I have to laugh to myself when I was setting up the final piece to my daily blog, the link to my post from two years ago. Yes, I do do that first, it might seem odd, but if I don’t I normally forget to do it at all and then have to go back at whatever point I notice it and fix it, if I notice it at all. The paragraph I read was about the problems I had with a new keyboard I have purchased, the very keyboard I am using right now and I am about to replace, but for a totally different reason. In just two years, I have managed to wear the paint of several keys, which if the words are flowing easily isn’t a problem as I touch type, but if I stop because I have to fix something or I am having a bad day, I need my keyboard to be perfect. It is bad enough to be sat here staring at my keyboard in total disbelief as I have lost a letter and can’t remember where it is when the letter is clearly there to see. But when you find yourself searching and searching to only suddenly realise it has to be on of the blank ones, but which one, is more than annoying. I even admit to the odd word that I wouldn’t type hitting the air. There is nothing worse than sitting looking at something that you know has to be there and being for no reason other than your mad brain, being totally unable to see it. Actually there is, I have this total fear that one day I am going to sit down here and find that I can no longer touch type at all. I totally love this invisible connection between my mind and fingertips, to loose it would be total hell. If I can’t see what is in front of me, what chance would I have in ever managing to type a single sentence far less an entire post? I know there are people out there who have written entire novels with just two fingers, but it would be the frustration levels that would get to me. That and the pain of losing another instinctive ability, I have lost enough of them.
Silently, typing is a skill that I now put higher than many others, it is one of those things that I hold onto for my future. I have this fear of not being able to get anything out of my brain as spoken words. I have enough problems now when I am just talking to those who know me and can fill in the blanks. The idea of being stuck unable to stutter my way past all those blanks and never finishing another sentence myself is one of my personal hells. Being able to touch type might one day be my only communication and as I already know people complete my spoken words if I can’t type quickly, well they would finish my written words too. I never thought about not being able to talk until that time I land up unable to coordinate my swallowing, breathing and talking, it shocked me how quickly I just couldn’t communicate what I wanted or needed. But more than that it started me thinking about all the things that nerves are required for and how easily we can find ourselves cut off from everything. All it takes is a flare and bang, you’re stuck in a totally different body, one that doesn’t do what it did the day before. I don’t know which is harder, having a dramatic flare that suddenly destroys you, or a long slow progression. Both have their issues and both have their good points as well, if something that is totally negative can be good.
In some ways I think a flare are my preferred option, it gives you a few days notice that something is wrong then bang it hit’s its peak. Like when I lost my left arm, I had a clear weakness in it for a couple of days, then I woke up to find it was dead and useless. It may have taken months for it to come back to the level it’s at today, still weak but working. A flare gives you a fighting chance, it may steal things in seconds, but it also lets you have part of them back, never the full function but part at least. Progression does what it says on the tin, it hits and it keeps hitting, again and again, slowly destroying whatever it’s focused on. It is by far the cruelest of the two as you know what it’s doing and that there is no way of stopping it, but because it’s so slow you keep reaching out in the hope that someone somewhere can stop it, make it change direction or beat it at its game. Every day of my progression of what ver is happening to me with my bowels and diaphragm are documented here. Every week there has been changes and every month it has grown worse. I dread what the next three years has waiting for me, what the progression will produce next and how or what it will go after next.
The total failure of the peppermint oil, one of the things that the consultant had high hopes for has kind of knocked some of the hope that he managed to instill in me. Despite taking the psyllium every day, nothing has happened yet without any other intervention, but I do still have some hope for that one. The pain has remained totally unchanged, if anything, I would say it is slightly worse as the speed it hits after my waking in the morning has clearly increased. I can’t even make it to standing up now, without the tightening beginning. Progress is still happening and still in totally the wrong direction. I know that none of the things that he spoke of is fast acting and I am only in week two of trying this stuff, but so far it is a total and dramatic fail.
Yesterday, I made it through to just midday when I had no other choice but to crawl my way to bed. I felt so sick and so dizzy and unable to do anything, that I had no option. I set my alarm for two hours, not expecting to sleep that long, but as a just in case, I’m glad I did. Adam was out last night so I took the opportunity to go to my bed early, not long after 8pm and sleep held onto me right through until this morning. It’s just gone 10am, I’m tired and in pain, progression or this trial, I can’t be sure, but what I do know is it’s taking it out of me in almost every way I can think of.
Read my blog from 2 years ago today – 31/05/13 – Differences change
I am having fun this morning with a new keyboard, I had to buy one as the space bar was either sticking or not working at all. As you can imagine there is no worse key to have such a problem with, it was totally my own fault that I had killed the old one, it was a victim of my health. Living in the same place day in day out, including eating my meals sat……