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……

It’s really simple

I was reading a blog yesterday that I sincerely hope was tongue-in-cheek, as it was saying the most outlandish things about spending time with disabled people, and how to both speak to and treat them. If it wasn’t tongue-in-cheek, then I just found someone who needs locking up. Either way, it made me realise that I have over the years, had many odd reactions from strangers. Granted, when you are asking for help to get out of your wheelchair with loads of parcels, I suppose it does set other people’s minds running. I had to get up two steps, yes, another one of those well-designed buildings, but there was no other choice. Some people are extremely helpful, but I have noticed one thing, from taxi drivers onwards, no one ever wants to touch you, not even when you hold your arm or hand out. I have never been able to work out if they are scared of catching something, or they are scared of hurting me, it could be either. I suppose it is another one of those situations, where education and personal experience means everything. But as a golden rule, if someone offers you an arm, your not going to hurt us and it’s rare, that we have fleas or any other sort of lurgy.

It isn’t that many years ago, where the general opinion out there was, that the second your backside settled in a wheelchair, you became brain dead and deaf. Personally, I have only come up against that reaction a couple of times, but over my lifetime, I have seen it far too often. Once again, I can see that the world is changed and is still changing, but it wasn’t fast enough for my life. With schools now being integrated and disabled children no longer isolated to spending their childhood, with only other disabled children, there is a generation growing up, who will treat us, very differently. Clearly, I haven’t been out socially for over 8 years, but I have noticed on the few trips I have taken to the hospital, that not only has the world changed, so have I. I can remember seeing people sitting in their wheelchairs, with their carer saying almost everything for them, and wondering why, they weren’t speaking for themselves, now I am beginning to understand.

The hospital that I go to the most is the one where Adam works. When you arrive by hospital transport, you can’t bring your own chair, so you have to use the ones available and they all have to be pushed. We often when we are there, bump into people he works with, and they will exchange a few words. I don’t know them, nor do I have anything to say, so I sit there silent. It would be just the same if we were out in a shopping centre, if we met someone, it would be someone who knew Adam. Why? Because housebound or just wheelchair bound, we don’t go out, and the longer that goes on, the fewer people we actually know. Oddly as well, the longer you are isolated, the less you actually feel like sitting there chatting for chatting sake. Logically, you would expect it to be the opposite, but it isn’t. Spending so much time alone, should you would expect, make you want to make the most of every second that you have, with people, but you don’t. The truth is, the more time you spend on your own, along with the worse your health gets, the more withdrawn you become. To my surprise, these days when we go to the hospital, I know that I now adopt a body posture that simply screams, leave me alone. It is one of those things, like any piece of body language you don’t notice you are doing it, until later, when you look back on your day.

I had never thought about it until recently, but it is a posture that I have seen right through my life, from others being pushed in a wheelchair. We sit there, hands folded on our laps and our eyes cast downwards, often, we also sit not straight onto the world, but slightly to one side and it screams, I’m here, but I’m not. On occasions, the way I sit has far less to do with my mental state, or how I have changed over the years, but the pain I am in at the time, but no one but I, know that. Our perceived body language isn’t always what it means, more what our bodies are doing to us at the time. I hadn’t realised just how degrading being pushed in a chair is, far more than propelling yourself. Haveing to be pushed, is a diminishing experience in its own. I used to blame it for me being like that, but now, well now, even if I were to be in control, it wouldn’t be any different. The more ill I become, the longer I am housebound, the more I am withdrawing from that sort of interaction with strangers. The combination of my stuttering, memory problems and everything else, is turning me into one of those people no one really knows how to interact with, and I can see and feel it happening.

So how do you react to someone who is so clearly shutting you out? You speak to us as though we were standing next to you smiling. If that is how I am treated, I respond like I would have done 20 years ago when I was fit and healthy, just with a stutter and few missing words. Don’t shout at me, I’m not deaf. Don’t put your head on one side, and bend towards me, that comes across as patronising, or depending on your smile, intimidating. Don’t crouch down to my level, that’s how people speak to children in a pushchair and I’m not a child. Don’t speak slowly, I do still have a brain. Even worse, don’t speak slowly with emphasised facial actions, as I’ll feel like punching you. It doesn’t matter how I look. If I’m twitching or quietly trying to pretend there isn’t a speck of drool on my lip, treat me just as you would treat your friends. The majority of us that you will ever meet, have brains. There is only one fact you will ever need to remember. No, complex issues or list of possibilities, it’s simple, we are people, treat us as such.


Please read my blog from 2 years ago today – 21/02/2014 – An appetite for inaction

I woke this morning with one small problem, breathing. For once this has little to do with my COPD, this is the fault of yet another cold that Adam caught and of course, means I then catch it as well. My head felt like it had been……






What makes me disabled?

I thought yesterday would be the day where I started to make headway with my plans, it turned out the total opposite. The only positive thing I managed all day was to dye my hair. It is now a glorious glowing purple again and so curly I am beginning to really wonder what has happened to my hair follicles. I wrote a post a couple of years ago called “Crystal Tips and Alasdair”, a title that some of you might recognise from your childhood. I had suddenly discovered that my once completely straight hair was wavy and even edging on curly, two years on, and it is quite defiantly becoming more and more curly with each year. In my post, I had come up with a theory about hair possible turned curly with age. Well, you rarely see young women with curly hair, yet every second little grey, no, sorry I should say “little blue rinsed granny” has curls. It may just be me, but those big gentle waves from two years ago are getting tighter and tighter. Rather a bummer actually as I had this mad goal of getting all my hair well down past my hips, rather than just those extra long strands getting caught when I sit down, it would all be. If it going to keep getting more and more curly, well I’ll never get to that goal. I have to say that I’m not moaning in any way, it does look rather good.

