A matter of conscience

One of the questions that I have been asked over and over is what caused all my illnesses. Clearly as someone with an analytical brain and someone who has a deep interest in subjects like archaeology and pathology, knowing what is behind something does interest me, but being able to point the finger and apportion blame, doesn’t. I find this modern need to do so, just doesn’t sit well with me. Things happen in life that no one and nothing can be blamed for it, and that is the end of it. Those involved, regardless of what extent their lives have been damaged or destroyed, they simply have to live with it, alone and without financial support. Yet if there is a tiny speck of evidence that someone can be blamed, suddenly legal action is taken, support networks put in place and financial retribution nearly always follows. It is those situations, that complete imbalance, that I can’t get my head around and leaves me with a dilemma that I have thought about and thought about and can’t find an answer to. If tomorrow they found that PRMS was caused by an accidental mistake by a company, would I, or wouldn’t I jump on the bandwagon and claim my share of the payouts.

On the surface, anyone would say of course you take the money. Without a doubt, money would make my life easier, no worries about getting an electric wheelchair or any other aids I might need in the future. But isn’t an accident just that, something that is done by mistake, something that couldn’t have been avoided? Is it right, that my life would be transformed, but those out there with other forms of MS, or Fibro, another of my conditions, which is impossible to split apart from my PRMS in many of it symptoms, get nothing? The money wouldn’t make my PRMS go away, it wouldn’t make the pain less or suddenly transform my bladder and bowel into ones that work or even stop it from squeezing the air out of me. Money isn’t the answer. or the solution, it’s just a plaster on the surface of a volcano. It would leave me with a dilemma of conscience, one that I don’t think money would fix. It is those words, “accident” and “mistake”, they imply that it wasn’t done on purpose. Clearly, only a madman would do such a thing on purpose and accidents are a fact of all our lives and if it was impossible to foresee, how can or should someone be punished for it?

If a five-year-old where to push a 13-year-old on a swing, which is meant only for children under 10 and that swing were to break, badly injuring both children and breaking the swing, who would you blame? The five-year-old, who pushed it or the older child for sitting on a swing that was made only for smaller children? I can’t help but feel if that happened 30 years ago, no one would be blamed at all, it would be a plain and simple accident, unfortunate but just one of those things. These days, I think it would be totally different, especially if the swing didn’t have written on it clearly stating that the swing wasn’t suitable for anyone over the age of 10, that the older child could have read. At which point the lawyers would enter and take over. If that failed and the accident had happened on land not owned by the parents of either child, that would be their next port of call, as the swing was there without suitable supervision. Should the children not be related, then I could see the family of the younger one suing the family of the older child, as the older one should have known better. All of which to me is total nuts. It doesn’t matter if we are talking about children or big business, it is the same, it was an accident, or does that word no longer exist in our language, if so please remove it from the dictionary forth with.

I can see quite clearly how a company could with great ease have produced 40 years ago, something that as far as science knew, would do no harm to anyone or anything and put it on the market. They had done all of the safeguarding required by the law at the time and everything had passed and it went on sale as safe. If today that product was proved to have been the cause of my PRMS, how does that make it that companies fault? They had done everything possible at the time, and nothing showed the slightest possibility of causing any issues with anyone. If it were you, could you without it causing you a crisis of conscience, then sue that company for your illness? I know this is all hypothetical, but as time goes on, I almost guarantee that with the improvements in science cases like this will start to appear. There were after all people who tried to sue tobacco companies for the deaths of their loved ones, people who started to smoke before the effects were known. Total madness, they should have been suing Sir Walter Raleigh or better still the American Indians who gave it to Columbus. There has to be a point where liability ends and common sense begins. If not, well almost everyone should be suing Italy. As somewhere back in time, I am sure the Romans did something to one of your distant relatives, that wasn’t very nice. Or better still, Mongolia, since so many carry the DNA of Genghis Khan and he really wasn’t nice, or maybe, the financial liability lies with those who carry the DNA as direct relatives.

