May 1, 2014 | Awareness, Education
This post is written for Blogging Against Disablism Day 2014. There are lots of excellent contributions for you to read, so please take a look. It’s the feeling of being completely invisible. From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!” It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world. 38% of people believe disabled people are a burden on society. But these attitudes spread quickly, and seep into all parts of life. That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.” Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.” It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible. Shops, facilities, services and buildings still haven’t complied with the law, and continue to get... read more
Apr 29, 2014 | Access, Daily Life
I found learning to drive really difficult. I had lessons over two years, and I don’t even want to begin to work out the cost of that. Neither of my parents had a car, and so my lessons were my only chance to practise. I found it hard to coordinate everything due to my then undiagnosed Ehlers-Danlos Syndrome, and had awful muscle pain from using them in a different way. I could never have more than an hour lesson as my ankle and foot would go dead, and I found it all very exhausting. In addition, I was also very nervous/anxious, and just thinking about my test caused me to shake like a leaf, which then made me make loads of stupid mistakes. But my worst mistake was my choice of instructor. I picked a lady who stated she specialised with nervous drivers – but this couldn’t be more wrong. Her style of teaching was to keep quiet while I drove, but then ask me to pull over and ask “Where do you think you went wrong on the roundabout five minutes ago?” When I didn’t know/couldn’t remember she’d get cross. She spent all the lesson pointing out my mistakes, with the atmosphere getting more fraught. As time went on, I found instead of growing in confidence I became totally convinced I would never pass. It felt too awkward to ‘fire’ her, so I continued with this situation for far too long, ending numerous lessons in tears. I then went to university, which gave me an opportunity to get a new instructor. He was completely different – calm, more... read more
Apr 2, 2014 | Treatment
I wanted to write about my experiences with acne and the route I took to try Isotretinoin/Accutane, as acne isn’t always something that gets talked about past your teenage years. I was lucky enough to escape my teens with clear skin. Clearly karma said “screw that” and decided to smack me with it in my mid-twenties. I’m not entirely sure of the cause – but a consultant suggested it was likely due to the morphine messing with my hormones. This seemed very likely due to the placement of mine – the lower cheeks/chin, and the cyclical nature of them. Just as one lot were fading, the next lot would appear. Acne can really hit your self-confidence. I was so embarrassed I found myself putting layer, after layer of foundation on to try and cover it – which just looked a mess. I tried lots of different foundations/concealers in my quest to tone down the redness, and for a long time wore Estee Lauder Double Wear – but found it slightly too dark for my skin tone. The best I’ve found is Bare Minerals, as you can easily add to areas that need coverage, while leaving the clear areas looking much better. If you ask most acne sufferers what percentage of spots cover their face, they’ll often say 70-80%. But in most cases, even in pretty bad cases – it’s a far, far lower figure. The spots often group in specific locations, or have a number of bad spots that draw the attention and the rest of the skin tends to be clear, yet the spots are all the acne... read more
Mar 18, 2014 | Awareness, Education
Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that. However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them. When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance. Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be. We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting. Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get. But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you... read more
Feb 28, 2014 | Awareness, Education
There are lots of these special ‘days’ – Talk Like a Pirate Day (19th Sept), Hairstyle Appreciation Day (30th April) and National Sandwich Day (3rd Nov) but a really important day for me is Rare Disease Day, which is today. A disease is defined as a condition that’s abnormal, and affects the body of a living being. Here are some facts about rare diseases: There are over 6000 rare diseases A disease is classed as rare if it impacts fewer than 1 in 2000 people 30 million people live with a rare disease in Europe 80% of rare conditions have a genetic origin I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder. There are various types of the condition and the most common type is estimated to impact anywhere from 1 in 5000 to 1 in 10,000 and the least common types have only been diagnosed with a small handful of people. Rare diseases are neglected – in research, care, NHS services and provision of medical expertise. There is a lack of understanding and awareness in every part of the medical community. But rare doesn’t mean we don’t matter. While I had mild symptoms from birth, the real trouble started when I was 15 – and it took me another eight and a half years to be able to put a name to my pain, fatigue and countless other symptoms. I’m lucky – many others don’t get diagnosed at all. That’s why recognition is vitally important. Many seeking answers are instead labelled incorrectly. The word hypochondriac sneaks into their medical notes. They’re told their attitude is too negative, or... read more
Feb 10, 2014 | General Posts
