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…..

 

It just keeps coming

“I wet the bed.” “Last night, I, wet the bed.” I’ve been saying it over and over in my head all morning, as I honestly don’t believe what happened, but it did. I had woken just after 4 am as I was freezing. When I pulled back my sleep mask the reason was clear, I had totally thrown the duvet onto the floor. Something else I don’t believe, but there it was, just holding onto one corner by my right foot. The solution was simple, sit up and pull it back over myself. Once I laid back down, I started running the idea of going back to sleep, now that I was warm. Sleep glorious sleep. Then I remembered that I have been having a mild issue with leakage, nothing much, a few drops or at the worst, an eggcup full passed as I tried to reach the bathroom. I didn’t feel like going at all, but I decided that it was better to be safe, rather than sorry, so once more I sat up, this time, I swung my legs over the edge, and I put my hand on a wet patch a the side of the mattress. I knew that I must have been overheating, because of the position of the duvet, but this was too wet, and not where I expected it to be. It was then that I realised my lower back was wet, and I swung my arm behind me, the bed was soaking. Not damp, it was soaking wet. Clearly, “I had wet the bed”.

I’ve always known it was a future possibility, so much so, we had been stockpiling spare sheets, each time I bought a new set for the bed. Somehow, though, I never thought it would have been like this. If I hadn’t thrown the duvet off me, I would have just kept sleeping, totally unaware of it all. But here I was, awake and wet, with a wet bed. I headed for the loo, to be sure that my bladder was empty, and to wash myself down with the wipes I carry in the bag hung on my wheelchair. It was only 4:16, I couldn’t wake Adam, not this early, but what could I do? I don’t have the strength to change all the bedding, but I had to do something, I just wasn’t sure what?

After chain smoking three cigarettes, I headed back to the bedroom. There was an old towel that I found the other day, in the bottom of the wardrobe, when I was sorting out my draws. When I found it, I didn’t have a clue, where it had come from or why I had it at all. I was so confused that I brought it out and placed it on the kitchen counter, to see if Adam knew the answer. At first, he too questions, then remembered. When we redid the bathroom, about 6 years ago now, I had spent quite a lot on a really good set of towels. We hadn’t had them a month, when Adam washed two of them, along with some black socks. They were ruined. He spent days trying to find them online, without telling me anything about it. Eventually, he found them and bought two replacements and snuck them into the cupboard. Then told me. He knew that I had not only invested a lot of money in the bathroom but also a lot of time and creativity. He also knew that I wouldn’t be amused by his carelessness. He was right, but I would have just done, exactly what he did, replaced them, the difference being, I knew where I bought them. The towel in my wardrobe was one of those, one I put there, for exactly the possibility that I might wet the bed.

There was some kind of strange thing going on here, that last week, I found the very towel that I needed to be able to sleep, and that was just what I did. There was one thought though in my head as I drifted off, I had to somehow wake around 7am, not the 8:30 that the alarm was set for. Another thing that I can’t do, I can reset the alarm. It was all down to luck. 7am on the nail, I woke. I got dressed knowing that my next task was waking Adam and facing him, while I told him what had happened overnight. I found myself feeling just as I guess my son Christopher must have done when he came to tell me that he had done the same overnight. No scared, because no one was told off, just upset that it had happened. As I said, we knew that this day would come, I have had issues with my bladder from almost the start, but that didn’t make it any easier. The sheet, towel and the two mattress toppers went through the washing machine and tumble dryer. I had it all done before Adam came home. He had set the first load running, and then placed the rest, where I could manage it from my chair.

My body is falling apart at a speed I never expect it to. Since January, I have hardly gone past a couple of weeks, without something else causing me problems. Yesterday, I posed the possibility that there is a new lesion on my spine, today, I really think, that is the issue. From my neck down, I am falling apart at full speed, and yes, I have been sat here with tears running down my face, as I have been writing this. There were none earlier, something I don’t understand. I know that Adam was ready for them, as he kept coming across to me and holding me. He even phoned half way through the morning, but the tears didn’t appear until I started to write. I can’t wait to see what it will do to me next.

 

Please read my blog from 2 years ago today – 21/06/2014 – There is no control

I had to go to my bed early last night, I just couldn’t stay awake any longer and I felt like I would die on the spot, well die might be an exaggeration, pass out would be much closer. Most of the day I had been struggling, it was difficult to feel anything about anything, but I guess it was to be expected following the morning I had. I was right, sitting writing did make it all worse as within an hour or so, I began to just feel like I have been all week, but the exhaustion was somehow deeper, as though…..

