by The Chronic Chronicles | Aug 27, 2013 | Daily Life
In my next life I shall be a cat who sleeps anywhere.
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 in just that one tiny joint woke me up and kept me awake for some time!
Most importantly – with any joint, they cannot get left in the same position for too long, or I’ll be in for a world of pain in the morning. So I have to wake up regularly to turn over, and move each joint in turn. Often a joint gets locked up – usually one of my hips – and I have to turn over and try and drag it over with me which is more difficult than it sounds.
In addition, as anyone that knows me will have seen and heard – I’m always having to crack my neck. This continues throughout the night – with the pressure in the joint building up until it wakes me, and I have to crack it all out which you can’t do very well lying down.
Sometimes trying to solve one issue causes another. For example putting a cushion between my knees help eases my lower back pain slightly. However, on day three of using this cushion I get absolutely horrendous hip pain that leaves me unable to walk.
No matter how carefully I try and keep in the right positions, my fidgeting continues into my sleep and that causes a lot of problems. I cannot sleep on my back, at all – but sometimes this happens, and in return I wake up screaming with burning nerve pain shooting down my leg. I also frequently get cramps, or muscle spasms that make me jump awake.
This is just a normal night – often I have an injury, or a flare up in a specific joint that throws everything out.
So you wonder why I’m tired? People with Ehlers-Danlos Syndrome struggle to get into the final REM restorative stages of sleep. We also tend to wake up naturally hundreds of times a night. On top of that, I suffer from insomnia – and often don’t get to sleep at all until 6:00am – 7:00am.
So no, I don’t do mornings.
Fellow EDSers – do you relate?
by The Chronic Chronicles | 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.
A typical sight on the High Street – a step that would stop a wheelchair user gaining access, that could easily by solved with a portable ramp.
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 made it hard to get round. It meant I had to regularly get off the scooter to move displays out the way in order to get through.
On top of this many shops had steps to get into them, or steps in the middle of the shop to another level that I hadn’t even thought twice about before. Tills were difficult to get to, with many having tight pathways to follow, made all the more difficult by the excess of shoppers.
I also found a lack of dropped kerbs around the town centre, with market stalls or delivery vans across many of those that were there, meaning I often had to go a great distance out of my way to take a route I needed to go, which meant between struggling to get round every shop, having to take longer routes to avoid steps or to find dropped kerbs, in addition to the struggle with doors – the whole trip took so much longer than it would normally have done.
An example of a “dropped-kerb” that made my wheelchair slam against it.
The final straw came in WH Smith. It was the final shop I needed to go to. I was pretty much shaking in pain and exhaustion before I even went in, but I immediately found myself stuck multiple times by narrow aisles and poor placement of displays – even worse than any other shop I’d been in, and then got completely trapped in a terrible queuing system. While trying to manoeuvre to free myself, some shopping fell off the scooter. In total exhaustion I got down on the floor to try and pick the items up, but shoppers continued stepping over me to join the queue – making me feel invisible and worthless. Staff watched me, but ignored the whole issue. Another shopper called out to a member of staff, asking them to help – but she simply stood watching. Finally back on the scooter, the only way I could see out was to drive into a display and knock it, which I did – knowing the comments of ‘terrible driver’ I was getting. Finally I reached the till to find it too high, and the PIN machine locked into position. It may be funny to look back on, but this was my first outing using a scooter as someone in their early twenties, gutted at having to be using one anyway – and left mortified by the whole experience (and in agony!). That embarrassment soon turned into anger. Why an earth hadn’t a large national shop like WH Smith achieved the most basic level of accessibility?
I was so upset I wanted to do something, so I found my town had a disability access group, and wrote to them asking for their help. Shortly afterwards I joined the group, and after a lot of nagging, complaining and meetings I was thrilled when WH Smith made a number of changes that made it much easier for people with disabilities to access their store. However, a year later they changed their shop layout again and changed their tills to a self-checkout system that people in wheelchairs couldn’t reach, undoing all our hard work. It quickly became clear to me that access was a big issue, and both achieving and maintaining it even harder.
This shop has a wide pavement outside, giving plenty of room for a ramp, but has chosen not to provide one.
In time I became the Chair of the access group but sadly we are extremely limited in what we can do to improve physical access. Getting change isn’t easy. Many shop owners simply ignore our requests, tell us it’s down to the council to provide ramps, or tell us they will make changes which then never appear. Most of the time I feel the group just bangs our head against a brick wall – but when a positive change is made it’s a great feeling.
However, the law recently changed to make it much harder to enforce the Equality Act. After lobbying from insurance companies, the way ‘no win, no fee’ cases are funded changed so that the claimant has to pay the insurance premiums upfront. These can cost thousands – and are usually more than any damages/compensation would ever be. This has made the ability to afford to bring a disability discrimination case about only possible to the very rich, whether the issue is something relatively simple like a local shop who won’t fit a ramp – to the worst possible cases of discrimination possible.
An excellent example of wheelchair access close by the main entrance.
