It shouldn’t be this way

My brain left the building yesterday, without a bye nor leave, just gone. There I was, just sat here staring at the contents of the bookshelves beside me, all devoid of books, clearly, as I arranged them. No books, just crystal. Brain or not, I sit often just enjoying each and every piece, such beauty has to be enjoyed. But yesterday, I wasn’t seeing any of it. I was trying not to remember what I was going to do next, just trying to remember what I was doing at all. I often feel blank, but this was so stark that I was sat there feeling numb and not even hearing my constant companion the TV. I missed the bulk of the program I had been waiting to watch, at least there was one positive, it was recorded. Ask anyone with MS or Fibro, brain freeze just like its cousin the fog can be somewhat disturbing, there is something unearthly about finding your entire brain has left you, deserted and alone. In fact, it is worse than alone, because you can’t even find yourself in there. It’s so odd, a bit like you have been severed from existence and there is nothing, other than that, a vast nothing. On the good side, they don’t last long, but when you do come out of them, finding where you are and what is happening around you can take a little time. It’s in some ways like falling asleep and waking again, as time has passed, but nothing, not even a thought, has actually happened, yet still you know it has.

That is the very reason that I developed a spreadsheet to keep me from going wrong and from feeling too lost. I know, it might sound somewhat extreme, living your life by a spreadsheet, but it works and gives me the reassurance I often need. Years ago, it was just a routine, things done at the same time every day, but as my memory was failing me more and more, I did exactly what an operations manager does, I built a work system. A spreadsheet that contained the process that took me from getting up, right through to Adam coming home and being here to keep me right. At first, it had timings, goals, and daily plans. Everything laid out, step-by-step so that it could be checked, double checked and ticked off when completed correctly. It was rigid, disciplined and accurate, but most of all it made me feel secure. I was living my life, just as I had worked. I know it wouldn’t work for most people, to be honest, it only worked for me for a few years, before my health made me rethink it.

From that point on, every few months, I had to keep tweaking it, adjusting it here and there, allowing for my diminishing brain and energy. Reducing over and over everything that was on it and everything that I was able to once do with ease, into exactly the same amount of time, but it kept growing less and less. That was and is an incredibly painful process and the downfall of using a spreadsheet to run your life. It was the constant proof of what I knew was happening, but there it was in solid form in front of me, I was losing the capability to do at all, what just a short while ago, I could do with ease. Every time I rebuilt it, I allowed time to just play a game, do nothing of importance, enough time to relax, after all I was no longer working. When eventually, I had to remove the timings and bring it down to nothing more than a short list of just what had to be done, when I was up to it and that hurt even more. I have lived to that short list now for over a year and so far, I can still do it, but that time I once had just to sit and play games is almost gone again.

I know that my health is progressively getting worse, but in reality, I do very little, it just seems to be taking more and more time just to do it. Yesterday, I opened one of my spreadsheets from three years ago, when I started to blog. My output at that time now looks phenomenal and totally impossible for me today. My daily workload, if you like, has been ripped apart and reduced to about 30% of what it once was. My days seem on the surface to be just as regimented, but I know that it’s totally haphazard. Every day, less happens than is planned and more often or not, I am pushed to the minute just to get it all done, when it should be a walk in the park. As I am slowing down, taking more time to do the same task, somehow I feel as though I am actually diminishing myself. Yet, I kid myself from time to time, that if I just applied myself, surely I could do all this faster, better and more efficiently. Then my brain vanishes and with it, my day. Once more I am staring at my spreadsheet for guidance and finding little, just a list of words, telling me what I have and haven’t done yet. At that second, I wish the timings were there, as if I could just see them, I would know how long I have been staring at a shelf and how long it will take me to catch up.

