Breaking down some fears

I had just taken my collection of medications and was sorting out my breakfast, but I kept tasting something odd, Fairy Liquid. I kept taking a mouthful of my coke to clear it, but there it was again and again. I think it must have been my fifth or sixth attempt to clearly it when suddenly there was something small and hard in my mouth. I wasn’t sure which as the coating had gone, but there it was, either my 60mg or 10mg morphine tablet. I now know that the coating tastes typically for all medicine, horrid and totally wrong for anything someone would want in their mouth. I also know that once again I am not swallowing things properly. It must have caught at the top of my throat and sneaked back up from there.

Swallowing for me has always been phasic. I get long spells when I have no issues at all, then suddenly, everything is sticking somewhere in the upper part of my throat. Usually it is slightly lower down, in the pocket that exists in the left side of my throat. Once there it isn’t a danger, but it can be really uncomfortable until the muscles relax again and release it. That is something that can take minutes or hours. Quite often though it catches above that point. I can think I have swallowed it and it’s gone, then suddenly, I have a mouthful of food from nowhere. I had noted recently that there was something new, a new twist if you like. With some foods, especially the noodles I love so much, that sometimes it doesn’t go down at all and just sits there over the entrance to my throat. It has to be light, just one or two noodles or possibly a single small tablet. It just lies there until I work on bringing it back up so I can try again. I guess that is what happened with the tablet, but this time I didn’t feel it. I am well aware of the danger that food holds for me, as there is a constant danger of any of it landing up in my lungs. That danger is amplified by the fact that I also have COPD. Food and/or liquid are a possible danger to everyone who has MS, it is a common problem and holds the possibility of pneumonia for us all. With my lungs not working properly, and not in the best condition, the danger grows.

I have now had two doses of pneumonia in my lifetime and I have no desire to have another, but I know that without a doubt, I will. The only good thing I can say for it is that you are so out of it, that you don’t actually care. That whole week last month that I was confined to bed, not because anyone told me to stay there, but because I simply couldn’t manage to be anywhere else, was a blur. Oddly, although it scared the hell out of Adam, it was strangely reassuring to me. I guess that we all fear being that ill. It had been so long since I had been that I couldn’t truly remember how it felt. I had developed this fear of what my future held, of spending all my time unable to breath and in pain. But what I had missed is that nature steps in and takes you away from it all. Your body might be incredibly ill, but your brain is blissful unaware of the whole thing. I suppose that is already happening to me. It is what I suppose could be phase one. I sleep for ten and a half hours four nights a week, and eleven and a half on the others, yes the change to those extra hours is working and will remain into the future. Add in my nap and phase one is there clear to see every day, over half of every day is spent asleep. I am out of it, away from my pain and away from all my problems. Already nature is protecting me from the worst of it. Those hours of sleep have slowly risen as my health has deteriorated and that is something I hadn’t really thought about. I know that there will be elements of my future that I don’t want to think about right now. But if my body is going to compensate by pulling me into sleeping more, inline with my health, well those fears diminish.

I was woken this morning, at 8:20. Not by my body, but by Adam trying hard to wake me. From the tone of his voice, there was clearly something wrong. In my sleep, I had somehow placed my elbow on the pad that operated the mattress elevator. Quite difficult to do, as the pad hangs off the side of the draw unit beside the bed. The top of the bed was slowly rising and I was completely unaware of anything happening. The same, unfortunately, couldn’t be said for Adam. Once awake and I had lowered it again, I lay there wondering at what point would it have woken me. I was still wondering when the alarm sounded ten minutes later. I actually think it would have taken until I slumped forward before I woke. I was still truly deeply asleep and totally unaware of it all. Sleep is my joy, it is a place that I am content as I feel no pain and I’m not fighting my useless brain every minute. I guess it’s probably happier too, as it can be a stupid as it likes without me telling it off. I fought hard to keep my hours of activity, I didn’t want to spend my life asleep, but strangely you do grow to be accustomed to it and you work your life around it. As long as my waking hours are constructive and feel right to me, will it really be that bad, maybe not.

