Forgotten but not gone, yet

Posted on March 23, 2016 by livinginalimitedword

I mentioned a couple of weeks ago that I was having problems pushing my wheelchair. My grip in my left hand has been weak ever since my arm died and returned, and using my chair, was taking tremendous effort. I ordered some tiny self-adhesive strips of clear rubberised type plastic, that have a serrated upper surface. Their true intention is to be stuck on to the arms of coathangers, so that when you hang a piece of clothing on them, they don’t slip off, but I was sure that they would work for my purpose. They arrived the other day and I set about attaching them, which was actually a lot easier than I expected. My dexterity got in the way of taking them off the sheets they arrived on, but not in attaching them. I sat on the settee feeling rather smug with my results, that was until I sat on my chair. Somehow, I had attached them to the wrong push wheel. They were under my right hand, not my left. I felt so stupid, but I am used to doing things like that, so I hung my head and pushed myself towards the kitchen. I hadn’t actually made it out of the living room when I stopped and did this sort of mental check, that they really were on the wrong side. I was stunned, I was finding moving my chair so much easier, yet they were truly there, under my good hand. It appears that my good hand isn’t actually as good as I thought. Somewhere along the line, I have lost the grip in both of them. Life is like that, well, at least, mine is. I have now added the strips to the other wheel and it is honestly like having a new chair.

Clearly, the strips I have attached, don’t have a strong enough adhesive that would hold them in place for outside use, but if they were attached with superglue, I’m sure they would do the job. It leaves me with a question, one that has been long with me, why don’t they make the inside of the push wheel with a soft cushioned rubber attached, so that anyone can grip it. Actually, I know the answer to that one, it would mean that a chair would cost more. The answer I know without a doubt that I would get from the NHS for my personal problems, is, that I should wear gloves. Sounds simple I know, but it isn’t. For a start, gloves make your hands sweat, they also would have to be taken on and off continually, and with my dexterity, would just be a constant annoyance. Decisions on design of aids for the disabled should be made by the users, not the makers or suppliers. In all honesty, would you put gloves on every time you wanted to go the loo or kitchen, then take them off once there, and put them on again to return? If you answered yes, well I know you wouldn’t. Even if they helped, without a doubt, they would sit unused, more than used. It’s human nature, we’re lazy, we want things done in a fashion that makes our lives easier, not harder.

It appears that my extremities are determined to desert me. The podiatrist has just been to see me this morning, and she was shocked that I hadn’t phoned her to come out sooner. Apparently, I had seven points where my nails were cutting deeply into my skin, I hadn’t felt a thing. My feet were deformed at birth, so all my toes other than my big toe are permanently curled, some worse than others. Having said that, four of the points were on my big toes. Either side of both nails were deeply embedded into the skin. This was without a doubt the longest that she had ever been in my house, it took ages for her to undo the damage. Totally honestly, I had felt nothing until she started slicing into my skin. I thought that the fact that I hadn’t been in pain, was a sign that Adam now drying my feet for me, and putting on some cream, was making a difference. It hadn’t occurred to me that the reason I had been pain-free, was actually because the feeling is almost totally gone. When I did feel her, was when she was pushing some tool that looked as though it belonged in a dentist surgery, deep into the skin on the side of one big toe. Despite her pointing out where the points were, I could only feel three of them, two of them, was mild recognition, the rest are dead.

When you find yourself immobile, the importance of our feet dwindles. They become just something that are attached to the bottom of our legs. Throughout my entire life, I have had an issue with ingrowing nails, or nails that bit their way into their neighbouring toes. So much so, that I didn’t really think anything of it, from childhood on, having painful feet was normal. As I aged, well the problems were compounded by the same desire that most women have, beautiful shoes, I freely admit, that I made them worse, but that is as normal as admitting that I’m human. I think it was somewhere around the day that I knew my stilettoes were being put away for the last time, that I stopped caring about my feet. I encased them in soft black suede knee high boots, both summer and winter, then I forgot them. The less I cared, the worse they got, but I could deal with them, then suddenly, I couldn’t. I couldn’t bend over, or bring my foot up to sit on my thigh, I could do nothing of any good for them. Adam tried, but when I called for the help of the podiatrist, he was told to stop trying to cut them. My feet are now dying, which brings up an array of issues, as if I can’t feel them, then I don’t know how injured they are. If an infection is sitting as deeply in my skin as the nails are, or if worse still, that infection is spreading. My feet are now not just useless but they are now a danger zone.

