I recently lost my DLA higher rate mobility and was therefore unable to renew my blue badge. This has left me really struggling – just weeks after receiving a wheelchair from my local wheelchair service. I could try and apply but would have to go for a medical and reading the criteria I wouldn’t qualify. Basically because I can walk across the carpark I can’t have a blue badge, even though if I can’t walk around the shop.
Already this has meant that my husband has had to push me half way across a stone carpark and when I go to guiding events I won’t be able to park near to the entrance so I won’t be able to use my wheelchair. On a trip to Filey I was unable to park where I wanted to be which meant I couldn’t spend time with my kids in the way I and they wanted. Absolutely barmey when you consider that just over a month ago I received a prescription and voucher for a new wheelchair! The wheelchair had to sit in the car because I had to climb down steps and the extra painkillers I had to take as a result have caused 2 days of side effects.
It’s crazy enough that I have lost my DLA mobility which has caused me considerable stress and has meant my parents have had to purchase me a new car but losing the blue badge has been a nightmare. The decision is a farce. They didn’t write to my GP initially and when I asked for a reconsideration they contacted my GP asking her to comment on my dementia presumably because I have written about my memory problems. I’m 29 years old so it’s fairly clear I don’t have dementia i’m sure. To top it the letter saying there would be a delay as they wrote to my GP was addressed to the wrong address and was luckily found by one of my Brownie mums in the flats nearby which have half the same name!
Addressing the blue badge situation I have created a government e-petition as it seems totally ludicrous to me that you could be given a wheelchair and not be given a blue badge. It appears that in Scotland that I would have been given one so it’s not an unreasonable request. If you’d be able to sign it it would be much appreciated.
A few weeks ago now I saw a job advertised for an activities coordinator in a local care home. I applied and got the job. I handed in my notice and have just finished 2 days of induction for the new job. The snag is that after 2 days induction I am in huge amounts of pain, I feel appalling and I know in my heart of hearts there is no way I’m going to be able to do this job. I feel awful, I feel like I’ve let them down and led them on. Worst of all I don’t know where to turn for help and money is really tight.
I really want to work. It really helps my self confidence but in my heart of hearts I now know that whatever job I do will require me to use a wheelchair. My pain is out of control again but the MSK physio has dumped me on a waiting list for an exercise class and hasn’t returned my telephone calls. Any suitable jobs out there are going to former social workers who have either been made redundant by cutbacks or who have left due to stress and I’m stuck because I’m not sure I could manage to do a full time degree – the part time ones are designed for people who have a job to for fill the placement requirements. I have a place to do a full time course in Youth Work from September but there is no childcare.
If this government is serious about getting people back to work then they need to create more jobs, they need to ensure that employers are forced to consider the job they have on offer and make it clear if that role would be suitable for someone who has a disability and as i’ve said time and time again proper vocational training needs to be available to people like myself who need to upskill to enable them to stay in the work they have experience in. We need to encourage people to become childminders and cut the stupid amounts of paperwork (personally couldn’t give a flying f about profiles – I just want my kids to be looked after and cared for). More funding needs putting into welfare rights – I have no idea right now where to turn for help and I really need some emotional and practical support.
Why mess with the system when there are no jobs I don’t know
Had the most horrific night last night and all because I walked about 100 yards 😦
I’m exhausted and sore and yet today somehow i’ve got to get the strength together to get the twins ready and out of the door for nursery, as well as trying to appeal my DLA decision which will see me loose my car and the childcare which gives my girls some quality of life.
If I could affford car insurance I would happily buy my own car rather than rely on motability but with every premium coming in over £1000 and monthly payments being £150 there is no chance. What’s most gaulling about the decision is that they’ve got the same information that I gave on the previous 2 awards! And the government are trying to argue that they’ve not changed anything? Bull
I will fight this because I know I am right. To say all of a sudden I have no mobility problem at a point where i’m taking 36 painkillers a day and unable to walk from the car into church which is requiring me to take more meds in order to sleep is madness. The GP and I have agreed that using my manual wheelchair is my only real option if I want to regain some mobility. With my back i’m trapped in a spiral. My CFS makes it difficult if not impossible to exercise so I put on weight, this has caused me to suffer back problems which means I have to take large amounts of pain meds which cause me to put more weight on. If I exercise my back hurts and I have to take more painkillers. The only feasible way to cut the pain meds is to loose weight which I can’t do because I have CFS, can’t exercise and take stupid amounts of pain relief. My GP and I both agree that all I can do is use my manual chair more and hope I can burn off calories using that. Of course without my car this plan won’t work because I can only push short distances and i’ll be reliant on my powerchair which won’t help me loose any weight.
