One huge niggle

I have had a bad night, in fact, my second bad night in a row and I doubt if it will be of any surprise to anyone the reason why, yes it’s my guts again, causing me pain and embarrassment. I am really getting this maintenance program wrong, I know it is all about trial and error, but this week has been mainly error. On the good side, well I have learned two things that don’t work, so it’s just a case of not doing them again and trying something else. It appears that like everything else in my life even getting a new medication routine worked out leaves me exhausted and wondering if it is really worth all the effort. It isn’t just the disturbed sleep though, it is the overproduction of gas and the constant trips of all day yesterday, last night and this morning back and forward to the loo. Even such limited exercise has become something I am just not up to, I was totally wiped out all day yesterday and having now not slept well last night, well I can’t even walk properly this morning. I am just staggering around the place, bumping into anything that is in my way, which of course, seems to include walls, mind you if they weren’t there, well I would have been on the floor at least twice so far today. The odd thing though is I am even yawning, which seems to be something I just don’t normally do. I can only think that this is really a mix of PRMS exhaustion and for once good old fashioned tiredness, which is something I haven’t known for many years. I know that for anyone who doesn’t have or live with someone who has an array of chronic illness just won’t understand, how can you be exhausted but not tired? I have explained it several times in the past but without the glorious aid of yawning, it has been so long since I last did it, that it has sort of vanished from my mind as a possibility. But it is a sign of normal everyday need to sleep as your body has started to breath shallowly, the first step in shut down and the prelude to all sleep, but it leaves your body desperate for oxygen because you are fighting the whole idea. All in all, it is looking like it is going to be a tough day, I suppose that after just a few days ago when I wrote about the issues around my fear of going into hospital and my main fear of not getting enough sleep, well the last two days have been the proof I really didn’t need.

Just before I started writing I decided that it was time that I made myself breakfast, but as seems to be happening more and more in the morning, I really wasn’t hungry, so I settled on a couple of small tubs of yoghurt. My appetite has been really rather poor all month, but I have made a point of making myself eat, even if it isn’t as much as maybe I should, I am at least eating. I was half way through the first pot and I started to not feel full, but to feel the tight line I get at times across the top of my stomach, about a couple of inches below my breast bone. I pushed on and ate both of them, by the end of the second, the entire area from one side to the other felt tight and uncomfortable, not unusual, but the fastest I have ever felt it happen and on the smallest quantity ever. I know I have said it before, but I still feel that there is something wrong in that area, I don’t know what, as all the tests they did two years ago showed nothing other than it had to be my PRMS, but there are only two things that upset it, eating and lying down, neither peculiar to PRMS, which is there all the time. The other week, because it appeared in my two years ago post that I highlight at the bottom of page, I reread all the details of the symptoms I had when all this started and they sent me for all the test that they did. Everything is identical, right down to the odd pulsing that I feel below my rib cage on my left side and the feeling of bubbles under my ribs on the same side, every pain, their position and their triggers are identical with just one exception, everything and I do mean everything is worse by a factor of about 100. The only thing that is growing at a faster rate is the bruising I have on my ribs, mind you that was eventually linked to my COPD and PRMS’s role in making my diaphragm go into spasm, two years ago it was a small cluster on my left side and faint red band around the line of my rib cage, now there are several clusters right across my front and the ones on my left side have risen in number whilst never fading or going away.

It is a constant battle, not just for me I am sure of that, between having faith in what our doctors tell us and what our bodies tell us. I don’t have the slightest doubt that my PRMS is playing a part in what is happening to my guts, just as it is playing a part in my COPD, but something keeps telling me it is only a part, there is something else here and it just isn’t adding up. I am one of these normally accepting people, the kind of person who went as far as almost convincing themselves they were the biggest wimp on the planet as if different doctors over a 20 yr period couldn’t tell me why I was always in pain, well logic said that if they could find nothing, then the only possible answer was everyone lived with the same pain and all the other symptoms, and I was just making a fuss over nothing. For me to still be sitting two years on with the same niggle, the same doubt that they are missing something, well that says to me that either I have changed fundamentally as a person, or I might just be right.