Please read my blog from 2 years ago – 24/07/2013 – Slowly it happens

I have been in increased pain since early yesterday afternoon, I don’t know what triggered it, all I know is that I am in pain round the base of my ribs and it isn’t going away. Add to that a distinct feeling of I just don’t care about anything and you find a picture of me that says I just want to…..

Just three things

It’s Friday, so it’s college day for Adam and the first of three days that I sleep until 8:30 and it has totally thrown me. I guess this is something that I am slowly going to get used to. It’s just I don’t really know what I am supposed to be doing. It was 9:20 before I even took my morning meds, my body and brain arguing with me all the way. I know I will never understand how I can sleep for 11:30 hours without even being aware of a second of it passing, but if my body didn’t need it, it wouldn’t sleep it.

I managed yesterday to finish off setting up my new site, so from today, I am going to be running them in tandem and will do so at least until I have managed to email everyone on my subscriber list. It’s not going to be a one-day process that is for sure. I don’t know what is wrong with it, but Chrome isn’t happy this morning, it keeps flickering and it is putting a high load onto my PC. I am slowly closing down each site I have open to see if it is one of them, if not then I know it is Chrome itself and I haven’t a clue how to fix it if that is the issue. It is beginning to look as at least a part of today is going to be spent on long annoying searches on Google, as this load issue isn’t good for my PC.

Adam and I have been watching a program on Channel 4 over the last few weeks called “humans”. It is set in the future where human-looking robots are common place. In fact, most of the world are unemployed because of them. It sparked a conversation last night about human attachment to machines and if we would really behave the way it is depicted in the program. I think the show is spot on, people are already emotionally connected to their cars, giving them names and often talking to them. I give cars as an example, but I have know people who have named almost everything in their home from the washing machine to their TV and none of them look human in any way. Although I haven’t given it a name, I know for a fact that I am emotionally attached to my PC. It could be because it is my link to life, but I believe it goes a bit deeper than that. I bought it as a combination of several things, starting with its power to carry out all my tasks for work, whilst being connected to three machines in my office at the same time. But to me it was the ultimate machine available at the time and I could justify the cost. Behind it all though was I the fact that I feel in love with it at first sight. She is a she and arrived with the name Aurora, so I didn’t need to name her, but I have never actually used that name. As for talking to her, I do it all the time. Should anything happen to her, I know without a doubt that I would fall to bits as that was exactly what I did when her hard drive had to be replaced. I haven’t gone as far as taking her out for lunch, but if we were both mobile, both looked as though we were both human, well I might. That is with something that can’t even talk back, our emotional attachment to something that did, would be much higher.

It made me realise just how few things there are in my life now. By that, I mean things that without I don’t know exactly what I would do. Adam, of course, doesn’t come into this, as he is already a fully formed walking talking human. My PC comes top of my list, as I said she is my link to life and the majority of my waking hours are spent sat here with her. That was a no brainer. Next my bed, it is actually the place I now spend the majority of my life, so incredibly important as is the third on my list, the TV. There is the world, I have this huge drive to know what is happening out there. If I were to lose the 24-hour news, I would be lost. I now watch more than 4 hours news every day. Listening to the same stories being told by the same people several times as the hours pass. Waiting for a major story to break as I couldn’t bear the idea that I had missed something. My attachment to it has become obsessive, but I need to know as there is no other way that I will know. I don’t have those work colleges who read newspapers and chatter all the time about what is happening in the world. My connection is the one eyed box in the corner of my room. It also brings me education. I love to learn, to find out new things and with millions of documentaries available all the time, I have learning at my fingertips. God bless the BBC, Nat Geo and Discovery, Yesterday and History. Yes, I do watch other channels occasionally but those are my main ones.

