Hello out there

Jake was round here again yesterday as over the weekend I had won another symbol that he wanted of Ebay and it had arrived. Last week it was a 16 inch china and yesterday a 20 inch one, I am so glad I am not his neighbour even though he is a first class drummer, who swore 10 yrs ago that he would never pick up a drum stick again. I think his new kit is bigger than his old one, well they do say never say never, and I didn’t believe him when he said it anyway. He stayed for about an hour again and again when he left I was tired and felt totally like giving up and going to bed, but dinner and an hour of doing little I felt a well enough to make it through the rest of the day. It is strange out people drain our energy, not the our as this is one I have heard again and again from other people. I really think it is because we try our hardest to be normal and to talk with out stutters and gaps, which takes more out or you than you might imagine.

I have for a long time now avoided speaking on the phone to much as that is even worse, at least when someone can see you if you are struggling they understand, but go silent on the phone and they then try to finish what you are saying, or move on with you then stuck with this half said thing still running around your head, but also trying to move with the new conversation they have started. That is hellishly hard! I all to often get lost and find not only that I don’t know what they are saying but I have no way of knowing what to say next. There is something really difficult in just talking to someone that I can’t see. Which considering that I was a sales person for years and sold on the phone, just shows you how mad this illness is. Here is a person who was a DJ, not just the continual music sort but also radio, and then spent years selling on the phone, that to find myself sitting with a phone to my ear, hearing but unable to get my brain to take it in and to respond is just too confusing and too difficult to deal with. Avoiding it isn’t always possible and often I actually want to talk as I did last week when Teressa called. It is a bit like I have lost the coordination required between hearing, understanding, responding and initiating, all these different parts happen, but in all the wrong order. Add in the distraction factor of having a TV on or a PC screen, and there is the perfect disaster scene, so I sit there stuttering, blanking and feeling like I am being tested beyond my capabilities, and it is just a phone call.

I suppose that is how a lot of things feel at times, like I am being constantly tested, constantly expected to be able to do what is just too much at that moment. I often feel terrible in the evenings when Adam want to talk to me about something, but I am sat there hunched forward leaning on my knees as I have some relief to my stomach discomfort, or straight back with my knuckles sticking into my spine to ensure I am upright. My mind is struggling to deal with my body and to watch a TV show and the conversation at times is the one factor too many. I want to listen to join in and to connect, he is my husband after all, but sometimes I can’t. I’m not ignoring him, I am just lost how to make sense of things, my mind can’t find the response or I am lost in his words, almost as though I only pick up every third or forth one, and I have to do the work of bringing sense to it all, I am hearing all the words as in the sound reaching my ears, but the words aren’t all reaching my brain. Through in the emotion of being lost and the fear of not being able to deal with a simple thing and the result is, I get more and more lost and answer in ways I know are stilted and not really what I as the total me would have said.

Sometimes it is a scary place to be, we all expect our brains to do what it did yesterday, to find it can’t do what it did when we were a tiny child, is scary, and there is nothing I or anyone out there can do about it. I am slowly being locked inside my own mind, by my own mind.

A test for confusion

I seem to be breathing through water today, but the strange thing is that my throat and my lungs don’t hurt at all. I know I have a chest cold that is for sure as I am clearly not well beyond normal, but all the discomfort that normally goes with it just isn’t there, so maybe when doctors say there is nothing they can do for the common cold maybe they might consider something within my cocktail, mind you morphine might just be one step to far. I realized last night as I once again piled myself in to bed at 9 pm and was drifting off, that I may just have to be a little more careful, I haven’t had a cold for years and one that is blinded by my meds could just put me in danger of it settling in my chest and getting worse, without my knowing. I had pneumonia years ago just after I had my hysterectomy, they said that was because I was too immobile, well I have little choice I sleep more than the half of the day, and sit in the same place for the rest of it. Add in that Morphine which causes shallow breathing, as I have noticed myself, and there is another thing on my list of be a little more careful. I remembered last night to take my meds a little later, which isn’t easy, when you feel crap you want to take them, waiting that extra half hour is harder than your think. I did feel just that touch better this morning so am going to push it another half hour tonight. There is no reason why I should take it when I was other than habit, I no longer start my day at 4 am and I haven’t done for years, so why work my meds to go with that time table, habit is really the only reason left, but we are all creatures of that.

