One direction

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.


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…..

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…..

Building a desirable future

After my internal expedition in my wheelchair, I was left with much to think about and even more to do. There are more problems than I expected and I know without a doubt, many of them will appear petty and even silly, but as I have said before, if you don’t get things right, they will pull you down and down. I am not prepared to just sit back and let that happen. It appears though that I am the only person on this planet not prepared to land up being reduced to a baby, just because my body is failing.

Just after I had put my wheelchair back in the cupboard, I sat here and started searching online for those essential items for transporting food and drink from the kitchen to here. It didn’t matter what site I entered the solution to an adult not being able to carry a crystal glass from one room to another, is nasty looking capped plastic mugs that I personally wouldn’t actually be happy giving to a baby to drink from. I remembered when Teressa was tiny that I had the same problem back then. She did have a sipper cup for a few months, but I as soon as I found a lidded beaker that meant she was drinking in the way anyone would from a glass, the sipper cup was thrown out. To me as an adult, I don’t see why I should either want or accept to being forced to use items that would reduce me to an even lower level. I have always had this nightmare image of being in hospital with someone trying to get me to eat some kind of mush of a plastic plate with a plastic spoon, then trying to get me to drink out of one of those cups. Be warned world, I’ll starve and die of dehydration before I let either happen.

When I was building my cocoon, one of the things I did was to fill our kitchen cupboards with the best china and crystal I could afford and in volumes that most people wouldn’t even consider. Right now if I had a table big enough, I could set places for 24 people, for at least a three-course meal, including all china, cutlery, water & wine glasses without having any gaps. I didn’t buy it as I intended to do a lot of entertaining, I did it so that we could eat off and drink from quality items. Items that all matched, looked good and would last us both through the entirety of both our lives, a possible 60 years or more, without having to buy anything. Things do get broken, so if I worked it out right, when Adam is in his 80’s, he should still be about to set that same table for at the very least four, if not eight. That way the dishwasher won’t be on all the time. Having said all that, I don’t intend to be the person who manages to break the most of it. I am going to have to find a system that means I can still enjoy and use what I bought, even when Adam isn’t here to carry it around. I have worked out that what I need is a ferry system. A soft bag to place on my lap that I can connect to the chair so it doesn’t slip then I can take the dishes, plus a lidded container for transporting even hot food in safety. For liquids, well I need some sort of bottle, that I can decant from the large bottles in the fridge to refill my glass in the living room. All of which I have to find and buy, and yes, they will all have to look good.

Why does it appear that just because you are disabled and fading, that we aren’t allowed to have taste and dignity? I may turn into a dribbling wreck, but I will still be a person with taste and style. Yet it appears that practicalities are the only consideration, the word “design” is only there in its loosest form. It can’t be that hard to make a glass with a lid that is actually made of glass or better still crystal. The world doesn’t have to be moulded out of the cheapest and nastiest plastic that’s available. If I am unable to hold a glass, then yes I will have to use a mug. I have without difficulty found a crystal mug, they are out there, but one with a lid? Of course not. There is some weird assumption that the fact you can’t hold a glass means that you will drop a mug, so it has to be unbreakable. I fully understand the two handles, that makes sense, but if I am able to hold two handles, I am most likely to be able to not let go with two hands at exactly the same moment. The unbreakable part doesn’t compute. I have already dropped my crystal glasses on odd occasions, oddly enough because I live in a normal home, the distance between me sitting on a chair and the next surface isn’t enough to break even crystal. That next surface is also most likely going to be soft. As in me, cushions, mattress or carpet, not concrete or stone. Believe it or not, glass normally bounces. I can see that plastic might have the weight advantage over crystal, but not over normal fine china or glass, so that doesn’t compute either. Finally, if I am not able to hold a mug, then someone else will be holding it for me so every argument they might raise, has gone. The issue of the sipper cup is just an example, but one that I have blown apart, just as I can with almost everything else I have also seen under the heading of aids.

Look at everything that is made for the disabled and the word stylish, elegant or beautiful can’t be attached to any of it. Why is that? I’ll tell you why, firstly we clearly aren’t a big enough marketplace to make it matter. Secondly, it is the outdated perception that the disabled are incapable of thought and don’t actually matter. Pat them on the head and tell them it was made especially for them and they will be happy and if their not, well they should be. Well we aren’t. Annoyingly I have come face to face with that attitude first when I was working and even worse, from people within the NHS. I know that I’m not alone as one of the things that my searches turned up were blogs, blogs from people just like me, have had enough of been treated like brainless tenth class citizens. There are a few companies and they are a very few, that are trying. Unfortunately, they are trying for the younger element amongst us, sorry but I have no desire to be using anything that has fluorescent colours on them. I can see those aged up to their mid to late twenties really loving them and those in their thirties and early forties saying they do, just because they don’t want to appear stuffy, but the rest of us, I am sure the numbers dwindle rapidly. All I am asking for is simple elegant design, items that wouldn’t appear as totally out of place in my home or any other “normal” home. Why can’t they make grab bars that aren’t thick clumsy white plastic coated monstrosities, elegant and fluid sinuously shaped chrome would do exactly the same job, but with style. Is that really too much to ask for? Chronic illness and disability may make us feel as though we have somehow become aliens on an alien planet, but personally I don’t want to look or live like one.