I belong to some Ehlers-Danlos Syndrome groups on Facebook, and they can be a fantastic resource for information. I wouldn’t know half as much about this complex condition if I didn’t have that connection to others living with it. Today I found out just how powerful groups such as these can be. It started when a member posted a video of a lady on YouTube called “My Naked Protest.” In the video a lady called Kateryna sits in her chair, naked – and explains that she has been left without care for about a month – and cannot look after herself. She is now covered in pressure sores and rashes, and doesn’t have any pain medication for her Ehlers-Danlos Syndrome. (She also has brain injuries, Autism and spinal cord injuries.) She has not been able to bathe for a month, and the last caregiver she had washed her clothes in detergent she’s highly allergic to – making her even more ill, which is why she sits there naked. She’s also now having to try and rehome her two cats – one of which is a service animal, as she can’t take care of their medical issues. Making her bed is also impossible, and the sheets are causing her agony without the right pressure relief pads on it. She explains why she has lipstick on – knowing already that people would judge her for such a thing. She had put it on a few days previously to make herself feel better, but then the carers had failed to show up as promised, so she’d been unable to wash it off.... read more
Jan 26, 2014 | Access, Wheelchair
This article was first published in the December issue of Living Well with Fibromyalgia In the next year some of you may be pondering the decision of whether or not to use a wheelchair, if you’re finding walking painful or exhausting. It’s an incredibly difficult decision, and there are often a few reasons why this hesitation happens. For some it can feel like giving in, that’s you’ve stopped fighting. It can sometimes feel like you’re sacrificing your mobility – that if you have a wheelchair you won’t push yourself walk at all anymore. There can be a stereotype that wheelchairs are for people who cannot walk at all, or just for older people. It can feel embarrassing, or like you’re making a big deal out of your situation. There are lots of valid (and some not so valid) reasons that can make that step a hard one. The main suggestion I put to people wrestling with this decision is – are you avoiding going to places because you struggle to walk around? Have you stopped going out for a walk with your family, going on a shopping trip or not even considering an evening out with friends? That’s the position I found myself in a few years ago. I was simply avoiding those activities because walking was so painful. One day someone offered to push me around a supermarket in a manual wheelchair they had available for customers. I hesitated – they were for people with disabilities! Eventually I gave it a go, and the difference it made was incredible. I could spend time looking at what I wanted,... read more
Jan 22, 2014 | Benefits, Opinion
Yesterday I had an assessment by Social Services for Direct Payments. I’d been waiting about seven months for it after being assessed as ‘Urgent’. The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need. What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not. From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more. As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all. It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there. So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves? But, back to my main point, I thought it was interesting how far she expected DLA to stretch. I currently use my DLA for an adapted car that has a hoist for my wheelchair. Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to... read more
Jan 16, 2014 | Reviews, Treatment
My mum saw the Back Nodger on This Morning a few days ago, and told me about it. The cheapest I found it for was £22.50 on Amazon compared to the £29.99 most places had it available for. I thought it looked interesting, so purchased it. It arrived today and looks… different to most other massagers! It works by targeting trigger points and allows you to put focused pressure on it. I suffer greatly from very painful trigger points, particularly in my neck, shoulders and lower back. I’ve spent some time trying it out in various tight knots. It works best on my neck, where it’s easier to move around to get the right angle. Similarly, it also does a very good job on my upper back/back of my shoulder blades, and it worked on my arms – but was much more painful than other areas. I didn’t find it at all helpful on my lower back, so I’ll stick to using a tennis ball there! All in all – I’m glad I bought it, as it works better than anything else I’ve tried for my neck – and it’s strangely addicting searching for the next painful spot to work on! It will also work nicely in conjuction with my favourite deep tissue massager by Dr Graeme that I find too strong for my neck, and hard to reach the back of my shoulders.... read more
Jan 8, 2014 | Hospitals, Treatment
I have pain all over the place, but ranking at the top of the list is my lower back. I’d previously had facet joint injections in my neck and shoulders some years ago, but they didn’t help. However, it was before I’d had an MRI (as it took around 8 years of arguing to get one) and so the consultant was ‘guessing’ at what the issues were. Later on the MRI did clearly show an area in my lower back that had degenerative lumbar disease in the facet joints, arthritis, and others issues. It made a much better target for injections than anywhere else, so I thought it was worth a try. It took another few years of me arguing for them (nothing ever just seems to just happen on the NHS!) After getting nowhere locally, my Ehlers-Danlos specialist at the Royal National Orthopaedic Hospital at Stanmore sent me to see her Pain Management college, who gave me the go-ahead for bilateral lumbar facet joints at L4/L5 and L5/S1 (so four in total). A few days passed after being told I could have them and suddenly I thought – what the hell am I doing fighting to have needles put into my spine?! I was sedated during my previous injections, but I did have some memories of the procedure. I remember my consciousness kind of returning and thinking ‘please stop now.’ I was later told the sedation didn’t actually knock you out, but simply wiped your memory – and that you would be aware of what was happening as they did it. This memory built up in my mind... 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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