I often find our modern world a place I don’t understand. I used to think when I heard people saying that, that they were old fogies, past it and without hope. Now I actually understand them. I know without a doubt that I am as connected to the modern world as the next person, but still life escapes me occasionally. We’re not old fogies, we’re just people who are looking at other people with only one question, “Why?”. The longer that I have found myself in this odd position as an observer of life, the more I question. When you are out there part of the hustle and bustle, desperately just trying to make it through yet another day without sinking out of sight, you don’t have time to question. Yes, the odd thing, but I am talking about the luxury of being able to questions everything and anything that comes in sight. That is the only luxury that I have, I can question everything, and I do. There is one thing though that I am sure of and that is, that each of us has to decide for ourselves, what we are prepared to live with and what we want nothing to do with. These days, to me it appears that too many people are willing to say that they have beliefs but aren’t willing to stand up and be counted. It is a stance that I find very odd, especially as this is probably the first point in history, where people aren’t normally killed for they think. The majority of us in the western world have freedom of speech, yet are scared to use it, and even more scared, to declare their total belief of anything that isn’t totally mainstream.

In the past few years, there has been a lot of discussion in the UK about the rights and wrongs as to an opt-in or an opt-out system for organ transplants. As it stands, if you are both on the organ donation transplant list and your next of kin follows those wishes, your organs can be used after your death. It’s sound a simple system, but the problem comes when either of those doesn’t happen. You might want your organs used to save lives, but if your next of kin doesn’t know how you feel, they won’t be. Or if your not on the list, then there is no way that your organs can be touched at all. It is a subject that I have put a lot of thought into and I have to say that I am in total favour of the opt-out scheme. To me it perfect sense, those who don’t want their bodies to be cut up and shared out around the country to change others lives, have the perfect right to say so. Anyone who feels strongly enough about it, are clearly going to opt-out. Unlike an opt-in system, where people just keep putting off and forgetting about it, until it’s too late. What some don’t realise is that it’s not just organs, there is also tissue transplant, something that can be just as life transforming as organs. Eyes, bones, cartilage, tendons and even skin can be donated, but right now, if you haven’t taken the required actions, how does anyone know how you feel about it.

I made my decision many years ago now, I think I was in my early twenties, and nothing has changed it since then. I would be signing up to the opt-out scheme. That may surprise some and I am sure I can already hear the odd brain clicking over “she would think differently if she needed one”, your wrong. I did actually in my early thirties, through my own stupidity, find myself hours off requiring a liver transplant. The hospital staff spent ages arguing with me about the fact I wouldn’t let them put me on the list, luck was on my side and I am still here without anyone else’s liver inside me. To me, if you’re not willing to give, then you can’t expect to receive, it’s as simple as that. I stand by and up for what I believe. I don’t believe that governments, Doctors, families or partners have the right to tell anyone what happens to their bodies. All of us has a conscience it’s there for a reason, but it doesn’t always make life easy. Whatever we do in life, that is the one thing we have to live with regardless of anything else. It is also the one thing that we can’t run away from, hide from or escape, ever.

Please read my blog from 2 years ago today – 30/09/2015 – Could I be right

It seems as though my body is determined to not give me peace, I wasn’t as bad yesterday as I had been on the day before but I was still feeling as though there was no escape from it all. I decided, wisely or not, to take control and to pull myself in to routine regardless or not if it actually wants routine. I woke feeling much as I had done the day before but by the time I had……

Changing rules

I spent Sunday night not sleeping properly. I was in pain, but this one was different, it was at the base of my stomach and with every spasm, I felt sick. It wasn’t like any sickness I have ever felt before, as it seemed to flow through my entire body and there was an edge of something I could only call fear. It didn’t make any sense, there was no reason for me to want to throw up. I have been living with intense intestinal pain since January, yes, the position of the worst pain was slightly different, but it was triggering the now normal pain as well. Normally, pain in my intestine moves with it’s contents. Intense pain as whatever is forced forward, then peace, but this new area wasn’t like that at all, it didn’t move even a centimeter. For every spasm in my stomach, at least two more grabbed me deep inside my intestine and somehow there was an echo deep in my head. I have always believed that out bodies speaks to us, they tell us when there is something to worry about, or if it’s just something that will pass. The first real thought on waking and feeling what was happening wasn’t to get to the bathroom but to wonder if I needed to get to a hospital. It was nearly 2 am, I hadn’t eaten anything since 4:30 pm, there couldn’t have been a single thing in my stomach, and the dry wrenches that appeared as I eventually leaned over the toilet, seemed to confirm that. Back in bed, I could find nothing more than a fitful sleep, sweating as each new pain grabbed and twisted my entire gut into trails of knots and that strong feeling of fear didn’t want to leave me.

