Get me out of here

I want to run, just run and run until my body collapses, but how do you run, when you can only walk a handful of steps. I’ve had this feeling so many times in my life, and I can’t truly tell you the first time it appeared, but I was young, very, very young. I suppose we all want to escape at times, to just leave where ever we are, not forever, but just long enough to escape life, all life, until our bodies feel nothing, but, the freedom of honest exhaustion. It wasn’t until I was in my mid-teens, that I actually had the independence to just shut my front door, and run out into the dark. I don’t know why, but it’s usually at night this comes over me, at a time when most wouldn’t even put a foot outside alone. When I moved live to Glasgow city center, I used to run from my home to the Green, it’s just a large park, and it wasn’t that far from my then flat. A wonderful space filled with grass and trees, in total contrast to the grey buildings of the old city, and the steel and glass of the modern. I liked it there, it was silent and empty. I could always find somewhere I could sit in silence and recover enough, before, I dragged my tired body back home. Several times on warm summer nights, I have actually slept what remained of the night right there in the park, curled up under a tree. Depending on the tide, I often listened to the Clyde as it flowed over the weir, rarely did I see a single other living soul. When I told people what I did and where I went, they thought I was mad, but you’re only mad until other try it. I wasn’t any madder than one of those joggers I often saw, but for me, this had nothing to do with getting fit, just getting as far, and as fast as I could, away from where I was.

It doesn’t matter how many times I have set out, running until my lungs felt as though they would explode, I never got rid of the feeling, but that exhaustion, was somehow, my freedom. You see, you can’t run away from yourself, or even most of the situations you find yourself in, but when you are so tired, so tired that your body takes over and demands sleep, then you’re at least free for a while. Today, I so want to escape, I want to be anywhere but here, right now, in this body, as I feel so bad. I can’t believe the way that this new drug is messing with me. I thought last night was bad, but this morning has been bizarre and so hard to get through. Hence, here I am starting tomorrow’s blog early, as what is going on is so intense, I don’t want to miss how it feels, or forget what it’s doing to me. I thought that it would be gone when I woke, after all, it was 12 hours before that point, that I actually took it, but it wasn’t. Yes, it was less, but it wasn’t gone. I still felt spaced out, unsteady and muddled, even my eyesight was wrong, it was as though whatever I focused on, was all I could see, anything on the peripheral was excluded. I don’t understand how this drug seems to concentrate everything, but it does. It is somehow making everything intense, everything is sharper, from vision to sensations. Something’s, like eating, are supplying what I can only describe as a sensory overload. Flavour, texture, movement, balance, they’re all different, they’re all sharper, brighter and fixating. I’ve never known anything in my life like it and the fact I want to run, tells me, that every part of me doesn’t like it, I want to escape, but I can’t.

By lunchtime, I was feeling just that little bit better, more myself, to the point that when Adam phoned, I was able to tell him what had been happening to me. I wouldn’t have done that if I hadn’t felt the worst of it was over. Even when I did, he was offering to come home, but as always he was missing the fact, that I was feeling better. It took some time to convince him, that I really didn’t need him here, and I was now able to cope. I also decided at that point that I was going to go ahead with taking them that night. Even though I had said earlier that I would, I had honestly had my doubts. Part of me doesn’t want to feel any of this again, others are telling me that it has to be worth it, it has to be better than the way things have been. Surely my doctor wouldn’t have put me through this for nothing. So I’m resigned to another two days at the least, then I will think it through again.

Today: I took the Duloxetine again last night. Trust me, I didn’t do it with any sense of joy, it was closer to dread, but, I have to say that things are a lot better this time, Instead of life being intensified to 200% of everything, I’m closer to 150%. It’s not right, but it’s better. When I went to bed, I still went through that rather, dishearting experience, of diminishing right down to nothing, but at least, I didn’t take so long to reach sleep. In fact, the worst part of the night was when I woke for my nightly jaunt to the loo. I woke to find that my entire left side didn’t want to move. It wasn’t paralyzed, it was more as though none of that side had moved at all since I lay down, and was, therefore, set in that position and was unwilling to change it. I was only out of bed for about 15 minutes in all and when I returned to bed, there was still no change at all in the way it felt. Movement had changed nothing, it was sluggish, even unresponsive in it limited actions. When I laid down again, it felt as though I was returning to some kind of mold that I was slipping back into, and half of me, gave an almost audible sigh of contentment.

This morning, I no longer want to run. I’m not exactly singing with joy, but, I’m not that far from myself. The biggest change, well, that’s simple, I’m not scared of taking tonight’s pill. Yes, I can admit it now, last night I sat in the kitchen holding my pills in my hand, but all I could see was the new one, and I really didn’t want to take it. I had to throw it into my mouth and swallow quickly, as I was sure that if I didn’t, it would either stick in my throat or, I would chicken out. I am now hopeful that when I take it tonight, that I will be better again. It’s just a matter of wait and see. Part of me is wondering, if no matter what happens, I should call my Doctor on Monday and just have a quick word with him. This is so alien to me, but I just want to know if this is normal in any way, or if, in his opinion, I should stop it straight away, or perceiver. There is one big change, yesterday, I spent most of the morning feeling wired, followed by a gentle lessening. Today, I was still mildly spaced, but it hasn’t been followed by a normalising feeling, rather than by tiredness. I have right now, a great desire to just go to bed and have a good long sleep, something I haven’t done during the day, for over a fortnight. My lengthened nights sleep has had the desired effect, my afternoon nap hasn’t been needed daily. Today, that need is back, and it’s not even lunchtime. Hopefully, tomorrow, I will be able to, at least, think about something else, other than just how bizarre I feel.

