The good, the bad...pages 79 to 87

February 2005

This month is not my favourite month, all heat and humidity makes Jack a listless boy. The first three days the temperature was above 30c and there was hardly any breeze. Going for a quick cold shower became a joke, the relief didn’t last long. So I had to resort to the bare minimum of movement and wait out the heat. The minute the temperature dropped below 25c I was up and ready to go and do anything, the only problem was, everyone was in bed. I didn’t want to be unpopular and wake everyone up.
My exercising has been kicked under the bed for the time being, out of sight, out of mind. Just walking down the passage depletes my energy. It’s funny, my mind says “Go for it, there is nothing wrong.” My body says “Hold on there buddy, this is not on the agenda for today.” It’s rather like the cell phone message “The number you have dialled is not available, please try again later.” It’s so frustrating that you want to shout and scream. Then I take a deep breath and calm down; I’ll try again later.
12 February 2005
Today is the first day, since I’ve been back from Switzerland, that it has been so cool. The temperature hovered around the 23-24 degree mark. I know that to some people it is still warm, but to me it’s like the fridge door has been opened. The humidity has diminished somewhat; it is as if new horizons have opened up to me. I have no problem getting up and walking around the house, no serious hanging on to the door frame or wall unit. Just a light touch to keep my balance. It’s amazing; the only time that I have to touch or hold on to something is in a narrow confine. Give me wide-open space and I can move around without fear of falling over, my balance is not a problem. Maybe I’m so used to bouncing off the walls that my brain is stuck on that notion and every time I come close to one I have to hang on to it. I know that one climbs a mountain because it is there, but does it really mean that because the wall is there, that I have to go across and touch it. Weird.
Everything else falls into place during the big cool. Walking is one thing, being able to stand in the kitchen and make a sandwich. Well, I call that extreme. All the stiffness disappears, my fingers work and the huge weight of humidity is lifted. Skiing down that slope is definitely in sight.
16 February, 2005
I got a call last night from an old colleague. We were in the traffic police together from 1982 to 1995. I left; Val is still there. We reminisced for a while until all of a sudden she blurted out that she had just been diagnosed with MS.
That sinking feeling crept in to the pit of my stomach, it’s one thing having it yourself, but someone you know getting it as well. Statistically, in this country, the odds of that happening are minimal. This disease is on the rise, more and more people are being affected by it.
I’ll see Val on the weekend; hopefully I can be of help to her.
21 February, 2005
Val and her partner, Marie, spent the day with Glynn and I, yesterday. They have read my diary and Val said that they both have a better insight in to MS. We had a general discussion about MS and how too live with it and not fight it, how to sit back and think about things and not make hasty decisions. I’ve made a few decisions that ultimately have been costly and down right stupid. We live and learn; hopefully I can help Val around these pitfalls.
It’s amazing, MS has been around for a long time now, you would think that by now the medical specialists would have a kinder outlook on the newly diagnosed and take a bit of time to explain these two large letters. (I’m generalising here.) They sure enough charge us a hell of a lot to find out what is wrong with us, then it’s basically go home and live with it. I’m really lucky to have someone like Beth around, just a phone call away. Never has anything been too much trouble or unanswered.
Val, I will try and help where I can, don’t be afraid to call out.
27 February, 2005
Ok, so I’m still harping on about the heat but it’s not just me. Glynn is complaining about it, everybody I know is complaining about it. Even my dog. For the last few days, my feet have been swollen to almost twice their normal size, walking is comical. It’s not that my legs don’t want to work, it’s that they stay rooted to one spot. I don’t have the strength yet, to pick up a foot that’s full of water. Of course, not exercising like I was last year is not helping one bit. Roll on autumn and the cooler weather.