Just before 5 am I woke fully, the pain was at it’s worst and the desire to be sick was stronger and believable. I made it to the bathroom just in time and I started to throw up. I brought back quite clearly, everything I had eaten it the afternoon before. It didn’t make sense and the second it was gone, all the pain ended. I do mean all of it. It was as though a switch had been thrown and it was gone. I have never known anything like it in my life and it wasn’t until yesterday afternoon, that I started to make sense of it. When I made my pancakes last week, the first three I made were far too thick. I knew that, and I also knew that it meant that I needed to be careful with them. One of the things that Psyllium does is to expand, even after going through the entire process of being transformed into pancakes, they still expand further afterward. I had tested them ages ago when I realized the danger of the powder expanding in my throat. By making them as thin as possible and turning them into rolls with jam inside, that meant one small bite, was enough to form a mouthful, that then needed just a couple of chews, the danger was gone. On Sunday, I had broken the rule as the pancake was too thick to roll, I had taken big bites, hardly chewed and just swallowed. They cleared my throat, but I think it stopped my stomach from emptying, there was the pain and the explanation of how there was food still in my stomach, and the sudden relief. I guess it was one of those live and learn situations.

It doesn’t matter how long you live, life brings you more and more lessons and it appears that illness has to be one of the hardest, but truly effective teachers. I have lost track of the things that I have had to learn or relearn thanks to my health. It is one of the ironic things about dying, you have to learn so much more than any other time in your life, with the least possible time to use it. Every new phase brings something new, be it medications, or techniques of how to do things. The worst thing though isn’t just what we have to learn, it’s the fact that most of it, we have to learn for ourselves. I don’t believe that it matters how much contact you have with medical profession either. I remember going to so many different clinics and asking question after question and usually receiving blank looks as though I had been asking how to get to Mars, not something about my health. Dr’s, consultants, OT’s and nurses, mainly don’t know the details of our lives. They seem, despite the fact they are surrounded by perfect examples, to only know what is in their textbooks. What is so hard about learning from people, especially people living the subject you profess to be an expert on? The only true experts on illness, are those living with it. If you are going to survive any chronic condition, you have to learn for yourself and have a huge amount of common sense. I was warned not to take Psyllium capsules, but nothing was said about post cooking it, or any other way of taking it. If I hadn’t been inquisitive, I wouldn’t have known the rest. In fact, I would say that it is the first rule of survival, test anything that you are not sure off. Yes, that does include your medications, especially those you have been on for a long time. If I were still taking every drug that has been prescribed for me over the years, I would be swallowing ten times what I do right now, even now it seems like a lot.

I know that I have been wondering for a long time as to why it is that the medical profession don’t seem to learn from their patients. Especially when that patient isn’t the only one to have said the same thing to them. If I were the only one wondering, them I would put it down to the fact that I was the one asking odd questions that others didn’t, or telling them things that no one else has. But I’m not. The more people I am in contact with, the more people that I am finding who are saying the same things over and over. The NHS is desperate to make cuts, to bring down the bills and to make it fit for purpose. I can’t help wondering if they are not asking the wrong people how to do it. The problem with the managers and directors of any company, is they don’t believe there are a better ways of doing things. No matter how open minded, or how much they know, they are blinkered. If the NHS are to change, are to supply the services that patients really need and save money, then why not ask us. 50 MS patients would produce a totally different view of our care than any group of consultants would. I think they would be surprised to find that most would be open to a more streamlined system, especially one that is patient driven, rather than one with a tick box agender. The reduction in unnecessary hospital visits would save a fortune and not just for the NHS. Personally, I think it is time that we all took more responsibility for our care and our own health, something I believe that we are all capable of.

