Communication isn’t enough

Some days you really feel as though you can’t do anything right and nothing is going to go your way, yesterday was really one of those days. It started out exactly as the last few have woken a bit early and 3 visits to the loo within about an hour or so of each other, none easy but a million time easier than it has been recently. Lunchtime arrived and as I stood up I had this feeling of something escaping and it wasn’t wind. I did make it there but from that point onwards, well let’s just say standing up was an issue. The last time this happened was a couple of years ago and it went on for weeks, luckily this time it was just all afternoon, but I must have gone to the loo at least 10 times and every single one of them productive, then suddenly it stopped, but the whole thing was my fault. On Saturday night when I had taken my meds, I had sat for a while unsure how much to take of the new medicine that the doctor had given me and unusually, there was no sticker on the bottle to remind me, just the tiny writing from it’s makers, I trusted my stupid memory and took 20mls and thought no more of it until the constant flow began. I did a quick check online to find that the most I should have taken was 10mls not 20, no wonder it was ripping its way through me or that I had woken early with stomach pains again. It was my own fault and I had done exactly what the doctor was trying to avoid, using high doses of strong laxatives to force everything through me so fast that the result was just what happened yesterday, rather than finding the correct dosage to keep my bowels moving correctly. Last night I took no laxatives or softeners at all, my guts were and are even this morning still screaming their pain at me for what I had put them through and I didn’t want to aggravate them further.

All this constant problems with my bowels are really taking its toll on me, I have been feeling it for weeks now, this constant fatigue that eats away at me, is wearing me down. I know that my doctor is doing what he thinks is right, trying to manage the whole situation, but because he doesn’t deal with many MS patients, well to be truthful, I know when I was diagnosed that I was the first person ever on his books, I don’t know if he others or not, but I suspect he does as there is an MS nurse who works through his surgery, but he really doesn’t seem to understand the knock-on effect of one thing on another. All the progressive forms of MS have one huge thing in common, not just the fatigue but the way that every little thing that happens in our lives affects our health, fatigue is a warning sign, but the real price we pay for anything out of routine and our normality, is a worsening of our condition. It can show itself in as many different ways as there are symptoms, you can even find yourself caught in a mad spiral, where the worsening of one thing activates another and that other, activates the original. Finding our balancing point is probably the most important thing that we can do for ourselves and it took me the first five years after diagnosis, to realize that all doctors other than those who specialise in MS care, just don’t understand that. I think the best example of that is when my GP insists that I needed to go to the hospital for tests, yes I know not everything is down to my PRMS, but I more than they, know that a visit to the hospital is going to make everything else that is wrong with me worse. I will lose my balance point for something I and they know in their hearts, is yet something more that my PRMS is doing to me, the tests are nothing more than box ticking. Harmless for the fit, life destroying for those with progressive MS. Which is why I was delighted when he said he wasn’t going to send me back to the specialists as they too would just keep changing drugs until they found the right ones for me, it is also why I fear landing up in hospital as a patient for anything. Oddly though, this time my body has found something that is almost as destructive, all this waiting, taking odd drugs to my system, testing, hoping, longing and fearing, making phone calls and feeling useless is causing kickbacks all over the place. My balance is so far off now that it feels like it will be impossible to find again, I’m sure I will, but right now my body is a mess inside and out and I am so tired due to the fatigue and the energy that it is all taking out of me and I just made it all worse by trusting my stupid memory.

Adam and I were talking yesterday and we spoke for the first time about both our fears that I might land up spending some time in hospital if this whole thing with my bowels didn’t change rapidly. It was the first time that Adam voiced his real fears of me being in any hospital, it wasn’t for some reason what I thought they would be, I thought because I know what he is like, that he would be worrying about continuing to work whilst managing to get back and forwards to the hospital on buses for visiting. I remember the last time I was in just how drained and tired he became over just a few days and how he went into a panic about keeping the house tidy and having to have it just right for me to come home to, all things that didn’t really matter that much at all. I was sat there ready to tell him this and to say that although I would love to see him daily I knew just how difficult that is when you work and that I would survive if he couldn’t manage to be there. What came out though wasn’t what I expected, he was worried about being able to convince the doctors that I need the high quantities of the drugs that I am on, especially the morphine, or how I live on a tight routine and need to have things exactly as they are for my health, down to my drug routine that probably wouldn’t fit with theirs at all. I hadn’t really thought about it until he said that, but he has a point, hospitals do things their way and they don’t really care what you want or don’t want. The one thing that has always worried me above all others is how on earth I would manage to get the thirteen hours sleep that I need, if you are on a ward, you are lucky if you can get just 5, what with all the noise and the people coming and going, my second was my cigs, especially since using my wheelchair is now so hard. In the last 13 years I have been in hospital 4 times, 2 of them I was lucky enough to get a single room, but other two were hard and I wasn’t nearly as ill as I am now. No matter how they try, our medical system isn’t set up to deal with people like me, people who have a rare and difficult condition that takes over their entire lives, I did think after talking to Adam that it might help him, if I wrote down all the drugs I am on, what I eat when and when and how much I sleep, a care plan if you like. I thought about it and realised that it would make little to no difference, simply because when hospitals are built and systems set up for the care of people, those systems don’t allow for the likes of me. One day the medical profession may get around to talking to each other, but even then, with the pressure on the system and the huge range of knowledge they already have to remember, what is the chances of any of them being geared up for all the rare conditions there are out there? Little to none.


Please read my blog from 2 years ago today – 23/02/13 – Shopping trolley chairs.

I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain………..