Life plus Drifting

There is snoring coming from the settee so therefore it is Saturday, lol. I sat here late last night, right through until 10 pm as I thought that sitting on the settee even with my added cushions where part of the problem with the pain in my spine, I wondered if it was possible that the harder higher seat might do less damage and allow more healing than the low soft settee, by using the past tense I know I have given away the result of that test, yet another broken straw. It seems as though I am having less and less success with my own attempts to fix things or maybe the it is just the pain getting to me a bit, but I am at more and more of a loss as to what to try next. I have again today just taken a couple of Ibuprofen as I tried them a couple of days ago and I think they helped a little. I keep trying as when I check on line the solution is to boost the meds by adding something simple, I don’t understand the chemistry behind it but it has to do with the drug combination, producing a higher pain relief, I have promised Adam that if I don’t have any significant relief by Monday, I will call the Doctor. I am you see quite sure that the pain from my pulled muscle in my back is healed, the pain I have now isn’t in the same place and is in reality the pelvic pain I have been struggling with for months now, just worse. I really expect him to say there isn’t anything he can do to help as he is so reluctant to up my meds and I am so reluctant to up them as well, but I can’t live like this for ever it is getting beyond silly.

I am not sure exactly how I am going to go about it but I have a hankering to do something different today, which with my vast array of things to do, comes down to spending most of the day playing computer games. I haven’t really played any for months so it might be some fun again. I have never been taken by the shoot-em-up games they just to be honest bore me but I do enjoy a good puzzle game, something that I have to think about and plan as I go along. I always thought that was why I enjoyed my work so much as all my days were basically spent working on big puzzles, then building software, which is another is another puzzle to be able to monitor and/or fix the situation. What wasn’t there there to keep an analytical, puzzle mad mind happy.

I have allowed my writing and twitter to take over much of my life lately and I am loving it but I think it will also do me good to take time out maybe every weekend to do something different. I suppose to be honest it has more to do with how much time I have more than anything, good days I have two to three hours to work on my book on a bad none. Everything in my life seems to be run by how my brain wants or doesn’t wants to work, so I have to accept that I have little control now over how well I manage anything on any given day. It is one of those things that has always made life with MS difficult as it is easy to make plans but impossible to know if you can actually carry them out. I am lucky with Adam on that point as he isn’t the type of person who likes to make set decisions about what is going to be done on this day or that, or even at what time, so my inability to stick to anything doesn’t bother him. I used to be the total opposite, I was totally the type of person who planned everything and got really wound up when or if it didn’t go totally to plan. I hated people being late for anything even by just a few minutes and I hated having to change anything I had planned. If someone had told me years ago that I would have learned to drift through not just one day but everyday, I would have told them they were mad, yet here I am drifting all the time and I don’t really care. I suspect that is one of the pluses of having brain damage, as it has removed that uptight to the rule side of me, which is a blessing, as otherwise I would be permanently wound up and in a state of frustration, now I just accept and get on with it. I was sure that like everything else in life, I would find a plus hiding in there somewhere.

Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.