The first six months

I’ve reached the half-year milestone! 😀 It was six months ago today that I was diagnosed. I’ve been told that in some forms of the disease where it is particularly aggressive six months is about all you can expect. But here I am still feeling generally okay in myself apart from all the upper limb problems I’ve previously written about. I feel lucky that I am not one of those poor unfortunate people with an aggressive form of the disease. But six months ago I had no idea what shape I would be in today because at the time it had felt like my world had caved in and whatever future I had would be brief.

Of course a lot has happened. I’ve seen the disease start to spread into my hands, my energy levels begin to dwindle and my weight steadily fall to a point where I have now lost just over a stone in muscle tissue. I’ve also given up two of the corner stones of adult life: driving and work, both of which I miss. But I am lucky too because I have a care network in place for when I need it and get regular visits from the health care professionals so I am not alone with this.

And I still have a lot to be grateful for too. I still have my mobility for example and I’ve not yet become imprisoned in my own home. Okay, I’ve got a lot of problems in the upper limb area which are making life (and you can choose your own word) ‘difficult’, ‘interesting’ or ‘challenging’ for me, but I think that if you are resourceful and determined enough you can overcome some of the daily problems either by yourself and your own ingenuity or by acquiring suitable gadgets or getting help from the experts who’ve been dealing with these sorts of problems the longest.

The thing about this disease is that everybody’s experience, or journey if you like, is different. A health care professional who came to visit me this week told me of a man she knew of who had MND for 10 years and was still able to stand and move about. I’d not heard of that before so it gave me some hope that maybe I might also be lucky in this way. Well there is no harm in hoping and without hope what is there left?

After sitting here and reflecting back on these past months I realise that things could have been so much worse and that life is not so bad for me at the moment after all. I am slowly adjusting to this new way of living and am of the belief that it is imperative to keep both mind and body active and not to let yourself stagnate and just give up.

And on the subject of ‘active’ how did I celebrate today? By doing a spot of gardening! I’ve been looking out my front bay window for weeks now watching the grass grow ever taller and saying to myself that I really need to do something about it. A couple of weeks ago I attempted to cut the back lawn and tidy up the borders a little but that alone really exhausted me and left me with no energy to do anything else for a while. So I was in no hurry to tackle the front lawn which after months of neglect through the winter had started to show signs of weeds beginning to gain a foothold. So today with the sun shining in a clear blue sky and being lovely and warm I decided I could put it off no longer. Of course the first hurdle I have to overcome these days is trying to get the garage door open wide enough so I can get in and roll the lawnmower out. With limited strength and movement that is quite a struggle. Pushing the lawnmower doesn’t present too much difficulty at this stage – just point your legs in the right direction and use body weight to move forward. Where it does get difficult is emptying the grass box which I had to do about half a dozen times.

A neighbour’s Siamese cat befriended me a few months ago and now often trots over to see me and have his belly rubbed and his fur stroked. I can always hear him coming because he has a little bell affixed to his collar which he’s probably not too keen on as it makes stalking the birds hard! He’s quite a friendly cat once we got to know each other but at first he was a bit shy and would run away when he saw me. Well when he trotted over his afternoon I thought he was actually going to help me for once. I said ‘come on now, you pull up the weeds and I’ll mow the lawn’! But he wasn’t having any of it was he? He just wanted to sit there under a shrub and out of the sun and just watch all the work being down. Typical! Thousands of years of pandering to these four-legged fur balls and that’s what we get. I blame the Egyptians, they started it thousands of years ago by worshiping to them. Of course they got a taste of something they like and now they won’t let go. Lazy little devils! 🙂

And now here in the evening it is very calm and peaceful outside. Just birdsong. No traffic. The lawn is looking a lot tidier (for five minutes) but I kind of miss the long meadow grass that was starting to resemble a field of wheat blowing in the breeze. My little house on the prairie! I feel tired but take consolation in the fact that once again I didn’t let the disease beat me or dictate how I lead my life. And I’m going to go on fighting it because life is precious and worth fighting for. Lets see what the next six months bring.

Mark

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