Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other Sci-fi is totally clear in most things she does. The date is set for the 24th of January and I realised a couple of days ago I now have a date to open the bottle of Champagne that I have had in my fridge for the last two years, I will at least be able to raise a glass to her and John on their day.

Compared to this point last week I feel so different, I knew that I would settle again but I didn’t realise just how much I had been carrying around inside myself, partially hidden even from myself. Although I knew all that spilled out I had engineered everything so that I didn’t have to face it and if Teressa hadn’t visited I would still have it all nicely confined. I actually think that my first visit to the hospital was when I scratched at the surface but that visit didn’t last that long and I shuffled myself back into hiding. I think letting it all out is why I found my return visit easier and that I managed I think to get the details across to the doctor in a more complete manor. Yesterday evening I suddenly realised that my speech patterns now are almost a shorthand version of talking, I skip words and say what is enough needed to be understood, if it isn’t then I get into a spin and try again but saying the same words as if by repeating them, they will make them understood, pointless but it’s what I am doing for some reason. The strange thing is I don’t actually remember when I went from the odd stutter and slur to talking in riddles with a mess of sound within it. I know see why Adam gets annoyed with me at times, as he is having to decipher all of it, making it less of a conversation as there is only one person doing the work, I am taking the easy way out and just not really talking. Actually I am being a bit hard on myself, as that sounds as though I am doing it by choice and choice doesn’t come into it, I don’t have any.

I seem to be swaying back and forward between feeling great, elated as there is this huge weight off of me and feeling like I could sleep for ever and there is no where on earth that I would rather be than bed. I am somewhat drained I know that, but I have a few weeks ahead of me to recharge before the next thing happening for me to get through. I don’t have a date for the Endoscopy, but I expect it will be a couple of weeks away. I have recieved the appointment from the Breast Screening Clinic, this does look as though it is going to be one huge problem. They hold the screening right in the middle of Glasgow and they make a point of saying that if you use a wheelchair or have mobility problem to let them know. I know the building they use in Nelson Mandela Place and it is not disabled friendly in any way. This is going to be what I would call interesting. One of the first entry on the to do list as I have to phone them on Monday.

Having spent 5yrs here in my flat seeing no one and not having to deal with people I feel some how under attack by the NHS, on top of the two appointments I have mentioned already, I am also waiting for an appointment for the pain clinic, a visit from the OT and to be honest, it is all really too much all at one time. I know all of it is for my own good and that I wouldn’t have even mentioned all of this to anyone as even important in anyway a few years ago, now it just feels really daunting. I suppose these feelings are all part of my slide down the slope, but like screaming “I am in here”, this makes me want to scream “leave me alone”.

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.

Challenging Speech

It is strange how much you get used to having you days to yourself, for the last few years I have spent the majority of every day and every year on my own, as Adam clearly has to work, when he is on holiday as he is now it all seems a little strange, his holiday only started on Friday and this is only Tuesday but I have had to check that twice today as with him being here it feels like a weekend, it is just a little odd. Another one of those things were logic says one thing and another part of my brain says another, but not in a scary way this time, just a normal reaction that anyone would have.

The living-room is now back to normal and it looks so much better as I knew it would. It is really hard to explain to others the things that lesions on your brain does to your thought processes especially when there is the perfect logic telling you the world is fine but the fight and flight side is shouting back everything is wrong and you should be terrified. There are loads of occasions where the my two sides of my mind argue over what is happening, that is were a lot of frustration comes from especially when trying to talk. I expect that a lot of people who develop speech problems find it difficult as part of me knows exactly what I want to say, but as I start to talk one of three things happen, it all comes out fine, I forget within the first few words what the next word is, or all words that I had lined up to say, or thirdly I start to stutter and get frustrated trying to get the words out.

For my entire Adult life until just 9yrs ago my speech, was vital to my income, I was luck as a child to have had vocabulary lessons, so I spoke clearly and with a little accent, any sign of an Aberdonian twang had long gone. In my first marriage not only was I married to an English man but I had lived for many 7yrs in England and when finally back in Scotland due to living on a Navy estate, I mainly still mixed with English people. The result of all of this was that most Scottish people would ask what part of England I was from. My first while waiting for my divorce was running a hotel lounge bar, I then went into sales, before returning to being a DJ not just in pubs and clubs but for a while on the Radio. When I chose to return to a more mainstream job I went into telly sales at first, then into operations management. All the way I had clear speech and a fast mind that was ready to answer or fill in any space required. Taking all this into account to suddenly find myself unable to bring two words together, well I think you can guess how I felt.

Strangers treated me as an idiot, they get quickly frustrated with me and that frustrates me more, making the whole thing worse. Speech is like many other things in life you take it for granted until the problems start. Adam being the person that I speak most to used to it and on the whole he is patient and doesn’t try to finish my sentence for me, occasionally he will. I don’t mind normally but if he is in a mood and start doing it to everything I say I get wound up and tell him so. Believe me I know how hard it is to resist completing others sentences, but when it is done to you 10, 20 times a day you land up being hurt in ways other wouldn’t expect. I know I slowly at work spoke less and less everything was done by email as it was the only way I could be sure that what I wanted to say was actually listened to other than completed incorrectly by another.

Stuttering is one thing, it’s annoying and difficult but worse still is when your mind goes completely blank, there is nothing there to follow the few words you have said. Every single one of you will have had that happen to you on occasion it is normal, our brains seem to find it funny to be able to completely embarrass us, mine has become not just embarrassing but scary, I don’t just do it every now and then, well unless you mean 10 or 15 times a day as now and then. I can’t imagine how it would be if I was to be with another person all the time everyday, I suppose it would multiplied up, but to find continually that your mind has suddenly gone blank and on occasion not just to the sentence you were about to say, but to be totally blank, no knowledge of what the conversion was about or why you were even talking. That is frightening. It is almost as though you brain went to sleep for a second and waking up, wiped it clear. To find yourself in that position repeatedly isn’t funny.

Whether we like it, mean it, or do it subconsciously we judge people greatly on how they talk. You can see a stunningly beautiful or handsome person, but if they open their mouths and sound anything other than what you expected your entire opinion will change at that instant. Having all my life received a certain reaction to find that it has change 100% can be hard. The cruelest thing about any disability is often not the disability itself but they way you are treated. Psychological pain is fixed with a pill and is harder to swallow than one as well.