A lose of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday it has become a tradition in the last few months that we have for dinner garlic bread and different flavors of chicken wings, I went and took them out of the fridge to find that instead of wings there were drumsticks, for the life of me I couldn’t work out why but it seemed logical that ASDA’s had sent a sub although I didn’t remember looking at them when they arrived, I always check subs visually. Despite that I settled that into my mind and called Adam to the kitchen to see if he wanted anything to go along with it and relayed my first lie with ease as I thought it was right. At that point I remembered that I had bought some honey parsnips for myself, my mind then changed the story, that I had intended for Adam to have the larger portion of chicken and I was having parsnips as well, lie number two. After we had eaten there was the blinding second when I remembered what the real truth was, I had bought the drumstick, no substitutes, I had never intended to eat any of them, they were all for Adam as he loves large quantities of meat. The day they arrived I was supposed to have told him that all of the two boxes if chicken along with 2 garlic baguettes where his to eat when ever he wanted and that I was having 2 baguettes and parsnips when I wanted them.

OK that was a long story about nothing on the surface, but the important bit is this. I couldn’t remember the truth or the fact attached to it, so my brain invented a possible sequence of events and fooled me, not once but several times. Each story could have been a possible truth and each time I accepted it without further question as the total and complete truth. I know the final one is right, as when I remembered it was a clear click into place. I can’t help now but wonder how many times I have done this before without the final bit, how many times I lied to myself and worse still, others. Clearly I have invented a way of dealing with the things I know longer remember and I really don’t like that, accuracy and truth are two things I have always held on to tightly. How can I be sure now of either?

I have known for a long time that I now have short term memory gaps and that to me was bad enough, loosing your ability to know what you were actually doing is something I was prepared for to a point. Recently as I have said before I have to check things more and more. I have found myself writing my blog and totally forgetting the subject by the time I go to post it on twitter and so on. I knew long before it got this bad that I would be wondering around not just physically but mentally trying to remember what next, but I wasn’t ready for this story building at all. I really don’t know how to deal with it or what the answer to it is. Short of writing down every single little thing I do and why am doing it, there is no way now of really knowing what my intentions or actions are. I find myself feeling somewhat lost, when you can’t believe what you think is fact, then lost is the only place I can be. I know it clearly hasn’t done me or anyone else any harm but the potential is worrying. My reaction like most people is to want to think about, it work it all out, but how can that truly get me anywhere, I can no longer trust what I think, I am thinking.

Bringing speech to mind

Yesterday reminded me that is a simple thing that would make most people angry can up set a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in it’s gaps, I have found more and more that when I am talking with Adam that he is jumping into finish what I am saying or I have just given up as I have no memory of what I wanted to say. Last night was a perfect example, I don’t think I managed a string of anything over 10 words without stopping. Being on my own all day I notice when my memory slips and I go off to do other things mid way through trying to write a post and so on, but I don’t talk until the evening so of course I don’t notice it until then. It is bad enough when someone else finishes your words for you but when they and you can’t actually be bothered, as the train of thought makes no sense, well that is a completely different thing. I can get through a day thinking things aren’t too bad, just to have it destroyed within half an hour of Adam being home.

Speaking is so much part of what we are that to loose so much control of it is really difficult to come to terms with. Last night I was feeling low for a lot of reasons, but yes triggered by the Twitter problem, by the time I made it to bedtime I had reached the point of wanting to give up talking all together, not for the first time. I can see how easily some would just stop and not try talking unless they had to, once you start not talking you really start to disappear. The difficult thing is that give up is the word that enters your head when it gets so hard to say the simplest of things, try talking about things that require you to remember names and places and it is hard work, hard work that leaves you wondering if it is really worth it.