 

Please read my blog from 2 years ago today – 10/01/2014 – A problem to think about

Last night I was dying again, I was simply lying there waiting for it to happen but as always it didn’t. I don’t know what triggers that feeling, what it is that makes you totally believe that you won’t wake the next day……

 

 

 

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…..

 

Getting it right

I lost my right leg last night, we were just watching TV, and the whole thing suddenly died from knee to toes. Compared to last week when I wasn’t able to find a single of part of me that felt normal, I’m not complaining. What made me mention it, was the fact it was to totally numb and went suddenly. I’m used to it normally going slowly from a single expanding spot, but last night, it was fine one second, the next it was gone. I guess it could say it has learnt a new trick, in time for the New Year. In general, getting that deep nights sleep did make a huge difference and it is a trick that I am going to hold onto, just in case, it’s needed again. I wasn’t doing it totally in the blind, as the day before I had taken a booster during the day and I noted then, that the sensations eased off, they didn’t stop, but they did turn down in intensity. I am wondering if part of the problem, is that my painkillers aren’t holding everything as quiet, as they have up to date. It has been quite a while since they were last increased and I know better than most, if you are constantly fighting, even with low-level pain, you get tired. It doesn’t just wear you down during the day, but it also means that you don’t sleep as deeply, which isn’t something you can’t really measure, other than by how you feel during the day. Get tired, which I have been now for ages, and everything else steps up, making life miserable. It might well be time to ask for a 10mg increase on the slow release Morphine, as the last time I increased it by that amount, life changed totally for me.

I don’t know if you would call it a healthy respect, or just a plain reluctance, but I never race into increasing or changing my medications in any way. I know that some people just take and take, with only one thought, to try and make their bodies feet just as it did before their condition began. That to me is not the best route. If I had been doing that since I was diagnosed, god knows how many drugs, I would be taking now. I, without discussing it with anyone, have cut out and ditched about half the drugs that all my different Doctors have prescribed for me, at different times. Every drug I have ever been given, I have tested, not just when I first started them, but at odd occasions from then on. If I didn’t feel it was doing what I expected, I would stop it for a while and wait and see exactly what happened. This is not something, I recommend that anyone does, I have chosen carefully the drugs I have removed, none has been life essential, nor condition altering, just symptom suppressing. I noticed, that every time I complained to my doctor that I wasn’t getting my expected result from taking them, all they did was up the dose. The first one that I stopped was one that was supposed to keep me awake. After about three years of taking them, I suddenly found that I could take it, and go to sleep within the hour. I simply wasn’t happy about adding yet more, of what in effect was “speed” into my system I stopped it and absolutely nothing changed. I didn’t feel different in any way, so I could see no point, in taking their ever increasing dose, when the one I was on, far higher than the insert suggested, did nothing. It has prompted me to test others as well over the years. At a guess, I would say that I have halved the medications they would have otherwise continued to prescribe, they weren’t doing me any good and were just costing the NHS money.

I know that my body is a mess, and I can’t see how, it helps to fill me with chemicals that do nothing or little. The drugs I am on now, are drugs that I need and work, but I still have a reluctance to increase anything, before I reach the point, when there is no other answer. Chemicals can help, but there is no way, that there isn’t a price to pay at some point. Right now, my body is tolerating them, appreciating them and working with them, which is just how, it should be. I know that on the scale of things, the level of Morphine that I am on isn’t that high, but, I don’t know how many years I still have to go, or how or what my body will throw at me. Addiction doesn’t come into it the equation at all. Why would it? I’m in the closing phases of my life, if I get addicted to anything, well it’s not going to matter, as there’s only one way that I will ever come off it. All the medical profession can do for me, is to keep my pain levels at bay. I know they can’t take it away, and that I will never, not even for a minute, be totally free of it. As long as it’s at a level where I can live with it, then that’s all I ask.

Chronic illness is all about balance. Activity, enjoyment, drugs, sleep and hope. You have to have them all, and you have to decide for yourself, how you want that balance to sit. It’s personal, not medical, and that’s something a lot of people forget. Our doctors are there to help us, look after our bodies, not to control them. It doesn’t matter what the medical books say, or those people who read them, think they say, it’s up to us, to interpret it all including how it all makes us feel and to control our health. Personally, as I’ve said before, I listen to my body, I know it and I know quite quickly what it likes and what it doesn’t. So far, I don’t think I have done too badly in actually living with PRMS, COPD, Fibro and a list of many other more minor conditions. This is the start of year 15 post diagnosis of my PRMS, 15 years ago, I didn’t think, because of what my doctors said, that I would be here today, yet here I am. This the start of year 3 post diagnosis of my COPD, 7 more to go, if the doctor is right, but I still think, that it’s all up to me. I’ll keep listening to all and anything that might help me, but it’s all up to me.

 

Please read my blog from 2 year ago today – 02/01/2014 – Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used…..