I had so many plans for May – which is Ehlers-Danlos Syndrome awareness month, and it’s just all gone by in a flash of bad health, hospital appointments and glass making.
Fused glass making is a new hobby I’ve got into, and I’m really enjoying it. If you’re interested in seeing my new makes I have a facebook page and a Folksy shop (the UK equivalent of Etsy). I’m also running a competition to win a Dotty Suncatcher at Facebook as soon as my page reaches 100 likes. It’s difficult starting a new page from scratch, so any support there would be really appreciated.
Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant
I’ve been making jewellery for awhile, and have wanted to try glass making as something that would go nicely with it (i.e. making pendants/jewellery out of glass), but also being able to branch into something different like dishes, candle holders, etc. I find the jewellery making market quite saturated, and difficult to stand out. Not that I would ever be well enough to make a business out of my crafts, they all remain hobbies, but it’s still nice to sell the odd thing to be able to pay for my glass or beads!
I’ve spent most of my month having medical appointments, including having some awful tests on my bladder – which I will never ever have again. They all came back clear for blockages/cysts, which means it’s down to spasms probably caused by the Ehlers-Danlos Syndrome, so the next step will be medication.
I’ve also been to Cambridge to visit the biggest sleep specialist clinic in the UK. I’ve had problems with my sleep since I was 15 – from severe bouts of insomnia, sleep patterns all over the place, horrible levels of fatigue, day-time sleepiness, and unrefreshing sleep. I got put in the wrong clinic – I should have seen the consultant as it’s the EDS causing the problems, and the autonomic dysfunction and adrenaline issues that go along-side the condition. Instead I got put in the nurse-led insomnia clinic, where they give sleep hygiene advise, such as go to bed at the same time, have a dark room, etc. I know. I’ve had this problem for twelve years, I’ve tried all the basics. This visit was an end-of-my-tether, absolutely desperate need for real medical help. Luckily the nurse did seem to understand my point, so I’m going back next month for a sleep study test which will hopefully be a start, at least.
For the last year I’ve been trying so hard with exercises tailored towards my condition. For sometime I’ve stumbled along seeing physiotherapists who know nothing about my condition, and having a six-week block of hydrotherapy every few years. So sometime ago I decided to put my foot down, and get some real help.
I found a physiotherapist who specialises in EDS, a rarity indeed. His clinic is in another town, but the way he does things means I don’t have to visit that often – he gives me lots to keep going on my own, and does progress checks. I also started doing 1-2-1 Pilates sessions. I’ve tried this a few times – joining a class, or going to the physiotherapy-led Pilates sessions at my local hospital. Both were total disasters, and were aimed at people way healthier than me. Even the hospital ones which I thought were for people with injuries were awful – as most people in the sessions had one problem area – a bad knee, a bad shoulder. Sadly that’s way above my level, as I can’t stand for more than a few seconds, and have problems with every joint and muscle group. So I would just end up half-collapsed in the corner, rather than having effective assistance.
1-2-1 has been great – the instructor has tailored everything towards my condition and problem areas. It’s all on the mat, so no standing at all – and she breaks everything up so I’m not concentrating on one area for too long, which always leads to a flare up. What I do is very basic compared to a healthy person, but between the physiotherapy, pilates and more regular hydrotherapy, I’ve had lots of improvements physically – more muscle control and strength. Sadly it’s not translated into any pain relief at all, which has been incredibly frustrating as that’s obviously why I’m doing it. No one can tell me why it hasn’t helped in this way, but I’m not going to give up – although it really should have helped even a little by now, so I’m not sure it ever will. Hopefully it will stop things getting worse, and help prevent additional injuries though, so it still has a place.
My last piece of news, good this time, is that I’ve now completely given up my huge vice – Diet Doctor Pepper for just under six months. I’ve been trying to kick that habit for years, so I’m thrilled. I’m now a water and ice kinda gal.
