There are blessings

I’m sitting listening to yet another TV show, about staying healthy, and wondering not just why, but if this short of show, has actually changed anyone’s life for the better. There must be thousands and thousands of hours of this sort of programming shown worldwide every year, but does anyone really change their diets, or lifestyles, because someone on TV, has told them this or that is the way you’ll live longer. I have to say that I have never once actually paid attention to any of it, but I still watch, which in itself is odd. I can’t help wondering what is going on here? Look at the ratings and the shows are clearly popular, in fact, there are some channels dedicated to them, but look around and the evidence that’s out there, shows they aren’t working. If they were, we would all be pin thin joggers, who eat nothing that could do us any harm. Mind you, that might be rather hard to find, if, you listen closely to all their warnings. It’s just a thought.

A couple of months ago, I wrote about the problems that I was having with my hands I was having following moving back into my wheelchair. At first, it was aggravating my HMS and my thumb joints kept popping out, not just when I was using the chair, but when I was doing nothing. The good news is, that they aren’t doing this nearly so much. I think, that the persistent use of the muscles in my hand, has strengthened them, and the joints are being held in place better. The bad news is, I am getting more and more spasms, and my entire arms, aren’t getting stronger, just weaker. I can’t make a simple trip in my chair to the kitchen and back, without being left with pain my upper arm muscles for the next half hour. I don’t remember getting spasms in my hands, other than the odd one, very occasionally, but that has totally changed. I never get through more than a handful of hours now without them doing something odd. It can be anything from, spasms so painful, that they stop me dead and I have to massage them, in a hope of breaking the spasm, to twitching and tremors that are just plain annoying. Clearly, I do a lot of typing and have done now for years, but in the last two months or so, I have found my left hand doing the oddest of things. I’ve joked for several years now, that my Dyslexia had spread to my fingers, as I frequently hit wrong keys. Yes, I am Dyslexic, I was diagnosed before it had that name, in those days they called it word blindness, my father, just called me stupid. Now it’s not just as simple as hitting the wrong key, because, my fingers aren’t where my brain think they are, now they’re just stopping in mid-air, shaking over the keys, but unable to hit them. My right hand isn’t affected nearly so badly. There are far fewer spasms in it as well as odd movements, but that isn’t really surprising, as my left hand has been weaker for years, ever since it died and took a year to return.

It has changed so much in the last month that I am now beginning to worry about it. I’m not transfixed by it, but there are so many small things happening, that just weren’t there before I returned to using them to propel me. I can remember quite clearly what life was like when my hand died and the problems that it caused. I don’t think that my hand is about to die again, it doesn’t feel that way, but the rapid increase in odd behaviour is suggesting that it is just going to keep progressing in a direction that I really don’t like. When you can’t trust your hand to do what you expect, it makes life difficult, and not just when you a typing. Everything from eating to holding onto things becomes a lottery, you simply don’t know for sure, that your hand will complete a task or throw a spasm midway. Being right handed, is a plus right now, but there is this niggle that says “For how long”.

I can remember years ago a conversation about if you had to lose part of you, what would be the worst thing to lose? Well, as I have proved, losing your legs is a huge inconvenience, but it is one you can get around. Sight always sounded like the most horrific, but I again have proved to myself, that I can get around the house, find what I need and functions without seeing. With an app, that reads back what I type, well, I could still manage as I am already a touch typist. But losing my hands, well that would stop everything. As I already know, losing one hand isn’t the end, but it is incredibly hard, even though it was my left and not my right.

I guess, that when you have a collection of conditions like I have, especially ones that are attacking the nervous system, it is something we are bound to at least think about from time to time. Our conditions are so unpredictable and often, do things without any warning at all. Those events are distressing, but waking up finding some part of you no longer works, isn’t half as bad as watching something slowly change. Almost daily, being aware that this or that is just that bit worse than it was, or it’s doing something totally new that you had never, even thought possible. It’s like watching yourself falling apart, diminishing bit by bit and become something that you don’t like. Progressive illnesses, whether they move quickly or slowly, are quite simply cruel. I used to think of it as aging on speed, but I realised a long time ago that it’s worse than that. At least, when your aging, you’re doing what everyone does, it is just part of the progress of life and all those around you, are doing it too. Yes, I could look at my health that way, but that would be a lie, because I know, that I am on a progression that no one has done identically before me. On the plus side, it is a life of discovery, but it’s sometimes hard, to find the adventure in what you’re losing, as most adventures are about gaining. Yes, I gain knowledge daily about what my body can and can’t do, but that knowledge, is never, a good enough compensation for the losses as they appear before my eyes. Progressive illness is cruel and in my case, relatively slow, that is my blessing. Everything that has happened to me, could have happened in one catastrophic night, but I have been given years. At times it speeds up, at others it slows down, never stationary, even when I, at first, think it is. Percieved stationary, generally turns out to be something sneaky going on inside. Out of sight, can never be out of mind as that is just plain dangerous. I can’t stop any of this, no one can, but I hold onto my blessing as it has given me time, time to live, time to spend with those I love and that, it is the biggest blessing of all.