I have been housebound now for nearly a full 8 years. In all those years, despite my balance not being good and more falls and wobbles than I can even remember. I haven’t broken a single thing in this house. If you were to see my home, I know without a doubt that that statement would shock you, as my home is full of fine crystal. There isn’t a single surface in any room, or any space that I have spotted that isn’t covered. I have actually been really proud of myself over that fact. I have on many occasions actually caused myself worse injury than needed, just because I didn’t want to damage something else. That, though, is a sacrifice that I have been more than happy to do. This morning, I lost my legs from under me, just moving from here at my PC to my wheelchair. I stupidly, instead of twisting to fall onto the settee beside me, I let myself go the similar root, onto my chair right in front of me. I knew the brakes were on so it should have been fine, but it wasn’t. The chair twisted and the handle on the back of it hit one of my popery bowls and sent it flying onto the granite surround of the fireplace. There was no saving it, smashed into tiny pieced all over the surround and the carpet. I know it wasn’t the best or most expensive one, but it is the fact that I made the decision for safety, of both me and my home, that I should be in my wheelchair and it smashed it. Just when I was actually patting myself on the back at how good I was becoming at maneuvering around the house, my chair when I wasn’t even in it, managed to produce the first and what I hope is only casualty. New rule in the book of life, don’t fall onto wheelchairs, pick something more solid.

Please read my blog from 2 years ago today – 29/09/2013 – Who stole Saturday 

Yesterday went from worse, to worse to, still worst. I completed my post and started sorting things out on my other accounts, but I was having great trouble actually managing more than a tiny amount without stopping and just sitting there, looking into space and feeling like hell. All the feelings and sensations I wrote about….

The hardest thing to lose

I often wonder what it is that brings people back to my blog over and over. To me, I am just another person, one among millions around this world who are living with a range of illnesses and housebound. I am sure that each and every one of them could if they chose, write exactly the words I do, yet here you are reading mine. No matter how I try, I, personally don’t get it, but I wouldn’t would I. I don’t think any of us truly understand how others see us, but for me it goes even deeper. I don’t understand what anyone sees in almost everything, especially the so-called popular. Just as I love to burry my mind in yet another documentary about the “Somme”, even a repeat, rather than a soap opera, I never understand what draws more than one person to anything. When almost everyone out there says that the “Beetles” were an amazing band, I don’t hear it, above average, to me is even stretching it, worth listening to, never, and it’s a pattern that has shaped my whole life. It’s not just music, it’s everything. 95% if not more of what is popular, I just can’t get my head around. It can be anything, fashion, food, music or anything that you can think of, my taste just doesn’t agree with the rest of the world. My parents used to think I did it just to be difficult, but I never have and I never would. How many kids do you know who hate both jelly and ice cream? I wanted to be sick at the very thought of them and still do. I have grown to believe that I was born different, that is the only explanation that I have ever been able to come up with, but that’s not an answer.

Once I had my freedom, when I was finally allowed to be myself, I took it to the fullest expressions of it that I could. It’s hard to explain just how wonderful it feels to suddenly find yourself aged 27 and not having a single person telling you what to wear, how to look, what you can eat, or do, or even think. When I left my first husband and I had my freedom, with nothing to prove, I thought that my entire life would be just like that, free. That there was never going to be the slightest chance that anything would limit me ever again. I didn’t care if people stared at me, thought I was mad or even called me names. I was me and I was going to be exactly that. To me they were the odd ones, they were the ones who were willing to be dictated to by society as to how they were going to live and look. I felt sorry for them, not being able to see the possibilities, the invigorating freedom in totally creating yours and you alone, was the only person who had to like it. I couldn’t believe how so few could even see past it, or were even willing to try and look past it. What did they think they would find? I wasn’t that different from them, inside we are all identical, it’s only our thoughts and our self-education that creates any differences at all. How different can two people really be when they have been brought up in the same society, the same country, having passed through the same education system and been open to the same influences, like them or not.

