Nobody mentioned RA also drives you insane!!!!!

There are many things the consultant tells you about RA but not the feeling of being under house arrest. I have been inside now for nearly a week, I have been taken off my medication because of my wcc and my arthritis seems to be having a field day. I live in a first floor flat so I can't even go sit in the garden without causing excrutiating pain on the stairs. How do you guys cope? My hands are all mangled like captain hooks hook and if i watch any more rom coms I might just jump out the window :-). I'm in need of any ideas or stories of what you do when your under house arrest?

12 Replies

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  • Hi Marnie, I can't really give a definite answer as to what you should be doing, I'm still finding new things to occupy me and I've been off work for the whole 17years of my diagnosis!!

    It is extremely difficult and does drive you insane at times, but over the years I've learned to accept what's happening to me and go with the flow of my RA basically. It's all part of accepting your RA and what your going through at the moment, just remember it won't always be like this your just in limbo at the moment because of your wcc etc.

    I'm 46 married and and have a 16 year old, so trying to keep the home running is plenty for me and I still get help in doing that. Household chores for me are always spaced out, a little one day a little another. Not something I accepted many years ago though I still tried to carry on like RA didn't even exit but I'd always pay the price with a weeks stay in hospital.

    You will get there I know it's hard at the moment but be patient, it wont always be this way.

    Take care

    mandy xx

  • good advice from Mand as usual!, reading, cooking., surf the net,,

    with v bad hands is a jigsaw possible?. I know I cant sew, but some people

    Please dont jump out that window. I guess that was a comment in jest?

    have any friends you can ring? or visit you? x

  • I couldn't jump out the window because I can't use the handles hahahaha :-) I have an iPad so it's easy to surf the net and empty my bank account. Today I have found a distraction qvc :-) x

  • I know about this cabin fever! If I go out and do something I will end up having an afternoon nap and I'm trying to finish some painting for an exam. One thing to do is to organise your day so that you have something to look forward to always. I use Radio 4 a lot so the programmes help me to structure my day. I have to phone my elderly father, which I try to do around tea time. I never have lunch before 1 or supper/ tea before 7.

    As to what to do I share your enthusiasm for the ipad. You can take it anywhere cant you. Mine is a bit old and heavier than id like it to be.

    Cathie

  • Hi Marnie - cabin fever has been getting to me too! Especially this time of year, all the family out to work, and old man and son don't come in from the farm until really late a night. When my daughter is working a late shift she doesn;t get back until 11 so i can spend all day and only see them for about 2 minutes each!

    I have tried snap - the other bloke kept winning!

    Tiddly winks- but my fingers got too sore.

    Listening to books on tape because I can't hold one for too long - but I kept going to sleep and missing the end.

    Baking - I ate them all and put on weight.

    Knitting - wrists and fingers can't cope

    Computer - get a stiff back and aching elbows and wrists and fingers

    Someone suggested I wrote down everything i want to do that day. Put by the side of it a maximum time you want to spend on it, then get a timer and time each activity. That way you get to do loads of stuff, and get to move about and get distracted from your pain, and also get the rest you need.

    E.g. Read for 15 minutes

    Sit down have a cuppa - 5 minutes

    Sort out a drawer in the bedroom/kitchen - 15 minutes

    Sit down and listen to the radio - 5 minutes

    Check your e mails - 15 mins

    Sit down and watch TV

    That's one hour - now do it all over again!

    Hmm probably easier to just go round the bed!!!

    Julie xx

  • thats very organised Julie xx

  • Yes, but almost impossible to do! For me any ways x

  • My hubby is buying me a laptop for my birthday this month,so that i can sit in chair or lay in bed and chat to all you lovely people. There are days when i feel like throwing all the pills in the bin, today being one of them as i don't seem to get any relieve from the drugs. Yes i've said that i would be better off dead so i know where your coming from.

    I love this site as there are folk who know where i'm coming from. Also its cheerful and it helps most of the time. Not much when i'm feeling this,but it makes me feel less alone.

    My love to you,

    Sylvia. xx

  • I think I am really lucky that I am able to carry on working - I have an office job so apart from the keyboard/mouse its not too strenuous, and I just have to get up every 10/15 mins to walk round the office, stretch out, get a drink (or any other excuse I can find!). On really dodgy days work is a real struggle, but luckily we work flexi-hours, so I can easily cut my day short and go home and die quietly without taking chunks out of my sick entitlement.

    Maybe, to stave off the boredom, try treating your day like you are at work? Like previous comments from others above, set some reasonable achievable targets, schedule in lots of breaks, and dont overdo it. There are lots of online courses that you can do, where you work to your own timescale, so if it was a really bad day you could give yourself a day off? That might give you something tangible to concentrate on?

    If I was as many years down the line as some of our other friends on here, I might be able to give some even better ideas!

    Hope things start to pick up soon for you, and in the mean time, chat to us :-)

    xxx

  • gosh who is that nice/ considerate employer? you lucky, girl.. I get missed If I dare pop to the loo, I virtually have to say im going to get glass of water and some pain killers... if I have to leave the room!

  • My hands are mangled a bit too. I took up cardmaking and scrapbooking after watching QVC. They do some good kits to get you going. I also like video games so I play on my Xbox 360 a fair bit, even though I'm 41. And I surf the net a bit too. Using a laptop is easier as I can't hold a mouse so the trackpad is much easier to click on things. It can drive you mad being stuck in all day. Just need to find something that you enjoy and can do without hurting yourself.

    Michelle

    x

  • hmm be careful when I was v bad got through some pennies doing phone./ internet/catalogue/ shopping. it makes you feel better, I got comfy shoes etc without leaving the living room.. but later the shopping hi is replaced with a financial low when the bill comes in..

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