Tag Archives: Aids that work

One direction

Posted on by
13

I know that I mentioned a few weeks ago that I had managed to not just find to my surprise grab rails that I liked the look of, but I had actually got around to buying them. I had been looking on and off for rails for the bathroom, but I wasn’t going to buy anything, if, I didn’t like the way they looked. The standard plain white straight bars have always been offensive, they shout disabled in a fashion that grates to my soul. As I have said often, this is our home, not a hospital. The bars I had chosen, have a chrome finish so that they fit with everything else in the room. They also have an appealing “s” shape that makes them flow, rather and abrupt starts and stops, even though they don’t touch each other. There was, of course, one other problem to cover, getting them installed.

Adam has always been a highly reluctant DIY’er, and experience has taught us that the walls in this house, weren’t designed with anything being attached to them, at least not with ease. Victorian wall construction was creative, to say the least. They believed strongly in what wasn’t to be seen, didn’t matter, hence the fact that the materials used, have no consistency. In just a two inch space, you can go from a brick made of steel to one that crumbles away at your very touch. Add to that, that the strength of plaster varies from blown, to stable with no change in appearance or sound change when knocked, they make even hanging a picture a nightmare. Our personal tool box does contain a drill, just not one with the power to actually make holes where we want them, rather it only manages to put them where the walls comply. I did the only thing that I could, I turned to the web to find someone with not just the tools, but the will to get the job done quickly and cleanly. To my surprise, I managed to find several possibilities, not to my surprise, the best quote that I received, meant that my initial expenditure of £45 to buy the rails was now doubled, by getting them fitted. This is the unfortunate part of being disabled. If you aren’t willing to take the deeply unpleasant NHS offerings, you are going to have to find the money to pay. It’s not that I am looking for charity, but the costs of just living in your own home, start to mount up. I also think that the NHS are missing a trick, one that could help to supply them with a little more cash. They have the buying power to purchase in bulk, they could offer a range of choices, from free, upwards. Such a service wouldn’t only mean an income for them, but it would remove the stress that I’m sure results for many. Getting something as simple as grab rails right, matters.

My new fixture in the bathroom don’t only look good to me, and to Adam, they somehow manage to not look like grab rails, more part of a normal everyday space. Beyond that, the positioning that I have chosen for them means that they feel instinctive.

20160419_235601

I just want to point out, out bathroom walls are cream, the gloss peach, and the toilet is white, not varying shades of yellow and orange, but this is the best picture Adam managed to take. 

 

I don’t even have to think about using them, I find my hands naturally taking hold and willingly taking the load, something I have never experienced in a so-called “Disabled toilet”. I have found myself often been faced with a selection of awkwardly shaped objects, many that I couldn’t even reach and didn’t assist me in any way. By finding the right shape and putting them in places that work for me, not the OT’s of this world, I now have a room that I at last feel safe in. On top of that, Adam has even said that he, at last, feels relaxed about my being in the bathroom too. Yesterday he admitted, that even when he is at home, he has been sat on the edge of his seat, waiting to come to my rescue. He admitted that he had heard banging and clanging that he was sure was me falling or just being in difficulty and not knowing if he should or shouldn’t come to my aid. I also admitted that what he had heard, was probably totally correct, I just hid it, so he didn’t worry. They may have cost us a bit more than I expected to pay, but right now, I believe that they were more than worth it.

I freely admit, that I now feel far more positive about the whole idea of aids in our home. They are something that I have fought against for a long time, simply because of my personal experience of them. I have found myself in hospital on numerous occasions and when there being faced with things that weren’t only deeply ugly, but actually caused as many problems as they were supposed to help with. Finding something as simple as three pieces of steel that actually do what I want, has changed all of that. From here on in, I am going to blank out all the useless ugly things from my mind and I will search for what I want and need, not what I am offered, as there is a huge difference.

I don’t think that many appreciate the mental shift that it takes, to start putting such things into your home is huge. It is in many ways a public admission, that you are disabled. Yes, I know that anyone entering our home can see that straight away, as I am in a wheelchair, but wheelchairs can be temporary, bars screwed to the wall, aren’t. So far, everything had a temporary feel, such as the mattress elevator, it can be dismantled and taken away, as can the perching stool and so on. I know that three bars, doesn’t sound like much to many, but to me, it is like not just haveing disabled stamped on my forehead, but having it tattooed there. It is the final step, one there is no going back from, and I feel far more at ease about accepting.