I have spent nearly all my life with the same problem, what do you do when you don’t believe what your doctors are telling you? If it were just my GP, then I would insist on being sent to the hospital, but you see it is actually the hospital doctors I am doubting, not my GP. My doctor works from the information supplied by the hospital doctors and they did the tests that they thought were right and drew their conclusions from them. To be fair to them, if they could find nothing on the endoscopy or on the ultrasound, well what other conclusions could they draw. I don’t have any problem with some of the facts, I totally accept that the nerves to my intestines have died and don’t give the right messages, I totally accept this means that food has to be forced through me in some other way, but I don’t accept that it is behind the changes that happen when I lie down, that doesn’t fit. I don’t see how it can cause the clear pulsing, or that it is the exact same sections that packed solid and painfully eventually let the contents pass a few more inches every now and then, only to fill and become tight again when I next eat and that even though I have diarrhea from the meds, that same section is still packed tight and not letting go. I totally accept that my PRMS is causing some of the spasms in my diaphragm, but not the constant pressure that just doesn’t give up, or the pain that totally matches in its arrival and release to the section of intestine that blocks up below it. Finally, permanent bruises, I can see how the ripping of the muscle from really tight spasms can cause muscles to bleed, but for those bruises to be there for two years, never disappearing and only getting worse, that would require constant slow bleeding from the same places all the time and that isn’t right. It doesn’t matter how many pieces don’t fit, I find myself stuck in the same place with nowhere to go and no one to turn to as they all have their own brush off points that start with PRMS. I used to be driven mad by the fact that I couldn’t get a diagnosis for what I knew existed and finally was named as PRMS, but it has become a scapegoat for everything and I now find myself doubting more and more that it is the cause of everything.


Please read my blog from 2 years ago today – 28/02/13 – Relief of time

I retreated to my bed at 8pm, exhausted and with such a need to lie down that there was really no option. The day had been quite average until Jake turned up just after 6 to collect a new cymbal for his drum kit. I had bought it throw Ebay for him and with him working it meant there was someone there to take it in when he was at work………..

Surviving love

Life can be a real strain at times when you are living with a mind that seems to have a perverse joy in tripping you up all the time. I am in one of those phases where I am spending more and more time simply frustrated with myself because I just can’t follow through with a simple thread without getting wound up in it. It doesn’t matter if it is just in conversation or finding myself unable to complete a task, I keep finding myself unable to finish what I have started. Adam has always been the type of person who doesn’t like things being pointed out to him, which with the age gap and difference in life experiences often is very difficult for me not to do, when you are comfortable with the person you are talking to it is especially hard to be guarded all the time and not simply let your mind run your mouth. There have always been and I suspect always will be times when tact has gone out the window and I hear what I am saying at the same second he does. Having been a manager and with a reasonable understanding of different management styles and personalities, I often find myself trying to help him with situations at work where he has become wound up by the behaviour of his manager or someone he is working with and I do my best to explain what I believe their thinking and actions are really about, whilst trying to calm him down and not make any of my guidance sound patronising. Over the last few months, his stress levels with work have been through the roof, something that if you read back over the last month you will see clearly the knock-on effects. In the last couple of weeks, everything has been rapidly improving because we have spent long periods talking and going over both our lives together and his work situation. It is because he is now so much calmer and dealing with thing so much better that I actually feel able at last to write about this as I know if I had before that he would have read it then bottled it all up again out of fear of putting stress onto me.