Something else I’ve picked up on my journey, is the way I utilise my own self-help. It’s one thing to have furniture, handles, bars etc, strategically placed. It’s the way that they are used that is the trick. When you rely on someone or something too much, you begin to forget how to do it yourself and your mind tells you that it is easier if you rely on the help. I’ve managed to turn that around and when I’m up to walking through the house I refuse to allow myself to put my full weight on an aid, that includes my walking stick. My brain screams out for me to use the item to its full extent, bloody thing’s got lazy over the last 5 years. Giving in is not an option; I still remember when I used to ride horses when I was younger. You fall off, you get back on. This is basically the same, I could walk before this, and I’m going too again. That fleeting touch on the table or wall or what ever, gives enough sense of security to allow me to move on to the next step. That security might be false, who cares? Mind over matter. Put all this together with not thinking about walking and we may actually get somewhere, albeit slowly.
We are now up to the six-month mark. From being on a nasty slippery slope, I am now on a gentle incline that may have it’s rough sections, but it is mountable. There may be areas where I slip, but it is only a step or two. It’s a case of taking a breather or two, then trying again. I have absolutely no fear of facing a new day and challenges are no longer daunting. Depression is in the past and I’ve left that bad weather behind, what ever is in front, well, I’ve got the right gear for it now.
I still have moments of amazement and wonder and joy. From moving a toe to clenching them tightly, to forgotten feelings and sensations that get renewed, to feeling my nervous system awaken. This is a journey of discovery and I like it.
Am I still pushing the envelope? This month, no. For once, I pushed my stubbornness aside and listened to those close to me. I’ll probably have to shove two fingers in the fickle face of fate next month just to remind her who is in charge.
Being in a wheelchair occasionally has some great advantages for me, although I have too admit I use it with some reluctance. But, when it’s to hot or I’m tired, or I’ve over done it, it’s a welcome relief to sit for a while. I keep that little bit of independence to myself, and anything that I need, is attainable. The fridge, the shower, the toilet, and the best of all, the flowers in the garden. I get to smell them once in a while. That’s a good reminder that one day I will saunter over to the flowerbed and take a good sniff. But, there are some disadvantages associated with a wheelchair. Everything is at the wrong height barring the odd table. Every time you need to go somewhere you need two arms, it’s not exactly easy to juggle a hot cup of coffee and wheel ones’ self single-handed. Talk about running circles around the topic. The counter tops are about 100ml to high and you find yourself working with arms at shoulder height no matter what you want to do. The act of making toast becomes an endurance feat and just as your arms are about to fall off, that last piece smeared with soft chocolate detaches its’ self from unfeeling fingers and floats down to the floor. Now, Murhpy steps up to have his say. The toast naturally lands upside down right next to the front wheel of the chair. The one that‘s on a swivel. No matter which way you turn, the toast with chocolate on is ground in to the tiles. You make your way to the sink to get a cloth, as you come back you see a new design on the kitchen floor. There’s chocolate all over the tyre and wherever you go, there’s a trail. Cleaning a floor from a wheelchair is not fun but it’s laughable. When all is said and done? You still have the first slice of toast, it just happens to be cold and tough. Of course the thought crosses your mind, “And I did this why?”
Opening fridge doors cupboard doors and drawers need precision driving. You are always in your own way; fingers get caught between wheels and doors, doors bang on to knees and drawers pinch fingers. The fridge door has a nasty habit of opening on to my face, at least the ice is right there to stop the bruising. Who the hell would believe me if I said that the fridge gave me a black eye?
Yeah right and pigs can fly.

MARCH 2005

02 March 2005
Today one year ago I received that phone call asking if I knew who I was. I’m certainly not the same person now. I was already in a down wards spiral, emotionally, physically and mentally.
There’s no understanding the huge scope of life and why things happen when they happen. Every thing that has happened since has been for the better and there is no turning back. I now know who I am and where I’m from, I don’t harbour any grudges and I don’t hold judgement over anyone. Debs, you threw me a lifeline without realising it, I won’t be letting go.
Last months diary was given a critical comment by a friend of mine. On paper I was given a kick on the backside and I felt it. Annie is for the most part permanently in a wheelchair. After an accident, Annie was told that she would never walk again. Well, she’s beaten that one. With the aid of crutches, Annie can walk about 120m. My half-pint Annie is one tough cookie. Annie, I know you have called me your hero amongst other things but you really are an inspiration to me and you are my hero. I know how important exercise is, especially to you. I won’t kick it under the bed again. Thank you for the wake up call.
