I haven't had a good night's sleep in 17 years!, on crutches, can't sit for longer than 10 minutes, can't lie in the same position for no more than 20 minutes; I am constantly tired, in constant pain (on enough painkillers to knock an elephant out by the way). i attended an ATOS appointment (b4 I found out about this wonderful community) with someone who could barely speak English and with no medical qualification. To add insult to injury I was placed in the work support group and now have to attend a work focussed interview! I don't mind working if I can be productive and not fall asleep at my desk or in meetings due to sheer exhaustion from the lack of sleep (after all, I continued working for 16 years with the condition - only stopped a year ago when stress and high blood pressure took an unusual interest in my body and life!). Sometimes I feel being 6ft under will be better, but how can I when I have the kindest and most sweetest ever 9year old son there ever was. He gives me loads of hugs and kisses and tells me he loves me all the time. When he grows up, he is going to find the cure for fibro, so watch this space! They have all the letters from the healthcareprofessionals, but what do the professionals know! An English as a second language speaking Administrator is qualified to diagnose according to the DWP! In the words of Victor Meldrew "I DON'T BELIEVE IT!" It must be Friday the 13th!! Yes it is!!!!

Have a good day y'all.

8 Replies

  • Hi I am so sorry you have had such bad news It is not a fair system at all. You should have been assessed by an English speaking medical doctor, I was , dont know how they decide, having said that \i am still waiting for the results of mine. I believe Victor Meldrew actually ssaid," I dont BL--dy beleive it." I could also think of much harsher words that would be unprintable. I understand your depression to as I am feeling the same so pleased that you have you wonderful son in your life. When I am at my worst I carry some small photos of my son, 2 daughters and 4 Grandsons that I have laminated in my pocket. I send you all my best thoughts and send me a message whenever you like. I am on my laptop all the time as I cant do much else! Take good care of yourself. Sue xx

  • Hi there. I am in the same situation as you. I was put in the back to work group. I was forced to go for the work focused interview. I am ashamed to say I blubbed like a baby all the way through it, this woman was barking at me that I must be able to do SOMETHING! what did I do all day? I must go shopping? REALLY? I hate shopping!! I am in constant pain, anything I do causes me to hurt. If I have to rush I vomit. I hurt if I do something, I hurt if I don't. I am now being sent for mental health help. I also thought, not only I would be better off not being her, but my family would be better off too. But then, I have 2 precious gifts, my grandchildren, I actually have 6 but only see two. My grand daughter 4 years old is a true angel, She was sent for me when I was at my worst. The moment she was born I knew she was special. She is the reason I live. I hope you get this mess sorted, I hope mine gets sorted too. Gentle hugs xx

  • I think this proves how important it is to have someone assessing us who has an understanding of our medical conditions and how we need people to know that they are entitled to ask for the assessment to be done by such a person. Bad enough having the assessment in the first place without having a language barrier thrown into the mix!!. Perhaps you should ask for a reassessment due to these circumstances Buffthet, it may be worth a try.

    So lovely to hear how caring your son is, keep fighting for his sake, you must be a great Mum to have brought up such a great boy. Take care, love Angela xx

  • i agree with ange01 what a lovely person you must be to bring up such a caring son........i also have been put in the work group, i have sent yet another letter off my g.p. one of my carer and one off my daughter who is a carer [not to me she lives away.] ive been waiting 3 wks now to see if they change the decision to put me in the surport group.........since it was posted ive had a lettter from the job center to go interveiw on the 25th july. since the letter has come from job center the next morning after no sleep worrying bout it...ive fell twice no feeling in one leg, pain in both ankles and wrists , dare not walk or use my hands , due to sharp pains.choronic lower back pain, migrain and a throut and ear gland infection.....not to mention feeling sick all the time...all this on top of everthing else.......the stress they are puting us through is just not on.....i hope they get fibro and remember all of us.....and i wouldnt wish fibro on anyone but im sick and tired of all the stress and strain there puting us under on top of our illnesses.....hugs to everyone, julie xx

    p.s. i sent it recorded and they have recieved the letter, i rang and asked..

  • hey ladies hope you are all resting , just a bit of input i like you was worrying about this work focused interview , i actually went to 1 today was in 5minutes was asked do have any qualifications? which i do trained as abeauty therapist 4 years ago, is that what type of job im interested in doing? with disbelief n confusion i replied that is what i would loved to be abled to do...... do i live at same at current address and have same contact number and that was it she said it was a one of Intervew to UPDATE OUR RECORDS, and that was it done as inhave said in my other updates waste of time, waste of my spoons xx take care xx gentle hugs has totally exhausted me today x so please try not to worry to much about THE WORK FOCUSSED INTERVIEW, they told me its not about making you go to work just about updating our records xxxxx

  • How lovely to hear about your special little boy,he sounds an absolute joy, we all experience dark thoughts from time to time so don't feel bad about that, i am in absolute dread of applying for some kind of disability benefit i don't think i could handle the stress or the being patronised by someone who simply doesn't understand what it's like to live with a chronic illness everyday,i really hope things change for the better very soon! I work part time there is no way i could work full time i would end up having some kind of break down as i very nearly did a few months ago! Anyway good luck and take care Love Della xxx

  • Have you thought of appealing? Get all the help you can, go to tags, hit benefits and you will eventually get to 'benefits at work' brilliant info, and free for members of this site, and they do a monthly newsletter. I have read that a lot of appeals are won, so its got too be worth a try. take care Cazx

  • Thank you all for your kind words of encouragement. I live an hour at a time these days. If there is a job out there where they have no problem with me faling asleep during working hours, then I'll take it. I stopped working last year cos I was tired of the insults and criticisms from my line manager and Hd of Dept. I reported the issues to the Union and I got 'what do you want us to do' from them! Unbelievable. There were so many things happening that was affecting my health. It was either leave now or stay and you will leave in a box. I chose the 1st. I am so exhausted - what I would give for even 2 hours uninterrupted sleep!

    Caz re appealing; the appeal period has elapsed and I don't handle rejection very well at all. I am on my 3rd attempt at applying for DLA. I have only recently discovered this forum and it helps to know I'm not alone. Things are very tight financially - only receive ESA which goes towards getting my son to and from school, as I don't drive and we live over a mile from his school; and I can't walk so public transport is out. He has suspected Aspergers Syndrome. I have worked all my adult life; never complained just carried on working with my condition. Even as I type this my hands are swollen, clawed and throbbing (carpal tunnel syndrome in both). I have had 4 lots of surgery on them and only have about 25% use which is diminishing very fast. Most days I can barely pick up a spoon to stir a cup of tea. I am asking for help and no one is listening (the powers that be)! I am not asking for the moon and stars, but just enough to make my daily existence a bit bearable.

    Once again, thanks for your words; I am so grateful I found this forum - it makes my days a bit brighter. Hugs to all.

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