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……

Fiddly bits

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….

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Changing our health thinking

My pulse rate and oxygen monitor arrived yesterday and so far it has been an eye-opener. The maker says that it can be accurate within a 2% plus or minus range but even allowing for that, I have been rather surprised. A normal oxygen level is seen as anything between 95% and 100%, for one brief measurement I did hit 98% for a few seconds, but it didn’t last. I have been putting it on and off my finger at different points throughout yesterday and this morning and it appears my normal is between 90% and 94%. This morning I have been checking every 15 mins since I sat down here at my PC, it is solidly at 90%. The highest it has been and stayed there for a few minutes was 95%, but again that didn’t last for more than about 10 minutes then it dropped again. The best results have always been just after I have been up and about. The muscles in my chest often seem to be less tense during and after what is the closest I ever get to exercise, walking back and forwards through the flat. Every result that I have achieved over 95% were all straight after I had been on my feet. The longer I have been sat, the worse the muscles seem to get and down goes my oxygen levels in line with it.

Lying down is a great trigger for my chest muscles going into spasm and just before I go to sleep, I often feel really odd. I also have odd sensation in my face, hands, and feet. Basically, it is an intense tingling. What’s odd is that I get what feels like a twitch at the end of my nose and the triangle formed by my nose and mouth is the most intense area and often feels somewhat cold as well. There is often a buzz in my head and I sometimes even feel sick. I took the monitor to bed with me when I went for my afternoon nap and luckily, my body co-operated. My diaphragm and intercostal muscles started to tighten, the sensations quickly followed. Although it is on the edge of sleep I pulled myself back and looked at the monitor I had placed on my finger when I first lay down. The reading was 82%. I know that a one-off means nothing, so I settled down to repeat it last night. Nothing happened. I had to give up after 20 mins as I needed to go to sleep, but it was the first thing I checked when I woke to find it was at 89%. Those are not good results in anyone’s book. Although the opportunity hasn’t appeared yet, I often feel sick during the day. I know that it is one of the symptoms that goes hand in hand with my MS, but I think it might be worthwhile testing during the next spell that occurs.

I have less than 24 hours of checks, but even if it isn’t as accurate as hospital monitors are, it still shows that what I believed is true, my oxygen levels are low and all over the place depending on the tightness coming from my spasms. It does though cause me one of those quandaries, do I tell the consultant what I have been doing, or do I just tell him how I have been feeling, as that is what prompted me to buy it? I know from experience some doctors really don’t like us doing things like this. They seem to see it as their job and not something we should even be thinking about trying to do at home. Mind you, I am sure that they are more than aware of the fact that these monitors are now available and at a price most people can afford. That though doesn’t make the answer any easier.

The monitor of course also shows my heart rate, not that I think there is anything wrong with my heart, but it has been just as interesting seeing what it’s results have been. So OK the results could have been better, everyone’s could be better, but taking into account that I have spent the majority of my life sitting down for the last 10 years, a resting heart rate of 84 – 88 doesn’t seem too bad. What I was impressed by though was how much I could make it fall by just using my relaxation techniques for a couple of minutes. I have brought it as low as 78, but it jumps back up almost as soon as I stop, it’s not as though I really needed any proof that it’s works, as I knew that anyway, but there is the evidence if it was needed by any doubters. I think it could be quite interesting to test that one on a longer time scale as I really wasn’t looking at it when I was lying down. As you might have guessed, I am rather taken by my new toy. I really do love anything that measures, quantifies and proves anything. It could be why I so loved my last job, working with stats and building computer programs that made getting those results fast and efficiently, was right up my street. My analytical nature has been limited to my body for the last few years, so having a tool that helps, just makes things more interesting. I wonder what I could find out there if I looked?

I am sure if you asked a doctor that they would say that none of these monitors that you can now buy online, nor any of those health kits, are a good buy for anyone. I understand their concerns, as without the knowledge and research behind what the results can really mean, could cause a lot of distress for some people. I see things like the monitor as actually totally the opposite. When you know, I mean really know, once you have a diagnosis and you have spent time reading and absorbing medical sites as well as those intended for patients and their blogs. I believe gadgets actually put your mind at rest. That was what drove me into buying it in the first place. I have been feeling so ill and so wrong at times and my worry levels, which, of course, lead to stress, were high. I needed to know. Strangely, like most people, I don’t have a pet doctor in my cupboard. Not so strangely, doctors don’t like you calling ever thirty minutes to talk about your symptoms, especially in at three in the morning. If there are gadgets that can actually show you how whatever part of your body is worrying you, is working fine, how can that be bad. And if it shows you that you have something wrong that needs more investigation, well again that has to be good, as you are not blindly putting up with something that needs treating. I do understand their fears that we start self-diagnosing and then self-prescribing incorrectly. but that is a long way from what I am talking about.