I may have successfully managed to put the dye actually in my hair rather than all over both the kitchen and bathroom, but it was at the same time the messiest hair dying session so far. It really is getting harder and harder to achieve precision, I know Adam would be perfectly happy to help me, but each time he has tried he just hasn’t been able to get the speed element at all. Most dyes should be in contact with your hair for more than 30 minutes, but it requires 20 to turn the untreated hair to the desired colour. Therefore, you actually don’t have much more than 10 minutes to apply it all, even with a home dye that allows a bigger window of error. He just doesn’t seem able to do it any faster than ten minutes per strand. My hair would be totally fired beyond repair if he was the person who always applied it. I used to be totally obsessive about not having roots that showed, it was a pet hate of mine, especially as time passed and my number of grey hairs just kept growing. Being housebound seemed to break that one into tiny pieces. I don’t think I died it at all for the first 3 years. Since then, if it gets done twice a year, well it’s doing well. There is something about not being seen by outsiders that have changed my behaviour, which I don’t really get. I was the kind of person who even if I wasn’t going out that day, I still applied a fine layer of makeup, mascara and eyeliner, these days I do none. It is oddly liberating, but I know who’s fault that past behaviour was, it was my mothers. She used to say, you never know when the doorbell will ring, she was right, but does it really matter? Maybe not, but I still don’t want my hair fried. It is another one of those things that I need to work on sorting out before I suddenly find myself totally unable to do, I need to find a hairdresser who will come to my home.

There is something so important about holding onto all those tiny strands of independence. I even found myself when I started looking at containers for me to transport liquids in during the day when Adam wasn’t here to help, that I could fill myself. It took time for me to realise this, but I am glad that I did. I know without a doubt if I bought 6 or so small bottles, that Adam would happily fill them and they could just sit in the fridge to be used and refilled by him when he was next in the kitchen. Independence means I want to be able to go to the kitchen, where I haven’t even checked yet is, if I can get the bottle out of the fridge door or not? Then I want to fill up whatever the container is by myself from a 2lt bottle, on a counter which might be too high to reach with ease from a wheelchair, put the bottle away again, fix the top onto the container so it doesn’t spill on the way back here, so I can then pour into my glass. Independence stinks, as it pushes you into doing things that are clearly complicated and difficult without thought. It stops you from being logical in any way what so ever, how on earth am I going to manage that without spilling stuff all over the place. Working all that out showed me that my trip around the house the other day didn’t even scratch the surface. I need to repeat it and actually perform every task I can think of that I do daily, not just say well I can do it if…, but actually do it and note where it goes wrong and how to fix it. Then I can sit and look at what independence is possible and where I will just have to swallow my pride and accept it has to be done another way.

You wouldn’t think that doing something so mundane as fetching a drink, can actually be important to do ourselves. If you think about it, though, fetching a drink ourselves is probably one of the very first so-called grown up things we ever get to do ourselves as children. I can still remember the pride on Teressa’s face the first time I allowed her to not only fetch a drink for her but also for her brother. She got to do that long before anything else and it clearly made her feel grown up and independent, disability slow strips them all away, one by one. I used to wonder where the point was that you ceased to be able-bodied, as I have never seen a definition of what able-bodied is. I’ve seen loads as to what disabled is, but able, never. Everyone assumes they know, it’s one of those things that I know without doubt if you stopped people in the street and asked them, most would look at you blank and start to umm and aah, some might actually answer “that’s a good question”. I wouldn’t be able to give a succinct answer and I’m the one asking the question. Even when I searched it on Google many of the dictionary explanations could also be applied to many people who are disabled, especially those who are Olympians. Able-bodied and disabled clearly aren’t definable, yet we all put such importance on them both, when we don’t even truly know which is which. Does the quality of what I write show that I am disabled, if I were sat on a normal seat beside when you asked that question in the street, would they all point at me and say “She is not able-bodied, in fact, she’s disabled”. I doubt it. Yet, so much of society sees me that way. To me, the biggest disability I have, is the loss of my independence, not the physical and mental problems I live with.

Clearly I need to get the wheelchair out of the cupboard again for another test drive. This time it has to be done with a different question, not the physical layout of our home, but the activities within it and how to preserve as much of my independence as possible. It is all too easy to say “well Adam can do this or that to help”, I am sure Adam can and would without a grumble, but why should he do anything when I can. The importance of my independence isn’t the only issue here, there is also the issue of Adam independence and his right to a life as well. The time will arrive soon enough that his life will be taken over by mine, but it doesn’t need to happen sooner than necessary.

Please read my post from 2 years ago – 30/08/2015 – PC, what PC?

I am getting so far ahead of myself, telling myself every few minutes that that is it I have everything back in place, a few minutes later I find once more I’m not. At this minute my beloved PC is only partially working as it should, there is still so much more to do and I just want it done. The last few days have been total hell, I really am not……