When your mind isn’t quite what it was and you know that without any malice or even any reason behind it you can become wound up, not quite shouting but forceful in your speech without hearing, feeling or even comprehending that it is happening until much later, being a confidante, is hard, incredibly hard. It meant that for the first couple of week when we seemed to do nothing but talk, I had to put a lot of my energy into monitoring myself, whilst listening and responding with thought to what had actually been said, rather than just letting my answers flow. We needed to listen to each other, something I think we both had not really been doing for a while. When life centres around what my health is doing at that moment, both of us as people have at times, vanished and us as a couple, well we didn’t always exist. Like millions of couples out there we were coasting and for me that meant life was easy, but for Adam it was stressing him even more, as he rightfully felt that everything was on his shoulders. It wasn’t the way it was planned or even thought about, but it was what happened because I was so caught up inside my illness and he was doing what he thought he should. It is hard for me to write for Adam and I don’t intend to, this is really for all those husbands and wives who are ill and find themselves feeling an odd combination of guilt, reliance and love for the person who they adore, but can’t show it in the ways they used to.

There were a couple of occasions recently when simply because I had reached the point of exhaustion, that I knew my tone was scalding and judgmental, neither were the desired effect but they happened and I later had to apologise only to have Adam say that he knows it’s not me, as if it were, well he would have been gone long ago. It doesn’t matter how much they understand what we do and say thing that aren’t really in our control or that they know without a doubt that we aren’t that snappy, rude or demanding person who just sits there doing nothing, I realised in the last few weeks, that I had stopped saying sorry. Somewhere along the line, probably because Adam kept telling me I didn’t need to apologise, I stopped. It wasn’t until we both stepped back and took a long hard look at us, each other and ourselves that I noticed it, I had allowed my disabilities to take over, it rather than me, was living here with the person who did everything for it. Other than when he brought me something, I couldn’t remember the last time I thanked him for doing the housework for me, or the washing or any of the other things he now does that used to be my jobs. I know that just like the “sorries”, he told me to stop thanking him and just like the “sorries”, I did. I had also stopped even trying to not snap, or to be abrasive, what my brain did, I did and I carried on without doing anything about it. Between the three of us, me, my illness and him, we had pushed each other away and let my illness win and it happened without either of us even seeing it.

It is incredibly difficult to live all the time trying to control the uncontrollable, but in the last few weeks, I have been doing my best to do just that. I haven’t achieved my goal of being human with an illness, rather than just the illness all the time, but I have realized that I have to keep doing that for as long as I can, not being easy isn’t an excuse, it’s a cop out. Yes, I have to still stick to routines and I have to keep my world as stress free as I can, but that can be done and still remembering that my carer is also my husband and he has every human emotion and feeling that he always had, even if I no longer do. Temporal lobe damage is a fact, it means I will never be the person I was or able to do the things I once did, but I still have enough control to be able to show I care more than it might appear that I do. It is so easy once you are this ill, to just slip into routines that you don’t intend and to not notice the importance of the small things that lets other know just how grateful and appreciative of everything that they do for us. I have already lost control of many of my emotions, I react in ways that I wouldn’t have done years ago and I will never have that control back, but I do have the ability to say sorry even if I am not allowed to use the word itself and we all do.

When your mind feels as though it is no longer yours, making mistakes in simple social responses and reactions will happen and we can’t change that. When your body is always in pain and as useless as a burst balloon, it will let you down and embarrass you, it will mean that you can’t do much of anything of any use to anyone and we can’t change that either. But we can remember for as long as we can that the people around us, especially those who care about us are humans with human feelings and we have to remember to treat them as such, for as much of and for as long as we can. To those who are our carers, please don’t bottle things up, we are fragile but we don’t break with the slightest knock, talk to us if we annoy you, hurt you or put more on you than you can really handle alone. Love can be shown in a million ways, but when it is hidden behind illness, from either side of that barrier, it means we have to try that bit harder to still be people and to make sure our love is felt, as it is the one thing that really can and does make a difference to our lives.


Please read my blog from 2 years ago today – 27/02/13 – Which are worst 

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again……….