There is no way that I am going to make the mistake of applying timeslots again. I can’t manage them, they just put unneeded pressure on me, something that I don’t need. But when you are that lost, you want something, anything, that will give me a shoehorn back into reality. Sometimes, reality is more important than anything else, especially when you fear you are losing your grip on it. Brains are scary things. I once thought that the scariest thing that could happen to your brain was surgery, it isn’t. Finding that it doesn’t work, is even more scary. I remember a post I wrote a long time ago, were I was being wishful over the possibility that losing your memory might not be as bad as I thought. I had this wonderful idea, that logically if you can’t remember something, what did it matter as you wouldn’t know what was missing. It’s nothing like that. You know. You know every single thing that is missing. You know, you can see and feel the gaps, just as clearly as you hear the words that fall off the end of your sentences. You know. You know that something had to have been there between one month and the next, something must have happened, something should be there. You know. You know, that each memory that lines up in front of you, that people and names don’t match the faces you remember, if their faces are there at all. You know. You know it all and there isn’t a trick, or mechanism, or prompts, or a system that can bring it back right there, right now, when you need it.

There isn’t even a spreadsheet, diary, video or photo album that can save you from those voids. As for all the things that are missing alone, you would need a library of everything that you ever did, saw, read or watched. A book for every breath and what that breath tasted like, felt, achieved and meant. One for every person you pass in the street, thinking that you never even saw them, but without knowing, their image should there, your analysis of their clothes, their hair and who they were as their life touched ours and changed it. Without them and all the others, who are we now? Those books would fill a library bigger than our imagination and we’ed need another for that as well. Void after void, felt, seen and oddly understood, but hated. Nothing prepares us and nothing can save us, our brain isn’t there. Well, at least not the one we knew that we built, this illness is stealing it microcell by microcell, whilst laughing at us as it goes and for an extra giggle, just occasionally it returns one, but not in always the right place. It doesn’t matter how long we stare at the unseen or grope our way through the fog, we usually only find, what we’re not looking for. We can scream inside in desperation, something I frequently do, as it’s a pain that not even morphine can ease.

You pray almost daily that those you love are blind, that they don’t see your pain or notice your voids. Maybe with luck, they don’t notice your changing personality. The chipping away at your vocabulary, the dumbing down of the subjects, or the constant repeating of what you said not long ago, but have forgotten. It’s bad enough that physically you can’t hide any longer the effects of invisibility, but for your brain to demolished by the same unseen force, is one step too far. It’s just a brain, but your brain, it’s your past, your present and your future, it’s you. One more void, one more space, one more day where the simple acts of life have been left incomplete. It’s easy for those outside, to say don’t worry, it doesn’t matter, but it does. Everything matters, when that everything is yours, and that everything is you.

I can’t fix it, not today, not tomorrow. Not even the most skilled and perfect spreadsheet will make it better. Acceptance, is hard and not acceptable in any way. I know that it will eventually win, I don’t need to be a doctor to know that, it’s just the way it is. Knowing that doesn’t change a thing. It won’t stop me from working out new systems, scrabbling to find what will last for the next year, six months or even just a month. There is always a way through, it’s just a matter of finding it. Unfortunately, we all have to find it alone, as we are the only ones who can. Brains are funny things, annoying things, impossible things, but a thing we can’t live without. This morning, I woke with a wish to have a day without a void. That desire was smashed before I even left the bedroom, I forgot to put on my dressing gown and was sitting on it. Smashed again as I entered the bathroom and for no reason I could find, I turned the light on in a room where before I blinded myself, I could see clearly. Not even five minutes had passed from that wish being made and twice already it had been broken. I guess, that wish will never be answered and it shows how stupid my brain is, what did it expect when you ask for the impossible.

Please read my blog from 2 years ago today – 07/10/2013 – It’s not my fault

With a weekend slept away and as seems to be the norm these days, not quite making it ever to the alarm clock, thanks to my bladder demanding attention. Clearly that is the factor that would stop me from ever sleeping 24 hours right round, it wouldn’t….