 

Please read my blog from 2 years ago today – 19/04/2014 – Longevity, blessing or curse

There has once again been a lot of discussion on TV about the age people retire and how we receive or not, our pensions. Yesterday the government proposed a scheme that would tell all of us at retirement our life expectancy so that we can plan just how we are going to use the pension pot we have and how to be sure that it will last our lives, the TV channels have gone nuts about it! You would think that they had suggested that if you live past that point, you will be forcibly extinguished, not that they are proposed a truly useful system to help you make plans for your future life. I have never understood why people just don’t want to know how long they have to live, it is something that I have always wanted to know, even when I was fitter and slightly healthier I wanted to know. It isn’t that I am in a hurry to die, it is actually the…..

Instinctive training

Posted on by
5

The first set of grab bars arrived yesterday afternoon. I have to say that I am rather pleased with them, even though they are just the suction cup type, they aren’t as unpleasing to the eye, as so many that I have seen. Of course, they still appear bulky, but they are at least firstly chrome coloured and have soft black hand grips centered on each bar. It wasn’t just there look that made me buy them, but the fact, that beside each suction cup, there is a tiny indicator which changes from green to red, should the suction not be tight enough. Like a lot of shower units, ours has two glass walls and which are, of course, the best position for hanging things like our body puffs and so on. We are therefore perfectly used to hearing the hooks giving way and clunking into the shower tray. The ease that suction cups give way had worried me from the first time I heard that such type of grab bars existed. The image of reaching out to use one, and crashing to the floor, with it in my hand, had entered my mind more than once. I’m hopeful that the indicators will mean this just won’t happen, but only time will tell.

It doesn’t matter how much you know you need these sort of adaptations to your home, it is actually a really big thing, to have to buy them and as I know, even harder to actually let yourself use them. I know that it took me several months, to actually fold down and sit on the shower stool for every shower. Even now, on a good day, I will stand for part of it if I can. No, this isn’t just about ego, it’s about so much more. In the case of having a shower, it has a great deal with how you shower. The routines and habits that you have learned over the year. Sitting down and cleaning yourself, isn’t as easy as you might think, especially when it comes to your back and well, obviously, the area’s you are sat on. Unless, you want to be constantly standing up and sitting down again, which is tiring and in itself dangerous, you have to break habits and wash there first, before sitting. No matter what you do, you still have to stand and rinse yourself once more while standing, to be sure all the soap has gone. At first, the seat seemed more a hindrance, than a help. Not only was sitting in the shower, just wrong, it did on top of all of this, hurt my ego. It’s a tool, and just like a walking stick or a wheelchair, you have to adapt to it and that always takes time. Without a doubt the bars will make showering safer, but, I will have to adapt, again, into using them.

Like most people, able-bodied or disabled, I have my own fair share of gizmo’s and gadgets that I have aquired, think they would make my life easier. Like most people, the majority of these wonder objects, have been packed away, never to be seen again. Aids are just the same. If they don’t work for you, if you don’t like them for whatever reason, you don’t use them. My first piece of advice I would give to anyone who has decided they need something to help them, is to look for not only the right aid, but the way that it looks. I know that we all need to look at price these days, but if the difference between the one that will just do the job, and the one that your like, is small, go for the one you like. That’s another one I have learned the hard way. It makes no sense what so ever, buying the one that will do, if you land up hating it and not using it. Yes, for £5 less each, I could have bought plain white grabs for the bathroom, but every time I entered the room, I would have cringed. I would have hated them so much, that I would have died everytime a visitor asked to use my toilet. It’s also a fact, that the more you hate something, the less likely it is that you will use it. I would also have seen the one thing I have fought hard against, a hospital. This is my home and it has to look just like that, a home. Trust me, a grab bar, isn’t a grab bar if you totally hate it. No, I don’t love them, but I don’t hate them either.