When I am sat here writing it is a totally different process as I can stop every few words, read back using little to no memory, and then continue where I stopped, talking is totally different, to move forward you have to first remember what was said before, to be able to find the next word, get that word out and think of what comes next all at the same time, there is no comparison between them. From 6 months ago to today my speed of writing has slowed tremendously, it is taking me double the time it used to as I spend so much of my time rereading rather than moving on with any real flow. This is one of those scary things that I have tried not to really think about a lot. Yes I have known about my memory and speech problem for a long time, but actually admitting and think about where it will go in time, well I am sure that you will also understand why I am haven’t really wanted to dwell on it. Loosing clear speech is far more about loosing yourself, than loosing mobility or being in pain ever was or is. I seldom now cry to myself when I am in pain, or because I can’t physically do something, but when I am on my own I frequently cry simply because I don’t know how to move on from where I am, be it in writing or reading something, or simply in trying to do the simplest of things watching TV. Well think about it, even that requires recall and interaction, how can you laugh when you have trouble understanding at speed.

In the back of my mind I have known for a long time that this was happening and that it was a future problem, like everything else in my illness the future is closer than I like to admit.

Planting a Seed

I think my plan of sitting here at my PC is actually helping, I have spent the bulk of the last two evening just playing games while watching TV and my back is showing signs of improving. As I said yesterday I took some ibuprofen and it actually did help, Adam suggested what might explain it as in the pain was now at a level that it could help, where as a few days ago it was to intense to touch it, he could be right. I have waited this morning again for my normal meds to kick in and I still have pains to the ibuprofen has just been added, I have noticed before that if you can stop something hurting it heals quicker, I guess this is because you stop straining the surrounding muscles and once all relaxed, it has a chance to heal properly.

I don’t know why it has taken my so long to understand something really simple, I have for years in fact nearly all my adult life in watching anything that is medical from documentaries through to soaps and drama’s. Saturday evening wouldn’t be Saturday for me without my dose of Casualty, I’m not sure of what made me have one of those light-bulb moments but I did and I suddenly realised that I started watching them all in the vain hope that I would see something that would give a clue to what was wrong with me pre my diagnosis, the strange thing was I never did. I have though learned a great deal about other conditions, so much so that I often have a diagnosis before the Doctors in the program I am watching, not that that make me a doctor just faster than the scriptwriters. It amazes my how much can be learned by selective watching, and you can choose almost any subject these days. It used to annoy me when I would sit at work and over hear chatter about the night befores viewing and how it didn’t matter what day of the week it was, I never heard them discuss anything of value, just wallpaper TV, there is nothing wrong with a mix, but so many seem to watch nothing else. I have been often asked how I know some of the stuff I do, well the answer is simple, I choose what I watch and I learn from all of it. I wish that Sky had existed when I was a child I would then maybe have had more opportunities open to me when I left school as I might of had a chance of knowing there where jobs out there outside the ordinary.

I suppose that is why I find it an irony that I have so much knowledge about so many things and so much experience in different work areas, yet I am sat here condemned to never being able to use it fully, or to be able to earn a living from any of it. I do fully understand that not many of us who are housebound wouldn’t be able to perform full time jobs, but I really do feel that around the world there is so much knowledge that is being wasted, and so many people who could contribute to others lives but we are left idling and isolated. I am not sure what exactly we could do but I was inspired by an item I saw on TV last week when a retired teacher was via Skype helping to teach children in India, I don’t think she was paid but I can’t be sure about that. What it did make me think about was the possibilities of harnessing the skills that are not being used and a way of giving some at least, the chance of contributing and achieving, rather than just existing, it could be a win win situation. The next problem is what and how to do it? I doubt I will be the person to come up with it but here is the seed planted and waiting, maybe you can be the one to make it grow. Think about it.

The Zombie Fog

MS

My MS has delivered me today it’s favorite thing to try and cope today. It is one of those symptoms that varies hugely, ‘Brain Fog’ can be simple thin mist to a ‘pea-souper’ or as I think of it a thick custard and that custard is thick. I am having real problems keeping my brain in one place, I am flitting all over the place and typing is an interesting process, all I can say this thank God for spell check, without it I doubt you would be able to make any sense out of this at all.

