Brain power

Posted on March 22, 2016 by livinginalimitedword

I got up yesterday morning to be more than a little confused by what was in the fridge. Right there beside the milk was a bottle of mouthwash. I know I do some rather stupid things at times, but somehow, I always hold a memory of it, once I’ve discovered it. Yet I was staring at the mouthwash and there was no memory, not even of one of having used mouthwash overnight, the only explanation, was Adam. It didn’t make any sense, but I decided to leave it just where it was until he woke up later. The temptation to wake him was huge, as I had this huge question, “Why? spinning around in my head. As luck would have it, by the time he actually woke, I had forgotten all about it. It took only minutes though for his head to appear around the door, looking at me quizzically and asking “Why is there mouthwash in the fridge?” We then spent the next half hour, throwing our defence into the ring and each other having our say about it. Then silence fell for about ten minutes before Adam said “Well logically, the most likely person to have put it there is me. After all, the seal on those bottles is really fiddly, and you’ed have never managed it. And the seal is off and in the bin, I’m sure you wouldn’t have managed it. but I still don’t remember doing it?” I tell this story for two reasons, firstly, the next time he accuses me of doing something stupid, I will hopefully remember this, and remind him of it. Secondly, to prove that it isn’t just those of us with brain damaging conditions, who put odd things in odd places.

My personal track record is actually quite spectacular, it’s just Adam rarely finds them first. When I do silly things like putting clean dishes into the dishwasher, or the dirty ones back in the cupboard, which are my favourites. With Adam being at work and my using a range of dishes he rarely even touches, well, of course, it’s going to be me who discovers my mistake. What I don’t understand is why the second that I see them, I actually do remember doing it. How can you do something like that and blindly go on as though nothing is wrong, yet remember every second of it? I have come to the conclusion that it has nothing to do with memory, but it has everything to do with not making connections at the moment I do these things. Somehow, my brain doesn’t pick up on the fact I am doing something illogical, so I continue and complete the action oblivious to the fact it’s wrong. Somewhere in my head, I have made the error in starting the action and it’s as though my brain doesn’t want to admit it’s got it wrong, so it tries to cover it up, by lying to me, by telling me “This is what you should be doing, don’t think any further.” Unlike what Adam did, as we are now both convinced that he fetched the bottle of mouthwash from the bathroom cupboard, opened it and put it in the fridge, all in his sleep, despite the fact, that he’s never sleepwalked in the past, that we are aware of. Our brains are capable of the most amazing things, is it really that surprising that they can play these sort of trick on us?

The damage that a condition like MS can do our brains is never ending. It appears, to be totally down to the luck of the draw, how severe that damage actually is. I never saw my initial MRI that was requested by the ear, nose and throat department. Despite all the test doctors had done on my over the years, not one ever did either a CAT scan or MRI. When I was diagnosed with Fibromyalgia, the doctor specifically said, that there was no point doing such tests, as there was nothing to point to anything more severe. She did, though, send me to ENT for them to work out what was wrong with my balance. The Doctor I saw there, quickly dismissed the idea that I had Meniere’s and he sent me for that fateful MRI. I remember him clearly saying to me when he had the results, that I had either had a phenomenal number of Stokes for someone my age, or, I had MS. Well, we know the correct answer, but I still wish I had asked to see it, and what my phenomenal number of lesions actually looked like. Whatever they look like, I am more than aware of what they are doing to me.

I have a report that was written by my Neurologist in 2006 which I requested with reference to my abilities when it came to working. In it, he refers to my neuropsychological reviews, which showed “that memory is now significantly impaired in relation to general intellect and there is also evidence of frontal dysfunction.” He added later “I can not comment on the quality of her work, but clearly given her cognitive problems, her work is likely to be slower than previously and it is likely that she is more prone to becoming frustrated.” Although this was written in 2006 he was referring to the last tests done in 2003. It goes without saying, that without a doubt if they were to perform those tests now, my situation, will have deteriorated. Progression is something I just have to live with, but I have to say, that it is also part of the reason that I no longer see my Neurologist, I was fed up of tests that kept saying things were worse and no one being able to change a single tiny part of it. My lesions are eating my brain and slowly eating me.

When your brain starts falling apart like this, well he’s right it is frustrating, in many ways, it puts me in line with many patients who have Alzheimer’s. Just like them, my brain is destroying my life. Even if I could get out of my flat, I wouldn’t be able to work, in 2006, they recommended that I reduced my hours to part-time, but I didn’t. I wish that it was as simple as doing a little sleepwalking, or even having done something wrong or stupid, and simply forgotten. Brains are funny things and none of us appreciate just what they do until they stop doing it.

