Nov 11, 2011 | Daily Life, Hobbies
I first got into crafting about two years ago, by making cards. Someone had suggested to me as they’d found a good distraction from their pain. I soon found I enjoyed it, but wasn’t very good at it. I then gave jewellery go and loved it. Eventually I started selling to friends and family, and sell extras at my website www.sparklyplace.co.uk. I don’t make anything from it – just enough to let me replace beads and findings. Over time I have found a lot of disabled people are also into crafting of different types. It’s not surprising; it’s very relaxing and has other benefits. It gives you pride in something you’ve accomplished, and most importantly – it does give a distraction from pain. It doesn’t make it go away, but anything that concentrates your brain and means you aren’t therefore focusing on whatever is hurting. At school my art teachers told me to my face I was terrible; my stick figures run screaming in terror, and I was always envious of my friend’s creations. While I’ve always enjoyed writing, I didn’t feel I had a creative bone in my body. I’ve since realised there are lots of ways to be creative, and my art teachers shouldn’t have been so narrow minded. If I picked up a paintbrush, the results wouldn’t be pretty, but I can design and create a piece of jewellery. There are some downsides. Crafting is expensive and can be very addictive. I, along with many others, find more time is spent buying pretty beads than actually making. I spend lots of evenings on eBay and bead... read more
Nov 10, 2011 | Coping Methods, Daily Life
I would say sleep is pretty important to most people, but when it comes to chronically ill people – good sleep is like gold dust. A rare and a magnificent thing (if gold dust is particularly magnificent?). Sleep becomes difficult with a lot of conditions, whether they can’t sleep, don’t sleep well, find it difficult to sleep due to pain, or sleep way too long. My sleep pattern is all over the place. It’s often a few hours interrupted by pain, often not getting to sleep until 4:00-5:00am. Then I’m falling asleep throughout the day as I didn’t get a good enough sleep. Then every week or so I’ll sleep far too long – sometimes 16+ hours but still don’t reach that final deep stage of sleep – so I wake feeling unrefreshed. I often have bouts of insomnia where I’m awake all night, and a mess during the day. Insomnia is something I wouldn’t wish on my worst enemy. Whether it’s one night of sleeplessness, or much longer, it’s just horrible and when it happens to me, the fine line between being a bit of a wreck, and being in the gutter shatters, and I’m a cranky, exhausted, mess. This happened inconveniently for the days running up a wedding at the weekend, and I spent the whole of the ceremony – pretty sure captured on camera as well, desperately trying to keep my eyes open and mostly failing. It usually causes splitting headaches, moodiness, and the inability to enjoy anything. Your bed becomes all you can think about, and the further away that elusive ‘collapse into bed’ moment... read more
Nov 8, 2011 | Opinion
The NHS is currently under threat from something called the ‘Health and Social Care Bill 2011’. The bill will make many changes, including abolishing Primary Care Trusts (PCTs) and grouping together GP groups to run their area. While we hope GPs are making decisions based on the patient, they are much more likely to be influenced by finances under the changes. I also hope my GP is spending her time reading the latest research, keeping up to date with training and new medications, not budgeting for the local area. It will allow private companies to take over NHS hospitals, or the services that appeal to them and will stop the NHS being the comprehensive service it should be. 20% of the NHS budget will be spent on things like dealing with the contracts with private companies, advertising, the legal bits that go along with contracts, and a lot of other stuff that isn’t providing quality healthcare or trained staff. Many people will be made redundant – with payments having to be made, and those running the PCTs are likely to then be employed to be consultants to the GP groups. The postcode lottery that already exists will become even more pronounced, with standards and range of care dependant on where you live. Hospitals will be able to treat more private patients, which seems okay in principle into you need the bed someone who can afford to pay for one is in. It is one thing if you have an injury and go to A&E to be fixed, or you need a single operation like a knee replacement. The difficulty... read more
Oct 13, 2011 | Daily Life
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 –... read more
Sep 8, 2011 | Access, Hospitals, Volunteering
I haven’t updated in awhile, because I think I’ve been in a bit mentally exhausted. I seem to have something on every day – whether it be medical, or the voluntary work I do for on disability access – I could do with a break, but the show must go on! I had an assessment at the Royal Orthopaedic Hospital to see if they will accept me for their three-week inpatient pain management programme. It was a bit of a nightmare with my electric wheelchair wheel dying just as we got to the hospital, only for them to say we’d been sent to the wrong building anyway. I had to wait for a porter to get me – who came half an hour after my appointment time. I have to say my anxiety levels hit the roof and exploded through. It does involve a shared ward which is quite a worry, as I can’t deal with light or noise and sleep very lightly, so other people snoring is a big worry and not being able to go to bed when I’m shattered as we have to be up at 7am which is going to cause loads of problems for me! In other news our local council are making plans to make the High Street buses, taxis and motorcycles only. This is causing a lot of concern as this is the road a lot of blue badge holders park along to access the town. It’s also going to cause mayhem in all the rest of the town, as when one part closes it causes deadlock. I’m on the committee of... read more
Aug 26, 2011 | Benefits, Daily Life
