Making things work...

itchyextremist

If the intimacy is still on-going and good, then that's half the battle. I mean after sex is a great time to have a chat about how she speaks to you. I had similar issues with my partner, but once I really drove home how she speaks to me was upsetting, things really changed for the better!

JoW123

steveouk wrote: »

She has RA in her hands. The pills she is on now seem to help and she is not in as much pain. She can do washing up no problem. I just don't want her retreating into a life of TV etc. I don't think her weight gain has anything to do with RA she just had a lot on at work at the start of the year and has got into being less bothered about her eating etc. Anyway she started back at weight watchers the Wednesday before last and lost 2 pounds in the first week without trying too hard.
We were at her grandparents last weekend and an aunt said was my OH still running and she said no but she wants to get back into it. I think she has got into a rut and yes the RA had an effect to start with but now she has the medication helping her she can get back on track.


No matter in what way I try to persuade her to do things she will only do it herself. so I think I need to try and distance myself from her and get on with what I need to do. I know that when I am happy she is too and that when I am unhappy it brings her down. Though no one can be happy all the time and often I reach out to her and all I get is batted back saying don't be so stupid and all I want is to talk and she just wants to retreat away into a book or the tv.

I don't think you have any idea of the complete exhaustion that accompanies rheumatoid arthritis. It's not just 'in her hands', it's an autoimmune disorder that affects everything, and you can't just 'get back on track'. One of the worst things about it is everything thinks just because you look okay and take medication then you are!! I am sure this will have affected her motivation and energy.

Jojo_the_Tightfisted

So, pills. Neurofen? Cocodamol? Tramadol? Steroids? Methotrexate? Plaquenil/hydroxychloroquine? Are they DMARDs, antiinflammatories, antimalarials....?

Do you know the side effects of these tablets?

Did you know that RA doesn't just affect a joint or two, it affects the entire body and actually reduces the average lifespan of someone with it by 10-15 years? Did you know it vastly increases the rates of lymphoma? Did you know that people can die from heart problems caused by it? Or that one of the frontline treatments for it is taking a lower dose of drugs used for chemotherapy, which is known to cause vomiting, hair loss, extreme exhaustion and vulnerability to infection?


RA is the immune system attacking your own tissues. It can be the joints, it can be the heart, the lungs, the eyes, the tendons. It's her whole body. Flares are known to affect mood as well.

If it's a new diagnosis, she will have recently found a lot of this out. It might be good if you did a bit of reading up as well. After all, you do have all those weeks away in which to do that. The weeks where she's been dealing with this alone.

steveouk

She is on....hydroxychloroquine 200mg twice a day, sulfasalazine 500mg twice a day, and naproxen 500mg twice day.

steveouk

I have found some interesting things on the National RA society website to download and print.

Jojo_the_Tightfisted

steveouk wrote: »

She is on....hydroxychloroquine 200mg twice a day, sulfasalazine 500mg twice a day, and naproxen 500mg twice day.

That would make me puke a lot. In fact, I couldn't continue on plaquenil for that reason. And why I don't take naproxen at all.

It takes a long time to get just the right meds with minimal sideeffects and, even if you do, that's just about when they can stop working and you have to start over. I've been through a long list of the things.


I used to go kick boxing, the gym, swimming, weight training, etc.

At the moment, the nearest I get is hydrotherapy at the hospital. Half an hour in a pool warmer than the baby pool, a bit of walking, a couple of lunges and I'm asleep for five hours when I come back and in more pain for the next five days. To me, I'm being worn out by just taking a few steps in a big, warm bath.

Some people get back to old activities - but there's a good chance that she won't be able to run again, as most rheumatologists cringe at the thought of the impact.



There's also the impact of other people 'you're not old enough to have arthritis', 'my nan has arthritis but got better when her joints were replaced', 'oh, I broke my ankle once, that was really painful', 'why don't you just exercise/lose weight/think positive/eat fish/don't eat fruit/wheat/milk/acidic foods/potatoes/tomatoes/just have a spoonful of vinegar a day and that'll fix it'


Look up online the RA hand deformities - they're scary. Actually, the whole thing is scary. Especially for the person who has it.

steveouk

its only her hands that are affected at the moment and she has not said she has any problems with day to day activities. She works as an accountant and has had no issues with work.
She has seemed ok energy wise of late.

itchyextremist

RA doesn't excuse her actions

steveouk

Yes whilst I empathise with her RA suffering and when away always asked her for updates on any treatment or medication and how she was feeling - I will always pickup medication or sort doctors appointments out for her when she is home too.
I just want her to not snap all the time and be reasonable. maybe I suffocate her and she is more independent than me but I do feel although its fair to expect me to do most of the work. I just feel we need a little less of the double standards and that everything is my fault. Anyway better get on and do the hovering and diner!

Jojo_the_Tightfisted

By the time RA affects some joints, her immune system has been going a bit nuts for a while.

I get a really low mood when I'm going into a flare - before there's any obvious pain or inflammation. And I find myself biting back some really mean things or taking myself off to bed/breathing a sigh of relief that he's working in the evening, just so I don't have to risk unleashing it all on him. As far as I'm concerned, at work during a flare, I'm surrounded by total morons and idiotic children. But I have to be nice, which is mentally exhausting.

I also feel guilty about being physically a bit crap. I've done sod all other than sit on the sofa since Tuesday once I've got in from work. Except yesterday, when I was sent home for chucking up and spent it all in bed instead. In that time, the oh has done tons of washing, tidying, ironing and all the shopping, cooking and cleaning. And when I offered to do something today because I've been sat on my behind for so long, he's told me not to be so silly. Doesn't stop me feeling grumpy at myself for not being able to do it.


Her jokes may have been wide of the mark, but having RA, keeping a job, hiding its impact at work, trying to be nice, missing exercise, feeling like everything you ever planned is gone because you're going to be an old, bent up woman before you die early, and trying to quell those feelings and fears, can breed a gallows humour.



You might not be suited in the long term. But whilst there's not necessarily an excuse for her reactions, there could be a part explanation for some of it.