Dumbstruck

The world and it’s dog, think of MS as a condition that affects muscles, both in pain but mainly weakness. They see us as future cripples, the people sat in wheelchairs, rarely seen without a carer and simply waiting for the day to pass. After all what value are we to the world, the cripples who can no longer work. Some look at us with pity, but most don’t look at us at all. We are invisible, long before we disappear completely by becoming housebound. I can say that, because if someone had asked me when I was 20, that is probably roughly what I would have said. Just as I saw spina bifida as people wearing calipers until my son was born with it and then died 12 days later. None of us really know what any chronic condition or disability is like until it somehow touches us. Even now, I couldn’t tell you if my Jeffery felt pain or felt anything at all, I just had to take the word of the doctors, that he was at peace in his misshaped body.

MS isn’t just weak muscles and pain, it is so much more. All you need to do is read my blog from its start to today, and you will see that there isn’t a single part of me that it doesn’t affect. Although, I do have to add that what you would read is my version of PRMS, one of five forms that MS took until recently, now there are only four. I discovered yesterday while reading on line that PRMS no longer exists, we have been absorbed into PPMS, although how I’m not sure. I’ve read the description often, and I quite honestly don’t fit. Yet, who am I to argue with the great and the good of the medical world, I am, after all, only the person who lives with it. In fact, I’ve lived with it now for over 30 years, but if you were diagnosed with RRMS, SPMS, PPMS or even benign MS tomorrow, I couldn’t tell you what lies ahead, because I haven’t lived your life. It’s not just MS that this is true of, whatever the condition, all of us would find our own quirks, symptoms, and difficulties, that’s just life though, as none of us live the same one in the same body.

At times people have asked me what is the worst thing about the conditions that I have. Yes, it is plural, I like the majority of people with a chronic condition have a collection of them. Why they travel in gangs, I can’t tell you the medical reasons, but I’d make a guess that once our bodies are weak, we are susceptible to other developing. As for the worst part of it all, well, it depends on what day and at what time you ask me. In the mornings, I am most likely to say that it’s the pain and by the evening the fatigue, catch me in the middle of a brain fog, and I’d most likely look at you stupidly and say very little of any sense. Chronic illness is a minefield filled with monsters, just waiting to take over from each other when the others have got fed up of playing with you. But if you have one, you already know this.

Today, though, my physical monsters are just treading water, the pain levels are set at normal and my fatigue just slightly higher, today, it’s the monster in my brain that is having the most fun. I have started and not finished a dozen things already, and my poor browser, has been straining under the number of web pages that I have opened, most I have little idea why. Concentration is little more than a distant memory. I have even stopped this post more times than you would believe, returning and having to read my earlier entries, and then sitting here trying to work out where I thought it was going. Even now, I’m not sure. Mind you, that’s nothing that unusual. For some reason, today seemed like the perfect day to change broadband suppliers. I had been thinking about it for a while, but out of the blue, I found myself actually doing it. So hopefully, as of the middle of next month, I will be flying on high-speed fiber and miles from the company who couldn’t even answer their phone without getting me angry and leaving me in tears. Yes, I will double check all that I’ve done when my own brain has returned.

I know that I am being rather flippant today, that is quite often the result of living in a muddle, as if you don’t take it on the light side, you’d drive yourself mad, if, I’m not already. Seriously, though, unless you are living with a brain that has been affected by something like MS, you don’t have a clue just how frustrating and depressing the whole thing is. I know that I am still managing to type out word after word and that I will appear to many as not having the slightest problem, but take my word for it, my brain is a mess. All of those wonderful tricks or the gizmo’s that are supposed to aid me in my everyday life, to me, are totally useless. It doesn’t matter what it is, my brain finds a way of turning it into an ignorable annoyance, something that doesn’t apply to me, or at least not at the moment it is trying desperately to put me back on track. It doesn’t matter if it’s a post-it note, a list, an alarm or even something huge in the middle of my computer screen, I can ignore it and totally forget ever even seeing it. Life with my brain is now one long smooth line, uninterrupted by all those annoying little things, like eating, washing or taking my meds. Well, it would be, if I hadn’t long ago started using Adams brain to fill in what I missed and of course my carers now keep me straight as well. Yet, I’m lucid and intelligent, well I think I was once, and might be occasionally now, as long as I don’t engage my brain, it will trip me up in seconds, if I let it and even when I don’t.