Three items, that’s it. Three items that without I would be miserable. Everything else that fills our house is beautiful and if I had a choice I wouldn’t want to be without, but those three are essential. It’s amazing how little we really need and how much other stuff that we collect because we like it, we don’t need any of it. Like it or not, I am emotionally attached to the majority of the things that fill our home. Break any of my crystal and I would cry, break my PC, my bed or my TV and it would break my heart. If each of us were totally honest, I am reasonably sure that everyone out there could bring down everything they own to just a handful of essential items, the rest is all about want. It’s one of the things about being housebound, your life is lived under a microscope. Everything is brought down in size, our wants, needs and desires are concentrated as the options have become concentrated as well. A lot of people have challenged me over the years about my twitter name, Ltd_to_two. When I explain it is a nod to my blog title, “Two rooms plus utilities” and my writing name of “Living in a limited world”, they always tell me that I am not limited. They say things like “you have your PC and your mind and are more attached to life than many who are not housebound”. They might be right in some ways, but in others they are totally wrong.

My physical world is the size of my flat, hence the “Two rooms plus utilities”. That is an undeniable fact, there isn’t a door I can walk out of, well there is, but I would only reach the bottom of those stairs in one way, crumpled at the bottom. As they are made of sandstone, well the result wouldn’t be pretty. Freedom comes through my PC and TV, but they don’t remove those limitations. I defy anyone to not become attached to their freedom. A few years ago I would have seemed the number of hours I spend with them as totally unhealthy, now I see it as totally the opposite. They are part of the reason that I have staved off that monster that many with chronic illness fall pray to, depression.

Give me a sim that reacted to me as a person, talked and cared for me when Adam wasn’t around, that did all the things that I find hard to do for me and I would very quickly attach to them too. Humans are emotional creatures, we will attach to anything that helps us, keeps us safe and emotionally supports us. My three items are my life support system and I couldn’t live happily without any of them.

Please read my post from 2 years ago – 17/07/2013 – Pinning down what is important

Pencilled in for a phone call this morning is once again the doctor. I woke twice during the night first at 11:25 and second at 7:11, both times I was forced to do my impression of running as I was not only needed to go to the loo, but I had no control to help me get there, the final sign of my having a bladder infection. With that now clear, I also know why I have been still wiped despite the lowering of the temperature. I was actually so wiped yesterday that I…..

Processing happiness

I managed to make a little space in my days over the last week and I used it to change a rebuild everything that I now do on Twitter. I have been wanting to for quite a while now as once again it had become just that bit too much for me, so although nothing has vanished, everything has been altered in some way, mainly reduced in their frequency which means fewer tweets and less work. When I look at what I do these days compared to what I started out doing, it was just madness the amount of tweets I once sent out, some might say it still is, but I did always set out to do it my way and that hasn’t changed. Over the next few days, I know without a doubt everyone will spot the changes and I just hope it still keeps everyone happy and not feeling as though I am ignoring them, as the mentions were the thing that needed the most pruning, something I started about a month ago. It’s really hard when your health forces you into making changes, changes that you know without a doubt you wouldn’t have made for any other reason, but that is what happens with conditions like mine, we have to keep changing to keep up with what it is doing to us.

It doesn’t matter whether we are ill or not, one of the things that it is impossible to do is to not look back on our lives. Those people who tell you to just forget about it, or not think about it are mad and personally, I actually believe that looking backwards is often the best way of working out not just who we were then, but who we are now. There are events in everyone’s lives that none of us will ever escape, those events that can’t be forgotten or brushed over, but no matter how painful we are always drawn back to by events, or just our mind’s still trying to make some kind of sense out of the whole things. I for one have found that the worst thing possible to do with those memories is to try and push them into some kind of box and keep them there, it doesn’t work, they always explode suddenly and you don’t just feel them, you relive them in probably a more painful fashion than you did originally. One of the biggest problems of our modern world is we don’t have space to think, there is always something to distracts us, gives us an excuse to pack those thoughts away. There is one thing that totally amazes me and that is people who say in bemusement that they can’t sleep because they can’t shut up their minds, why are they so surprised by that fact, if you don’t think about things, they will make you think once you have the peace and quiet to do so. To me it has been the most positive thing to have come out of being housebound, I have had time to think, time to go over all those things that were my life and to see them often in a very different light, that’s why I said “to see who you were”, I have learned more about me in the last 8 years, than I learned in the previous 45 and the biggest thing I have learned is if you have things pushing their way into your mind, it is because there is something wrong with the way you are remembering it and all too often, it is the viewpoint that’s wrong, the fact that I hadn’t looked at it from the viewpoint of the others involved.