As always yesterday I was struggling with concentration, it seems to be worse over the last few days but I suspect that has something to do with my cold, nothing is ever straight forward as I said a couple of days ago. We all get wooly headed with a cold add in some fog to go with it and there is instant fun. I used to always think that it was my physical problems that I would be most frustrated with, but some how I have adapted to what I can and can’t do, I even don’t really bother any longer if I drop things or stumble, even fall, but let my brain let me down and I get so mad with it that I probably make it worse. We all expect our minds to do today everything it has done every other day or our lives, add more information in to it and still pull out the old when needed. But when it won’t do those thing, when it just sits there like a useless lump of jelly, without any use other than filling the space between our ears, believe me it isn’t just annoying, it really is the worst possible thing that can happen to you. A while ago I was at a stage where not remembering actually had it’s good points as it removed some of that frustration, you can’t be frustrated when you can’t remember what it was about. This though is different, this is turning into anger at myself for being useless in my eyes, my standards for me are being attacked and I am failing. We always are our own hardest critics and I am clearly that right now. My attention span was so bad that I kept finding myself getting bored in the middle of anything, playing games for 15 mins, then writing for 10 before answering tweets for the next 15, never staying on just one thing for any real length of time and then shifting off somewhere else just because it was there, often realizing that I had a goal I was meant to be completing and once again I wasn’t doing them, sometimes I wasn’t doing anything, just sitting staring at a screen showing me where I last was. Loosing your own mind is a difficult thing to understand, no one out there knows what you could once do, it is only yourself that can do that, but with gaps appearing and disappearing, how do you map it’s progress and can you even be sure what you are mapping. I wish there was a simple set of tests that you could do free on line where they would store results and you could repeat when ever you wanted for no other reason than peace, as I would rather know my progress than guess at it.

I made yet another start to writing my book yesterday, well it was another thing I could jump in and out of, at this rate it will never be written. I have so many first couple of chapters that my folder looks as though I should have all of it there. I just don’t seem to be able to get things in the right order and keep as much of the rest of my life outside of my illness balanced with the facts I want in there. I can’t separate them as one attempt was, as I am not a medical person and I don’t really want to write just a medical book, I want to be more like my blog but with order rather than rambles, easier said than done, and more details than I have put in here to date. It is a hard balance to strike. Life is always a balance I suppose, but it is one that we don’t think consciously about at the time, we just do it and that it what I want my be book to feel like to the reader, but with facts where they belong. I managed to write for a couple of hours yesterday and I haven’t read it back yet but right now at this second I am happier than I have been with any other start. No promises but this could really be it.

Confusion from my feet

I am struggling with my arms and legs again, they are so tired that just sitting typing is taking it out on my arms, at this second the muscles feel as though I am carrying a heavy shopping bag, and the numb echos that you would get when you first put the bag down, is there every time I stop to reach for the mouse to correct one of my numerous spelling errors. I know that I am dyslexic but even I wouldn’t normally be making this number of errors, looking at them I would say most are actually typo’s as the error is normally one key away in any direction, I don’t think my figures care about it today. Probably a good way to describe it is to say it is like the recovery stage of a bad flu or Glandular fever, when the pain is gone but the muscles still haven’t returned, except in my case I still have pain.

Adam spotted the other day that I am not quite right at the minute, I still think I can cover these things up but he has been around me long enough to see right through my smile and words of I’m fine. As always it is my legs that are the worst, I really feel that something is brewing. Over the last few months every muscle from by buttocks to my toes have hurt, spasmed or gone numb, not all at the same time, but there is a concentrated activity that is just to focused for my liking. More than 50% of everything is now in my legs, by the end of the day I feel I am moving like a 90yr old, just getting to my feet is a painful and slow process, my speed of walking is more that of a shuffle and the pain each step is ridicules. One thing that doesn’t make sense to me is the pain in the soles of my feet. When I am sat still they are so painful that I now find myself sitting with my feet on their sides so that the soles don’t actually touch the floor. I can think of no reason why they should be like that, I walk so little and there is actually no connection between the amount of day time movement, to the levels of pain in them. I can be sat there with them both feeling as though they have been badly burnt, add to that now permanent edema, stretching the skin so that it is now tight and seems to be drying out, I would happily have a new pair of feet if they were available.