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……

 

 

 

Joyus

I have for years now, taken enormous pleasure in simply going to bed. It was the one place where my body was cocooned, which meant that the twitches and mini spasms didn’t shudder through my entire body. Even the next stage up, on the scale of spasm, seem to be reduced in their pain and their worst effects were held at bay. I have been lucky for so many years, in the fact, that sleep always appeared quickly, and I slip into a world where pain doesn’t effect me in any way similar to the day. Bed and sleep, have became my joy in everyday life. From just reading those few lines, it’s clear that something has changed, something is now intruding into my rest. In the run up to Christmas, I have written about the bizarre increase and new areas that sensations have been running wild. Yesterday was the first day, they found their way into my rest, in a way, that was somewhat disturbing. It’s normal when I get into bed that I will have some part of me, tingling or filled with pins and needles. Since I have been using my wheelchair, it is my arms, where it was once was my legs. Their upset, was clearly due to the fact that the muscles had been recently used, no awards for working that one out. It is also normal, for my diaphragm to be producing pain, and the change from vertical to horizontal, normally, triggers slowly tightening intercostal muscles. All of which, I can slowly manage with relaxation and drift into sleep, or just rest for a while if that was my goal. Yesterday, both in the afternoon and at my bedtime, lying down, didn’t dull anything, it sent my entire body into bedlam.

I have felt similar things during the day, but never quite as complete, or as intense before. My entire body, and I do mean entire, as I couldn’t find any part of me that was silent, everywhere was filled with different sensations. You name it, other than lightening shots, there was some part of me that was feeling it. The majority was my old friend numbness, followed by tingling, pins and needles and pain. I was in bed for an hour during the day and never, once, managed to shut it all down. I relaxed as much as I could, I worked on taking each part, past relaxed and into what I call sleep, basically, so relaxed that it feels as though they are no longer there. My success rate, for the first time in ages, was poor. I could turn the intensity down, but I couldn’t find any silence and definitely no sleep. I have over the last few weeks, become used to this same problem when I am up and about, but then, there is, at least, distraction. Distraction is something I find effective, even if it’s only an effect on my conscious brain. When you are lying down, in total darkness provided by a mask and with earplugs in, there is no distraction, the whole point of my accessories. Distraction means lack of sleep, so they have to be removed. Also, the reason, that I work through my normally highly successful relaxation techniques, it removes the distraction of my body. It didn’t matter in the afternoon, I wasn’t looking for sleep, just rest. Yes, it meant my rest was more limited than usual, but I did still rest.

Night time was a totally different story. I don’t know how long it took me to find sleep, as when I woke at 4 am to go to the toilet, I couldn’t remember sleep, just my voice constantly saying “relax”. I should have woken with silence everywhere apart from the desperate message from my bladder, but even then, the silence wasn’t there. It was the exact same story when I returned to bed, and then when I woke once more at 8 am, still with only the memory of my voice in my head. It now over 24 hours, since I last remember not have wild messages from every part of me, bombarding my brain. There has been no peace, no time when I haven’t felt the desire for a silence, that just can’t be found. I am growing more and more tired, I know I must have slept, but the benefit of any of it has been lost. My plan, of getting more sleep, seems to be further away with every hour. Right now, I want nothing more than some deep refreshing sleep. There is little point in heading to bed, little point in lying down, when nothing changes, nothing goes away. I am pushing myself to stay awake right now, as I have hope that when the point of total exhaustion is reached, which isn’t far away, sleep will win.

At first, despite the annoyance factor, I found this sensation display, amusing and fascinating. I was beguiled by the range and constant changes all over my body, caught up in the desire to understand. That has worn off. All I want is, a short spell of peace, I’m not even greedy, it’s not like I’m asking for it forever, just when it’s time for sleep. Just to take a step backward, as I can deal with it when I’m awake, we can all deal with anything when we’re awake. The maddening thing is, that I am almost sure that it was the overactivity of the last couple of days, that brought it on. Now, it is the cause of overactivity, because it won’t let me rest. There are times when my health really makes me feel as though I am losing the plot, today is one of those days. I have always done whatever I can do to work with my health, but just occasionally, it makes it impossible to do so. When it takes over in this fashion, you just feel floored. I swear that somehow, every tingle, every spear that prods at me, and every area that feels dead, is draining my energy even further.

I know I will get some sleep. I will be so far past just tired by the time my afternoon nap comes around, that I will sleep, maddening sensations or not. Right now, I have things to do, I have so many things to do. Maybe, I won’t wait, just tidy through what has to be done, then go to bed. Blessed bed, my joy in this ever annoying world. Please don’t take that one thing away, at least not now.

 

Please read my blog from 2 years ago today – 28/12/2013 – Painful answers

Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted…..