The Whys, the Hows, the Therefores ...

I've been asked why I've given up. There are a couple or so of answers to it all, like with most things I suppose. The short one is that I am tired, worn out, right through to the bone. There is no joy in living anymore, no spontaneity, no hope. Possibly worse is the fact that there is no sense of purpose or meaning to any of it. But the very worst without a doubt is the utter lack of control, the dis-empowerment and the constant requirement to justify your very existence.

I am disabled. It isn't a condition I particularly aspired to. I didn't elect to become a cripple. I didn't wake up one morning and decide that actually it might be quite fun not to walk anymore. It happened to me gradually and over a number of years. At first it was just the occasional cramping of the leg muscles, the pins and needles, the creeping numbness. The waking up from the middle of a deep sleep with red hot flames of agony. And you carry on taking kids to school, walking the dog and going to work.

And gradually, the occasional cramping and pins and needles and red hot flames waking you up becomes more and more frequent and eventually, you spend more time in pain and it takes you longer and longer to walk to the shops. And before you know it, you spend more time resting between steps then you spend stepping between rests and your entire life is now centered not on where you are going but how you are going to get there.

 My ex had walked out just before my youngest was born. My children were 27, 18 and 17 years of age when I was finally diagnosed. They were all either already living their own lives or well on the way to doing so. That was a relief actually. The only ones directly affected by my increased impairment and crippledom were the cats, the dog and I. The animals couldn't care less if some days I did not have the energy to dress myself.

The dog was elderly and quite happy to just wander about the back garden on the odd days I couldn't walk her. She was sedate enough to amble beside the mobility scooter on the days we did manage to get out. As long as my weak right arm did not mean that I couldn't open a tin ... and with an electric tin opener that didn't happen ... they were all happy to sleep when I did, awake when I was and adjust to a new way of life.

Which was just as well as little did I realise that the reality of living with an impairment was going to take that much of an effort. Everything had to be fought for. I was used to fighting, I'd been a single parent for most of my life. During the Thatcher years I'd fought for my right to work. During the Blair years I was actually £40.00 a week worse off working then I would have been had I elected to stay on benefits.  I'd spent years working in deprived neighbourhoods as a community development worker and a community activist. But nothing prepared me for the fight I now faced as a disabled single individual in my fifties.

Brave New World!

I've had to cut back on help as I have to buy it all in. Of course I couldn't do it overnight as by law I am required to give notice. But at least I have not had to pay any outside help for the past 3 weeks.
It is a relief in some ways as it is one bill I will not have to worry about anymore. On the other hand, the lack of help has had a rather inevitable consequence.

I can't do everything that needs doing for myself. So I've started the 'avoid making a mess' strategy. I no longer sit in the front room. If I stick to only using my bedroom I won't have to worry about cleaning the front room. Okay ... there's the dust and things but if I don't use the room, I won't see it ... so that's okay.

I've also figured out that if I make a flask of coffee, it can last me all day and I can drink straight from the flask so that saves on the time I have to spend in the kitchen; as well as on the dirty dishes ;-) So now the new regime is:

I pick a time when I get up. I wake up a few times during the night due to pain but I don't get up till I see daylight. If the pain level is high, I just sit on my bed till I can stand. I go to the kitchen, feed the cat and make some toast while the kettle is boiling.

I generally have to give up here and go back to bed for a while.

I go back to the kitchen and hopefully the kettle, which has cooled down by now, is not so cool that it will take too long to boil. I grab my cold toast, poor some boiled water in the flask and rinse it out at the same time as I rinse out the saucepan from last night. Measure few spoons of instant coffee into the flask.

I have to go back to bed for a while because of the pain levels.

Generally by about 11am I will have managed to make a flask of coffee and brought it back to my bedroom to have my first hot drink of the day. I don't mind telling you that by now I am gasping for a hot drink. But at least I know I will have a hot(ish) drink till I give up on the day later on.

The rest of the day is spent keeping on eye on Freecycle (I am a moderator on our local site), sorting out bits and pieces, knitting and just waiting for the day to end. Generally around 5:30-6pm I head for the kitchen again. Luckily I have an electric tin-opener so I open a tin of soup. I have unearthed my hotplate and it has a timer, so the saucepan goes on there with the contents of the soup tin.

Pain levels send me back to bed.

So far I've managed to avoid having a bowl of hot soup. But at least I know it has warmed through thoroughly at least once before I get around to eating it. I've also discovered that eating it straight from the saucepan keeps the dirty crockery down.