Please read my blog from 2 years ago today – 22/03/2014 – It should be easy

There is one thing on my mind today and that is comfort, it doesn’t seem to exist and it is also one of the hardest things to not think about or block. We all know what is like to just not be able to find a comfortable position, to keep moving, changing angle and pressure points over and over again, but without the slightest change that lasts for more than a few seconds. Those evenings spent in the cinema trying to enjoy a film you have been waiting to see, but the comfort monster has you in its grip and as hard as you try to stay still, to not spoil the film for those around you, you can’t. You spend the whole film squirming around, moving back and forward and side to side, but nothing works, nowhere in that seat you have to sit on is there a single spot that just works for all of you. It is something so basic and so everyday that most of us don’t……

Caught in a quandary

Posted on January 4, 2016 by livinginalimitedword

I decided that I had nothing to lose, I had what I needed here in the house and today, was as good a day, as any. Adam, of course, wasn’t so sure, he questioned, and double checked my knowledge of my drugs, then agreed it was a good idea. I thought that as I had enough drugs in the house, that it might be an idea, to run a test and for just 24 hours, to increase my slow release morphine. Last night and this morning, I have taken one extra 10 mg tablet. As I explained to Adam, I take 10 mg fast release boosters all the time, so a slow release tablet was going to affect me even less and, was perfectly safe. It’s kind of hard to know what, if anything that it might have done, as I had a bad nights sleep last night. Without a doubt, my pain levels are slightly lower, but I wouldn’t stand up and declare it’s a miracle, the pain is still too clearly there for my liking. The prolific numbness and pins and needles appear slightly less, so yes there is an improvement, what doesn’t fit was last night’s sleep.

Morphine is renowned for causing nightmares and vivid dreams. Between 9 pm and midnight last night, I had an odd vivid dream, I know that could be caused by anything, but when I was popping booster after booster a while ago, I had vivid dreams. When I forced myself, to cut them down, regardless of the pain levels, the dreams went away. Once more, I find myself unsure and without clear direction. I don’t have a big enough supply of spare tablets to keep testing for a few days, so I am left with that life long quandary, what to do for the best. Why does life have to be like this? Why can’t just for once, the choice be simple, straight forward and without problems? I have been living for months now, with my pain and sensations way above what any sane person would find acceptable, but I can’t find the answer to them. I am already on the two most common drugs prescribed for dealing with wild sensations, such as the ones I have. Gabapentin and Amitriptyline. Apparently, Amitriptyline is not effective above the dose I am already on, but it might be worth asking for the Gabapentin to be increased, as I’m not quite on the highest dosage.

It was in fact, one of the things that I discussed when I was at the pain clinic, but, wasn’t pursued at the time. I was in one of my stroppy confused states, and Adam wasn’t with me to assist. The Doctor managed to wind me up within minutes of my arrival, and as I got stressed, I became more and more confused, argumentative and desperate to escape. It started over my not having the memory to be able to tell him, when I last saw my Neurologist, then went rapidly downhill from there. Clearly, he had no understanding as to what MS does to the brain or the effect it has, on our ability to deal with situations we’re not comfortable in. Within two years of my diagnosis, they gathered the information to confirm that I have extensive brain damage. There was even then, clear signs that I had frontal lobe damage and it was causing emotional instability, especially when combined with anything to do with my memory, it is a bit like living with attention deficit disorder. Hence my inability to now deal with change or people I don’t know, the reason that Adam is now always my link to the outside world. In some ways, I wish that meeting had been filmed. It was a perfect example of my brain, spinning out of control and leaving me, far, far behind it. All that aside, an increase in my Gabapentin, might just be the answer I’m looking for and clearly worth discussing with my GP.

On New Years day, just as I did on Christmas Day, I spent the whole day drinking bucks fizz. It took me from when I got up, right through to the evening to drink an entire bottle of Cava, as Adam doesn’t touch alcohol at all these days. I know, before anyone says anything, that alcohol isn’t the answer to pain or anything else. Yet the combination of a booster pill, both morning and afternoon, with the steady, slowly drunk diluted wine, worked wonders for me. It was a bit like stepping back in time, as the closest I can put it, is to say that I felt as I did about six years ago. On New Years Day, after days of planning, I even managed to do some cooking. So OK, it doesn’t take a genius to cook scrambled egg, and I did drop one whole unopened egg on the floor, but I did it. I also cooked the steak, new potatoes, mushrooms, cauliflower, broccoli and white sauce, later in the day. All of which remained where it was meant to be. I haven’t even attempted to do such a thing for a really long time, and to make it, even more, surprising, I did it all from my wheelchair. Yes, I was left tired, but I enjoyed it. My self-medication got me through two days of activity, that would normally leave me in incredible pain, exhausted and unable to function, I was only half way there. I don’t know if there is some kind of answer hidden in all that, something that might help me in the future, but it did make a difference, one that anyone would have been able to see. There is no way that I could do it again today, as today, I am still paying for it.

