Getting back on your feet and being normal?!*@$£!

It makes me feel ever so slightly stupid when I slow down and suddenly remember I have Lupus. I ignore it but its comes back, I choose to carry on like nothing is wrong that a rash isn't eating up most of my skin on my body and not taking my medication is going to help me? Because obviously in my head I am miss indestructible and can do anything?!...

Finally got a job two months ago it may not be where I want to be it sure is a lot of fun and hard work making shakes all day. Plus its full time for me at 30hrs a week. Though it makes me sick the stomach to say to you all I've been ill 3 times already one with just plain fatigue and achey-ness and second with a summer cold.

I hate those back to work interviews, mine was basically saying I cant do any more hours then I'm doing because they are worried for me. I want to finally move out of my parents pay off debt and be an adult except this Lupus is keeping me from it.

I eat a lot to comfort my self even though I know there's worse off people then me out there I still self pity and loath everything about me atm. ( harsh words I know)

Can it be I am doomed to working less being skint and living with the parents until prince charming whisks me off into sunset?

Meh sounds like a 1950's dream... kinda would make things easier but wheres the fun in that hey? Ultimately I'm always trying to look after my self but i seem to only be able to do one thing at a time or my mind explodes and I go sluggish and so work is my life atm trying to incorporate exercise back in once this cold goes just some light walking to work.

I want to say I'm really really happy right now.. well i'm proud i'm keeping a job but at same time waiting for a negative to happen to take it away from me.

On wards and up wards they say.. for us Lupies and on wards ... on wards... rest .. on wards... rest... rest ... on wards UPWARDS!! ... down wards.

Just ranting I know stuff could be worse.

Love to everyone xx

6 Replies

You have a job - you're trying hard - and you have lupus. Those 3 things in combination are kind of a big deal and you should be patting yourself on the back, not beating yourself up.

Try this:

at the end of every day, add up all the things you have done that you either planned to do, or that you didn't plan, but you're kind of proud of anyway. Don't forget to include the small stuff that "normal" people do without thinking about it (eg: today, I got up, had a shower and dressed myself, I went out to the shop and bought milk; I was kind to the woman next door; I got through a whole day without a nap).

Take a little time to be pleased about the stuff you achieve and ignore all the things on your list you didn't get around to: tomorrow is another day, and that stuff will still be there.


its good to rant . good on you for holding down a job i cant .you should be proud of yourself .lupus is a struggle ups and downs try to keep smiling .x


Can anyone tell me why people find it hard to believe that lupus survivors suffer real pain and experience debilitating conditions. Two years ago I applied to my Local authority for a Blue Badge and was refused. A few weeks ago I applied again and was called in for an assessment on 24.07.

The Occupation Health Therapist took me through a load of walking routines, as a result the following day I could not get out of bed due to the excruciating pain I suffered all over my body, Yesterday I received a letter stating that I will not be offered a Blue Badge as the worker observed me walking without assistance and. my condition is not permanent.

I think they would have liked if I came on two crutches and lied my way through the interview.

I feel so cheated as they have no understanding of the pain and suffering we endure. I am angry as I guess it was my appearance she assessed me on rather than the disability.


thats what happens at these interviews - you need to half kill yourself before going to those assessments and then they tell you - youre not as bad as you think - just cant win


For your rash try a good aloe vera gel. Prescription creams can make lupus symptoms worse.


Thanks everyone :). Yeah the whole benefit thing is such a rubbish thing and unfair. As for the the rash I went to doctors it may not be the Lupus rash its weird but it might be Candida. I hope i can clear it up soon had it for ever!! :/.

But to be honest i am fine just trying to keep together as we all are :). xx


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