wanting to work when you have lupus

[suzannah16]

I am long term unemployed getting ESA and in the support group. I worry that when I have to change to UC that I will be declared fit for work and would like to find something I could do before that happens. I find the stress of trying to convince people I have health problems is affecting my health and if I could just get of benefits this would really help. I have lupus which is attacking my kidneys [only mildly I guess as I don't need dialysis] I am constantly tired, I have high blood pressure and blood clots, and an ileostomy which gets very noisy and I feel too embarrassed to have a lot of human contact [don't want to have to keep explaining it to everyone I meet] I get brain fog and can't concentrate and arthritis. I need a job with high hourly rate so don't have to do too many hours [ yes I know everyone would like that ill or not] the only thing I can think of is dog walking 1 hour a day but if I need time off I would lose any clients. I have no work qualifications just life experience. any suggestions?? I used to do retail and post office work but also have a weak immune system and can catch every germ going. I feel my best option is something with animals, less human germs and they don't care about my noisy ostomy bag. there are no animal paid jobs in my area so self employed seems best I just don't know what. dog grooming seemed an option but so expensive to train and buy equipment plus I have no where to do it and renting space just to do a couple of hours a day wouldn't bring me any profit. minimum wage is not an option as I couldn't do enough hours. What job can I do?

[happytulip]

Do you not think that you have been put in the support group for good reason?

It sounds to me like it would be a colossal effort to return to work.

How would you manage?

Why not wait until universal credit cones out? I dont know much about universal credit, but if you have been deemed to be too unwell to work and are in the support group for ESA, if nothing with your health has improved, why would UC suddenly say you can work. Its a benefit but with a different name. Your health hasnt changed, just the name of the benefit.

Working might even make your health worse.

[suzannah16 in reply to happytulip]

I know you're right but I hear about so many people with really bad health problems losing their benefits that feel anxious and stressed that I may lose mine too. guess it's the lupus anxiety that's getting to me. I just feel stressed because I worry all the time and then I feel worse. plus my head tells me I could work a couple of hours right before my body says no and makes me nap. I just hate feeling useless. perhaps I could get a job working for some researcher studying sleep

[happytulip in reply to suzannah16]

Firstly, you're not useless, you are ill. There is a difference. If you were perfectly able bodied and in good health and not working, then you could have an argument for calling yourself useless.. But as we've already established, that isn't the case.

Secondly, I totally get your anxiety about some evil ESA assessor, dressed in a black cape swooping down and judging you and with a long pointed finger telling you to go back to work and never take a lunch break!! See, I get that nightmare too.

Even though I tried 3 times to get back to work, all treatments have failed so far, I have more diagnoses now than when I was first assessed and I have 9, yes 9 consultants put me forward for medical retirement. And I'm medically retired....I still worry that my benefits will be cut. The stress hardly helps the symptoms right!

What I would advise is keeping hold of all your medical paperwork so it can be produced at a moments notice. Its the only way to back up a claim and that is what they make their decision on, medical expert evidence. I'd suggest focussing on you right now and try to stop being anxious, lupus plays some nasty tricks!

If they do try to alter your benefit then cross that bridge when you come to it with the medical evidence that you have.

My understanding is that you have to be taken out of the support group before you can be eligible for UC, or that's what the government website indicated, but you still might be in receipt of some other benefits that might involve changing to UC eventually.

[suzannah16 in reply to happytulip]

medical evidence is one thing do not have, none of my consultants have ever given me anything in writing and I am unable to access my medical records. even when they say they are going to phone me about test results they don't and it is use less going to my GP for test results as they claim they don't always understand them. I've found when I have a benefit assessment it is only based on one of my health problems and they seem to disregard the others rather than take it as a whole. also as I didn't appeal my last one I didn't get to see their copy of what part of my illnesses they based my benefit claim on. I only have seen that in the past when I appealed. so if I have got into the support group because of my colitis maybe I now don't qualify as I had surgery to get an ileostomy. I did tell them about this and it was added to my notes I just don't know how it would affect future claims.

[happytulip in reply to suzannah16]

Phone your consultants secretaries and you can ask for access to your clinic letters.

[Joy_1]

Hi

What about a wee bit of voluntary work to begin with. That way no pressure.

Joy