Rhmertoid artheritus and bordum

Paparika

saving2cleardebts welcome to the disability and dosh section.

I think between the pain and the fatigue we get bored too, but you need to look at your life and make changes now (even small ones) learn to listen to your body.

i'm only 39 with fibromyalgia, uvitis, deaf in one ear maybe going in the other, and today i might find out if i have ms as well... devastated, yes... but i have a choice, allow depression to take over, or dig my swollen heals in and show it the door...

We all have low days hun, believe me we do, I'd love to do a college course at home but i don't think that's possible for me as i wouldn't remember a thing that's the fibro fog for you.

not sure how long i could type either as my thumb is painful....


you need a good support group (disability and dosh is a mighty fine one)

pop into the old crocks cafe, take a seat and have a cake, or apple or what ever take's your fancy and its pet friendly too :T

LameWolf

Hello saving2cleardebts.

I understand the boredom only too well!

For what it's worth, I do the membership records for an organisation I belong to; everything gets posted to me, I process it, and my husband takes the stuff to post out to the members when he goes to work the following day.

Also, I've just signed on as a "host family" for a home-from-home dog care service - people who don't want to put their dog in kennels can have the dog looked after by people like me! In fact I have a canine guest coming on Thursday for four days. It's fun, and gives me an excuse to get the mobility scooter out (walkies!!)

Just a couple of ideas I've found helpful.

vikki_louise

Sorry your life has been turned upside down. As someonesaid, what about doing some volunteering? I set up www.postpals.co.uk and run it from bed (due to my health), it keeps me sane and helps others at the same time

sarah_smurf

Hi I have ra, was diagnosed 3 yrs ago at the age of 24/25.

If you are struggling have you got help to appeal for the mobility element also?

Have your rhuemy got you on any medication yet, and have they offered you any steroid injections to help ease it while waiting for the meds to get into your system and start to work in controlling the inflammation?

Hope you get a bit of relief from the symptoms

cazjenki

I was diagnosed wth RA when I was 21 and had just had my second child. I am now 35 and am coping well with it now although I do have bad days. I have been fostering animals for my local charity and doing that has helped me loads. Its keeps me occupied now that my sons are less reliant on me. I have always been on lower rate DLA could never get medium. I am on Income Support but have to go on job seekers next week, which I am dreading, not because I dont want to work but because I know how unpredicable my arthritis is from 1 day to the next,some days feeling to ill to get out of bed and have to rely on my sons and parents to help me out. I have absolutely no idea what type of work I can take on as a single mum, any ideas : )
I would definetly look for some light voluntary work it gives you a reason to motivate yourself I think. I know only to well how depressing having RH is at a young age. I cried myself to sleep for months wondering how I was going to cope with 2 children under 2. I got some great advice from my Occuptional Therapist who gave me knobs to help switch my fire on easier, to turn my taps and open jars etc. You keep your chin up you will find something to do eventually : )

saving2cleardebts

Hi All,

Thanks for all your replies. Cazjenki can i ask why your being put on JSA sorry if that sounds rude im just wondering! Sarah_smuf i have been given steroid tablets and calcium chews. I have not been given any other meds because i have a heart condition and im currently going through tests for possible heart beat irregulation (just to add to my problems!), they are also looking into doing heart surgery and dont want new drugs started until they have sorted my heart out .. wether i agree with this or not im not sure!

I have been really bad again last few days ive now got extream stiffness in my neck to the point my partner could not go out at all today

I have a support worker and a social worker (2 seperate people) who are trying to help me at the moment with DLA. Also my OT has been great as well she has gave me a knob to help me open the front door! I have had new tapes installed and they are looking into a grant to get my doors and toilet changed .. i have real issues.

