The missing link

Would you believe that I still can’t make up my mind about my meds? I didn’t call the Doctor, I decided that I had to be a grownup and make a decision for myself. So here we go, this is my decision-making process, a peek inside what’s going on in my head, I just hope we find something. The starting point has to be to lay down the reasons and options. This whole thing is about getting my pain levels back under control. Over the last few months, they have been rising along with the increase of all the sensations that my body creates. They are inclined to trigger each other and I land up in these maddening spirals, which escaping take a rather large mallet, it’s just finding the right one. I have talked about extensively in the last month or so, about how I am being driven to the edges of distraction by a body that is out of control. If you don’t know the details, well it’s all written here, you just need to go back a couple of weeks to get right up to date.

It doesn’t take a genius to work out that living in constant pain, above the level where you are comfortable, isn’t nice. There are no painkillers that totally remove the pain, but to date, a combination of Morphine, Gabapentin and Amitriptyline have done the job not too badly. Both the Gabapentin and Amitriptyline are at their peaks, there isn’t even any wiggle room left there. Which leaves the Morphine, technically, that can climb and climb, up to unbelievably high levels and my Doctor is more than willing to raise it. It’s me who has the problem, with that.

I have this inbuilt fear of raising it any quicker than is absolutely and I do mean absolutely necessary. It’s a fear I have had from the very first time they mentioned the word. To me, Morphine is the drug of last resort, it is only used when everything else, has failed, and there is no hope left. After all, they don’t hand out Morphine for a sprained ankle, it is a drug that has a finality about it, if you like, it is the drug of the dying. I have been on it now for about 8 years, possibly 9, I’m not sure. What I do know, is that it scared the hell out of me, I took that first tablet expecting to feel drugged and out of control. What actually happened, was my pain almost vanished, other than that, nothing. I wasn’t having hallucinations or any, of the other things that for some reason I expected to. I was pleasantly surprised, but still hesitant about that name and the pictures it conjured up. MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are controllable. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years

MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are in my control. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years is too far off to be able to get any real answers. Morphine scares me because, it has and always will spell out the end of life, the end of my life.

The Duloxetine was prescribed to replace the Amitriptyline in the hope that it would offer a higher pain relief. I would have to take it for about three weeks to see if it does or it doesn’t, but it’s doing to me all the things that I fear about Morphine, which is beyond ironic. I have now taken four 30mg tablets, over four days, the first was the worse and each one since, has been slightly less reactive to the previous. I am still feeling disconnected, sensations are still heightened and I don’t feel right, which I really don’t like. On Thursday, I am supposed to double that to 60mg, right now, that terrifies me, as it also means the end of the Amitriptyline. I won’t miss the dry mouth, but when it is gone, will this new drug then turn out to be useless, will I be spaced out, terrified and in more pain? The only way to find out, is to do it, but is it worth it? I could just quite simply take the uplift in the Morphine and tell myself to stop being stupid.

This is the problem of owning a brain, if we didn’t have one, life would be simple, well maybe not, but you get my point. My problem isn’t physical, it is literally all in my head. I might know exactly where I am, I might have accepted exactly what that means, but it appears, that somewhere in this stupid head, I’m just not ready to act on it. Yes, I can throw the drugs down my throat, I can sit here day after day content in my day and my life, but I’ve been avoiding those bits I just don’t like the sound of. I’ve been giving them a rather large body swerve. The odd thing is, our care actually allows us to do just that. Look it up, “symptomatic treatment” and “palliative care” are exactly the same thing. No one ever said that all they could offer me was “palliative care” because, they know the mental connections that phrase would light up. No they said, there was nothing else they could offer, other than “symptomatic treatment”. Call it what they want, I don’t think that I really have a choice here, I want the pain back under control and I don’t want to feel like I do. The truth is, that either way, Duloxetine or Morphine, the treatment is called the same. My body has made the decision, I don’t think it could have made its opinion of Duloxetine any clearer, it not for me. Tomorrow, I will call the doctor with my decision and go with the increased Morphine, at least, I know where I am with that drug, unlike now, where I’m fighting to just know who I am.

