In September it will be six years since I was relatively fit and pain free. Most of my EDS symptoms came on fairly suddenly. It took a long time to finally be diagnosed. At first I struggled on.
After much reasoning with myself and several falls, I decided the safest thing was to start using a walking stick. Of course this didn’t make me feel good. I had been conditioned into thinking only the elderly used walking sticks. This is a total fallacy, but it took a long time to accept it. The choice was very much about my safety.
When I discovered that I could get funky fashionable and functional walking sticks that were more…me! I felt a lot more comfortable about using them. But after a few months my walking got worse. The falls became more frequent. It looked like a wheelchair or a mobility scooter was my only option.
Choosing to use a wheelchair or mobility scooter on a part-time basis can be a very difficult decision. You can feel resistance from both yourself and those around you. In some ways it feels like you are giving up part of your independence. For me, it took losing the ability to do so many everyday activities that I’d become pretty much housebound, before I took the plunge and decided I needed to use a wheelchair. I did struggle with my new identity as a part-time wheelchair user to start with. As someone who was fiercely independent it felt like my options were suddenly narrowed.
My first experience of wheelchair services (which can be accessed through your GP) involved me receiving a chair I couldn’t push myself. I had to finance a more suitable chair myself, and the whole experience made me feel very awkward. Things have since changed, but services are still stretched and underfunded. I later found more active chairs can be easier to propel. But it can take time to get used to these kind of chairs. They aren’t always available through wheelchair services for part time users. I first felt like I wasn’t worthy of having a chair, being a part time user. Even though I could barely walk to the car from the front door some days.
When I was dating, before I met my now fiancé, I used to try and get away without having to use my wheelchair, even though I would pay for it for days afterwards, or make excuses of why I couldn’t go to another bar. I would push my limits just to try and seem “normal”. In the end I gave up this pretence and just tried to be me. And if that meant using a wheelchair or a scooter then I did it. But it wasn’t an overnight process.
Remember, a wheelchair is meant to enable you. It should allow you to do things that you used to do – even if this means that you need to modify how or where you do them. A friend of mine used to go bowling at least once a week, had their own shoes, their own ball and a shirt to match them both! But when he needed to start using a chair part time he decided it was best to find somewhere more accessible that wasn’t up several flights of stairs. When I go out, I have to be a little more choosy about where I go, and check access beforehand. But on the whole, I have found there to be so many more options available to me now I use a wheelchair than I would have had when I was struggling without before.
When you’re choosing to a new wheelchair or scooter it’s worth bearing these things in mind –
- What will you use it for? Is it just for occasional days out or will you be using it all the time out of the house? What activities will you be doing? Think about the terrain as well – some chairs are better than others outside.
- Why do you want to use it? Is it due to fatigue, pain, or weakness? If due to fatigue or any upper body pain It may be worth thinking about a power add on, electric wheelchair or scooter.
- How strong are you? Do you have upper body weakness? This is something to bare in mind with propelling and lifting it. Those with upper body weakness may need electric wheelchairs as propelling may be difficult.
- How will you transport it? Can you get in on/off public transport? How about getting it in and out of your car? Will it fit in your car? Is it easy to dismantle? Is it light enough? Will you need to hoist it in and out of a car?
- Does it really enable you? Have you tried physio first? I am not at all suggesting that physio solves all ills – it doesn’t! But don’t go against the advice of professionals. If they suggest you shouldn’t use a chair ask for their reasoning. If a professional suggests an electric wheelchair for scooter, do go for something powered. Manual chairs do require a lot of physical effort, and aren’t suitable for everyone. I recommend against attendant propelled chairs. These chairs cannot be self propelled. Although they are often cheaper, they can be utterly frustrating at best!
- Have you tested the chair in real life circumstances? Having a quick go in a showroom is one thing, but it is often much better to try them around your local area. Many dealers will offer home demos.
- Research your choices. Once you’ve found a model you like, shop around for the best deal. Its really worth thinking overnight before investing in a wheelchair.
It can sometimes be difficult to get those around you to accept that you have a genuine need for a wheelchair some of the time. I found it hard enough to get myself to accept that I had a genuine need too! What helped me was talking to other wheelchair users. If you’re in the UK Wheely Brits is a great Facebook group which provides support and information to those who use wheelchairs and mobility scooters. Other people sometimes find the transition hard as well. It sometimes helps for them to see that the recommendation has come from a professional. What can also help is highlighting the things that using a chair enables you to do again, or do in better comfort. These might be the small things that we otherwise take for granted – like shopping, taking the dog for a walk, or doing the school run. Or much bigger plans like holidays, family days out, or taking up a para sport or hobby that you previously weren’t able to take part in.
You can’t convince everyone. It is so important that you feel comfortable about your choice and your chair or scooter. Wheelchairs and scooters can and do change people’s lives for the better. There is nothing weak about using a wheelchair, and its not giving up. Its enabling yourself to do more!