Fibromyalgia Action UK
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it is 3.50 am cannot sleep and have not slept for 3 days now

am very tierd but cannot sleep tooo worried about what is going to happen in the next couple of weeks, willl i lose my home. how much of my benefits will i lose, how will i pay my rent, council tax, i don,t use my heating any more, don,t put a light on unless it is to dark to see, don,t eat every day, hungry most of the time, tried to talk to my doctor about how i was feeling,what a waste of time, won,t go to him again.have aasked my oldest son if he and his wife wants to share a house with me, means me giving up my walkin shower and stair lift, but don,t know what else to do,everyone is struggling now. i am totaly fed up with life. i have worked all my life and yet i feel there is no value in staying alive any more.i was looking after my parents and my partners parents and my sister and doing a full time job but had to give it up when i fell ill and could no longer do the job i trained forboth sets of parent have gone now and my sister has carers now, but now i need help, i did have a carer but when i had me medical they stopped my care money and put me on lower disabilty. but i cannot get out of bed without help most mornings if i borther going to bed.waiting to hear about assessment from social services about commode and toilet seat hightner, and a bar to help me get into and out of bed,i won,t hold my breath i understand the problems they have too.

18 Replies

I cant sleep either have you thought about appealing as when i was turned down i got in touch with my MPhe realy help me why have they put you on low dissabilty and how long have you been getting it for love carol


i was high disability till last year and i have had the disability for 5 years i was told i had fibromyoligia and am incontinant and have arthritis, but when i had my medical last year they put me on low disabilty. never appealed it though i could not. i have sent in another form they sent me in december last year, but have heard no more. i don,t know what to do now. i am on esa but have been told that may stop as the goverment has targets and they want as many people off benefits in a given time. i have pads sent to me through district nurse and i am waiting for visit from assessment social worker, but i won,t hold my breath because they are so over worked


I am a social worker for adults. Yes we re grossly overworked but if you need help with washing, dressing, meals, etc, they should hopefully be able to put in a temporary care package until a social worker/community care worker are able to visit. I would also chase up the commode, etc.

Hope this helps.


Hard though it seems, I feel that you need to complain with all your might!

There are funds available, and you are obviously not receiving or claiming everything you are entitled to.

No one needs to go hungry or live without heat and lighting! Your doctor will be less use than a chocolate fireguard in situations like this - it's not his job - so use the experts!

I sympathise more strongly than I can say, but actions speak louder than words, so please contact Citizens Advice Bureau as soon as possible. They are SO helpful, you wouldn't believe, and I am sure they can sort things out for you. They will help to appeal your benefits claim, and to deal with forms.

Click on the link and find your local branch. All their offices are accessible, and they can visit your home if you really are unable to get to them.

It's difficult to do this when you feel low - I know that better than anyone - but don't lie awake all night worrying - let someone else take a bit of the burden away!

Best Wishes

Moffy x


Sorry to tell you this but the CAB is being cut down to the quick and most no longer have the ability to help you fill in the forms at least not without a very long wait. Most now don;t have appeal workers as this budgeting has been cut too. Sorry


LIke Moffy, i urge you to go to CAB, they can do a lot more than one ill person on their own. Does your son know how bad things really are for you at the moment? Is there anyway he and his wife could help, if not financially then practically?

Please keep in touch and let me know how you get on....Charlii xx


I'm so sorry you are having such a rough time at the moment, what you are going through sounds pretty hellish. I think moffy has given you good advice, you do have rights and you can't just get pushed off esa, they have to go through many routes before they can just stop your money like that. (Please correct me if I'm wrong).

You sound very down at the moment, with good cause, and I am sending gentle hugs your way. Foggy x


It's a vicious circle you can't sleep because you are worried , then you worry because you can't sleep, great advice given above. Have you been to your GP and explained all this he may be able to prescribe something for the anxiety and sleeplessness if you are not already on meds for this



3.50 am...worry..thats a low point in the morning. It is worrying fearing about the future. I believe there is strong support for you. Its not just about Cab its about you recognising that you are not prepared to give up...thats why i think you have writtten.. I have just had my eviction niece was evicted last thursday (london) she has OCD. What me and my daughter are going to do...

i dont know...i didn't foresee this. We will all fight its not just about one its about all of us. You have already had adaptions and your home made to accommodate your specific needs.. The human rights act can protect you/us and your MP. Its not easy to think

i see my daughter struggling, we couldn't afford to go to her physio appointment yesterday. This month i will probably cancel all her appointments...but no matter what i believe that we will get through it. Together.


