Hi all I do get DLA and yes it took a long time, and many appeals.
I too have SLE, discord lupus, lichen planus of the mouth and spinal problems to mention a few but the first bit of advise I was given and pass on to all is DO NOT tell them about good days, remember every day is a bad day, also not what you can do but what you can't do, if you have a partner get them to write how much they need to do to help you, and how much you can't do yourself and need help with ie bathing without help, dressing, moving around in the house because of pain in feet leg's spine ie I can't put socks on, or shoes that aren't slip ons.And I can't go out without help. Please do not let pride get in the way of being honest. I hope this helps some and good luck to all. xx
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Minimum
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Hi all, just to say i to eventually got DLA after 3 and a half years of trying i went to place about benefit support who helped me fill in the forms and also told me to always state how you are at your worst and what help and support you need at these times never when you are having a good day which seems to have made all the difference to my claim, although i havent had a review since they have started the shake up and im dreading it and feafull i will lose it as i dont know what i would do. So fingers crossed for all those who genuinely need it x
Hi Lizzy, Yes that is what I was told to and I feel that made all the difference to. I also wonder how the changes could affect me but try not to worry as 1. it won't help and 2 worrying can make me so much worse. So fingers crossed to for all of us that need it to. xx
Hi Minimum, glad you got your DLA, I haven't as yet applied, at what stage do you advise starting the process ? or do you have to reach a certain point before you do ? from reading other blogs / questions, on here I seem not to be to bad ( as yet) , I have daily aches, which are not to bad with other really bad flare ups days, but on the whole okish
Hi Lupydraon, (love your name ) I think your right it is difficult to decide as to when,
How are you walking out side do you need help?? blue badge?
I got mobility before I got the care component.part.
Can you make meals for your self on a regular braces??
I don't know what anyone else would say but there is no harm in getting the forms and seeing what it says, and remember what you think is aches and pain's to anyone else it can be agony!! Talk to CAB they really can help and they might have a better idea as to if you would stand a chance now!!! and remember even if you filled it in and they say no it doesn't mean you can't ever try again, I'm not sure how often but CAB will. Good luck and I hope you stay well for as long as possible. minimum x
I so agree with your advice. The first time I applied I thought that showing them that I was trying to do as much as possible would make them realise I am not a fake just someone trying to live as normal as possible- I got turned down.... The second time I applied I took advice and told them how it really is most days and what I cant do - I got an indefinate award so yes peeps DONT let pride stand in your way cos it dont pay!!! I have an indefinate award but am dreading when they change it as we will have to go all through the assessment process again and as I now pay for someone to help me in the morning so I can still go to work I fear the new idiots assessing us are on bonus schemes to try and reduce claims
I'm with you Beems09, I'm pleased you finally got it but so wish nun of us had to need the help. I can no longer work and haven't been able to for a long time and yes they do make you feel unworthy of help, a bit like they say jump and we say how high!!! (I wish I could jump lol lol ;)) I no longer feel guilty for having the benefit because I know I need it.
Name came from having lupus plus nick name indoors has always been dragon but in the friendly way.
Most days I can walk / cook meals and do most things apart from when having a flare up, like I did the other day, when had horendus pain in left wrist, fingers all culred inwards and hand off set at an angle, that lasted fro 18 hourrs, plus other similar flare ups, ( but dont want to wake the sleeping wolves) so at the moment I consider my self quite lucky lets hope it lasts
I know what you mean about not wanting to wake the sleeping wolves, I felt like that for a long time but just getting a form and seeing what they ask won't do any harm, Just one thing I suggest you could do is make a note for your self when your having a bad time and how long it lasts, even if you are lucky as you said it won't hurt just to keep a record and to make sure you keep a note of all Dr's appointments for any ailment as well as the dentist it will help in the long run if/when you applies for help.
Keep happy and enjoy your good days you are aloud to xx
I just wanted to say a 'very well done'. I have SLE, Antiphospholopid Sysndrome, Reynauds, extreme IBS etc etc. I have also been turned lots of times and never had the energy to appeal so in the end I found myself a 30hr job as I couldn't live on the money I was getting. I love my job and also know I am one of the lucky one that can actually work, but just lately I have been poorly one after the other (just had two weeks off with an infection of the liver) and I just wonder how long for I can actually keep this job.
AGAIN a very well done to you and all the best for the future xx
Thank you Elly, Sometimes the list of illness seems never ending doesn't it. I have a kidney infection right now so it's more pills to take I rattle when I walk lol, please remember DLA is awarded even when your working so try and fined the energy one day they will say yes and don't forget to apply for the mobility side of it too, I got that first and it was a great help. Good luck xx
Well done on getting the DLA and for the advice. I wanted to ask if you know if they would take my husband's income into consideration about not awarding DLA? Also we have some savings, would that stop me getting it?
At the moment I only work 2 days a week but have been off work ill since January. Working in education, I have had sickness pay that has now gone down to half pay. If you, or anyone else knows anything I would be interested to hear.
As far as I am aware, DLA is not means tested, so your husband's income and your savings shouldn't be considered. If you were to apply for ESA, I believe that IS means tested.
As Paul said below its not "means tested" I strongly suggest that you/anyone goes to see C.A.B. if your unsure they really should know what you can do even if your working too. xx
Please feel free to privet message me if you want to chat or talk about how your feeling.
applying for dla is bad enough - how do they expect any person with brain impairement fill in those dreadful forms - must be at least 40 pages . in case you dont kno something new is bein brought in next year and have to go through the whole thing over again
last time i got a bad headache and just wanted somebody to slice off the top of my head the pain was that bad. I think its a disgrace to put anyone through that again
They call it being Fair!!!!!!!!!!!!!!!!!!!!!!!!! For who
i had tried for 14 years to get DLA but turned down until last year.....it was one of my good good days when the man came to asses and yes i was given it,long before this i was suffering with pain couldnt walk spent days in bed suffering and was told i was not eligable for DLA it doesnt make sence if i had got this sooner i would not have had to worry so much.that would have eased my pain and isolation.hope all with Lupus get help in this way too.Good luck the government doesnt know enough about Lupus sufferers so they cant understand us or it.sorry for going on but THEY JUST DONT UNDERSTAND.!!!
I agree with you both 'lupop' and 'ellie53', none of what we go through makes sense, I had been trying for years for DVA but I think what helped me in the end was my answers and telling them ALL of the things I can't do and what help I would need. I so hope that when they do understand what Lupus is they let us have the help we so desperately need. Good luck all xx
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but the first bit of advise I was given and pass on to all is DO NOT tell them about good days, remember every day is a bad day, also not what you can do but what you can't do, if you have a partner get them to write how much they need to do to help you, and how much you can't do yourself and need help with ie bathing without help, dressing, moving around in the house because of pain in feet leg's spine ie I can't put socks on, or shoes that aren't slip ons.And I can't go out without help. Please do not let pride get in the way of being honest. I hope this helps some and good luck to all. xx
xx
MY POWERS OF COPING NOW HAVE ALMOST GONE COMPLETELYCAN I GET AN APPOINTMENT AT ST. THOMAS'S BY SELF REFERRAL OR DOES IT HAVE TO BE MY GP?
So sudden. I have been diagnosed with UCTD in Oct and put on Hydrochloroquine. Had to come off it slowly in January as had to stay in Ire.
I feel so at a loss and alone. I have been persevering for the past 2 years trying to get the health system to understand.
DLA update
Severe pain in feet and lower leg at night. Is it restless leg??
