to think of us as being ill cos they love us soooooooooo much He he

That's what I tell myself when mine is not being as sympathetic and understanding as I would like

In saying that when I was really bad last year he stepped up to the mark and did everything for me and I am sure your hubby will be there for you too

[Hidden]

My OH is great in general but lately he's being the opposite of yours and keeps trying to get me to slow down and not do as much etc - he says he's sick of having to worry about me as I look so ill and tired often just now from going full pelt. But he doesn't understand that I just have to go at things with everything I've got while I can - don't feel I have time to waste in bed and anyway if I rest I just start worrying more about aches and pains so being busy is diverting me from thinking about RA!

I think he's in the opposite place because he works nights and so he's always tired, with good reason, and can't keep up with me. But I overheard him chatting to my friend just now both saying "how can we persuade her to take a chill pill?" but I am right off pills with about 12/ 20 per day so they can't!! I do hope yours gets the message you need to rest more though - you could ask NRAS to send leaflets and give them to him - they are very good and easy to understand? TTx

[sheenerweener]

Thanks tilda the problem with my oh is he only works part time so when he is here mainly all he see,so is bad days he will work though it is,am sure xx

[allanah]

Hi, I have had ra for 14 months and it has been a complete lifestyle change for all of u. It affected in my case my mobility immediately and we used to do lots of hillclombing etc. My husband went from denial. To getting upset, to being overprotective but now he seems to have got used to it. His friends asked us away to a lodge on top of a cliff with 90 steps up to it and before he would have been angry with the illness now he just laughed and told them HE wasn't fit enough. We went to a patient conference and a lovely lady helped me cos I was miserable but another noticed just how "lost" he looked, I was. Too wrapped up in me to notice. So we are still trying to cope, if I'm very tired h will make the tea but I do try to keep thiings as easy as possible now with intenet shopping etc. One thing I found was that he likes me to ask for help, it seems to make him fEel wanted, so I just say could I have a cup of tea and he almost runs to do it as though that would cure me. Ii know he is suffering as much as me.he's responsible for money and looking after me and the kids now I'm retired and the house when I'm ill, its a lot for him. I'm working on the sexual part at the moment though cos since he has gone into helper mode this is trailing off, he thinks he will hurt me but I'm trying to reassure him. So this iswhat I've found, sorry for typos, sore hands today! I hope u two work through this together and of course keep talking. Hope this helps is hard to say. Axx

[sheenerweener in reply to allanah]

Hi allanah, that was lovely to wake up to,I read it out to my hubby as he is dyslexic,thanks so much xxx

[Hidden]

HI

This is really something that we are very concerned about at NRAS and would love to do more to help - watch this space! We recently did a survey looking at the impact that having RA has on partners, children/friends etc I think you will find it very interesting yet upsetting information - you can read the survey on this link nras.org.uk/campaign/impact...

Best wishes

Lorraine

[sheenerweener in reply to Hidden]

Thanks lorraine, I know I not as bad as some on here but my children just do not care how I feel,1 daughter wants me to babysit her 4 children tomorrow she don't,t realise I have to rest today to get though tomorrow I,am totally dreading it,so will look at what info is around and let her see it too xx