So tomorrow I have an appointment to see the local MP. I sent a very informative email on Tuesday (regarding my ESA being stopped), just trying to explain what it's like living with fatigue daily and struggling to do things. I know a few of you have asked for help in this way and got some, I'm just not entirely sure what kind of help I'm asking for!
I went into some detail of what everyday living is like for me and how I can only work 6 hours a week and that I wouldn't know what to do if I had to go to tribunal.. and lost. I know a lot of other people are in the same situation.
Can 1 letter from little old me really have that much of an impact though?
I'm not really sure what the whole appeal process involves yet but I have an appointment with CAB right before hand to go over this and to help me write it out.
Just so sick of it already :/
Written by
teecayc
To view profiles and participate in discussions please or .
I think most people on here, know what you are saying. We are all going through this or something similar, it is awful that it is so hard to get anwhere with benefits etc. Good luck
hi good luck you have just given me an idea about going to see your local mp i didnt realise you could have an appontment to see them i was misdiagnosed of epilepsy wen in my late teens early 20s after fainting a couple of times i was started on meds and i started fitting everyday in the end i was having 20 to 30 fits daily and taking 15 anticonvulsants a day this went on for ten years in 1990 i wa told i was epileptic it was the meds caused the seizures i had had and they stopped all drugs i couple of weeks later i was diagnosed with lupus there is a chance the drugs caused this but i will never know all i know is before this happened i was a very healthy girl who loved life and was very active i have had lupus now fo 20 years and in the last 5 month have been diaganosed with srojens disease and fibromyalgia as well , i dont have any family as i was told not to have childen by the nhs as i was an uncontrollable epileptic not having children is something that really hurts me as i would of loved a famly of my own , i cant have children now as im 52 and dont have very good health i fought a med neg case for nine years but i didnt get anywhre as my records went missing from four hospitals not long ago i wrote to david cameron to see if he could help me but wen i got the letter back it was too late for anything to be done as there ae time limits on everything in this bloody country one day i will get justice im thinking of writing a book , but i may just contact my mp to have a one to one appointment with them . anyway let me know how you go on . good luck
Hi, thank you! Nine years is an awfully long time to be fighting something like that.. And then for that to happen!
Well it didn't go bad I suppose but I don't really think he got the grasp of the point I was trying to make.. How we can go along and touch our toes.. And how it doesn't show what we struggle with! I don't think he remembered the letter, it was more his assistant. I suppose it's not all bad as he did say that he could write a letter but that I would have to be going through with the appeal first. So that's sent off now and I have an appointment with a benefit welfare officer soon so maybe that will help.
(yes,time limits! I lost out on 6 months worth of money as I was too late claiming for back to work credit.. But only because my times were different to their time.. Nobody thought to tell me. After countless phone calls and nobody knowing what was going on it turned out that I could claim again. I think that this is actually my third time now not second).
Good luck if you decide to see your MP! It might turn out in your favour next time round.
Masses of Luck to you! This ESA lark is a nightmare - know how you feel. Good on you that you have spoken to your MP and are getting advise from the CAB. Might have to do the same myself - have yet to hear back from them. Fingers crossed for you.
All the best of luck to you. Stay calm and just be very firm and clear about what you are going through. I won the ESA appeal a month ago and now have to explain why I required a taxi there and back - despite the reason for the relevant points being awarded make this perfectly obvious.
Thank you. And well done! I think it's just the thought of being up there on the spot. Usually if I open up and explain I get upset so that's what they'll be getting lol.
Unco-ordinated.. You could say that couldn't you :/
i am going through the same thing. i was thinking of going to see mine. they take ESA from you ,and you try and get help but know one whats to know as you'r still at work. They think you'r just skiving off.
Also i'm on over 20 meds and i want to know why we have to pay for these, the gov should look into this. If i come off it ( like many of us) we would end up in hosp.
Well I went along and basically he said that they couldn't do anything until they had actually said no a final time.. So I'm just waiting for the answer after sending all my bits of information/evidence in. He would be able to send a letter in supporting me. Luckily it was decided that they had underpaid me and I now have the money from when I went without.. And are paying me the appeal rate. It's Definately not right. I'm sure if they were n this situation they'd have something to say about it straight away!
There clamping dwn loads on it' all I was currently on esa, not for my lupus tho was told I had rhumatiod arthritis bout 15 yrs ago then a yr later they told me I had lupus, I get bad rashes up my arms and face in the summer, bad arthritis in winter, I also had my spleen removed because of my lupus as at the time they fort id got lukimer (can't spell sorry) turns out I had no white cells my body attacks the good cells , so they took my spleen out, I was ok but U on constant pencilling for the rest of my life, if I get ill have to have extra pencillin but since I had pneumonia 2yrs ago not been well since had it for 4mths and now I can't breath they say there sumut wrong and I get extremely tired all the time so I fort id appeal being trying to get DLA for bout 10yrs and still nothing but they have stopped my claim and I went to a medical and they said im well enuff for wrk when I no im not , im going hospital most weeks this day and age U got to look physical disabled to get it which is wrong they never ask me once to prove these conditions stupid stupid stupid
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
x
Feeling low:(
Can't seem to quite get my Lupus under control. 
Does anyone get the malar/butterfly rash anywhere other than cheeks and nose?
Blue Badge Assessment - What do I do????
Questions about Work