There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this amazing way they know, of getting things done and never forgetting again. I learned long ago that I wasn’t only invisible, I was also mute as what I have said, was clearly unheard. Until you have spent an entire day, with my brain, in control of your life, you won’t understand, any more than you can understand the effects that pain has me, outside of the pain itself. When your brain is being eaten alive by lesions, nothing is as simple as it was just a week ago, far less a year ago. Unlike my body that now sits in a wheelchair, there is nothing visible that supports my brain. I can’t show it to you, all I can do is tell you, but then, of course, I forgot, I’m mute.

Please read my blog from 2 years ago today – 01/08/2014 – A spark of truth

I am waiting for the phone to ring, Teressa and John are due to come and see us today the first time we have seen each other since Christmas. To be far I doubt I will get a call before 12, after all, they are on holiday and as she is staying with her brother, I know last night will have included more alcohol than is …..

Which, what or way next

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

 

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

 

Beyond black and white

I was at the hospital yesterday, the last of a list of appointments that I knew were ahead of me, back in January. Yes, it has taken that long to get an appointment, and it was the longest appointment I have ever had. Nothing to do with getting there or back, it honestly was the appointment. Both Adam and I were so sure that it was going to be the perfect trip. The appointment was nice and early, and that usually meant we were seen and home within a couple of hours, so we left here light-hearted, even though we were without a doubt late for the allocated slot.

We arrived in the waiting room at 9:40, twenty minutes late, but we were whisked straight into a consultant room. The door shut and we expected it to be opened in minutes by Dr. Hair. It was, but just long enough for him to put his head around it and tell us that he wanted one of his colleges to see us, to see if he might be able to come up with something he hadn’t thought of when he saw us 18 months ago. It was Dr, Hair, who put me on to psyllium, and a range of other things that we tried without much luck, and told me to throw away all the different laxatives, that my GP had me on. Since we saw him, I have had psyllium in my daily diet and he was totally right, it does help. The actual production and getting rid of stools is much smoother, but it hasn’t fixed the problem that I have with pain throughout my intestine. Since that visit, my gallstones have also flared up many times, and the combination of pains has made me far more than just miserable at times. Not even taking my booster dose of 10mg of Morphine always deals with the pain, it just keeps coming.

We sat there waiting, with the odd head appearing every now and then, but none of them coming into the room. One of them, eventually told us, that the doctor we were waiting for, was coming across from the Sothern General, to the Victoria, to see us. It is a good half hour drive between the two, so we eventually understood why we were waiting. It was in fact, a full hour and fifteen minutes we were sat there before he arrived. I’m sorry, but his name escapes me now. He for once, though, had read my notes and had a good idea what he was faced with. I filled in what had been happening since and why I was once more sat there. For once, my intestine hadn’t done what it often does, emptied just prior the appointment, I had a full gut and the perfect condition for him to palpitate and examine. Then it was down to what he had to say. He totally agreed with what I believed, that the nerves to my guts are dead or dying. They can not and will not supply the messages to push things through me and it’s a case of it all packing in tightly until it lets go of a length from inside me, then slowly packing in again. The pain is from my intestine being overstretched. The occasions when I throw up is because they are quite simply, unable to move things in any other direction. So what to do about it.

We firstly discussed the option that I dread, a stoma. Both of us are in agreement, that as long as we can make them move at all, it is an option that I don’t really want. For me, it’s the physiologic issues of having a bag of poo, stuck to my side forever. For him, it is the medical complications that go along with such an operation, complications that he thinks for me would be vast. What I really want, is to get rid of some of the pain that I am plagued with, after all, that is why I was there. He explained that even if they did do that operation, it didn’t mean the pain would end, with there being so much damage done to my nerves, it might continue, gut’s or not. Then we went to my gallstones. I thought, one quick operation and it would be done, surely they could do that for me. He told us all the horrors that such an operation could bring with it. According to him, it isn’t the quick operation that I had in mind. Once he went through all the nightmares he could think of, he added in, “and then, it is if the anesthetist is willing to put me under an anesthetic, something I’m not sure they would, with your current medical state.” I was sat there feeling totally deflated and feeling as though I was as always, stuck alone dealing with it all.

There was only one question I had to all he was telling me, “Is there nothing you can do without surgery?” It was then that he told me that there is a drug they sometimes use to dissolve gallstones, it’s not always wildly successful, and they have to be sure that the stones aren’t calcified, but yes, we could try that. As for my bowels, well the only thing he came up with, is trying to stimulate my bowels to let go without storing as they do. To do that, I will require the district Nurse to visit every couple of days and give me an enema. Yes, that was tried four years ago, but only for a couple of weeks, not long enough to see if it will actually work. One x-ray of my gallstones later, and a couple of cigarettes and to our total shock, we were on our way home again.

