Good news and bad news
My job offer is now formal – I’m so pleased. I have a lot on at the moment. Our local council has decided to remove access to all the central, level blue badge spaces in the town centre and add more to the existing car parks on the outside of town. They are much too far for disabled people to walk to. For over a year as chairperson of the local access group we’ve been fighting the decision and trying to get them to come to a compromise, but they haven’t been interested. Yesterday they published the official order to make the changes, so I’m madly working on a response to the formal consultation. My wrists have chosen now to flare up as well, which is making life quite... read more
Demonising the Disabled
Ron Liddle from The Sun wrote a column condemning the ‘fake disabled’. He says, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.” Peaky? This describes people that often become totally bed-bound, are in crippling pain, too exhausted to lift your head off the pillow or have to use a wheelchair. ME regularly kills people after ravaging their immune system, although the press keeps quiet on that. People don’t speak of the young people having to live in their beds due to the pain Fibromyalgia causes. Another charming person, this time James Delingpole from The Telegraph, writes in support of Ron, claiming that there are eleven million people now saying they are disabled, and this it what’s crippled the economy. Eleven million disabled people there may be, but only 2.6 million claim Employment and Support allowance, the ‘not able to work’ benefit. The other 8.4 million actually work. Crazy, I know! (No reflection on those that can’t work meant, just that there is an assumption that disabled people don’t partake in employment.) It may be many people now fit the definition of disabled, which is ‘A physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out day-to-day activities’ but the vast majority of disabled people try their best to work. Another couple of points on these multitudes of disabled people crippling the economy is that Employment and Support Allowance is around... read more
“Any organisation is like a septic tank. The really big chunks rise to the top.”
The story of how I found inspiration in social policy and services for people with disabilities is detailed in the post, “To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.” I was just being transferred to a new agency, where my manager asked them to meet with me on day one to discuss reasonable adjustments. I spent that first meeting detailing my conditions and how they impacted me, and the reasonable adjustments I’d had in place to help. They weren’t put in place. There isn’t a lot I can say from here, but within a month I was so stressed and ill, that one day when I was driving to work I thought I’d rather get into a car crash than go in for the day. Instead I headed to my GP, and she was shocked at the changes I’d undergone in a short term – and insisted on signing me off for a month. Everyone wants to have a good relationship with their employee, and when you have a disability you have to fully trust they will do the right thing by you to enable you to carry out your job. That sick leave lasted six months. I couldn’t get through a day without spending most of it sleeping. My pain levels were sky high. I stressed and worried about everything – it impacted every part of my life. Towards the latter half of the six months I was off, I began to get back on my feet and began applying for jobs. None were really what I... read more
“To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.”
I was never sure what I wanted to do when I was growing up. Many of my friends had obvious interests or skills which led to a clear career path. But I wasn’t particularly good at anything at school. I was okay at English, okay at IT. I was appalling at art, and told basically to just stop, which is funny because I can be creative, but not in the very narrow way they wanted me to be. I picked my A Levels based on enjoying English and IT, and quite liking the teachers I spoke to who taught Psychology and Politics at the college. I then found I really enjoyed Politics, and found a kind of passion in it, which then encouraged me to do a degree in the subject. Many people see it as a staid, dull subject, full of middle class white men arguing and waving their fists at each other. In reality, that’s a tiny part of what politics is. Politics is everything. It’s the area you live in, the roads you drive on, the places you visit, your income and the way we as society treat each other. One thing I picked up on quite early was how housing can have such a profound effect on your life. Housing has a direct impact on your education (how can you study without a quiet, safe environment?), your health – (can you be truly healthy in a cold, damp property, or with stressful neighbours or landlord, or with expensive repairs hanging over you) and even your life chances. Have you ever pulled a face, or immediately... read more
Keep on, Keepin’ on
I have a job interview next week, which involves a presentation (eek!). My work situation at the moment is dire, and this job seems perfect for me. I could have written the description myself. It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access. I’ve spent weeks planning out and writing my presentation over and over. I have to map out how I’d carry out the project, my plan for sustainability and all my ideas. But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.) I’m dreading going back, it makes me feel sick. My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes. I’m fighting a battle with my local hospital as well. I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do. Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point. There is an underlying issue there. My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a... read more
Three Weeks in Rehab – Day Twelve to Fifteen
I wake to find my pain on the ridiculous side. My right arm is in spasm and I can’t move it much. My left knee is also being difficult, and generally the rest of my muscles are all moaning at me. The pain is a lot higher than my usual constant pain. The weather is miserable, which I guess it apt, but I worry about my wheelchair as I’m never quite sure how waterproof it is! First up is stretch, which is okay. I would enjoy it if it wasn’t at 9am, and I tend to be quite dizzy for the first few hours I’m up. Straight afterwards I have a gardening session, which I enjoy. Viv, the lady who runs it is really nice and chatty, and I re-pot some interesting looking plants that are going to be put into baskets to be sold later in the year to raise some money. The next session is Maintaining Change, run by one of the psychologists. We talk about reasons to keep going, and what may sabotage us. One thing that’s discussed are lapses and relapses. Lapses are where for example if you’re giving up alcohol, you have a drink , but then get back to it. A relapse is where you have one or two, think oh bugger it, I’ve ruined it now, and start drinking every day. Someone then suggests if you miss a gym session, but then rearrange it for later that day, it’s a lapse. I think bloody hell, I’ve got no hope if you’re going to be that stupid about it! (To me that’s rearranging,... read more
Three Weeks in Rehab – Day Eleven
The day begins with a weekend review. This is everyone taking it in turns to say how (or how they didn’t) meet their goals we have to set each week. I didn’t meet a couple of mine, but I imply I did, as I don’t want to start the weekly with a lecture! I spent most of the weekend doing absolutely nothing, but hey what’s wrong with that after such a packed week? Next up is Anatomy and Healing. It’s almost exactly the same talk from the week before. I hate it when they do this – they repeat some of them and they are mandatory to attend. The session runs better than the previous Anatomy one that ran though! New people have arrived for their programme, and we meet them better at lunch. They’re all a bit older and quieter than the last two weeks. After lunch I have a Wii Fit session, looking at balance. It’s really hard and I’m crap at most of the games but the Wii does make it more interesting than a balance board. I find standing very painful, but I have a chair next to me so I can keep sitting down. Later on I have physio. We do a lot more core work, then she decides she wants me to do some walking tolerance. This makes my heart sink, as I’m quite walking intolerant, thank you very much. This is something I’ve explained to her at length. I get a feeling when some doctors/physios see you in a wheelchair, they believe you’re using it all the time. It isn’t the case... read more
Three Weeks in Rehab – Day Ten
I awake and am horrified to find that her arm is still dislocated. I had heard up until the doctor trying, and had then fallen asleep at about 2am. I had no idea she hadn’t been able to get it back in until she told me what had happened.
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Three Weeks in Rehab – Day Nine
I wake up feeling human and I’m not totally shattered, I don’t spend the day collapsing in bed every spare minute I have! Finally!
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Three Weeks in Rehab – Day Eight
Once again it’s not a great day physically. Yes, I know this is a reoccurring theme and it’s dull! I can’t function in the morning though, but drag myself out of bed until one of the girls in the ward tells me I’m mad, and to get back in bed.
read moreAbout Me
Hi, I'm Jade.
I'm in my early thirties, and live in the UK. I have multiple chronic illnesses with my main condition being Ehlers-Danlos Syndrome. This blog is about finding hope amongst the frustrations.
You can contact me at: info@chronicchronicles.co.uk
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