Getting it right

No one usually phones me before 9:30, so why is it in the space of five days, I have had two calls, well before that. I wouldn’t mind generally, but on both occasions, I was sat in my wheelchair, in front of the TV eating my breakfast. One was from my friend Jake and the other from Adam and both seemed worried when I answered the phone in the only way I could, with a mouthful of food. I guess that the crunching of nuts and granola must sound like someone who is really ill. Joking apart, they once again highlighted how people now worry, if I don’t answer the phone within two rings. I don’t know what pictures form in their minds, but not answering instantly, is clearly a problem for them. I couldn’t reach the phone from where I was, as it’s on my desk, so it took me four or five rings to wheel backward, then negotiate getting out of it and reaching for the phone. When I first started using my chair, every time I left the desk I took the handset with me. After months of it, not ringing, I stopped taking it with me. Now suddenly, those who love me, worry when I don’t answer.

When I bought our phone set, about 12 years ago, I did so keeping my growing disability in mind. It had to cover several different criteria. After years of struggling with those silly little handsets provided by the mobile phone industry, I knew that it had to be big enough and chunky enough to pick up with ease. The buttons also had to be big enough to accommodate my failing dexterity, and my dwindling eyesight and it had to have a volume control that meant I could really hear with ease, all those people out there who mumble. It also had to have a hand’s free feature, one I haven’t used as yet, but I still think it will be needed eventually. It took me a lot of time and a lot of research to actually find any phone that fitted all of that, but I did, and to date, they have been great.

A phone like that is more like the second generation mobiles than today’s smartphones. Taking it anywhere with me is not the easiest thing to do, and not something I thought about when I bought it. It doesn’t fit in my dressing gown pocket and even if it did, I wouldn’t be able to get it out, when I was sat down in my wheelchair. Putting it on my lap, was a position I quickly dismissed as I spent more time trying to catch it as it slid off in one direction or another. For a while, I put it inside the top of my dressing gown, but I kept forgetting it was there, and I would stand up, sending it crashing to the ground. Not good for the phone, or me, as I then somehow had to bend over, find it and pick it up. Hard enough with my body, when it was sat at my feet, but when it slid off with speed and then vanished under some piece of furniture, the problem became huge. Putting it in the bag on the back of the chair, also had its issues, the main one being, I would forget I had put it in there. I then found myself sat back here, listening to it ringing with no memory of where I had put it.

In many ways, this is a perfect example of no matter how well you think out your future needs, there will always be an issue you don’t see. When I bought the phones, I never allowed for my being in a wheelchair and unable to reach one of the handsets within just a handful of steps. It fulfils exactly the requirements I had set out for it, but now there is a new one, that it fails on. Seeking out a mobile that would do all I am asking of it, would be almost impossible and would bring the same problems, plus others, such as me forgetting to have it charged all the time. It is the same issue as I have found over and over, gadgets and gizmos never do everything that we want them too. It is probably one of the biggest problems with all aids as well. Everything is designed for the majority, those of us with chronic illnesses are usually the minority, all too often the forgotten minority.

This morning Adam was calling just because he hadn’t seen me before he went to work. Nothing new there, but it once again highlighted that he is never going to stop worrying about me, as long as I am alone here. Just as my post yesterday showed, he worries about me all the time. Short of setting up webcams in every room, so that he can see for himself where I am and what I am doing, or having a full-time carer, something I don’t need, I quite honestly don’t think that I will ever stop him worrying. I know it just shows how much he loves me, but more than anything, I would love to be able to put his mind at rest. I don’t think that either the webcams or the full-time carer would change anything, he would still phone, just to be sure.


Please read my blog from 2 years ago today – 14/05/2014 – Pride a deeper pain

It’s is amazing how the second you know someone is coming to the house, you suddenly see all that mess and dust that you have managed to turn a blind eye to for months. Jake phoned last week and asked if yet again I could bid on another cymbal for his drum kit, I am sure now that he only asks me to do it, not just because I am here for the postman, but it also gives him an excuse to come round to the house. I don’t see anything like of much of him as I used to, but he is the only friend that I still have who even bothers to phone me now. It isn’t only my illnesses that are invisible, it is also all those people I once called my friends. His parcel actually arrived a couple of days……