Please read my blog from 2 years ago today – 25/01/2014 –  What if

I am an avid news watcher so I was surprised that with so much coverage of the flooding down south, that although we have seen the odd elderly person being assisted out of there homes, there had been no mention other…..















The right thing

We are up early this morning and all because of a misunderstanding in a conversation we had yesterday. Adam had noted that he managed to deal better with his day when he was up that half hour earlier, as we forgot to reset the alarm after the hospital visit. I thoroughly understood, as I used to be the same, if I was up with plenty of time to potter around getting dressed, doing my makeup and even some housework, well my day went well. Yesterday’s mistake appeared when I said “Well set your alarm for 7 am then”, he thought that I meant the main alarm in the bedroom. It was just his mobile I was thinking about, so the alarm sounded and up I got, not too happily at first. I think he missed the fact that if I were to be up every morning at 7am, I would have to go to bed at 8:30pm every night, something I am not going to do. I don’t hear his mobile thanks to my earplugs, so he can get up when that sounds and I can sleep on until 7:30. After all, I used to be up every morning at 4:00 am on work days and did so without waking him for years. So I don’t see why it can’t work the other way round. It has been one of the things I have been wondering about for a long time, what happens when my ten and a half hours sleep at night stops being enough. It’s bad enough chopping my evening in half as I do at the moment, but the whole idea of going to bed even earlier, well that just feels so wrong. For some reason, Adam has always required a rather massive kick up the backside to make sure he is up in the morning. I used phone him from the office, acting as his third alarm to ensure he was up for his work. Getting up at 7:30 doesn’t just suit me, it means we both know he is up and on the move. But I know the day will come that I will need more sleep, just as it has crept up from just five hours a night to where it is now, it will increase again. What happens then, as Adam really needs to keep working, and we can’t afford for him to lose the job he has. It’s odd how the things that are important to us when our health takes over. I, of course, didn’t want Adam to lose his job even when I was working, but it wasn’t half as important as now and not just for the money. His being out at work means so much more now as he needs to be around other people, and we do need that break from each other as well. We both know the time will come when my health demands that his role as a carer will step up, for now that chance for him to be part of the outside world is majorly important.

I suspect if we all sat and thought about it, there isn’t a single thing in our lives even our values, which haven’t been changed by our health, from the tiny to the major. It sometimes feels as though it has taken over everything, and I do mean everything. Just looking at the paragraph above, there is a list of things there that have an entirely different importance applied to them now than they did eight years ago. I suspect that would probably be the same for almost every paragraph that I have ever written in this blog, change after change after change. Things that used to be important, now not valued at all and things that I didn’t even notice before are now so important that if they go wrong it feels like the end of the world. I just thought of one small but equally major thing that is a perfect example. I drink nothing but caffeine free diet coke. Should for some odd reason this isn’t delivered, or we run out, you wouldn’t believe how wound up and how personally I take it. I know that my emotional center is out of kilter, and part of that feeling is down to that, but that is just a part. I honestly now place a higher value on a bottle of coke than I do on the rest of the food, not having it is like someone cutting my throat. The whole idea of having to drink anything else, well it is almost unbearable, a few years ago, I wouldn’t have batted an eyelash. As I said, I know part of that is down to the damage to the lesions on my brain, but I think there is something far stronger behind the value I apply to different things these days.

