Are you living

We have started the new medication system. Right now there are two medical pots sitting on the counter in the kitchen, one holding my morning meds the other my lunchtime ones. I honestly think this is a system that is going to work for both of us as Adam is always in such a rush in the morning. He really isn’t the sort of person who would have taken to the other option, to get up ten minutes earlier. The other good thing is that I will actually get my lunchtimes ones, I am so bad about taking them since I went on to the slow release morphine, as I kind of cope without them. It has become one of those habits that if I took them 5 times a week, I was doing well. I have always worked on the theory that if I can manage, then it has to be better to do so than keep throwing meds down my throat that don’t have a dramatic effect. All the way through my life with chronic illness, even pre-diagnosis, I have tested the drugs I have been prescribed. Even those that I have been on for a long time as you never know when something has stopped working, or your health has outgrown it capabilities. I have always known that it’s possible that I would have less pain in the afternoon if I did take them, but as I said I normally cope. It will be interesting to see if I honestly notice a change by taking them every day without fail.

It is far to easy to fall into habits, some of them formed by the rest of our life, like being too busy doing something else. I know for example that not taking my lunchtime meds started when I was in my mind just too busy to waste time fiddling about with medications. Once that break was formed, getting my memory to accept that I had to take them, has been a real struggle. I don’t remember the last time that I took them every day of the week and no matter how I tried, I couldn’t get it into my routine. It is one of the few danger of relying on routine because not taking them was established and even over a year later, I am still fighting it. Routine fixes nothing, unless everything in it is good, it’s just as easy for it to make the bad part of your life routine too. We all have bad habits when it comes to what we are doing to protect our health and to make ourselves feel better. Food has to be one the biggest one for me and that is clearly outlined over the last six months. Even now, when I know what I am doing wrong and what is needed to fix it, I am still fighting against what I personally prefer. I just can’t get past that all my life I have liked only two sorts of food, the ultra fancy and expensive and the ultra healthy. Since the expensive hit the floor when I no longer had the income, I switched to the healthy, but as the doctor said, it’s just too healthy. Last shopping day, I chose to buy some crisps, not healthy, except it wasn’t until they arrived that I realised just what I had bought. Not nice greasy potato crisps, but oven baked vegetable crisps. Ultra-thin slices of Beetroot, Parsnip and sweet potatoes, baked until crisp, low fat, low sugar and low sodium. I just can’t help myself.

Without knowing it, those of us with chronically bad health will all have things that are actually hurting us in our daily lives. It is actually easy to see how it happens as chronic illness doesn’t normally hit until you are past the age of 25-30 and many don’t appear until our 50’s. That is also past the point where our life habits have been formed. I am not saying that doesn’t mean we can’t change, but once you as a person are formed, it really is harder to change. Add in the illness and all it brings into our lives, the whole idea of having to change everything we do as well, is just too much. The worse our health gets, the harder facing any other changes gets too. I am still amazed that I managed to switch the majority of my nicotine habit over to an e-cig despite having smoked around and sometimes over 60 a day. I honestly can’t ditch the final 10-15 I now smoke, because I really enjoy them & life holds little enough of that.

It is easy for doctors to dish out medication and advice. But once you have a range of conditions, their advice might be right for one, but wrong for another. PRMS is a condition that doesn’t respond well to any stress of any type. It is because of that, that routine works so well for it. When your life is regimented and never changes, means there are no surprises and nothing to cause stress. Even the smallest change can cause huge issues for me and as time is going on that is getting clearer and clearer. Emotionally, I react badly to anything I don’t expect or don’t like. The damage that is happening to my brain means that I can be triggered into either a panic or complete meltdown, at the drop of a hat. Life has to be held at a calm and steady state, Every time I see a doctor, they leave me with a list of changes that they believe will make my life better, what they don’t see is the damage that it will really do to me in other ways. I know and I think Adam does too, that I am just not capable any longer of changing my life as I don’t have the energy.

There is a point where you don’t actually care anymore. I know that sounds bad, but it isn’t. It just means I have come to the point where I am resigned to the fact that doctors can do nothing for me, other than tinker around the edges. That tinkering doesn’t fix anything and simply causes me stress, stress I don’t need. Those bad habits that are as much part of me as my right arm is, aren’t ever going to be changed enough to make the difference they say they will. I am dying, I know that and all they are doing is playing with my longevity, were as I want them to improve the quality. If they could take away my pain even if the cost was to lose two or three years off the longevity, well I know which I would prefer. All too often they seem to ignore that aspect all together. They seem to see their job as being to make us all live for as long as possible, but if you have to live as someone else, are you living at all.

Read my blog from 2 years ago today – 16/07/13 – Am I ill enough?

The things in everyday life that you miss when the world changes, is amazing, up went the temperature and away went my porridge! This morning is refreshingly cool and I am making the most of it as I know we are back to the oven tomorrow, yes I had porridge, smaller than I would usually have as I still don’t really have an apatite but even in that position I still enjoyed every mouthful that I ate and guilty about…..

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