Support?

Has any one got any form of support with there RA

In the means of there partner having to give up work to help with daily tasks?

Or getting in a carer?

What help is out there?

Im concerned about this as my hubby cant afford to give in work, (we have a noose round our neck with the mortgage)

I dont really want a stranger in the house to help out, as I would not trust them.- Which is defeating the question now.

What do you do? suffer in silence?

C :-)

11 Replies

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  • Hi there, if I remember right you're about 6 months from having been diagnosed sero-neg? So first off if that's the case, things could well get loads better for you over next year and you'll be much better able to cope. I'm not that well up on the various care services that are around, but no doubt others can answer better than me. I just wanted to encourage you not to feel too hopeless about stuff - about 18months back I was worrying about having to adapt bathrooms and so on as could hardly walk, and struggling to get my socks on. Now I can manage fine - a bit slow and wobbly at times, but I get there eventually. So yes find out what might be available and go for it, but don't forget to hope that you won't need it long term. Px

  • Quite right, its early days but when you cant do the things you take for granted- like peeling a bloomin sprout!!!!!!- it does make you feel quite redundant

    I cant even grip things cos my poor fingers seize up, even simple task like typing is a nighmare- again fingers seize up.and there so painful.

    I get so frustrated and cross.

    Thanks for the encouragement helix x there is light!

  • Speak to your ot and see whats available for aids,But get your ra sorted out first before you think about care packages. There are ways round the care work in the house. Work out what you can do,eg; ironing,have you thought about getting a press. I have one and wouldn't be without it. Look on the internet and see what aids are out there, and believe you me there are loads out there. Do you have a family member who would work a few hours for you,There are ways round everything to make life easier.

    Not sure if this of any use to you. Take care sylvi.xx

  • Thank Sylvi

    Do you know- I never thought of a press

    I have an OT appointment and Physio -coming up soon, I will see what they suggest

    I could do with a robot!- to clean, cook, and do the school run,

    Yes it was very useful Sylvi thank you xx

  • The best thing we did was to install a walk in shower. Not as expensive as you'd think. Help with heavy jobs though ra is so variable that can change. Simple gadgets for opening bottles jars etc. Change pace of life so you can get up slowly. I hope you can sort yourself out I'm sure things will get better

    Xx

  • Thank you Cathie xxxx

  • Hi. I agree with Helixhelix. Its early days in the grand scheme of things. You will get a lot better in due course.

    When I was diagnosed in 1992 I visualised myself in a wheelchair within a fortnight. I still don't need one!

    I have had splints and finger straighteners. Insoles. Mattress topper. Higher chairs ... a second banister, all sorts of small changes.

    Some things get tricky, lifting, ironing, carrying shopping. But you will learn ways round things.

    OK so the clothes get folded straight out of the tumbler, rather than ironed. And the Tesco man brings heavy shopping. And the house is not so spotless anymore. And the garden is mostly evergreen shrubs and heathers. Its a learning curve.

    I feel sure you will be much fitter and more mobile once the meds are sorted.

    Best of luck!

  • OOOhh Finger splints YES!

    I cant straighted mine- I have to ease them out on a surface and wait til there ready....

    The medication has yet to start working,but with the changes Ive had to make -having suffered side effects of previous meds- its still early days, and the pain and stiffness is still niggling.

    Thank Phoebe

  • Hi, to follow up a bit more just wanted to add that you also need to give yourself time to get used to the RA rollercoaster cos when it's heading downhill at a fast pace you have to hang on to belive that it will go up again in a bit. One of my worst times was not long after diagnosis when meds were still not fully working and my OH had to go away for work for 10 days. I was in severe pain and big problems doing anything. Anyway one day I fell off the toilet trying to stand up, and got totally stuck. Couldn't use my hands to pull myself up etc etc so took most of afternnon to crawl back to bed. I was just in total misery. But now I can't believe I'm the same person as things are totally different now. So please hang on in there - changes take a horribly long time with this, but it can get turned round. You will be able to peel sprouts again, just not quite yet. Polly.

  • Hi Reikimaster

    As others have said, this is early days for you, so hopefully things will improve with time, and there are also a lot of useful products around to make life around the home easier. Your OT can advise, or there are lots of websites selling various equipment, but always shop around as prices can vary greatly. You may also find some of the members' tips that we've gathered useful:

    nras.org.uk/about_rheumatoi...

    It is also worth seeing if you could be entitled to any benefits. Disability Living Allowance (DLA), for example, has a care component, which is given to people who struggle with some of the tasks you've described, such as chopping vegetables. You can then use the money as you please, so could pay for someone to help you out, or just help you to buy gadgets and things that make these tasks easier. You can read about this in our benefits booklets (one on benefits in general and one on DLA), which are available to read or order online:

    nras.org.uk/help_for_you/pu...

    Hope this helps

    Victoria

  • Thank you Victoria- Have not visited this site for a while so im catching up.

    I am going to look at this site you have provided.

    Thanks again xx

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