The ticking of time

There are so many points in life when you just tell yourself, things will never be the same again. Of course, they are not all bad, in fact, some of them are wonderful, like the day you hear the words you thought you never would “Here you go Mum, meet your daughter”. Clearly as well, they aren’t all as major as that either, even tiny things can make you realise that you have once again, passed one of those tiny milestones, that are scattered through our lives. Some make us laugh, some cry, some are just noted with a sigh and some, well they’re just marked with the nod of our heads and the acceptance that it’s just a point in that process of ageing or another part of the story of our health. Which actually category this fits into, I’m not totally sure, is it just age, or is it more part of my body falling apart due to my health. Muscle weakness is very much part of my health, but the longer you are inactive, well the weaker those muscles get. For a long time now I have been more than aware that my stomach isn’t as flat as it once was, yes that was said tongue in cheek, it’s so far from flat that anyone can see it. A large part of it is clearly the weight I have gained since my mobility left, another, is the total lack of toned muscle to hold everything just where it should be. I hadn’t though, realised just how bad it had become, until last night.

Over the last couple of years as you know, my PRMS has gone to town on my intestine, causing me all kind of problems, most now under enough control that I am more than coping with them. Last night, I was suddenly in pain in my lower right side. Pain is nothing new, but in that exact spot and as intense as it was, was most definitely new. It didn’t matter how I shifted around, change position or anything else, it didn’t change. I had been on my feet a couple of time, during my transition from wheelchair to chair and back again, but even that movement did change it. I knew my bladder was empty, although that didn’t stop my trying again, just to be sure, as I know from experience that an over full bladder can cause pain of all sorts, and not just where you’d expect. When I got into bed I was hopeful, that just lying down would be enough to relieve it but it wasn’t. I had already swallowed a booster pill because of it, as it was honestly that painful. There was little left to do, other than the totally normal thing we all do to pain, poke at it. I have never been that sure why we do such an obviously stupid thing, what on earth do we expect will happen, other than more pain? Anyway, after I settled back down, I took a more considered course of action, of gently applying pressure and pushing upwards on the painful mass. As I was slowing pushing towards my head, it started to slip away from me and settle backwards towards my spine, the pain was gone. A little confused, I started gently feeling around and I worked it all out. Somehow, a piece of my insides had hung itself, on my pelvic bone, the sinking back motion, was it settling into where it should have been all along. It was one of those silent moments, another tick on the list of things my body now needs help with, keeping my insides where they are supposed to be.

I guess it was always just a matter of time, as I have been pushing and pummelling the rest of it for years now. This was something new, but at least I now know if I am in pain like that again, lie down and gently press. The list of things that I have to do to just keep pain at bay seems to do nothing but grow. Lately, I have noticed that I am now actually feeling pain from my mini-spasms. I am used to having loads of tiny spasms a day, normally nothing more than an annoying tightening of a muscle anywhere on my body. The major ones don’t happen daily, but these mini ones, they are often just seconds apart and if I am honest, are now just part of the background of my life. A few months ago, I started to feel the odd one was producing an ache to go with it, others were showing themselves with a tiny burst of heat or a sudden stabbing pain. They still didn’t bother me beyond being annoying, but they too are starting to show themselves more and more. I don’t think that there is an hour now that passes without my having to sit and gently massage or apply pressure somewhere. I doesn’t bother me on the pain side, but it is one of those things that’s eating into my time.

I don’t think, that there is anything that my body can do to me, that upsets me more than if it finds a way of eating time. If I get a sudden bad spasm, well it’s over and done within minutes and my day goes on. You could say the same about the tiny ones, but it is the accumulative impact that is annoying me. Time to me is so precious these days. I have had to get used to the fact that I need to sleep so much, but it leaves me with limited time. It doesn’t matter what my PRMS has done to me, I have dealt with it with a smile on my face. Yes, occasionally, there has been the odd curse, but overall, I’ve just got on with it. To be honest, that is why my memory frustrates me so much. I waste so much time, having to repeat journeys, back and forwards to the kitchen three times when it should have been done in one. It is more than annoying, it’s enough to get me angry. I have always hated not having the time I want in any day. That is how I landed up years ago, just sleeping just 5 hours a night. I saw it as such a waste of time to sleep for even a minute, more than I actually needed. You can well imagine how I feel about the days when it’s 13hrs plus. Even my straight twelve and a half seems so ridiculous, but there is nothing I can do about it. I have never understood people who say they get bored, or they have nothing to do. How can anyone have nothing to do? I am convinced that as they are putting me in my coffin, that I will suddenly sit up and say “Just a minute, I have this or that to do first”.

