Disability Living Allowance

[Angelheart]

Hi
Is there any one in the UK recieveing any kind of disability allowance? I would be really greatful to hear from you or your storys of getting or not getting as the case may be. I spent more than 3 months fighting for it and eventually they came back and said because I can get dressed on my own unaided that I am not entitled. I can get dressed it takes along time but I can I also have 3 kids to dress for school in the morning, does this mean because I say I can that I am penalised. I do however have to get up 2 hours earlier to do all these things.....
any one with any stories would be good I am new to the site and have got the bit between my teeth now.....
Thanksxxxx
michelle

[balla]

hi michelle, I live in the uk and yes its real hard system they have disability it took me months and months to get any help infact i was meant to go in front of the board when i ended up in hospital, being rushed 70 miles away from my home to the nearest nuero surgeon, i was in my local hospital for couple of days when they noticed on my brain scan i had a bleed in my head so surgery was needed, my husband went a head and went to the board in front of doctors thinking he would be sent away as i was unable to attend but to is amazement the doctors agreed to see him with my social worker and they made a discission i was entitled to help and motorbility as i am unable to walk.Can i ask if you have been in front of the appeal board if not you should get someone to go with you like a social worker if you have one or someone from the citizens advice they will help you fight your case,But really speakin i am not saying you are well but i need help dressing and bathing can't cook for myself either.
If you have told them what your like on a good day being able to do these things well this won't help your fight hun,You must tell them your bad days as you know there are more bad days then good if you haven't got it controlled,I am now waiting on further brain surgery to help brainstem problems.
My daughter tried for help also as she has b12 deficancey and raynauds and vascular disease and is constantly tired and lots of pains as her vascular disease is in her legs she went through all i went through but due to her working as an accountant which some people can get disability even if working she went in front of the appeal court and was disallowed .although a disabled person there said reapply as b12 wasn't taken into account she refused and gave up her problems have got far worse but she said she wouldn't as she felt bad and embarressed about going through all that.

Please let me know where your up yo as far as the appeal court ? have you got smeone to back you up hun as doing this alone is real hard. made me ill with worry something you shouldn't have to go through when you feel bad enough with the lupus,Are you able to get about as you may be able to get motorbility even if you don't get care ? The social services in your area will help with wheelchair and safety alarm if your prown to falling while alone.

hope this helps but if you think you should get help keep fighting if your strong enough to.

bye for now sue xxx ((((hugs)))) if anything you want to talk about mail me.

[Angelheart]

Hi Sue
Thanks for your repsonse....The claim did go to appeal but it was rejected I think it was rejected because looking at the notes my consultant gave them well its was rubbish really. i think because I am a positive person it has its disadvantages my consultant says how are you I say fine when I am not but what choices are there. I have now been off work for 3 months and have noticed a real real difference in me so I am going to make another claim and go to my consulatnt on friday for my 3 months check up. with scruffy clothes, i wont wash and I wont wear any make up, it woudl appear that because I look ok that I dont feel in pain 24/7...sorry for the frustration and after reading your situation you obviuosly have things so much harder than me but it frustrates me that I feel I have to fight for everything. I can dress myself, I can go to the toilet unaided, I can walk for a bit, even though my legs give way and my chest feels like i have a tight band around it, I can drive, how the **** are my children supposed to get to school its not walking distance....oh it goes on but i guess I have an up ward struggle it just seems so unfait sometimes, I have never claimed any benefits in my life, have worked all my life, had my own house etc etc...cant be postive all the time I guessxx