In the early 1990’s, I proudly showed my tattoos, which kept growing and spreading, but that alone without my jet black and scarlet streaked hair, was enough to have people move out of my way. What was I going to do, infect them, or stab them, I was a woman in my late 20’s politely spoken and educated, but all they saw was my outer image. It’s an image most wouldn’t be given a second look now, but then it was totally different. For me it wasn’t about shock, it was about creativity, design, personality and that big word freedom. I appeared to live the wild life, but the truth was the opposite, I had a job, a good job, a nice flat and I was proud of it all. When I chose to retire as a DJ and to join he business world when I reached into my 30’s, a simple white shirt and a suit covered the ink work and I toned my then black and violet hair down to it’s natural dirty blond. No one ran away, no one gave me odd looks or once shouted abuse, and all because of a suit. This world is so wrong, so bigoted and so cruel, yet outside of the office, I was still me, in it I was a sales women and I was going somewhere. I just didn’t realise that all to soon that somewhere would be on wheels.

I had this image of myself in my head, well into my 60’s still turning heads with looks of anything from shock, to laughter, to disgust, sometimes disbelief and just occasionally admiration. I had every intention of living eccentrically right through whatever time my health was willing to give me. What I hadn’t realised was that there is one thing you can’t avoid when your health disintegrates and that is convention. When your nervous system is so screwed up, that that long planned and half completed full tattoo back piece, just can’t be finished. To go from lying there letting them work both lines and colouring for hour after hour to not being able to deal with just five minutes, destroys every plan you make. I spent hours drawing and designing what was to go from the base of my neck to the back of my knees. None of it was completed, most of it down to my waist is there, but there was still more work to be done. Like so much it is incomplete.

I was under no illusion that I would still be wearing short shorts and thigh boots in my 60’s, no I had already been recreating myself for that far in the future. I had this plan of a stylised Victorian, complete with corsetry, but not heavy thick materials, more chiffons and laces, layered and soft. For winter, I saw high collars, mutton sleeves and thousands of velvet covered buttons all of it with a twist that would have made it look like nothing a Victorian would even recognise. I never allowed for the fact that the last outfit I would ever make was my wedding dress, and even then as I worked on it, I often struggled with the beading and embroidery, at the time I just didn’t know why. My work was fine and done with love, hundreds of hours for just one day. That though was nothing new, I had done so for many outfits, most not worn again, but unpicked and turned into something else.

So there I was in my early 40’s sat in my wheelchair, dressed in black knitted mini dresses and thigh boots summer or winter, my hair an acceptable shade of purple and enough jewelry to sink a ship, and that was just in one ear. I was me, I was the person I was born to be illness or not and I knew how to express it without fear. The business world had accepted they couldn’t reduce me and I showed them a little respect in return. I didn’t see that those where my final years, that all I had created was about to be destroyed as somehow my health stole me. I didn’t even see it happening, it just did and I lost everything in a flash.

It’s hard to explain how my health took all that I cherished, how it reduced that carefully crafted person and equally crafted future, to a mere shadow, if not less. At first, it didn’t, at first when I was trapped at home I still maintained me. I wore wonderful black nightdresses, a mix of vintage and new, but all with that twist from normality that meant none would place them as average. They became too hard to wear, to uncomfortable and even difficult to put on. Laces and buttons defeated me and comfort became vital, design slow grew less and less. The weight started to appear where I least wanted it, that once size 8 to 10 figure ballooned and all I wanted was to hide it. I stopped caring about anything else, it just had to be hidden. I can’t use nice words like draped or layer, as the truth is it is just baggy too big, soft and comfortable. Style doesn’t exist anywhere on me at all. My hair may be shocking ultra violet purple, but there are no braids, no beads, no lace or ribbons, it’s just long and there. The silhouette that I once prized is nothing but a series of lumps, each blending into the next. I am too tired, in too much pain and can no longer be bothered to even try to fix it, I don’t have the strength to spare on something so ephemeral as appearance.

