29 March 2011

Today is (another) wonderful day. Today my hallway is embellished with a slick shiny black electric wheelchair. I fancy that I may nickname it 'Old Smokey'.

It's hard to describe (much less explain) the breadth of the smile across my face. Why on earth would I be so happy at the arrival of something that so clearly marks my descent? Well, because it doesn't. Not to me at least. It symbolises another 'tool' in my arsenal of weaponry in the fight to maintain my independence. It is quiet and smooth and re-opens all manner of doors to me.

It has been a long time coming, but it's here.

16 March 2011

I was asked today about my dreams – what dreams do I have that are as yet unfulfilled.

I thought long and hard, and realised that so many of the dreams I used to have will never come true.

One of the toughest and yet easiest decisions that I have made in recent years was to have a vasectomy. It was tough because I know that I could produce beautiful children (only boys, but that is nature, apparently). I loved the process of bringing them up, helping to shape them, helping them to become independent-minded, to realise their dreams.

But I knew that having more children could never be the same. Even my 'almost' daughter, who shares with me fond memories of me swinging her up on my shoulders and carrying her around Darling Harbour, has blessed me with experiences that I will always treasure, but know that I can never repeat.

I feel that MS has robbed me of so many choices. Perhaps many of them I'd never have made, but I'd like to have had the choice.

Do I regret it? Well, a little, perhaps, but my life is so rich now, so filled with different choices, that it's hard to have regrets or to feel resentment.

My hero, the late Johnny Hicklenton, put it so beautifully when he said “I look at kids playing in the street and I think, thank god for your myelin sheath that allows you to do the things that you do”. It's not hard to hero-worship someone who felt the same losses that I feel, yet still adapted to do the fabulous things that he could do.

I may have lost some of my choices, some of my dreams, but there are still so many that remain.

10 March 2011

I have realised that my biggest problem is getting things done. I am sitting beside a whole heap of papers, all that need dealing and yet... I only seem to have the energy/concentration to deal with one thing each day. And, it seems. Each day something else happens.

It's so frustrating.

On the plus side, I think I have some progress on the funding for my FES. The nice lady from the MS Society phoned yesterday and she has spoken to my MS nurse, who is getting my GP to put in a formal request to the Primary Care Trust to fund it. I fear it may be the start of a long haul, but at least I have people on my side.

26 February 2011

I love rugby people. Period. They are the nicest, kindest, most caring people.

Why? Because, via a good friend, I discovered that the RFU provides free (yes, FREE) tickets to disabled people to matches a Twickenham. It's on a ballot scheme, so no guarantee of tickets, but today I saw England v France, from the front row, sitting in my wheelchair, my elder son beside me (as my carer) for no charge. Zilch. They even provided free parking. How many other sports even bother to think about doing that?

It was a wonderful experience.

And now I am looking forward to England v Scotland in a week's time.

I really, really, love rugby people.

3 March 2011

I was silly this morning. I knew from the moment I got out of bed that I was feeling more wobbly than usual, but still I soldiered on. I went into the bathroom, knowing that I was short on time if I was to make in to the dentist on time. So I kind of rushed it – obviously not in the way that a normal person would rush, but without the normal measured care. Big mistake.

My bathroom is bigger than a regular bathroom. It is a wet room, and houses my swanky plastic wheelchair (you haven't lived until you've had a shower sitting in a plastic wheelchair, trust me on that). Unfortunately, in trying to negotiate my way around said wheelchair, turning too quickly, I lost my balance. No biggie, there are plenty of things to hold onto. Well yes and no. I tried to use the wheelchair to steady me but, bless its plastic wheels, it can only get so much grip on the floor.

The result was that I ended up heading rapidly for the floor, with my cane and a catheter in one hand, and landed face down. It wouldn't have been so bad except, being tall, I rapidly ran out of space and hit my head on the tiles an the shower wall. Luckily for me. Newton's law of “irresistible force meets immovable object” takes no account of my having a hard skull. As a result, I was left lying on the floor, face down, between the wheelchair and the toilet bowl.

I was actually, perversely, quite happy to lay there. Given the choice, I would probably have had a nap and waited until I felt more like moving. But I knew that I needed to get to the dentist. So I girded my loins (whatever that might mean) and eventually hauled my bulk into something approximating to an upright position, and plonked myself, gratefully, onto the wheelchair.

I made it to the dentist, albeit ten minutes late. And discovered I need root canal work on one of my teeth. Oh joy. My cup truly runneth over.

4 February 2011

I saw the MS nurse today. It was, as always, a total pleasure. I guess that, like others, she can't truly understand what it feels like to have MS, but she sees so many different people that she has a wonderful knowledge of the varying degrees to which we are affected and how we feel about them.

So I now have a new drug (yep, another addition to my armoury of medicaments). Clonazepam should stop the tremors in my right leg that stop me getting to sleep. Along with the Gabapentin, they should ease my nights and hopefully enable me to get longer periods of continuous sleep – which I badly need.

Update: The Clonazepam seems to be doing its job. I am now sleeping much better. Thank goodness for MS nurses. My latest heroine.