I have tried a walking stick which was good when my hands were feeling good which was great. However now my hands are swollen (like lobsters) i crnt use it cuz it hurts! I cudnt even cut my food up last night

I am just so bored still but have absolutly no energy recently im hoping that i might start feeling better so i can go forward but after the last 2 days ive had this seems a long way off ..

xx

cazjenki

hi again, I have to go on JSA because my youngest son is now 12, it used to be 16. Sorry to hear your feeling so unwell, I know how you feel. I know its not actually a hobby but have you tried facebook, that can really help with the boredom but really is addictive lol, nice to catch up with old friends etc. take care.

nichart20

Hi just wanted to let you know you can have a life with RA I was diagnosed when I was 20 I ended up leaving my job as it was a physical job and just too much for me as the pain was so bad, I was on job seekers then went onto income support I think, I was so low nothing to do all day and in so much pain then I got treatment the pain did get better but did have a few low points I had both knees replaced my hip replaced and both elbows replaced,
I now have a full time job in an office and I am studying part time just got married and I am trying for a baby so life does go on but it's not easy.
I hope your RA settles soon and you get a treatment that works for you, it was hit and miss with me and when I found a treatment that worked it made the world of difference

makesnosense

Hi, I was in a very similar situation to you. I have sero-negative inflammatory arthritis, it affects me in a similar way. I also have asthma, and endocrinology problems. I was 18 and in college, one night my knee just started swelling. Soon every joint in my body was swollen, and wouldn't go down none of the doctors managed to figure out what was wrong with me for two years. This meant I had no pain control for the duration of that time. I had to drop my A levels and defer my place at uni. I became almost entirely housebound and lost my friends because I was unable to do anything and became quite depressed. Also as you said the fatigue was one of the worst points, I would go to the doctors then come home and sleep for 18 hours. One of the worst things was getting people to understand with many of my teachers telling me to suck it up. However this at least puts me in a position to offer some advice. Firstly never underestimate the value of a good book, and yes I'm aware they can hurt to hold mine certainly did. You can find ways around this, book holders aren't too difficult to get hold of, or you can get a book on tape(most libraries offer these). Secondly I was in too much pain for any form of exercise save hydrotherapy (it is worth asking about this as while you are in the water it supports the joints). Sewing may hurt, so if you do take an interest it is worth thinking about how you will cope with that - I took a patchwork class instead because machine work was easier (still painful though). If you decide to do a course on an academic subject bear in mind that your teacher (if you explain the situation) may allow you to use a digital voice recorder (like a dictaphone) instead of taking notes and that if you become in a position to study an examined subject you can get a scribe to write your answers. It is also worth noting that if you are on incapacity benefit you have to have any volunteer work you do approved by the job center. By all means this is not everything you can do and I am still getting used to all this (am 20 now), but be pushy or at the least inquisitive when talking to your doctors it took me a while to learn this but you don't always get help unless you fight for it. Also get a wheelchair, I spent so long trying to stay out of one but I am far happier now that I'm in one. On the more moneysaving note there are so many deals you can get when you are disabled - discounted theatre/comedy tickets (usually for you and a companion) and at cinemas you can get a person in for free with you if you are disabled (like permanent orange Wednesdays. As for your wedding I have no idea if this will help but try to think of ways around the worst parts of your problems e.g. being drawn in a carriage up the aisle (probably best in an outdoor ceremony) or in a sedan chair, have small food at the reception so that you don't have to saw your food up, and energy wise try to do it in whatever period of the day you have the most energy for and don't schedule your honeymoon for the next day so you have some time to recover. I hope some of this helps and feel free to PM me I'm still building myself back up and could use the company aswell.

Jojo_the_Tightfisted

It's going to be tough for you at the moment, but it will pass, believe me. Not that I'm advising anything medical, but a steroid pulse, which is an injection into the muscle rather than a joint, can have remarkable results much quicker than with tablets - and there isn't such an issue with stopping the meds as the level gradually decreases over time. Perhaps you could ask whether they have considered this?

Turning to study, you can claim a Disabled Students' Allowance, which can cover so many things essential for study as a result of your conditions - taxis to tutorials, an adapted keyboard, the cost of an assistant in exams, extra time in exams, perhaps even a visiting tutor. It's even possible in some cases to submit audio work. So Uni isn't over for you, just delayed a bit.

In the meantime, you could try a short course from the OU. It may only be 10 or 15 UCAS points, but it means there's a little bit of study to keep you ticking over, the tutorials are done by telephone and there are tons of different courses you can choose from. And it's not so much pressure.

BTW, cazjenki, if you receive a disability benefit, you aren't expected to find work when your child reaches 12. They just haven't ticked the right box to show you are claiming for disability, not as a lone parent. (yes, I know this sounds rubbish, but trust me, it happened to me at first)