Last night, I was back to my normal self, I went to the kitchen, to do nothing more than open a few salad pots. Once I had juggled them out of the fridge and picked them back up off the floor, I then placed them on my lap, so I could wheel them to the counter. As my lap had a clear slope and was covered in velvet, why I thought they would stay there, I have no idea. Of course, they didn’t, I had to pick them up for a second time. Once safely positioned where no more accidents could take place, on a nice level surface, I started to open them all. First two, went fine, the third, landed up on the floor, this time without its container, it was still in my hand, the tomatoes, mozzarella and olive oil were all over the place, including over me. Nothing annoys me quite so much as wasted food, especially, when I had splashed out on what was supposed to be the last treat of the holiday season. I had to call Adam to rescue me this time, there was no way I could clean it all up, as I couldn’t even move my chair, without squashing mozzarella balls into the floor. My growing exhaustion was beginning to show, no matter how determined I was to keep going, my body was screaming stop, I had to leave Adam to complete what was supposed to be dinner before I ruined it all.

That is life with chronic illness, one day, you can appear almost normal, the next, you’re can appear totally useless. I know appearances have almost nothing to do with anything, but when you can pull something off, in front of those who matter to you, well you feel good.The things that suddenly become enjoyable and noteworthy when you are ill, are often the simplest of things. I know that most 11-year-olds could have done what I did on New Years Day, yet I am still left feeling proud, for doing what once I could have done without thought. Life takes on a whole new perspective, we become proud of doing almost nothing. Excited, about what most see as a chore and elated, despite getting those tiny things wrong, well it was only an egg. But then yesterday, a simple carton totally defeated me, not once, but over and over again. This world we live in is truly measured by things that make little, or no sense at all.

Please read my blog from 2 years ago today – 04/01/2014 – Getting to me and you

It appears I am having one of my do anything else I can find to do rather than what I should be doing. I woke early this morning, just before 6 am in pain and bursting for the loo, the second was easily…..

Facing the truth

Posted on November 14, 2014 by livinginalimitedword

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……

Who am I

Posted on October 20, 2014 by livinginalimitedword

Unbelievably I am still locked out of my Twitter account, despite contacting their support team nearly 24 hrs ago. On the good side although I can’t interact with my followers or return the follow of my new followers, I am still able to send out everything through the scheduler, so to the majority it will look just the same as usual with none of my normal content missing, but I hate not being able to not interact even by clicking the “favourite” button. Despite getting wound up about it for the first half hour, I then just told myself there was nothing I can do but wait and wait is what I have done, plus send another email to them this morning to let them know it still isn’t working.

I was supposed to be at the dental hospital this morning, but for once, one of my minor wishes has come true. Thursday morning was the last time I had any pus on the back of my throat when I woke up, after that it was dry, there was still a tiny white dot there on Thursday but the swelling was going down and things did look better. Yesterday afternoon, I declared the ‘Thing’ dead! Two days of nothing bad happening and the fact that although I can still feel some tiny lumps, scar tissue, they are actually so small that I can’t actually see them. I decided that I was going to look really stupid turning up to show them nothing and that the best thing to do was just cancel the appointment and the ambulance. I actually cancelled that yesterday, as I expected with it being a Sunday I simply got an answer machine and a load of buttons to push just to get there. Adam was here and he said that it was the same when he booked it, clearly it is a new system that has been set up in the 18 months since I last used it, but I can’t help thinking that it is a really bad thing. I know from my job, as I was responsible for the programming of the switch, that the use of these selection menus is great for call centres as it means people get to the right person and the time being spent passing customers around it reduces most customers stress levels, especially useful with it is someone who wants customer services. Where it falls down is with the elderly, many find them difficult to listen too, due to lack of concentration and poor hearing, they also are inclined to panic about hitting the wrong button, then do. The patients transport service is set up to take people to appointments who are unable to get there any other way, like me, I need a stair-climber to get down to street level and in some places to get me into the building where my appointment is. The majority of their passengers are the elderly, the very people who find the whole thing too difficult, I have to say that my concentration problems does at times mean I find them just too difficult and hang up, there could all too easily fall through the net and not attend the appointments they need to.

