ESA Appeal - dreading it
Posted , 6 users are following.
Hi, I have been fighting the benefits system for two years now. In 2014 I had to give up my job as every joint in my body was in agony. I was shortly thereafter diagnosed with Joint Hypermobility Syndrome. I went on ESA but failed the medical (0 points). I was completely dismayed but just accepted the decision and went onto JSA. However I was obviously struggling and was advised to go back on the ESA again. However I failed that medical too and the mandatory reconsideration (in which I listed EVERY symptom I had and pointed out that I rely heavily on other people's help) 
. To say I was in despair is an understatement. I sobbed for about an hour after the letter arrived and that night counted out all my co-codamol (37 tablets!) and drank 3/4 litre of baileys. I kept picking up some of the pills and crying. (I have two children btw). In the morning I was scared of how much I had wanted to take them so I threw the pills in the bin and haven't asked for any more.
Yesterday I was FINALLY diagnosed with fibromyalgia (by a rheumatologist). I think this is what I have has all along as she said the hypermobility was minimal. I am basically functioning at 5 to 10% of 'normal'. I am completely exhausted and sleep lots during the day. If I take my dog for a walk it knocks me out, and it's likely I'm not able to do it the next day. I have constant pains and very often find insignificant things like turning a tap difficult. The house is a MESS. SO, why do they keep telling me I am fit for work, when some days I don't even brush my teeth, let alone shower!!!
I am DREADING the tribunal. It's only a month away. I don't know what I will do if it goes badly for me. I have an appointment tomorrow with Citizens Advice to start making my 'case', but I am so terrified.
Sorry, that was a bit long. Just needed to get it out!
0 likes, 14 replies
mandy72855 mari34228
Posted
Hi Mari,
Ya it is crap this DWP system. I've been there, I went sick in work onin February 2015, got diagnosis of fibromyalgia in may by rheumatologist and CFS/ME in august all in 2015. My pay went down to half pay so instructed to go on ESA, I did. I had an assessment and got put into work group for 365 days
In that meantime,half way through that work, bearing in mind I worked as a Clinical support worker , supporting adults with learning disabilities in the NHS, I actually got finished up due to incapability, although pension scheme turned me down for my pension. When my 365days were up I also lost my ESA. So left me with no income whatsoever. That's the NHS for you and our bad welfare system. I like you have felt like it's not worth being here anymore but I to have 3 lovely boys and a husband. I've got someone from CAB working on it on my behalf too. It's just so hard to carry on. Sorry I wasn'uch help to you, needed to get this off my chest
X
mari34228 mandy72855
Posted
Hi Mandy, don't worry I'm also needing to have a good rant at the moment. It's either that or cry
That's an awful thing you have been through. The system is a complete farce. I really hope the CAB can help you. I feel like I have been lumped in with the 'won't works' rather than the 'can't work' and that makes everything even more awful as it makes me feel like I am a liar and a fraud.
Best wishes to you, hope everything works out. xxx
Rubyjack mandy72855
Posted
Hi sorry to hear what you've been through hope you get sorted xxx
jeanne81532 mari34228
Posted
I'm so sorry to hear your (and Mandy's) tale of woe. I don't know if it depends where you live in the uk, I know a friend in Stoke had the same problems, while I had the ESA medical in Brighton, and was put straight into the support group. I have fibro and used to be a nurse, but gradually became less and less able, and had to give up my registration. Oh I've just remembered, my ex-husband's new wife also has fibro, and was turned down for ESA in Scotland.
I can't give you any advice really, other than to say: try to stay strong, worry is a bad thing for fibro, so try not to do it; it won't change anything. Also, in my experience, things often turn out not to be as bad as you thought.
I wish you (and Mandy) well. Gentle hugs xx
mandy72855 jeanne81532
Posted
Thanks Jeanne
I'm from Wallasey in Merseyside. I do try to stay calm as much as I can. It does appear from the information I've had over the last couple of years, that this fibromyalgia does seem to get people who have been very active in their job and home, my councillor says "the doers" . This seems to be quite true
mari34228 jeanne81532
Posted
Hi Jeanne, that's interesting what you say. I'm in Scotland and the CAB told me they have had a huge amount of people who have come to them after being refused ESA. I'm afraid not worrying is a bit hard for me! My divorce (after a horrid marriage to a narcissit) was finalised last March and my two children both have problems themselves and are in counselling! Home life is not always very easy. That's part of my problem I think. I'm so tired of battling on, I think my body and my brain have had enough! I fianlly ground to a complete halt quite a number of months ago and just can't seem to get going again.