Her concerns didn’t stop at my feet, she went on to talk about my legs as well. Even she could see what I had spotted the other day when I was in the shower, I am overloaded with fluid. Not walking is causing it to pool which isn’t good. Luckily, I already have Frusemide in the house and by chance, I had taken a dose this morning. I can’t sit with my feet up any longer, it simply isn’t physically possible. The muscles are tightening and that stretched out in front of me position, is something I can feel the pain from. All I can do is wear elasticated socks, and keep taking the medicine. It isn’t quite a full five months since I brought my wheelchair out of the cupboard and gave up trying to walk. Five months and my lower half has given up the ghost. I can’t help wondering what they will be like, in another five.

Please read my blog from 2 years ago today – 23/03/2014 – Where is my body?

I used to think that it would be impossible for me to live past the age of 20, people of that age seemed so old and so useless that how could I ever land up being like them, mind you I was only about 13 at the time. I know from talking to others over the years that almost everyone has that feeling, not just when they are 13, but on through their lives adjusting their maximum age upwards, as they pass their last horrific age. There seems to be something inborn in us that needs to put a limit to our lives for whatever reasons we have at the time, but mostly because it is our view of being old, of not having the verve and excitement for life that we believe ourselves to have, we just can’t see ourselves as anything less than we are at that moment. You would think…..

I so need one

Posted on November 25, 2015 by livinginalimitedword

The thief of life is at it again. I am so lost and confused this week. I can’t even hold onto the day of the week, for more than a few minutes. It feels as though, I have spent the whole week checking the calendar, or double checking what I am doing and why. I can deal with pain, with spasms, all the different memory problems, with any of the medical symptoms of my gang of assailants, but frustration drives me up the wall. Yes, I know, that is the nature of frustration, but it’s just so frustrating. It doesn’t matter how many times, I stop, relax, then start again, it just reappears, which winds me up even more. This whole week has been that way. It doesn’t matter that I have had a good nights sleep. That I’m as close to rested as I get. That I’m happy and ready for another day. None of that matters when you can’t remember if this is Tuesday, Thursday or even the one in between, that I couldn’t remember the name of earlier. Frustration has already found its way in. My PRMS really has got this whole game of illness polished brighter than any diamond. It needs stress to thrive, all the stress that I have over the years strived to remove, item by item. I had taken it’s greatest triggers and smashed them into a fine powder. So what does it do, it removes even more of my memory, it truly is a devious and clever opponent, as frustration, creates it food source with ease.

Frustration and memory are the perfect combination. It’s rare for me to get frustrated by my body, well, occasionally, as yes I am human. But there is no competition between them, memory is the perfect trigger, and wins hands down. At times, it can be perfectly clear. Last night, I was watching “Eastenders” and I could with ease, remember small details, from an episode that I saw years ago. Two seconds later, I couldn’t remember the name of the character I was looking at, or their current storyline. How can one brain do that? How can it send me somewhere to do something, then decide to wipe all knowledge of why I moved at all? Why can it cut out huge sections of my own life, when I need them, just for them to be there later on? How can it steal my words from my mouth? Why doesn’t it tell me that I put lunch on to cook over an hour ago and that it’s now quietly burning? How can it leave me lost, confused and occasionally terrified, by the tiniest change in my own home? How can it be so contrary about why, what or when? How can it do all of these things and so much more? For someone who adores perfection and precision in everything, it is the cruellest trick my PRMS could have chosen, from the list of possibilities. But the cruellest bit, the bit that makes it frustrating, the fact I am 100% aware of it doing them all.

I don’t know just what has upset me this week. Things had actually been quite a bit better recently, which rightly or wrongly, I have been putting down to the fact my breathing has improved. Within a couple of weeks of having my nebuliser and the new inhalers, I couldn’t help but notice that especially, my speech improved. It might just have been coincidence, but I really don’t think so. I know that I have I said it before, months ago, that I was sure my brain wasn’t receiving enough oxygen all of the time. It was, though, just my opinion and I have nothing to prove it was my COPD, or even back it up, other than my experience. Not only has my speech been clearer, but those long gaps while I searched for the next word, have been more than halved. My mind has been less fuzzed and far quicker, I just generally felt more like myself. When you have a shopping list collections of illness to choose from, what is causing what, or has been the trigger for anything, is almost impossible to workout. Add in the fact that illness is phasic, the picture is even more confused. What I do know is this. Right now, my brain still doesn’t feel fuzzed like it was pre-nebuliser, foggy at times, yes, but not that almost audible fuzz. My thought processing is sharper and my speech clearer than pre-nebuliser. My memory has fallen apart again, so this time, I’m blaming either my PRMS, or my Fibro, but my money is on the PRMS.