Our phone just rang, I was shocked to see the display saying it was my doctor calling, the hospital had phoned him as I had cancelled the appointment, they seem to have decided between themselves that I need to be seen. He put it along the line that since I hadn’t been to a dentist since I have been housebound, that it might be a good idea to at least go for a dental check-up, I did feel rather ganged-up upon, so I have agreed to go but it needs to be in a couple of weeks time so that we can make proper arrangement with Adams work and so on, rather than this rushed last minute affair. I guess I should have just gone today, but I still think it will be a waste of everyone’s time as there is virtually nothing to see any longer, I do have to agree that I need my teeth seen to, as I have managed to break two in the last seven years and I know that one at least will land up being pulled as there isn’t much there for anyone to work on. I guess this weekend was doomed to be one of those things, just not going the way that I expect them to go.

It is one of the odd things that I have noticed since I have been ill, I no longer deal well in any way with being told what to do, even if it is done nicely. I know that could be for several reason, firstly and most likely due to the damage to my frontal lobe, that causes you to react to things in ways you would never have done before, it controls personality expression and our responses to any situation that might appear, along with our ability to make good decisions, as in not putting ourselves in danger. It is also the place where both our long and short-term memories are stored, well more lost than stored these days, it is our centre of reasoning and without all these things working correctly or not at all at times, it is easy to see why life is difficult. My sudden desire to start crying as I put the phone down, was clearly not in my control and it was also something I wouldn’t have even felt years ago. I suppose it could also be argued that it may well have been behind my cancelling the appointment as clearly neither my doctor or the hospital think it is a good idea not to go, they seem to think it needs to be seen, so was I making a bad decision?

The second reason is even simpler, I have lost so much control over my life, that anyone trying to get me to do something I don’t want to, feels like I am losing even more, control. As an adult we are expected to be in control of our own lives, not having others making decisions without our input, or our input being run over totally and ignored or manipulated. I suppose there could be a mix of all those things, but the result is a desperate need to understand why and what is happening. I can have all the facts laid out in front of me, just as I have laid them out for you and I can apply all the logic I want to situations like this, but it doesn’t change how I feel. When there are alien emotions and feelings, that you know are wrong without being able to put your finger on them, you do really feel like you are going mad, another part of loosing control.

I guess I have spent far too much of my time in the past few years trying to get to grips with the things that are happening to me mentally. It is nothing like the physical changes, those are easy to understand they are real, tangible and can be documented in ways others can understand. The loss of your own mind, your own abilities and capabilities, well they are so different and so fine that explaining them, is like trying to catch a bubble, I can see it, run my hand around it, but just as I touch it, it vanishes and I am left struggling to find the next word or sentence that anyone would make sense of in any way. Our minds are us, it’s a simple concept, one we all understand, but when parts of it fail us, then who are we? I haven’t vanished, physically I am still here, mentally there is less and less of me as a person, I am loosing me. I may be able to write, to reason and to sound like a person with everything intact, but the truth is, I am not who I once was and it’s scary being inside watching it happen with no way out or of putting on the brakes.

Please read my blog from 2 years ago today – 20/10/12 – Touching the floor

I was looking for something else when I came across this picture and it actually really shows just how I am feeling just now. It is all rather dark at the minute but this morning that crack in the clouds has appeared and I feel lighter in myself. I am not sure where the change came from but when I woke……

Lobe loss

Posted on June 20, 2014 by livinginalimitedword

I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly for hundreds of reasons, but another new support worker means yet again I am going to be sat here going over all the history and batty ideas that I have had from the previous ones. I have expressed before several times that it is this sort of thing that makes me turn my back on the so-called help, that is an offer from the NHS, to date their help outside of medication has been anything but helpful. I used to phone the doctors and tell them not to come out and see me, that if I wanted anything I would call, but that caused a wall which meant when I did need help it was harder to get, so once a year every year, I have to go with it. I know what it is that annoys me and that is their insistence they will be able to help when they come through the door, followed by an hour later them leaving having discovered, once again, that I have everything covered. This is also typical, I have 2 weeks to wait for this visit and here I am already getting agitated by it.