A narative gone mad

It is official, my brain has left the building. When Adam leaves for work each morning I do exactly the same thing every day, I go to the kitchen and I sort out two things, my medication and my breakfast. You would think that that would be a simple enough task when you do it every single day, it appears not. I am still trying to find something that doesn’t make me feel sick in the morning so when I did a small shop the other day, I added a few options to my list, first was the hot cross buns which are now gone and next where some rather nice pain au chocolat, not something I would want to eat every day, but occasionally they make a treat. I decided that I as they were in the fridge that I would have two of them, they are far nicer when warmed through, so I lit the oven and left it to warm while I counted out all my meds and poured out the thick horrid gloop that is the medication for my bowels. Everything sorted out in the kitchen I came back through here to wait for the ten minutes it would take for breakfast to be ready, filling the time by sorting out a few more bits and pieces here online. I must have become engrossed as I suddenly realized that I had been sat here for at least 20 minutes and my pain au chocolat were going to be ruined. As fast as I could I headed back into the kitchen in the hope that I would still be in time to rescue them. As soon as I put the light on I was stopped dead in my tracks and stood there feeling rather confused, as there on the counter where the meds I thought I had taken, when I thought back I remembered that I had poured out a glass of coke to swallow them with but instead of taking them, I had left the room with my coke in hand. Not only where the tablets sitting on the counter, but I couldn’t smell breakfast at all, I should have been smelling burning or at the least the smell of overcooking, but I couldn’t smell anything, I opened the oven which was on, to see what was happening, nothing was happening as I hadn’t even put them in. Two simple everyday tasks and I had failed on both, I know it isn’t anything major or even that important as there was no harm done in any way, but it is annoying as once again I failed simply because I took one step out of routine and I lost the synchronisation of the tasks. Normally I pour my coke once I have done everything else, as the glass I pour when I first get up, usually still has enough in it to take my tablets. Pouring that glass of coke was a big enough distraction to my brain, for it to decide everything was done and I was then free to head off and get on with the rest of my day. I am finding it more and more frustrating as when you can’t trust yourself to do even the smallest tasks, well it makes the bigger ones more daunting, how can I do things like dying my hair, when I can’t even make my breakfast and take my tablets, what stage will I miss out and how much damage would it do.

Every single person in this world has a narrative that goes on in their head, it is there I believe to keep us sane and on track, it tells us what we are doing and what we have to do, plus it runs a story line to our life, it is the way we work things out and make sense out of things that have been happening. It makes us smile to ourselves as it picks up memories that we thought we had forgotten, or shows us the faces of those we love and it scolds us when we have done things that we are ashamed of, even when that thing is so many years ago, that we can’t even remember the year that they happened it. Despite the fact that it chatters away at us continually, when we are not engrossed in our work, the TV or conversation, we all live hand in hand with it and the second there is space for it to intervene and fill our minds with what it wants at that moment, it does. It is something most of us don’t even think about as it has been with us all our lives, constantly keeping us in check and ordered. I don’t know if it is because I have spent so much time in the last 8 years listening to that narrative, without the joy of work to distract me or even conversation, or if it is the damage that my PRMS has done to my brain, but I all too often now find that I can’t shut it up, that no matter what I am doing it distracts me. Even when Adam is here, I know that I lose track of what we are talking about because somewhere in my head, I am lost again listening to that chattering. That though is the truth of the lack of concentration, we all understand it when it is a case of something catching our eye, something material and tangible that we can use as an excuse for getting lost somewhere along the line, but when it is nothing more than your own mind, a mind that you can’t shut up, well that is when you feel you are really losing it. When you can’t hold onto even a stream of thought, like now when I am writing this, without racing off somewhere else with no way back other than to reread what I wrote myself, well it gets messy and I don’t like messy, inside my mind or out. The worst thing is that if you stopped me asked me where I had just gone, well that interruption would leave my mind once again blank, searching to just find something that makes sense, just seconds and my trail of thought, or even the chatter that gets in the way, has been forgotten.