07 March 2005
Today, I’m a bit slowed up. Saturday the 5th I went to watch some rallying. There is some thing about high revving engines, quick gear changes, and cars sliding sideways and thick dust that gets the adrenaline pumping. Of course eating dust is not pleasant, but it’s bearable when you are having fun. The loud noise still creates discomfort for me; I get disorientated and loose sense of where the sound is or what it is. The worst is when there are a lot of people talking at once with background music; I get totally lost and battle to follow a conversation. It’s not as bad as it used to be and my hearing is readjusting its self.
For once I spent the day outside all day, I had a shady spot close to the road and although it was really hot, humidity was not a factor as we were far enough inland not to be affected by it. I still managed to get sun burnt legs and I’m paying the price now, but what's a little discomfort for having a great day. True to form, it doesn’t take forever to get back to a semblance of normal when I’ve over done something.
Thanks to Annie’s little lecture, I’m back to exercising. I’ve gone one step further; I’m exercising morning and night. Night time’s a breeze, my muscle are nice and loose and the squats and ankle raises go without a hitch, sit ups are still a pain in the butt. I can manage to lift my shoulders about 2 inches off the floor, it’s going to take a while to do a full sit up. First thing in the morning my leg muscles are fairly stiff and it takes a while to get everything in order and moving smoothly. I don’t do as many repetitions with squats, but the ankle raises are cool. Sit-ups? We don’t go there yet, give me a few days then we’ll talk.
10 March 2005
I woke up this morning with a whole new attitude towards my life with MS. The limitations on my physical abilities are no longer a bugbear. So I don’t walk properly, or very far, or for very long. Big who cares? It is still a goal of mine to walk better than I am now, but it is no longer a frustrating effort. The same goes for all the other little things that aren’t quite right. I refuse to let MS control me, I control it. The stem cells continue to give me a boost mentally as well as physically. I feel on top of the world and I have taken back my life. Am I still going to push the envelope? Most probably. Why? Because I can, not because I have to. Am I going to ski at the end of the year? You bet!
Everyone still asks about stem cells and the improvements to me physically. Mentally, when I’m asked that question, I have to take a step backwards. I have got so used to the feelings, sensations or lack there of, that it is all second nature to me. It’s funny how when you are used to something, you dismiss it because it’s so normal.
So what is the difference between now and six months ago? Mentally, there is a 100% improvement; there is no doubt about that. The many people that I talk to, confirm that. They hear and feel the difference in me. My positive attitude plays a major role here and I’m not going to give it up. Physically, in my opinion, I’ve an improvement of about 60%. That % is still going to change. It’s not over till the fat lady sings.
I still get the electric like impulses along my arms and legs and the odd muscle twitch, always at the most inopportune time. Typical, I reach for the mug of coffee on the side table, as my fingers close on the handle, my arm jumps. Say no more.
I have regained most of my strength in my arms and hands, my fingers like to have a work stoppage every now and then, but I am regaining use of them. I can actually use a screwdriver now, although it does take more than one attempt to unscrew some thing.
My legs are slowly regaining their strength but the consistency of my muscles from calf to thigh is like soft putty. There is still a lot of work to do here. On occasion I can move my ankles and rotate them and this is generally in the cool of the night. The mere fact that I can clench and unclench my toes, is unreal. It’s surprising how useful your toes are.
My balance is not fully back with me, it’s still AWOL. I wobble a lot and have heart-stopping moments now and then. But, I don’t fall over as much, it’s averaged out at once a month compared to once a week 6 months ago. I no longer look half smashed first thing in the morning, maybe it’s only one to many. I still have to touch a wall, just because it’s there, but there is no hanging on for dear life. Couple that with my speech, which has returned too normal and I’m no longer legless in the flowerbed. I’m still not saying whether I was, or I wasn’t.
My vision is back to normal. No blurred or double vision. It still amazes me that I renewed my drivers licence without a hitch on the eye test last year. We won’t talk about the fact that I haven’t been able to drive a car for 3 years. That’s all about to change, by next month I’ll have hand controls in the car and I’ll be styling.
Surf’s up dude.