Years ago, even before I was diagnosed with Fibro or PRMS, I developed a habit that few noticed, I always walked close to walls. No, I wasn’t shy, I knew there was a problem with my balance. There was in my mind a safety in being a wall-hugger, I still am as it’s now an instinctive action, one I that developed after a few embarrassing falls. On bad days, I dreaded having to cross any open space, being outside and worse still having to cross a road, was a total nightmare. The doctors kept telling me I was fine, but I knew that I wasn’t. Back then, I had clear good days and bad one, unlike now when healthwise, it’s only bad. Back then, I also always had some notice, I felt it building and I knew pretty much, when I was safe or I wasn’t. It wasn’t my legs, they worked fine most of the time, and balance issue are quite different. As time passed, the good and the bad blurred and the walls and furniture developed a permanent magnetism for me. They became part of my instinctive life. I had learned their value and the safety they offered me.

It doesn’t matter how much of a problem your legs are, or even your balance, if you have spent your entire lives using them, that is still what you expect to be able to do. Doing something like standing up, or walking is an instinct. If you can take one step unaided, no matter how dangerous, you do it without thought. I know every single time I stand up, I am now in danger. That doesn’t mean that I have the brains to hold onto something that is there, just in case, something goes wrong. Because of the way my legs fail, I should. I should never move without holding onto something or being in my wheelchair. I know all that, but instinct is a truly hard thing to fight. That first or second step that I take can be the very step where my legs just vanish from under me. When they do, it’s too late to try and reach for the thing that’s there to save me. I’m already on my way to the floor, and too far from what was there to save me, to hold me up and allow me the time I need to recover. Yet still I take those steps, the steps I have to take, between one chair and another, and where are my hands, well not where they’re needed to save me. Instinct can only be broken by training, repeatedly training, the training I frequently forget to do.

Becoming disabled due to a progressive illness, isn’t like flicking a switch. It’s slow, so horribly slow. In my head, I can do anything, I am still the person I was when I was 20. Unfortunately, there isn’t a single part of me outside the tiny part of my brain that thinks, that is in fact, anything like what it was when I was 20, or as when I was 30 or 40, or even last week. My problem really is that tiny part of my brain. Someone could arrive here tomorrow and install, tastefully, it would have to be tasteful, ever aid I might ever need and the day after, I probably wouldn’t use a single one. Trust me, it would be exactly the same for you. We don’t think about what we are doing, we just do it. It isn’t until the second something goes wrong, that you even think about it. I long ago stopped counting how many times I have found myself on the floor. Not even the knowledge that once I am down there, and there is no way on this planet I can get back up again unaided, changes nothing. Nor does the number of bruises or scars I have received. Just like a child, I continue to act as though nothing has happened, not because I am stupid, nor my ego, but simply because I am human.

 

Please read my blog from 2 years ago today – 04/03/2014 – Unsolved problems

I didn’t sleep last night as well as I could have, I kept waking because of the pain in my back. It’s a pain that appears from time to time, I think because I always sleep flat on my back, not the position that most people seem to. Years ago I know I went to sleep on my side and once asleep I rolled to my back, but the bed also showed that I did move around a little, these it shows I don’t move a……

 

 

 

 

 

Fiddly bits

Posted on by
3

It is very easy in life, to just get comfortable, with things in our homes and lives and never even think, about changing them. Sometimes it’s because we think we have found the best there is, and at others, we’re just comfortable with what’s there, yes, it might be tatty, but it’s doing its job, so why bother changing it? I had for a while been intending to buy a new sleep mask, but for some reason, I just kept forgetting about it. The one I had still blocked the light, it was just that the edges were fraying and the elastic had turned rather slack, after months of use, it was overdue replacing. I had been so impressed with the one I had, I didn’t have the slightest doubt about buying an identical one. I wasn’t looking for it, but I noticed that some packs came with a free set of earplugs. I’ve tried many different ones, and although similar, these were a slightly different shape, from those I used, so worth a try, especially when it wasn’t costing a penny. They arrived yesterday and when Adam came home for lunch, he opened the package, which was once again beyond me. I understand that packages need to survive the postal system, but do they really need to be so tough? Who do they have working in the Post Office these days, gorilla’s with extra long nails? Once open he switched them over for me. leaving the new ones in place and ready to go when I went for my nap. Boy, what a nap that was. I couldn’t believe how I never heard, even the muffled sound of a single car, and the fit of the mask was so comfortable, I was simply stunned by the difference. I have to say, it has made me start wondering about some of the other rather tatty looking objects I use daily, simply because I always have, maybe, it’s time a few of them were changed as well.

