I am so far behind this morning that I have given up any hope of catching up, I am just going to have to go at the pace that today will allow. Things started out alright and Adam, before he went to work sorted out the moving of the furniture in the living room, ready for the return of our newly covered settee’s. They had said that they would be delivered before 10:30am but I never thought that meant before 9am. Adam had been only gone for minutes when the doorbell rang in a fashion that no one could miss of that of someone wanting to make a delivery, I have always wondered why delivery people ring doorbells as though they have to wake the dead, but they do and they probably always will. Despite the argument I had with them when they phoned to say they weren’t going to be ready on time, that despite behind 6 days late, their work is perfect and both of them look wonderful. It took ages for them to be brought into the house and sorted out, they had to take extra care with them as they were really worried about them getting anything on them before I saw them, being cream, well I understood their fears and appreciated their care. It feels so good to be sat here once again seeing them almost glowing back at me across the room, something I haven’t seen for what feels like a very long time, mind you it might be me that is glowing and not them.
I know to some it will sound silly, but I have avoided a doing a couple of things due to the fact that they were out of he house being worked on. My doctor made me aware of a company who will order and pick up your prescription from the doctors surgery, have it filled and then deliver my medication to the house. Ever since I have been housebound, I have been phoning in and then supplying them with stamps to post the prescription here, then Adam does the rest for me. The system has worked reasonably well to date, but it does mean that like last week when I needed a new drug quickly, I actually had to wait three days before they were here for me to take, so this new system seems really good if it works. I spoke to Adam about it the other day and at first he was really against it, he for some reason saw it as part of his role, to be the one who went back and forward to get my prescription drugs for me and actually sounded hurt that I was even thinking about taking that job away from him. It was really quite sweet, but once I had explained that it meant that when I needed a new drug quickly that I would have it that day or at least the day after, rather than waiting for days before being able to get what I really needed straight away, plus it meant no more stamps to pay for, he came around to the idea. So now that I have a suite for them to sit on, I am going to contact the company to arrange for their rep to visit me to get things set up.
I have also been holding off from seeing the MS nurse, the doctor again suggested that it might be a good idea to have them come here to discuss what can and can’t be done to help with my bowels issues. From which I took that he was really saying that other than giving me different drugs until my bowels decided to release their contents, he didn’t have the slightest idea what else to do either. I am not sure what help they can offer, but I can’t see it doing any harm, after all they are there to help, it is the whole point in them being employed by the NHS. But I really do fear that it will be exactly as it has been in the past, just a lot of talk that leads nowhere. It’s odd when I think back to when I was first diagnosed and how hopeful and eager I was to try everything they could offer me, be it painful or not, these days there is nothing more than grudging acceptance that they have to meddle in my life, in the hope that one of them, just one, might actually have an answer to just one of my questions or better still, a solution for one of my problems.
I found myself lying awake last night in bed, it was the middle of the night and there was no reason what so ever for me to be awake, far less lying there with a million things tossing around in my head. I just wish now I could remember even one of them, but what I remember was simply my thoughts were racing from one thing to another over the entire length of my life. It’s daft how our minds can be on one thing one second and with no connection what so ever, you are years away with totally different people and voices all echoing and sounding like lost sheep in a storm. What is the point in memories when they hide from us and when they do eventually choose to be known, they make a fuss and vanish again, leaving you lost with just a faint knowledge that they were ever there. Somewhere in that muddle though was the reason why I was awake and it could at least have had the common decency in letting me know so, otherwise why insist in destroying a perfectly good nights sleep? I am finding more and more that my mind is filled with the oddest of memories, things that I thought were long settled and long dealt with, what is the point in a memory of my throwing sand into the eyes of a horrid little boy at nursery school, when I don’t remember what he looked like, or even his name, far less what he did to deserve to be remembered as horrid. Or in going over for what feels like the millionths time the events in a nightclub when I was a DJ, or a discussion in the boardroom about future budgets, they aren’t the sort of memory that has a true value in themselves, but they keep appearing, never changing, never finding more meaning or even a relevance to my life now. I thought that the things we would hold onto, were the good thoughts, feelings and events that made our lives happy, not odd events that weren’t even important at the time, far less now.
When my father’s father died, I remember not long before he went that he started to hallucinate and would ask us to straighten the pictures on the wall, or wind the grandfather clock, all things clearly not there in his hospital room. At the time although I was young, I thought that the fact all he could focus on was his working life, that that meant he didn’t care for or love any of us, now I am beginning to understand, what goes on in our minds as they start to slip, has nothing to do with anything. Our unconscious thoughts are just ramblings, like lightning flashes they appear, vanish and disappear to be simply replaced by another, just as pointless, just as banal and just as much a waste of time as the one before. They are demanding and nothing will shut them up until they are ready to be silent, try as you might, you can’t even change them or move them along to more happy ones. I can now lie with ease for a couple of hours, lost in a train of thoughts and totally unable to name more than one, I guess I am beginning to understand just how pointless it is to try and make happy memories, as our minds will only hold onto what it wants, not what we want, we can’t make memories, they are just what they are. Spend your life working and should it be that surprising that our memories circle around the work that we did, as we spent more time there than any other place in our lives. I just wish that these mad lesions that are eating my brain could learn to eat away at those things that no longer matter to anyone and tweak the rest to be just the happy ones.
Please read my blog from 2 years ago today – 24/02/13 – New or nothing
One of the biggest problems I have had over the years of being ill is knowing exactly what is my MS, one of my many other conditions, age or a bug. I have always felt that it is all too easy to write everything off as my MS as so many doctors do. Until the last couple of years……..