So that was May. Hopefully June will bring more glass making, less medical appointments and lots of warm weather.
This year my health has gone downhill somewhat. I suppose it has been doing that for some time, but when I finished my previous job I just knew I couldn’t do it anymore. I was a total mess, and my list of needs and adjustments from a job was getting longer than the job description itself.
In April I applied for Employment and Support Allowance for the first time. For those of you that don’t know much about it, it’s the benefit that replaced Incapacity Benefit – for disabled people who can no longer work.
There are three rates – the Assessment Rate, the Work Related Activity Group (WRAG) and the Support Group. If placed in the WRAG they admit you’re too ill to work currently, but feel you should be able to work with support in the future. People in this group have to attend regular work-related meetings with companies who receive bonuses if they can get you into work; can be forced into unlimited work-placements and can even sanction you. So in one breath they admit people in this group cannot work, and then force them too – and stop their benefits if they refuse. The Support Group means they feel you cannot work, and do not expect you to anytime soon.
The way the system is supposed to work is that you receive the assessment rate for 13 weeks, then either a decision maker at the Department of Work and Pensions (DWP) decides if you should go in a group or be found ‘fit for work.’ If they feel they don’t have enough information they can send you for a medical with ATOS. The assessment rate is lasting much longer than 13 weeks, however, which is probably because a large amount of people are being sent for the medicals despite copious medical evidence with their applications that should give the decision maker enough information to decide.
The medical tests themselves are highly controversial as it’s been shown those carrying them out are under a lot of pressure to find the person fit for work. The tests are extremely limited in scope, and most people are indeed found fit for work and then have to appeal it. In most cases this decision is overturned at tribunal level – showing the system is flawed. The whole process causes a lot of stress to the claimant and this horror vastly increased in October when they decided that if you were found fit for work and appealed, you’d no longer be paid the assessment rate while you waited for the tribunal – which can take up to a year to happen. The benefit starts at £56.80 a week for under 25s, and £71.70 for over 25s. This amount is what people have to live on, and removing it is beyond cruel.
In July I was told I would be having a medical. While expecting this, I was still annoyed as my claim included excellent medical evidence. My GP had written a long letter, as well as my Occupational Therapist. I also had a pile of letters from my consultants including the top specialist in Ehlers-Danlos Syndrome in Britain.
But I heard nothing for six months. When October passed my worry increased dramatically. I wondered what would happen if I was found fit for work and had no income while I appealed. I fretted about how I’d pay the rent for the accessible bungalow I live in, or pay for the treatment the NHS won’t cover.
I’ve also been through all this before with Disability Living Allowance and it wasn’t a very fun time. I pretty much had a mini-break down and had to go through two tribunals. You can read about that starting here and follow the whole saga under the tag ‘benefit claim’.
Having had bad news so often before, and living in constant fear of bad news from the DWP – I have a certain reaction every time I spot their distinctive letter I call the ‘dreaded brown envelope.’
I’m a little superstitious, even though I know it’s silly. I say the rhyme when I see a lone magpie, I throw spilt salt over my shoulder and I make a wish when the numbers on a clock are all the same. I’d been lying awake for some hours trying to sleep (not uncommon) when I spotted it was 2:22am. I made a wish. “Please. Please just let me know either way before Christmas.”
The next morning I was hobbling past the front door when it caught my eye. The dreaded brown envelope. My heart began to thump and my breath caught in my throat. I opened it quickly, and tried to make sense of it. Two words stood out to me – Support Group.
Relief flared through me, but as I read further it stated that I’d been placed in the Support Group from July – 30th November.
When you get put in a group a time of claim goes along with it, and I was aware that people have been placed in a group before and thought they were okay, only to find out that by the time they’d been told which group they were in, their claim had finished. Was that what had happened to me?