I first spotted it when I was first unable to manage to eat large quantities of foods a few years ago. At that point as I was still working in the companies offices, grazing as I do now, wasn’t an option. So I had small high protein and calorie shakes that I could sip, but I only liked a few flavours and utterly hated the orange ones. Occasionally, the orange ones would be delivered, and I felt myself for the first time being upset by something that didn’t actually matter that much. It was something that I just couldn’t get my head around as I had never had that kind of petty reaction before, so I set about analysing it. I don’t remember how long it took, but I did find the reason; I believe it was because I for the first time had realised just how much of my life had already gone. I had only had my wheelchair for a short while and at first I saw it as an enormous boon to my life, that was until I discovered the reality of the outside world. A world designed by the able-bodied on a day when they switched off their brains, totally inaccessible. The ultimate truth of my illness was beginning to hit home; everything was slowly slipping away from me, and I had less and less. Everyone else still had full and active lives, they went out for dinner, clubbing, the movies and were free to go anywhere, but what did I have, orange protein shakes. The more my health was boxing me in, the more importance I was putting on the small things that I could do, or could have. Soon I was going to have even less and less so the little I had, had to be right. On the surface, I was more than aware that it made me sound and look like a petulant child, but was it really asking too much that what I had to eat was at least palatable. My values were becoming self-centered, and I didn’t like it at all. I by nature had never been self-centered, I was the person who thought of everyone else first, yet here I was becoming locked into looking inwards only.

It took a long time for me to understand what was behind it all, but the core reason what simple, I was feeling cheated. Something had stolen my life, and what I had left, well I deserved to have what I liked and what I wanted. At first it wasn’t a conscious decision but these days there is a large dose of choice thrown in there too. My brain had made a decision for me, and it was right, it just came out wrong. Having a hissy fit doesn’t help anyone, sometimes when you don’t have full control over your emotions those hissy fits appear when the truth is much simpler. My life is so much more intense now like and dislike aren’t strong enough words for anything. When every second counts, a second doing something I don’t like is like, spend hours doing something I once hated. If I am going to do something, well it has to be something I enjoy, having to do it out of requirement means nothing to me. Take having a shower, I know everyone has to wash. But the water causes me pain, and the whole process is exhausting, is it any surprise that my brain ditches even the notion of doing such a thing? Food, drink, showers, sleeping, activities and sleep, all have a value they never had before.

I like everyone else who is chronically ill, just didn’t realise the actual impact. I know I have said before that I had these steps I thought I would go through. From able-bodied to walking stick, from walking stick to a wheelchair user, from wheelchair to housebound and housebound to bedbound. That is how I think most would see their course of progression, but we totally miss out the smaller things, which are in truth, just as big, like food or clothing. I have just sat here for a few moments, desperately trying to find something in my life that my PRMS hasn’t changed. I can’t think of a single one, none of us expects that when diagnosed and I would happily bet money on that one. I know I never foresaw a future where I would have difficulty just eating what I would expect a five-year-old to, or that sex would be just a distant memory. But that is just the way it is, I can’t change that, I could either drive myself insane worrying about it or trying to change it back or I can accept it. I know all lives change as time passes, but there is an enormous difference between going with the flow of society and finding yourself with no choice but to do as your body tells you. It’s easy to see why some compare it to being in jail, but there is one huge difference, most criminals get probation, we’re stuck here forever. Sorry, I couldn’t resist saying that it honestly isn’t how I see it at all.

Values and life might change, but one thing doesn’t, right and wrong. I can’t help my surface reaction, any more than I can control my inner feelings. But I still know what is right, and that’s the greatest value anything can have and not just what is right for me.

Read my blog from 2 years ago today – 24/05/13 – Word after word

I have to start this morning with a bit of great news, Jon, Teressa’s husband had been given his residency visa, so he can now stay here forever! I am so glad that all those legal processes are known over, and they can get on with their lives as any couple should be allowed to do. With his visa now confirmed he can now……..

Progression in action

I had a bad night last night, mainly down to my breathing, but I was also up twice for reasons that I couldn’t pin down. It started during the day, once again I was in pain right around my diaphragm just as I am right now, but around midday it was joined by an area of my intercostal muscles that I rarely have problems with, from arm pit to arm pit is probably the best way of pinpointing it. As you know intercostal pain isn’t something new, it has been around for a couple of years now, but it does mainly occur from my breast level down and yes I still have the collection of bruises to prove it’s intensity. I had in the last few weeks had the odd occasion when my breathing was tight, I also had an area behind my breast bone along the same line where I could actually feel the air entering my lungs on every breath. It wasn’t painful, or even did it come with that well-known pressure that the spasm in my upper body seems to cause, it was just this strange feeling of being able to really feel the air entering and leaving me, just as I would fell the process of swallowing any liquid. I put it down to an overactive imagination, when you have spent as many years as I have trying to listen to my bodies every action, you actually do start to feel things, or at least think you do. When you concentrate too much on something, that very concentration means you can trick yourself into believing that you feel things that just aren’t there. I reckon that what I am probably really feeling is the muscles reacting to the message of breath in or out, rather than the actual air. Anyway, at times I know there is no imagination, as I have clearly felt it getting slightly tight and almost rasping as I force myself to breath using my diaphragm as little as possible. Last night though was different, for the first time ever there was a clear pressure, an area that was in spasm and I was struggling against it just as I do with all mild spasms. Ever since I was put onto Morphine, I have found that for me to feel pain from a spasm it has to really work hard. Most spasms fall below that level and what I feel is the pressure that occurs in the muscle and that was what had arrived the other day in my throat and last night in my bronchi. Five inches below my neck I had a ball of pressure, not acid reflux or anything like it, it was clearly the pressure I know as a spasm. I feel as though I am caught in some kind of sick game of dot to dot, my body is slowly bringing all the different areas that were clear on the journey of my vagus nerve into one complete picture.

