We never stop doing it again and again

There was a reason behind my sudden decision in dying my hair this weekend, I have a hospital appointment on the 7th of September. When I had my COPD exacerbation my GP thought it was about time that I returned to see the consultant. So three months on from the actual time that I couldn’t stay awake because I was too ill; when I was permanently dripping in sweat from my fever and unable to break that fever; when I was unable to breath because my lungs were filled with water, that persisted in attempting to drown me when I coughed; when I was so clearly confused that I was unable to write or even talk at times, I am at last making going to see the consultant. Adam is going to phone this week to arrange the transport, so I thought it was about time that I started to prepare. I know it is two weeks away, but when you live with a totally unpredictable body, getting ready on any day that allows you within the proceeding month, is a good idea. I am at last starting to get used to that type of logic, as odd as it is, it is the only form that truly works. I know without a doubt that if I waited until the week before, my body would have come up with some form of hell that would have made it impossible. The result of having to go out with two inches of grey hair showing, would have been mortifying and don’t tell me people wouldn’t notice, they would.

Just like everything else that doesn’t fall into my normal activities, I paid the price for it that evening and on into the next day. I didn’t make things any better when I had to stick to a promise I made the weekend before. I stupidly last Saturday evening said to Adam that I had had an idea of suggesting that we had a pizza that night, but I hadn’t carried it through. The look on his face at having missed the possible culinary treat meant that I promised we would have one next weekend. So there I was tired, in pain and trapped. I know I could have explained and just said I wasn’t up to it, but a promise is a promise, so pizza it was. I’m not good with food in the evening, but I decided that as long as I kept it to nothing spicy, which is totally easy for me as I don’t believe that spice belongs anywhere near a pizza and that I continued my vegetarian theme of the last 8 months, I should be OK. I don’t know what it is about meat, which to be honest I have never really eaten a lot of, but recently, it has been like putting a nuclear explosion inside myself. The pain is unbelievable and unbearable. I honestly don’t think my choice of food did any harm, it was the quantity so late in the day. Even though I only had half if it and kept the rest for Sunday lunch, the pain was kicked off and took hours plus morphine to settle. Half a small pizza and I have to reach for morphine so that I could sleep, life really has landed on a different planet.

You would think that my experience from the day before would have stopped me from eating the rest the next day, well you might, I didn’t. I ate it with the same relish I did the day before and without the follow on pain. I ate it as a part of another one of my theories and this one I was reasonably sure was right. At night I sit somewhat crumpled on the settee, during the day I sit upright with good posture at my PC, there was the root of the pain the night before. I had sat there stuffing food into my crumpled body and it didn’t know how or where to put it. The useless mess otherwise called my intestine had quite simply gone into spasms fighting each other throughout. Some were trying to do the normal act of moving food through me, but they were coming up against the impossible locked down spasms ahead. I have been mildly aware of it for a while now, hence the fact that I don’t eat at night. I would far rather be sociable and sit beside Adam than sit at my desk and eat alone, even though we would only be ten feet apart. Don’t get me wrong, lunch wasn’t pain-free, but there was little comparison between the two. I was so chuffed at getting it right that when it was time to move to the settee to sit together and watch TV, I had totally forgotten about pizza at all. Bad mistake.

Half an hour after I sat on the settee, half or all of it, probably the all, were in various parts of me and were all determined to cause as much pain as they possibly could. If anyone out there had been wondering why I eat so little, well there is the answer, eating what anyone would call a reasonable amount of food, spins me into hell. My theory was shot through, even though I don’t have the slightest idea which pain belong to which meal, the result was the same. Portion control really is everything and going forward, will be observed far more closely. The worst of the pain lasted about 3 hours. I know I could have taken a Morphine booster, but I wanted to keep that until I went to bed, sleep is precious. I honestly didn’t know what to do with myself in the first hour. I switched positions, applied pressure, stood up, walked, sat on a hard chair, the settee and even the settee arm, none relieved anything, other than for a few seconds. As a Mum, I can say with total confidence it was like being in labour, without the gas and air or the pethidine. If it had had a blind midwife handy, I would have been screaming for both and a little more on top. When I did take my Morphine it was heaven. This morning it is nothing like as bad, but I am a very long way from comfortable, there are spikes of pain followed by discomfort, then pain again. I don’t know how many days of this I will have to go through, I am guessing probably several. Only time will tell, but I went to the loo three days ago and it’s normally once ever 8 to 12, depending on luck. My stomach kicking off like this always means that my chest goes just about as mad in an attempt to keep it company. Taking a second Morphine booster may not have seemed like a good idea on one hand, but it was necessary on the other. My gamble paid off as even when I took that second one just after 3 am, I passed by the vivid dreams without even noticing them, if they happened. I may have once again woken in the middle of the night by pain cutting my body into pieces, but once I was fully awake I couldn’t miss the fact that that headache was there again, along with the high pitched squeal in my head and the nausea, all of which are still with me this morning. It is going to be one of those days.

