It took me two hours yesterday to eat my lunch, 2 hours for just 6 rice cakes with Feta pressed on to them. Yesterday morning I couldn’t face even the idea of a bowl of porridge, so I had more rice cakes, just three for breakfast with marmalade on them, they were eaten just about as slowly. The last couple of weeks have been a constant battle with food, feeling sick at the thought or managing to start eating, whilst finding it impossible to complete, hence my persistence yesterday, I had to eat, regardless what my body was telling me. Forcing food into a stomach that is screaming it is full and needs not another crumb, isn’t fun, I had to keep stopping waiting a few minutes then taking the trying again, taking another bit and holding it in my mouth as swallowing, felt like betrayal. Almost everything I do is based around listening to my body, then doing what it is telling me it the right thing to do, so having it scream at me, now for days on end that it doesn’t need or want any more food, is a hard betrayal to live with. Knowing that you have to eat is of no help at all, when all your stomach just wants is to be left alone. If this hadn’t started long before the knowledge that I was going to have to go to the hospital, I would have just put it down to that, but it started long before, just odd days here and there back them, now it is all the time. Even last night when I had my nightly oatcakes, instead of 3 I took 2 an hour later than normal and ever grain was a slow steady push to find the end. Worse still, I am now having issues with drinking, I didn’t notice it until Wednesday, when I found myself for the second time that day, looking at a flat, warm glass of coke and realising just how long it had been there. Even when I went to bed, for the first time ever, the glass of coke I had poured at 8pm that night, still held enough to go straight to the bedroom without filling, last night made the third night within a week.
I know that part of it is down to my diaphragm, I can feel it locking up at the slightest thing and tighter than it normally does, other than when I am in bed, but now it has the same power during the day. On top of that is the constant pressure that I feel lower in my gut and stomach, almost as though they are both constantly full, which is impossible, my gut may be emptying slowly and requires a constant stream of encouragement to do so, but there is movement, I can’t be full as it feels. There is one odd thing that I have noticed, I don’t seem to pass wind at all, other than around a bowel movement, other than that nothing. I find it really odd as for over two years, I have lived with the opposite issue, when you are incontinent, part of the issue is that the muscles have stopped working. Just as the odd piece of stool escapes, so does wind, but worse than I ever imagined, it streams from you with every step you take, which for someone who has held onto it until alone since being told to in childhood, isn’t just embarrassing, it’s mortifying. That suddenly stopped about three months ago and when I say it stopped, there was nothing not even the smallest bit. It is one of those things that you suddenly realise is missing and try your hardest to remember when it last happened to come up with a blank, as it’s too long to remember, then can’t stop monitoring and waiting for it to happen again.
When someone tells you that you have PRMS, you don’t realise just how much of your life and body it is going to take over. I think I was like most people, even thought I had been living with undiagnosed RRMS for nearly 20 years, I still thought that MS was pain, spasms and lose of mobility, nothing more than that. I think my first clue was when a nurse said to me how sorry she was, as it had to be the most horrid illness she had ever come across. She was far from the last medic to have used those words or similar, the most horrid illness, or the cruellest illness, but I didn’t have a clue what they were hinting at, it actually is only recently that I have begun to understand it at all. I think the biggest clue was when I got the diagnosis of my COPD, despite my having emphysema, it was still my PRMS that was doing greater damage, it is as likely as the emphysema to kill me, by crushing the air out of me. My lungs where the final major part of me to succumb, actually there is one other organ I just thought of, my liver, it is as far as I know not effected, but I bet the drugs I throw down my throat can’t be doing it any good. My guts gave into it years ago and like most things they go through good and bad spells, this is clearly a bad one. It’s just odd to not only know it can control your life but to actually feel it’s effect from head to toe without an inch of your body to be found that has escaped.
Anyone can live with pain, it’s not nice and we all wish that we didn’t have to, but to live without air or food, is impossible. What are you supposed to do when neither system is working as it should, other than die. Unfortunately for my PRMS it has found a victim that isn’t giving in to it, even if I do get the news that my liver has succumb, there is still a lot of living to do. With much of my pain under control, to the point where what I feel now is more the sensation of pressure where pain should be, makes life liveable, uncomfortable but liveable. One thing I understand about pain control is that it doesn’t stop you feeling the worst that your body can come up with, it simply controls the everyday pain levels. I am dosed up constantly on Morphine, yet I still feel pain when my body really wants me to know, I know. The everyday, the pedestrian pain that comes with PRMS, is dampened and subdued, yet I still hold onto the dream of total pain relief, rather than just control or even a single position that I could call comfortable, I also know that it could be so much worse. Still being able to feel the muscles as they cramp and knot at least tells me what is happening and how much it has changed over a period of time, I have no doubt that this growing problem with my gut, is part of a growing activity through out my body. Just as I am sure that there isn’t an inch of my body unaffected, I also know that there isn’t an inch of me that isn’t actively affected in any 24hr period I can think off.
Today, I have no comfort, no escape, not even my booster tablets are braking the cycle that seems to have taken hold of my life recently. I always thought that if I were to have 70mg of slow release morphine in my system that I feel subdued, relaxed and pain free, to add on another 10mg of fast release morphine and the result would be a coma. Well if you watch “Casualty, just 2mg deals with broken limbs and 5mg everything from heart-attack to missing limbs. I feared taking that first morphine tablet they prescribed, I remember looking at it for ages before taking the plunge and swallowing it, then sitting down quickly waiting to feel, well I don’t know, some affect that would explain why people spend so much money to buy it illegally, I felt almost nothing, just the pain easing. It didn’t break the fear and respect for a drug that I still believe is the last alternative, but I also wish they had given it to me sooner, as I could have been saved so much pain. I don’t understand prescribing at times, it’s not as thought they don’t know what is wrong with me, so why hold off, why not give me what I clearly needed, why put people through what can be avoided.
Please read my blog from 2 years ago today – 8/11/12 – Hospital again and again and….
I am so far behind my normal scheduled today that I have given up any hope of catching up. I had my appointment at the hospital this morning to find out what happens now with the problems I am having with my guts, this time I had to wait but not too long and it what a different doctor that I saw this time. We discussed the gallstones and at the minute it looks as though nothing is going to be done about……