17 July 2016
I wish I could tell you we have a new house and it’s perfect. I wish I could tell you I’m back to my former energy levels and I’m back at work full time. I wish I could tell you that I am without pain. I wish I could tell you my wheelchair skills are amazing and there are no longer any obstacles between me and full independence. None of these things are true. Boooooo!
What I can tell you, though, is that Steve and I continue to look for new digs – expanding and exploring options all the time. We are lucky to have jobs and resources, and although the housing market in Wellington could be more friendly to us, we are not out of the game. Grateful.
I can tell you that I am working four days a week and those days are both stimulating and exhausting. That one day off in the middle is a refuge and I’m still relying on it for a mid-week recharge before going again. My memory has improved, my processing time is getting quicker and I’m learning a thing or two on a new project. Grateful.
Pain. That’s a hard one. I am off nearly all medication. I take a minute quantity of something to try to keep spasms under control (and honestly, they aren’t that bad and I would probably be fine without that tiny bit of medicine), I take panadol occasionally for aches. I do have pain in my back below my left shoulder blade that I’m on the edge of seeing a specialist about. It isn’t going away by itself (yes, I really did think it might). Considering the fall and the damage, I’m doing well in the pain department. And don’t think this is just me gritting my teeth and bearing up – I am a complete wimp, I have a drawer full of codeine at my disposal, and I have a doctor who loves to write scripts. When I do have pain, I just find it completely unfair. In my mind, the further I get from the accident (in time), the better I should feel. That should be the deal. New and different aches, pains, nerve dramas, etc are completely unwelcome and make me feel like I’m being persecuted. Not grateful.
I have a fancy little wheel called SmartDrive that attaches to my axle. It is battery powered and, like a powered bicycle, it senses my effort to propel and adds to it. I wear a little wristband that has a blue tooth connection to the SmartDrive, so I can turn it on and completely off. The rest of the control is up to how hard I push. I think it has about 3 gears or speeds. If I need to turn it off quickly, I gently tap my wrist against the wheel of my chair, and the SmartDrive stops. It has sufficient oomph to get me up some pretty steep Wellington hills, and most importantly, can get me from a dead stop into motion when I cross a road (you wouldn’t notice without being in a chair or on a bike, but at a road crossing, the sidewalk ramps down to the gutter and then the street ramps back up toward the centre of the road, then ramps down to the other side where the footpath has another ramp from the gutter up – this is shitful from a wheelchair perspective and requires special skills and a big push. Some crossings are much flatter and easier than others, of course). Here’s a little SmartDrive video from the youtubes. Grateful.
Friday and I are working better together as a team. She has slotted right in at work, and has made a lot of new two-legged friends. She is also getting much more attuned to me and where she needs to be in relation to my chair. We recently got a new harness and a new ‘leash system’ for her. The harness is specifically for pulling so that we can start to work on getting her to pull me when I just need a little boost (and I don’t have smartdrive). The ‘leash system’ is just a short leash that connects to my chair with a quick release buckle. Believe me when I tell you that I have only recently gotten to the stage of trusting her deeply enough and consistently enough to actually attach her to my wheels. She is a big, strong, willful dog, which is great when you need the combination of strength and tenacity (like pulling open a heavy door), but scary when she would rather lunge at a chihuahua than go in a straight line. Not cool, Friday. Not cool. 98% grateful.
When I’m with my PT or my OT and, in conversation, just tell them what I’m doing at work or where I went on the weekend, they are always encouraging about what I’m able to do. I have left the office by myself to meet a friend for coffee (involving a street crossing and at least one challenging ramp), I’ve been to a full day conference managing to roll there and back and negotiate a full day out (potential toilet dramas, heavy doors, things I can’t reach, etc) by myself. I’m grateful to live in a friendly city where I’m comfortable asking for help if I need it and I always feel safe. My co-workers are also pretty amazing and always there to lend a hand if I need it (or just get the hell out of the way if I appear to be doing fine). Grateful.
All of these things are helping me to be more independent. My life is not where I want it to be just yet – there are a lot of things still unsettled and a lot of things I’m not confident enough to do alone – but I’m getting there.
My hero, now and always!