It’s a killer

Things were bad last night, I found myself searching out my booster pills not long after taking my final scheduled meds for the day. As normal, we were just sitting watching TV, but the pain from my diaphragm was off the scale, not just cutting me in half it was putting pressure on my kidneys and they really don’t like that. I know that part of the problem was being caused by the fact that my bladder needed emptied and just hadn’t bothered to tell me, as when I took my meds I had been to the loo and peed for Scotland. I can remember being told over and over not to sit holding on to urine as it backs up and can cause permanent damage to your kidneys, but when your bladder doesn’t give you the signals required and you don’t have any memory of when you were last there, well what can you do. It is another one of those mixed up situations, affected by all the usual culprits that there is no easy answer to, other than to have my spare brain, also known as Adam, to keep notes of my toilet visits and keep me up to date as to when I should next go and at least try. I stupidly went to the loo at the same time as I took my booster pill, so I don’t know for certain which it was that reduced the pain I was going through, although I would put a bet on that it was the booster as it wasn’t immediate, it took about 20 minutes. Before anyone reminds me that I have a cupboard filled with catheter and that I should also be using the three or four times a day, well don’t tell me, I know this, I just don’t ever seem to do it. I used to think that that phrase about “being our own worse enemies” was a little odd, but that was in the days when whatever I did, didn’t matter, I always survived without any real impact on anything. Now I understand it to it’s fullest, in fact, I almost guarantee it was first said by someone who had a health condition that included a memory of a sieve.

My diaphragm has done this in the past, when it’s at it’s tightest it is like living with a piece of razor wire wrapped around me that has an added twist, every time you move it saws and grinds into your internal organs. Like a lot of pains, it isn’t isolated to the exact source area, when the back of my diaphragm which isn’t alway involved, decided that it wants to play, well that is when I have my biggest problems with breathing appear. If it is just at the front, I have found that hunching forwards seems to allow me to breath more easily. When the back is also aggravated, well think about it, hunching forwards pulls everything in your back tight, add in an already tight cutting pain and I am sure you are starting to get the picture, now add in the pressure coming from my permanently aggrieved guts and my kidneys are immediately in line for being crushed, or at least feeling as though they are.

It has only been in the last five years that I have been having spasms within my body cavity, before that they were totally limited to my limbs and my head. It didn’t matter how painful they were, or how tightly the muscle might screw itself, I knew then that there was nothing other than the muscle involved that could possibly be damaged in any way. Yes, they often hurt like hell but they also responded well to the drugs that were prescribed for me and although not gone, they were under control enough for me to continue with my life, then I had my first MS hug. I defy anyone not to worry when they suddenly find themselves for the first time with a vice closing around their lungs and or over their heart. I was lucky, I knew it was possible but I didn’t have the slightest idea how it would feel, well the word “hug” doesn’t describe it in any way what so ever and on a couple of occasions I was sure I was having a heart attack, which clearly as I didn’t die, I wasn’t. I never once thought that they could actually turn into a permanent feature of my life or that they could actually as I was told a couple of years ago, really kill me. I know yesterday that I put forward the question as to do we get told these things and brush them aside as impossible or honestly didn’t know, well in this case I can honestly say that I didn’t know and I honestly don’t think others do either. With their effects getting more and more extreme as time goes on, I am now clearly wondering what other damage they might do to me before they eventually play their final trick of shutting down my lungs forever.

It is now over a week since I was free of a hug, a full week of having not just discomfort but pain, real pain that isn’t broken at all by sleep. It doesn’t matter if I wake in the middle of the night or when the alarm goes off, I wake to almost exactly what was there when I went to sleep. There does seem to be a pattern settling in, as during the day it remains at around the same level but as I become more tired towards the end of the day, the more the pain increases. Last night wasn’t just yet another example of the pain and the knock-on effects, but also of a string of thoughts that I hadn’t voiced before even fully to myself and it started thanks to that pain over my kidneys, what other damage is it doing? I used to get really angry when I read some of the older information that was given out about MS, mainly because it was all about RRMS, but also because it always told one huge lie, MS doesn’t kill. MS most definitely kill, the fact that the condition that actually caused death was pneumonia or even a heart attack, both of which could be caused by MS due to immobility, but it was never the MS that was blamed. The longer I live with my PRMS and the more that I discover what it can and does do, the more angry I get about that one huge lie and the more I realise just how huge it is. It was only last year that a study was run in the USA that proved that our life expectancy is between 6 and 10 years shorter than those without the condition and they were only looking at RRMS, if all the death certificates actually blamed the real culprit, rather than a secondary condition, I am sure MS would be seen as a true killer. As long as MS is treated as just a chronic, progressive, degenerative condition, rather than a killer, the more of us will die from it. Right now my biggest question is this, if I have muscles in my chest that are managing to tear themselves apart, badly enough to make them bleed slowly and cause permanent bruising on the surface of my skin, some of which have been there for over two years, what damage are they doing inside that I can’t see and the doctors aren’t looking for?