[balla]

hi hun, yes i learned the hard way also,i am a posative person and it don't pay not to tell your doctors how you feel,my gp was always saying look why do you always say your fine when you don't look it.I put makeup although little help from my daughter and my husband makes sure i have fashionable clothes on.Although he sometimes gets wrong size lol due to intro steroids i put on quite bit weight from size 8-10 to 12-14 is large for me sometimes a size 16 and have cushing syndrome due to steroids.can i advise you that the doctor at the appeal don't really know what day to day life is like for you without you telling your doctors how you are,I to worked hard untill brain op and tried to beat my illness but i know now i was running myself into the ground and saying nothing to anyone.I lost my license to drive due to my eyes as my brain problem stops me seeing properly i had to tell them as when i look down and back up again i can not focus it's as if i have been out in the sun and gone back in doors takes a while for my site to come back,we also live in middle of no where husband is the driver and its hard on him while trying to work also get daughter to school and also look after me he gets up at 5am to get sorted.Hence i have an alarm which would let social services know if i was in danger and fallen.The care nurse does come 2 times a day.And my son home from college at dinner and when he has free time.You must ask for all you need i know its hard as you sound independant but if you need the help don't just sit back take it hun.
I beleive the appeal is like you beging for help and makes you feel like you shouldn't well the goverment are always saying there is lots of people out there not clameing what they should but makes you wonder why when they make it so hard.
We had money back dated from the appeal as i should have been geting it for a while before,it took me to be in life and death situation for anyone to listen.
My husband shouldn't really work but he likes is job a fireman and at the moment i have enough help...and also gives him some time away from the house.
sorry hun you haven't said if you are married or have help,And did you have backing from anyone at the appeal.Its so hard to go through alone,my daughter tried and failed she never had anyone with her.
I do wish you luck hun and don't give up (((hugs)))
love sue xxx

[Angelheart]

Hiya Sue

I do have a partner yes but he trys his best, I am seeing my consultant tommorrow so I will try my best to get my point across...Fight for your rights and all that..
I think because I look ok ish its harder. I am off work at the moment and darent go and visit work because I look so well its scary and I feel like a fake..Its my own guilt guilt for I dont know what I suppose I always see that theres always someone worse off than me and it feels like giving in to it all
I will fight for it...I will
Thanks so much for your words it means a lot
And hey for all your trouble girl you have a fireman for a husband lucky old you xxxxx

[balla]

hi angel, And that's another thing that makes me annoyed sorry not geting at you hun,but with lupus unless your in a wheelchair people look at you and say WELL YOU LOOK OK.....and you really don't feel it i wrote a poem about my illness here goe's it was put in a book.

Living With Nuerological disease
As I wish from day to day
This silent illness will go away
It takes my legs and my eyes
It destroys my brain and my spine
One way or another it takes my mind.
Pain and misery I do feel
Knowing this illness will not heal
Doctors, Nurses I do see
Steroids injected into me.
I’m sick of everyone saying I look fine
As they don’t understand this world of mine
Living in this living ****
That no one knows the pain I tell.
And as my memory starts to go
Simple tasks I need be shown
Like needing help to cross the road.
Thanks to David, I’m not alone
Because he has a heart of stone
And for him I learn to cope
I know I’ll never give up hope.
This is dedicated to David, as I have a
Neurological and autoimmune disease without his help
I couldn’t cope.

I wrote this a while back and was one way of geting across i don't feel well to other people just because you may look it on the outside.
Good luck on your journey through this....so hard a fight to get what you deserve....
bye for now ((((hugs)))) sue x

[Angelheart]

Thats lovely really lovely you should keep penning stuff down..
I saw the chap today i was ready for a fight and he was totally fine...I told him I had stopped working and that I didnt feel any better or worse than I did 3 years ago but its takenme this long to realise that this is it now for me. He looked quite pleased that I was actually off work, I think maybe in the past he has suggested the idea but my idea was work is thing that keeps me going but sadly that has stopped....Albeit temporarily....So he said dont worry about work I am sure you have enough to keep you at home ..he was kind today. he said he cant offer me anything else as yet because I have no organ failure but he would give me some stuff but he feared the side effects may outweight the good....he asked if I wanted a steroid injection which I refused as its all over pain at the mo....He did also say that i can go into hospital for a steroid drip that will help thru times but only last a few weeks..I said thanks and left, I did my bit, ticked his boxes and now my GP will give me a nother cert for work hopefully. I think I can still get another 3 months sick pay at work and then I shall have to re assess..
I do feel a bit of a fake though I have to say because I look ok and I getthe kids to school everyday on time and they are fed and clothed but thats my own guilt issues that i have to get thru and I will. I do have personal veiws on why I have Lupus but thats another story.....maybe we can chat about that another time, but yor poetry is a big clue.....xxxxxxxxxxxxxxxxx

[Clare.T]

Hi Michelle


he said he cant offer me anything else as yet because I have no organ failure



This isn't positively supportive I am sorry to say, but what he said is probably rubbish, to put it politely. You do NOT have to have organ involvement to use the many meds that are available apart from Prednisone.