A couple of years ago I wrote a post about forgiveness and how it was all too often ourself that we had to forgive, but not all memories are about apportioning blame, most are far more about emotions, our times of both happiness and sadness, if we are lucky exceptionally lucky the happiness memories out way all others. There is a myth in my head that says everyone in this world is happier than I am, I know it’s a myth because everything I read tells me that everyone out there feels ruffly about the same. It has taken me a long time to realise that being content is actually the reality of how most of us live, somewhere along the line we have this black and white view imprinted on us, that you are either happy or sad and there is no in between, but if there were the truth everyone would be walking around either in fits of tears or manically laughing, contentment is a very under appreciated state. When I found myself housebound I also found myself with the time to work through a million things, forgiveness was one of the first and it took a lot of soul-searching and lot of pain but I still stick to what I said in 2013, it is so worth doing, it changed me into a much more mellow person inside, I was no longer pulling myself apart and fighting my way through a life that had so many painful events in it that the past was a dangerous place. I was lucky in one way, that I had tried to do the same thing once before when I first moved to Glasgow, but I had held onto some who I was just not ready to forgive at that point, two years ago I at last forgave both my Father and the man who raped me when I was 12. It is hard to grow up when you are permanently being held back by so much hate and it holds you back emotionally as well, I had spent most of my adult years still acting like a child when I was confronted by anything I didn’t like, want to face or wanted to admit. My memories had been overshadowed by those spectators who I couldn’t put to rest and finally forgiving was a wonderful feeling. In the last few years, I have spent a lot of time going through my past, well as I said the other day, new memories are hard to make when every day is identical, but someone the other day said something that made me sit up and think again.

It was in response to one of my tweets, I can’t remember exactly which one now, I know I should have made a note of it, but I didn’t. They too had a chronic illness, but they were trying so hard to fight against it and to get back the life they had before their illness hit. It was something I never once tried, I had had so many different lives, that the whole idea of trying to get back any of them, well it didn’t make sense to me, I have started over so many times that starting over again seemed like the natural thing to do and I just did it. With every change that my health has imposed on me, I have readjusted and restarted what in many ways is another book in my growing life history. I have always taken with me what I had learned but not once trying to hold onto or return to what was now a closed book. It never once occurred to me that anyone else out there would be trying to do anything else, yet here I had it in front of me in black and white, someone who couldn’t move forward because all they were doing was looking back. Part of forgiving and letting go is the acceptance that holding onto something that can’t be changed is only ever destructive to ourselves. It doesn’t matter if it is a painful memory or a lifestyle that is now out of reach, if we can’t let go it will do only one thing and that is to eat away at us and make us unhappy and probably even depressed as time goes on. To be able to survive not just being chronically ill, but in my case housebound, I had to let go not just of my past but everything about your health as well. It is easy to get caught up in the blame game, to hold this doctor or that doctor responsible for us not being diagnosed sooner rather than when it eventually happened, to spend your life ripping everything to bits in search for the cause, the thing that you did wrong that meant you got ill, that will make your health worse. Draw a line under it, accept that it happened the way it did and this is where you are now, there is no way back, nothing you can change and if you ever want to be happy again, start a new life, this is day one, this is the start of something new and something exciting as the unknown always is.

