I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as there is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way, family arrive turn your world upside down and then vanish again, mind you that might be my view simply because I have never lived anywhere my family have, so it is always a concentrated visit, rather than short visit every few weeks.

I still haven’t actually recovered from Sunday, last night I hurried off to bed at 8 so exhausted that I don’t remember actually getting into bed, far less going to sleep, going straight through to this morning without seeing the time once. This morning I actually do feel better for it, I know it is early to really draw conclusions but the shift in my evening meds so far is actually achieving what I wanted from it, good pain control through to and past the time I get up. Both yesterday morning and today I not only made it to the alarm, but I felt better in the morning like I used to a few months ago before my meds stopped getting me through, I really am hopeful that I have found the answer to some of the issues that have appeared recently. Living with a progressive illness is a constant readjustment of everything, nothing stays settled and under control for long and it is always hard to not only get the new balance required but for some reason to even admit even to yourself that things have changed. I had become somewhat slapdash over my meds, just taking the main ones and playing around with the rest, which is one of the reasons that I thought I was developing a chest infection, I hadn’t been taking my inhaler as it is prescribed. My lungs were once again filling up with phlegm, now I have that on back in order, well I have stopped coughing and the pain has settled again.

When you have lived as many years as I have, taking drugs and trying hard to do what is right for your health, well there are always going to be times when you get it wrong and things fall apart, mainly when things are progressing. It doesn’t matter how long you have been ill, or how ill you are, we all think we know what is best for us. Often we are right, but just as often we get it wrong, sometimes big style. This wasn’t a big one but I was wrong to fight what I knew was happening, I knew I needed more painkillers and I knew that I had to sort out timings and so on, but it is just like knowing that you need to loose a few pounds or that your hair needs trimmed, you put them off as there is always something better or more important to be done. On top of that, well there is a bigger force telling you to ignore it all, the one that doesn’t want to accept that you are getting more ill by the day, when all you want is the same thing everyone wants, to be well. Yes, I know that will never happen, but I am human and as a human, I want to be well and I want to be living my life just as I did before.

Health is a monster that once out of control pulls you down and down, but what it can’t pull down is your spirit, well not if you don’t let it, I am still inside this mess the same person I always was, but I am here less and less. It has stolen half the hours in every day for a start, but outside of that, every time I am locked in pain, or I feel too tired or too ill to get on with life, well I fade. I now live in brief windows, a few hours here and there I am myself, still wanting everything I ever wanted, but I have learned not to try and do them or get them, because when I do, well it flattens me again. I can sit here like now feeling like I could stand up and set too on the house, clean everything and even do something mad like get dressed, I feel like I can, but the truth is I wouldn’t get far, so I enjoy the feeling of being me while it lasts. When everything gallops forward and I lose all feeling of having any control of my progression, well that is when I find myself fading the most. It is hard to explain but I suppose we all believe that we control our own bodies, that it is us who decides how much we do each day, how many hours we sleep and what we eat, but illness takes over all those things and more, it is that control more than anything that tells you just how ill you are and just how much of you that still exists.

The changes in my meds over the last couple of weeks, first the increase of my Morphine and now the adjusting of the time I take them, well they all seem to have returned some more control to me. You could argue that it isn’t me that has control at all, it is the drugs, I can see that argument but to be honest I don’t care which it is, all I care about is feeling like I have enough life in me to live, not just exist, something I have been doing for a while now. Maybe one day I will learn my lesson, I will learn to recognise what is happening and just accept that I need more drugs, but strangely I doubt that will be anytime soon.


Please read my blog from 2 years ago today – 06/08/12 – Excercise or not?

I have noticed something in the last few weeks that I am hoping someone reading this might be able to say right or wrong to my conclusions. I expect that the answer will also come from someone who doesn’t have MS as I think once again it may be a universal symptom of those dealing with Chronic illness. As my mobility has slowly gone I have had more and more edema in my legs, part…..