Please read my blog from 2 years ago today – 12/01/2014 – A mind in free fall

I am coming to the conclusion that there are things in life that are simply designed to drive you mad, those things that one day work and the next don’t, are at the top of my list. The charger for my e-cig, isn’t working…..

 

 

 

The first, or the last?

My new tablets arrived yesterday evening, so I can tell you their name, at last, Duloxetine. I had done as I always do, read nothing that came with it, other than the starting dose, just to check I had, at least, got that fixed in my head. My first weeks dose is low, as I am taking just a 30 mg tablet, along with 10 ml of my Amitryptiline, a 50/50 dose to help with the expected withdrawal symptoms. I am more than aware of them, as my forgetfulness, that has lead to Adam being in charge of my meds, meant that I have felt them several times in the past. I admit, even though I am still to take a lowered dose, I was still truly concerned, of what might happen, far more than I was about the new tablet. Ask anyone, who has been as ill as I am, for as long as I have, and you will get the same story, life is one long round of trying different drugs. Personally, I can’t think of a single one that I have ever had an issue with, other than the seen as “minor side effect” that came with my Amitryptiline, an incredibly dry mouth. If the new tablet works only as well as the Amitryptiline, but, doesn’t give me a dry mouth, I will be happy. If it works better, I will be delighted.

I have to admit, I was truly hesitant at 8 pm when we headed into the kitchen so I could use my nebulizer, all my inhalers and finally swallow my array of tablets. If there is one thing I need, it’s my sleep, the thought of a disturbed night was filling me with dread, but like a lot of things in life, you just have to get on with it. By the point that they all should have kicked in, I felt nothing different in any way, and I started to relax, maybe, it wasn’t going to be as bad as I thought. Although, to be fair, withdrawal symptoms don’t normally appear for a couple of hours past the medication due time. When I stood up at 9 pm to go to bed, I suddenly realised that there was something wrong, I was totally unsteady on my feet and I felt drugged, spaced out and totally wired. Sitting in my wheelchair has rarely been more welcome, as there wasn’t the slightest doubt in my head, that I wouldn’t have made it to even the living room door, on my feet. I can’t think of anything I could compare it too, as not even the old fashioned premeds, you once got before an operation or the sleeping pills, I had years ago, ever made me feel that way. I was giddy, misty minded and, well, drugged. It was just how I thought, that Morphine would make me feel before I actually took it for the first time, when, I felt nothing. It was more than unpleasant, it was actually totally unsettling and bizarre. I didn’t say anything to Adam, as I knew that he would just worry, all I had to do was act normal, and get to my bed. Why is it when you want to act normal, you feel as though, you are doing anything but?

Once I had said good night to Adam, I tried to put in my ear plugs. I knew without a doubt that I had made a mess of it, but I felt so weird, that I just didn’t care. I got into bed and laid down, hoping that sleep would take over in seconds. It wasn’t until I was lying down that I became aware of feeling as though every sense in my body was heightened and more alive. I almost tingled with electricity, it wasn’t unpleasant, like the tingling caused by my MS, it was more an invigorating sensation, and not what I was looking for at that time of night. I took my mind off it by working my way through my relaxation system, which to my surprise, worked at super fast speed. All my muscles seemed incredibly relaxed before I had even started, which didn’t exactly go with how I was feeling, as I said it was weird. I have to admit that it wasn’t totally unpleasant, it was more unsettling if you know what I mean. Then slowly, everything started to shut down, as though I was diminishing in size, until, I was just my brain and my body didn’t exist, sleep followed. I can’t stress how unusual the whole thing was, I’ve never felt anything quite like it. The closest, well I know my memory isn’t the best these days, and I would need to stretch it back to the 70’s. when I like many teenagers, dabbled with acid. It was along the lines as a refined version of how that felt, except I slept.

