Im a newby

Good morning ladies and gentlemen, my names Joe and im new to your wonderful site, ive read with interest your blogs and posts. Ive recently been diagnosed with CFS/M.E. and fibromyalgia, after about 8 years of going back and fro from doctors to rhuematologists, back to doctors, who diagnosed me with everything from fallen arches to psiaritic arthritis. So got fed up in the end, because of the pain and all the time off work ive taken, i went private, and low and behold after paying private was told Fibro/M.E. is it relife i feel or fear, i hadnt even heard of either silent assassin, but since doing some research and reading all your wonderful, helpful and uplifting funny blogs/posts i feel a bit better. Ive now been signed off work for 4 months now, and is now starting to call the various agencys for benefits etc etc, are there any rules i should be following, keep being told different things, fill forms in as if its your worst day, fill in forms on how you feel on the day, last 7 days yadda yadda yadda, so any help off you professionals (because lets face it, your the ones suffering) would be greatly appreciated, i hope ive not bored you all to death. Ill sign off for now but will catch up with you all later, thank you again, think ill have yet another 40 winks, lots of love Joe x x x x

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  • Hi Joe, I volunteer at a disability organisation in the Midlands and we help lots of people fill in the relevant forms. I can say from personal experience that you should fill in the forms as if it were your worst day, this goes for ESA and DLA. With ESA, you will be required to attend a work capability assessment which is carried out by ATOS and if you have seen the Dispatches and Panorama programs, you will know that this is a farce! They will ask you questions which will start with "on a good day"... answer as if it were a bad day as you will probably only have 1 good day in 20 at best. If you answer honestly as I did at my first assessment, you will not score anything and you will be declined! I appealed, but didn't know I should represent myself in tribunal, so the assessment was read and judged on that alone and it was denied. However, getting regular sick notes meant that they paid my ESA, but at the lowest rate until 6 months had passed and I was allowed to claim again. By this time, my condition was worse, probably due to all of the added stress and I had been issued with a wheelchair, walking stick, joint supports etc. Along comes assessment number 2, but because I had a wheelchair now they sent a taxi for me to take me to Worcester (£220 round trip) as my local assessment centre is not wheelchair accessible. This time I was in a bad way which helped and the assessor was much nicer and listened to me, plus I had a copy of the original assessment, so was able to pre-empt her questions and add the ones she missed out. She explained to me that they don't ask the questions outright, they have a chat and AFTER YOU LEAVE they then fill in the report as they see it!!! I am not saying be dishonest, but work on your average day, not the good day as they will ask. 1 good day in 20 should not mean you don't qualify for ESA, you should and be in the work focused group, that way you can get help from them to aid you into a job that you can do, with help. With the DLA, you can fill in the form online - this is not a means tested benefit and you can claim it while on full pay. Again, answer on your average. It asks how far can you walk without pain, your answer truthfully is the lowest as you are in constant pain right? I qualified for high rate mobility and low rate care, the mobility being obvious, but because I cannot prepare a meal for myself, by prepare I mean peel potatoes etc not throwing something in the microwave. Also make sure that you fill in the mental issues as you know as well as I do how the Fibro Fog gets you! The other thing to remember is all of the benefits are changing and will be changed by 2016, so you will probably have to do all this again. :( I hope this is not too confusing, but if you do have trouble, there are organisations such as mine that can help you fill in the forms and if necessary with advocate for you in tribunals etc. you just need to google your area. I hope this helps.

  • thanks alot sparkymark, a great help indeed, now need to get the energy up to start the bloody form filling, will take your advice and google disabled organisations in local manchester area. Its strange thinking of myself as disabled, because its wasnt that long ago when i could walk the dogs for hours on end and then go out shopping,partying, living, anyway thanks again. ill let you know how things go. x

  • Hi Joe as with you I still find it hard to see myself as disabilied, like you I was pretty active,although I am reminded daily off the fact that I am no longer like that, but on the up side I am thankful for the things I can still do. I only joined this sight last week like you read the blogs etc, It is good to have others to chat with that don't think we are moaning but can relate to us hugs xx

  • Hi Joe, welcome to the clan. Im sure you will fit in very well here, encourage when you can and have a good rant when you want. Hugs x

  • Thank you both, ill keep my chins up and my belly tucked in, hugs and chuckles. X x

  • Hello and welcome to our lovely forum Joe! I am pleased you've had a look around and like what you see! You are never alone here, we are all in the same boat with Fibromyalgia and many of us, including me, have CFS/ME as well as other conditions too.

    If you have any concerns, need to moan or just need a shoulder to lean on, or someone to listen, you're in the right place!

    Mark has posted some great info on form filling at the top of this thread for you and info on ESA etc. If you need to know anything, just ask and we'll be only too happy to try to help you.

    Here's some more info on applying for ESA, hope it's helpful to you -

    direct.gov.uk/en/MoneyTaxAn...

  • Hi Joe,

    Welcome to our forum,i have not been here very long but everyone is very helpful.

    We are all in the same boat here and everyone understands our problems.

    You can get some very good advice regarding form filling etc.

    Hope to see you again soon

    Carol X :)

  • Welcome to our little family Joe x

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