So here I am, with the facts all in my head and the final confirmation from a doctor that my body is failing step by step. There isn’t a single part of me that this damn illness hasn’t worked on destroying. Follow that Vagal nerve and it’s branching and you have the full picture of what it’s playing with, and what it’s destroying. People see MS as a condition that affects limbs and minds, no one really talks about how it also destroys everything inside you as well. I believe, that all I have left that it hasn’t had a go at yet, is my liver and kidneys, but it might have, I just don’t know. There is nothing they are willing to do for me right now, which actually means, there is nothing they are willing to do, full stop. As my health is only ever going to get worse, well this is it. They will tinker at the edges, play about with those odd possibilities, but as for the major stuff goes, forget it. The biggest answer that I had from them, was to take more Morphine to deal with the pain. I guess that is the story of my future, just take more Morphine until something fails totally and it’s over. I guess that I sort of knew that before I went there, but having it said to you so clearly, well, it puts a new edge on it. I still have much to think about, not least that I will have to have someone else coming into my home, to “care”for me, because I can’t. I knew a few months ago that life was changing, I just didn’t realise by how much.

 

Please read my blog from 2 years ago today – 16/06/2014 – Setting Summer out

Summer is beginning to appear, yesterday for the first time I was aware of a true change in the temperature. Clearly it has been rising for a while, otherwise, I would still have the central heating on, but yesterday the house felt just that bit too warm and I actually put my embarrassment to one side and ditched my dressing gown, I haven’t even bothered to put it on today. Now I know most people……

Through hell and back

I hope you are sitting comfortably, as the tale I have to tell, has nothing comfortable about it. A simple hospital visit, that turned into a total nightmare. It should have been straightforward, the ambulance should arrive with plenty of time to take us to the hospital, see the doctor and another ambulance to take us home again. It should have been that easy, but it was nothing like that at all.

My appointment was for 11:15, but as always, we had no idea other than what we had been told by ambulance control, as to the when the ambulance would actually arrive. They as always had told Adam that it would be here, anytime after 8:30 am, the time my alarm would normally wake me for the day. So yesterday, my alarm was reset, for 6:45, a somewhat ungodly hour that I wasn’t looking forward to at all. For me, an hour and three-quarters, is a lot of sleep to lose, but to be ready, what other choice did I have. As 8:30 arrived, both of us were now ready and there was nothing more to do, other than wait for the doorbell to ring. I went about my normal morning routine and found myself by 10 am, playing games just to fill in the time. Adam was pacing about, looking out the window in hope of seeing it approaching then sitting again for a few minutes until he thought he heard something. That is a game that I have given up on long ago, but it is a character that I recognise in myself from years ago.

It was 10:40 when the buzzer rang and the crew started their way up the sandstone stairs to our flat. Even before Adam had our door fully unlocked and the storm doors held open for them, I could hear the noise of the stairclimber. As much as I hate those things, I have to some extent become used to them, but the racket they make is unmistakable. I had turned off the computer and had my coat on and sat in my wheelchair when the noise in the hallway changed. I even said to Adam could they have made more noise if they tired, as their voices were echoing around the stairwell. Then there was silence. Just for a few seconds, before their voices appeared again, but without the unmistakable noise of the climber. There was the odd sound of it trying to move, but the sound only lasted seconds, before we were back to the over loud attendants. I headed to the door, intrigued by this point as to what was going on.

I arrived there at about the same instance as one of the attendants. The climber had broken down half way up the stairs, they couldn’t get the chair up nor down the stairs and were going to have to call into control for another two-man crew, so they could carry me down, or for another climber. We were just going to have to wait and see what would happen. As 11:15 arrived and went, Adam phoned the hospital to say we would be late. He returned to the living room, to let me know that it wasn’t a problem, we would be seen that day, either as soon as we got there, or we would be added to the afternoon list. Not perfect, but at least we were going to be seen. As luck would have it, the second crew arrived quite promptly and were made it to the hospital, before 12. During the trip, we were told that the stairclimber had just returned into service, after spending the last 7 months in Germany being repaired. The crew were hopeful, though, that it just needed a properly charged battery.True to their word we were seen promptly and were back at the ambulance station within the hospital, to wait for our return trip by twenty past.