I did wake during the night, just once, to go to the bathroom, which should have been easy and would have been, if not for the drug. As I was putting on my dressing gown, I fell over, luckily I landed on the bed, but as it had taken a huge amount of effort to stand in the first place, I wasn’t that amused. It took as much effort to find my feet again and to get into my chair. In my head, there was a thought spinning around, as to whether I should wake Adam to help me, or not. What if I fell in the bathroom? That wouldn’t be funny at all, or in the kitchen, when I eventually got there? Yes, I did still go for a cigarette, something just have to be done, no matter how you feel. Mind you, I didn’t smoke all of it as I couldn’t stop yawning and I was still feeling terrible. The pack had said it was a slow release drug, and it was, all this happened at 4 am. I didn’t wake Adam, I managed perfectly well by myself, but I was truly glad to be back in my bed. I lay there for a while trying to work out, if I was going to try this whole thing again that night, or just write it off as a truly bad idea. I didn’t make a decision then, as once more, I diminished, then vanished.

My head is much clearer this morning, but still not right. How do I feel about this drug, well it was only one night, that isn’t long enough to test anything and as it is night, not morning, does it matter, not really. Yes, I am going to take it again tonight, hopefully, it won’t be so dramatic. I clearly still have quite a bit of it in my system this morning, hopefully, my body will adjust over the hours and be ready for another dose tonight. I have to give it a decent shot, at least, all the way through this weekend, especially, as Adam is here to help me should I need it at any point, which I doubt that I will. No, it hasn’t stopped me feeling pigheaded. If I feel as bad on Monday morning, well I can talk to my Doctor and see what he says. Right now, I don’t have the slightest idea if it is doing what it is meant to or not, I won’t know that until, I have been on the full dose for a few days, so that answer, is at least 10 days away. On the good side, just cutting my Amitryptiline in half, has more than halved the dryness in my mouth. For someone who hasn’t known moister without stimulating it with food or drink, for 14 years, this alone is an amazing event. So much so, that if the two drugs turn out to be exactly the same at pain control, as long as I don’t have to spend my life feeling drugged, I will go with the Duloxetine.

You have to allow every new drug a chance, it’s all too easy to just take something once and dismiss it, Some drugs, especially those that fall into the category of antidepressants, even when not being used for that purpose, take time to get into your system, and time to work. This is just the first tablet, I can’t really judge anything on that basis, time will tell.

 

Please read my blog from 2 years ago today – 09/01/2014 – A choice over Morphine

The year is only 9 days old and I have already reached the point where I wouldn’t mind sleeping the rest of it through. Until today I have been doing fine and was managing to stay up to 9 pm each evening…..

 

Something’s, just make you smile

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying because I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour……

 

 

 

Condition blinkers

I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.

 

Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

I so need one

The thief of life is at it again. I am so lost and confused this week. I can’t even hold onto the day of the week, for more than a few minutes. It feels as though, I have spent the whole week checking the calendar, or double checking what I am doing and why. I can deal with pain, with spasms, all the different memory problems, with any of the medical symptoms of my gang of assailants, but frustration drives me up the wall. Yes, I know, that is the nature of frustration, but it’s just so frustrating. It doesn’t matter how many times, I stop, relax, then start again, it just reappears, which winds me up even more. This whole week has been that way. It doesn’t matter that I have had a good nights sleep. That I’m as close to rested as I get. That I’m happy and ready for another day. None of that matters when you can’t remember if this is Tuesday, Thursday or even the one in between, that I couldn’t remember the name of earlier. Frustration has already found its way in. My PRMS really has got this whole game of illness polished brighter than any diamond. It needs stress to thrive, all the stress that I have over the years strived to remove, item by item. I had taken it’s greatest triggers and smashed them into a fine powder. So what does it do, it removes even more of my memory, it truly is a devious and clever opponent, as frustration, creates it food source with ease.

Frustration and memory are the perfect combination. It’s rare for me to get frustrated by my body, well, occasionally, as yes I am human. But there is no competition between them, memory is the perfect trigger, and wins hands down. At times, it can be perfectly clear. Last night, I was watching “Eastenders” and I could with ease, remember small details, from an episode that I saw years ago. Two seconds later, I couldn’t remember the name of the character I was looking at, or their current storyline. How can one brain do that? How can it send me somewhere to do something, then decide to wipe all knowledge of why I moved at all? Why can it cut out huge sections of my own life, when I need them, just for them to be there later on? How can it steal my words from my mouth? Why doesn’t it tell me that I put lunch on to cook over an hour ago and that it’s now quietly burning? How can it leave me lost, confused and occasionally terrified, by the tiniest change in my own home? How can it be so contrary about why, what or when? How can it do all of these things and so much more? For someone who adores perfection and precision in everything, it is the cruellest trick my PRMS could have chosen, from the list of possibilities. But the cruellest bit, the bit that makes it frustrating, the fact I am 100% aware of it doing them all.