I no longer care about food being tasty or special. Those once longed for flavours of the exotic and rare has turned into what’s needed to keep living. Likes and dislikes, well they can’t be changed or be fought, as always I still would rather not eat anything than eat what I don’t like. That though is going to be a growing problem, as the less I care about eating, the more others will try to make me eat. I know right now, if you showed me, for example, a standard hospital menu, I wouldn’t find a single thing that I would consider edible. Many restaurant menus, even from a good restaurant has the same issues. My taste in food is as unusual as my once appearance. Take a simple steak, I like mine blue, with mushrooms and french mustard, but I still rather have a lightly sauteed calf’s liver and onions, than any steak at all. I don’t understand how people eat things like sausages and mince, or fish fingers, baked beans, pies and most other foods that fill British supermarkets, what happened to food, good food. Now a plate of sashimi or sushi that I would enjoy. I can’t get out there to go to places where I could buy what I call “real food”, even if I could, well I can’t prepare it. With every progression of my health, my enjoyment or interests of food diminishes and I can see the battles ahead growing.

When you’re different, when you’re out of step with the world, as long as you are fit and healthy, as long as you can do it all, life is a joy. If I were to say what I miss and what the hardest thing about being chronically ill and housebound, it’s losing me and being totally unable to do a single thing about it. Being me was creative, being me was individual and strong, all things I am no longer, yet you all still keep coming back to read what I have to say.

Please read my blog from 2 years ago today – 28/09/2013 – A missing clue in time 

Things are wrong just now, I can’t really put this into words easily, I have been trying, trying to formalise it clearly so that I can at least explain it to Adam, but the more I try the more it remains a muddle of what I don’t know. Things are just wrong, very wrong. I can sit here on the side….

A mind of two halves

Whatever is happening out there in the world, right here, winter has arrived and the lead into Christmas along with it. Sorry, if that disappoints you, but I am sure there are quite a few out there, that are right there with me and fully understanding my reasons. The best Saturday night TV viewing of the year has begun, “Strictly come dancing” followed by “Dr who”. It’s odd how two programs, that are the total opposite of my normal style of viewing, have so totally taken over my view at this time of year and the excitement that I find in the fact that they are both back. I am anything but a bubble gum TV viewer, give me a good documentary or failing that just the BBC news and I am happy, but I just can’t resist these two programs. I guess we all have those guilty secrets, those things that our mind tell us are ridiculous, but our hearts jump with glee at the mere prospect of. So that’s me happy until Christmas, even though the good “Dr” doesn’t run until then, I know the “Beeb” won’t let me down. They always find something as deeply bubble gum and good to take us through to the end of the year.

It’s odd how you change over time to fit your abilities and demands. 30 years ago, I didn’t really care what was on TV, I had too much to do to pay that much attention. Every evening once all my tasks had eventually been completed at around 8 pm, I eventually sat down. Well, I did have two kids and a typical home for the time. No gadgets, beyond a washing machine and a hoover, and I was a fussy housewife, so enough to keep me busy from 6 am to 8 pm. When I broke for the day, it was to knit and sew clothing for the family, or decoration for our home. TV was a background as the radio was during the day. 25 years ago, I was a DJ, didn’t care about my home as I was never there and as for TV, I never saw it. 15 years ago, once again a proud housewife and busy business woman, constantly working or cleaning, with no time to just sit down and watch anything. Now, I don’t clean my home Adam does, I don’t work, I don’t go out and I don’t have the dexterity to make anything. TV, the once somewhere in the background item, has become my companion. Regardless of anything else it is always on, and I always have something to watch or at least listen to from a continual supply of programs I have recorded or downloaded. Right now I am listening to a documentary about world war 2, as I write. Yes, I can do both, not as well as I once did, but I can. The silence without it would drive me mad.

Once silence was a joy, now it just reminds me that I am sat here alone. Silence sounds somehow like a prison. A reminder that I can’t make the noise that once filled my life. That I am locked inside its walls, with no escape. During the day, the TV teaches me, learning something all the time is one of the few things I can still do although I have no outlet or requirement for that knowledge, it somehow makes me feel more complete, more part of the world. No matter how well you might adjust to being housebound, the one thing you still need is to feel attached to the world. For me, that is what learning does. It can be history, or any other subject if it deepens my understanding of life, then it is keeping me connected to it. My last job was probably the job I actually loved the most. What I loved about it was that I never stopped learning, from the day I took on the role, I never stopped. I taught myself everything I could need and more about computers, from programming then onwards. I had to learn about business, laws, regulations and best practices, all needed updating constantly, I spent more time researching than anything else and I loved it. When it ended, I felt lost.