On the surface, my memory problems sound like nothing in the great scheme of things. It’s only when you actually take a few moments and think of the realities of their effect, that part of my frustration becomes even more understandable. Every time I forget something that is in another room, means I have to make another trip to fetch it. Every trip, planned or not, seeps away at my energy reserves, increases the fatigue levels in my arm muscles and frequently triggers spasms in my intercostal muscles. It also means that pressure is being put onto my hands, which increases the chance that my thumb and knuckle joint will dislocate, either then or later. Yesterday alone, I was forced into making 8 more trips than I really should have needed to complete. On Monday, it was more than double that. When you open up that picture and look inside, my agitation and frustration, starts to make more sense. The more frustrated I get by it, the more I seem to forget. For new readers, please don’t suggest any of those so-called memory aids, been there, done that, doesn’t work. Yesterday afternoon, I had to clip my nap as I really couldn’t put off having a shower. My shower was probably the only thing that went smoothly yesterday, and actually, took less time than expected. Because of how I was feeling, I headed back to my bed just to try and spend half an hour totally relaxed, but not asleep. My plan backfired, despite my having sat here, double checking, that I really did have half an hour to spare when I got up, I discovered that I had got the time totally wrong. I hadn’t just looked at the time on my PC, I double checked it by the alarm clock in the bedroom. Somehow my brain had done what it so often does, it had tricked me. My relaxation was wiped out totally, my frustration and stress levels shot through the roof. I stopped trusting myself with time a long time ago, but when Adam isn’t here to confirm things for me, this is what happens. If all of that isn’t enough, I started my day by going through just half of my morning medications. I used my nebuliser and inhalers but totally forgot, for two hours, until my pain levels were rising, to take all of my tablets, every single one.

If my brain would just hold onto what it is supposed to be doing, this week, would have been a totally different story. I know we are only one Wednesday, yes, I checked. But I have been more tired than I should be and I have spent so much time just cursing myself, over time wasted and unavoidable confusion. My frustration values, clearly have been high, but there really isn’t anything I can do about it and it’s worrying. As I said early, frustration breeds stress, and stress breeds any problem you can think of that my health has ever done. I can see that the rest of this week is just going to be one long battle with the whole thing. I have frequently joked, “Who needs a brain”, well this week, that joke has run out. All I want right now, is even half of one, as long as it’s the half that seems to be missing.

Please read my blog from 2 years ago today – 25/11/2013 – The hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip……

Ignorance can be bliss

Posted on October 25, 2015 by livinginalimitedword

Sometimes we are given pieces of information, even about ourselves, that we dismiss, put to one side labelled, “interesting but so what”. That was something I did 14 years ago when I was in the midst of being diagnosed with Fibromyalgia. I actually left that day with two diagnoses, firstly, the one that I left concerned about and desperate to investigate, Fibromyalgia, I had never heard of it, nor did I realise just what its potential was. I admit freely though that just like the second one, I found myself within the year, dismissing it, that was when I was told I also had PRMS. So what about that second one, the one I though and put down as just interesting, well that was HMS. To me, those three letters meant only one thing and as far as I could tell, I hadn’t suddenly been transformed into a large grey hulk. For those out there who don’t know what it is, any more than I did when I heard the letters, it stands for Hypermobility Syndrome. In English, my joints have the ability to not stop where normal joints do, but to go past that stop point. Most of my joints can go past that “normal” point, but to me and many others, it had always been known as “double jointed”. Clearly, I had been aware of it for most of my life. You can’t miss things like people pretending to be sick or cringing when you do things with your hands, that shouldn’t be possible. It was kind of my party trick as a kid, I just couldn’t resist it. I used to be able to take a fingertip and push it round to settle in the gap between the next two neighbouring finger. It looked like I was tying my fingers in knots, not to mention that without trying at all, I could raise my fingers from level with my hand backwards and upwards to what should be an impossible angle. Other than my hands, I could also do things like scratch my own back by first raising my arm above my head, then reaching downwards to my spine. Then there was my favourite one, putting my right arm above my head again, but this time, approaching from the left side of my head, scratching my right ear. All great tricks when you’re a kid, but not of any importance at all, until now. I am now paying for it.

