Me ...moaning again

[elodielupus2]

Hello

Firstly thank you so much for people who replied to my previous blog, im sorry I didn't reply but ij haven't been using the computer much

Im trying to find out who else receive high rate dla on both components? I've been recdiving high rate for 2 years, im in a wheelchair and my husband had to give up his really good job in London to look after me for 18 months , he has now gone back to work and we have a careor 7 hours a day , yet I don't feel its enough because I have to look after 2 kids under 4 years old completely on my own in a town house for another 3 to 4 hiurs until husband gets home .social services pay half of the care cost but it leaves us another £450 to pay which is an enormous amount for us , how do you cope with dla and just ne wage ? I've recently been made redundant from my job for the reason that ij am sick , surely its not legal , im not tired , I'll and busy to fight it

Please tell me things could improve , I've been on pain killers everyday for the last 18 months k the, steroids didn't work for me , plaquenil and immuno suppressant drugs seems to work a little bit but not enough for me to be pain free ....

Sorry for the funny writing but im typing from a tablet as i cnt do it from a normal laptop as my fingers are too painful tonight

Sorry rant over

[Acorn1]

You're not moaning, it sounds like you're having a really tough time. It's such hard work being a mum at the best of times let alone with an illness. I don't have DLA as I'm managing to hold my job down at the moment. I am however selling my house and moving me and my kids to my mums village in preparation for the future, Lupus getting worse and i don't want the kids to suffer. I guess eventually I'll need DLA. I don't know what to tell you except keep taking the meds and get through everyday the best you can. Soon your kids will be at school full time which really helps, mine are 5 and 6 now and it's such a relief to have time to sleep during the day. Keep strong, you're not alone.

xx

[Kentish_Man]

You are not ranting. it is just you 'letting off steam' caused by your frustration. I too receive the higher rate DLA and I have been told that I will never be able to work again due to my Lupus (Polyarteritis Nodosa). I am not in a wheelchair - yet - and have a car under Motability. I am 6 feet 5 inches tall and, due to the high level of steroids that I am on, have put on quite a bit of weight. I now learn that I will not be able to get a large sized car any more under Motability due to people having abused the system and I will probably have my benefits cut.

I also live on painkillers (Morphine mainly) and do not have what I would call a high Quality of Life.

I was sacked from my job for not working my contracted hours !!

Things will improve. At times along the way it will seem a little desperate, but just remember that at least you have all your limbs, your sight, hearing etc.

I have had Lupus for 6 years now and I am adapting - slowly - to my new way of live. I do not like it (and am still in denial of what I have and where I am in life) but I have a very positive outlook on life and I think that helps. One important thing, DO NOT GIVE IN to your Lupus, to give in is to give up. But you must take regular rest breaks.

It is a bit rambling, but I hope that helps you.

[faeryfey]

great words Kentish_Man! Loads of people usually get the esa or dla after appealing. ATOS are a stupid farce. And DLA is non means tested so you can earn money or have millions of pounds, and still entiteled to dla.