I would have appealed but I know how difficult it can be as I had to appeal in 2005 when my IB was stopped because the guy from Atos who carried out the medical recorded everything as the complete opposite to what I had told him and scored me a big fat zero .on appeal my score was more than the required 15.goto the CAB .they have people who deal with these things'


This goverment and their reforms make my blood boil. They should be made to come and live with us for a week to see how we struggle and worry, but thats not going to fix things in this situation.

I think its great advise from all the comments above, Def speak to family. I know not many are in a position to help with bills, food ect.... But do you know anyone who could advocate for you, family, friend even a neighbour..

Just to ring and speak to the organisations that could start the ball rolling for you and get someone in to asses your money problems. That would be a big help to get the financial side of things on an even keel.

I got speaking to a neighbour about DLA, many years ago now... she had been diagnosed with arthritis and needed a hip replacement, she was only 45 at the time and they refused to do it because she has to lose 3 stone in weight first. She found it hard because she had a lot of dept and really was eating the cheapest food she could afford, no fruit or veg, she had no family to help. I at the time was working full time with 2 kids of my own but her plight hit a nerve with me and First thing I did was ring for her a DLA form, i went round to her house sat with her for 4 hrs and filled it in, I spoke to CAB, we got social services in.

To cut a long story short, within 6 months she had been awarded full DLA, got a transfer to a bungalow, help with removals from neighbours moved in her new place she had money to eat properly, she had money to get help with household chores and because her mood lifted she felt well enough to lose the weight and now lives a better life in her bungalow "with her new hip" lol.

Things can get better its just having the right people to support you.

Takecare lv and i hope you manage to get the help you clearly deserve and need.

XX Shelley


I am so sad to read this post. You have lots of advice her, I do hope you get the help you need x

TC Gentle Hugs X

Rainbow x x


i am so sorry to hear that some one must help you ,i am really sad i do not know what i can do for you ? take care


hi fibro budies,

i have just recentley move into a council property due to our home being repossessed by the bank because of my husbands bankrupcy, i to worried but we went to our local council and they helped us emmensley they recommened an occupational therapist who i didnt wait long for he visited and did an assessment and recommended we needed to be rehouse because of my health advise we neeed a stair lift and a wet room, the council acted quickly we are now in an aapted 3 beroom property close to all local ameinetities(i know we are lucky), i would just like to say don't give up seek help and advice from your local council the y can help as we found out, we have now been in this house 5 weeks it need decorating to our taste and we are living with boxes that havent been unpacked as as we just taking one day at a time as my health isnt good at the moment, my husband is a god send he sorted all this out knowing i wasnt well enough to take on the challenge, i would just like to say don't give up keep chipping away and get some good advice from your local council authority they can help i hope this has helped


There is nothing worse than the feeling of drowning in a mass of hopeless sorrows I had everything stopped becauseni fell thru a hole between esa and pension you have not said how old you are it is criteria here please dont let things overwhelm u

You have raken a difficult step tonight telling soneone you need help the next step hun is to ask for that help it is out there as i have just found out are u on face book ,,,, cybefhugz petal


yes i am on feeling very tiered now. my son came up and he is so goood.i am going to write to disability office and enquire if my son can look to getting care allowance for me and am going to send them a copy of my form i got for my pads and a letter showing that i got from social services asking about a commode and a higher toilet seat and a bar so i can pull my self out of bed as my son cannot get up to see me every day.don,t know if it will be any good,but i can try and i am going to cab in bridgend council offices,maybe they can help me sort my self out.


Let me know how you arewe all care on here like a close family my name on facebook is the same as here and my picture is a red rose please feel free to link with me I laugh a lot and have a crazy norty sense of humour if you dont laugh you cry and I have had enuff of crying hugz


All of you need to read a documents ESA214 June2011...(Descriptor Values) and Revised WCA Handbook MED-ESAAR2011-001

It's hard reading but stick to it . It's the ATOS bible and makes interesting reading......especially this paragraph

Page 25, and I quote,

(A task must also be completed reasonably. If a person can complete a task but suffers significant pain or distress in doing so, they should be considered incapable of the activity.)

as suffers of fybromyaligia are in pain all the time we have to make it clear to all who ask the question...WE ARE IN CONSTANT PAIN.....please look up these documents and read's our only chance to win our battles is to use their own ammunition against them !!!!!


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