Adam cleaned my wheelchair for me yesterday and moved the unit in the kitchen doorway as far back as possible. I took a couple of runs at it while he was there and just as I thought it is a little easier, but it is really going to be a matter of practice. Once I get that correct speed of approach and angle, I will be fine. It honestly is all about learning these things, which Adam wasn’t that convinced about. I may have never driven a car, but Adam has and when I compared it to his beloved ability to park in small spaces, he got it. I am going to take the chair out later today or maybe tomorrow. I want to try all the different things I have thought about that might be issues and work out what can or can’t be done, bought or changed to make life easy. I think one of the hard bits is this settling my brain into the fact that my chair is once again going to be part of my life. I honestly thought that I wouldn’t feel this reluctance to just take it out of the cupboard and keep it out, but that isn’t going to happen yet. I know that I have to get things a perfect as possible before that day arrives, otherwise, I will find every excuse to put it back and leave it there. There is one big fear that I haven’t written about before and this is the big question of is my body up to this. I know until I try, that I can’t answer that, but I am worried that I am going to cause myself a lot of pain.

When I was using my chair full time at work, I wasn’t then getting any pain in my chest, and your chest muscles are pulled this way and that constantly. It is possible that I just won’t due to pain levels be able to get around, especially when my chest is in one of it’s constant spasm phases. Just the strain of pushing myself around could be enough to trigger spasms, I just don’t know. Back then it was magical to me as the center of my pain was in my legs. Unless you are pushing yourself to move at speed or to go up hills with too high an incline, the pull on my thighs is minimal. The pull on your arms and chest is astronomical. Luckily neither are an issue in the house, it will be far more about slow, steady and controlled. Despite all the planning and preparation in the world, chronic illness is the most unpredictable thing you will ever have to face. It is also a total expert when it comes to turning everything you think you know, that you believe you have worked out and every single thing you have ever learned, totally upside down.

Please read my blog from 2 years ago – 31/08/2013 – Everything is going wrong

It is beginning to feel like the entire world is against me, my PC has almost die! It thankfully gave me a message yesterday afternoon saying that the hard drive was about to die, it was so late in the afternoon that there was nothing I could do about any of it, especially as I didn’t have….

What makes me disabled?

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

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

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

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

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

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

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

Weighing up the possibilities

Even when you think you are paying attention to your life, it turns out that you’re not. I really thought that I was aware of how I felt throughout most days and that my health no matter how bad was under some sort of control. It appears that I was wrong. Following my testing out of the landscape of our flat on wheels, I thought it might just be a good idea for me to start checking how many times in a day that I actually found myself not feeling right while I was actually up and about. Those points when my wheelchair would make me feel safer and hopefully would make it so as well. My idea was to get an angle on just how much difference using my wheelchair might actually make to me if I started from the start of next week. I was so sure that I would get a tiny number and it would confirm what I thought I knew, that I wasn’t there yet. What I really hoped was that I would then have a baseline from where I could continue to monitoring until I reached just before that point where even an idiot could see it. I honestly thought that I might find I needed it maybe two or at the most three times a day, the bulk of them in the evening. I was so sure that I was OK the rest of the time and that right now was just a good time to get things organised before things got worse. To my shock, I discovered that I actually feel unsure of my balance or strength for the majority of the day.

This is far from the first time that I have caught myself if you like, lying to myself. Actually, to be honest, I am not to sure about that either. At times, it just feels like I don’t notice things and at others, that I simply forget until I push myself to remember. There is also a very large dose of a desire to believe that I am not as ill as I probably am. Be it a lie, kidding myself or simply forgetting, over the last few year I have found that what I believe and reality are often two quite different things. Yet I was still surprised when I started to count almost as soon as I put my wheelchair back in the cupboard, that I had counted the first one before I even made it back here. I disregarded that one and put it down to my exertion, the first of a string of excuses that I kept finding myself making. Which is probably yet another reason that the truth of my health isn’t always what I personally believe. To my shock as the hours ticked on there was hardly an occasion that I got to my feet that I didn’t have to stop, or reach out for something because I just didn’t feel quite right. When I lay in bed that night I realised that the truth really is that I am not as safe on my feet as I would like to think. I have lived for most of the last 30 years feeling unsteady, so my disregarding it isn’t that surprising. Why would I notice or pay attention to what is in reality just the way life is? Of course, I am just going to pay no attention, but it wasn’t because of that that I had initially taken my wheelchair out. It was because of the way my entire leg would either go weak or even vanish. That feeling and the reality that my legs can and does just disappear was the catalyst.

