There was a comment on Friday’s blog, that highlighted part of a subject that I have often thought about. I say part, as it is actually also part of a much bigger picture of our lives. It doesn’t take a genius to spot that there are a lot of isolated and lonely people who have a chronic illness. Our health often locks us in our homes, stop us working and slowly all of it destroys the majority of friendships we ever had. I have in the past written a couple of blogs as to why I believe our friends stop calling and slowly vanish totally from our lives. Of course, I just searched for them, and couldn’t find them, but I know they are there, somewhere. Anyway, I am almost certain, that I only very briefly touched on the one in yesterday’s comment, “We don’t have anything to say”. As odd as it may seem, as I can sit here and write forever, I actually rarely have anything to say, to anyone these days. The more isolated you become, the less there is to talk about, outside of what’s on TV, or your past and both those subjects are extremely limited, especially with people who know you well.

“We don’t have anything to say”, is actually a very simplified way of bottling the truth. If I think back to my life 20 years ago, I know without a doubt that when I was out socially, what I talked about was mainly work, shared acquaintances, anything I had done of interest outside of that and our shared history. I had two groups of friends, those I knew through my current job, and those who I met through my past one, but it didn’t matter, our conversations usually still centered around those few subject. Well, unless something amazing had happened in the news. If for some odd reason, one of them decided to pick up the phone and call me right now, after I had updated them on my health as it is now, I would have nothing to say. Why? Well, it’s simple.

a) I no longer work.
b) I go nowhere and do nothing.
c) I have no updates to share with on other friends, as I have none.
d) I have no gossip to share.
e) I have no reliable memories

Would they call me again? Probably not, especially if you add in that the phone confuses me, and that would have caused me to stuttered my way through what little I had to say, I doubt I would have said nothing to inspire them to call again. Even after 9 years of not having spoken to them, I would still have nothing to say. Is it really that surprising, they don’t keep calling?

In the past, when I have written about losing our old friends, unlike most people, I have never held to the theory that they couldn’t stand watching us going down hill. I still don’t, but our lack of ability to interact in the way they expect, without a doubt, plays a big role in our isolation. Over time, we just become that person who pops into their conversation occasionally, and a few may wonder how we are now. We have become like so many other people we once knew, just infrequent memories. Life moved on and we, well we were left behind.

I for one can say in total honesty, that conversation even with the only friend who I am still in contact with, is hard. He, though, is a total angle as I know without a doubt, that before he calls me each week, he makes a list of things to talk about, before dialing my number. We have been friends now for over 25 years, and he is the closest thing I have to family, outside of Adams. Jake found himself in the position about 8 years ago, of having to be the sole carer for his father. Over the couple of years, he spent looking after him, he learned how to approach a conversation with someone without a dynamic life. It took me a while to spot it, but once I did, I found myself being able to tick off the points where his preparation came into use. When I go silent or start to freeze up badly, he always jumps in taking the conversation back into his control. He often has newspaper articles there by his side, so that he can read sections, or tell me the gist of the story. He tells me everything about his life, who he works with, what they do and say. He saves up silly stories to share with me. Tells me what he’s been cooking and allows me to respond, even when that means waiting for it to eventually come out of my mouth. He never gets upset if I can’t remember things we once shared, nor offended if I tell him I have to go, I can’t cope any longer. He’s a rare gem and there are few of them around. I’ve learned from him, but it’s too late. If I had done the same years ago, then maybe, just maybe, I might have kept one or two of my other friends. It doesn’t take that much work in preparing to talk. To have a few notes, prompts for stories to talk about, just being ready to be a friend, or, just tell them the truth, tell them just what it’s like to be you and how to help make a conversation work, for both of you.

For the average person, holding a virtually one-sided conversation is hard work. Adam too has learned that that is just the way it often has to be. He knows when I go silent, or appear to not be following what he is saying, that I am, I’m just not up to responding as most people would. I don’t need anyone to tell me that talking with me, is hard work, too much hard work for most people. Long before I was housebound, I had already lost most of my friends. They too found it hard work, even when they still saw me around, the fact I had nothing to say, meant they either avoided me, or spoke for a few minutes, then found an excuse to go. If there is one truth about today’s world, it is that people expect their entertainment and recreational life to be easy and to be fun. That is something that as our health progresses, we are without a doubt the total opposite of. We, are hard work, not just to talk to, but to just be around. Is it really such a surprise, that our friends are either few and far between, or just not there any longer, at all.


Please read my blog from 2 years ago today – 12/03/2014 – Don’t look

Often I am set off on my daily post by a comment that appeared on twitter in response to one of my tweets, but I had to totally love one, out of complete understanding that I read this morning. I had posted a picture on Facebook and put out a tweet something along the lines of “how nice it is to have the entire bed to yourself”, the response came from another who suffers with chronic pain, “especially when parts of your body choose to sleep in different directions”. I immediately saw myself lying in bed, yes on my back but with both my left arm and leg stretched across…….





