Breaking the monster

There is something very odd about reading your own words back, especially when they were written a couple of years ago, it is like looking at yourself through someone else’s eyes as you had totally forgotten every word of it, but it is still familiar. I don’t read all the posts linked at the bottom of each page, just glance through them normally, but reading how I described things that were relevant to me at the time, is enlightening. I realise just how we all change, even over such a short period of time as two years and even when you are in your 50’s, when you would expect the changes to have either stopped or slowed down at the very least. I know that every bit of information we add to our knowledge daily has to change us in some way, that is just logical, but the fact that it never ends seems to me not just amazing, but astounding. There are people who seem to never change at all, stuck totally with what they learned up to a set point in their lives and ignoring or denying any argument that might make their views wrong. I find it impossible to understand people like that, maybe because I have never accepted that there is just one version of right and one of wrong, there are millions of different angles that everything should be look  and considered from, each view changes when you allow for the one before, as they say, nothing is ever written in stone. Although I never had the opportunity, I think I would have been a total nightmare if I had ever sat on a jury, we would have been in deliberations forever, I would not have been able to resist pointing out and going through all the possibilities, before allowing myself to vote.

I know that the way I feel about my health has changed so much over the years, with only one constant, I can’t change what is happening to me. As I said yesterday adjusting never ends, but there is more to it than just adjusting, it is deeper than that. I have always said the first thing anyone has to do is to accept, you can’t do anything until you accept and know what is happening to you, the bit that changes there is the knowing, we all learn almost daily that bit more about our own bodies and through contact with others. A million view of the same subject, growing all the time and only you there to analyse what it means to your health and your life. Once you have a diagnosis you normally only see your neurologist once a year, I several years stopped seeing them at all. The last time I was there, I knew that I should have booked my next appointment before I left, but he didn’t give me the usual reminder, I took the opportunity to just not do it. In all honesty, I had had enough of wasting my time going there, I never came away with what I wanted, either a cure or at the very least some knowledge that would help me move on to the next stage, I usually left knowing nothing. 15 minutes of my telling him what I always seemed to be telling him and nothing, but him sitting there nodding his head and saying either nothing or very little, achieved what? I can nod myself and say little, I didn’t need someone else to do that for me.

Cutting him out of the loop has put me in what I think is a bit of a unique situation, as for years it has been me analysing my condition, even prescribing and following my own system of care for my condition. Reading back over the years has made me see just how far I have come on my own, from wondering about things in a vague way to fully understanding and knowing what they are and how their effect has changed and progressed. My medical record for the last two years are right here and in much more detail than any medical file ever has. I know that sometimes it can take me a long time to work some things out, but it has been my experience that it takes most of the doctors I have known even longer. I don’t claim to have all the answers, but I do know how things feel and how they affect my life, take last years constant round of medical tests, all started just because I was lost and needed more facts. The result was my being told what I knew, that there is something wrong with my lungs and that my MS is in on the deal. It took them three months, all they added was another couple of tags COPD, oh and the unexpected gallstones. I have now been living with a diaphragm in spasm for over a year, that is not right, but it is just the way it is, I have become used to it, the feeling of wearing a 2 inch wide band around me, somehow tighter at the front than the back, but always there, worse when I lie down than when I am sitting up. All the doctors did for me was to remove the fear I had, it isn’t going to kill me, yet.

Fear has been the only thing that doctors have actually really helped me with, other than giving me meds to help me deal with the pain. It is fear that gets to all of us, if nothing else doctors have mastered the art of brushing over the things that scare us. Not always because we believe them, but because we believe in the myth that if it was serious they would be doing something about it, despite the fact that experience tells me they can do very little about most things. Fear is the one thing that you have to be able to over come, if not you would literally scare yourself to death. I almost bet everyone has found themselves at some point lying in bed and suddenly feeling their heart thumping, then desperately trying to find their pulse just in case it suddenly stops or does something mad. That fear can run away with you, especially when you have a body that does thousand of mad things every day, out of the list of things you have to do to survive chronic illness, one of the major things is to conquer your fear, or it will kill you through stress if nothing else.

It is one of the things I have picked up on in my writing and that is my own fears have lessened over the last couple of years. I honestly think that writing has helped me with that one, it has allowed me to put them all into words, once written somehow they don’t have the same power or strength to hurt me. I can to some extent now sooth my own fears when something new happens, I can analyse them, match them to others and put them in there place on the scale of things that make up life. They haven’t all gone, waking this morning with a direct pain through my head that still hasn’t gone just spread out from its original lightning like path from the top of my skull to my new. As always it started that fear of is this a lesion forming, or a stroke, or an aneurysm, you always have to hold onto the simple the boring and the one most likely, which means I just have a headache. Break the fear and look at it logically and analytically and you will find the simple answer just waiting to be understood.


Please read my blog from 2 years ago today – 29/04/12 – A fighter, me, why? 

I have frequently heard and read in more recent months, that I am a fighter, a survive, courageous, a strong person and several others in the same line, which I personally find a little hard to accept. Firstly as they don’t sound to me, like me and secondly I don’t think I deserve such titles. We, I suppose, all never see what others see in us, as we each have an image in our minds, of exactly who we are, in body and mind. We all like to think that that is what other see, but over the years, I have discovered that other never see that person.