I know to date that I have only ever had one occasion when both legs went at the same time, clearly potentially a dangerous thing to happen. But it is the growing numbers of times that I have suddenly found myself with one leg missing and I do mean missing. When it started about six months ago, it would just be suddenly weak and it would crumple underneath me. I frequently would find myself trying to push my weight back onto the leg that was still there, but when you are walking it isn’t a natural thing to do, a bit like trying to take two steps in a row with the same leg. When it was just going weak, it was not just liveable it wasn’t that dangerous either. The leg would partially collapse, as though I had taken a step into a hole and then out again and I would grab hold of the nearest thing and shift my balance. Then it started to change and the weakness progressed into not just an inability to taking my weight, but into a complete loss of it all together. When it goes, I can’t feel it and I can’t even be sure where it is. Luckily, it also means I don’t feel the pain as I thump it off things or stub my toes as I swing it in the hope of taking a step to safety. So far it has only lasted for seconds, but seconds are long enough to send me flying into walls, furniture and even the floor. There has been a clear progression and it’s that progression that has prompted my thought of the wheelchair. In just two days, it has happened 3 times.

Some of you will understand when I say it isn’t the fall that frightens me, it is the getting up again, or rather the possibility that I wouldn’t be able to. It has been several years now since I had the strength to get myself back up off my knees. Low cupboards and jobs like lighting the fire, are now things to be avoided, as once I am on even one knee, I am not going to stand again without a huge dose of luck. Once on two knees the luck has run out. If I can manage to stay in that upright position and I can walk on my knees to somewhere I can pull and push myself to stand again, all well and good, but it doesn’t normally go that way. Walking on my knees, doesn’t always work because of my clothes. I have on a couple of occasions found myself suddenly face down on the floor as my legs have become entangled in the baggy, slippy and stretchy material of my pyjamas, which have slowly been pulled from my body by the friction of the carpet. Once I am on the floor well that’s it, the length of time so far to my walking again has been governed by my energy. My arms don’t have the strength to hold me when I try to crawl on all fours or to even get me back up to walking on my knees. Commando crawling is no better than walking on my knees and I haven’t been able to roll for years. All that I can do is an odd combination wriggling and any other movement that my body can manage that will propel me to where I stand a real chance of getting up. Other than that, I am stuck there until rescued. I don’t even want to think about that or what would happen if I were actually injured on my way down there. There is my reason for knowing that the time isn’t far off when my wheelchair will be the only answer.

I have had to make a major shift in thinking. To date, everything has been measured in how much energy it will take. I have a limited supply of the stuff and fatigue has to be avoided at all costs. I have always seen our flat as small enough to manage if I just used every trip to the full, as in having 2 or 3 tasks to complete and not going anywhere just to check something. Thinking about safety, is if I am truthful, has never been in any equation at all. Oddly, as I have been a long time wheelchair user before, I am still going through that reluctance to take that final step and just sit in it and fully accept that it’s where I should be. I did have that cradled feeling when I sat in it the other day, there was that moment where I felt as though it was welcoming me and trying to say “it’ll be alright, we’ve done it before.” OK, yes I’m doing it again, putting human emotions onto items that aren’t even alive and now you know my other secret, I talk for them sometimes as well. I am sure though you understand what I mean and what I felt. I know why I have fought it for the last year or so and my fight has been two-fold. Firstly a reluctance to the fact I thought that we would have to move furniture not just half an inch or so, but even as far as the bin. The second, a fear that still has me wondering, are my arms up to this? It was the loss of my left arm that originally pushed me into being housebound, without two arms, you can’t use a manual wheelchair. It took me two full years to get back enough strength to do anything of importance with it, unfortunately, it hasn’t worked it’s way back up to equal my right arm. In fact, what has happened is that my right arm is now just as weak, hence the fear if either are up to it at all.

Although on the surface you would think that wheelchair takes less energy than walking, that’s just not true. I know from the past that the tone and strength of my upper body was tremendous. It doesn’t just involve your arms and shoulders, it uses everything down to your waist. Spotted another problem yet? I don’t have the slightest idea how either my diaphragm or my intercostal  muscles are going to take the effort. I fear that they might just react by throwing even more spasms, something I really don’t need. There is nothing that I can do but try, but this whole thing could totally backfire.

Please read my blog from 2 years ago – 29/08/2013 – Still ALIVE and still HERE!

This has been the first time I could add a post as my PC decided to die, this means that I am having to totally rebuild it from the very beginning the reinstall of Windows 7 and everything application……..

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……….