I think that anything is easier to handle when you know what the cause is, it is fine to say well I do know, it’s MS, but that often isn’t enough. I frequently can add to that and say well I did this or I did that and that was the trigger, but when something happens again and again and there is no common factor, it becomes annoying. Imagine you sprained your ankle and you did everything you were told, you kept it strapped up and lifted off the floor, walked as little or not at all and a week later it was worse. Would you be happy for the doctor to look at it and say well it’s sprained? No you to would want to know more, why it was getting worse, why the pain was worse, why you still couldn’t walk. Well I am the same, just to say it is MS is telling me nothing, my whole body is MS, but my whole body doesn’t feel like that. There often does still feel as though I have more questions than I have answers, just as I know is the truth when it comes to this condition for most Doctors. It’s not their fault they don’t have the answer, but they are my only target and my only hope of an answer as well. Yes I am shooting the messenger and it’s confusing.

Chaos

I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going thought my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living-room expecting to just switch my computer on and get on with my plans, I couldn’t. Adam after years of nagging had decided to surprise me by washing the white wall behind my computer desk. It was taking him longer than he thought it would, not surprising to me as I used to wash it twice a year and it was over 6yrs since I was last able to do it myself. So what upset me? Well that is simple and I think many of those reading this who have damage to their brains will totally understand. I have damage to my frontal lobes and my emotions are closer to the surface if you like, I also can’t cope when things are not where they are meant to be. Adam thought he was doing something really nice but he was succeeding in scaring the hell out of me and I couldn’t hide it.

When I entered the room the first thing I noticed were some ornaments that should be on top of a unit behind my desk were on the fireplace base surround. At that second I felt agitated and I was trying to calm myself when I started to see loads of things out of place and when my eyes eventually found him, Adam on a ladder cleaning the wall. He was where I had to be and everything was wrong. To most of you reading this it will sound really nuts, but I was scared, as with everything were it shouldn’t be meant I didn’t totally know where I was. The space that is always kept set and unmoved was in chaos. Worse still the carefully made plans were also in chaos, as I couldn’t carry them through, I couldn’t get to my PC. There was a small logical voice inside me saying it’s ok, calm down, nothing is wrong, but it was just too small.

Adam could see my distress and came down off his ladder apologising and explaining that he was trying to do something nice, as it was all meant to be done before I got up. I knew all that but my confusion and distress were over powering everything. He stayed calm and spoke to me and I slowly calmed as well, the wall still isn’t finished, as I had to complete my days plans, I had to get to my PC, it was all too much for me to not continue the plans. Once I was sat in my place I calmed down slowly, Adam was great at just letting my calm down and settle into what was happening, there were a few tears as they don’t obey any commands to stay in my eyes and off my face, but for once they didn’t last.

It is really hard to put into word that feeling when something small makes you feel as thought the world has flipped into total madness. I have never known in my adult life anything that would match it before the MS caused it, so to call it agitation, confusion and fear is about all I can say, I can’t compare it to anything else other than once I was in a small car accident, I wasn’t hurt but the shocked fear is a similar feeling. Probably why some use the phrase ‘it was a car crash situation’, I do know it is illogical to react like that but once triggered finding and holding onto logic is impossible, once it is in control it takes time to pack it back up and slot it into place again. I don’t know if you can imagine having that feeling in somewhere that should be a totally safe place to be, your own living-room.

I have written before how I really don’t like things moved and Adam knows it better than anyone else, but doing so with all the best reasons in the world, still really upset me, if he had warned me, I know his surprise would have been ruined but if I am warned I have more control, as I would have played through the worse cases possible and I would have planned my day differently. If my life isn’t the same, isn’t under-control I loose control, not being in control of my own mind is one of the scariest parts of MS, and if you as an outsider so me when I am like that you would list me as mad, completely certifiable. For that short period that is how I feel too.

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.