I as most when a teenager thought that everywhere I went, everyone saw me and everyone looked and remembered. I was an arrogant little pain in the butt who thought herself beautiful and…..

Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual who reads far more into things than were ever intended, you know the person who would take a comment and run a million miles with it, re reading and re assessing what was behind it. So much so that I would worry about it well into the night, going over each word searching for what they meant by it or what I should have said in reply. I lost count how many times I worried because of some comment made by my boss trying to work out the meaning behind it, when in fact it had no meaning at all and was never mentioned again. I know there are a lot of people out there just like me, we seem to have been born with this need to keep the world on the happy side and are convinced that everything always came back to us, it was our fault when others didn’t understand, or our fault when something silly went wrong and it was our job to fix it all. Yesterday I noticed for the first time that I haven’t felt like that for a really long time.

It is difficult to explain to those who haven’t had their lives turned upside down, that as time goes on you start to find more and more pluses that actually make when brought together, the reasons for why they begin to feel happy in their new lives. I know without having to think to hard about it, that things actually began to improve for me when I was forced to stop going into the office daily, or actually at all, that many of the smaller symptoms started to disappear and some of the more major ones to lesson, those improvements even included learning to eat again and eventually getting rid of my feeding tube. I honestly think that we under estimate hugely the effects of living in our modern world actually put upon us. All of us need to earn a living to be part of the working world, we all want our own homes and to keep them decorated and clean, on top of that we have relationships and families, we pile on more and more and it just keeps piling up. For me, unpicking all those pile at first, brought about huge changes that were incredibly positive in it’s effects. Getting rid of the sleepless night, the brain never being allowed to be free of worry and problems, or the body never allowed to rest, changed everything. It wasn’t my choice to be housebound, but in the first two or three years I really did improve in my health, not just physically but mentally, my life became living again. As long as I kept everything on the level, simple and unchanging I remained as close to well as I had done in years. Most importantly I learned how to deal with even the minor stress of daily life, I didn’t get in a strop just because I couldn’t open a bottle of coke, I worked on it, not swore at it. Somewhere in that time I stopped blaming myself for the problems of the world and I became unstressed and happy with the way life was. I had found happiness in a place I never thought anyone could and why I continually tell people that being housebound is far from the worst thing that can happen to anyone. It is really like living in a different world as you are in a peaceful place, free from the things that actually were pulling you down, making your health worse than it really was.

I know for a fact that I my health improved, just as it did when I had the chemotherapy, step by step I got better, not well enough to go and try it all again and in honesty I didn’t want to take the risk. I was better, I had more energy, less pain and a feeling of living not existing, that last one was by far the most important. Everything stayed steady but the improvements came to an end, steady was good, steady was something I could accept but over the last few months I know without the slightest doubt that in the last year the downwards slope has returned. I can track it because it is so clear, this isn’t anything to do with the weather, as well it is all the time not just for a short while then settling again. I haven’t managed to write a single post with any fluidity for over 3 months, nothing is easy to do that requires my brain, even talking to people is getting harder and harder. Jake came here yesterday, usually we would spend a couple of hours just talking about rubbish, but yesterday he was here for less and 30 mins, he asked if I wanted him to go as I was clearly exhausted and he could see it without any doubt. Everything has become a struggle no matter how simple or everyday it would be to others, to me it is now really hard. If you don’t see it, well jump back several months in what I write and look for yourself, it’s all there.

I push myself everyday now just to write and I push for the number of words as that way, well that way at least I know how long I should be writing for and in what length of time. The time stretches and stretches, not long ago 5000 words was a quick 30 to 40 mins, so far today this has taken nearly 2 hours. I can’t write for many reasons, but the daftest and most annoying is my fingers no longer hit the keys they are supposed to and correcting my spelling would drive anyone mad. Less than a year ago I slept like anyone else with an hour long nap in the afternoon, now I sleep more than anything else, 13 hours plus is the norm. Talking now is madness and I know already that even Adam can find it to much to deal with as I just don’t make sense, the thought processes just don’t work and although writing is easier, well I am loosing that at times as well. I just forget what I am saying and what I have already said, reading back all the time to find I have already written what I was about to write is a common situation.

I have been so focused on my lungs, understandably I suppose, that I just haven’t been keep an eye on what my MS has been up to. In the last week or so I started to pay attention, but I wasn’t looking at the detail, just skimming over the obvious signs. I don’t know if it was Jake being here or something that has been trying to get me to think for a while but yesterday, well it woke me up and made me not just drop in the odd comment, but I had to pay attention and I had to really think about just what is happening. Even though I know my health has changed massively and the shift is clearly downwards, I still have that wonderful feeling of happiness, as despite what my body is doing I have managed to hold on to that peacefulness, the only pressure on me, now comes from me alone and I know that now without a doubt. 6000+ words, an over run I know but I have to start refocusing on what is happening, nearly 3 hours and very much time to move on.