I know this is all part of the damage I have in my brain, that the damage done means I can’t deal with anything outside the constant calmness of the life I normally lead. One letter, one change and I am getting uptight. I managed last night to put the whole thing to one side and ignore it as I knew that Adam needed my attention, he had an interview for a position in the hospital that he really wants, but he is convinced that he won’t get. We spent most of the first half of the evening with him saying there was nothing to talk about, but then throwing in something else that happened when he was there. He too has been agitated all week, building himself up for it, as he hasn’t like many people been to an interview for years. Last night he didn’t need me being wound up about something that isn’t going to happen for days. I let myself be absorbed into his needs, then the TV and distracted myself fully until this morning, I think I had only been up minutes when I found my mind was there tied up and winding the rest of me up even further. How do you deal with a brain that can turn nothing into a major event, that reacts to the minutiae as though it is catastrophic?

These are the things that if you aren’t living them, in fact even if you are, that just don’t make sense and finding a way to explain it which is understandable is almost impossible. I am reacting physically as though the world is ending, my muscles are tensed and my mind is racing without barriers and without true direction, just as you would if you had just stepped out of a car after a minor accident. Adrenaline is flying around me looking for the reason it has been called on for, but finding nothing, that just triggers more. I am stuck on a ferris wheel running at double speed and each time I reach the top, there is an uncontrolled drop before it pulls itself back to the top again. I think this is the worst I have been for a very long time, in fact, I think it was the last hospital visit I went to last year, but it wasn’t as bad as this. Now that is either due to one of two things, the damage in my brain has been getting worse, or the fact life has been quite and controlled for a while, that this small thing has triggered what was just waiting to happen. I would like to think it is the second, but I fear it is the first.

Being out of control is something I will never get used to, I was always the one who remained level-headed and found the solutions to things, I didn’t panic, I just got on with whatever was happening and I got through it. To find at the age of 53 I have become someone who can’t open a letter without it sending me nuts, is to me unexplainable. I know the technical reason, that I don’t need to have explained to me again, my brain has become confused with it connections, some are now missing others have built new ones, but kind of got it wrong, it triggers unnecessary reactions to stupid things, I get that. What I can’t get is if I know it is happening, then why can’t I pull myself back into coping with it, as I used to when it first started happening? I am sitting here at this very second with fear running through me, I can write all this, I can be logical about it, but I can’t stop it, it has control over me. Distraction, worked last night, but right now, it is of no use what so ever. Maybe writing about it is making it worse, that is always a possibility, but if I don’t write about it, I am failing in what I set out to do, it has to here for those who might also feel this way and have no understanding, or worse still, feel totally alone as though no one could have possibly been here but them. Trust me being alone in something like this is not nice, I know because I still remember how it felt before I got the diagnosis of what was happening after 2 years of tests.

Doctors telling you why something is the way it is helps to a small degree, but not when that thing is actually going on. Logic doesn’t work when it comes to brains, especially a logic that is as cold as I felt it was when they told me the results. I had to go to see a specialist and go through a range of memory and cognitive tests, the first round of them didn’t even get me a letter to tell me how I had done, I had to wait months until I once again saw my Neurologist, he told me then that the results weren’t too bad but there were signs of some issues and he wanted me to go through the test again, twice, six months apart. I did and I waited for them, the results showed that I have and was still increasing damage to my frontal lobes, which is the explanation for my memory problems, but it is also the reason why I get out of control like this. My ability to control my reactions to things has changed, I am getting less and less able to make clear thought through decisions and I know I have a growing inability to regulate reactions. Both fear and tears happen without any reasons that I can see, but being told all this, rereading it as I just did because I couldn’t remember some details, doesn’t help when you are living it and no one has ever been able to help me get any control back.

If the all the physical sides of MS weren’t enough to stop me from working, I know without a doubt that I would no longer be able to work under pressure around other people, I would be sacked very quickly. In the last 4 or 5 years, I know I have lost my ability to be with strangers because I know it takes nothing to set me off either into crying or to get angry. Adam knows how to handle me, how to keep me calm and how to keep my world constant, I can only hope that continues, but I do fear that the time will come when he can’t. For all of us as we age there is always that fear that our brains will be the part of us that will let us down, I have been living with it slowly happening now for a what feels like a long time and I have found nothing that makes any of it any easier for me, all I can do is to keep documenting it as it all happens.

Please read my blog from 2 years ago today – 20/6/12 – New Problem?

I ended my post yesterday in a rather hurried and odd fashion which I apologise for, I have to say though I spent the rest of yesterday in that odd place. All evening I was still trying to work out why suddenly I was feeling and using the word normal in connection with something that is clearly not normal in anyones life. I know that it may sound like a really odd thing to get hung up on but it…..