I both love and despise new things. There’s a part of me that is always excited by the potential of the new; I like shiny things and new things are always shiny; but then there’s the experienced part of me that has accumulated a mountain of firsts that never works out well. I truly hope it hasn’t made me a naysayer, just very cautiously optimistic. It’s wonderful to finally have an electric chair and I think if we can keep improving on the basics and trying new things it’ll eventually get to a usable point, but for now, it feels a little like one step forwards and six steps back and I’m scratching my head as to how to make it into a usable item that doesn’t damage or hurt me too much.
- I get to drive. Being rolled around in a manual wheelchair is not fun. It’s not luxurious, it’s not effortless and constantly having to work as a team just to get from the bed to my chair is very frustrating. The ability to control where I go, how fast I go and when I’d like to stop or turn is a very positive experience.
- No cushion: Such a basic thing that I’m very surprised it happened. It’s not possible to sit on a hard surface without being in agony, mhm, it’s not possible to sit on a soft surface with a very unstable pelvis without being in agony, but at least with some support around my hips I’m not dislocating stuff every two minutes
- No wrist or hand support near controls: The controller is affixed to the side of the chair and there is no place to rest my arm so that it’s always necessary to hold it in mid-air whilst using the controller.
- Unsuitable footrests: The footrests have a tendency to dislocate my knees no matter how we put them down. They cannot be put down before I sit down. After I’m seated, I have the choice of either moving my feet back and then in a twisted and bend motion popping them up on the rests which also pops out my kneecaps or I can try and raise my legs high enough so that they can be swung in place, which in turn dislocate hips, knees, ankles in any combination; or I can move my feet forward/have them supported by the person flipping the feet down, which is very awkward, still require my joints to bend at odd angles and still dislocate things.
- No arm support to assist getting up / sitting down: I have the same problem with the current manual wheelchair and I’m not sure it’s a solvable one, but having a more ergonomic wheelchair in general might make it easier.
- Lack of support: There is no back support, no neck or head support, no arm, hip or leg support and without it, joints are dislocated within a few minutes of use. Alternatively, repetitive use during the day reduces the amount of time to run into problems. I’ve tried it out three times now and each time, it takes half the time to run into issues. I’m a little scared what I’m going to feel like by the end of the first day.
- Sluggish controls: The joystick control is rather problematic. I cannot use the controller without a brace and I cannot use it with a night time splint. So in the daytime if I’m not wearing a wrist splint, I need assistance to put on the splint before I can operate it and at night, I need assistance to remove the night splint, affix the day splint and then I can use it myself. The jerky movements of the chair, which is partially due to lack of proper control from using it at an odd angle and lacking the coordination and control which I may or may not be able to develop with practice to smooth it out and partially because it’s a very basic wheelchair and it will never run very smoothly, dislocates my joints. I’m really hoping practice will make a big difference.
- On/off button: I can’t reach the on/off button as its hidden behind the large joystick
- Sloped bathroom floor: The bathroom is a wetroom and the floor is sloped at too much of an angle for the chair to work inside; the wheels are spinning in place whenever the floor surface is not even.
- Aesthetically unappealing: If it works, it works and I wouldn’t care if its a bright pink thirty year old chair. However, function tend to follow form and the design leaves as much to be desired for as the lack of usability.
As a result, independent use is simply not a possibility. This is what happens.
- Positioning wheelchair: It’s a very small house; there is no space to leave the wheelchair next to my chair or next to the bed, so someone else has to fetch it from across the room and park it next to me.
- Transfer: I need assistance to sit down without dislocating joints in the process and with the lack of support, that’s not even a good guarantee.
- Footrests: The footrests have to be manually flipped down awkwardly by someone else, another dislocation.
- Sit down: Unsupported in the chair, it doesn’t take long even when completely stationary to start dislocating various joints for which I then need help to relocate.
- Turn on: I need someone else to do this for me as I cannot reach the button hidden behind the joystick.
- Prepare to drive: I need help putting on the wrist splint.
- Drive: Finally, something I can do myself, but unfortunately, still need assistance very close by to help putting joints back in.
Its an indoor wheelchair only which means I am effectively only using it to travel between my chair in the lounge, the bed, the loo/shower in a small bungalow. Except it doesn’t do the bathroom, so bed-chair-bed. The biggest frustration? It’s not providing my with any additional independence, which I was really hoping that it would. On top of that, it doesn’t do the bathroom, so I still need the manual wheelchair pushed by someone else for that. Adding insult to injury, travelling from the chair to the bed takes 5-10 minutes going through step one two seven, excluding any time it takes to reduce whichever joints dislocated in the process. It takes Chris 7 seconds to do the same thing. Yes, it’s easier and safer than attempting to walk it; yes it’s great to have at least a sense of independence in where I am going, but no, it doesn’t really improve much of anything. I didn’t expect it to, it’s step one in what will most likely be a very long process and the first step doesn’t usually show much of an improvement at all. It’s a starting point and that’s fine, if a little disappointing.
Trying new things are both fun and horrible. Three goes and I feel even more like a train wreck than I did after getting up this morning after getting only two to three hours of sleep. It is frustrating to run into a long list of obstacles of which each will time and effort to overcome, but it’s also quite a lot of fun to zip around the house on my own steam, even if it is with joints in complete disarray. Some things are just worth the pain.