I woke yesterday afternoon from my nap and I couldn’t believe when I managed to stand up the pain that was right around my mid region, earlier in the day I had been hopeful that it was starting to settle, I should have known well enough that it was too good to be true. It doesn’t seem to matter how long you are ill, that hope that things might just get better never leaves you, but even a peaceful two hours sleep hadn’t managed to change anything, other than to aggravate things somehow. Because of how things have been for the last few days, we had decided between us that it was best if the shopping was delivered in the evening instead of my dealing with the shopping arriving by myself in the morning. Nothing seems to be going easily for me just now and even what should have been something to make my life easier, it made it worse. I know that it is all part of this stupid illness, but the rate that I now get wound up is ridiculous and it is always over the daftest of things, so when the doorbell eventually rang, fifteen minutes outside of the allotted slot, well I was ready to explode. Adam, of course, was being overly polite to the delivery boy saying it wasn’t a problem and not to worry about it, whereas I was demanding a good reason and had been on the verge of phoning to put in a complaint. I get so frustrated by this brain of mine, 5 years ago I might have felt that way, but I had it still under enough control that no one who didn’t know me, wouldn’t have noticed. When your brain is out of your own control to the point that you can’t even see it is happening, well afterwards, it is really embarrassing, to the point where you can’t even help feeling a bit ashamed of yourself. Adam is used to it now and he handles it with his normal calm self, but when I can look back on it the next day, well the embarrassment just grow.

Our whole evening was overshadowed by it, between the fact my mind was refusing to settle back to normal mode and the pain that had been triggered by all the bending, stretching and walking required to get everything done quickly so that our whole evening wasn’t lost, well I wasn’t in the best mood. Wednesday nights have been for a long time now our night to watch TV that we both truly enjoy, not just what is served up by the BBC, which is excellent most of the time, but well does go a bit off mid-week. Those three hours we have together every evening are special to me and I hate it if there is anything that is happening that eats into it, even if it is just a few minutes, losing half of it felt devastating. I can sit and tell myself a million times that it was just the shopping and it was just a few stupid minutes out of a lift time, but it doesn’t change a single bit of how I felt or how little control I had over the way I was acting. I used to think that when I started to loose control of my mind, that I might also have the blessing that I wouldn’t know that it was happening, why I thought that, I don’t know, maybe it was just wishful thinking. Over the last years, I have felt every second of every step along the way, knowing and feeling terrible about it but totally unable to change it. That is the bit I don’t get, how can you know you are being totally irrational or rude or any of the other things that happen, yet have no control to stop it, apologise or correct it. Brains don’t work the way I thought they did, in fact, I would go as far as to say that brains are the most frustrating part of living with PRMS, pain is nothing in comparison to losing yourself. Not being able to remember or to vocalise your thoughts and feelings are one thing, not being able to be civil or stop yourself from acting like a petulant child, well that’s scary.

Just as I know that the pain has increased and that my memory has become worse in the last few years, my lack of control of my personality, as that is how it would appear to anyone who hasn’t known me fro years, has also increased. Adam has lived through every moment of every change that has happened to me, he knows the real me, but that doesn’t make it right that he has to put up with this, especially as we both know that it along with everything else, will only get worse. Emotionally I am all over the place in the last few months, I think I have cried more than I ever did in the past and most of it for nothing, I would rather be sat in tears than getting wound up and angry, but I don’t have a choice. From the day they confirmed that my brain function was deteriorating, I knew that the future was going to be nothing like I had had it pictured in my mind. I had settled myself with the idea of being in pain and physically disabled, but I hadn’t given a second thought to losing my mind as well. I knew that it might affect my memory and concentration, but to actually change me as a person, making me short tempered and agitated over nothing, I never allowed for that at all. To date, keeping my life in a strict routine and to not bring in outside people into my life has kept things reasonably level, that’s why I wanted Adam involved in getting the settee’s sorted out and the new covers made. I didn’t want to lose it in front of strangers and I truly needed his help when it came to sorting out the money and so on, dealing with figures is something else that is getting harder and harder. When you were once totally independent, never relied on anyone for anything, it’s hard to accept that you can’t do anything, even deal with a shopping delivery on your own, just as hard as that is knowing you are putting more and more onto someone you love and they too are the one who receives all the bad stuff as well, because they are the ones who are there.

I have always said it and it just seems to get truer and truer, it isn’t us, the ones who are ill that have the hardest part to play, it is our partners. I know what is happening to me, I feel every single part of it, the seen and not seen, but I also know that I couldn’t bear watching if this was happening to Adam as we know each other that well, that neither of us can truly hide anything from the other, no matter how clever we think we are.

Please read my blog from 2 years ago today – 5/03/13 – Changing expectations

When I stopped writing yesterday I was so uncomfortable that I decided to try and sort out my bowels, I have suppositories in the house but using them by myself to date had been somewhat comical, but I felt I had no choice but to try. I am not going to paint a picture, but it is enough to say that…….