Rhmertoid artheritus and bordum

saving2cleardebts

Hi all,

I am new to MSE and not read this section before. So though id say hi, im 24years old and was diagnoised with rhmertoid artheritus this year which has ruined my life, i have damage in my feet, extream pain and fatigue but terrible sleeping pattern too! I also have a heart condition called fallots and i have asthma too. I was recently awarded DLA for medium rate care which i as advised to appeal over by my support worker as id become really depressed when being diagnoised with artheritus at such a young age.

I had to leave univeristy due to the serverity of the condition, unfortunatly i find driving a pain now and quite honestly dont do it because i seem to be in constant pain, my hands, feet, elbows, knees are swollen constantly and i have lower back pain too. Joys of RA!

Anyway i was advised that at the moment i crnt work or study f/t due to my health being so poor but i am absolutly bored stiff and feel so useless not being able to contribute to the household bills ect. I was ment to be getting married in feb but thats had to be cancelled because of my illness..

Anyone in a similour situation? Anyone no of anything i can do to help with the bordum?

Sorry ive gone on quite a bit

x

jazabelle

Have you tried perhaps volunteering? You could do one day a week, one hour a week even if that's all you can manage. A very low demanding type like answering phones? I realise you say you can't work, so sorry if you'd already thought of that and can't manage it.

Perhaps take up a craft? Do you enjoying writing, painting? Making things? You could make Christmas/birthday cards and sell them for a bit of extra cash.

I think there is a board on MSE called up your income, which has surveys, mystery shopping, reviews etc that you can do when you like to make a bit of income on your own terms. I can't say they would cure your boredom though!

You said about giving up uni - is there no way you could study part time from home? Or maybe take a couple of one off classes at your local adult learning college? I've just signed up to a couple myself. One of which is Yoga, to try and stop my doctors whinging about doing no exercise! I'm really worried though, I've tried very low impact stuff specifically for chronic pain and found it too much. Another is a one-off buteyko course, which is to help both chronic pain and asthma. They are discounted for people on benefits, so the buteyko was only £5.

Out of curiosity, why would you appeal medium rate? I guess because I've just been turned down for DLA at all, I'd be more than thrilled at medium rate. I have quite similar conditions to you, so was very upset to be turned down. Also how do you get your support worker? Is that through your GP?

Oldernotwiser

The obvious solution for your problem would be to study part time with the OU. As you're on benefits your fees will be paid and if you completed any years at university you would get credits for that. Have a look at https://www.open.ac.uk

Hippychick

I understand how you feel I too was diagnosed with RA a week before my 25th birthday, like you I initially thought thats it my life is over. I tried to break up with my boyfriend (well gave him an out which he refused) then spent like crazy online shopping buying things to make me 'feel' better.

That didn't work I ended up in debt which now 4 years on has all been cleared, I married my boyfriend and we have just bought a house together. It may not seem like it now but once you have adjusted to the shock of the diagnosis and have found a way to 'manage' your pain then things do get better.

Initially I tried to stay at work for as long as possible and lasted 2 years before it all came to a head and I had to stop, initially I went stir crazy at home but then discovered loads of hobbies to occupy my time/brain.

I started sewing and writing, making Christmas presents etc. I also did an open university course which is studied from home and in your own pace which really helped. It may be worth looking into the OU to see if you can continue your studies and transfer some credits over?

I also managed to enrol in an evening class learning about computers, it was only an hour and a half a week and because it was at night my hubby was able to drive me there - this helped immensly not just because it exercised my brain but it gave me some social interaction I could call my own. I found being at home all day and potentially not speaking to a single other person soul destroying.

I am now a volunteer for the CAB, because it is voluntary there is no pressure for me to attend whenever I have a flare up (which is unfortunately very often ). They are completely understanding and I only have to volunteer for 3-6 hours a week which is perfect.

I hope you do find something to help with the boredom, feel free to pm me if you want to moan about RA, sometimes it feels like no one else understands and it can be helpful to talk to someone in the same situation.

tanith

It sounds like they are not managing your R/A very well if you are in so much pain. Maybe your medication needs reviewing to see if there is something that would be more affective and give you a better quality of life.. you should certainly be able to drive if you want to and better pain managment would help. There are also medications that would help you sleep better at night so that you are better able to manage your days..