It took me a while, like I suppose it does everyone to have that first day that I was happy, that first day where I didn’t want to punch the lights out of everyone who looked at me wrong or didn’t understand that I was ill or who had the misfortune to work in the medical profession, but it happened, I did smile because I wanted to not because others told me to. It took me even longer to realise that I didn’t have to be happy all the time to not be depressed the thing everyone seemed to be waiting for and that being content was far more important. Content is a wonderful thing, content means that you have stopped hating, stopped blaming and started living. It is the first step that follows acceptance, as until you do you will never be content. I have done it so many times in the last 14 years that I now do it without thinking about it or even planning it. Every time I know that things are just too much for me, I wipe the board clean and I rebuild taking into account what is too much, what is destroying my contentment. I don’t do it daily and I don’t do it lightly and yes I do still try to hold onto the things that I shouldn’t from time to time, but I never try to go back, as that is the perfect way to land up in a worse state than I was already in.

Just as I said a few days ago, asking yourself “am I happy” is something we all should be prepared to do every now and then, if your not well fix it, but just as important once your health has gone is to ask yourself “am I coping”, if your not well fix that as well. My answer came back no a while ago, but I always give myself a window to see if things improve, they didn’t so I made the changes to my day that I hope will bring back the answer that I need of yes. If any of us are going to live as well as we can for as long as we can, we have to adjust, not once, but probably more times than we ever care to think of, but once you have started again a few times, it just becomes part of your life, not a horrific process that scares the hell out of you, aim for contentment and enjoy the happiness that comes with it.

Read my blog from 2 years ago today – 17/05/13 – Interpretations of a good life

After my panic of the other night yesterday was a totally ordinary and straightforward day, thankfully! All those things that raise your pulse and all those chemicals that race around when your brain has lost control, maybe not only useful in the past and captured for profit by thrill seekers, but I now know that I would happily live my life without them, as I can only see one way of equaling all of them and that is not knowing…….

Dreams caught in time

Having just enjoyed one of my favourite treats, oatcakes and as it is breakfast I ate them with ginger marmalade, I am now suffering the problem of having not been to the dentist in 8 years. No, I don’t have toothache, just two broken teeth that everything of that texture seems to take pure joy in lodging themselves in and can’t be shifted by my tongue alone, probably why it used to be fashionable for toothpicks to be in every home, they were needed daily. I know there is a dental service available at the local hospital for people who are housebound, it has to be within a hospital as to get there clearly I need an ambulance with a stairclimber just to get me out of here and home again and they are only available if you are going to a hospital. I find that so maddening, it is almost as though by being housebound, we suddenly don’t have the same right to health and is the reason why I don’t ever really see my GP. I don’t expect them to assist to take me out just for the hell of it, but surely seeing our GP’s and dentist should fit into the same bracket as seeing a hospital consultant, it is after all, still our health. Either way, I still might not have been to the dentist any sooner as I so hate that stair climber and the whole process as I have said before, of just getting ready to fo anywhere is draining and best to be avoided if at all possible. Just sitting here thinking about it has made me decide that I can live a bit longer with strange gaps where tooth enamel once was.

It’s odd how all our values change once we are ill, so many of the things that we held as important and life essential, seem to just fade and become a dusty memory and of no value at all. Chronic illness doesn’t just destroy our health, it destroys our dreams and diminishes our belief in not just ourselves but in everything that once seemed so clear and so simple. When Adam and I got married, I knew without the slightest doubt that our dreams were very different from each other, not because we had spoken about them, we were still at that stage of love when words aren’t needed as be felt we understood the other without them. I didn’t need words to tell me what I knew was a fact, because I was 38 and he was 21, I knew his head was filled with wild hope about riches, success and a long extravagant life together and all those other fantasies we believe will just happen at that age, mine was filled with stability, planning and financial security. It was Adam who wanted to buy a house, I was strongly of the opinion that they were nothing but money pits and unless you were going to have children to pass on your home and money to, not a great move at all, but I couldn’t say no to him, his wide-eyed fantasy was possible, but on my terms. I refused to have a huge mortgage around our necks, it had to be affordable and it had to mean we could still have a life, not one spent living on baked beans and water. So we bought our flat, the one I am now so much in love with and he wishes I hadn’t given in over, as now we would be housed somewhere more suitable for me. I didn’t have the time to secure our future, to build up a nest egg that would mean I could retire and enjoy a life with Adam for as long as it lasted, or the slightest chance of securing a future for him once I was gone, as within 2 years, I was too ill to be allowed to dream.