We were with the consultant for about 15 minutes, discussing what had happened in the past six months. To be honest, I didn’t have a great deal to report, as my chest has been really quite good, just the odd difficult point which he put my mind at rest about, in fact, things have been so good that he suggested that we didn’t need to return, unless I was having problems. With Adam working in the same hospital, he can go and talk to them at any time if needed, so we are in a different position from many. Right to the point that he has said he can just drop of a sputum sample without even talking to them, should I be having new problems. It was at the point where we should have probably been leaving when I suddenly remembered that I had forgotten to bring my DNR with me, as I wanted it added on to my hospital records so that no mistakes could be made in the future. I had to once again show that I wasn’t depressed and that I knew what it meant before he agreed. But he congratulated me on my ability to have looked forwards and to have made this decision so that it didn’t have to fall on Adam in the future.

We were about to leave when he once again gave me his standard warning about not being able to give me oxygen at home if I continued to smoke. I instantly pulled him up on it, and told him that I had read Scottish government policy that said the total opposite. As I went further in quoting some sections, he showed quite clearly, that he too had read it. Although not word for word, he too started to site parts of the policy document, both Adam and I knew then, it had been nothing but a hollow threat, and we had caught him out. Adam and I chatted about it on the way to the station room, I have to admit, that was quite smug about it actually. I seem to be growing stronger in my old age, as a few years ago, just because of his position in life, I wouldn’t have questioned him. I used to be very much part of the school of thought, as in “who am I to question someone more learned than myself”.

We had been outside for a cigarette and had been waiting for well over an hour for our transport home, when the women who runs the system within the hospital, decided to phone and find out what was happening. We were told they would be there in 20 minutes, a time that came and went. She called again and while on the call, she put it onto speaker phone, ambulance control had just realised they needed another stair climber to get me home. It was then that I started to get uptight and reminded Adam about what I had said, just a couple of days before. I had had the strangest feeling that the whole day was going to be a disaster, one that was going to push me to the limits. Control ordered another ambulance to come for us, we had little faith in their timing of half an hour and it too came and went, but this time for just 5 minutes.

When we arrived back here, well clearly, I thought that was it, it wasn’t. We were half way up the third flight of stairs when this stairclimber also broke down, this time, with me in it. I was in this half sitting, half lying down position and there was no way of getting me up or down, it was totally dead. Adam had run up the stair ahead of us, so he could get the doors open, it took him a couple of minutes to realise the noise in the hallway had changed and to return down the stairs to be with me. At first, I was fine, but when they called in and were told that there were no other batteries to swap over with and that carrying me was the only option, that I started to get wound up. I also heard them say, that not even a six-man crew could lift me and the chair, the whole thing was too heavy and didn’t have anything to hold onto, to lift it by. I was totally stuck. The tears started and my entire body was shaking as different nerves started to react to my distress. They did their best to calm me down and to reassure me that I was perfectly safe where I was, but trust me, it’s a position you don’t feel safe in.

The crew were great and didn’t take the word of their control. They knew where there was a battery and they called the guy who had it. It was on board another ambulance which was at the Southern General, half an hour from our home. I was just going to have to try and calm down and accept what was happening. I had a cigarette and Adam brought me a drink and between the three of them, the took me through several fits of tears and tremors. Adam even took over holding the bottom of the chair so that I could see him with ease, which actually helped a lot. No matter how well trained these crews are, it was being able to see Adam and knowing he was holding the weight at the bottom of the chair, gave me more trust in the fact I was safe.

The second battery arrived and switched them over. At last, we were on the move again. This is where it gets beyond a joke, half way up the final flight, it too broke down. I was once more stranded. It was the first time that luck came into this whole things. As they are apparently designed to do, there was enough power to go downstairs, but not up, so we at least could return to the landing, where we waited for assistance again. Another 15 minutes of waiting and yet another crew arrived, this time, I changed into the chair they can carry, and that was how I eventually arrived home. I know this post is long, but it was a long day and one that that needed to be written about, as without a doubt, it is a mirror to the state of NHS. At 4 pm yesterday, the time I arrived back in my home, there wasn’t a single working stair climber in the entirety of Glasgow. Nor will there be today, as those batteries take a full 24 hours to charge and no, they don’t have spare ones charging all the time.

By bedtime last night, I still had that feeling that I could burst into tears any second, I was right on the edge and I had no idea how to get rid of it. I have to admit, that even writing this, has made me feel that way again. I am sure that you also understand why it has taken till now for me to make a post at all, something, I thought I might have managed to write when I was home yesterday. The bad news is, that I once again have to put my life in the hands of the ambulance service next week. I just hope it is nothing like yesterday.