I immediately phoned the DWP and spoke to a nice lady who looked my claim up, and agreed that the letters were confusing, but those dates were referring to back pay. They agreed I should have gone into the Support Group from July, and up until November 30th had been on the assessment rate. So I’d get back pay up of the difference between the Assessment Rate and Support Group Rate until that date. Then from the 30th November my claim will run for two years.
I began to cry – and apologised to the poor woman. I explained I was just so relieved. She responded kindly by saying I didn’t have to worry about any medicals, or sending anymore sick notes.
I honestly can’t believe I got put into the Support Group first time and didn’t have to go through a medical. It seems incredibly rare with ESA not to have a medical, and even more so to be put straight into the Support Group.
I can’t even begin to put into words what this means to me. It should mean some financial stability during this time – until the Personal Independence Payments rollout.
Credit to: Cieleke
I haven’t updated in forever. There is a reason for this: I moved house!
We have desperately been searching for quite some time – half looking for a couple of years, and properly trying for a year.
We had a battle with the council who puts everyone into ‘bands’ and were banding me too low for my medical needs. This was detailed in the post When Those Who Are Meant To Help Do Not. We finally got the right banding – but it was still totally impossible to get the right housing for me, as they all went to downsizing their properties.
Then I was awarded Disability Living Allowance, written about in the post And the results are in…, and became entitled to claim Working Tax Credit – which went my income went from pitiful to being able to contribute to the rent.
See, the thing is we really wanted a bungalow. I struggle with the stairs, so wanted everything on the group floor, but the thing with Fibromyalgia that doesn’t get mentioned so often is trouble with noises. It’s not all the time, but it comes over in waves and it feels like a drum playing directly on your brain, and your pain levels shoot up in response. It overwhelms you, and you can’t concentrate on anything but the noise, and the panic rises until it stops. So, we felt a bungalow would be good having been cursed with noisy neighbours previously.
But bungalow rental costs a lot more than a house or flat, so it was a distant dream until I could contribute. Our ideal place was two bedrooms – with another room of some kind. A box room, a dining room – something. And then this place came up. A two-bedroom bungalow with a conservatory.
We were the first people to see it (which you have to be with a bungalow) and we took it on the spot. The living room could fit about four of my previous living rooms in. I have this beautiful space in the conservatory for crafting, and computer work. The bedrooms and kitchen are a little small, but the rest outweighed that. There is a lovely enclosed garden for my cat, as well.
What I didn’t bank on was how much moving would take it out of me, for days all I could manage was a shower and then sitting on the sofa for the rest of the day. But we are slowly getting there with the unpacking, and yesterday I put together my craft room!
My final worry is that after a year the landlord will want to sell it, but here’s hoping to happy times here.
My garden – own photo
Finally after years of stress, struggling and tears I’ve been awarded Disability Living Allowance. Both Care and Mobility, at Higher Rate Indefinitely.
They sent the confirmation six working days after I saw the doctor – which isn’t long at all, although it felt like an eternity.
I can’t explain what a difference it will make. I now become entitled to Working Tax Credit, free prescriptions and dental care (because of the WTC), can get a motability car or free car tax. Overnight my income more than doubled, as I was living off 16 hours a week at minimum wage.
I will be able to afford to pay for the treatment I need, and help pay for a cleaner to help mum out as she has to look after the whole house and care for me. And I can put towards to rent to get us a bungalow – something we have been struggling with the council for years with. A bungalow would allow me to be able to access my own room, access the toilet and have parking outside the house – rather than down the street.
So to those out there still battling the system – please don’t give up. It took me three claims, two tribunals and two medicals – but I got there in the end.
I do kind of want to send my award to the head of the second tribunal who said I was contriving my conditions/help I need, and to the first GP who did my medical who said there was nothing wrong with me with a note to them attached – you can imagine what that would say, but a hint is that it’s two words long.
I now have a pile of consultant’s reports telling them they were totally wrong, and an indefinite award in response.
Credit to Steffen Zelzer at http://www.flickr.com/photos/67721855@N06/
It’s a fantastic feeling.