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…..

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s