Sep 23, 2013 | Access
How many times have you heard a story of a wheelchair user being refused access to a bus, and left waiting in the cold, snow or rain? It happens all the time. I’ve heard reports of wheelchair users being left stranded for hours, being told they can’t get on the last bus of the night and even of one driver telling the other passengers that if they allowed an electric wheelchair onboard then it might blow up. Despite these many cases, the bus companies often seem indifferent. I’ve had quite a bit of experience of this myself as chair of an Access Group – over the years I’ve had numerous complaints from members about local buses, and the letters back from the bus companies always follow the same formula. An apology, and a promise that drivers are trained in disability awareness. When we’re tried to follow up on this – and ask whether we could perhaps run a training session, or even just see the materials that they’re being trained on, but we’ve been met with radio silence. I was very interested to see that Unity Law, a disability specialist firm based in Sheffield had taken on the case of Doug Paulley, a wheelchair user who was unable to get on a First Bus when one of their drivers wouldn’t make a parent with a pushchair move out of the space. Having contacted them in the past about similar issues and having not got anywhere, he decided to he contacted Unity to see what could be done legally. The good news is that today a... read more
Sep 15, 2013 | Daily Life
If you have a chronic illness, then you often have a lot of days in bed, or stranded on the sofa. I’ve been having a lot of those lately, and so I’ve been looking for new TV shows to watch. I’m not looking for shows that need any brainpower – just ones I can marathon and enjoy even if I fall asleep halfway through! Here’s a rundown of some easy-watch TV I’ve been enjoying lately. For some reason, I think all these shows are on TLC. It’s channel 125 on Sky, and 167 on Virgin in the UK if you want to check them out. Sister Wives I’ve been watching this one for quite some time, and am excited it’s just starting in the UK. It follows a Mormon family that consists of a husband called Kody Brown, his three wives Meri, Janelle and Christine, and their 13 children. The show begins with Kody dating Robyn, and her then joining the Brown family as his fourth wife. The show is a fascinating look at polygamy and all the benefits and downsides. Every wife is completely different, and the show doesn’t shy away from showing the jealously between the wives and the long transition both the wives and the children go through to accept Robyn and her three children. I also enjoy the interviews with the older children – who have mixed views on polygamy themselves. This one is my favourite. Watch this for: Family dynamics, a peek into a different world, lots of interesting background information slowly revealed and lots of highs and lows. Dance Moms I have a... read more
Aug 27, 2013 | Daily Life
I was settling down to go to sleep the other night, and putting my joints in the right positions – and it made me think about how much effort I have to go to at night to get it right. Most people jump into bed, lay in whatever their favourite comfortable position is and go to sleep. But for me, a lot of thought has to go into it, and it still often goes horribly wrong! First of all it’s all about placement. I have to make sure no joints have too much pressure on them – particularly my hips, knees and shoulders. Sometimes it’s a no-win situation, for example I have to sleep on my side, and if I lay with my shoulder underneath me then the pain builds. However, if I pull my shoulder forward to take the pressure off – it’s likely to subluxate or go into spasm. Many of my joints have to be bent – particularly my elbows and knees, otherwise they will lock in hyperextension (this is when the joint goes past its normal range of movement) and ‘freezes’ in place. When this happens I have to warm the joint up, and then slowly, and very painfully force it out of hyperextension and fold it back into position. It will usually throb with pain sometime after this. However, other joints must not be bent, including wrists, and fingers, otherwise oddly they too will freeze in this position. Last night I ended up in a lot of pain because in my sleep the top joint of one of my fingers had bent. The pain... read more
Aug 21, 2013 | Access