Not quite 140 characters

I was asked a question on Twitter yesterday which read “How do you feel about automation in conjunction with #live #SocialMedia #engagement”, which was clearly something I wasn’t going to be able to answer in 140 characters. I know that scattered throughout my blog you will find posts that would in part answer it, but I also know that not one of them would without asking many more questions to get a full answer. I honestly believe that without social media that my life would be totally different, I have written fully many posts that say how important both Twitter and blogging has been for me and how a fortune could be saved by the NHS by give those with chronic illness or simply living alone or just getting on in years, if they gave them all a suitable device to their needs and basic some training. Loneliness and depression numbers would drop dramatically as quite honestly it is a lifeline, but that is only a tiny part of the question. Automation on the surface sounds like a wonderful aid for so many people with disability, I know I have watched on TV the steps being made that will hopefully one day give many people total freedom from wheelchairs and so on, but I watch them also with the feeling that none of them are practical or usable on a daily basis. We are still years away from developing true useable aids for people who have walking issues of any sort, where we are now is quite simply an amazing stepping stone. It doesn’t matter what the aid is, for it to be used and accepted by people like me, they have to easily used without any aid from anyone around us at any time. A true aid allows us to get on with life as though we don’t have a disability, of all the ones that I have found useful, have turned out to be the low tech solutions rather than the high tech ones and that isn’t because I have a problem with technology.

I have two great examples, the first one was when I lost the use of my left hand, my PC had a programme on it that was supposed to mean that I could use it without a keyboard all I had to do was talk. I promise you I really did try, I tried and tried, but it just didn’t understand me, no matter what I did, it wasn’t helped by the fact that PRMS along with a lot of other conditions means that you at times stutter or slur your words. It did start to learn, but I was still quicker typing with one hand, but I decided I was going to try to use it for work in the hope it would learn faster. It didn’t recognise Excel spreadsheets, nor did it work with any of the formats I used for programming any of the Microsoft office products or any Visual Basic environment at all and did nothing no matter what I said, by the way, it was a Microsoft product. I have since tried other products, but the issues remained the same, they just couldn’t deal with the silences while I tried to think of the next word or with stuttering, I gave up on it totally.

PRMS destroys the brain, very much like people with Parkinson’s or Dementia, our brains don’t hold information in the same way and if new items are too confusing by requiring you to use multiple menus in different screens, we get lost. If you add into that controls that have small buttons that are difficult to use with poor dexterity or poor eyesight, lack of concentration and memory issues that leave us staring blankly into space for what to do next, well things like our new smart TV becomes a one-eyed monster sat in the corner of the room goading me. Just 5 years ago I would have had that thing understood to a tee in at most a couple of hours, without trying to understand their small print instruction manual, I’ve never used one. I have always learnt by exploring and often found shortcuts not mentioned anywhere, they were the kind of things that I as a programmer would have created simply for me and for ease of getting around whilst I was still building the program. These days, well my brain goes into a frustrated spin, I can’t deal with the small fiddly control and trying to read what is on screen. My poor dexterity means I land up in places I wasn’t trying to go and when I do get there, one tiny touch can throw you right back to the beginning or I get annoying messages telling me what I already knew, I have done something wrong. Instead of two hours, it has taken my two months to get to grips with the most basic side of it, I know it does a lot more, but I can’t deal with it just now, I can’t deal with it frustrating and how it winds me up, for what, a TV?

It isn’t only gadgets that cause us problems, I wrote a post at the beginning of this year as I had just discovered that parts of the internet are being closed off to us as well, down to nothing more than thoughtless programmers who can’t seem to understand that not all of us are the same. If the world is to stay open to all of us, there is one rule that right now is hard to apply, because of the way all technology is made due to the fact it itself is still being developed, that rule is “Keep it simple”. No one is hurt by finding that a five-year-old can understand how to use the washing machine, but nearly everyone is hurt when they find you have to have a degree in advanced programming. To me, it doesn’t matter what it is, what this wonderful new advance in technology does, if I can’t use it, it’s just an expensive waste of money I don’t have and time I am not willing to lose when every minute of my life is now counting down. Automation has made mine and everyone else’s lives easier, that is clear to everyone, but if it is going to continue to be, it has to accessible to everyone without it being priced out of our diminished pockets and it has to arrive in a form that we can use it with ease.