A Muddle of Syllables

Last night I asked Adam a question, one that I got a one word answer to but I was a little surprised when he didn’t ask why I was asking. I simply asked if he had noticed that I have been asking him more than normal to repeat himself, his answer was no. Clearly there was a reason for my question and the reason is an odd one, but I have noticed in the last few weeks that I have been questioning what he has been saying to me. At first I was putting it down to him mumbling, something we are all guilty of doing. Then I was blaming myself for not listening to him. Then that I wasn’t concentrating on what he was saying and I was being detracted by something on my PC or the TV, but I have always been able to do both without any trouble. Yesterday I realised what was happening when he was here at lunchtime, I didn’t’ ask him to repeat as I haven’t done many times recently, when I haven’t know what he was saying I have been covering it over by making a good guess as to what he was saying, based on what he had been talking about before I lost it all. If I have got it wrong I just say sorry and ask him to repeat as I haven’t quite understood what he meant.

What is happening isn’t just with him but also with the TV at times, I seem to be somehow not hearing words, just parts of them, my brain at times doesn’t seem to be translating the sounds into words, it is almost as though I hear a string of syllables and I’m not processing the right sections that belong together actually together, it sounds as though they are speaking a foreign language. I had noticed it when Adam suddenly talked to me out of the blue and at first that clearly could have been concentration, then I found it happening on TV programs when I was sat here at my PC, suddenly someone on the TV would again sound like they were talking a language I didn’t know, stopping me and making me look to the TV, to find they were indeed speaking English. It isn’t all the time and it might not happen for several days, then suddenly I am lost again.

It is as though my brains just stops processing words, just for a few seconds and then it snaps back, not always when I ask it to, but with in seconds. I am never spend any day without the TV on as well as my PC and the most of the time I can totally understand the TV and like now be typing, then suddenly the TV start sending out foreign words in the middle of an English program. I am not over worried about it, but it’s just a bit odd, to say the least. I suppose it has to go onto my list of things to watch out for and to see what happens as time goes on. It’s bad enough my speech being in a muddled mess without the voices around me playing the same stupid trick, mind you conversations could become even stranger than they are now.

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”.

I am still in here

Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring the tears down step by step until there were just a tiny speck now and then. It was the strangest experience as nothing had been said or happened immediately before I went into the bedroom, Adam and I had talked earlier in the evening about Teressa being here and what we had talked about, but from there until bedtime I hadn’t felt that way at all. I can’t even think of anytime in the past either where anything like this had happened, it was as though I had been waiting until I was alone to let it out, but I have no memory of even thinking it until it happened. I lay there for a while, thinking and feeling still that pain with which my mind was screaming, as I write this I can feel it again and there are tears at the edges, as Adam is asleep on the settee I am holding them back as there is no purpose in letting them go and disturbing him.

I can only think that yesterday during the day I was still feeling the joy of the time Teressa and I had spent together, when talking with Adam I remembered how bad I had been at one thing, I had noticed how far my ability to talk and control a conversation had changed. It is Adam that I really talk with and he is all too aware of the way my mind blanks and the muddle I can get into when my thoughts get split and either totally or partially lost. Spending a day with Teressa who hasn’t seen me for a couple of years had shown me the change starkly and I knew she saw it too. The person that is there for others to see has really changed in that time, even in the last year I have had to admit to myself there is totally no way that I could now hold down a job, unless they were the most patient and irresponsible company on the planet, who wanted stats but didn’t care if they were right or wrong. So much of my now feels locked off, as though I know it is there but even I can’t bring it to the forefront and make it work. I know much more has changed too and that I am loosing more than I can reawaken and yes I am lost somewhere inside. Maybe that was what was screaming last night, or maybe it was me actually taking the next step of totally admitting, not just saying or writing the words, but accepting it in my heart that I am disappearing in many ways that are hard to explain.

I can put a quiet smile on my face and nod to myself saying it is all alright, I am still coping and I am still able to do much, but as true as that is, there is a huge bit missing. There is a huge step from knowing, saying, writing something to truly believing and accepting. I want to cry now and I have wanted to all morning as I am hurting, hurting not because of a spasm or any other physical pain my MS throws at me, I am hurting because I am just a little lost as to what happens now and how long will it take. My silent screams of last night are still echoing through me and when pushed away for a few minutes, wait, until there is a tiny gap to echo again. I have the deep desire to go back to my bed and just stay there for awhile, hiding from everyone including myself. It feels as though it would be somehow easier to manage but that isn’t managing that’s running away.

I know myself well enough still, to know this feeling will pass and I will move on, compensate and adjust, but for today I feel bad, bad about a loss I can do nothing about. Giving you the words that can open this feeling to all isn’t something I am finding easy, I know I am circling it and touch some edges but those edges are possibly too raw to explain. How can I describe something that doesn’t make much sense to me other than to say I am still me, just not the one that can keep up with you.

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.