Determined to make a change

I never realised just what I was taking on when I decided that I was going to keep this blog, it’s not that it is a hard thing to do on most levels, but it can be hard to be objective about something so personal as my health and my life. I have always tried hard to see things from others points of views and to appreciate that my view may not actually be right. I know that is the reason why throughout my writings you will come across reminders to the reader that I am not a doctor or that it is my belief or something that I have read. I have always thought that it was a good idea for all of us to stop from time to time and to look backwards and question ourselves as to our reasons for something we did or said and to just double check if we would still do the same thing or if we have learned with time that we did actually get it totally wrong or completely right, as if we don’t question ourselves, how do we grow. Those who have read my blog from the start will know that throughout it there are stories from my past, some have a medical connection and many of them are also medical disasters. I don’t know what it was that made me start to think about it yesterday, but I have always held to a view that there really are few things in life that complaining or money can fix and that although there were several times that I could have made a claim against a doctor or a hospital, I never have done, on the principal that they are humans and humans make mistakes and accidents happen, but yesterday, I began to change that point of view.

I think it was triggered when I was writing about the fact that I had been to see the consultants at Gastrology two years ago and they had done their tests and dismissed me with the words it is your MS and without the slightest bit of help as to how to manage my failing intestines. I guess I started to get angry about it, just as I got angry a few days ago about the fact that much of the world is closed off to those of us who are ill and I began to wonder what gave them the right to treat anyone that way. They knew just as I did that as my PRMS progressed that the situation with my bowels wasn’t going to get any better, they knew that I was already on MST and that that was going to be increased as time past and that Morphine is a drug that aggravates constipation, so sending me home without any sort of management plan, or at least a list of the best drugs to use to alleviate the problem, just wasn’t right. I know that I have a brain and that I did manage it myself for the first year, but when it started going wrong and the pain just kept building well I did try asking my GP for help, he of course referred back to their findings and I expect, equally dismissed it, other than prescribing the only medication I never managed to get to grips with. I know I have said before that I don’t blame my GP in any way for this mess, he sent me to the specialists and they told him what they thought, although I would actually quite like to see those thoughts, but I digress. Since December, I haven’t had a moments peace from discomfort and long periods of pain along with shorter periods of acute almost unbearable pain and the more I think about it, the more angry I am getting about it. I can’t get it out of my head that if they had handled things better two years ago, I wouldn’t have had to have gone through all this and I wouldn’t be in the position that I am in now.

I have always found standing up to doctors difficult, simply because I was brought up not to. I come from the generation where we were told that doctors where people of authority and they knew best, so regardless of how wrong or how much pain and discomfort you are in, what they say is always right and fighting that is hard. I know when we saw the last doctor at Gastrology that I was rather meek in my approach, I just accepted that they had found nothing other than my MS and when I asked what I was to do about the pain and discomfort or how long was I to leave myself without taking laxatives and how strong a dose I should take, well the answers weren’t good enough, because they didn’t really answer it at all. The other day I asked how do you knock on doors when you can’t get to that door, well this is one door that I am being sent to and it is one door that I have at least a chance of knocking on hardly. I am not going to go in there all guns blazing, that would be stupid, but I am not going to accept being sent away without at the very least a system in place that deals with the issues I have and hopefully at least one or more doctors who have at the very least a clear picture of how the whole situation impacts on someone with PRMS or any other long-term condition, especially when they are housebound and can’t get assistance from the system the way it is run now. I still don’t believe in suing the medical profession at every turn, but I do see that if I don’t make my views knows as widely as I can, if I don’t try to educate them by showing them what their actions from 2 years ago are responsible for, that nothing will ever change, nor that the view that some patients can just be dismissed because they have an underlying condition that is causing it, just isn’t good enough.

I don’t have the answers waiting for me to just read out to them, but I do know that regardless what they want to do, there has to be something better than what they are doing right now. I told them two years ago on my first visit to Gastrology that I already had a diagnosed issue with my Vasovagal and when it was diagnosed the heart specialist had said that he felt due to my description that my PRMS was as he put it “Playing with my Vagal nerve”, which is responsible for many other functions that I have or have had problems with, such as breathing and interestingly although not named when they diagnosed my COPD, the Vagal nerve is the nerve that controls the mechanics of breathing, exactly the part my PRMS is playing in the problems I have breathing. It can cause as I also know spasms in your throat making it hard to eat and speak and surprise, surprise, it also control the processing of food right the way through our bodies. I told them that I believed that the nerves to my bowels were then failing, something the MS nurses agreed about, but not my GP at the time, he at least now agrees, all of that was ignored. I know I have to tread carefully and maybe not lay it out so blankly as I just did, as I also remember the doctor smirking when I told her what I knew at that point.

This time I want action of some sort and I also want them to learn that PRMS can cause all these problems and that they don’t just go away, the patient might for a while, but we come back worse than the time before. I don’t want to be dismissed and I don’t want anyone else with my condition to be dismissed ever again. Now, I just have to work out how to make it happen.

Read my blog from 2 years ago today – 16/03/13 – Body listening >

Sometimes I think that I should start making a list of things I talk about on here and the favorite phrases I attach to them, with a limit to the number of times I can say it before it has to be changed. Then I come back to ones like ‘listening to your body’, how do I change that, how do you say it in another way and hold on to its importance and its value, I don’t think you can…..