If I could afford it and if I knew before I had to spend a fortune on it, remember I am housebound, I can’t go anywhere to try something out and companies don’t let you test software for clear reasons of copyright, I would now be looking for a voice-activation package that would work for me with the gadgets I have and the platforms I use. I know already that my arms don’t always want to be typing and I know that I would have far more time to just relax and do other things if I could just sit here and talk to my PC, I also know there will be a time when my vanishing energy will destroy all the pleasure that the web brings. I along with millions of disabled people for the foreseeable future will eventually be both priced out of and mentally barred from being part of the wonderful new world that is slowly being filled with exactly the things we really need, the things that could and should be make our lives better.

Please read my blog from 2 years ago today – 26/02/13 – Changes 

One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to……….

Dreams caught in time

Having just enjoyed one of my favourite treats, oatcakes and as it is breakfast I ate them with ginger marmalade, I am now suffering the problem of having not been to the dentist in 8 years. No, I don’t have toothache, just two broken teeth that everything of that texture seems to take pure joy in lodging themselves in and can’t be shifted by my tongue alone, probably why it used to be fashionable for toothpicks to be in every home, they were needed daily. I know there is a dental service available at the local hospital for people who are housebound, it has to be within a hospital as to get there clearly I need an ambulance with a stairclimber just to get me out of here and home again and they are only available if you are going to a hospital. I find that so maddening, it is almost as though by being housebound, we suddenly don’t have the same right to health and is the reason why I don’t ever really see my GP. I don’t expect them to assist to take me out just for the hell of it, but surely seeing our GP’s and dentist should fit into the same bracket as seeing a hospital consultant, it is after all, still our health. Either way, I still might not have been to the dentist any sooner as I so hate that stair climber and the whole process as I have said before, of just getting ready to fo anywhere is draining and best to be avoided if at all possible. Just sitting here thinking about it has made me decide that I can live a bit longer with strange gaps where tooth enamel once was.

It’s odd how all our values change once we are ill, so many of the things that we held as important and life essential, seem to just fade and become a dusty memory and of no value at all. Chronic illness doesn’t just destroy our health, it destroys our dreams and diminishes our belief in not just ourselves but in everything that once seemed so clear and so simple. When Adam and I got married, I knew without the slightest doubt that our dreams were very different from each other, not because we had spoken about them, we were still at that stage of love when words aren’t needed as be felt we understood the other without them. I didn’t need words to tell me what I knew was a fact, because I was 38 and he was 21, I knew his head was filled with wild hope about riches, success and a long extravagant life together and all those other fantasies we believe will just happen at that age, mine was filled with stability, planning and financial security. It was Adam who wanted to buy a house, I was strongly of the opinion that they were nothing but money pits and unless you were going to have children to pass on your home and money to, not a great move at all, but I couldn’t say no to him, his wide-eyed fantasy was possible, but on my terms. I refused to have a huge mortgage around our necks, it had to be affordable and it had to mean we could still have a life, not one spent living on baked beans and water. So we bought our flat, the one I am now so much in love with and he wishes I hadn’t given in over, as now we would be housed somewhere more suitable for me. I didn’t have the time to secure our future, to build up a nest egg that would mean I could retire and enjoy a life with Adam for as long as it lasted, or the slightest chance of securing a future for him once I was gone, as within 2 years, I was too ill to be allowed to dream.

Being diagnosed with a progressive degenerative condition takes away all our options. From the day I had to walk into my office and tell my employers that I had PRMS, I also knew that was the day when I lost all power over my future. I lost the biggest and strongest bargaining position that employees have, to leave and find a new job if they don’t pay you what you are worth. Other than the annual increment that every employee received, I never had a pay rise from that day on. They knew just as I did that I couldn’t just leave and get another job and as my health got worse and I needed at first a stick, then a wheelchair, the harder they drove to get every single penny of what they paid me and more. 10 years on the same wages meant that I was miles behind what others in other companies earned for doing half what I did and every last dream I had was snuffed out. Yes, there are laws out there to protect those in my position, but use them and it goes without saying you really will never work again and I needed I thought to do everything I could to build up our home and make it the best I could, while I could. My ambition and only one became to work for just one more day, week or month, to have a wage for just one more day, week or month, that was my only focus, not my health or what was happening to anyone else, I had to make things as perfect as I could right then as I might not be here tomorrow to do so.