Access for people with disabilities is something I’m passionate about. If there was another group of individuals in this country that were so utterly restricted from accessing shops, services, or simply going about their daily life – there would be an outcry. Yet access for disabled people is something that is still regarded with apathy, ignorance, and a lack of understanding. But I too was one of those many, many people that had no idea how poor access was in this country until I became disabled myself. The first time it really hit me how hard something I’d found so easy such a short time time ago, was a few years ago when my mobility got to the stage where I couldn’t walk around the town anymore. I signed up to Shopmobility and rented their smallest scooter in order to do some Christmas shopping. The whole trip was a disaster. Being winter, most of the shops had closed doors. It’s almost impossible to reach from the scooter to open a door, hold it and drive through – and many of the doors were very heavy. It’s also difficult to get off the scooter at every doorway to open it, and then drive through while standing and trying to hold the door! If you’re regularly having to dismount from the scooter, it very much defeats the purpose of using one to reduce pain and fatigue. So, I struggled to get into many shops – and this was while expecting to only be able to get into the larger chain stores. Many of these shops packed their aisles with displays, which... read more
Aug 15, 2013 | Access
In Britain we have pretty good disability discrimination legislation. It’s quite extensive and covers physical access, employment and more. The Disability Discrimination Act came into force in 1995 – eighteen years ago. It’s been updated and strengthened multiple times since then – in 1996, 1999, 2004 before it finally ceased to exist and was instead included in much broader legislation called the Equality Act 2010. This included seven different protected characteristics which included disability, and states that if two people with protected characteristics have conflicting needs, then the disabled persons needs comes first. However, I believe there are two particular flaws with this legislation – the first is getting companies, building owners and service providers to pay attention, fully comprehend and implement the law. The second flaw is around enforcement. I will cover this issue in the post ‘Why we’re losing the war on Disability Access.’ Access Made Easy: 1) Access is generally about common sense. This includes putting a little thought behind decisions such as the layout of shop, and quite simply treating people with disabilities like you’d wish to be treated. For example – many shops have hearing loop systems, but don’t turn them on, fix them when they break, or train staff how to use the system. If you put a blue badge space outside your shop door – don’t use it for storage instead! If you’re installing a ramp to help wheelchair users and those with mobility problems, don’t put it at the back of the building. The closer it is, the better. The law states that it’s not enough just to have an adaptation... read more
Aug 1, 2013 | Daily Life
Blue Badge parking is a fantastic invention, and makes life so much easier for people, but there are often places where there simply aren’t enough spaces for everyone. In my town – it’s at the local hospital. Parking has been an issue there for years, with the hospital regularly moving external departments to the same main site – but never increasing the parking. The worst place for this is at the wing that contains physiotherapy, the various gyms, hydrotherapy, prosthetics, etc. I always arrive early to my appointments – and it’s luck of the draw that you either catch someone leaving, or have a long wait. The way the car park is laid out there isn’t an easy way to queue up, so people dot about and just have to keep an eye on who is next in line. So today I had hydrotherapy and arrived about 20 minutes early. I waited, and waited. After about 15 minutes, a lady crossed the car park heading to her car. I pulled out, signalling to make it clear I was waiting – when a new car arrived, and rushed in, passing me. I couldn’t have pulled out further as it would have blocked the lady from leaving. I head towards the space, as he starts to back in. I beep, and wave to get his attention. He ignores me, and parks. When he gets out – I ask him why he did that. He shrugs, and said he didn’t see me. If someone doesn’t see a car in the middle of a carpark, signalling and beeping – they shouldn’t be driving.... read more
Jul 26, 2013 | Doctors
A good GP is like gold dust. It’s not that I believe the vast majority of doctors are bad doctors, it’s just that I think many have a specific attitude to healthcare. They want to see a patient, diagnose the problem, hand over a prescription and see them in a few years time for another issue. However, when someone has a chronic illness – they’re obviously way past that point. There are no antibiotics for us, no treatment that will make it go away – and I think many doctors find that frustrating. It takes a special kind of doctor to remain supportive and helpful in the long-term. To not give up as soon as one medication fails, or a treatment doesn’t work as suspected, or a medication helps one symptom – but creates another which now needs treating. I have a check list of some of the qualities I like in a GP: * A good doctor doesn’t roll their eyes when they ask how they can help, and you pull out a list. A good doctor realises for a chronically ill patient each symptom is connected, and shouldn’t be restricted into only discussing one problem at a time. * A good doctor realises every symptom has significance. For example, the medication I am on for pain relief has unfortunately caused me to have acne. I find this really difficult, and I don’t want it dismissed as there are more ‘important’ issues. * A good doctor doesn’t get frustrated when you come in clutching the latest breakthrough study, but reads it and explains whether it’s possible in my... read more