I remember touching on this briefly twice a couple of years ago when my new perching stool arrived. It’s standard NHS, white frame with a brown plastic seat, clumpy and unbelievably ugly. As ugly as all the other things that the OT’s have tried to force onto me over the years, including their so called “flesh coloured” braces. I admit my life might have been made easier if I had accepted all they offered, but the damage it would have done to my emotional well-being would have more than undone any good. I haven’t given up on finding what I am looking for, but, and this is a big but, it is going to have to be done in small sections. Yesterday, I found myself becoming more and more frustrated by what I was looking at. From what should have been simple aids, right through to the most major one like hoists and all other equipment that would require adaptations, all of it was ugly and so unnecessarily. I found myself getting more and more frustrated and wound up by it. I even screamed at the PC at one point as I couldn’t believe what the outside world was trying to force onto me. I spend my life trying to stay calm and placid, this entire process is anything but.

Clearly I am going to have to break it all down, starting with exactly what needs to be done to make it possible to use my wheelchair here in the flat. I don’t know exactly how long I have until my legs won’t want to carry me around at all, what I do know is I have to get this done before I’m stuck in my chair struggling.

From first step to none

I am still trying to get my head around what I did yesterday afternoon. I went to the hall cupboard and brought out my wheelchair. I haven’t even sat in it for years, as I have never even tried to use it in the house. I had dismissed as not only not needed and just far too difficult to manoeuvre around. As long as my legs could hold me and as long as I could manage by catching hold of furniture and walls, well why would I want to make life more complicated. When I first got it I was stunned at the way it opened up the world for me and it has been fixed in my mind that it would be this amazing contraption that could take me anywhere. Within weeks, my dream had been destroyed by reality. A reality of cambered pavements, badly parked cars, unrequired steps and surfaces that were anything but flat, brought my world back down in size rapidly. Most of all, it allowed me to work for several years longer than I would have been able too. A call centre is a big building and I was required to be here, there and everywhere, that was until I fixed everything to work for a bank of PC’s which allowed me to be anywhere, even from home. The impact of being housebound was tempered by just doing that, sitting here working daily, life continued as normal while my wheelchair sat in the cupboard, doing nothing but getting in Adams way.

I don’t know exactly what inspired me to go and fetch it today, or to sit in it to discover just how much of our home was really assessable, but that was exactly what I did. First I headed to the kitchen, it looked easy enough but it was a lot tighter than I expected. I had to tweak my approach over and over and getting back out was no easier. Our flat is Victorian and defiantly not designed for the possibility of someone in a manual wheelchair and I have made it even less so. Right at the doorway of our kitchen is a free standing unit that holds a million and one things, things that can’t just be thrown out to allow me to move around. But I checked closely and it could move back about 2 centimetres, not much I know, but it would make the difference between difficult and possible with care. Of course, all of the counters are far too high for me and all of the cupboard that are on the wall, totally inaccessible. As I don’t exactly cook, there really isn’t a problem with the cooker, but should I want to cook something when Adam isn’t here, well I can still manage the microwave. Our kitchen is spacious and I just couldn’t resist when I was in there doing a couple of the moves I had mastered years ago just for the fun of it. There is nothing like the agility you acquire once you have been using a chair for a while, turning on a sixpence at speed is just one of them.

The bathroom I knew before I even tried that I would have to remove the bathroom scale, not much of a loss as they haven’t worked for about a year. I can’t make it all the way to the toilet, as the room is half its width at the back. There’s a sort of passage of with a length of about three feet between where the chair would have to stop and the toilet itself, thanks to the walls it would be easy to manage on my feet. It took a lot of concentration to reverse my way back out of the room as there just isn’t an easy way to turn the chair around. The bedroom is the only room where there are space issues. Clearly it had been an add-on long after the flats were built. It looks as though at one time the kitchen which would have been the main living area and the sleeping area for part of the family, was even bigger still. With the fashion for indoor bathrooms and toilets, they simply sliced off the smallest space possible of the biggest room.