I’ve barely heard this issue spoken about yet, yet I’m completely horrified by this change and the damage it will cause. It now means we’re relying on simply the goodwill of shop and service owners to make changes – which in many cases simply won’t happen.
This is yet another subtle change in the system that points overwhelming to a systemic campaign against people with disabilities that continues on. But sadly – apathy and ignorance are winning this war.
For more on access, try the post Disability access made easy!
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by The Chronic Chronicles | 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 – but to make sure that it’s usable.
2) Access doesn’t have to be expensive. The law asks for reasonable adjustments, and does make allowances for cost. It wouldn’t be expected that a small shop knock their entire shop down to replace it with a fully accessible one, or to install a permanent ramp. There are always ways to improve access though – such as a lightweight ramp that can be moved, a doorbell placed outside to allow people to call for help if needed, a portable hearing loop system, etc.
3) Never underestimate staff training. I have never had decent Equality and Diversity training, despite working for a range of councils, charities, universities and private businesses. It’s usually a patronising online module that tells you nothing about what it’s like to be disabled. There are lots of different kinds of disabilities out there and stereotypes attached to them. Some are harmful, some are just assumptions. Some I’ve heard just in the last week include:
• Wheelchair users cannot walk at all because their legs don’t work.
• AHDH is a fad, and is just naughty-child-syndrome.
• If someone is deaf just shout at them.
• If your child has Autism, then you should just be a parent and watch them at all times rather than expect their environment to be made safe.
• Only older people can have mobility problems.
Staff that have good training are going to lessen the chance of causing offensive, having complaints made about them – and more importantly increase the chances of meeting the needs of the customer and getting them to return again.
4) Accessible shops, or places with good customer service will get more custom. Disabled people have money to spend too. And to me – a shop that could easily make adjustments and hasn’t says to me “you are not welcome.” It’s mostly because the shops in the town centre I live in is so hard to get around I moved to mostly online shopping.
A cafe in the town centre that is inaccessible to wheelchair users
A few months ago I wanted to buy a gift for someone, and only had one day to buy it. My problem, however, was that my wheelchair was out of action. I checked online to make sure it was in stock, and headed to Homebase. The item I wanted was a plant – so I hoped if I could park outside the door, and go straight to the plant display nearest the door, I might just make it. However, I couldn’t see the plant – so I staggered over to customer service, already way past my walking limit. I explained to the lady I couldn’t stand long and couldn’t find what I wanted. She immediately brought a chair round to me without asking, then went to find the item, rang it up and called for someone to carry it out to my car for me. It seems simple, but it was so rare to be treated this way it actually brought tears to my eyes, which I know is pathetic! I wrote to thank Homebase and the lady in question and hope all their staff are like that. Next time I need to buy something gardening related – I’ll head to Homebase.
It’s important to note – most people will not complain about the step in the doorway, the packed displays, the till they can’t reach – they just won’t return.
5) New builds – get it right! While there is a certain level of understanding that it’s harder for older buildings, if you’re creating a new public building then please make an effort. The town I live in recently opened a massive shiny new art facility that cost £28 million. I was therefore incredibly disappointed they got some really basic things wrong. There was a whole list of issues – but a couple of the problems included a disabled toilet with an automatic light that turned off after a minute. So the person had to get off the toilet, and go outside into the corridor to turn it back on, or have fun in the total darkness. The second was the disabled parking was blocked off by locked bollards. In order to park, a wheelchair user had to pull up in the road, get their wheelchair out, head the 30m or so into the building, find a member of staff, wait for them to unlock it, go back to the car, put the wheelchair back, drive into the space, and get the wheelchair back out again. (For for many non-wheelchair users the distance was too far to reach the building from the road.) It’s very frustrating when such basic things are done so badly.
Finally: 6) It’s the law so just do it!
The staff in this shop ignored my attempts to gain access in my wheelchair. The manager later stated no one else had complained they couldn’t gain access. But how many people didn’t even try?
In terms of access, which simple changes would make your life easier?
by The Chronic Chronicles | 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.
So I wait, and wait – my appointment time passes. There’s nothing I can do, no where else to park. Eventually another lady moves her car, and once again a massive four-by-four suddenly drives in and takes the spot. I’m furious.
Again, I ask her why? I’d been waiting half an hour, missed my appointment time – and there is a queue. She says her daughter has an appointment. Right, well no one goes to the hospital for fun? I explain I do too, and I’ve been waiting like everyone else. She then looks at me and says “It’s your problem.”
I can’t repeat what I said next.
When did common decency vanish? Everyone knows parking is difficult at this hospital, and most of the time everyone does their best to keep the system fair. It sounds like such a minor thing, but in the end I had to park on a verge, then struggle desperately to get my wheelchair out and down the kerb. My stress levels were high by the time I got to my appointment, fifteen minutes late – which then increases my pain. It just makes me not want to go the hospital anymore, as the parking situation is so ridiculous!
Credit to ralaenin