It may have given me a great sleep, but it didn’t do anything about the pain I was in yet again from my stomach. I really am beginning to believe that half of what is wrong with me is coming once more from my guts. Clearly I’m guessing, but if I am in pain all night, the fact that I am waking up, uncovered or squashed into corners, says that I probably am, I won’t be getting a good nights sleep. Yes, I’m asleep, but what I am questioning is its quality. During the day, I am constantly on the move, twisting and turning, in an attempt to let whatever is inside me, to pass the area it’s causing pain in. It would be a miracle if it wasn’t disturbing me in the same way at night, which would explain, a whole list of things that have been happening recently. Just over a week ago, I made a new batch of Psyllium pancakes. I had deliberately made them slightly bigger so that I was getting a large dose from each one. Over the previous month, I was having to eat two instead of one, just to make things move at all, proving that in that batch, the dose was too small. On day 4 of eating the new ones, I went to the loo without any problems. Then again on day 5 and 6, on day 7 I suddenly found myself going twice in one day, something that is totally unheard of for me. Then yesterday, once more my bowels moved first thing in the morning, followed by even more intense pain. If I had been passing tiny quantities, I would be just shrugging the whole week off, but I haven’t. Granted my stomach looks a much better shape than it has in ages, but the spasms, are just never stop. It is as though my insides had been storing up far more than I thought was there, especially when you add in just how little I really eat.

Last night, I actually did wake up due to the pain, so I am reasonably sure that I have found the culprit for my increased tiredness. It’s over two weeks now that I have been feeling over tired, but, it is almost the same length of time since I started to have, increased pain from my guts and started feeling tired. The early stages were probably from the build up that wasn’t shifting, now, it’s because, it is. What I am not sure about is the dose of the Psyllium, do I continue with it just as it is, or do I reduce it? If I reduce, it may just slip back to not moving, if I continue as is, the pain may just continue as well. It’s a difficult one, but I think that I need to continue for another week at least, as I may just be getting used to the dose and it may just all settle down, now that the bulk of the work is actually done. In a way, it is totally my fault. I should have acted quicker last month when I first noticed that the thinner smaller pancakes weren’t working. But I just persisted, as they were the ones that I had made, and they were the ones, I was going to eat. I am so used to my routines and my systems, that the whole idea, that I had got that batch wrong, just wasn’t computing. I just continued in a blind belief that eating them anyway, was fine. I wasn’t going to waste them by throwing them out and I wasn’t going to waste any of my none scheduled time, in making another batch. I already begrudge them the time they take once a month, after all, my body is supposed to work without them.

That is an easy trap to fall into and this isn’t the first time that I have. I have to admit that, that, is a large part of the reason I don’t use my catheters. Somehow, that whole idea that I have to intervene to just to get my body, to do what everyone else’s does without thought, is wrong. I have managed to get my head around so many aspects of my health. I have accepted so much, but to actually physically intervene with my internal workings, feels like one step too far. So if I have to, then it has to simple and fast. Catheters aren’t, they also hold a huge embarrassment factor and a few other issues I’ve written about before. The fact that I have to make pancakes, and I really do now need Adam to help me as well, makes them an intrusion, something that being comfortable with, is really hard. Any idiot can be comfortable just swallowing tablets, me included. But having to go through a once a month ritual of 5 hours work to make those pancakes, to remember to defrost one every day, then to cover it in a fine layer of jam, and make yourself eat it, despite the odd flavour, is wrong. I do it, but it’s wrong and I’m not going to get through a batch quicker, or throw out a batch that’s not right, as I would then have to find another 5 hours to replace them. My body is demanding, so much care these days, just to do the things it once did by itself, and I’m not good about caring for me.