It has been 7 years since they last did any tests on my brain, the last time that I sat and went through all their test, drawing shapes, naming the things in pictures, trying to remember lists or the facts from a story just been told to me. I did really badly on the last one, I hate to think how I would do if they were to put me through those tests today. Even the tricks they tried to teach me, those methods that were supposed to keep my memory working on my side, no longer work. When I do remember to use them, I fail because that chatter gets in my way and once again I am out of sync with what I should have been doing. Miss one tiny step, stop for a second, do anything that will allow my brain freedom to take me somewhere else and I fail, there is no way that I would remember any silly list that they read to men, nor would I be able to complete any of the games they wanted me to play. It wouldn’t matter how many pictures they showed me, how many different shapes I was supposed to remember and draw, I know without even starting them, that I would fail nearly all of them and fail them with style. I can remember so many odd things about those tests, but the things I remember aren’t the details, they are the feelings I had when I was sat there feeling like a child being forced to perform when all I wanted was to run away. I remember feeling insulted that I should be treated in such away, like I was some kind of laboratory trial, despite the fact I knew it was being done to measure the changes, but who were they being measured for. They say all the time that they can’t predict what my PRMS will do, so how do those tests help me, other than to tell me I am losing more and more of me. I honestly believe that if they were honest and just said that they wanted to test me to help with the data for those who will follow me down the path of PRMS, well then I wouldn’t have felt so bad about it all and maybe I wouldn’t have decided to stop going to see them. Being a lab rat isn’t a bad thing when you at least have been asked if you mind being a rat, rather than being told it was all to help me, it never helped, it just made me feel bad.

Life is a strange thing, we spend all our time desperately trying to make those lives better, to improve them and make something of them, then something unseen sneaks in and the one thing that drove us so hard, those thoughts, memories, dreams, and desires, suddenly become the very thing that stops us from achieving anything. It doesn’t matter how much pain I am in or how difficult something is to do physically, I like everyone else out there in my position continues to do what needs to be done, as we have no choice. Then this thing that none of us can live without, our brains, steps in to make every single act just that bit harder, not because it directly causes us more pain, but because it means we seldom complete anything as it was planned and constantly have to repeat those actions we would rather not have to do even once. Without the ability to follow even the simplest plan or routine, life becomes twice as difficult as it should be, if I could have just one part of me cured, one part of me restored to how it used to be, it would be my mind as it alone would change everything else.

Read my blog from 2 years ago today – 30/03/13 – Why sore >

Apart from tiredness I have to say things aren’t too bad, mind you it could be covering everything else, I have found that happening before. It is almost like your body is so tired it can’t be bothered to ache at the same time, a form of laziness I applaud. To be honest I think it is more a case of being tired stops you from wanting to do anything else so you…….


There are days when no matter what you do life just isn’t quite what it should be, things may seem fine on the surface, but look inside my brain and life is a mess. As I said in yesterday’s post I was up early, the truth of that was I had once again woken early in pain, hot and uncomfortable, I had lain there for about half an hour and Adam’s arrival in the bedroom was a huge relief as I could escape the bed that was causing some of the problems. When I don’t get a great nights sleep, well things just don’t really go that well for the rest of the day, I may appear calm and under control on the surface, but like a swimming dog, I am paddling like mad just below it.