There was a strange thing I caught myself doing a little while ago and I didn’t like it. On TV and in films you sometimes see people sat looking totally blank, zombied, for some reason they usually are sat their with their mouth hanging open, I was doing exactly that. Why? I can’t find a single reason for it. I don’t know how but I was staring into space and my jaw had dropped, as though the control muscles that normally hold your mouth shut had just switched off. one minute I was typing stopped to read what was on the screen and then suddenly I wasn’t doing anything, I had become that horrific image I have of people when everything has stopped, except the basics needed to maintain life. Clearly I pulled myself out of it but I am left with this fear that, that is how it starts, that it will happen for longer and longer spells until I can’t pull myself back.

I think that is my biggest fear and always has been from the day that I was told I had MS, this vision that I will be eventually a zombie that just sits there, having spasms and twitching. I expect that all of use with any type of illness that effects the brain fear that end, that is why I believe that we all have to stimulate our minds, especially when it doesn’t want to be. I may be wrong about this but I have been doing so from the point when my MS turned progressive and so far, as I hope is clear in my on line activity, I am still very much in control. Loosing more and more of myself is a scary place and I nor medicine are unfortunately unable to stop it. I accept the physical changes, as strangely they are reasonably easy to deal with, there is always a way round or a way to manage a physical problem but your brain, it is just a totally different thing. It isn’t just Self-determination, it goes further than that, we all fear that being locked inside a body that does nothing and not being able to make ourselves understood, what if it was the other way round.

You could say that would be a blessing if you didn’t actually have a mind that processed anything, didn’t know what was happening around you, or what people were saying, what they were doing to you, I agree. It is the getting there I fear, that slow loss, bit by bit, of me, until I am gone. It is that possibility that keeps me fighting to keep my brain active, of having things round me that trigger my memories. I can only hope, that I will not have that happen to me, and I can try to stay as ‘with it’ as I can. The question still remains which is worse the slow slip to being a real Zombie or the physical drop into a world were you are locked inside, either way there isn’t a choice.

Morphine control

If anyone out there is thinking about changing from Oxycontin to MST, don’t do it! Sorry but I am not myself today, I’m not sure who I am but it’s not me. Last night I went for the lower dose of 50 but the pain was too much to cope with so back to the 60 after 2 hours and 60 was the dose first thing this morning. It may sound a little nuts to you if you are not living your life on Morphine, but I am really not wanting to take one gram more than I need, as it really isn’t any way to live. This doped, not quite there, mess that is in my head makes me want as I did last night, to just go to my bed and cry, I don’t know were or why the tears want to be there, but they are so close to the surface that even my normally poor control has vanished. I suppose that’s all it is, just a case of heightening that inability to my control levels.

Morphine is a great controller of pain and there is no doubt about that, but there is a price to pay and it is not something to be swallowed without knowing and understanding the price. I know I am well addicted to it, if magically a cure appeared and my MS was gone, I would be a Morphine addict and getting off it would be hell. Morphine has been part of my life now for about 6yrs, the dose slowly going up and slowly I get more and more hooked. I am never going to be free of popping pills that change everything about my life. As long as I can manage to live with the pain and the tablets are holding it at a level that means I can operate, i.e. sit or walk, I don’t want to take anymore than that. Yes I am sure I could get rid of the pain, take a higher dose I might be able to be pain free, a really nice thought, but that would be the price, thought, would I have any or would I have the ability to act on them. I have seen the victims of Morphine, that dead eyed body that accepts without any thought what is around them, nothing there, nothing that shows any real life, I want to live as a person not a zombie.
So I will put up with some pain as a pay off to having some life, I know that it is only the first 48hrs, so judging it is wrong, but it isn’t any fun and I don’t find it funny.

The nurse arrived as expected this morning and took my blood and spent a few mins to just go over everything with me, she made it clear that she doesn’t agree with the Doctor that I should stop all the bowel meds, I have to say I am not convinced either. I simply haven’t had any control and the leaking is worse as there isn’t any proper clearing. We discussed different options but I am going to see how everything goes through the weekend then make the decision on my MST levels and how I am coping with all the changes. I found out that my Doctor is off for his summer holidays for three weeks so I really have to have to sort everything in the next 10 days, if I don’t have it right I will have to deal with the other Dr at the practice, or a locum, having to go over all of the story from the beginning, I really can do with out that.