jsa: i had my interview thursday and a... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,797 members5,387 posts

jsa

glyn profile image
glyn
8 Replies

i had my interview thursday and a good chat lot of help and advice . i must admit in oxford they are the only gov office with empathy as i have had to use them before , so when i see them again i can ask for a disability work adviser and to bring in a letter from my doctor on wots wot with wot and they will help work things out and retrain me if necessary.so rock on me. i'll keep an update to let you know how things go of what they say and do so if it helps that will cheer me up.

Written by
glyn profile image
glyn
To view profiles and participate in discussions please or .
8 Replies
tezza1007z profile image
tezza1007z

Surely you could only work in a controlled environment, like at home? Is your Raynaulds only slight, cos with me even in a sitting position indoors makes my big toes go numb, a really horrible feeling.

I have to keep my windows only a tiny open cos any draft and whack, frozen feet.

I sometimes have to use a hairdryer to warm through to the bones.

glyn profile image
glyn in reply to tezza1007z

thats what i'm having a chat about with jsa . listening others on here yes i am lucky , oct to march is my bad times but shopping, offices, and buses, drafts manly effect me in the summer and cold rain ,i nomaly have my feet coverd so its my hands and neck that gets the worst and when the neck gets its all over shivers like flu. but yes i do get things bad in winter. working at home i dont know what i am capable of doing to be honest.

Jessie122 profile image
Jessie122

Hello Glyn, I think you must insist that you can only work in a warm environment and that even a slight change in Temperature can bring on a Raynauds attack. If I get out of bed at night to go to the loo the slight change in temperature will bring on a Raynauds attack. I do not wish to be a Jobes comforter but you need to look ahead incase things get worse.

I hope they can work sometning suitable out for you. Keep us informed.

Best Wishes

Jessie122

glyn profile image
glyn in reply to Jessie122

what worry's me is getting it going to work as you know its all hit and miss one hiccup and i wont be starting work for a good 2 hours after getting there, i dont think a boss will be happy paying me for nought; but it whoud be fun just to see his/her face if i ask to be taken to the toilet lol.

I tried working last year only 2 days a week. I became so ill and took 5 days to recover to be able to work the 2 days. I tried it for 3 months through the summer months, my body went into shock so many times and I was totally exhausted. I can only wish you good luck, fingers crossed (if you can cross your fingers). Best wishes.

daniella profile image
daniella

Last year I worked 40hrs + a week, then finally got diagnosed with Raynauds a year ago after suffering for nine years. Since then I volunteer twice a week and am sometimes unable to do that as it can wear me out for up to five days later as I suffer from constant fatigue and dizzy spells. I have been on JSA for 10 months, with not much help from the job centre with finding appropriate work and causing more stress to me. It is so difficult to find appropriate employment with this condition. I am having to resort now to see if I can claim ESA Allowance. Glyn It will be great to hear if you manage to crack the system and finding suitable employment.

in reply to daniella

Hi Daniella, I've been so ill through the condition. I'm now on ESA. Good luck.

daniella profile image
daniella

Hi Cardiff Lady I am so sorry to hear that you are suffering, you never know what to expect from one day to the next. In a way I have been lucky enough to have the support and the know how from my Mother as she is really bad with Raynauds and other added conditions. So she understands how I feel when I have many bad days. I hope you have someone who you can rely on to help you with your bad times. Keep yourself warm and try to relax for the winter. Best wishes to you x

You may also like...

Talking to family members about our scleroderma

realistic about what may or may not work). I know that this may be due to them not coping well...

Dropsies! How I hate them.

worse. I had this great idea to try to invent some gloves with little rubber spots on them like...

Effective emollient moisturisers: tips please?

have a prescription emollient cream that works really well for them?

Newly diagnosed systemic sclerosis

name for all the things I have wrong with me. I am reading all your post and finding them very...

Advice on medication to manage Raynaud's symptoms

anyone else has come across anything that has helped them? Thankyou 😊