Tablets, inhalers, nebuliser, Pysillum pancakes, wheelchair, mattress elevator, shower seats, pressure mattress and cushions and all the other things I can’t think of at the second, they all push their way into your life. If they are there, like a mattress, no problem, I don’t think about it, I don’t even register its existence. But those I have to think about, that I have to interact with, they wear me down. Not going out, not being able to work, not having the opportunity to live an average life, spending that life in pain and housebound, without a memory and without all the things I once loved, unable to do all the hobbies I once loved, I can live with all of that. That is all easy, I accept it, work with it and make the most of all of it. Just don’t ask me to use a catheter, to find the time to make pancakes or to enjoy using a nebuliser. I don’t want them in my life, I don’t want to have to give time to them. I just want to keep being me, without all the fiddly bits. Without all those annoyances, well I could live forever just as I am, but the more and more things that I have to do, to keep this body going, the less I enjoy things. All I can do is, to hope that no more gadgets are foisted upon me, as I think I might just tell the doctor where to stuff it, regardless of their so-called benefits.

 

Please read my blog from 2 years ago today – 08/12/2013 – It’s gone again

Half an hour ago I knew what I wanted to write about today, but I was doing something else when the idea appeared and I stupidly didn’t keep a note of it, I just kept working away in the stupid….

One week on: Life support

Posted on by
2

I am beginning to think that I am never going to have a complete knuckle to my middle finger on my left hand ever again. On my first day in my chair, I managed to scrap a deep hole into it and almost every day since, I have managed to remove the scab. Other than that, I have to say that I am managing better than I thought I would this time last week. Although, I have made a discovery about my home, well made it isn’t really true, as I have always known just how uneven the floors are in this house, just not exactly how badly. I don’t think there is a single six-inch square that is in line with the next one. Everywhere that I want to stop, I have to put on the brakes as within seconds, one or other of the wheels will be rolling away and slowly turning me around. I am getting used to it, but it’s can be really annoying, especially when you can’t even get it to still long enough to put those brakes on. If you have never been in a wheelchair, every single inch or turn of a degree, is the difference between being able to do what you want and not being able to reach at all. Rolling away or being out of reach, really matters when you have a toothbrush in one hand and a mouthful of froth.

For anyone who is facing a possible future in a wheelchair, don’t buy a single thing for your home without first checking if it is wheelchair friendly. What I mean by that is simple, can you or you body or your chair knock against it without anything being damaged. Personally, I recommend strongly if you buy anything made of wood, which our house is full of, to also by some sandpaper. While you are fit, sand all those sharp corners off every horizontal and vertical surface to form lovely soft rounded ones instead, and include every door jam, frame and door itself in your home, as part of that project. I think in the past week that I have found every sharp corner there is in every room. You honestly don’t notice them when you look around and say to yourself this house is perfectly safe, trust me, it isn’t. No matter how good your steering, it is never as good when you are half asleep, or the house is badly lit because it’s night time. I am getting better and better at my sinuating dance moves around our house every day, but I know without a doubt, even if I do get an electric chair, there will be those stupid corners catching hold of me at some point. I know for a fact that it doesn’t matter how well you plan, there will always be things that catch you out, things you could never have planned for at all.

I woke in the early hours of last Wednesday morning with my leg outside of the bed. Nothing unusual there, but instead of my foot being on the floor, it was balanced quite comfortably on the front wheel of my chair. I laughed to myself and pulled my leg back in and returned to sleep. I had been parking my chair at night close to the bed facing in the direction I had entered the room, meaning I had to back out. It was convenient and easy and even when I found my foot balanced on the wheel, I thought nothing of it. Early on Friday morning, I woke once again with my foot out of the bed, but this time it was in pain and complaining. My foot was caught in the chairs frame and something was cutting into the top of it, although the sole of my foot seemed quite comfortable. My foot was trapped in the folding mechanism. How I had got it in there without waking from the pain involved, I didn’t have a clue. Once awake and in control of my actions, getting it out was easy, but it hurt, the chair couldn’t sit there, that was clear. Luckily there is space in the bedroom to put the chair far enough away so that my nighttime activities don’t involve it, but close enough that I can reach it with ease. Of all the things I thought I needed to plan, what happened when I was asleep, was nowhere on the list at all. How we plan for the totally unforeseeable, I don’t have a clue, but I guess it is all part of the fun of chronic illness.

