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…..

Knowing too much?

“You have to know your body!” Probably, one of the most important things you learn early on, but can you know your body too well? I sometimes wonder if you actually can, if you can become too aware of every ache, pain and sensation. For sure, I believe that when it comes to sensations that the answer it 100% yes. Without a doubt, I now notice every single tiny area of me, that isn’t doing what it should be, normally nothing. In the distant past, I probably wouldn’t have noticed my leg getting mildly numb, yes, if it were severe, but that tiny tingling start, never. In fact, I’m sure that my body would have intervened, moved my foot or my leg, just to check if it was just a mild circulation issue, before tell me, that it hadn’t worked. Think about how many times in your life, you have gone to stand up, just to find your leg was totally numb, and you didn’t notice a single thing until, you stood up. My post the other day highlighted that I now notice, from the first seconds. I can feel that small section the size of a 10 pence piece, and every millimeter as it spreads. That’s not normal, or an everyday reaction from an average person. I know, really know, what all of my body feels at any second of the day, and I do it without thought, without looking for it. It appears that I have trained myself to monitor, to keep my body in check without the aid of any fancy monitors.

I’m not really one for buying tools, those flashy looking pieces of kit that until recently, you only found in your doctor’s surgery, or just a few years further back, only in a hospital. These days, it appears if a doctor can own it, so can you. If you felt the need, you could fill your home with a mind-blowing range of equipment, to tell you, your still alive. The only piece of kit I have bought is a pulse and oxygen level monitor, and it has turned out to be exactly what I expected, not a warning light, but a confirmation of what I know. For the first week I owned it, I found myself checking, each change in my body, that I thought might be down to low oxygen levels. Most of the time, I was right, not about the figures, but there would have been a dip, or a rise, enough for me to have noticed. Just to double-check, that I wasn’t about to write a piece of rubbish, I just sat still and thought for a second about both. I made a prediction and put my monitor on my finger. My pulse, which, no I didn’t count, was spot on at 86, my oxygen, well that was 1% out, it was 92 instead of 93. I knew how I felt and I have now also learned, what the monitor will say, I do admit, though, not always as accurately as I did just now, but I’m normally very close. In some ways, that is good, it means I no longer worry about either, they are known to me, but, how many people could do just the same? Only the chronically ill. We’re pushed into knowing, into being our own second by second doctor, because, we need to know when things, are going really wrong. We need to be armed with the facts so that if we need to relate them to our doctors, we know, just what to say. Well, that’s one way of looking at it.

It could easily be argued, that if we are that body aware, we are probably paranoid and looking for things that aren’t there. Finding small things and turning them, into bigger things in our own minds. Worrying over the trivial and becoming self-obsessed. It’s OK, I know all the negatives that could be applied, all the things that people who don’t live this lifestyle, often choose to ladle upon us. It’s OK, I don’t believe that but, there is possibly a tiny speck of truth, in some of it and I don’t think we can escape it. When your not believed for year upon year, you do become paranoid, not about what you feel, but about being believed. I learned to monitor my body so many years ago now, that I can’t actually tell you exactly when it started. Probably back in my twenties, when I was first told they could find nothing wrong with me. I knew they were wrong, and the only way I could prove it, was to keep checking until, I can paint a picture they couldn’t ignore. At first, I focused on what was right, and knowing what right was. That sounds odd, I know, but if you don’t know what normal is, how can you tell if it changes? It actually took quite a long time before, I was sure of the range that normal lived in, but once I thought I knew, then I could really look for and understand what was wrong. When I had what I now know were flares, I was then clear about what was happening to me, the fact the doctors still didn’t believe me, didn’t matter, because I knew. The doctors could believe what they wanted, I knew, and that meant a lot.