Please read my blog from 2 years ago today – 25/05/2014 – Facing the facts

I woke at midnight, I wasn’t sure the second I woke what was wrong I just knew something was and that it had broken my sleep abruptly. Then it happened again, I can say that as the second it did I knew that was it, that was what had disturbed me, something really hard to do these days. My lower legs both of them were in pain and not a spasm, this was different almost as though they were causing me pain just because they could. I lay there for a few seconds……

A day to delete

I don’t know what it is about Sundays, but without fail, they are always days when I seem to land up chasing the clock. I don’t think it was made any better yesterday by the fact that the clock went forwards last night, for daylight saving time. No, I didn’t sleep an extra hour by forgetting to change the alarm clock, although yes, we did forget, somehow I woke at a time that meant I was just 15 minutes late. When I woke, I actually thought that I was starting my day early and that, I think, is where my trouble began. As I have said before, time is now a concept that I find hard to work with. Seeing the time saying 7:45 am, and that the bathroom clock agreed with it, I believed that to be the correct time, confusion started once I reached the living room and turned on my PC, it told me that it was 8:58 am. That was something my brain just couldn’t handle and I went into a total spin. As I said, Sundays are odd for me normally, but at that point I was already in the midst of a mental bedlam. I was desperately checking everything, all the clocks agreed with my alarm, but my PC and the TV said differently. Once my brain flips, logic has nothing to do with reality, and anyway reality is in some other dimension. I knew the time was due to be changed, but I just couldn’t get to grips with what was happening.

Once bedlam appears, it is incredibly hard to escape it. Even two hours later, I was still double checking everything, the result being that I just kept working myself into a frenzy and time, the real time was ticking away from me. Before I knew it, I was an hour behind on my daily routine and struggling with everything that I was trying to complete. I knew it really didn’t matter and that in the bigger scale of life, it was totally irrelevant, but telling my brain that, just wasn’t happening. The tiniest things can set off a train of reaction just like this, yesterday it was time, the one before was caused by opening a drawer in the kitchen to find the spoons were in the wrong order. Anything that is not as it should be, or is unfathomable at that second, can totally destroy my entire day. Once triggered, even if I correct the problem, it isn’t enough, I will without a doubt, double check that it is still correct the next time I am passing that way. On the surface, I know that some will think that it is a form of OCD, but it’s not. As long as I think that everything is where it should be, then my world is fine. I don’t go looking for things that are wrong, but if I find them, well then, they have to be fixed.

It took until after lunchtime for me to settle to the time issue. I was actually having lunch when I worked it out the root of my unsettled state. It wasn’t so much that the time had changed, as the fact that the clocks hadn’t been. I knew that in every single room of the flat, there was something wrong and as they are mainly wall clocks, I couldn’t fix them. As soon as Adam did, I settled again and normality returned. I had still lost over an hour, but hey, it was Sunday, I always land up running behind on a Sunday, so nothing new there then.

I can’t help wondering if there is some kind of lesion activity going on at the moment. There are just so many things happening altogether, which yes I’ve had issues with on and off, but they all feel more on than off right now. I am very aware of feeling distressed over virtually nothing, my concentration levels are low and my frustration rate is high over everything, my tremors have been going mad and the list just goes on. Just read the last three weeks posts, and I’m sure they are all there. Annoyingly, it is now also managing to get in the way of one of the things I enjoy the most, this, writing.

I used to write a post in under an hour, now, it can take more than double that, this one, so far has taken nearly three. I can’t hold my train of thought and I have to keep rereading, correcting and at times, deleting large sections and starting again. Add in fingers that somehow find keys that weren’t intended, a new ability to make up nonexistent words and the whole thing is taking longer and longer. I’m sure many have noticed that most of my posts have been shorter than they used to be. I would literally do nothing else if I were to achieve my once standard 7000 character. The normality that I desperately need is now being pulled apart, by the very brain that requires it. The normal flow of life is frequently severely disrupted. And for those reasons, I am going to have to stop writing today, before I do something totally nutty, like deleting the whole thing.

 

Please read my blog from 2 years ago today – 28/03/2014 – The future 

I woke this morning with the alarm sounding rather than pain anywhere, I’m not saying that the pain has gone, but, at least, it is at the level I normally live with rather than ripping me into shreds. I am sure that it is just what you would call normal, but I worry that days like yesterday are a window into my future, I know that the doctors would give me stronger painkillers, but that somehow doesn’t make it seem any brighter, just knowing that my body would ever have to be producing that level of pain somehow doesn’t seem to lie easy on me. I know it’s pointless worrying, or even thinking about something that I won’t be aware of, but it’s my body and me that will be living in the knowledge of reality. It is so often the fear of the future that gets to you, even when you know that there will be ways round thing, ways of making life bearable…..