Our bedroom supplies once again has plenty of space and, unfortunately, a white carpet, which meant I didn’t even try to go in there this time. The chair hasn’t been washed since it was last out, and the once white tires are rather grey-looking and require a good bleaching session before it went over that threshold. No such problem here in the living room, just a slightly tighter entrance than I would like, but one I can manage. I know Adams answer would be to move or throw out the nest of tables at the end of the settee, but I bought them for that very space and there they will stay. Again though thanks to the shape of the room, there is one area that I can’t get to in my chair. I can’t get up here to my PC. This back section of the room is a large alcove, which is actually raised about 8 inches higher than the rest of the room. Why it was done I don’t know, but whoever did it, created the perfect place to turn into a sort of office space. Neither the step or the distance are of any issue, as every inch I would have to walk has furniture to lean on. The rest of the room has no problems to it at all, I can maneuver with ease and access everything.

I knew before I even sat down in my chair, the points I would have problems with, once you have been in a chair, you become quite good at knowing where it can fit and where it can’t. All the points, where I was caught, were the points I already knew would be a problem. But it wasn’t those issues that I was wanting to test, I wanted to know would it be feasible when it comes to everyday life and would it truly make anything easier. The answer, I honestly don’t know. Right now, it would make life more difficult, there are things that need to be fixed before I even think any further about getting Adam to bleach the wheels. If I was sat in my chair now going to fetch a drink, I would have to make two trips, one to fetch the bottle from the fridge and another to take it back. You can’t carry a full glass and push your chair. That’s just one example of “a fix it first problem” that I have noted. I can already see that I need to put a lot more thought into my everyday life, right down to the minutest detail and see how a wheelchair would change it or what changes I would have to make and accept.

Right now, I don’t think I need or am ready to sit in my chair full time. I am quite sure that Adam would be happier if I did, as then when he was out he wouldn’t have to be constantly worried about me falling over. Although when I lowered myself into the chair I did feel firstly very at home, it was like slipping into an old favourite pair of jeans. Comfortable, well fitting and somehow right, it was the somehow right that answered my question as to why I was even doing it. Despite being pig-headed and not ready to accept that it is a not too distant reality, it is just that a reality I am closer to, than ever before. The weakness in my legs is growing and the occasions that they are just disappearing under me are growing as well. I already know that if I do hit the floor the whole process of getting back to my feet is a total nightmare. I am becoming wary of almost every step I take and that to me says a lot. Now is the time to start planning, to make sure that when the transition happens, it is all in place and that I am not going to find myself a million times a day, exasperated and just getting to my feet because I have no other option. Almost every kitchen cupboard is going to have to be rearranged things that I use, even those that would be on the occasional list need to be accessible.

Returning to wheels isn’t just a case of taking the chair out of the cupboard, it a huge commitment and a huge psychological change that has to be made. I guess that I knew in the back of my mind that this was really the only answer. I had thought of calling in the OT’s but in reality, there is nothing they can do to help. No walking frame, walking sticks or anything else, will stop my legs from collapsing. A stick or frame might actually be a bigger danger than of any assistance. I honestly think they would cause me more damage as I got caught up in them and wouldn’t help me once I was on the floor. I am resigned to the fact that my chair is the only answer, but it has to be done right, or I will discard it, I know what I am like. So, it time to start thinking and planning, time to make that first steps to none.

Please read my blog from 2 years ago – 27/08/2013 – Discoveries and losses

I never thought until today just how many who read what I write will actually not understand every word of it, I suppose it is a position that is compounded many facts. I am aware that I have a large number of Americans who read and although we share a language……….

The floor or me

With my lunch in hand, I was heading back to the living room inspired by the thought of my two softly fried eggs, with their yokes spreading over my pancakes and dripping as I ate them. Half way across the hall, suddenly my left leg wasn’t holding me up any longer. I couldn’t reach that point where my knee should take over, straightening my leg and taking fully my weight. I could reach nothing beyond a rather odd bent seated position. I managed to bring my right leg forwards and avoided what would have been the next position, on the floor. Restoring balance was essential, just as essential as not letting my eggs slide off my plate onto the carpet. I was in clear danger of falling either because my legs just weren’t going to hold me, or the fact that I didn’t have a free hand to hold out to the wall while I regained normality. Luckily, Adam was digging about in the fridge and couldn’t see what was happening, otherwise he would have shouted which would have just made things worse. When you are fighting with your body, the last thing you need is someone taking your attention away from your dilemma. Both of my legs just felt wrong. Weak and as though neither had the strength to make it the rest of the way. There wasn’t any choice though and I had to make it through the doorway, after that, well there were plenty of spots where I could stop and sit for a second while it all improved.

