Fibromyalgia, raynauds, arthritis, suspected rheumotoid arthritis and depression affects mobility. I have days when I cannot stand or walk. I spend my life in bed with electric blanket on because I am always freezing cold, hands like marble, stiff and in pain. My back spasms and my joints are stiff and often I cannot stand up. There are more days than not that i am in bed curtains shut, hands too frozen to feed myself or keep myself clean.I cannot remember the last meal I had but it was a long time ago. I have no family or support and I am past caring! I carry on out of anger and frustration because of how dla are putting me through this again. I gave up work as a counsellor when things got so bad 5 yrs ago. I had a promising career ahead of me and had to give it up. Dla does not believe me and keep refusing me. I appealed and a judge overturned last decision because panel lied about many things I am supposed to have said. They said I was not a credible witness and that I had lied about how bad I was suffering. They called me a liar when I told them the truth. I asked for transcript of appeal and found that the panel had lied many times.
My second appeal is in 3 weeks. I am scared because I told the truth last time and they did not believe me then.
Phew! Rant over. Now the tears of relief instead of tears of frustration. Grateful to get it off my chest.
I wish you a relaxed, pain free and happy day. x
Written by
louiseelcross
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In the meantime get some statements from friends, relatives, carers and doctors to show how bad you are.
If you haven't got a carer and/or a careplan get on to your GP to refer you to Social Services urgently; all this will be evidence you can photo copy and present at your appeal; don't take "NO" as an answer from anyone because anyone with half a braincell can see you deserve DLA (and all that lovely back pay).
Thanks for hug Julie. My son filmed me one day on my phone. I could not stand or walk but forced myself to get up and used the furniture to get to bathroom. I showed the panel but in the notes of the meeting they claimed they saw a picture of me standing by my table. I also had statement from clinical psychologist that I saw every week, a counsellor, all my children and they still did not believe me. Only my son that took the video knows the extent of my problems and has given up a teenage life to care for me. I dont want him to care for me but know that I could be in serious trouble without him because I genuinly cannot stand or walk.
I am on a mission to try and prevent others from having to go through all this because its been a bit horrendous.
Need to stay positive and know that I will win in the end. Hopefully I can get into a position of teaching these people about the true difficulties people have with these conditions.
With the two yrs backpay they owe I will treat myself to a lovely holiday in the Canary island. Been once and there was a definate lift of all symptoms. One day I will go to live there. Something to look forward to.
Thanks for your great advice Julie. I will gather even more information.
Julie has given some great advise on information and what to do, It you can manage get down on paper your day to day issues, you could write a little something after each hour or 2, this will help you as evidence on the day' but will also help you concentate and describe the pain as your going through it etc, hope this makes sence hugs xx
Thanks Tess. The only thing I have done, or had motivation to do these last few years, is keep a diary. I fear that they think I am making all this up. My niece says because I look shabby chic with my waist long hair, I look attractive! I am complimented at the same time as horrified that how i look is affecting my ability to get help I need especially when to myself I look like death warmed up.
I am tempted to put make up on for the first time in yrs to go to tribunal and see if they write that as reason for refusing me.
Sorry! Still ranting!
Hugs x
Going to go and get last 3 yr diaries before I forget forever that I was going to look at them.
you need a carer tht would help loads.you must be all skin and bone.also i have depression right now and agoraphobia starting again..
you need more help than you are getting.
being lonely wont help you either has it will just drag you further down into depression.
and all i can say is seek proper advice ;like c.a.b or welfare rights.
even some fresh air would lift your spirits right now as well and im not being funny.
You not wrong Sammy. The lonely days not helping my depression. I really do need fresh air and some sun right now. I am sorry that you have depression too. Its a horrible place to be in. I really feel for you and hope that you have a better day today. I have been keeping a journal about my depression and experience with dla. Writing about how I feel has been really helpful so I wrote my life story and published online. I encourage all to write about feelings even if u destroy what you have written cos it helps.
Thanks for reading Sammy. Have yourself a good day. Sending my love.
Hi there WE MUST NOT GIVE UP AS REGARDS DLA.Fibromyalgia is recognised by the DWP.The assessor is not qualified to say who can and who cannot get DLA.There is a petition online called GO Petition to try to get this changed.Your GP will back you and you do have to be persisitant.I really feel for you, this is the appalling state of affairs for many of us.I wish you the very Best of Luck with your next meeting in three weeks.Hang on in there we are all behind you.These illnesses are slowly being recognised by forums and blogs like this one to hi-light it.gentle soft hugs take care of yourself however little.
Hi Petra. Thanks for letting me know about petition and I will be looking at that. I know that I need help and have done for a long time. I did raise my children alone and that was hard because of the pain and disability but my GP was having none of it. Now my children are grown its like my body gave up and I could no longer cope. I know I will never give up with the DLA because I am telling the truth about my difficulties.
I am hoping for understanding and honest panel and I am sure they are there somewhere. I will win in the end because I am determined not to give in.