I know that there are a lot of things that the conditions I have can cause problems with other areas and organs in my body. For example, COPD can actually cause huge problems with your kidneys. If there was a simple test that I could do, that would show if there was a problem forming and that I needed help, rather than my blindly going on until the damage is done, I could call the doctor. To me that is perfect sense, I think it would be to most people in this world who have COPD. By the way, my oedema isn’t even bad enough just now for me to bother taking my Furosemide. I am not a doctor or a nurse, but I am also not stupid, show me and I learn. With the medical system under such strain these days, I would have thought that any testing or even just monitoring, that those of us with chronic illness could carry out at home, that would mean we didn’t keep returning to our doctors, would sound like a good idea to everyone. I am sure that most of us are capable of taking our own pulse and blood pressure supplied with the correct and what are now cheap tools. I don’t know what the cost of a visit to our GP or even practice nurse is to the NHS, but I bet the amount of visits that many seem to have, would pay for them quickly. Rather than visiting the practice weekly, their visits could be reduced to monthly, or even reduced to just a phone call. On top of that, being in control of your own health, is empowering and that always makes you feel more positive about the whole thing.

I think the time is coming where we all have to start thinking about what we can actually do for ourselves, rather than what our doctors have to do for us. Yes, there will always be things we can’t do, but we are more capable than many of us think. It is not just us that has to accept the changes that technology has brought to our fingertips, doctors do as well. It is a matter of just getting used to it and accepting it as part of normal life. We and Doctors have done this in the past and we can all do it again. Think about it, when did you ever hear a doctor complaining that we aren’t capable of using and understand a thermometer, most other health monitors are no more complicated.

P.S. I have just been reminded that not everyone who reads is from the UK. I should have added this, an answer I left to a comment….

“In the UK we have the problem just now that our doctors are over whelmed. In some place you can’t get an appointment for up to a month. It has meant people presenting a the emergency department and overwhelming hospitals. Frequently some have had to close their doors for several hours to all emergencies. It is a huge issue in the UK.

The NHS can’t even find enough GP’s to cover some areas in the country at all. Reducing their work load is needed quickly as too many are leaving the profession as they simply can’t cope working 70 plus hours a week. Not to mention that the government now want’s surgery to be open 7 days a week instead of just 5. Something is needed and needed now.”

Please read my blog from 2 years ago – 06/09/2013 – Accept the mess

I really hope that I am not speaking in advance of something else going madly wrong, but my PC is now working, updated and back even better than it has been for months. I suppose all of us have that one item in their home that if it wasn’t there, they simply wouldn’t know what to do with themselves, well as you may have guessed this baby is mine. It really is total madness that as sentient……

A plee to the web

I know without asking that you along with me and everyone else in this world speak faster than our brains have a chance to catch up with. Words tumble out of our mouths and those round us look at us as though we are stupid, then suddenly we realise just what those words where. The one that gets to me the most these days always come from call centers and I know because I have worked in some, that the operator is on auto pilot, saying the same thing daily with no thought at all. But having said I am housebound they still insist on asking for my mobile number? A milli second in thought would make it clear I have no need for such a devise, being immobile should be a huge clue, but I have lost count the number of times I have been asked for it. That is the way life is, it is the small things that get to us the most. There is no doubt in my mind that the world is set up for the able bodied and more and more it is also set up for those who have every gadget there is, and no way round it when you don’t. For those of us who are housebound or just chronically ill the internet should be the greatest tool there is when it comes to assisting us to live a full life, but here to, there are now barrier that are separating us out from the able bodied, the biggest one, the mobile phone number! I have learned a way round by just entering random numbers and for many sites that works, but recently I found a new one that checks the number as they want you to accept an app, even saying you don’t want the app doesn’t get you past, it as it demands a real number. Who ever it is who builds these site are making stupid mistakes due to lack of thought, they may not be saying the words but their actions show there is no or little thought in their designs.

Getting the outside world to remember that not all of us have ipads and iphones, that don’t have or need ipods, but do want to do business or just brows for information, is becoming as hard as it was to gain access to many buildings when you are in a wheelchair. Living on a limited income will restrict many ill people from buying gadgets that aren’t totally required, I manage happily with my desktop computer and land line, but it feels as though slowly I am being excluded again. Admittedly the number of sites putting up barriers so far is small, but I fear it will be a growing trend, just as there are sites now that demand you give them access to your Facebook or twitter account, something not all have or want. More and more will expect you to have an array of gizmos we simply can’t afford, to be honest even if I could afford them I still wouldn’t personally have them, as I see them as no use to me at all, but that is a different argument.

Until I was in a wheelchair I never realised just how unfriendly the outside world is when you are on wheels. To find now that somewhere you would expect that disability could never be a barrier, is now discriminating against those who can’t afford, or has no need for, those toys the well off able bodied have, is a shock. It may not happen, but I fear that there will be more and more of these badly designed sites and that there thoughtlessness will grow. I may not have fortunes to spend but I do still have money, without access I can’t purchase, so it is that company that is loosing my business, but their insult is still felt.