At first it seemed to go OK, having that early start meant that I could get a lot done before I knew I had to get Adam up and ready to face the day, as we had the upholstery company we had selected coming to the house to sort out the contract and finalise materials and so on. Years ago it was the type of thing I would have done by myself without a seconds thought, but these days, well I need Adam with me as my brain just doesn’t sort out figures they way it once did, nor does it hold on to the details, luckily his does. I proved that several times in just the half hour that the whole thing took as I kept getting the figures mixed up and Adam’s reassurance and input meant a lot to me. I had completed my blog before he arrived, so all I had to do was return here to sort out everything on Twitter. Around half past 10 I suddenly out of no where remembered we still had in the freezer the other half of what I had bought for Christmas morning breakfast, so I suggested we had a brunch to use it up and Adam took it out of the freezer for me. I actually began to regret it, the second I suggested it as I really wasn’t feeling well, my entire body was aching and the pain in my diaphragm was ridiculous. I hadn’t felt right for a couple of hours and the muddle I had managed to get in when sorting out the settees, struck me as worse than the muddles I normally got in, everything was wrong and I could find no reason for it. I never dive into the booster pills without first trying for a while to either deal with the pain or wait and see if it will just go away with a little patience, but it didn’t. When Adam decided that he would like to cook breakfast, I was relieved and even though I knew that meant that food would probably be just warm instead of hot, he doesn’t seem to understand about keeping thing hot while you cook the next part, I still said yes eagerly. I knew when he left the room that meant that brunch would be ready in about 20 minutes and I wanted the pain gone, as I reached for my booster pill there was this sudden realisation that I hadn’t taken my tablets at 9am and it was now nearly 11 am, no wonder I was in pain and feeling like death warmed up.

My brain just doesn’t seem to be able to hold onto anything these days, if there is a single seconds change to anything in my day, I forget. I was out of routine with the time I had woken up and with my brain fixed on our impending visitor and getting Adam out of bed in time, my brain just ditched its daily reminder, again. Once I have gone past any point that something is meant to happen, well if it doesn’t it is just forgotten, if it is something like my tablets, well my body does get the message through eventually, but otherwise, well it will be the next reminder point before I even think about it. Tablets taken and food eaten and I felt better, but I still found myself standing in the kitchen with my dirty plate about to add it to the clean ones in the dishwasher, Adam spotted me at the same point as my brain was entering a spin of not knowing what to do with them. I could see the clean dishes, but dirty dishes go in the dishwasher and even when Adam said, “just put it on the side”, I still had this feeling of scared confusion until I put them down and turned away to look in a different direction, then normality returned in my head. Besides the tiredness from lack of sleep, fatigue was setting in alongside it, between the mix up with tablets and lack of sleep, I wasn’t surprised at all. I did take a booster an hour later as my body was just a mess. Three o’clock brought the pleasure of going to bed, I sat on the edge as always and got myself ready, clothes off, earplugs in, sleep mask on, lie down ensuring all my hair is out from under me and spread over the pillow, then relax. Sit up again as I forgot to set my timer for an hour and a half, lie down again and once again sort out my hair, something is wrong, lie there trying to work out what, then eventually notice, I hadn’t put my sleep mask back over my eyes, it’s sitting pulled up on my forehead where I left it after setting the alarm and the whole palaver had to be gone through again, because once again my mind had ditched one step because I had done it, I just couldn’t hold onto the fact I had also undone it. The whole day was filled with stupid silly little things that make life hard and things that no coping strategy could possibly change. The only part of the day that passed without mental dilemma was when eventually I was sat just staring at the TV and not actually trying to do anything else. Even my hour of game playing had turned into a personal confusion which when you are playing something that requires you to work out problems, well failure is to be expected.

Over the last year or so, I know without a doubt that I am having more and more days like this, days where no one other than me or Adam would see the slightest thing wrong, but we know. Yes I know he sees it, it’s another one of those unspoken things, a process of him just keeping an eye, guiding me gently back into a settled place and a major factor that means strict routine is essential. When I am on my own, I muddle along, sometimes getting myself into a panic or spending long periods of time scolding myself for what I see as stupidity. My brain just isn’t the brain I remember any longer, it still works well enough to allow me to manage, but it does the stupidest things without any reason or my permission. It doesn’t process the logical or illogical any longer as it quite often doesn’t know the difference, frustration is my constant companion and yes you do get used to even that. I often wonder what it will be like in the next year or even the one after, will it still let me do anything, routine or not that I would now see as normal, or will it create some odd new world where the illogical is possible and a friend.