This morning I am sat here feeling all the area of pressure in my abdomen and chest that two or three years ago I had to lie down to be aware of them and right now I am not just aware of them. In some ways, it sounds like a really slow process, but on the other hand it has felt really fast to me. I can think of no other thing, other than pregnancy that has changed me physically so quickly. It kind of feels as though it has all happened in the last few months, when in fact I know it has taken years, it is just in the last few months that it has gone mad and started to stomp all over me, with no regard as to how essential that function might actually be to life. I think it was about 10 years ago that I first became aware of the vagus nerve, I kept passing out, at worst I passed out and in the process knocking myself unconscious. Most of the time though it was just this sudden realisation that I was going to pass out, after I knocked myself unconscious I took to lying down where ever I was, as I had collapsed due to trying to make it the living room. I discovered slowly that there were triggers, if I lifted my arms above head height, say to shut the curtains, I would feel terrible. Actually that was the very first job I handed over to Adam, it was that much of a danger to me. I was sent to see a heart consultant and after running tests, I was diagnosed with Vassal Vega, once again though the consultant said it was atypical and he believed that my PRMS was playing with the Vagus nerve, something I knew nothing about. It wasn’t until two years ago I discovered just what the Vagus nerve did and how much of our bodies it controls. I had lost control over my bladder years ago and to this day that hasn’t really changed, my cupboard has plenty of catheters that I don’t use. When the issue grew with my bowels, then my lungs and the more consultants I saw, the more this Vagus nerve seemed to be involved in. I now know it controls nearly every organ in our bodies, it is essential to life itself in far more ways than I even like to think of.

In just four months my body has taken all those vague odd things that happened and vanished and turned them into the focus of my life, in that regard, it has been really fast, but from one clear problem, to where I am now, 10 years, well that’s slow. Progression is an odd thing, I don’t have the slightest doubt that all the things that are driving me nuts have actually also been behind many other phases over the years, I just wasn’t feeling their action, just their results. Progression now means that I feel the action as well and what I feel is opening up the truth of what has slowly been happening all along. This morning I am tired, not the fatigued, just incredibly tired. I didn’t want to wake up or get up and when I did, I was yawning so much that tears kept rolling down my face, why do they do that? I have a collection of spasm, not the painful type, but they are there either for a few seconds, a few minutes or like my diaphragm and the arm pit to arm pit intercostal spasm, permanently since I woke. 3 years ago they would have been vague shadows, discomfort that I wouldn’t have been able to explain or pinpoint as belonging to anything and nearly always the appeared when I lay down. 2 years ago, they had formed into those lines or areas of pressure, but with no other knock on effects, just annoying and uncomfortable and appearing whenever they wanted but worst in bed. 1 year ago, the pressure learned how to change itself into pain and bruising, my position still played its role and horizontal was still the worst. Today not much different in their split between pressure and pain, but now there are more of them, spreading from my pelvis up to my throat, progression in action, what will I be able to add to this one year from now.

Read my blog from 2 years ago today – 14/05/13 – Responsibility for NHS costs

Well, I may have found a clue and possible reason to these totally annoying headaches but I am still lost with so many other things. That is for me the most annoying thing about an illness like MS, if you don’t know where the attack zones are, it is almost impossible to work out what is causing what, or if there is no connection at all. I remember clearly the day………