Being aware of your own body, to me can only be dangerous if you are obsessive about it, or if you find something, that worries you, and you do nothing about it. I think there will always be times we find something odd, something we haven’t felt before. It is bound to happen to all of us at some point, as bodies are like that, they do odd things. It’s what you do when you find it that matters. I can remember sitting here once for about two hours, totally convinced that I was having a series of mild heart attacks. I was getting intense pain right over my heart, and over into the center of my chest, upwards into my armpit and upper left arm. I sat here, actually unsure if I should even move, or what I should do. The pains kept coming, fading away, then happening again. It’s now a perfectly normal part of my life, but then, it had me scared rigid. Which didn’t help, as the pain then started spreading into my neck, because of stress. It was in fact, the very first time that I had had intercostal spasms. I wasn’t dying, just having my first MS hug. I knew about them, but I didn’t know they could be one-sided, something that my frantic Google searches eventually revealed. I wasn’t only relieved by what I found, but that I hadn’t called 999, which probably should have been the right response. There was something in the back of my mind that stopped me, this window of doubt, that kept saying, “if it were, you’d feel worse”. That said, the sensible thing would have been to pick up the phone, I might have felt stupid, but it would have been the correct decision.

If I were sat here, day in day out, consciously scanning my body, I would say that was wrong, I’d say it was for anyone. The big difference is, that I don’t do it consciously, I don’t remember when I last did. To me, I just live my life and my body screams at me about the tiniest things. I don’t understand why it doesn’t even try to intervene any longer. Why when part of me goes numb, that I don’t just change position, but I don’t. It just shouts for attention instead. In some ways, life would be more peaceful if it did, but I can’t unlearn what I’ve taught myself to do. I see it, as just another one of those things, that we the chronically ill, have to live with. Like everything, it has its good points and bad points, but it’s just what it is, and life will go on despite it. Since I started writing, I have lost my right knee four times, the upper left-hand section of my face, and the entire lower half of my right leg, from spot right to the entire thing, now gone for over an hour. I have had pins and needles in my left foot and left hand. Tingling in my left shoulder and my left foot has been on fire. My lips, have been itchy, then decided to hang on to the effects of my scratching them, for about half an hour after I last touched them. My stomach has been so painful that I have had to stop, stand and press into it until it passed. Spasms in both my diaphragm and lower intercostals, combined with upper intestinal pain. I had tingling traveling around and over the right side of my head and finally, shooting pains firing from the base of my left heel, firing upwards along the path of my shin bone and my ankle has turned to lead. A perfectly normal set of information being relayed to me, in the space of an hour. No matter what I do, I can’t stop hearing my body, I know it too well.

Please read my blog from 2 years ago today – 18/12/2013 – Who needs legs?

I had to head to bed early again last night, a bit upsetting really as for the last couple of weeks I have made it through to 9 pm every night, then last night appeared and I disappeared at 8. I had found myself…….

Covering all bases

I am sure we have all felt it, that feeling of dread that fills you from nowhere and for no reason. All I know is the entire world feels wrong and it’s worst right here inside me. There never really seems to be a reason as to why I feel it, but it’s there and I just can’t ignore it. I have had this feeling of what I would best describe as impending doom for a couple of days now. Every minute has been spent expectant, just waiting, but nothing has happened. Living a normal everyday life isn’t that easy when inside you, you believe you are about to either fall over dead or the ceiling is about to collapse in on you. Your world is just wrong and you don’t know what to do about. It’s not as though I feel I am going to have a heart attack or an aneurysm, there isn’t a direction or location of this doom, it just there and keeps growing. Last night I was sat on the settee for the final hour of my day, tossing around in my head if or if not to ask Adam to call me an ambulance. I was so convinced that something was seriously wrong yet I couldn’t come up with a single solid thing that would make sense to anyone but me. You can’t call 999 and just say, “I think I am going to die”, not unless you want them to laugh at you down the phone.

I wish I knew where those feelings come from, as they are so strong and so compelling that it’s impossible to shake them off. There is this fear that something somewhere inside of you is telling you the truth and to ignore it, well the outcome is clear, yet every time it happens, I find myself alive the next day. I know I am not the only one who gets them either, as I mentioned them a couple of years ago and because of a plea I put in my post, one brave person said they got them too. But it is hard to believe that something so strong is a total lie, a figment of your own imagination and has no truth in it at all. I am a great believer in listening to our bodies, to sleep, eat and live to it’s demands, rather than those of convention. Having to force yourself to totally ignore a message that is so clear and so strong, is more than just an alien response, it almost feels disloyal. The first time I remember feeling this way, I stayed awake all night, scared to go to sleep in case I died. It was as thought sleeping would be an invitation for it to actually happen. Now, I lie down, close my eyes and sleep peacefully, not because I am inviting it, but because I no longer have that option to stay awake, what will happen, will happen.