An Open Letter to David Cameron

Dear Mr Cameron,

On 16^th August 2006 I was judged to be sufficiently disabled to warrant being awarded the higher rate mobility allowance and the lower rate personal care; indefinitely as my condition is not curable. I have severe Peripheral Vascular Disease. I was also in receipt of Incapacity Benefit at that time.

Within a few months it was decided, unbeknownst to me, that in fact I should have the medium rate of personal care. However whoever was to have updated the records, forgot to tick some box somewhere and as a result the decision, though made, wasn’t acted on. This error came to light approximately a year or so later. The relevant department was more than willing to acknowledge that the award was back-dated. It was also willing to accept that it was at fault for not correctly updating the records at the time the original decision was made. It however claimed that as the error was over a year old, it would not pay the back-pay that would have been my due.

I have had to face ATOS and its assessment. I could not attend the local assessment centre as it is not wheelchair friendly. I was threatened with the loss of my sole source of income. I informed them that I did not refuse to undergo an assessment but that I could not attend the centre. I was left to wonder whether they would just stop my benefits until, just a week before the day I was due to attend the centre, they finally agreed to visit me at home. Mind you, I had to provide a letter from my doctor confirming that I could not attend the centre and I had 24 hours to provide the letter. After another lengthy conversation it was eventually agreed that I could fax the letter and I was provided with a fax number.

My surgery faxed the letter over. Thankfully, I checked to make sure they had received the fax containing the letter as despite my surgery having faxed it, they claimed not to have received it. So I asked my GPs’ office manager whether she would fax it again while I was on the phone to ATOS. This time, they received it. A few weeks later a Doctor came to the house and I had my medical assessment following which I was confirmed as being eligible to ESA.

A mobility scooter I bought with funds I had saved up for was wrecked by a man who was angry. The criminal damage ended up in court. The man was found guilty and I was awarded compensation for what effectively served as my legs. The paltry sum of £80.00! Of which I eventually received but £75.00 as for some reason administration meant I had to forego £5.00 of the compensation. I suggest you try and get a mobility scooter that can cope with the hills of Brighton for £80.00. I ended up having to save again for a considerable amount of time to replace the mobility scooter.

Then a young man decided to steal my car, just a couple of hours after it came back from its 2nd MOT. I never saw the car again. The young man was found guilty and ordered to compensate me for the loss of my car. The paltry sum of £200.00! A sum I have yet to receive though the order was made in March of this year; which was, just as a matter of interest 42 weeks after my car was stolen. Another interesting fact is that the compensation I was awarded was £38.00 less than what I had paid to get the car through its MOT.

Had either man broken my legs making it impossible for me to move around outside independently, the matter would have been dealt with differently. But your courts of law regarded my mobility scooter and my car as some bits of machinery. Victim Impact Statement?; utterly disregarded as was the fact that both crimes effectively left me housebound, increased my dependency on others and consequently doubled my weekly outgoings as a result. One of your Conservative MPs agreed to look into it. After months of unsatisfactory exchanges, where Simon Kirby was silent except for when directly asked, I finally managed to get hold of the copies of his efforts on my behalf; a series of extremely garbled emails addressing nothing.

Then yet another letter from ATOS, informing me that unless I return the questionnaire by the 7^th of July my benefits as a severely disabled individual will cease; except that surprisingly, there was no questionnaire. Yet more phone calls, chasing this questionnaire which eventually arrived. I answer the questionnaire. I post the questionnaire. On the 28^th of August, I prepare to pay some outstanding bills only to discover that my ESA has ceased. It is the bank holiday weekend and so I have to wait till the following Tuesday only to hear that my sole source of income has ceased as ATOS claim not to have received the questionnaire.

No ifs, no ands, no buts. Just cut off everything. No warning, no appeal, nothing. I, as a severely disabled individual have to start the entire process of registering a new claim. I have to go through a period of a minimum of three months awaiting an assessment with ATOS. I have to apply for sick notes. I have to apply for housing benefit or risk losing my one bedroom residence.

Mr Cameron, I refuse! I will carry on with my life and do the things I can for as long as I can. I will use my phone, till it gets cut off. I will buy my food, till I can’t pay for it anymore. I will stay in this house, till they evict me. And once they evict me, I will leave. I’ll trundle in my wheelchair till it stops and there I will sit till it is all over. I’ve fought all my life. To look after my brothers while mum was at work; to stick by my children when their father walked out. I studied, worked and volunteered, I fought. I give up!

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