Read my blog from 2 years ago today – 10/04/13 – Where to settle >

I have found myself a new distraction, a reason not to do. The photo’s of Teressa’s wedding. I just can’t stop looking at them, they really do fill me with so many mixed emotions, having not been there I have a lot of sadness still that I wasn’t there to share her day, but I also feel tremendous pride and love for her. How could any Mum not be proud of having such a beautiful daughter? I had already enough things to distract me without….

The loneliness place on earth

Loneliness is something we have all felt from time to time, its part of life, but when you are ill or even housebound, there is a new loneliness that appears and it has nothing to do with having people around you. Being seriously ill, especially with a rare condition is a loneliness that it is hard to find the right words for, as you feel as though no one on this entire planet is feeling just as you do, that there isn’t a single human soul that can truly understand what you are going through. For me being housebound isn’t something that makes me ever feel lonely, being ill with PRMS, is often the loneliest place on earth. I know that MS along with many other conditions doesn’t have a clear path that anyone can say this is what will happen next, or this is even what you might expect in the future, so the chances of my having a health twin out there is almost zero. Right now and from it’s beginning of my MS to my eventual end, no matter how many people care for or even love me, I am totally alone. Just occasionally, there is a flash of someone else understands, but they are moments that are set on certain symptoms, not the whole picture, just parts, but there are things that could change out there, that could actually help the millions of people out there who like me are on a solo path.

I did some digging around online yesterday afternoon and I eventually found not a medical site or a one of the MS sites, no that would be like them actually admitting that things can and do get worse than they care to even imagine. I actually came across two sites, both like mine written by actual people who have MS, I was surprised to see that the number of blogs in the last three years had skyrocketed, most unfortunately still shy away from anything other than the average symptoms or are written by people who have RRMS, but as I said I found two slightly more detailed ones. Neither in my opinion gave a full detailed account, but both did talk about how bad the shutting down of their bowels had become. Both talked about the fact that they too could go weeks without any movement, despite taking all the medications both from the doctors and their own discovery, but shied away from describing the pain or of having to resort to any other intervention and one had eventually had to have a stoma. It was oddly good to find that I am not alone, but it also made me once more angry that all the rest of the sites I found said nothing more detailed beyond the one-word, constipation. I know I have had the odd rant in the past at all the sites out there and the doctors who refuse to talk about what could possibly happen, or how painful and distressing the whole thing can become and how they all seem to refuse to tell the whole truth about anything, but this is a perfect example.

When you are battling against any disease that is destroying you slowly, the one thing you want more than anything else, is to be reassured and know that what is happening to you, is normal. The other night when I couldn’t straighten up because of the pain around the area where my appendix is, the first thing I did was check online to see if constipation could be the cause. I had never heard that it could be nor had I ever heard that it could cause extreme pain in my diaphragm either, but I had enough common sense to realize that it was possible, I had checked online earlier when I had felt it briefly when I got up from my nap, just to be sure I wasn’t guessing incorrectly. For someone younger than me or who doesn’t have my life experiences, well I can see quite clearly how many might had been calling an Ambulance, even Adam was expecting me to have called 999 by the time he came out of his exceptionally fast shower. I have never found any site that actually explains how for example, constipation feels in detail or how it can cause so many other things that on the surface, well don’t seem to be truly connected. Like most people until I started having pain and problems a few years ago, my idea of constipation, was quite simply having to strain or passing dry and painful stools, at it’s worst it meant not going to the loo for a few days in a row, but that was it, minor, annoying but not something that could actually impact on your life. I know that it can be argued that all medical sites are trying to do is to give an overview that could apply to the average person with average health, but to find that even dedicated sites for conditions where it is a symptom of the condition, to still hold onto the softly-softly approach, well to me that is actually cruel and possibly even dangerous in some cases.

I truly wish that there was a main stream easy to find site that actually had the guts to lay out everything blankly and truthfully the details for every symptom or condition, from its mildest form to the absolute worst case scenario. I have had the guts to sit here and pour out the details of my daily life, the symptoms exactly as the feel at that moment and their impact, not hiding anything or even feeling the need to hide myself, why is it that no one else is willing to do the same for every medical condition and or symptom there is. I started today by saying being ill is the loneliest place on earth, it is also a loneliness that could so easily be fixed.