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... read more
Aug 19, 2011 | Daily Life
My house is completely unsuitable. For a start it has very steep unadaptable stairs that I struggle to get up on good days, and not at all on bad, it has large steps at the front and back that my wheelchair can’t get up (and it needs to come in to be charged), the parking is quite far up the road which is very much a struggle, the rooms aren’t big enough to have the equipment I need to help me, and the road has the highest pollution in Colchester – which I’m allergic to.Our local council housing works on the system of ‘bands’. Everyone is put into bands according to need with A being the highest, going down to E. There are all kinds of categories that move people up bands, such as overcrowding, being homeless, fleeing from domestic violence, or medical needs. Band C covers people for ‘minor medical need’ and band B for ‘major medical need’ and A for ‘severe medical need.’ We were originally in band D, and put in a medical claim, that moved us to C. Sadly, band Cs have pretty much no hope at all of ever getting a property, so we put in a second medical claim. In the meantime I had accumulated a stack of medical evidence, and shiny new diagnoses, and had become a wheelchair user. One of the symptoms of my conditions is that I find noise very difficult, as it increases my pain. There is a scientific reason for this – it’s due to sensory overload, so we thought it would be really nice to have a bungalow, than... read more
Aug 16, 2011 | Coping Methods, Daily Life
Health.com has written a list of twelve things you can do for someone in pain. It’s aimed at those with rheumatoid arthritis, but it would apply just as much to those with Fibromyalgia, as apparently those with Fibromyalgia tend to have a much higher level of pain, that’s constant in nature. Some of the ones I like best include: 3) Slow Down. The lady describes going for walks with strangers, and they’d go at her pace, and allow her to lean on them at times. I am very limited in walking now anyway, but back when I could walk, slowly and in pain, I was always grateful to those who slowed down for me, and allowed me to stop and rest without judgement. It’s so lovely complete strangers would do this, when I found it wouldn’t even occur to people very close to me. 4) Make a Bed. I’m lucky enough that I no longer have to do this as I have support in place, but at university when I had to change my sheets, it was something I dreaded. It left me in agony and I’d then collapse, exhausted for hours. I have since found this genius produce All Zipped Up – which simply has a zip all the way round to make changing it to so much easier. They would make excellent present. http://www.allzippedup.co.uk/ 7) Learn and Believe. This would be my number one. I am so, so grateful to the people that take the time to google my conditions, and read about them. I’m very grateful to those that can even just give an approximation of what I actually... read more
Aug 11, 2011 | Employment/Work
I received my occupational health report this morning, which made for interesting reading. I might be a little cranky today, okay? So keep that in mind. My work deciding not to pay me anything for the month also didn’t help. (They have reconsidered after many phone calls and emails.) So, the first thing the report says, on the very first page, is that I’m fit to return to work immediately – remember that! Then page two began with an introduction from the medical company who said I’d been referred so my employer could find out what my conditions are, whether me working 22.5 hours a week is suitable, how much sickness am I likely to have, whether I still need to work from home and why, and finally whether I’d be covered under the Disability Discrimination Act (NO, it doesn’t exist anymore). They continue to say I have a number of conditions which include a “so-called connective tissue disorder.” What the hell is that meant to mean? There is NOTHING so-called about Ehlers-Danlos, thank you very much. Then they say I have Fibromyalgia, which is “aches in various joints.” Oh, I wish. Then the report writer passes it over to the doctor. Thank god, I’ve had enough of that little weasel. The GP clarifies my actual conditions, where I’m at with medication and medical treatment. That I scored highly for anxiety and depression, and that I looked ‘profoundly unwell.’ He then says I am currently unfit to return to work, although he notes I would like to continue working. He says office based work is completely unsuitable currently due... read more
Aug 10, 2011 | Benefits
My DLA medical finally arrived yesterday. If you remember I had some difficulties over the location, first by them saying I couldn’t have it at the centre, before they said I could as it was accessible. The same friend helping me with the claim came with me for moral support and to be a witness, as my last medical went so horribly wrong, when he put the opposite of what we talked about down throughout the form and declared me fine as detailed in the post ‘Applying for Disability Living Allowance Part 2.’ We arrived at the door and pressed the buzzer for entry. I was slightly worried at the big step into the building, but saw a sign with a wheelchair on, that said to ask for assistance. I assumed there was a door around the side or something with level access, but when the receptionist came to the door she informed us that was actually the only door. So yes, I did have to get my wheelchair up that step and the building for accessing people with disabilities did not have wheelchair access. I asked if there was a ramp, and the receptionist said there wasn’t. My friend pointed out we’d informed them I was coming in my wheelchair, and the receptionist snapped she hadn’t been told. I then asked if she could help me, and she said she wouldn’t. It’s important to note the lady helping me is also disabled, and is on two crutches, so there was nothing she could do. But instead of recognising this, the receptionist turned to my friend and said “You’ll... read more
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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