The start of another weekend and I don’t think I have managed yet to type one complete word without hitting at least one wrong key and having to correct it. The stupid thing is, I don’t actually feel that bad this morning, I am actually so far today the closest I have felt to being myself for a long time. I woke early again today, well when I say early I mean I woke at 6:30, the bathroom curtain was open again and the light had got to me. I lay there trying to go back to sleep but with no direction I could direct my face in where there wasn’t light, I just couldn’t drop off again. I lay there until just after 7 am and then gave up, there is a point where I just start to get wound up by the fact I can’t sleep and I hit it, I also know if I stay in bed past that, I start to get a headache, so getting up is always preferable. I said yesterday that I thought I was through the worst of it, well I can say without a doubt, that I was right. This morning I am still getting short bursts of it, but when I take a few seconds to just stay still and relax, it passes and I can get on with what has to be done again. You don’t know just how glad I am to be writing that, as I couldn’t help feeling that it was going to be around for a lot longer than that. The only thing new is that the muscles in my arms that were driving me mad by tightening, are now having spells of numbness, it started last night and is still happening, but numb I can live with, tight and impossible to use, well I don’t know who could.
I really hate this time of year, if it wasn’t bad enough that the house is filled with unwanted light and heat, the TV is full of unwanted programs as well. Once again the annual problem of programs being shifted around to allow for both tennis and football, now Glastonbury has got in on the act as well. I have to say that I am not as mad about it as usual as there is now catch up TV, so when they shift all the programs I want to watch out past my bedtime, I can at least still watch them the next day. The only reason I am really mentioning this is because it is yet another sign that most people don’t give the slightest thought to those who have no choice about the time they have to go to bed and their evenings being ruined. I honestly think it should be the other way around, shift the interlopers to an obscure channel and keep the main ones doing what they do well. So OK it is a small and on the scale of it not exactly life-stopping event, but when you add up all the small things that just don’t work for those of us who aren’t fit and healthy, the world gets rather cluttered. Looking back over the years when my health was racing downwards the truth of life outside meant that in most regards I was actually housebound from the day I landed up with a walking stick, and totally so, other than work, from the day I found myself sat in a wheelchair. I know to those who are able-bodied that it may look and feel as though there are facilities for the disabled everywhere these days, but the truth of those that are there, is most look accessible, but aren’t. I lost count of the number of so-called accessible buildings I have gone to, to find once there, that either the ramps are so steep that if you don’t have an electric chair or someone to push you, there is no access, worst of all most were built after the law was in place to ensure everyone could use new buildings.
At the minute in the UK, there is a huge drive on for people to learn how to assist people with dementia, the way it is being heralded would make you think that dementia is something new and that the world is making a huge effort to adjust to it. I haven’t been diagnosed with dementia, but the damage I have to my brain has a lot of similarities, but I know without a doubt, if I went to one of the banks, or shop chains that now have stickers on their doors displaying that they are “dementia friendly”, well as long as the right people are working at that time, I would first have to explain what is wrong to get the same assistance. No one can see brain damage or dementia and trust me, the last thing I would want to do is walk up to a complete stranger and have to explain what was wrong with me. I don’t know what the answer is to making life accessible to people with invisible illnesses, but what I do know is none of us want to have to tell everyone that we have a problem and none of us want to walk around with a badge on, or anything similar, so that others are simply friendly and helpful to us. If anyone is going to be able to live a “normal life”, once diagnosed with any invisible condition, it isn’t through individual conditions being used as a way of getting companies to act on what should be something everyone in every service industry should be taught as part of their standard training.
I know that everything has to start somewhere and in this country, well this might be a start, but I am not going to hold my breath. Whatever happens, it is unlikely to affect me directly, but there are millions of us, not just in the UK, who need the help of others to just do what most do without even a thought. We already have “Disability rights”, this isn’t about rights, this is about people acting compassionately to those not as able as themselves, regardless what it is that makes them less capable. Shifting the entirety of society might be rather a tall order, but it’s what’s required, somehow, be it through courses or general education from school onwards, everyone needs to learn compassion and patience with everyone else, then maybe the disabled might stand a chance out there.
Please read my blog from 2 years ago today – 28/06/12 – Minority to Majority
For one just hour look at the world upside down, a strange request possibly, let me explain, just for today don’t just do things think about what you are doing. Take all the things you find simple throughout your day, those simple tasks like getting dressed making a cup of coffee, as you do each of these things try and do them with just one hand, or without bending a knee, or even something as small as not being……