My day didn’t end on the settee, no it ended as all days end, I was sat on the side of my bed, clothes off and rolling the little cylinders of compressed foam so that they become a tighter and smaller diameter, only then can I put them into my ear and make sure that they are twisted into my ear canal so that they from the best sound proof barrier. Like ever person alive, my brain started to go over the day and look forward to what today will hold and with my mind now no longer paying attention to what my hands were doing, I suddenly realised that I was in pain in my left ear, I was sat there trying to not turn the earplug inwards into my ear canal, but outwards through my actual ear and I was pushing the point of my fingernail into the skin. I guess what they say about a day that starts one way, ends that way too, is true, brainless.


Please read my blog from 2 years ago today – 31/01/13 – Working together 

Not long after I joined Twitter I made contact with a group of people who have been unfortunate enough to have a brain tumor, just one of the many groups of people that I have found share many of the problems that I do. It changed my reason for being on Twitter……………

Facing the truth

I had to laugh to myself last night when Adam suddenly asked me where I had put the stuff I had bought to fix the toilet roll holder which is handing off the wall in the bathroom. Not since the day I told him I had bought it, about three weeks ago, had he even mentioned it, so there was no doubt in my mind that that meant he had read my post. I had hidden it in one of the draws in the living room so that he couldn’t do his usual, hide it under the kitchen table in the hope that out of sight meant forgotten. He said he wanted it to be on the kitchen counter so it would remind him that the jog needed doing, but it wasn’t done last night as once discussed what needed to be done, he seemed to go off the idea, instead he started working on changing over the electric can opener, that was supposed to have been done a couple of months ago. At least it is one job done of the list, but I couldn’t not tell him when he sat down the rest of the evening about a tweet I had received following my post about the jobs not being done, it said: “Pamela, if a man says a job will be don it will be, he doesn’t need reminding every 6 months”, of course I got it wrong three times, which kind of spoilt its humour. I am just hoping that this is the start of not just the short list of jobs that are waiting to be done, but also the longer one, some of which have been put off for years, but as long as the jobs which stop heat loss from the house before the worst of winter hits, I will be happy.

The spasms in my diaphragm woke me this morning, I went from sound asleep to not quite sitting up in bed, more curled upwards in bed, as always my first reaction was to look at the clock then to try and work out what woke me if it was the alarm. I had barely turned my head toward the clock when the reason made itself known, there was no doubt at all as to what had woken me, as I lay back it cramped in harder, almost as though it wanted to remind me that horizontal isn’t good. I didn’t listen, it is one thing that I have learned to ignore over the years, warnings that try to stop me from sleeping, there was only half an hour to go so I was prepared to just lie there and wait. The alarm sounding proved that I had actually drifted back to sleep for a while at least and to my surprise the pain had gone. I had great trouble getting myself dressed today, for some reason I had left my pyjama trousers in a muddle, not there normal position on the floor that requires no more effort than to simply put my feet into the holes left by them the night before and then to pull them up. No I had left a muddle and one that when you are no truly awake isn’t the kind of mind test you really need, I tried to fix it and made it worse, landing up with one leg inside the other and no brain to workout which. Getting agitated is never a good way to start the day, but I honestly couldn’t sort it out, everything I did just somehow made things worse, at one point I was sat there almost in tears as I couldn’t believe that a pair of trousers were getting the better of me, so I stopped and sat there for a minute, just thinking, well trying to. Eventually I worked it out and feeling as stupid as possible, but at least dressed I headed to the loo, somewhere I was desperate to get too, probably part of the reason I got so wound up.

I have noticed it often in the past year or so that I am slowly getting more and more wound up by things, as I said the other day frustration is something I deal that well with, but when like this morning it moves rapidly past that point where I can logically pull back relax and try again, well the result is tears. My emotional controls have been shot for a long time, but as I mentioned recently, they seem to be getting closer and closer to the surface. To want to cry just because your trousers are in a knot is pure madness. It is beginning to feel like the slightest thing is becoming a reason to just gush water from my eyes, I lost count the number of times that I felt them starting while we were out on Thursday, luckily I had the strength to pull them back and to move on, but I was terribly aware of them, especially when we were chatting to the doctor whilst waiting for the ambulance. I got into a couple of mental knots, when I couldn’t make my point as my brain would only come up with one really bad example, the frustration of that added to the pressure I felt as I had a tame doctor willing to listen, plus the pressure of just being out, was a disaster waiting to happen. Luckily Adam was there to protect me and he did so several times that day, but it has made me face a fact that I have been hiding form, even though I now see that Adam was very aware of.