I no longer had or have, any dreams that look any further into the future than those same days, weeks or months, at least not for me, my health has taken them all away. Becoming housebound whilst still working, put me in the oddest position, but one that allowed me to live in a very different way and changed my future even more. I don’t know why but it gave me back a strange feeling of control over what was happening to me, a limited life had it’s advantages and it’s bonuses that I wish I had seen long before and once I was made redundant and eventually I had totally broken that fear of not earning a wage again, I found freedom. Once there is no possible future left, well oddly other than depressing, it is actually liberating. My health has taken every single thing that we have in our heads about what having a future means and replaced it with total freedom. I have lost the concept of weekdays, weekends and holidays, I no longer have to think beyond this hour as what can the one after it hold other than more of the same, freedom of thought and of heart. No matter what we like to believe, true freedom of thought doesn’t exist when we are locked into the world of work, a world we are told is our right and what our dreams can be achieved through, but it’s not.

My memories may be muddled now and my body crippled but I don’t remember ever feeling as free as I do now. I don’t have the money to do any of the things I once thought important, I don’t know where the money will come from just to cover the bills at times, but we always manage somehow and most importantly we still have each other. For everything that the outside world would say I have lost, I have gained something in its place, I just wish that I didn’t have to live in pain to have it. Adam is approaching the age I was when we first met and he has suddenly discovered the ambition for financial security, I truly hope that he too will eventually understand the freedom I feel, but without any of the pain or physical confinement.

Please read my blog from 2 years ago today – 25/02/13 – Something ODD? 

Well an hour ago I know I had something that I needed, really needed to write about today, I just wish I had the slightest idea what it was now. Yes I know it is a constant problem and one that you would have thought I would have taken the logical step of writing things down when they are in my head, but I always forget to do it……………

Rambling inside

I am so far behind this morning that I have given up any hope of catching up, I am just going to have to go at the pace that today will allow. Things started out alright and Adam, before he went to work sorted out the moving of the furniture in the living room, ready for the return of our newly covered settee’s. They had said that they would be delivered before 10:30am but I never thought that meant before 9am. Adam had been only gone for minutes when the doorbell rang in a fashion that no one could miss of that of someone wanting to make a delivery, I have always wondered why delivery people ring doorbells as though they have to wake the dead, but they do and they probably always will. Despite the argument I had with them when they phoned to say they weren’t going to be ready on time, that despite behind 6 days late, their work is perfect and both of them look wonderful. It took ages for them to be brought into the house and sorted out, they had to take extra care with them as they were really worried about them getting anything on them before I saw them, being cream, well I understood their fears and appreciated their care. It feels so good to be sat here once again seeing them almost glowing back at me across the room, something I haven’t seen for what feels like a very long time, mind you it might be me that is glowing and not them.

I know to some it will sound silly, but I have avoided a doing a couple of things due to the fact that they were out of he house being worked on. My doctor made me aware of a company who will order and pick up your prescription from the doctors surgery, have it filled and then deliver my medication to the house. Ever since I have been housebound, I have been phoning in and then supplying them with stamps to post the prescription here, then Adam does the rest for me. The system has worked reasonably well to date, but it does mean that like last week when I needed a new drug quickly, I actually had to wait three days before they were here for me to take, so this new system seems really good if it works. I spoke to Adam about it the other day and at first he was really against it, he for some reason saw it as part of his role, to be the one who went back and forward to get my prescription drugs for me and actually sounded hurt that I was even thinking about taking that job away from him. It was really quite sweet, but once I had explained that it meant that when I needed a new drug quickly that I would have it that day or at least the day after, rather than waiting for days before being able to get what I really needed straight away, plus it meant no more stamps to pay for, he came around to the idea. So now that I have a suite for them to sit on, I am going to contact the company to arrange for their rep to visit me to get things set up.

