Being faced suddenly with a disability can be a daunting experience but there are things that can help.
Nearly three years ago now I was admitted to hospital after becoming suddenly paralysed for apparently no reason. Over the two weeks in hospital with treatment and physio I regained some senses and learned to walk a little. When your nervous system gives up on you no longer have communication between your brain and the rest of your body. Putting one foot in front of the other becomes a confusing task.
When it was time for me to come home they would not let me go until they knew my home was safe enough. That meant that someone had to come out and visit my home and then state what aids I would need to be able to get around once home. Despite this being horrifying at the time (‘I’m not using a zimmer frame, What do you think I am, and old lady?’) Nearly three years on I have found these aids invaluable for my safety, my sanity and my independence.
So what were these aids? First up was the stairs, we had a fancy banister on one side but I would now need two, so a second handrail was fitted. The second rail covers every part of the left hand site of the stairs, which is the wall side. I also needed to get around so I was provided with rollator frames for both downstairs and upstairs. These are basically your normal zimmer frames but with wheels on the front so you can push them rather than lift them while walking. I called mine Zelda1 and Zelda2. I now only use a Zelda if I’m feeling really unwell, I tend to use my walking sticks more.
Then there was the bathroom. Thankfully we have a low access shower in one of our bathrooms so I was provided with a chair to sit on while showering. It’s not exactly the best way to shower so I prefer to use a bar instead and stand. My dream is to have a proper wet room, I’m sure the kids would like one too as when they shower most of the water ends up on the floor rather than in the shower basin. Around the toilets we have hand rails, they can be moved but I’m thinking of replacing them with drop down rails which are less obtrusive. I know I’m disabled and appreciate the aids, but it would be nicer for guests not to have to put up with them too.
In the kitchen I have a stool. It’s high enough for me to reach the worktop, cooker and sink, but it doesn’t move around so I only sit if I’m tired or can’t stand anymore. It’s handy for when I’m chopping up vegetables or mixing a cake, but I have to make sure I have everything in my reach. My favourite kitchen gadget is my trolley. It has two trays and is on wheels, I can push it around and carry twice as much as usual, probably twice as much as you. Not only is it useful but it’s a walking aid as well! I can use it to cart things around the kitchen, or move things from the kitchen to the living room and vice versa. I think every home should have one and I think it’s looks the least like a disability aid.
I don’t walk much outside, basically because I can’t. Uneven surfaces are almost impossible for me, even with walking aids. I can’t walk on slopes either ascending or descending. And I can’t walk more than a few metres without freezing. If I am familiar with a place I will walk a little with my sticks or crutches, but I am so, so slow. Honestly a tortoise would be quicker, or maybe even a snail.
So, I have a wheelchair, a power chair in fact which is now a little battered and bruised after our car accident. At first I had a manual chair but I didn’t have the upper body strength to push myself far and had to depend on someone to push me. It’s not a nice experience, particularly if you have someone who has been a parent push you, because they tend to treat a wheelchair like a pushchair. When they stop to speak to someone they’ll push you past so they are talking behind your back. Or in a shop you’ll end up being pushed passed the cashier so you can’t interact with them.
A power chair gives you back some more independence, you are in control again. I don’t know what I’d do without mine. At first I thought I would get better and that I would only need the wheelchair for a short while, but now I have little hope of ever being able to walk again so I tend to look at wheelchairs like someone would look at cars. There is always something better I crave. For the time being though, I have to be satisfied and as long as I can get from A to B then I’m happy. Sometimes getting from A to B is not easy and it’s easy to start thinking that it’s better not to go out at all, but then I think of all the wheelchair users that have been in their chairs all their lives and count my blessings.
And So to Bed
So far I don’t have too many aids at bedtime. All I have is a frame attached to the bed, kind of like the ones you get your toddler to stop them falling out. But mine is metal and I mostly use it to grab on to when I want to move around or get out of bed.
Sometimes I still find it hard to believe that I am disabled, especially as it happened so suddenly and without being in an accident. I have Stiff Person Syndrome which affects around one person in every million world wide. My type of Stiff person also comes with a few extra surprises, Progressive Enchephamyelitis with Rigidity and Myoclonus, or PERM for short. On October 25th it is the Stiff Person Syndrome awareness day. It’s important to raise awareness, as sufferers we are often faced with blank faces when trying to explain to any medics we encounter what is wrong with us. There is little research being done, and no-one knows the best way to treat us. With awareness we hope to change this and give future generations the chance of proper treatment or even a cure.
This is a collaborative post but all words, thoughts and opinions are entirely my own.