I woke in the middle of the night, I was covered in sweat. My attempts to stop myself from escaping the bed is working too well, I can’t even move the covers when I am too hot. Like so many things in life, there doesn’t seem to be an easy answer that suits all possibilities. There is no other thing to be done when you wake like that, other than to get up cool off and take a break from sleep. I moved across the bedroom as fast as I could as I desperately needed to get to the bathroom to dry off my back until then I had to hold my hair clear of my body. My hair is now at a length that means I can sit on it with ease, on the down side it also means that wet skin is a perfect magnet for it. As I was making my way across the hallway, trying not to make a noise to wake Adam, I discovered that there was a great deal of pain in my left foot. Once I was dry, wrapped in my dressing gown and sat in the kitchen enjoying the cooler air and a cigarette, I started to explore my foot. The worst of the pain was in my big toe, if it hadn’t been for the fact that the podiatrist had been here a few days ago, I would have blamed the nail. There was no way that they nail had grown that fast and besides that, I could apply pressure without making it worse. In fact, I could apply pressure in all directions apart from one, without it changing at all. When I matched it to a small area on my heal, I had the answer, it’s pressure pain. From time to time, I don’t only sleep unable to roll over, but I seem to sleep deeply enough to not even move. The result is that the unchanged weight of the duvet from above and the weight of my foot on the mattress below, causes painful areas, like those of last night. I had been lucky to wake when I did as if I had slept much longer like that the pain would have been far worse.

I have gone through spells of pressure pains in the past. At one point, they were so bad that the NHS supplied me with a pressure mattress. It’s supposed to help stop these points getting so bad that the skin ulcerates, something I have been lucky enough not to happen. Ulcers or not, the areas affected do become incredibly painful and finding a different position when you lie constantly on your back, is impossible. Luckily, if they appear on my feet, I do have some subtle changes in position, often enough to bring some relief. I now frequently develop red and painful areas that last a couple of days, but spending 13 hours a day in bed, is always going to cause problems. For now, they are probably nothing more than a huge painful annoyance, they don’t threaten me in any way that open sore and ulcers would. But the longer and longer I spend in bed and because I don’t have the strength to roll over, the more the threat grows. I have tried repeatedly to lower myself onto my side when I first get into bed, in the hope that I might stay there for a couple of hours at least, before flopping onto my back. Every time I try, the result is the same, so much pain that sleep is impossible and I am quickly on my back again. I have no other option but to lie there and just stay there. If I were to become bed-bound, it would only be a matter of time before my skin began to break down, as you can’t stay in the same position forever. I don’t have a clue what the answer is, but it will be one that I will put directly into the hands of the NHS as they are the experts.

This morning all that is left is a dull ache in my big toe. My brain has settled to the fact I am still alive and at this moment, isn’t plaguing me with mad suggestions. I am once again not just tired but feeling as though life still hasn’t stopped, as yet another night has passed without clear uninterrupted sleep. My legs are in one of those states that means staying still is almost impossible. Everywhere is wrong, every position short lived as I have to change them again and again. This constant movement is rapidly fatiguing my thigh muscles, they aren’t happy at all and I dread the next time I have to stand up. My diaphragm is tight and my breathing shallow. My morning headache has just broken leaving behind a growing desire to sleep. Knowing it is far to early to do so, of course, means that my brain is trying to turn sleep into eat, but my stomach is too busy trying to tell me I might just need to be sick. Who knows what today will hold all I know right now is that “normality” is restored, as far as it ever is.

Please read my blog from 2 years ago – 26/08/2013 – The world out there

I often find myself feeling increasingly guilty in not personally answering every tweet, comment and message that I get, but as time goes on it is not only harder because I don’t have the energy, but truly impossible to maintain a…..