Jul 26, 2013 | Opinion
I am currently going through the awful process of claiming Employment and Support Allowance. This is the ‘unable-to-work’ disability benefit that replaced Incapacity Benefit in the last couple of years. To put it mildly – it’s a stressful process. When you have a disability, you try to focus on the things you can do. You think about alternatives, or ways in which you can take part. However, ESA turns all that on its head – and you have to detail all the things you can’t do. It’s a depressing process. It’s also a long one. To claim the benefit you begin by being signed off sick by your GP, once your work has ended. You get put onto an assessment rate. After approx 13 weeks you’re sent a form called the ESA50. It’s a lengthy form, very repetitive – where you have to justify such criteria as why you would struggle to pick up an empty cardboard box repeatedly, safely and reliably. You’re expected to put medical evidence together with this form. When the system was set up – the Department of Work and Pensions or ATOS were supposed to request medical evidence on your behalf, but they did so on very few cases. Therefore claimants were being turned down for a lack of medical evidence! The claimant would then have to gather the medical evidence they thought had already been asked for in order to appeal and win the case – causing unnecessary stress, and time and tax payers money to be wasted. So many claimants began to ask their doctors for evidence upfront. I’ve had two experiences... read more
Jul 20, 2013 | Daily Life
It’s something that often fills those of us with chronic illnesses with dread. When getting out of bed is difficult, the concept of exercise can seem unobtainable. I have tried various things over the years, but always found it difficult to do anything reliably and work at the same time. It’s something doctors put a lot of emphasis on. One consultant even said I should be aiming at six periods of exercise a day, and in return I wanted to laugh in his face. There is no denying the benefits of exercise. It keeps your joints mobile, it stops muscles atrophying when you have limited mobility, it can help control weight and it can do wonders for your mental health and sense of achievement. But there are some significant difficulties surrounding exercise as well. I recently had to stop working. Whether its permanent or temporary, I don’t know but I did want to create a positive out of the situation and use any small gains in fatigue levels to take part in some form of exercise. At least – my form of exercise. I’m never going to be able to lift weights, or jump on a running machine, but I do want to keep my joints as mobile as possible, using gentle methods. First, I had to be realistic. Any attempts to join any class in the outside world, even at beginners level, has met with disaster. So the most obvious solution was to seek classes aimed at people with disabilities. The first class I tried was one run at the local university by a sports science professor. He... read more
Apr 2, 2013 | Coping Methods
I’m not a morning person. At all. So I find it slightly…irritating, I have to get up early in order to go to the relaxation sessions I’ve been having over the last few weeks. I don’t find that relaxing at all! Relaxation sessions is one of the treatments the local pain clinic offers. To be fair – the clinic doesn’t offer that much, but the relaxation sessions are one of the handful of treatments they do. They’re run by a friendly nurse, in a room that hasn’t changed in the ten years I’ve been going to the pain clinic, the chairs are uncomfortable, and it’s kind of cold. But they do offer pillows, of which I usually take about five just to get to basic levels of the chair not completely sucking. Relaxation is a funny one. I don’t tend to do it at home, because if I do I just fall asleep. The one time I remember it being successfully done at home was on a lovely summer day, and I dragged my yoga mat outside and lay listening to the peace and quiet, the sun warming me up and my laptop playing the free CD the pain clinic gives at the end of the sessions. I do hope to do it again this summer, but generally I’m always too busy doing… something, and don’t make time for relaxation like I should. When you have chronic pain, it’s generally thought the natural fight or flight response to the body has gone a bit haywire, and it’s constantly in fight mode. You’re naturally stressed, your nerves are constantly firing in... 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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