The hallway has been my nemesis for years. There is nothing out there to hold onto, lean on or sit on and nowhere to add one. There is only one space that would assist with a grab rail, but it is right above the only storage heater in the house. Without that heater, the house would freeze in the winter, but once hot, well the grab rail would lose its purpose. You can’t hold onto a metal rail that is over 60 degrees. It was in the hallway that I discovered that I could no longer crawl on all fours. Something an 8-month-old can do was now impossible without crashing face first into the floor as my arms won’t hold me up any longer. Neither now have that strength. Rolling has been off my standard list of way to move around even longer than crawling, but I can still commando crawl. Loose pyjamas make it not only ungainly but difficult as my trousers keep sliding off. Any other room in the house is fine. There are things all over the place that I can rescue myself with. If I do hit the floor well I am always close to something that I can pull myself back up onto my feet with. The hallway is a void that I can’t bypass and has to be crossed several times a day. Fall out there and it is going to be a painful, slow and long time before my feet are back where they should be, blow me, taking my weight.

All I had to take were four more steps, that was all I needed. Step one found cringing in sudden sharp pain that was a total shock. I had stubbed all my toes on my left foot off the carpet. Just as my leg has failed under me, my foot was now dropped and not working properly. The next steps contained a growing fear, but momentum built up from my natural desperation to find stability took me through them. Right leg fine, left leg still didn’t have a knee, my leg was straighter, probably because I had more dragged and flung it ahead of me than taken a controlled step. Right leg again and I had made it. All that I had to do was swing myself around the open door and the arm of the small settee where I could rest was waiting. I sat there looking in wonder at the still complete plate of food that was still there in my hand. My desperation to not send it flying across the hallway making a mess of the carpet, or worse the arm of our white settee I had seen ahead of me, had saved me as well. Being a perfectionist, I maybe can’t do anything about cleaning our home any longer, but the drive to not make a mess has saved me many times. To date, I have never hit the floor while carrying anything. Maybe I should just carry a glass of coke with me where ever I go. I fear though that would be a theory that would go out of its way to prove me wrong.

I don’t know what caused it, but my legs, my left more than my right one, just didn’t feel as though they were there, and clearly didn’t have the strength to hold me. It’s far from the first time this has happened. It’s been part of my life for many years, but lately, well lately it is happening more and more. Although I have been trying not to, I am beginning to think that I have a real problem emerging. There is no longer a time of day or location where this or something similar has happened. Ever since my COPD exacerbation I have had weak legs. I kept telling myself that as my general strength returned so would my legs. Unfortunately, it has been the total opposite. It doesn’t happen every day, but it can equally happen five or six times in the same day. Some dramatic like yesterday’s lunchtime felt, to the most frequent when standing up from the sitting for a while on the settee. In fact, thinking about it, that is the place that I first felt it clearly and strongly that I just couldn’t stand unaided. Standing up, be it from a chair, my bed or even the toilet is a danger moment in one respect, but equally as I have somewhere to sit again a safe danger. That first moment of standing is the time that I feel it the most. It is like my legs are made of plasticine, clay or blancmange. Until I am vertical, I just don’t know which I will find. This recent addition of it happening while I am standing or walking isn’t good news, progression never is. I have lost count of the number of times that it has happened and that is only in the past week. How many times it has happened in the past month, well I would prefer not to think about it. On the good side, I have only failed totally and found myself on the floor twice because of it so far. One I mentioned, it was in the bedroom and I landed up sliding down the wall by the door. The other was in the kitchen, painless and recoverable, if there is a good place to fall, for me it is the kitchen. The room is so big, that I normally manage to twist so that I hit nothing other than the floor.

Right now I am not sure what I am going to do about it. I know for a fact that my walking stick is totally useless. Firstly because it has been behind several more serious accidents that I would have had if I hadn’t had it with me. Trust me, getting a walking stick caught in your clothing and making you fall, when there was no other reason, just isn’t helpful, Nor is getting the stick caught between my legs as I twisted and fell, it isn’t helpful and it is painful. My final reason should be clear to all, my arms can’t hold me when I crawl, they aren’t going to have the strength individually to support me on the wobbly point of a walking stick. I have already had the OT out here to assess our home for a wheelchair, it can’t be done. Our house is totally unsuitable for either a slim manual or electric. All our doorways are fine other than the bathroom, it is totally useless, so are our floor surfaces. The floors could be changed, but it’s impossible to change that door, it’s slim for a reason, they couldn’t make it any wider.

I am going to give it another month to see what happens. There is always a chance that things will improve, no matter how unlikely I believe that chance to be. If it suddenly gets worse, then yes I will call for help, but I don’t think that I am that far away from having to have some kind of walker, be it on wheels or just a frame. Falling held no fear for me in the past as I could get up. When you can’t just stand up and the whole issue of getting to somewhere that you can is a nightmare, everything changes. I could cope without much thought when it was a blue moon issue, that moon has gone and I need to start thinking about this with a lot more reality thrown in.

Please read my blog from 2 years ago – 26/07/2013 – No longer a book

I haven’t the slightest idea why, but today has a feeling to it that somehow means I am playing catch-up, which is complete madness as I have nothing to catch-up with. I love odd sensations like that, when somewhere in the back of your mind something is triggered and try as you might, there is neither….