I have also been holding off from seeing the MS nurse, the doctor again suggested that it might be a good idea to have them come here to discuss what can and can’t be done to help with my bowels issues. From which I took that he was really saying that other than giving me different drugs until my bowels decided to release their contents, he didn’t have the slightest idea what else to do either. I am not sure what help they can offer, but I can’t see it doing any harm, after all they are there to help, it is the whole point in them being employed by the NHS. But I really do fear that it will be exactly as it has been in the past, just a lot of talk that leads nowhere. It’s odd when I think back to when I was first diagnosed and how hopeful and eager I was to try everything they could offer me, be it painful or not, these days there is nothing more than grudging acceptance that they have to meddle in my life, in the hope that one of them, just one, might actually have an answer to just one of my questions or better still, a solution for one of my problems.

I found myself lying awake last night in bed, it was the middle of the night and there was no reason what so ever for me to be awake, far less lying there with a million things tossing around in my head. I just wish now I could remember even one of them, but what I remember was simply my thoughts were racing from one thing to another over the entire length of my life. It’s daft how our minds can be on one thing one second and with no connection what so ever, you are years away with totally different people and voices all echoing and sounding like lost sheep in a storm. What is the point in memories when they hide from us and when they do eventually choose to be known, they make a fuss and vanish again, leaving you lost with just a faint knowledge that they were ever there. Somewhere in that muddle though was the reason why I was awake and it could at least have had the common decency in letting me know so, otherwise why insist in destroying a perfectly good nights sleep? I am finding more and more that my mind is filled with the oddest of memories, things that I thought were long settled and long dealt with, what is the point in a memory of my throwing sand into the eyes of a horrid little boy at nursery school, when I don’t remember what he looked like, or even his name, far less what he did to deserve to be remembered as horrid. Or in going over for what feels like the millionths time the events in a nightclub when I was a DJ, or a discussion in the boardroom about future budgets, they aren’t the sort of memory that has a true value in themselves, but they keep appearing, never changing, never finding more meaning or even a relevance to my life now. I thought that the things we would hold onto, were the good thoughts, feelings and events that made our lives happy, not odd events that weren’t even important at the time, far less now.

When my father’s father died, I remember not long before he went that he started to hallucinate and would ask us to straighten the pictures on the wall, or wind the grandfather clock, all things clearly not there in his hospital room. At the time although I was young, I thought that the fact all he could focus on was his working life, that that meant he didn’t care for or love any of us, now I am beginning to understand, what goes on in our minds as they start to slip, has nothing to do with anything. Our unconscious thoughts are just ramblings, like lightning flashes they appear, vanish and disappear to be simply replaced by another, just as pointless, just as banal and just as much a waste of time as the one before. They are demanding and nothing will shut them up until they are ready to be silent, try as you might, you can’t even change them or move them along to more happy ones. I can now lie with ease for a couple of hours, lost in a train of thoughts and totally unable to name more than one, I guess I am beginning to understand just how pointless it is to try and make happy memories, as our minds will only hold onto what it wants, not what we want, we can’t make memories, they are just what they are. Spend your life working and should it be that surprising that our memories circle around the work that we did, as we spent more time there than any other place in our lives. I just wish that these mad lesions that are eating my brain could learn to eat away at those things that no longer matter to anyone and tweak the rest to be just the happy ones.


Please read my blog from 2 years ago today – 24/02/13 – New or nothing 

One of the biggest problems I have had over the years of being ill is knowing exactly what is my MS, one of my many other conditions, age or a bug. I have always felt that it is all too easy to write everything off as my MS as so many doctors do. Until the last couple of years……..