I had forgotten that the last time I had to use my wheelchair, that I had a lot of problems with the joints in my fingers. Nothing terrible, they just got really sore and tight feeling, their mobility has also become restricted and somewhat stiff. I guess it’s a little like arthritis and the more I use my chair in any one day, the worse it is. I was already having pains in my hands, I believed it was from all the typing I do. so adding in the pain from my chair, well evenings are uncomfortable things. If that had been it, I wouldn’t be writing this at all. What has prompted this, is the pain that I am suddenly getting and my concern to what is happening to my thumbs. Using a manual chair, is one of the few things I can think of, that actually puts pressure on your thumbs. Other than clearly using them for gripping things, thumbs don’t do much that is strenuous, so there isn’t much to annoy them. I have known loads of people with arthritis and similar conditions, but not once have I been aware of them talking about pain in their thumb joints. It is always their fingers that I have seen them massaging and holding on to. Thumbs, always seem to be separate in every way. My thumb joints are hurting and they are doing one other thing as well, they are jumping partially out of joint. Anything, that means I tuck my thumb under my palm, is almost instantly painful. It’s not the pain that I am finding upsetting, it is on the movement back out, that gets to me, as there is this distinct and almost self-nauseating crunch of bone on bone, as it snaps back into the correct location. It seems as though my childhood pranks of upsetting others, is now directed at myself, but I’m not trying to do anything, out of the normal. I’m reasonably sure that the pressure being put on them when I am using my chair is loosening the joints slightly from their grown up stability of age. I frequently feel them going in the other direction by just a tiny amount, especially if I manage to get myself stuck somewhere. Luckily, that is something that is happening less and less, but it appears, that there is nothing in life, that doesn’t come back to bite you eventually.

I know that without a doubt that I am lucky in the fact that this only ever seems to have badly affected my arms and hands. Having said that, I did once dislocate my knee, but that was after falling downstairs, so I dismissed that one totally. When I was young, my ankles might well have been made of rubber, as I was forever twisting them. It even got to the point, that I had a couple of years, where A&E was sending me back repeatedly to the physio. Once I was out of my teens, it all appeared to stop. Although no one ever said anything, I sort of told myself that it had all been about tendons and the process of growing into my own body. I had reached the height of 5 ft 9 inches very rapidly when I was just 12, and I never grew again, so it made some sort of logic. When the Dr told me that I had HMS and I had read a little about it, I realised the truth. In fact, it was only a few weeks ago, that I suddenly made sense out of something Teressa had told me. She had been talking about the problems she has with her knees, something she had mentioned before, but I hadn’t put them together. Her knees jump out of joint and has to head to the hospital to have them put back, it had happened again. At the time, I told her to blame her father, not me, as my knees are fine, but I had totally forgotten about the HMS. It wasn’t until my hands started to hurt again, that I remembered. I guess, just like her beautifully curled toes, this is something else, that my genes have given her. Sorry. It also, make sense out my Mothers constant complaints about her hands, and the fact that her doctor, quite wrongly in her opinion, that she didn’t have Arthritis. I just thought at the time, it was her hypochondria, it may well be, that she too has it, just no one spotted the real culprit.

That is one of the problems with modern medicine, it is constantly giving names, to things that we once thought was just one of those things. It is really not surprising that current generations, think themselves sick. I am quite sure that all the conditions that we have these days, all our ancestors did too. Until recently, the family doctor didn’t have the means to diagnose us, those that did only saw the most wealthy and they were happy to pamper them. The average person out there just got on with it, they didn’t complain, because who was going to listen to them. They couldn’t afford to be pampered and when everyone around you is living with the same, it is just normal. Pain was just part of life and you got on with it. For many, that hasn’t changed, as I am perfectly sure that the reason that I can say I have a list of 13 or 14, I can’t even remember the right number now, but all different conditions, is because I spent so long trying to get to the main problem, my PRMS diagnosed.When you carry out the wrong tests, you get the wrong answer and in my case, that meant loads of correct but at the same time incorrect diagnoses.

