Woke up this morning in incredible pain... my hip and lower leg pain woke me from my sleep. Realising my bladder was full to bursting point i had to get out of bed and hobble down stairs to the only toilet in the house.. I sat on the toilet in tears with the pain, both the dogs looking at me with sad faces..... this is the third day my pain has been unbearable... I feel a little depressed and uncertain about the future even more than usual.
I suffer with chronic pain in my right leg and I am currently on high pain medication which does not always ease my pain. I have recently had my DLA withdrawn as they say I can walk 200metres with my crutches, although they miss the point I made at the assessment that I am unable to use my crutches due to my wrist dislocating and experiencing further pain in my wrists. I am not a small person as I have put on about 4-5 stone over the last 5-6 years since my mobility has been getting worse.... and in 2009 i had high rate DLA indefinitely as my muscles in my leg stopped working and my pain levels where high, I have seen speacialists at all the local area and at the private Bupa hospital... I have spent over £1500 on private physio as the NHS teams just want to put me on a bike and a ball which aggrevates my leg and pain when all i need is someone to manipulate the muscle to keep it from going tight. anyway back to where I was... My car was due to be collected on friday but they did not call me before I had to go work, so I still have him until prob tuesday the chap reckoned when I called them late on friday... so I managed to get into work on Saturday...
In two years how can a person go from high rate mobility to zero, nothing, even though my situation has not changed, my condition has got worse, and on the letter they sent to advise me states although my walking is limited!! i still get nothing... where is the common sense?
I have managed to purchase a car, but the insurers don't recognise the DLA scheme and therefore I have lost all my no claims discount (9 years) plus the 2 years while I have been on DLA.... so I have to start again... so for a cheap £600 car my insurance is nearly £2K for me and my partner.... not only have I lost my DLA, I have lost the £250 payment you get back when you return a car in excellent condition on the scheme, I paid a deposit when I got the car... I will also get penalised by the insurance companies when I get a new insurance policy... I can't get to work without a car I can not walk 200 metres normally (or even with crutches as it is stated on the letter they sent). although would be nice to see someone walk normally with crutches...
I understand the benefits system needs a shake up - but I believe Cameron is not making the best decisions. What is the cost of all the appeals? with 70% being over turned at appeal stage... Are we really saving money or it is just a paper exercise.. What about those on DLA who get the cars and let their family use it rather than the person who is disabled? What about those who when they get called into assessments come off their pain medication so they are worse on that day than what they would be on their pain medication? Then those who blag the whole benefit system not just the disability system - fraud in the disability benefits is 0.05% what is it in unemployment? TAX evasion ? Are the people we voted for really making savings or wasting more of our money!!!
Having the DLA meant I could keep working and paying tax.. I was not living life of luxury I earn £12,500 per year... a meal from Mark and Spencer's once in a while is as luxury as it gets. If I don't get a car and run one I will have to give up work.... I am fighting to keep working, and my sanity.... I will have to ask friends to get me to work for the next few months as my insurance premiums are to high I cant afford to pay it yet not even the deposit, let alone £200+ a month. The whole problem is depressing.. I used to pay £300 a year..
If i was not disabled I would walk to work, but there lies the problem - I CAN'T- its not that I don't want to. its I cant.. I can not walk and function as the pain is to much.. Even now my head is foggy, thinking is more difficult as my medication gets higher.. Memory is shocking.. my partner jokes about me suffering with alzheimer's previously it was funny but now it just causes more frustration as i notice things more, I go to the kitchen not knowing why i am there... I can't win.. if I don't take my medication I cant think or do anything as the pain just makes me cry and want to stay in bed not moving.. if I put the patch on it helps with the pain but I struggle to get up I feel dopey half a sleep. I struggle to work and hit my targets, but I do it.. because I want to survive its my determination.. half asleep / half of me is better than being in chronic pain.
I owe lots to my partner and my friends... they have been great and I am sure they will support me all they way. My GP has already said she will write a letter for me.. CAB although I cant get there help as I don't qualify for legal aid they have given some advice and now I am seeing someone from Manchester Adult Services as they may be able to help with my appeal. after that I guess I will have to get legal representation myself.
When I went to the assessment I brought all my medical files letters scan reports etc all the credible medical evidence - the Doctor did not even look at these (2 files worth) all the Bupa receipts where I have paid for my own care to keep me mobile, (now I have a friend who is a physio therapist and my partner has been taught how to manipulate the muscles daily),
I am frustrated, depressed and worried about existing.. I like my job its not much... but I get out of my house and meet people talk and interact with people... that's what keeps people sane. The support the govenment gave me helped me to contine to work... this has been withdrawn... my appeal will take 8-9 months...
Today is a day i just want to curl up and sleep.. I am exhausted tired, worn out... I worry about lack of contact with people and the outside world if i cant get the car insured cheaper... My world will shrink.. I have had depression before and its really hard to get out of a rut... but so easy to get in one.. I have noticed i get mood swings on t day 5 to day 7 on my patch, I can only think its due to experiencing more pain on those days as the patch ware's off - I need to ask my GP.. I just don't like bugging her. I have not got out much since I had the letter stating my DLA is being withdrawn, I feel completely let down by the system.. I will have to rely on others...
I have had a couple of falls in the bath and had my partner not been there, I wonder how long it would have taken me to get out the bath?? I am sure I would have been freezing and wet for a while.. which would then lead to a cold.. etc.. what if i had injured myself I could be waiting hours before I could get help and the benefit decidors dont realise some people dont need daily help in doing things, but as I do slip trip and fall often I chose not to have a bath or go out without being with someone that way i know i limit the amount of harm injury i will do to myself.. i dont fancy being cold half in a bath and half on the floor for hours while waiting for someone to help me or waiting for me to regain conscious should i bang my head ( which i feel is significant damage to myself).
I know its only pains in my leg, I am not dying..... but imagine living with constant tooth ache and everytime you move or even lay still your in pain...imagine walking up in pain going to sleep in pain... I am human I want to work I want to do normal things people take for granted!!!
Sorry for the rant - I am so frustrated.....
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