Once again I have neglected to share any journals, but this time I’m not keeping secrets – I actually haven’t been writing.
I’ve been spending all my valuable spoons on trying to make it out for a daily walk with Riley. Then, because I seem to be fighting my bodies deepest needs, I’ve been doing something else like washing up, little food shops or a bit of cleaning and some safeguarding admin. I am bloody exhausted and feeling like shite every day, but I can’t seem to be able to just rest.
BUT our walks have mostly been successful, though Riley is still reactive and scared of dogs and he still tries to pull ahead on the lead. But I’m determined that I’ll get there, for now I’m just grateful that I can actually walk him at all. We go for about an hour, each morning, usually in the field.
I’m learning a lot about the issues wheelchair and pushchair users face each day. Starting with the crappy pavements, the dipped curbs that aren’t really dipped and bloody wheelie bins blocking the pavements all the time. Then there’s the entrance to the field, there are MANY, but only one allows for pushchairs and wheelchairs. This isn’t by design, people keep breaking down part of the wire fence and so if I get off and carefully push my chair over it, I’m then in the field. Getting out is much harder to push the chair, but I can just about manage it….until some dopey git parks their car right up to this exit, then leaving me with absolutely no room to get out. This isn’t just an inconvenience, I’m physically trapped in the field until they return and fuck off. And vice versa, if I arrive to a car there, parked too close, I then can’t get into the field.
This happened yesterday, so I decided to take Riley for his first ever road walk. What I discovered was actually there is a lot of issues with pavements and curbs, which puts wheelchair users into the very dangerous position of having to go in the road to find the next dipped curb when trying to cross the road in a little estate. The kind of off shoot roads. Does that make sense? Like you have the main road through the estate and the little offshoots, and I try to cross the offshoots, following the main road, but one side will have a dipped curb and the other side won’t. So then I have to make sure it’s clear, as far as I can see, and enter the main road to get to the next dipped curb which is usually for someone’s drive way.
It’s the little things that really get in the way though. If someone’s car over hangs the pavement from their drive, then one side of my chair ends up off the curb. But I can’t just turn my chair slightly to remount the pavement, because the curbs aren’t full dropped. No, I have to then do a fucking circle in the middle of the road to then mount the curb head on. And wheelie bins cause the same problem.
Then there’s the people who have bushes lining their drive, if they’re not trimmed properly, or worse – just left to grow wild – then they take up too much of the pavement for me and Riley to pass. Or even just me to pass. So once again, into the road I have to go, around the parked cars, until I find the next dropped curb.
It’s a hell of a learning experience, and I have to admit that much of my complaints are things I’d have never considered prior to being disabled. I don’t know any wheelchair users personally, so I never knew they were problems. I know I have previously parked with my car sticking out the drive way, and put the bins on the pavement so they don’t block the driveway. But in doing so, I prevent people using mobility aids and pushchairs from safely navigating the village.
It’s a very eye opening experience, but what I have learned is that the people in my village are wonderful and lovely. They stop to talk, often not even mentioning the chair or my health, and others say how wonderful it is to not just see me out and about but to see me truly smiling again when I am.
I hope I can work out what to do with these experiences and knowledge. For now, I go out armed with little notes to pop on dustbins, polite ones I might add, just to let people know that it prevents others being able to safely use the pavements. It’s not much, and I never thought I’d be the sort of person to put notes to neighbours, but so far I’ve had no complaints and I’m seeing less bins on pavements and less bins being left out for days after collections.
When I feel like I have the energy to do so, I think my next battle will be with the council. Not having safe crossing points and having pavements so damn broken that I feel like I’m on a rollercoaster that might tip my chair, it’s a problem and I know I’m not the only one in my village facing it. There is a chap on my street, whose carers take him for a walk in his chair daily. But whenever I see them, they’re pushing him in the middle of the road because the pavements are just not wheelchair friendly. They’re too messed up, too blocked and for someone manually pushing a chair I can imagine they’re hard bloody work.
However, I currently have limited energy and my next real goal is to remember to charge my chair when I get back from a walk. Today I had to make a hasty retreat hone when it started telling me, every minute, that the battery was low. Oops!
As a quick update, seeing as we’re all here, there’s very little to say. My energy is low, I have a constant pressure in my head that’s driving me crazy and my body is craving something and I have no idea how to figure out what. I’m guessing it’s likely something that’s missing from my diet with this low histamine rubbish, perhaps red meat. So we’re having steak tomorrow to find out. My inflammation is quite high, which is causing my Hemicrania to be worse and my nerve pain to be a little sharper when it kicks in. My sole focus is on walking Riley and looking after myself, and I don’t feel like I’m sufficiently looking after myself given how I feel. The fatigue is also likely as a result of the walks, being up and about causing adrenaline, which inevitably means a crash after it ebbs away. My POTS is less manageable too with the hotter weather and I keep having periods of lower ox sats which results in excessive yawning. But as usual, I put all these things to the back burner as a case of “just another thing” to save the stress and hassle of going to see the doctors to get absolutely nowhere. So I’ll keep focusing on trying to find what my body needs, getting out each day for a freeing walk in the breeze with Riley and trying to rest a little better than I am!