It wouldn’t surprise me at all if a random group were taken off the street, and tested for everything, that probably around a quarter of them, would be diagnosed with things they didn’t even know they had. I’m also quite sure, if I was put in that group, they would still find more for me too. For a lot of people, just being told that they have this or that syndrome or condition, would be enough, to start acting ill, to use it as an excuse for not doing this or that. I’m not saying they would do it on purpose, but we all associate conditions with illness, only those who live with them for a long time, know that isn’t true. But follow the logical trail, start telling someone they have this or that, then add on another and another, and they will slowly become ill. Unlike our ancestors who appeared healthy, but weren’t, they might have the same conditions, but they would be ill, just because they know. In a way, we have become victims of the very thing that was created to take care of us. If you want proof, then just think of all the people you have ever known, now add the common cold. There will be a section of those people who act as though they are dying and a section, who don’t even seem to notice it, they just get on with life. Imagine if you told those same people that they had a “syndrome” anyone you choose, what do you think their instant reaction would be, without even knowing what it really is? As they say, ignorance is bliss, not always true, but for some, I totally believe that it is, especially when it comes to their health.

I am a firm believer that people have the right to know exactly what is going on in our own bodies, but I do fully understand the doctors who instantly roll their eyes, when someone says they have “checked it online”. In this age of information at our fingertips, there is a huge problem of getting that information wrong, and quite simply knowing too much for our own good. Humans are suggestible, we all instantly read the worse case scenario and ignore the line that says, this applies only to a few, or we tell ourselves, we are the few. In some ways, I am glad that it took my doctors nearly 20 years to diagnose my PRMS, as by the time they did, I already knew how to live with it, as though it didn’t exist. My health didn’t get worse post diagnosis, nor did I suddenly start acting as though it had. Nothing changed for the first couple of years, then it picking up in speed, but post diagnosis, I just got on with life as I did before. I can see how just learning to live when you are told such a thing, can be hard mentally, but the truth is, nothing has changed overnight, you just have a name for your monster. It also doesn’t matter how many monsters you have, you are still you, that is actually the hard lesson to learn, not that you are ill, that takes care of itself, whether we like it or not.

Please read my blog from 2 years ago today – 25/10/2013 – Is this right?

I don’t think I have had a single hour free from the pain or at best discomfort from my diaphragm in the past month. At it’s best level it is just how it is right now and of course, this is probably the most difficult to….

Two weeks on: Without permission

Posted on September 26, 2015 by livinginalimitedword

At times being in a wheelchair, is just like sitting in a shopping trolley, you know what direction you are pointing it, but it’s not so certain where you will land up. This house requires delicate tiny motions that let you edge past each obstacle and doorway, but the amazing Victorian uneven floors and the array of places those front wheels can get caught, can leave you anywhere but where you intended. There isn’t a single journey that is anywhere close to a straight line, and even when you can see one, somehow you land up having to go in circles. I spend more time lining up the chair in the hope that I touch nothing other than the floor than I do travelling over it. It should be simple, sit there in the chair and point it where you want to go. So OK, yes, there are two 45 degree angles to deal with, but how is it that even before I get there, I have to turn another 180 one, just so that I don’t bounce off the settee and the dresser. I have discovered something new about wheelchairs that despite spending nearly 4 years in this very one outside of the house, that I never knew existed, it has an incredibly warped sense of humour. I have lost count of how many times I have been heading for the loo at speed, only to make it to the bathroom, stand up to transfer and it has grabbed hold on my dressing gown, stopping me midway. Yes, I do learn, but it changes which bit, where and how every time.

Don’t get me wrong, switching from trying to walk and being sat in my rediscovered friend is such a huge change to my life, and I wouldn’t go back now. Apart from my face, which clearly has nothing to do with my chair, this is the best week I have had in a long while. I have been incredibly tired some days, but all apart from one, it was a good tired. That knawing and relentless fatigue in my legs has been reduced, and although all the other pains are still there, somehow it is a cleaner pain, less thick, sludgy and heavy one. Granted, a lot of that fatigue has transferred itself into my arms, but the overall change to my legs alone makes it worth it. I don’t want to talk too soon, but as the days are passing my arms do seem to be slowly getting used to it. As is the norm with my body, it is my left arm that is complaining the worst. My upper arm is almost permanently in pain, but it was even before the chair came out of the cupboard. It is a little like it has a timer attached and is willing to play the game and supply the engine power until around 5 pm, then it has had enough. Without a doubt, the best thing has to be just knowing that every movement isn’t going to put me in danger of being flat on my face and marooned. Trust me, that is a wonderful feeling and makes up for the earlier feelings of having lost a huge battle.