Every day is too short, which is why, I am fighting so hard against something I think would actually do me good, getting more sleep. I can’t help wondering if the reason that I am finding so many things a struggle just now, is quite simply because I am tired. As I said yesterday, I could with ease just fall into bed and stay there. It is tiredness, not fatigue, I know the difference. If it were anything else, I wouldn’t actually sleep every single time I lie down, within seconds. If I wasn’t tired, I would just lie there. Like everyone else on this planet, that does happen occasionally, but they are so far apart that they aren’t worth mentioning. I have to restrict my sleep by setting alarms as if I didn’t, who knows how long I would actually stay there. It is one of those balancing acts, one that is so finely set and has worked for me now for about 5 years. I accept sleeping as I have just enough hours awake to be able to have a life. If I change that balance, then something else will have to go, but there is nothing, that I am willing to let slip from my fingers. Somehow, sleeping even for half an hour longer, would feel like a defeat. Like someone had ripped part of my life away and I would be left stranded and bleeding. I hate this illness. My current plan of action, well it’s to push on, to do what I always do and just hope that it sorts itself out, but I know that I can’t do that forever.


Please read my blog from 2 years ago today – 06/12/2013 – A scratch too far 

My bank has sent me this silly little thing they call a token, it’s about the same size as a credit card and looks like a calculator, but there are no plus or minus symbols. I haven’t been to their site yet….

Everything is going wrong

It is beginning to feel like the entire world is against me, my PC has almost die! It thankfully gave me a message yesterday afternoon saying that the hard drive was about to die, it was so late in the afternoon that there was nothing I could do about any of it, especially as I didn’t have a single blank DVD, all I could do was switch off and pray. This morning has been spent backing up everything on to the discs Adam went out last night to buy, it is times like this, that you are suddenly really glad that supper markets don’t just sell food any longer. I now have 6 full disc so if it dies at any point now, I at least have the tools to fix it. I am guessing that it will be a case of having an engineer here on Monday to fit a new drive and this time put everything back on it, as spending another week going round and round in circles and driving myself mad.

I am actually beginning to feel really ill thanks to all of this, as I said yesterday it is really draining and thanks to that, I feel as thought I don’t have full control of anything. In the past few days I have also had another problem which I am sure is behind part of how I feel right now. I think it was on Monday that I suddenly needed to go to the toilet, to my surprise I didn’t have the usual process of having to sit there and wait while my bladder drip by drip emptied, but not this week. I found that it was gushing out of me and there was some but not serious pain at the end, to confuse me even further the same sharp pain was just at the opening to my bladder, but it spread out to the top of my leg and was also in exactly the same place in my bowel. All week it has been the same, regardless of which I have emptied, both have cause pain and just to add into this weir game, on Thursday I was on my way to the kitchen and I had to make a rapid detour to the bathroom, but not as rapid as I really needed. If all of that wasn’t enough, last night I wet myself while I was asleep. I woke due to the sensation just as it started, so it wasn’t that bad, but I have never done that before in my life although I have feared it would or could happen at any time, just part of the MS fun.

There is something about wetting yourself that feels as thought the worst thing in the world has ever happened. I suppose that it goes back to being a child and all the palaver of potty training, I’ve never even then wet the bed, but it still feels like I have done something terrible, when what I did was something uncontrollable. But I guess this means an other phone call to the Dr as there is clearly something wrong, I guess it will be more antibiotics. It is so easy for me to write all this now, but I can put a bet on it that when I have to vocalize it, I will find it incredibly hard and I will stutter and just hope he will get the picture.

Right now I have this great urge just to go to bed and sleep again, I could actually close my eyes right now and sleep sat here, that is how tired I am. All this extra work and constant brain bashing has affected every part of me. I hate it when my body want to close down like this, especially when I have so much to do. It is almost as though there is some part of me that avoids extra work, it has this much better idea, sleep! It’s 11:45 and nothing that needs doing on Facebook or Twitter has been done and I want to sleep! As I said at the beginning the world is against me, nothing is going the way it should and I have no control of any of it. May be sleep is the best option, as it is the only way that I can’t do anything more that might kill my PC for ever and to me one that doesn’t work well is better than one not working at all. I just hope on Monday it can be fixed and life will start to return to normal:)

Just too much

I realised last night that my toe nails were really needing cut and I asked Adam if he could cut them for me t some point over the weekend, he offered to sort them right then. It was at that moment that I said something I know I say to him again and again, but it’s a statement that along with the reality of the process, conveys just how exhausting life with illness really is, all I said was “I’m too tired”. If you think about it it is ridicules, all I was going to do was sit exactly where I was, Adam brings the basin of water, the towel, scissors and so on, I sit, he washes my feet and dries them, I sit, he holds my foot and clips the nails, I sit, then he clears everything up, I sit. So how on earth was I too tired to have it done? A question I can hear most, if not all of you asking. That is why I see it as a great example, I am so exhausted that sitting watching TV is actually the only way to stay awake and anything, anything at all, no matter how others might find it a relaxing and enjoyable process, is just to much to even consider doing.

Exhaustion should be an easy thing to explain and easy for other to understand, but I can say totally that never felt like this when I was still healthy. Exhaustion connected to illness has no comparison to the exhaustion from a day of physical hard work, some people will know the feeling if they have had a really bad dose of the flue. You are so over powering by it, that if you looked out the window to see an open suitcase filled with money lying in your garden, you would just shrug your shoulder and return to sitting or lying down, you wouldn’t even have the energy to get out there and claim it as yours. It is also a really difficult part of all illnesses to manage, if you don’t manage your day will be unbearable and you would soon retreat to just staying in bed. My days are clearly split into sections, but the biggest thing that you have to add into your life is planning, planning of every small action so that you save energy and don’t waste more than is needed.

I am sure that those who are able bodied don’t think about any of the things that I have to plan out and monitor every hour of each day. The greatest thing is grouping, just because your glass is empty doesn’t mean you can just get up and fill it, if you did what you want to when it needed doing, well you would be a wreck before you know it. Fetching a drink has to be grouped in with other activities, so you wait until you also need to go to the loo, or to fetch food, brush your hair, or have a wash. No journey can be for just one thing, by grouping you save energy and limit the pain that is caused by moving around. Whether it is to sleep or not, it is essential to lie down for part of the day, just so your muscles are more rested, as don’t forget sitting still is not still. Right now I am sat as still as I normally am, the reality is that with reduced core stability and twitching of nerves and muscles means I am never actually still. It takes concentration to be truly still, a lot of concentration unless my body is braced by cushions or best of all a mattress, bracing removes the worst and most jerky upper body action but it is not a cure to it all by any means, uncontrolled movement is inevitable, that movement uses energy with no positive outcome of any sort.

When my body first started it solo dancing it was the first noticeable symptom to the outside world, so in some ways it was a blessing as combined with my walking stick people started once again to see me as human, not a drunk you should be shunned. Using my upper body strength for my wheelchair did actually at first help to reduce my twitching a jerks, but it was short lived, finding opportunity to embarrass me when eating or drinking. Hand tremors are bad enough, but when your body thinks it’s a good game to play, well food didn’t always reach it’s destination. I found a ways round it by sitting on the settee with a cushion on my knee and the plate on top, this brought my food nearer to my mouth and with more chance of staying off the plate. I now mainly eat at my desk, it is higher than a dinning table and I have the added disguise of being behind my computer screen.

There is little of what would be describe as everyday activities that are any were near there original simplicity. Washing, dressing, eating all have had to be changed, worked on, assessed as to exactly what price they claim from your reserve of energy, even actions like having a pedicure were your input is limited, but still required, may be enough to use that last speck left and the price would be once again to go to bed.