I didn’t even realise what I was doing when I decided that I was going to learn all I could about the two world wars, a subject that chose me rather than the other way around. It had just been there one day after a show I chose and I didn’t change the channel, oddly, it was interesting and that as they say ” the rest is now history”. I had unintentionally replacing that discovered need through work to learn, by learning about life. I can’t tell anyone how to replace what they miss from their working life, but I bet that learning something new, would help anyone and TV is a wonderful passive way to learn and doesn’t cost you a thing. Keeping our minds entertained and busy is essential. Sit on your settee day in day out doing nothing and watching endless bubble gum and movies and you are going to deteriorate before you even see it happening. Just like good posture and good relaxation helps out bodies, I truly believe that learning helps our minds to stay connected.

I woke last night once again needing to head for the loo. My mind may have worked out how to sleep every night for ridiculously long periods of time, but my body hasn’t. I pleased and surprised that I managed to get to the bathroom, stopping off for a cigarette and back to bed, without once seeing Adam. As always, wheels or not, I did the entire journey in total darkness and without banging into anything too heavily. More importantly, I didn’t wake Adam. I was lying in bed, starting to head back into sleep and feeling rather chuffed with myself, when I suddenly noticed that the entire right side of my face was freezing. I didn’t have to think about it, I knew it was the nerves playing up. There was no other reason why only one side of my face should be trying to tell me, that the outside temperature was several degrees below zero. There has been no improvement in my face sensations and movements at all. It is still my right side that is the worst and it does seem to still be spreading. More and more of it keeps sort of setting if you like. The movement required to speak or even smile at times, from my side, feels set still and unchanged. Adam has stopped asking if I have a cold, but I am becoming more and more aware of it, even without his reminders. What I don’t like personally, is that I can now feel it far more clearly, right up to my eye level and crossing the bridge of my nose. There are no time limits as to how long things keep getting worse, or when they will stop or even get better. All anyone can do is wait and see.

I really do seem just now to be falling apart again. The speech changes that the doctor noticed when I was at the hospital wasn’t due to the right side of my face, but the fact that I can’t end my sentences and get lost in my words. They too are happening more and more. In the last couple of months, I have been really aware of them, usually when things are tense or uptight. In the last couple of days, they are happening even when I am totally relaxed. A year ago, I would have held onto my last word and not let go until I found it’s missing friends. Now, I just stop. It is as though without permission, my brain has decided that there isn’t a point in fighting it any longer and that I have accepted that my brain just isn’t up to it, I haven’t. I am now totally unable to finish what I was saying, the blank is so deep that I don’t even have that feeling any longer that the word is on the tip of my tongue, as it isn’t. It has totally vanished for all time and there is no way of finding it. That was something that used to happen occasionally, now it is the norm. Worse still, it used to happen a couple of times a day under normal living stresses, now it happens every few sentences, even without stress. I knew exactly what my consultant was pointing out, what I didn’t know was that it is now as active as my muscle problems. Yesterday, was a mess, from my sentence to my last. Adam quite sweetly tried to say that it wasn’t that bad and was only showing signs of getting worse in the last couple of days, when I checked him, he shut up. Proof, he was just being nice.

Everything seems to be active just now, I don’t know why, but that is just the way it is. I guess, I am in another relapse, it’s just a matter of waiting until it comes to an end. That’s always the problem, they can last hours, days or weeks and when you live also with progression, it’s always hard to know which is which.

Please read my blog from 2 years ago today – 27/08/2013 – Connections of life

I don’t know why I didn’t think about it before but I now can see a clear reason why I choose to blog rather than just join into one of those groups, well actually I can think of million reasons not to join a group, but that’s another post. I started years ago with one of those slopes that once stood on never….

Two weeks on: Without permission

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…..