It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD, that to take them for anything else, well it just doesn’t feel right. I think I have taken them twice now due to the pain in my stomach and both times I have gone down with a huge spoonful of guilt. I know that is madness and that pain is pain, but it’s just me and I can’t help it, something to do with the way I was brought up I suppose. I sat in the kitchen for a few minutes and had a cigarette, not just because of the pain as I think I was actually woken by the fact I had thrown the covers off myself and I was freezing. It wasn’t until I tried to move that I discovered the pain, but by putting on two dressing gowns and moving around a little, well I knew it would warm me up quicker. Last night wasn’t the first time this happened, but when I woke I was also quickly aware of flashing lights behind my eyelids and white noise along with a sharp squeal, far worse than the tinnitus I have lived with for years. I didn’t have a headache or anything even similar, just this terrible noise and the lights which I couldn’t just see, but actually felt every flash as it appeared. In the last few months, this has been happening more and more for absolutely no reason that I can think of, the only thing that is always the same is, I am in bed. I honestly can’t think what it is about lying down, but my body seems to be trying harder and harder to make it as unpleasant as possible, the only good thing about the lights and noise is they pass quite quickly once I am up again.

It can really feel as time when you have a list of illnesses like I do that your body is on one long conspiracy trip to get you, I honestly wish I knew what I have done to it, for it to be so determined. Joking aside, I do understand those people who feel that when it comes to their health that they just can’t win. It’s not as though other than smoking, I have ever really mistreated my body, in fact I think I probably worked harder than most at staying fitter and younger than most women my age. I wasn’t bombarded like our current generation about eating well and living well, I just somehow had it all written in my brain, that I had to keep fit and I had to do everything I could to maintain what I had. In some ways, I know it had to do with not being believed that I was ill for so many years, it was kind of thrown back at me as my responsibility to cure myself. For many years I was a vegetarian, really odd in the late 70’s and early 80’s, it didn’t come just from wanting to be healthy, it had a lot to do with the fact that I wasn’t that fussed about the stuff, nor did I feel that great when I ate a lot of it. I taught myself a lot about nutrition and the right things to eat to maintain health, whilst still living what most would call a normal life, not by going all green or hippy as it was seen then, neither exactly the suitable image for a Royal Navy officers wife. Throughout most of my 20’s and all of my 30’s, I took the time to stay out of the sun, so that I didn’t damage my skin and because it made me feel ill. I spent almost my entire spare time exercising and generally keeping myself fit, none of it seemed to stop me from those terrible spells of being in pain and fatigued beyond how I was the rest of the time, no matter how much exercise I had been doing. Finding that your body has all that time been falling to pieces and all your hard work was a total waste of time as you are in reality even iller than you once thought possible, is really hard to get your head around. If anyone was going to live a long healthy life, then surely it should have been me.

I remember reading once about the man who was behind the jogging craze actually died of a heart attack whilst jogging and yes, I did laugh, but my laughter was a mix of bad taste and pure understanding. When it comes to chronic illness, it doesn’t seem to matter how fit you are, how strictly you stick to a regime of good food and fitness, if it is going to be your bad luck to have it, there is nothing you can do. Some chronic illnesses, yes, can be affected by being healthy, but the majority can’t and that is one of the things that I think too many just don’t understand. One of the constant questions that I remember being asked was “what caused it”, nothing, nothing causes any of them that I have, other than the Emphysema part of my COPD, that’s down to my smoking, I know that, but that was a calculated risk that I lost on. As the doctor said, even if I didn’t smoke, my PRMS is as likely to shut my lungs down as my Emphysema is, Any way, I digress, the point is that most people believe and treat you as though all of what is wrong with you, has to be your fault somehow and can be almost as cruel as the conditions, in the way they look at you and speak to you. Almost as bad as them, are the ones who constantly tell you about people they know who have what they believe to be the same condition, but can manage perfectly well. No matter what you say they seem to have no understanding that the two conditions although within the same family, are a million miles apart, as they say “A little learning is a dangerous thing”.

I believe firmly, that these are all the reasons why those of us who are ill, speak freely about their conditions to anyone who will listen, don’t push it down their throats, but help them to understand just what is happening to them. I heard the other day about a couple of people who were forced out of their jobs, due to their health, their conditions wouldn’t have affected their work in any way, it was just the narrow minds of their employer. I have already written about the similar attempt made by one director in the company I worked for, it doesn’t matter what the law says to some people, what matters is what they think they know and I believe it is up to every single one of us with any conditions from Asthma to Cancer, to make the path ahead for those who follow us and for ourselves, just that bit easier.


Please read my blog from 2 years ago today – 09/02/13 – A plan from the day after

I suppose we all do it, go to the Doctor and hear whatever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK……

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