Living in a threat

Sometimes I just wish that I could feel like the old me, even if it were just for a couple of hours. Everyone sees me as being such a strong person, someone who is alway positive about life and doesn’t get pulled down by anything. Mainly they are the people who don’t really know me that well. I guess when you learned as a child to live behind a screen, to hold bravado as the strongest trait anyone can have, well you carry it on right the way through your life. Those who have read from the start, right the way through today, well they might know a little better that behind the person who writes as though the world is a wonderful place, is someone who is just as scared about every single step they take and where their life is going, just like every other single person on this planet. I used to think that there would be a point in life when all that fear would drop away and I would really have all the answers to all those things that as children we think adults understand and know, but are hiding from us for some warped reason, only to find the truth is they knew just as little as we did. Don’t get me wrong, I do have and always have had days when life was just good and the problems around it didn’t matter, not for a single second, and I still do have them, but then I remember and it all looks so different. I am as vulnerable to life’s ups and downs as everyone is and just like everyone else, if someone was to walk into this room right now, I would smile and disappear behind my screen again, simply because you can’t spend your life in a constant state of fear and those around us don’t need ours added to theirs. So today is a day when I can see all the bad things, all the things that I normally brush aside and smile at, not sweetly but in with a threat attached, it’s a day where I feel cold and in need of crawling back into bed, not to sleep, but just for that simple childhood comfort that bed brings with it.

So where did that all come from, well the first line, I just want to feel like the old me, the one who wasn’t ill all the time, the one who wasn’t in pain and didn’t spend their life trying to find something, anything that mades them feel better. I actually envy those who have relapse-remitting MS, because I do still remember the joy of being in remission when OK my body was still showing the signs that something was wrong, but at least I could still manage a normal life. To be honest, I don’t think there is anything crueler than a progressive condition as it takes your entire life and turns it into a threat. It’s a constant glimpse of your future with the knowledge that it is still just practicing for the main event and that once it has mastered everything, it will be so much worse. You can’t help looking backwards and trying to work out the exact path that each symptom has taken, trying to work out that angle you might see on a graph and then to extrapolate them off into some mad planet you can’t even imagine. There is a fact that I have noticed and that is there is never a point that you can say this can’t get worse. I have hit far too many points when I believed that I had reached the worst it could possibly ever go, just to find out it wasn’t the worst at all, there is still more it can do. Everyone has these scales in their head, scales for different sensations, for example, pain, we have a 1 to 10 and we know where on that scale the pain we are feeling is. Simple, no. The problem starts with a small fact, none of us are working on the exact same scale in the first place, they are all individual and dependent on our own life experiences. Life experiences change as time goes on, when your symptom reaches that number 10 on your scale, where do you go? All you can do is rebuild that scale, what was 10 has to move downwards as there always has to be space as we now know it can get worse, so does 10 become 9, 8 or even 7? Progression means it is going to get worse, so how bad can it get and which bit is the worst, what does our future really hold once you have gone past the worst you thought it could get and you know there is more to come?

Beside those scales that measure our symptoms, are the scales of time, how long is quick or even slow? No one can tell me how long any of the symptoms I have will take to get to their final position, will it be another year or 5 years before I can’t breath without help, will my bowels stand up to another 10 years of not working without dynamite attached, or will they give in totally and require intervention? PRMS is blind progression, blind because not even the experts can give me the slightest idea of what will happen when or even next and to live like this is really some kind of cruel joke, without any hope of laughter at the end. Is it any surprise that I hide behind screens, not just for others but for myself as not even I want to think about all of this all the time, but then there are days like this when it brakes through and my mind is filled with a million questions without one single answer. I used to get angry with the doctors for not diagnosing what was wrong with me when I first went to them in my 20’s begging them for some help, in an odd way, well I am now glad that they got it wrong as I at least had part of my life being totally blind to the truth. Years of being treated for all the wrong things actually were years when yes I was ill, but I convinced myself that I could survive as clearly I wasn’t any more ill than the next person, as if the doctors could find nothing, then maybe they were right and I was just a wimp and yes I know I have written about that before. Oddly, I heard someone else on TV the other day saying just the same thing and just like it was for me, she too was relieved to find out that she was really ill and that there were other out there who shared just what she was going through.

Without our screen, those places we can not so much hide but shield ourselves with, progressive illness wouldn’t just drive us into a deep depression, it would drive us totally mad. Yes, I do live in a fantasy world, where I tell myself that I am fine and that I can still deal with life and all it throws at me, but the only other option is one I don’t believe helps to even think about. That strength that everyone talks about, the ability to move forwards when what is ahead of us is unthinkable, could just as easily be seen as madness, as who on earth pushes onwards when what is ahead of them is a living hell? We do, the people who still remember just how special this whole business of living is, the people who have already lived through more than anyone should and know that they can still live well through more than even they can imagine.