Please read my blog from 2 years ago today – 19/02/13 – Together forever

Well today is fun, I’ve mentioned a few times recently that my hands are causing me a few problems, well today they have entered and entire world all of their own. Every evening lately they have been either sore or numb or if they feel like it both at the same time…………

Living with pain?

Yesterdays pain took over my day, just after I finished my post I took the logical step of taking a long over due morphine boost, it turned out to be my first of three. Having not slept properly from 5 am on, I found the pain just getting to me more than normal, I even found myself snapping at Adam for the things I usually just bite my tongue over. Pain is probably one of the best things for making you do things you don’t usually. I am actually surprised at how well I manage to not loose my temper, I know that years ago I wasn’t so good at it and there are many people around out there who know all to well that I could shout and scream about things, many would have just ignored. I still remember just how much I felt myself change, just knowing that I actually did have an illness behind all the pain and other symptoms I had lived with for so long. Not having effective painkillers, or people who believe you, all to often leads to frustration, a frustration that vanished just by having a name for each different illness I had. I have found so many people who have been through the same or similar, but what really upsets and surprises me is that so many are right now still going through the same thing. Just the other day I had a message on Facebook from a young woman who has been fighting for 7 years to find out what is wrong with her, just like was at many times in the past, she had been close to taking her own life, just because no one was helping her or believing her. She said that what I had written about my fight for the truth, had given her hope, but I find it all so wrong that it takes a chance finding of something on line, to be the one thing left to give anyone enough hope to keep fighting. It doesn’t seem to matter what country we are talking about, there is this standard belief from doctors that if you don’t fit any condition in the area they work in, you therefore have to be making it all up, suffering from some kind of mental illness, not a physical one. There has always been one question I have never asked, but I think it is a really important one. Why if they are so sure that all that pain is down to a psycho semantic illness, why don’t they treat us for that then, rather than just sending us away? I was really luck when one doctor made a misdiagnosis and sent me to the ENT department, where there was a very elderly doctor who knew enough ,to know that no I didn’t belong in his department but there was something really wrong and took a chance by sending me for an MRI, he diagnosed correctly after just looking at the results that I had MS and as they say the rest is history.

Living with chronic pain or chronic anything, is so much easier when you know what the reason behind it is, I have no doubt there are many who have succeeded in killing themselves just because they can take no more. I also have no doubt that there have been many who have physically hurt others because of the anger that pain builds when there is no reason, people who have hit out, not to hurt but because of pure frustration, taking their pain out on others. I remember all to well finding myself unable to get to my feet or to stand and having nothing other than madness to blame for it. Even when other had seen it, including doctors, when nothing showed in their tests, that was the end of it, I went home again clearly in pain, clearly with a body that didn’t want to work properly and clearly as mad a hatter. I wish I knew the answer, or even away of helping those who at this second are where I once was, I am the lucky one, I know now not just the name of one illness I have, but a growing collection that numbers 14 so far, all diagnosed after they found my MS, all where there before, but I believe ignored as I was “mad”. I could write pages and pages about just how wrong the whole system is, but it would change nothing and change is the big thing that is needed, a change that means one doctor saying there was nothing wrong x number of years ago, can’t leave a mark on your notes which mean future doctors don’t even try.

I can now live because I at last have a doctor who accepts all the things that wrong with me and also accepts I am the best person to tell him, just how much pain control I really need and when. Read back through my blog and you will see that getting to this point hasn’t all been plain sailing, but I got here but I don’t take it for granted and I don’t take it lightly either. I know that I am now on a line that says more and more drugs will be needed in the future, just to keep myself at a level I can live with. Pain control never means being pain free, that is a dream and it’s one that takes time to accept. I at first thought that the tablets they would give me would make my life just like everyone else’s, they didn’t and they don’t. I guess that is what most people out there who are fit and healthy just don’t get, more than once I have had people totally shocked that I was sitting beside them clearly in pain, when I was popping pills constantly. Pills don’t cure pain, they ease it, they make it liveable, the only way to be pain free, is to be asleep, easy with medication. To be awake, able to function and with pain at a bearable level, takes a fine balance and is often difficult. Everyday is different, everyday is still a battle and everyday is a 100 times easier just knowing what is behind it.

My heart goes out to those still working their way through, I am glad that I have helped some people to keep trying to find their truth, but I am disappointed that my fight that started when I was 21, 32 years ago, is a battle that still hasn’t changed.