A growing danger

I hoped that I might have a message from Jasmine this morning but so far nothing. It’s really hard when you receive a message like hers’ as technically there is nothing I can or anyone else can do to help her, as she could be anywhere in the world. For some reason yesterday, I had it in my head that she was in the UK, but that is me still holding onto my old-fashioned view of the world where we only speak to those around us. I can’t fully put myself into her shoes, being bed bound and alone like that has to take it’s toll on anyone, but that is the reality that far too many of us face. I get mad at times when I hear stories of people locked into that situation, we call ourselves a caring society, but where is that care when it comes to the end of our lives, when we can no longer give anything in return, so the world leaves us alone with no escape from never ending pain. It’s not just chronic illness, but old age and even depression, that all fall into that net of needing care but little given unless you are lucky enough to have a family around. My heart goes out to her but only time will tell if anything I said reached her.

I realised this morning that I only have one more day of antibiotics left and the ‘things’ are still there quietly leaking, better but still there. I keep checking them, but it isn’t so easy now, when they were at their worst the area’s around them where highly swollen and pushed them into positions where a little light and a mirror revealed their condition easily, as the swelling lessened, especially the smallest one, disappeared into a position I just can’t see with any ease at all. Seeing them or not, I can taste them which I find strange as I wasn’t aware of any taste until the started to go down in size, to be honest apart from the morning when I first woke, I wasn’t that aware of them in any way what so ever, it’s just another of those things that now appears on that list of things that start with the word ‘Why?’, it’s a really long list now and it appears that I will only be adding more and more over the rest of my life, as things do seem to be getting odder and odder. Like the fact I have now for three nights in a row taken a laxative and I still haven’t cleared through what is lurking inside, just tiny painful amounts each morning, but I do have the feeling it is improving. I will wait until tonight and if nothing else has moved, well I am going to take a double dose, something I have done before a few years ago and if that doesn’t work, well I will give in and call the doctor as clearly even a laxative is failing to do what it should. They are supposed to make the muscles contract more strongly and that way push everything through your system, but it appears that even that stimulus isn’t enough to make mine work. I honestly think they are just failing totally now, it has been getting worse over the years, but like a lot of things, even when I ask for help they simply do tests, say they can’t help and put it back in my hands to deal with, maybe I should start telling them that I am not a doctor and it’s their job to fix me, not mine.

More than anything I am surprised how someone can be living on high levels of morphine, plus other painkillers, yet still I can feel pain so badly that my body goes into that horrid cold sweat and shaking. I only once before went through pain like that and that was when I was in labour with my first son, well anyone trying to give birth to an 11lb 2oz baby who had no use of his legs to help push himself out, would have been in extreme pain, but I still remember clearly the shaking and sweating that I went through for the last hour. Yet here I am, dosed up to the eyeballs and still managing to feel pain that badly, to me there is something wrong there! I know painkillers are wrongly named, they don’t kill pain, they just dull it, pain doesn’t go away, it’s still there and you still feel it but at a manageable level, well the pain that my bowels have caused me every morning since Sunday, isn’t manageable, it’s painful and another question on my ‘Why?’ list and on the list of what I want the doctors to fix.

I didn’t really think about it until yesterday, but the stomach spasms that I have been having for the past few weeks have almost vanished. It has to be a guess as clearly, I haven’t spoken to my GP, but I am wondering if they were all part of the same problem that I am having with my bowels. I think that my stomach was desperately trying to push it’s contents into a space that didn’t really exist, as I don’t remember feeling any, well apart from the mildest, in the past couple of days anyway. I am finding it hard to accept that I was so disconnected with what was happening, even accepting the fact that my memory is shot, to not realise that I was in a growing dangerous situation that my body was giving me clues about, is more than worrying. What next will I miss, or dismiss simply because I haven’t remembered the clues along the way? I thought that the longer I was ill, the more I listened to my body and worked with it, the safer I would be, but I didn’t allow for one thing, my memory, what is the point in listening when you can’t remember what you heard.

Read my blog from 2 years ago today – 19/09/12 – Reflexology 

The therapist has been and gone, she is a really lovely lady and was here for 2 hours. We started with talking and I gave her a list of my illnesses and the problems that I am really looking for the most help with. She then set up her massage table and mixed an oil with had a mild smell of herbs to it, before starting…..