Read my blog from 2 years ago today – 29/03/13 – They are married! >

A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters….

Not what I thought

I can’t face the idea of breakfast this morning, it is a three fold reason for a change not just me feeling sick. First up is the easiest one to explain, I had a late night due to a late showing of “Eastenders” that I didn’t want to record, I wanted to see it going out at the right time, so no sympathy there, totally my own fault. Second was the fact that we always eat our meal together on the first of January, just as I had done for Christmas day I had chosen fish for our main, with simple vegetables in a cream sauce, simple to cook and quick to prepare. Christmas lunch had been outstanding, so I was really looking forward to it. The salmon which had a lemon and pepper butter just had to be cooked inside it’s paper bag in the oven, when it came out it just didn’t look that appetising but I know well enough that looks isn’t everything. I added a few more veg and bit more sauce on my plate than I other wise would have, as both were my selection and the sauce my recipe and I was right to have done so. To me the lemon didn’t taste as lemon should, it tasted like a chemical and over powering for the fish, Adam loved it and ate mine and his, but I wasn’t over bothered as I still had the veg, sauce & potatoes, more than enough to fill me, plus of course there was dessert to look forward to. It was supposed to be a light gâteau with profiteroles and chocolate mouse on top, Angel DelightInstant Wipe, both hated from childhood onwards, with balls of tasteless cardboard was closer, but I ate it. All my life I have always been a person that even if I didn’t like something I could and did eat it all, I had been brought up that way, like or dislike didn’t come into it, something changed a few years ago and it was a huge change for me. I suddenly found myself questioning why I was eating foods that I really didn’t like, which I think is a fair question to ask, but for me for some reason it has turned into not eating anything in it’s place. If I don’t like what is there, I prefer just to not eat at all and I have done often for days in a row. I am sure if we were out some where, or some one else other than me had cooked it, I would still eat it out of politeness, but if it’s me who is preparing the meal, then it’s my choice. I do though still find myself with an issue when it comes to putting in the bin, what I know is perfectly good food, yes I still have those words from childhood ringing in my ears, “someone somewhere would love the chance of eating that, you don’t know how lucky you are.” I also still find it hard to get my head around how I changed myself so radically, as I have totally failed that sort of change in so many other parts of my life, I suppose not having a huge appetite these days may go a little way towards it, but it feels as though I am getting more and more picky as time goes on. The third reason didn’t arrive until 2 am, when I woke in a hurry to get to the loo, clearly my insides that don’t normally move without dynamite being applied, wanted rid. Put all three things together and I suppose it isn’t that much of a surprise that the idea of eating anything for breakfast just turned my stomach.

Last night Adam was clearly not pleased with me that I had once again turned my nose up at what he thought was a really good meal, he more than me, seems to be constantly concerned by what I will and won’t eat and the quantities when I actually do. I guess the fact that I don’t really have the ability to eat huge quantities has played a huge role in my eating habits, when you don’t really feel like eating, doing so with something that simply doesn’t appeal is doubly hard. I didn’t even think about it until this morning, but it is highly likely that the problem that appeared last month when I found that food just didn’t taste right, might have been behind last nights problem. Both the main course and dessert had huge issues, ones that now I think about it were too extreme to just brush away as something wrong with the food, it is highly likely that the problem was me. To be honest I have been throwing away an awful lot of food recently and nearly always because of how it tastes, oddly including things that were fine to start with, but half way through I simply found I couldn’t eat any more of, not always down to the quantity, but more frequently due to the taste. Like a lot of things, after the first couple of days when I suddenly found everything tasted wrong had settled, I forgot about it, one of the few joys of bad memory, I forget the bad things as quickly as I do the good. To me symptoms aren’t symptoms to bother with unless they stay around and cause me problems, they can come and go, that’s normal, but one bout of something is never enough to say that it will truly effect me going onwards. Even now I am not ready to put this fully in the realm of true symptoms, I need that bit more proof and more examples before I make that step.

I used to think that I knew all the things my body could do to me and all the tricks and oddities, but the last year has seen more things jump up and hit me in the face, then hang around as part of my life, than I can remember any previous years. I honestly though at this point in time last year that I knew my future and what progression really meant for me, it appears I was totally wrong. Progression isn’t just the old getting worse, it is also the discovery of the new and they are and can appear at any moment in time and that I should never sit back and say that it, I know my future. Realising that though does make me wonder just what this year will bring and what I will be thinking this time next year when I spend some time looking back.


Please read my blog from 2 years ago today – 02/01/13 – Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was……