I don’t know just what has upset me this week. Things had actually been quite a bit better recently, which rightly or wrongly, I have been putting down to the fact my breathing has improved. Within a couple of weeks of having my nebuliser and the new inhalers, I couldn’t help but notice that especially, my speech improved. It might just have been coincidence, but I really don’t think so. I know that I have I said it before, months ago, that I was sure my brain wasn’t receiving enough oxygen all of the time. It was, though, just my opinion and I have nothing to prove it was my COPD, or even back it up, other than my experience. Not only has my speech been clearer, but those long gaps while I searched for the next word, have been more than halved. My mind has been less fuzzed and far quicker, I just generally felt more like myself. When you have a shopping list collections of illness to choose from, what is causing what, or has been the trigger for anything, is almost impossible to workout. Add in the fact that illness is phasic, the picture is even more confused. What I do know is this. Right now, my brain still doesn’t feel fuzzed like it was pre-nebuliser, foggy at times, yes, but not that almost audible fuzz. My thought processing is sharper and my speech clearer than pre-nebuliser. My memory has fallen apart again, so this time, I’m blaming either my PRMS, or my Fibro, but my money is on the PRMS.

On the surface, my memory problems sound like nothing in the great scheme of things. It’s only when you actually take a few moments and think of the realities of their effect, that part of my frustration becomes even more understandable. Every time I forget something that is in another room, means I have to make another trip to fetch it. Every trip, planned or not, seeps away at my energy reserves, increases the fatigue levels in my arm muscles and frequently triggers spasms in my intercostal muscles. It also means that pressure is being put onto my hands, which increases the chance that my thumb and knuckle joint will dislocate, either then or later. Yesterday alone, I was forced into making 8 more trips than I really should have needed to complete. On Monday, it was more than double that. When you open up that picture and look inside, my agitation and frustration, starts to make more sense. The more frustrated I get by it, the more I seem to forget. For new readers, please don’t suggest any of those so-called memory aids, been there, done that, doesn’t work. Yesterday afternoon, I had to clip my nap as I really couldn’t put off having a shower. My shower was probably the only thing that went smoothly yesterday, and actually, took less time than expected. Because of how I was feeling, I headed back to my bed just to try and spend half an hour totally relaxed, but not asleep. My plan backfired, despite my having sat here, double checking, that I really did have half an hour to spare when I got up, I discovered that I had got the time totally wrong. I hadn’t just looked at the time on my PC, I double checked it by the alarm clock in the bedroom. Somehow my brain had done what it so often does, it had tricked me. My relaxation was wiped out totally, my frustration and stress levels shot through the roof. I stopped trusting myself with time a long time ago, but when Adam isn’t here to confirm things for me, this is what happens. If all of that isn’t enough, I started my day by going through just half of my morning medications. I used my nebuliser and inhalers but totally forgot, for two hours, until my pain levels were rising, to take all of my tablets, every single one.

If my brain would just hold onto what it is supposed to be doing, this week, would have been a totally different story. I know we are only one Wednesday, yes, I checked. But I have been more tired than I should be and I have spent so much time just cursing myself, over time wasted and unavoidable confusion. My frustration values, clearly have been high, but there really isn’t anything I can do about it and it’s worrying. As I said early, frustration breeds stress, and stress breeds any problem you can think of that my health has ever done. I can see that the rest of this week is just going to be one long battle with the whole thing. I have frequently joked, “Who needs a brain”, well this week, that joke has run out. All I want right now, is even half of one, as long as it’s the half that seems to be missing.

Please read my blog from 2 years ago today – 25/11/2013 – The hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip……