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03 September 2004
I managed to brush my teeth in a normal fashion yesterday; no propping myself up on the basin and my knees didn’t buckle under me. I usually wind up half way to the floor and when I pull myself back up I have this fear that I’m going to pull the basin off the wall. It was only after the fact, that it occurred to me that I had done something without a hassle.
During the day I did my stand up without wobbling routine a couple of times and then I thought what the heck, I just had to try a step or two. I parked next to the kitchen counter, stood up, and with one hand on the counter took three slow steps, turned around (with difficulty) and took three steps back. There was no dragging of feet; I actually managed to lift them off the floor. Three steps were more than enough, but the effort was worth it. I did it again in the evening to show Glynn, I got a smile and a comment…. Am I pushing the envelope? Probably. Am I going to stop? Not a chance.
This morning I woke up to no tingling in my hands again, it took about 15 minutes before it came back; hopefully it will take longer each day. Did the teeth routine, no problem, that’s old news. Am I going to try some steps today? You bet.
04 September 2004
My body is slowly getting used to the fact that there are no more sleeping pills, and although it takes a while, I do eventually fall asleep. I’m not waking up during the night as often as I used to and the muscle spasms are down to about three episodes a night. They are not as violent as before, they are almost bearable.
I still have poor circulation from the knees down, my skin is icy cold to the touch and my feet are blue. It takes forever to warm up in bed. By morning my left foot looks like a piece of rare beef and is warm to touch, the right foot has this blue marbled effect and is still cold to touch. By midday the left foot slowly turns blue, but that was longer than yesterday. I’ve got wait for the right foot to start doing the same.
I took one crutch yesterday and walked up and down the lounge, about 8m in total. It took a good few minutes and it wasn’t so easy to turn around. I’m still dragging my feet on the turn. Walking forwards I managed to lift my feet off the ground. I obviously pushed a bit too hard, as by the time I sat down my legs were like jelly. I stayed put for the rest of the day and only got up through necessity.
Today is Ross’s birthday. He was up bright and breezy and naturally the whole household has to follow suit. Within half an hour the lounge was strewn with wrapping paper. There in the middle of all is an electric racing car set. This is now Dad’s job. My fingers don’t work at the best of times, but they haven’t realised that I’m up and about yet. The tingling is still missing in action and they don’t flex too bad either. 15 minutes later Mr Tingle comes knocking at the door and the fingers start to slow down. The big pieces are easy; it’s the small bits that make me mutter under my breath. But, hey, what do you know? We got there, and Ross is now a hooligan on a racetrack.
I’m going to sit quietly today and stay out of trouble; I might take a few steps this afternoon.
05 September 2004
I spent most of yesterday afternoon in a lounge chair relaxing. Towards the evening I started to note any changes in my hands, arms and so on. Upon checking my feet I found that they were a light pink colour instead of the dark blue they normally are. They were still icy cold to touch but at least the colour was coming right. Right then I didn’t think any more about it, my circulation was improving and that was enough.
A little while later, I got up, grabbed a crutch and sauntered through to the kitchen, at least I thought I sauntered through. In reality, I took slow and careful steps. Half way into the kitchen I stopped and leaned nonchalantly against the counter. I had to make a comment, “Hey look Ma, no hands”! I turned and made my way back to the lounge. I was glad to sit down again; the legs were starting to wobble. The upside was that I had almost doubled the distance of my first walk.
Last night wasn’t to bad; I climbed into bed and had, about half an hour of muscles twitching wherever they felt like it. It took a while to fall asleep and I only woke once during the night. My muscles only went into spasm once, as I was trying to get out of bed in the morning. Hopefully these spasms are going to be a thing of the past, they are not that painful anymore, just irritating. Especially when you are trying to get out of bed, no matter what you do, you can’t bend your legs; you just have to wait it out.
06 September 2004
Yesterday there was quite a drop in temperature, which is never good for me. My nervous system slows down and my legs and arms don’t want to work. I spent most of the day in the wheelchair.
I kept an eye on my feet during the day and have now come to realise that, all though MS plays a part in my poor circulation, the wheelchair is also a factor. The longer I sit in the wheelchair, the darker the hue of blue on my feet. In a lounge chair, the worst that it gets is a light blue. Just another reason to stay out of the wheelchair.
I am slowly regaining my bladder control, no longer do I have to go to the loo after every drink that I take. Two or three glasses of water or cups of coffee and only then, do the alarm bells start to ring. I still find that I have to get to the loo as soon as possible, but it is not the mad rush that it used to be.
I only woke up once during the night last night and again had one incident of muscle spasms when I was trying to get out of bed. The tremors that I used to get in my legs are also disappearing, no more breakdancing. Just my right leg bounces around on it’s own for a while in the morning.
It’s too cold to do anything today, I’m going to sit and stay quiet and keep warm.
07 September 2004
Yesterday was cold, wet and miserable. Not good for me, I tried to keep warm. My feet were like blocks of ice. I didn’t attempt to do anything other than sit wrapped in a blanket. I slept fairly well last night inspite of the fact that there were blocks of ice at the bottom of the bed. The only problem I had was trying to get up in the morning. I had tremors in both legs; they wouldn’t stop bouncing around the bedroom floor. I haven’t any strength in my legs, so I am not even going to attempt to walk today, at least not this morning.
It’s now 11Am and things are looking up, the sun is shining and the fickle fingers of Mother Nature are drifting away on the breeze. My feet are now out of the Deepfreeze and in the fridge, I’ll defrost them soon.
08 September 2004
I walked around a bit during the afternoon yesterday, or should I say shuffled. But at least I was out of the wheelchair. I managed to stand at the front door and view the garden and the sea without fear of falling over. Admittedly I get tired very quickly, but each day I last a little bit longer. I have never felt so tired at the end of the day as I do now, by 7 in the evening I’m yawning my head off.
One big plus for this last week is that I haven’t had any medication what so ever, including painkillers. There used to be days that my whole body was painful and I would take a couple of capsules. I would float better than Ali would; I just didn’t have the sting. I don’t get that sort of pain now, what I do get is easily handled.
I’m not going to continue this diary on a daily basis as I feel that I will start to repeat myself. What has happened in the last week is already a big step forwards. I realise that, even with my high expectations, to get out of this chair, and stay out of it, is a major hurdle. It’s not going to happen over night. Give me a few weeks, then we will talk again.
Over the past year, and especially the past week, I’ve had a lot of support and encouragement from many people. Most of you know me, some don’t. My heartfelt thanks to you, you have no idea what it means to Glynn, Ross and myself. There are too many of you to name and thank personally, but I feel that I have to mention 5 particular people.
To Laura, after thirteen months of ups and downs, you came through for me and made Stem Cell Therapy available to me. Thank you.
To Debs, you came in to my life in unusual and difficult circumstances. You didn’t let that stop you from getting to know and support me. I’ll see you in a few weeks little Sis.
To Glynn, my wife of 16 years, the last 5 years of our life has been unusual to say the least. You have weathered the winds and storms, and like the long grass, you have bent in the gales, and when all was calm, stood back up tall and straight. Thank you for being there for me, no matter what.
To Ross, you have had to grow up quickly because of my MS, and you have done so with fortitude. Whenever I have had a rough day, nothing has been too much for you. When I get up and walk around now, the smile on your face says it all for me.
To Beth, you are a very special and very exceptional person. Not only are you my Doctor, you are a true friend. Thank you.