Being diagnosed with a progressive degenerative condition takes away all our options. From the day I had to walk into my office and tell my employers that I had PRMS, I also knew that was the day when I lost all power over my future. I lost the biggest and strongest bargaining position that employees have, to leave and find a new job if they don’t pay you what you are worth. Other than the annual increment that every employee received, I never had a pay rise from that day on. They knew just as I did that I couldn’t just leave and get another job and as my health got worse and I needed at first a stick, then a wheelchair, the harder they drove to get every single penny of what they paid me and more. 10 years on the same wages meant that I was miles behind what others in other companies earned for doing half what I did and every last dream I had was snuffed out. Yes, there are laws out there to protect those in my position, but use them and it goes without saying you really will never work again and I needed I thought to do everything I could to build up our home and make it the best I could, while I could. My ambition and only one became to work for just one more day, week or month, to have a wage for just one more day, week or month, that was my only focus, not my health or what was happening to anyone else, I had to make things as perfect as I could right then as I might not be here tomorrow to do so.

I no longer had or have, any dreams that look any further into the future than those same days, weeks or months, at least not for me, my health has taken them all away. Becoming housebound whilst still working, put me in the oddest position, but one that allowed me to live in a very different way and changed my future even more. I don’t know why but it gave me back a strange feeling of control over what was happening to me, a limited life had it’s advantages and it’s bonuses that I wish I had seen long before and once I was made redundant and eventually I had totally broken that fear of not earning a wage again, I found freedom. Once there is no possible future left, well oddly other than depressing, it is actually liberating. My health has taken every single thing that we have in our heads about what having a future means and replaced it with total freedom. I have lost the concept of weekdays, weekends and holidays, I no longer have to think beyond this hour as what can the one after it hold other than more of the same, freedom of thought and of heart. No matter what we like to believe, true freedom of thought doesn’t exist when we are locked into the world of work, a world we are told is our right and what our dreams can be achieved through, but it’s not.

My memories may be muddled now and my body crippled but I don’t remember ever feeling as free as I do now. I don’t have the money to do any of the things I once thought important, I don’t know where the money will come from just to cover the bills at times, but we always manage somehow and most importantly we still have each other. For everything that the outside world would say I have lost, I have gained something in its place, I just wish that I didn’t have to live in pain to have it. Adam is approaching the age I was when we first met and he has suddenly discovered the ambition for financial security, I truly hope that he too will eventually understand the freedom I feel, but without any of the pain or physical confinement.

Please read my blog from 2 years ago today – 25/02/13 – Something ODD? 

Well an hour ago I know I had something that I needed, really needed to write about today, I just wish I had the slightest idea what it was now. Yes I know it is a constant problem and one that you would have thought I would have taken the logical step of writing things down when they are in my head, but I always forget to do it……………

Who me?

I was asked a question yesterday, one that sort of surprised me as it isn’t something I have ever greatly thought about. It was quite simple, I was asked do I ever ask “Why me?”, I know that other people ask those type of questions, but I have never felt that way about anything. There have been so many things that have happened to me in my life when I could have asked “Why me?” but I haven’t. I remember other people saying things like “You didn’t deserve that”, when my son died aged just 12 days, I also remember feeling truly confused that they should even think that way. Nothing had happened to me, it was my baby who died, not me, I was still here and still continuing, it was him that didn’t survive, it was him their thoughts should have been with, not me. I know that people do ask “Why me?” when they become ill, but I find it a question that has no purpose, illness happens, it is the fickle finger of fate that points at you and that is it, it has nothing to do with what you have or haven’t done. No one deserves anything bad to happen to them, regardless what others might think, to me asking that is a bit like saying “I didn’t deserve this, so why doesn’t that person over there have it instead?”, I couldn’t wish my life on anyone and I do mean anyone. It’s not that it’s a bad life, it’s not, but it’s not the life I wanted, so I doubt anyone else would want it either.