When the ambulance had arrived to take us to the hospital and we were doing our usual of trying to talk them into letting Adam come in the Ambulance with me, rather than having to call a taxi and having to catch up with us, I found my self saying that I needed him with me not because of my physically state as they thought, but I need him with me because I can’t cope mentally without him. I remember saying it whiles looking at Adam and felt the tears starting to form as I realised just what I had admitted. Looking back Adam has know it for ages, he always takes time off when someone is going to be here, or if I am going anywhere, he doesn’t like leaving me to deal with people, because he knows that I so often can’t. It is a hard thing to admit that you can’t deal with something as simple as an Ambulance trip from your house to the hospital, simply because you get agitated and panicky, because your not at home. I knew perfectly well that that was the truth, probably as long as Adam has but I just hadn’t admitted it and until you do, well it’s not real is it. Just like my total inability to take a shower or my night time medicines without him being my personal nagger, he is also my personal defence unit, my additional brain and my physical prop when needed. A couple of days ago someone on twitter thanked me for adding agoraphobia onto the list of hash tags I put under my links to my blog, I did it a few weeks ago when the possibility of having to go to the hospital first appeared in my mind. I didn’t put it there because I think I am agoraphobic, but because I suddenly understood it, maybe not fully, but well enough to realise it is as much a limiting illness and any other chronic condition. I can go out there by myself, but I know without a doubt that I would be so lost, so confused and so wound up that I wouldn’t survive long without Adam beside me to reassure me he is there as my voice and my brain when ever they choose to disown me.

Admitting the truth about anything that personal is always going to difficult, none of us want to admit that we are a shadow of the person we once where, which is madness. No one would take a second thought about having a plaster cast, or using any aid once there is no other way, be it walking stick or wheelchair, so when it is our brains, what is so hard about just saying I can’t do this alone, I need others to help me. The stigma is huge and that is something that needs breaking and not just in two, but into a million little pieces that can never be reassembled.

Read my blog from 2 years ago today – 14/11/12 – Who am I now?

Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think……

What? When?

Yesterday proved me right about things just not going the right way for me this week, there were several small and silly things which found me just feeling like what is the point of trying to anything as it was just bound to go wrong. Small things frustrate everyone, but when you aren’t too good on your feet, standing at the bin scraping leftover porridge into it, for it to somehow land on the floor, takes on a much bigger significance. Especially as when you bend over to pick it up, successfully without actually landing on the floor yourself, for it to somehow reappear back at your feet half a second after you have safely returned to vertical, well frustrating is possibly too small a word for it. I knew I had things planned throughout the day and I was behind with my normal routine, but they all had to happen, so when I stupidly clicked on something on screen to get rid of it and realised all too late what I had done, pushed me just that little bit too far. Suddenly I was bombarded by advert pages and my virus protection going nuts, along with tears of pure frustration with maybe a touch of tiredness thrown in there for good measure, I had been invaded by adware and malware. It was one of those moments when I just wanted to kick myself, curl up and give up even trying to do anything else. What was the point, clearly I was doomed to fail, so OK it isn’t that hard to get rid of, but it is one of those annoying things that means you have to spend time running correction programs and rebooting your PC, often more than once. When you feel you are already behind on what you are doing, something else to deal with isn’t just annoying, it’s life draining. I may still be totally in love with my PC, but I really wish other people would leave it alone, well not just mine but everyone else’s, it is one of those things that seems so obvious, but when your mind starts to slip, having good antivirus software is essential as mistakes like the one I made is just all too easy to do and in some cases can actually make your PC virtually unusable.