On top of this is the job problem. Can I start a job when I’m like this? Can I start a job when I could loose my car and not be able to get there? Right now i’m praying for a solution.
Check this out from 1983 – Kind of sounds familiar doesn’t it. Pinched from my friend Julia’s facebook status
If Margaret Thatcher is re-elected as prime minister on Thursday, I warn you. I warn you that you will have pain when healing and relief depend upon payment. I warn you that you will have ignorance when talents are untended …and wits are wasted, when learning is a privilege and not a right. I warn you that you will have poverty when pensions slip and benefits are whittled away by a government that won’t pay in an economy that can’t pay. I warn you that you will be cold when fuel charges are used as a tax system that the rich don’t notice and the poor can’t afford. I warn you that you must not expect work when many cannot spend, more will not be able to earn. When they don’t earn, they don’t spend. When they don’t spend, work dies. I warn you not to go into the streets alone after dark or into the streets in large crowds of protest in the light. I warn you that you will be quiet when the curfew of fear and the gibbet of unemployment make you obedient. I warn you that you will have defence of a sort with a risk and at a price that passes all understanding. I warn you that you will be home-bound when fares and transport bills kill leisure and lock you up. I warn you that you will borrow less when credit, loans, mortgages and easy payments are refused to people on your melting income. If Margaret Thatcher wins on Thursday? – I warn you not to be ordinary – I warn you not to be young – I warn you not to fall ill – I warn you not to get old.
Thought i’d best do an update. Went to the hospital on Friday and was told I have something called lordosis and basically my spine is curving excessively. It’s curable but I need to loose weight and do lots of exercise. Only problem is my CFS as i’m in the top 40% of sufferers and struggle to do much other than lying in bed most of the time. I’m worried that the twice weekly exercise classes are going to knock me out. Now it looks like it’s unlikely i’m going to be able to go back to work because the pain meds are making me really foggy and i can’t care for others in this state – especially with the exercise classes. I’m facing the fact that for the time being i’m going to be best off using a manual wheelchair to get around. At the moment i’m struggling to walk so avoid doing it which isn’t helping. At least in a wheelchair i’ll burn off some calories. All isn’t bleak. I got a second hand powerchair a couple of weeks ago so i can get into town without the car, I have an interview at a nearby care home for an activity co-ordinators job tomorrow 🙂
I have been going around in circles since September trying to get someone to look at my back. Referrals have gone missing or have been sent in only for them to turn round and say they can’t help me because i’m too complex a case and should be seen by a consultant. In the meantime the pain has got worse and worse to the point where I can barely walk. I went for a massage yesterday and she felt that I definitely hae sciatica and possibly a slipped disc.
The problem with a diagnosis of CFS is that whenever you are seen for something they don’t know how to deal with you. I’e fallen asleep in the waiting room after physio before now so it’s fair enough I guess. All the time i’m being told to go back to the CFS serice which is miles away and who have said they can’t help me as I successfully mange my condition.
My manager has been great. I have rung in sick and she’s going to get me an urgent referral to occupational health to see if they can speed things a long. GP has put in another referral to Harrogate Hospital which I hope won’t take too long. In the meantime i’m up to my eyeballs in painkillers and totally reliant on Adam who is having a tough enough time at work without me adding to the stress.
Feeling really down tonight. I’m at work, 9 miles from home and my back is agony and my CFS means that I’ve spent most of today in bed and will spend most of tomorrow in bed just so that I can earn enough to get by. I miss my children so much but there are no jobs nearby that I can do. I shouldn’t have to live like this but I know in my heart of hearts that any assessor would mark me as fit to work. The situation is worsened by the fact that the nearest childminder with spaces is over a mile away from my home so my visually impaired husband has to walk miles with them – it’s a lot for a 6 year old and 2 3 year olds to manage. The only saving grace is that I currently get DLA and use it to hire a car but under the PIP rules I will loose this. No car means me giving up my job and having to raise 3 children on my husband’s salary which is simply impossible. I won’t be able to pay for my prescriptions, massages etc which help with pain relief, won’t be able to take my kids to school or to the childminder and I will loose my disabled persons tax credit.
I just want to be able to use my limited energy to look after my children. I don’t want to be off my head on a cocktail of pain killers just so that I can afford to pay my gas and electric bill every month – it simply isn’t right. I would love to manage to work and to cope with family life but it’s not that simple. DLA helped me but now that’s gone what am I meant to do?
The change to PIP is a backward step based on an antiquated medical model of disability made een worse by the fact that it is lead not by need but by some stupid, unproven notion that it will save money.
And now I try to sleep 😦