I've had CRPS over nine years now, and I've lost count of the number of battles we've had to fight during that time. Anything from getting the benefits I'm entitled to, securing ill-health retirement through to being able to take a full part in the very limited activities my condition grudgingly allows me to do.
It's hard enough getting through each day, making the most of what seems to have become an ever decreasing quality of life. Mentally you try and stay positive, regardless of what life throws at you but there are times when it all becomes too much. I'm going through one of those phases right now. The pain and exhaustion are too much, I'm losing entire days to sleep and feeling frustrated, angry and demoralised about the situation I find myself in. On various levels.
The problem with being disabled is that it isn't just the physical and mental effects of your condition you have to cope with. It's trying to live in a world that's set up for the able-bodied. As a wheelchair user I live in a world where there are barriers everywhere, nothing is easy and spontaneity is impossible.
Take something as simple as getting about. If we didn't have our own car, travelling anywhere would be a huge challenge, largely insurmountable. Public transport isn't an option. I can't catch a train locally as there's no wheelchair access to platforms at my local railway station. There isn't a bus stop close enough to be practical. No idea where they go either and could I access them anyway? We could use a taxi service but I dread to think how much that would cost. How many wheelchair accessible taxis are there out there? No, your own transport is essential. Particularly when you need as much help as I do.
Of course getting somewhere is just the first step. Can you actually get in? Do they have wheelchair access? Are the rooms big enough to allow a wheelchair like mine to get in and close the door? Take my dentist as an example. It's like an obstacle course trying to get into the consulting room, Eric has to manhandle me around to try and get round the tight corners. It's totally unsatisfactory to be honest and an able-bodied person wouldn't put up to with it and most likely kick up a fuss so that something is done. As a disabled person we are expected to be grateful that they attempt to accommodate us at all. God forbid we should complain. Or challenge the natural order.
The same goes for shopping. We can only go to covered shopping centres because paving slabs have a tendency to be uneven, and each bump induces more pain. This leaves us with Lakeside, which isn't the most inspiring place but at least they used to have places where you could get a coffee and a sandwich/cake and sit at a table, having rearranged the furniture so I can reach the table. Since the refurbishment there is now nowhere in the Food Court that I can can sit at easily. Fixed benches, or seating areas that are so small I couldn't get into them anyway. There's no point complaining as there's nothing they can do. We eventually ended up in Costa Coffee as that was the best solution we could find. It may seem pathetic but that's always the highlight of the trip for me, having a coffee and a cake. A treat. Is it too much to ask that we can just go and do that like everyone else? Unfortunately not...
Inevitably you end up not going out because it isn't worth the pain and payback that follows. So then it's just medical appointments that come up in your diary that give an opportunity to leave the house. At least hospitals generally have decent disabled access. Why should I have to give up on going out just because I'm in a wheelchair. I'm sure able-bodied people are thinking 'it can't be that bad, she's just making out that it's worse than it is'. I wish that were true. But other disabled users will back me up. For heaven's sake the assessments for benefits are often held in buildings with no proper access. How can that possibly be right? So you go for an assessment but then can't get in to have it. And you'll probably receive a sanction to rub salt in the wound. Madness isn't it? I face similar issues every time we try and go somewhere.
Archery is massively important, being the only activity I can do in my wheelchair with my legs up. It is good for me both physically and mentally. I look forward to each session and have thoroughly enjoyed taking part in my first competitions indoors. I want to do more, especially as we move into the outdoor season. Of course I can't do many because I simply couldn't cope with it. The recovery time is long and the payback immense. That isn't going to stop me, but even here things aren't simple.
Bizarrely, in the archery world I'm not classed as disabled. CRPS isn't on the list of conditions they use to determine disability so classification is a non-starter. So I can't take part in disabled competitions. My only option is to shoot against able-bodied archers. No problem you'd think? I'm at a disadvantage, but at least in the rules it states that you can use a wheelchair and stay on the shooting line throughout a competition. Guess what? My wheelchair is too long so I fall outside the scope of that too. So that rules me out of shooting in many able-bodied competitions as well.
It seems for the purposes of archery I'm too disabled to be classed as disabled. Fortunately the governing body is issuing me with a card that means I can shoot as long as the club organising the shoot can accommodate me and my chair. I'm extremely grateful that they are prepared to do this for me, but should it even be necessary? A wheelchair is a wheelchair regardless of length. A condition that renders you unable to walk more than a few feet even if supported should surely qualify you for disabled status?
It would be so easy to give up, faced with an uphill struggle to do anything or go anywhere. A world that in many ways only pays lip service to the concept of disabled access, and equal rights for the disabled. Sadly you come across discrimination everywhere. In the most unlikely of places. All I can do is battle on, fight my corner and make the best of it. After all giving up just isn't me is it?