Bad day.

[Ellieellie]

Have pain in hips and pelvic. Trouble being down. Getting myself dressed is laughable if it weren't real. Had rituximab infusion last week and had problems with heart rate. Second one next week. Having a flare up that my right hand is itching so much I have broken the skin and drawn blood with scratching. This is my third cycle of Rituximab. Have asked them to give me it at a slower rate next week. So bloody fed up with this. I try to keep positive but some days it's just so hard. I gave up work because of this and don't get my state pension for another 7 years at 66. Thank you Government for that. Trying to do things around the house is so difficult. My husband travels a lot so I am left to cope. He set the fire on Monday but i didn't light it until his return last night as I could not manage to refill the log basket once it was empty. I am travelling to the USA in July which I think will be my last long haul trip, unfortunately. I am going to ask for a steroid injection before I go if they will agree. What annoys me is when people say you look alright or it's only arthritis. They have no idea and I suppose i shouldn't expect them to. I would so love for them to walk for a week in my shoes and even that's difficult. Just feeling down today I guess and need to whinge to people who do understand. Hope you all having a better day than me x

[BenRees21]

I had to quit my job in December because of RA! I’m only 30 and don’t have it as bad as you do (yet!) but I know exactly how you feel because the place I worked at couldn’t understand my condition (colleagues included!) and were unwilling to put anything in place to make my life a bit easier! I’ve been quite down since quitting my job, I feel like a failure and am now looking for more suitable work. In the meantime I have to sign on for my JSA which I find degrading and the people who work there don’t understand RA either so have me going for unsuitable jobs and I have to keep trying to explain it all the time! I hope tomorrow you have a much better day! 😊

[Hidden in reply to BenRees21]

Ben shouldnt you be on ESA not JSA, you have a long term condition?

[BenRees21 in reply to Hidden]

I’m not sure? How would I get ESA? Don’t you have to go for an assessment?

[Hidden in reply to BenRees21]

Not at first, think you need sick note to start it but surprised job centre haven't said because fairly obvious you ve got limited capability for work. CAB are really good on things like that. It's not fair to send you for jobs you can't do, goodluck. No expert but that doesn't sound right to me. Also nras helpline are really good. Also should be disability officer at job centre.

[BenRees21 in reply to Hidden]

Thanks for the info. When I go to sign on next week I will ask about it and see what they say.

[Backy in reply to BenRees21]

Hi, you will have to have a work capability assessment, if you send for NRAS Benefits & RA you will find all the info.

[EmmaS-NRAS NRAS in reply to BenRees21]

Hi Ben, This is the link to the benefits booklet Backy mentioned below. You can download it or request it to be sent by post. nras.org.uk/publications/be...

There are two work-related booklets we have as well, one for employees and one for employers - nras.org.uk/publications/all

Our Helpline are also very good at signposting people in the right direction if you need any further advice.

Best wishes

EmmaS-NRAS

[Hidden in reply to BenRees21]

Ajay's right about PIP too Ben, again nras do brilliant book to guide you, CAB online/ in person too, every little bit helps. It is a minefield at first and degrading and no one understands the disease, you're right ...but it's a serious one and you're on pretty pokey drugs, mtx was developed for chemo, plus chronic fatigue. Really good luck, sorry you got it so young x

[Ruth12345]

I really feel for you both. I am gratefull im not younger. I had to stop work as well. I stopped 6th form teaching just over 5 years ago as I suddenly had 13 years to retirement instead of the 7 I had planned for. I had always wanted to foster and did for 4 years before RD got me. One main problem was I didnt realise (and I should have, my fault. Wasnt told but should have realised ) that even though I worked for local authority I should have paid my own stamp, so no sick pay for me. I was 60 in Jan so understand how you feel. I finally relented and resigned from fostering in Jan. Took me that long to come to terms with fact I cant have anymore children. So had I stayed teaching I would have 5 years more pension and got sick pay. Im not having best of days as struggling with fatigue but not as bad as you two. Not whinging. Its hard.

[popsmith1874]

Hi Ellieellie I understand what your going through as I had to be pensioned off medically at 50 2years ago but luckily I have my work pensions and get pip and esa , but I was the same people don't understand what we have to put up with having RA and after finishing work it took me 6months to adjust to being at home, but I'm used to it now and go to body conditioning 2 a week which helps and have my routine hope things get better for you xxx