There is so much that we didn’t plan properly for. Tasks that didn’t enter either of our heads when it came to how I would manage on four wheels rather than two legs. What we did have sorted in advance has worked really well, but things like making my Psyllium pancakes, needs to be totally rewritten in every way, other than the pancake recipe that is. You don’t realise just how many small silly trips you make around your kitchen whilst preparing anything to eat until you find yourself seeing the whole thing from a new perspective. I found the need to be on my feet, more than once, as no matter how well thought out, crossing the kitchen with a pint of hot/warm milk and melted butter, can’t be done in a chair. Having done it all on Wednesday, I now know without a doubt that this is going to be a task that has to be shared with Adam and not attempted alone. Adam, as always has offered to do it all by himself, but to me that isn’t the answer. It took me 3 months to get the recipe right and although I trust Adam to actually cook them, something he has done part of on the last two occasions, actually putting it all together, not yet. Scales and instructions, just wouldn’t cut it. One of the things I learnt over years of baking is that the feel of a mix tells you far more than the recipe ever could and that feel has to be learnt.

There is one thing that nearly two weeks on that I just don’t seem to be getting to grips with, is how best to open a door that is closed behind me. Our bathroom is really an L-shaped passageway. There isn’t the slightest chance of turning round in it, so it has to be forward in, backward out. Grabbing the door handle means you are almost up against the door and with only one other hand to deal with my shopping trolly. You have to move forwards somehow single handed if you’re going to open that door at all, whilst dealing with the issue of the door catching as it opens onto those large wheels sticking out from behind you. Plus thanks to the placement of the shower, towel rail and the sink unit, I am also caught in the tightest space the entire house supplies, and one where the front wheels catch over and over again. I am developing a true love-hate relationship with our bathroom and I have always loved it. Without a doubt, every home is going to have one of those spots, and even the most experienced wheelchair user is going to have issues. You can go and walk around your house right now and you won’t spot them, or appreciate just how difficult they are. I am getting better at it, but I am never going to love it or even see it as easy. What worries me, is how as things progress, will I be able to manage it at all.

So far, I have to say that I am delighted that I bit the bullet and said goodbye to pride. That pride that was screaming inside me “Are you really going to let this thing beat you?”. I know without a doubt that that attitude has done a huge amount in keeping me going through out my health issues. I also know the battle that I went through mentally both before and after I announced that I was going to move my life onto wheels. It is one of those arguments that will rip you apart if you let it, it has to be approached with an open mind and you have to be prepared for it. That’s why I took so long between announcing the change and actually doing it. The preparation I spoke about wasn’t just the physical items I needed to buy so that I could live this way, a lot of it was the psychological preparations. I think that in all it has taken me two or three months of working on my mind, as giving up your legs is a major thing to do. I had to do it on my terms, not by going down the more normal route of calling in the OT’s. I don’t get why people do that. There isn’t one of us out there that doesn’t have a brain, so why do some need another brain to tell them what they already know. The only reason I can come up with is, is that it takes the responsibility and gives them permission to do it, and an OT to blame for all of it. I’m a grown up, I don’t need anyone to blame. As long as you really think about what is happening and you prepare physically and mentally, we can still do anything we put our minds to. Even open bathroom doors.

Mentally, I can’t change the fact that by the end of each day I am now exhausted. My chair hasn’t removed that if anything in an odd way it has made it worse. No matter how tired I was at the end of the day, I could always drag my knackered body around the house and into bed. Now that same drained body has to somehow find the strength to move it and that chair, no matter how lightweight, around that same house, which has now become an obstacle course. I have found myself sitting slumped in my chair in the living room, with my arms just hanging either side and having to force myself into actually moving. Trust me, it’s a daunting prospect, especially as it is the only time of day that I have to enter ever single room in the house. A wheelchair isn’t always an improvement, it can be the very thing that adds to your destruction. I have always got into my bed at the end of a day, glad to be lying down at last and knowing that sleep isn’t far away. Now I get into bed with my entire body glowing with pain and exhaustion. I lie there feeling it all slowly leaving me, just as I feel my conscious self shutting down for the day.

Please read my blog from 2 years ago today – 26/09/2013 – Gone but still there

There has always been a temptation in my life to simply do things that shock others and show with pure strength and humour just who the inside person is. Throughout my younger years and again once my divorce was through I gave into it freely when ever the…..