This is one of those blogs that is somehow already written out perfectly in my head, but has seemed for ever now, impossible to actually get written down anywhere. I know what I want to say, and I know what I think, but I’m finding it very difficult to write any of it coherently, or even meaningfully. So much so that I have written, and re-written this last paragraph four times now. Weirdly it’s something I think I need to write more of, and I’m certainly being encouraged to do so by my daughter (you’ll see why).
So, here goes.
Disability. No one chooses it. No one finds it easy. These are all obvious things, and yet I have had such issues with it, that it can often consume days trying to work out where I went wrong, and how and when I might fix it. I have not adjusted to it in any real sense of the word.
I hate being in a wheelchair. There, I said it.
Now that’s not to say that I don’t welcome the ability to move about in it, because I do. Since having it, it has vastly improved the four or so steps worth of distance I might be able to take in a day, to being able to wheel myself about, and to be wheeled about, vast distances. My children and I take long ‘walks’, taking photos and chatting, generally revitalising our mental health, and it’s way more than I was able to do as my health declined and I couldn’t get out of bed. It’s right to be proud of who you are in a wheelchair, and disabled people should be seen. Visibly and powerfully often.
At least I am outside a little more now too, I know, I know!
But… While the wheelchair has bridged that gap between being bed bound, and going outside in the fresh air, it’s very difficult for me to not be able to take that extra step (if you’ll pardon the pun), to be active as I once was. Previously I was someone who worked outside before I became ill, I exercised outside, I took pride in the amount of times I’d climbed certain mountains, I loved cycling, swimming and more. I wore no shoes outside anywhere if I could get away with it.
Now, inside I’m sat at my desk, or sat on the sofa. We do projects, sure, and I love them, but if anything heavy needs doing, my daughter does it instead. I cannot put my decades of skills to full use. If we are actually outside, and I get stuck in my chair, I need to be helped and rescued. I’ve even had to change how often I shoot photographs of planes because I cannot pan with them to take the shot – at least not reliably or without pain. Instead now I have to do more videography because a blur in a video will be less easily noticed.
It’s frustrating at best, but to top it off, I often then suffer with fatigue, and even more crippling pain. If I make an effort to go out and take images or video, if we decide to make a robot, or even if I just get into, or out of my wheelchair too many times in a day (into a car perhaps), then I suffer with extended tiredness as a result. I could write an equation, I’m sure, about the directly proportional amount of days I need to rest after exerting even a minimal amount of effort. Orders of magnitude come to mind.
My very incoherent point is that my brain is still vastly active. I design things in my head that I cannot manifest in the real world, and I have to watch legions of other maker friends succeeding and flourishing. It’s frustrating.
I know, I know it sounds like whining, but it really is. It’s a mourning of who I was, and where I was aiming to be.
Being someone with limited mobility, severe chronic pain, and crushing breathing issues as well as someone who has effectively shielded for two years, but is equally someone who wants to get back up Yr Wyddfa / Mt. Snowdon, swim in the sea, play music in a band again, and build turbocharged engines is a battle I face daily.
I’d like to not be ignored by people. You would not believe the amount of people who maybe come to clean my windows, come to read a meter, check the boiler, meet us in the street, or even see us after I have had discussions with them via email, who then talk to my daughter pushing me, instead of me. As though I’m not capable of speaking to them.
Not being able to get into certain shops is also a weird issue I’d have thought was sorted out by now. Gladly, some of the shops that don’t have level access for me, will come and put a ramp out. Our local community cinema, and our opticians are two such great places, but there are still literally post offices in North Wales, in 2022, that I cannot enter without my daughter trying to tilt my chair back like I’m being pushed in some sort of adult buggy that needs to be bumped up the step in an infantilising fashion.
Being. Disabled. Is. Hard, and I do not cope very well with it at all.
It is vastly grim.
Of course my life is not all bad. I still design websites, and I still campaign when I can. I still learn about, and practice law when the opportunity arises and I volunteer where I can. Of course we build our army of small robots that continue to allow me to express my love of engineering on a table over my lap, I fly drones now instead of planes, and I home educate my children. We are still trying to build our little website empire that I’m hoping one day will benefit my children, and I live ever hopeful of being able to have the energy to pursue my career.
If you know me at all, or you have looked through our websites, then you will know that I have never given up. It’s not in me to give up. My gripe is that it’s getting ever harder, and requiring ever more energy, for me to try and keep going forward effectively.
Doctors and physio say I need to pace myself, and to adjust.
I don’t feel like I have a choice.
Emma