Of course they have side effects, but it's part of his job to weigh up with you the pros and cons and give you the choice to try them out at least.

I think it's a good idea to write an account of exactly how your disease is affecting your life. That helps make it more objective. You can record pain levels on a range of 1-10.

It certainly is very hard to be able to admit on the occasion of a consultation, how badly off one is when every single minute of everyday consists of not giving in and struggling against pain and incapacity.

All the best

Hugs

Clare

[Angelheart]

Hi Claire
I went to see him today, I am too tired to talk about it but he has offered me a half day appt to have steroid drip, wow wee, he said maybe I shoudl have it around christmas time as it lasts for a few weeks....quite thoughtful I thought...xx

[balla]

HI ANGEL, i am never given the option when i have my steroid drip as i get told when i need it when i go to the nuerologist he looks in my eyes and see's the swelling on my optic discs...that tells him yes she needs more steroids,i am lots of other medications due to loss of kidney and pain.
Think he has it wrong as you do need medication to let your body cope with what is going on...i have never heard of a doctor saying you don't need any untill organ failure as the medication is meant to stop the lupus geting to far.It does seem a little odd that the medication is given once you have organ failure but still doctors know best.I have steroid injection in my wrist for carpol tunnel and that lasts few months so they help.Your doctor is right as far as steroids causeing other problems but in most cases the risk does out rule the symtoms and affect lupus has on the body without them in my case the intro steroids is stoping me going blind so doctors don't hesitate to give me them i am norm in hospital 5 days as an in patient 5 days drip of methyleprednislone.
I do hope you get your money sorted out, and yes please tell me why you think you have lupus.As i to have personal veiws as far as haveing a blood transfusion in 1986 i know they say lupus cant be caught through blood products but then again,how do doctors know when they don't know what causes this illness.... if they did then a simple cure would be the answer.
And in uk people who had blood transfusions before 1990 can not give blood due to other disease that they think people have due to this and there is no blood test for it and know cure,in the papers they say we are like liveing time bombs won't know if the illness is in our bodies for years this also affects the brain...etc

WELL GOOD LUCK ON YOUR DLA PROBLEMS.
bye for now sue xxx

[Angelheart]

Hi Sue
Thanks for your support and encouragement, I will keep you posted. I do really appreciate all your help
Thanks again
michellexx

[ROSST]

Hi Michelle

Not logged in for whole but reading your situation I could have been writing about myself.

I have Lupus and servere Raynauds which leave me in chronic pain but not all the time. I look fine (most of the time, because I make myself look fine) I don't feel well most of the time but like you I have 2 very young children to take care of and life goes on.

I claimed DLA allowance this summer. I spent 3 months agonising whether to claim at all. Didn't like the stigma attached and also felt like I had finally admitted defeat. I have 'managed' for the last 5 years but pretending finally got too much. I have now been off sick from work for 4 months.

It took me 6 weeks to complete the form ( my hands are the worse affected) and the best advice I can give is to put down your worse case. If you have a really bad day make sure it's noted in the form. If you sometimes have trouble peeling veg tell them it's all the time. IF you can't get your pills out the packets - tell them. I kept a diary for a few weeks to make sure I didn't forget to write anything on the form. You really have to put the worse down - it a depressing read but at least they take you seriously. Pretending your fine won't help.

My GP was fantastic, he supported me and still does but my hospital consultant is another story. He justs thinks that because I look fine on the odd days I see him then I must be fine.

I received the middle rate of DLA (since Aug 06) and am just about getting over they guilt of applying. I too have not been into work and worry in case I bump into someone.

Please apply again - every little helps.

Tracey
Guildford