I know what you are going through although i do get the mobility and dla at middle rate. But at the moment i am struggling with my depression i don't want to leave the house I don't eat I am on my own except for the dog. On the 4th october i have to vacate my property. I was divorced a few years ago and decided to try education for mental reasons the psychiatrist recommended it. I did an access course and completed it then applied for uni but the course i wanted was at a uni 35 miles away I tried it at the time my daughter was a student and i was supporting her as she was young and i claimed student finance filling all forms in correctly i had checked the direct gov website which stated if disabled or single parent could still claim housing and income support as i was both of these i kept my claim as it was. I reached the end of the first semester but then my health was bad and i had to have surgery on my right hand and the travelling was taking its toll and making me ill so stopped the course and restarted after the surgery the following year but again only made it to the christmas. I then moved into my current home and claimed housing never attended uni again but was called in to the housing benefit offices under caution accused of benefit fraud wasn't allowed to enquire what it was about so i wasn't sure what i had done wrong so didn't go to a solicitor as i felt that would make me look guilty of something. My daughter came with me and i was questioned it turned out i had filled in a form wrong at some stage but explained to them that i had not deliberately done anything wrong told them i had written to student finance explaining i didn't want any monies that would affect benefit etc. but they weren't interested in that. I was then told at the end that they would be in touch this was October in January i had letters saying i had been overpaid so had to pay money back so thought fine went to CAB to try and sort out finances just as we were doing that the following day i had papers to appear in court accused of benefit fraud. I have previously attempted suicide 5 times and this nearly sent me over the edge again I was so distraught i have never broken the law in my life CAB gave me a solicitors name who without even looking at any transcripts etc said plead guilty so was given no choice to fight it. When seeing probation officer there was no work they could give me to do as i am unable to do it becauseo f my health so when i was sentenced was given the maximum conditional discharge of 3 years and have to pay the money back which i was willing to do without them taking me to court. I feel so ashamed i am now a criminal and cannot afford to live in this house because they had been deducting money from my housing benefit and incapacity before they even took me to court and this has left me that i cannot afford the rent so have to move which is easier said than done when you have no money to put down as a deposit or pay agents fees. As it stands i will be out on the streets on the 4th October I have debt collectors phoning me and i really can't deal with any of it. The only thing that has stopped me ending my life is what it did to my children the last time. I have 4 grown up children but 2 don't live in my area 1 fell out with his brother and cut me out as well and my daughter now lives with her boyfriend and is quite supportive. But my stress levels are so high at the moment which is causing the fybro to be really bad as i said i can't eat or sleep i don't go out unless i really have to. I have had fybro for about 25 years now along with osteoarthritis in my hips knees and hands have had one knee replacement (privately when i was married) which is useless but the same consultant will do nothing on the NHS even though the knee is loose and keeps dropping me. I just wonder somedays what is the point! So I know what you are going through. So hugs to you and sorry for my rant
What a nightmare! I really feel for you and sounds like you been to hell. There are so many similarities in our experience right down to the dog. Although I have children and would not want to end my life like my mother did and make my children suffer although I have attempted to before now out of desperation. Its my dog that has kept me going really and now she coming to the end of her life and is struggling a bit.
Its terrible the way benefit agency and housing have treated you. Terrible that they have put you through all this suffering. I feel like going to your benefit agency and giving them a piece of my mind! Especially with you being so ill and that.
I understand the not sleeping and eating or going out as I am the same. I have only been as bad as i am health wise since dla stopped my benefit over two yrs ago. Since then I have got into debt because i am too ill to work and benefits were cut when my dla stopped. The benefit agency was claiming that I had money in the bank when I had no money. No wonder I got as ill as I did because the stress levels were unbearable. I was constantly suicidal. Then I got mad! I am not taking it from them telling me that I have no real difficulties. I cant walk on many days cos arthritis in back and legs as well as everything else. I managed to sit through college and uni although I struggled terribly and cried every single day so that I could work one way or another. I did not do all that to sit at home, in bed, freezing, in pain without support.
I will fight dla until I get them to understand what people like us go through as we struggle to survive life. When I have won my fight I will move to a warmer climate and I will find a way of making my counseling qualifications work for me to allow me to live and work in a better environment. I will find ways of helping others in situations like ours to find something that can make them happy too.
The council have people who have a heart so it might be worth putting a letter together and letting them know the situation you have found yourself in. When my tenancy in rented acc. came to a end I was desperate. council would not help or put me in emergency accommodation unless I got rid of my dog and that was not going to happen. With no money for deposit or to live on I wrote a letter to council and they contacted me within days and put me in touch with a organisation, Face to Face, who paid my deposit and helped me move into a perfect little flat where i was able to rest and focus on getting dla sorted.
I know it cant be easy for you and probably very difficult putting effort into writing letters or contacting people put if you can contact someone connected to council to help you, they will sort things out for you.
I really hope you come back and let me know how you go on.
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