What is going on?

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..

A night to forget

Today is going to be hard, I have just gone through the worst night I can remember for years and I didn’t even have any warning, in fact I thought it would be the total opposite. I suppose it really started at 6 pm when my three days of taking laxatives actually finally worked properly, there had been nothing since the tiny amount 48 hours earlier. You don’t know until you have lived with bowl problems, just how difficult they make life. I was on a high, delighted to for the first time in a couple of weeks to have a soft stomach and to know that that was it over for another week, I have no intention of not taking my laxatives when I should, ever again. The evening went well and for me was a good night in front of the TV, well it was “Strictly come dancing” night, what was there not to enjoy, although I was a little concerned as to why I hadn’t been back to the loo at least once, a small amount of diarrhoea is normal after that quantity of laxatives. I went to bed at my normal time of 9pm and once I had beaten my pillows, which had already disturbed my afternoon nap into submission, I went into my normal deep sleep. I woke with a start at just before 2am, it wasn’t pain, but the sensation of something small having escaped my bowel and now caught by my buttocks, trust me when I say getting out of bed, across the room and stopping to put on my dressing gown, whilst holding your buttocks as tight as possible out of pure fear of what might happen to the cream carpet, isn’t easy. What left me was almost pure water and clearly not the small amount I had expected and I knew then that my night was going to be disturbed at least one more time, the past has taught me that much, when that happens, getting to the loo becomes a must manage event at least once or twice more. 2:20, 2:45, 4:00 and 6:15 all found me once more making the journey across the width of the house, what had gone wrong and why it had all taken so long to have any effect and for it them to land up with this violent result, screams to me that I am right about what is happening to me. Even allowing for the laxatives, that without nothing was happening, this isn’t the normal action of any digestive system, even now at gone 10 am, I still don’t believe it is over.

All of that is bad enough on it’s own, but it isn’t what my bowels were doing, more the knock on effect that is the real downer, nothing happens in my life that doesn’t have a kick back from my PRMS. Right now I am in pain through out my abdomen, I don’t think there is any of it that isn’t at best aching or at worst passing on real pain, the spasm in the upper section are continues and almost in sink with the ones in my diaphragm and I am feeling sick. I did manage to eat my breakfast although I was in two minds as to whether I should eat or not, right or wrong it is done now, but it was as I took the last mouthful, that the nausea appeared again. It doesn’t take a genius to know that I am also really tired, disturbed sleep isn’t good for anyone, but it is a nightmare for anyone with MS. Sleep has to be the most important element to dealing with the whole thing, that I have found. Lack of sleep makes life tougher for anyone, but I have found that it raises the pain levels, brings emotions not just to the surface but above them, all brain function seems to take longer and it enforces speech and memory issues, today is going to be fun. I know some will be asking why I don’t just go back to bed and get some more sleep, that is actually the worst thing I could possibly do. Last night may have screwed things up for me, but if I went back to bed now, it would push me out of routine for several days, which brings a whole new range of problems. Breaking routine is a bit like inviting all the worst part of PRMS to have a party, I would far rather have one day of feeling sorry for myself and not really up to much, rather than a week of it.

If it ended there that would be bad enough, but there is one more thing that my nocturnal wanderings have done, they have caused pain and fatigue in all my leg and arm muscles. I walked further last night than I normally would in a normal day and half of the steps I took were taken with added urgency, something I don’t do that well, normally I move somewhere between normal and slow, fast hasn’t been in my life for a long time, neither has speed dressing, but both were forced upon me last night. Nothing comes easily in this world of mine, it seems that there are no easy answers either, if I don’t take medication to deal with my now almost stopped intestine, I would land up eventually in hospital, if I do, well this is the result, it would be nice to just once have a win win situation open to me. It really can feel at times like I am beating my head of a brick wall, just to be allowed to hold steady for a very short period of time. When I do get a few days on the level, there is something like this waiting at the end of it for me, don’t get me wrong, I am not feeling sorry for myself, no it is more that I am just a bit fed-up with it. I guess that is probably more down to my lack of sleep, rather than a true feeling, as despite a million reasons to feel like that daily, I very rarely do.

Tomorrow will be another day and with a little luck I will get through today without to many more problems, I am tempted to take a booster pill to deal with the increased pain, but I fear that with me being so tired, they might just push me into sleep, best to just go with it and hope. I normally find that is the best way to deal with days like today, look for the good spots and hope they start to increase in number as the day goes on.

Read my blog from 2 years ago today – 7/12/12 – Three in a bed

I’m fighting to stay awake today, I have lost count of the number of time that have found myself propping my head on my fist, with my eyes closing or closed when I notice, I am once more trying to sleep. Last night I managed…..