On the downside, my hands and arms are really showing the strain. Most people think that it is your arms that do the work. To a certain extent, that is true. Your arm muscles take the strain of those open big pushes that propel you at any speed or in a straight line. It is your hands that supply the motion when it comes to those more delicate actions, something that there is a lot of requirement for when you’re in a normal house. All my finger joints ache for ages after even the shortest of trips, from one end of our living room to the other. If I leave this room and venture further, by the time I come back the pain has spread throughout my hands and into my wrists. Once the end of the day has appeared, I don’t really want to use my arms or hands any more than I have to. I keep finding myself sitting with them sort of limp and doing a good impression of two wet pieces of string, sort of dangling there and useless. I have found myself by the time my last round of meds comes around, sitting on the settee looking at my chair with dread. That trip to the bathroom to clean my teeth after taking my last inhaler just fills me with dread and there is a huge temptation to just not bother. I know that would be stupid, but it has become a daunting task right in the middle of what should be a relaxing evening.

I am glad to report that I have settled onto my new meds. My suggestion when I first started on them that it might me be rather than the drugs, turned out to be true. I didn’t take any chances for the first few days after my heart rate went nuts, but once I was used to the process, I brought them gradually back together. It is now two hours since I took my morning dose and my oxygen is settled and 93 and heart at 87, neither can I complain about, though I was hoping that my oxygen would have improved. My thought that I was getting myself wound up about it all appears to have been spot on. The odd thing still is, is that I didn’t feel wound up about it at all, more pissed off if I am honest. I actually timed it all the other day and just the whole process of taking all my drugs, inhalers and cleaning my teeth then putting everything away again has stolen 35 minutes out of my already diminished day, rather than the norm of about 5 minutes. Another of those things that you can’t plan for. I don’t know why, but I never thought that taking drugs was something that would eat into my day, clearly that idea was another that was totally wrong. It is another of those things that no one ever prepares you for, the fact that to just stay alive, that you are going to have to spend time on different treatments daily. I doubt there is a single person out there who ever thought that part of their day would be spent connected up to a machine. A machine that needs setting up, cleaning and dismantling every time you use it. My life has been eaten into already because I do such a great impression of being in a coma for 13 hours of each and every day. I now see that the truth will be that of those 11 short hours of consciousness may well be diminished further and further.

Life is an odd thing and seems to just keep getting odder and odder as time goes on. Maybe I have reached the point where even trying to plan what will happen next, or what I can do to make it better has come. You can only plan so far into your future and forecast so much, eventually your health does overpower even the logic of trying to predict it, as there isn’t any logic at all now. I haven’t been able for years to plan even today and at best had to live life just within a structure, knowing the milestones ahead of me. I think that’s was what I was feeling the other day when I said that my wheelchair was a symptom of my health. It’s a symptom along with the nebulizer and everything else that I have reached a point where my health has finally taken over every aspect of my life. There isn’t a single element that isn’t aided, or an action that isn’t supported, without them, it would be only a matter of time before I ceased to be. And finally, I have said it in straight forward words. Facts are odd things they sometimes have a lot of different approach roads before you find the most direct and simplest one. It isn’t just Adams having to help me and do so much for me, or the wheelchair, or the equipment that helps me to breath, or all the meds that I have to take. or the pancakes that keep my bowels moving, or even the catheters, that I know I should use daily but still refuse to and glare at me from the cupboard, it is everything, all of it in a oner. My actual life force can no longer exist without a web of support and that’s what is eating at me. What happened to just living? How did I land up here? How do any of us?

Please read my blog from 2 years ago today – 21/09/2013 – Small and irritating

It’s really early and I do mean really early, I actually don’t remember when I was last up at 5:35 am, but I woke up aching all over and couldn’t find sleep again, so here I am. I can’t believe that only a handful of years ago I used to be up much earlier and I would have been in…..

Making a differenece

Posted on by
3

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…