Sorry, I'm moaning. Can't stop ranting just now!
XXX
Morag_0100 jeanne81532
Posted
Well it's disgusting to think it's where you live in the country and going through appeals etc w s a etc is debilitating oh by the way do they realise the drugs people have to cope with also debilitating no care really it's only a job to them making a decision on someone's outcome of finances through being ill I don't wish to be ill but like lots people that's life
Rubyjack mari34228
Posted
Your not moaning I understand how you feel fibromyalgia doesn't seem to have any respect as an illness because you can't see it I feel like some Dr are thinking you're making it up when you try and explain the many symptoms of this awful disease xxxx
mari34228 Rubyjack
Posted
Thanks Ruby, I need to offload somewhere. Even my own family don't get it. My parent's are 70 and 72 and are able to do more and have better social lives than me. (I have no social life!...no life at all). I'm tired of trying to make them understand just how awful and exhausted I feel. I don't think they can fathom how I can possibly be in a worse state than them when I don't 'look' unwell and I'm 'only'
41. I don't think they get how completely soul destroying it is to have absolutely no life when I am still relatively young! I sometimes feel like they think I am not bothered and am choosing to just shut myself away and do nothing. I feel so angry sometimes and just want to shout and scream and have a complete tantrum! And yes that's the same for me with GP's. I was regularly seeing two at my surgery and kept being told my symptoms were due to depression. I finally saw a different Doc who really listened and said the miraculous words 'I think you need a proper diagnosis'...I nearly fell off my chair!
And friends can't work it out either.Even though I have one really good one who tries, I know she still doesn't completely understand. I feel very lonely much of the time.
However, I know it's not just me! I'd say 'thankfully' but I wouldn't wish anyone to feel like this.
Best wishes and love to all of you who are dealing with this horrible illness. xxxxxxxxx
Rubyjack mari34228
Posted
I wake up in the morning and think I'll do this and that today get out of bed to go to the bathroom and feel like ive done a full days work and so sick other people can't understand you can't blame them we look ok and I've had people say oh I'd like to stay in bed all day I wish I could get out keep talking to us on here we know how you feel there's a site I use for advice re forms etc called benifits and work wish all the best for you xxx
mari34228 Rubyjack
Posted
I made a wry smile when I read that just now! Ah...plans! I showed the CAB guy a couple of pics yesterday of my kitchen to try and help him understand my situation. He intially didn't quite get why I was showing him them. My point was that it was DIRE. Worse than any student kitchen you could imagine
And I pointed out to him that the rest of the rooms were just as bad. WHY would I choose to live like this??? I ended up in floods of tears. My back is an utter mess and the thought of bending down to the bin and empyting it so I can re-fill it with the accumulated rubbish is just too much. I can't stand at the sink to do dishes. I find it exhausting try to sort through laundry, and even if it is washed and dried it just piles up and up as I don't have the energy to put it away. And yes, I feel like punching the people who envy me???? What???? Or who complain about being tired. Which is unfair I know, but when they say oh yeah, I'm feeling really tired too...then proceed to tell me about their plans for the evening or weekend or whatever 
Rant rant rant........
Libby42 mari34228
Posted
Hi Mari, I am so sorry to hear about your illness plus your terrible experiences with "the system".
There are a couple of excellent sites for you to look at, where loads of advice on wading through the benefits system are explained.
The Facebook site is...M. E and other chronic illnesses benefit advice group. I can't find the other site at mo but will have a look through my e mails.
Armed with lots of helpful info and support, I do hope that you will feel able to take on the fight. Very best of luck.
Rubyjack mari34228
Posted
I know how you feel there is a good website benifits and work gives great advice including tribunals I know how you feel I am just starting my pip form dreading the assessment there are some good honest assesors out there with luck we'll both get on ok my very best wishes to you xx
trisha87499 mari34228
Posted