I have O/A and use this site all the time for information.. www.arthritiscare.org.uk take a look ..

Hippychick

tanith wrote: »

It sounds like they are not managing your R/A very well if you are in so much pain. Maybe your medication needs reviewing to see if there is something that would be more affective and give you a better quality of life.. you should certainly be able to drive if you want to and better pain managment would help. There are also medications that would help you sleep better at night so that you are better able to manage your days..

It's possible, regrettably with a lot of the RA drugs you need to have had treatment for 3-6 months before you even see any benefit if at all. I am on my 7th drug now and for each one had to wait several months before they could establish it wasn't working and I should try something new.

I think arthritis care offer pain management courses which may be useful in this case.

Edit : found the courses http://www.arthritiscare.org.uk/@3235/Selfmanagement/Workshopscourses certainly worth looking at.

saving2cleardebts

Hi,

Thank you all for your replies. I had thought about doing some volunterring as there is a local new start round the corner looking for admin volunters (which i have experience in) but i was advised to wait until my pain is better under control, as today ive not been able to do much with out crying because my right foot is swollen hurts with the smallest of weight put on my foot. I have been waiting for the all clear from my cardiologist to start on Methrotrex and recently got the go ahead and so will be started on it at my next appointment in 2 weeks time, but as hippychick said it takes up to 6 months to kick in (which i have been advised by my rhmer too).

I ma currently looking into a possible short course at either my local college or via OU.

The reason i was advised to appeal is in the hope i may get low rate mobility to help me get my car get adapted so i can use it again, possiblity of getting a special handbrake so doesnt need as much strength to get it down (as an example) as when my partner is out i become house bound which is really depressing.

I will look into buteyko course's this sounds interesting thank you very much. I got my support worker via my GP i see him weekly and its great just to talk to some one other than my partner (we live together in a bungalow due to RA)

Tanith, thanks for the link i shall take a look.

Hippychick, i tried my hardest to stay at uni but in the end i had to go by what both the uni & doctors were saying and that was to leave as it was causing me too miss to much, i was deverstaed to leave it was the one thing i had that i could be successful at while i was in pain if that makes any sence? I also no what you mean about buying things to make you feel better i also did this but ive also become really depressed and ignored everything once leaving uni and my partner had to take on all the things ive done in the past with regard to fiance's wasnt good! Im glad to be back into control of the finances now and that has given a purpose but we have had to live on such a low income compared to previously it is just so hard.

Thanks for all your messages again,

x

Ruby_Moon

Oldernotwiser wrote: »

The obvious solution for your problem would be to study part time with the OU. As you're on benefits your fees will be paid and if you completed any years at university you would get credits for that. Have a look at www.open.ac.uk

I thought that you had to pay for OU?
You can take on a Uni course if you are on benefits but it has to be at an establishment?
Cant find anything about concessions on that link, can you point me ibn the right direction please?

Jojo_the_Tightfisted

Nope, OU is free if you are on benefits. Plus you can get an additional grant towards general expenses and a computer. The link is to the home page. If you click on the top right link, 'study at the OU' you get to this page;

http://www3.open.ac.uk/study/

On the third paragraph down there is one link to financial support and one for the additional section on help for disabled students.

Plenty about support there.

RA sucks big time, but once you get into a decent meds regime, it's more of an inconvenience.

Hope that helps.

Oldernotwiser

Ruby_Moon wrote: »

I thought that you had to pay for OU?
You can take on a Uni course if you are on benefits but it has to be at an establishment?
Cant find anything about concessions on that link, can you point me ibn the right direction please?

Sorry, JoJo and I are right. You fund traditional universities by loans and grants, although you can carry on claiing DLA; full time courses aren't free if on benefits

starnight_2

arthritiscare.org is good as is http://www.rheumatoid.org.uk/

I understand you are finding it hard at the minute and being bored just sucks. Would it be possible to look for any local support groups, at least it might get you out of the house and seeing other people. It might surprise you just how many young people have arthritis, so there may be something for you out there.