Adam didn’t come home for lunch yesterday as the weather was somewhat wild, to be honest, the way I was feeling at lunchtime, his phone call to say he wasn’t going to come down, wasn’t met with my usual downhearted feeling. I hate to say it but I was relieved, I do love him coming home for lunch, but there are days like yesterday where I am in such a muddle, that not spending half an hour talking is actually a good thing. Clearly, a lot of the stupid mistakes I was making was due to lack of true concentration, which by the way is one of many forms there are. I know most will think concentration is concentration, but it’s not. Yesterday was the loss of the concentration we all have throughout life, just making stupid mistakes as we are trying to do things too fast or without really thinking about it, but then there are the growing loss of concentration that is truly a sign that something is wrong. The first signs are just an increase when it isn’t just the odd occasion or an odd day where we can’t manage to achieve what we should, you slowly become aware of the fact that you are making errors all over the place and having to double check almost everything that you do. For me the first signs were at work, I was handing in reports that had errors in them, errors that would never have been there before. It was actually the reason that I started to teach myself to program, I had been using macro’s for ages, but they were no longer enough, I needed to get things right before I lost my job.

I was lucky as I discovered that I was entitled under some European fund to have someone come to work with me, to help with tasks I was having difficulty with. For about 10 months I had a lady come to the office every morning just to double check what I was doing and to distribute the reports around the office. I was lucky as at the point it all started to fall apart, my Neurologist decided that I was suitable for the chemotherapy, the drug they used was mitoxantrone and it was a miracle. In just two treatments, three months apart, my life turned around and I was given a second chance, everything including my concentration was restored. Unfortunately, it is a once only therapy, 2 years of the drug is all they allow as it damages your heart to have any more. It was, in fact, the drug that managed to slow things down but not forever, things still progress, just slower. Mistakes eventually did reappear, but by then I had everything running on bespoke programs so work was saved for a while, but mistakes happening all the time in your everyday life is what I would call the second level of concentration, the third level is more serious especially if you are still working. Level three is when you don’t just make mistakes, you drift off and are unable to complete tasks in the time they should take, simply because you are away doing something else. That inability to stay focused on one task may sound small, but if you spend a quarter of every hour, doing things that don’t need doing at the point, well I am sure you can imagine what that eventually does. It was at this point that I also started to find reading a problem, I would frequently find myself not just having to reread the last couple of lines, but paragraphs and pages, add in a failing memory and the impact on everyday life just grows. The fourth and final stage, well I say final, as it is the one where I am now, is not only drifting off but drifting off to do things of no importance to anything. I have found myself web surfing for nothing, just jumping around on links, playing games and fiddling with things on my desk that somehow catch my eye and my attention. No matter how much I have planned for my day, I now have to build in room for me to just waste time. I get the odd day where I can stay focused and when I do, well it’s amazing how little time my daily routine really should take, I waste about two hours every day, with no idea later what I was doing to lose it.

To me, the worst part right now is when I lose track of conversations, when my brain has wandered away somewhere and I suddenly don’t know what Adam is talking about, I have missed most of it. The same happens with the TV and when I am writing, the possibility of just completing something is limited. I know it will like everything else just keep getting worse, I like most people like to lie to myself, by saying this is as bad as it will get, but I know it will. I guess what makes it worse is when my lack of short term memory joins in, then I really stand no chance. We can be watching a TV program and talking about it, then suddenly I stop dead, I can’t remember what we are talking about, or the names of the people who are right there in front of me on the TV set, once again they have ganged up against me. It’s now a daily occurrence and what stage five will be, well I’m not sure, probably when I can’t keep my mind on just being me.

Please read my blog from 2 years ago today – 22/10/12 – Dip 

I crashed again last night. That about says how I feel this morning, short and to the point. I felt it closing in as the evening went on and by 10 o’clock I was almost crawling to my bed. Sunday night TV is to me at it’s best at this time of year, I can more than happily watch the BBC from the evening news right on, which…..