This morning I woke up and I was instantly hit by my daily dose of nausea. It’s still with me now at 11am and will remain with me until about 1pm. Upon waking I tried to move but the pain was so intense I couldn’t. I was without adult support this morning as my husband was at work. I therefore had to call my 9 year old son. He can’t massage my back to free up the spasms as he is too weak so instead for 15 minutes he crawled on my back. It sounds odd I know but it’s the only thing that helps to lessen the pain. Whilst he was doing it though the pain was so intense that I screamed and cried. The whole time I was thinking about how awful it is that my son is having to witness this, to put me through this pain in order to help me. He then tried to fill up a hot water bottle from the hot tap as he’s not allowed to use the kettle, he brought me a drink so I could take my medication and then went off to make his brothers’ breakfast. He then brought the laundry out of the tumble dryer and put on the next wash, and got himself ready for school. At half past 8 there was a lot of fussing to get ready for his grandad, time was short as he’d done so much else. This happens everytime my husband isn’t here in the morning.
Up until last year I’d had support from a carer but that was removed, seemingly because I had a new board fitted in my shower so now I can wash myself. I can’t wash my own hair though, my son does that. I have remissions and relapses too so some days, some periods, I can cope. It’s just difficult. However, other times I can’t cope. Today is somewhere in the middle. I could walk down my garden path but further would be too painful. I can sit up straight for a while but I need a hot water bottle. On the days when I can do neither I curl up in bed with my two home-schooled sons and teach them under the duvet. I would rather not have them home at all, but my son has autism and he has also been let down by the state. If I’m too ill to make a sandwich I have to order their dinner in. This costs me about £100 per month. The situation leaves me feeling inadeaquate and depressed. My poor old dad who suffers from COPD has to do a lot of running around for me. He does the school runs, he takes my child to his autsim support group, he picks up shopping for me. The burden is too much for him. My mum who also has health problems similarly has to offer such support. I will never be able to drive unless I miraculously get better as the brainfog is too intense. I had tried to have lessons, but kept making dangerous mistakes when I zoned out.
I only leave the house every few weeks. Luckily my husband works an odd timetable so he’s often here to take the kids to home education groups and on educational outings, or they would be similarly confined to the house. People are willing to take me out, but a lot of the time I feel too fatigued even to prepare to go out. It makes me horribly reclusive and I have spent a large proportion of the last twenty years at home alone. It hurts, it’s lonely. I often feel like I’m a piece of furniture and dream about recovery and leading a normal life. It has given me serious bouts of depression, combined with an easting disorder which seems to grab at me every few years. I believe it happens when the loss of control because too much. Two years ago this culminated in a month long stay in a psychiatric hospital
I’m constantly in pain and take a plethora of medication. The muscles supporting my spine have atrophied so there is spasticity all along my back. Lumps, lipoids, push on the nerves and provoke further spasms. The muscle relaxants I take help, but they do not stop the pain by any measure. As with all medication there comes horrible side-effects. My teeth have been eroded and are damaged by the constant vomitting some of my medications have caused. It’s often a case of weighing up which is worse: the pain or the side effect.
I’m only telling you this because I want you to understand how upsetting it is for me when I see a constant stream of stories about “scroungers”. The belief, amongst many, that half of the people classified as having a disability are “benefit cheats”. The actual figures are 0.3% and 0.5% depending on the benefit. Ignorance regarding mental health, dynamic and invisible disabilities fuel the public’s belief in the government’s and the right-wing press’s anti-disability propaganda. If they can’t “see” you’re ill people they believe that you aren’t. This week the government also announced an extra cut of £10bn from the welfare bill. They’re already trying to remove disability benefits from hundreds of thousands of people, where is this extra money going to be cut from? Incredibly unwell people are being found fit for work, people are dying, and committing suicide, the government are cutting services aswell as benefits. Isn’t it about time that we told the government that we will no longer tolerate people with disabilities being made to pay for the mistakes and greed of bankers? The government could, instead of cutting the welfare bill, seek to reclaim lost taxes. In fact, the figures for lost taxes pretty much cover all of the money being cut from the welfare bill.
Watch this video http://www.youtube.com/watch?v=b6-iTZR8CoI&feature=youtu.be and sign this petition http://epetitions.direct.gov.uk/petitions/20968 and say enough is enough.