The thing about “Why me?” question is, few seems to ask it about the good things in life, I know without a doubt I have asked and did ask “Why me?” when a gorgeous young man, who I was old enough, just, to be his mother wanted to be with me? I have asked “Why me?” many time, when unbelievably good things have happened to me, so I guess that it comes from how we see our lives up to that point in time. Despite my having tried my hardest, not to be a victim, when your childhood is as screwed up as mine was it can be hard not to at times, to expect the future to be the same. I know for a fact that it wasn’t until I left my first husband that I actually thought that there was a possibility of a bright future and that it was down to me from then on, it was my choices that would determine it. I’m not saying I got it all right from then on, I made mistakes, I’m human. My health had been up and down for so long that I had learned to accept it as part of my life and although my diagnosis did knock me sideways, after a few days of feeling sorry for myself, I picked myself up and got on with it. I totally believe that acceptance of your condition is vital, without it you can’t move on and you have simply given up your life to it without it even having to try. The only answer I can come up with to “Why me?” is, “Why not me?”.

Despite having been taking the medication, the doctor prescribed and altering it as he suggested in the past 9 days, I have managed to only pass one large lump and a small amount of wind. Nothing has really changed in the slightest other than I managed to have one full nights sleep. The first night I dropped the senna from four to just two tablets, the pain in my lower stomach dropped away, it was so good to sleep straight through. Last night I wasn’t so lucky, but I couldn’t blame that on any tablets, just plain ordinary pain caused by my diaphragm, pain that is still going on. I don’t know what has aggravated it, but it has been much tighter than usual for the last couple of days, being totally honest, well it never seems to fully let go any longer. It has been that way for a few months, there have been days along the way where I would get extra spasm over and above, when the pain reached the point it is right now, the only difference is, it’s stopped letting go. I don’t think that the chair we have on loan whilst the settee is being done is helping, it has to be one of the most uncomfortable chairs I have ever had the miss fortune of sitting on, but at least I am not on the floor. Sitting here just now thinking about it, it does seem as though there has been a small step up in activity of everything. Last night Adam and I actually spent about half an hour trying to work out what on earth has changed that means I am spending so much time scratching. It is now over two months since I first noticed it, that I had to be scratching myself when I am asleep, I keep finding these lines of tiny scabs where I have dragged the sharp corner of one of my nails through my skin. It was just over a week ago though that I realised that I was suddenly scratching my head a lot, well with it being somewhere you don’t really touch without noticing and with my nails being a little too sharp, I can feel it as well. We have been through every possibility we could think of from washing powder, creams, meds, food and even the totally unlikely one of fleas or mites, but can come up with nothing. I do know though that I have trouble with nerves that twitch and cause some areas to become itchy, the worst being the tip of my nose, it often drives me totally nuts. So that is where we are at on this problem, left once again with no other answer than it has to be once more my PRMS, so it looks as though I am going to have to live with itchy eyelashes, ears, palms of hands, back and toes as no cream or potion has worked, probably more proof it’s inside rather than out.

I keep making the same mistake in thinking that there can’t possibly be another single part of me that could possibly join in this game of drive Pam mad. Why I think this should ever happen, I don’t have the slightest idea because if you think about it, there isn’t one single tiny piece of us that doesn’t have nerves within it, so why do I keep insisting this has to be it, nothing else can possibly be affected. I honestly thought that when the doctor told me that my Vagal nerve was now involved in the conspiracy, that that had to be the worst of it over, as the Vagal nerve controls almost anything of importance. At the time I didn’t realise that PRMS wasn’t just after the important, it would be after anything that it could possibly find to play with and as life has proved, it is often the non-dramatic that are the things that annoy and disrupt our lives the most.


Please read my blog from 2 years ago today – 13/02/13 – Impact point after impact point

My concept of time is clearly no longer anything like it was in the past. I know they say as you get older time moves faster but when you have 6 hours a day less of it, well clearly that is going to have an impact. Adams coming and goings and the TV schedules are the only things that really stamps time on to any day. I was thinking earlier that if…….