T is for…

T is for…

Of course T is for time. Tick, tock, around the clock, speedy, time!

Before I delve any further into this month’s subject though, I need to once again thank you all for your messages of support, for sharing my blog and most of all, for helping me create awareness of ‘the F word’ (Frederichs Ataxia). I can’t explain how much I value your support, it’s a medicine in itself!

This month, I have to shout out a special word of thanks to Roslea Shamrocks GFC who are very kindly donating the proceeds of their annual Christmas fundraiser to Ataxia UK. I am truly grateful to everyone at the club for organising this. Ataxia UK are an umbrella charity who aid in fundraising, research and development of a range of Ataxia conditions, many of which are rare and life changing.

So if you are out and about near Roslea on Christmas Eve, please dig deep and give what you can for this worthwhile cause. Every penny literally counts and it may even mean that someday I, or somebody else can thank you for contributing towards a cure for my ‘F word’.

The ‘F word’ to which I refer to lots is medically known as Frederichs Ataxia. Frederichs is a rare disease which progresses slowly to basically rob it’s sufferers of the ability to walk, co-ordinate movements or even talk or swallow. Lovey hey? Oh and did I mention? At present, there is no cure. Any why am I very ‘in the know’ about this lovely condition you may wonder? Well I have it. Yes me. So slowly, the ‘F word’ is working its magic on my body. And therein lies the reason that I want to think about ‘time’ this month.

So, that’s the nasty stuff out of the way, meaning that it’s time (pardon the pun) to get down to the nitty gritty of this month’s post.

Having been blessed with our little man, Tíernan, in May past, I literally have never experienced time to fly so fast! Maybe it’s because as all parents will know, having a baby means your ‘me time’ is cut short. Maybe it’s because you are always looking towards a new milestone. Or maybe it’s because in no time at all, your baby grows and develops to look like a little person and not that tiny bundle they once were.

Whatever the reason, the whole process has implored me to take time to reflect upon how quickly time actually flies past and equally how it is so important to live in the here and now!

To be fair, ‘The F Word’ has a big part to play in my reflection upon time. Did I mention that amongst all those other lovely symptoms, Frederichs also cuts short it’s sufferers ‘time’ in that your life expectancy is shortened?

In reality though, and as morbid as it may seem, none of us really know how much time we have ahead of us. Yes, as a Frederichs patient, doctors have said that my ‘time’ may well be shortened. But they also give you lots of worse case scenario stuff, so I cling on in hope that my symptoms will take along time to worsen and thus give me more time to live.

Who knows. But one thing I do know is that the rose amongst the thorns in this whole scenario is that I now value the present, the here and now and I look forward to the future in hope.

Something like ‘the F word’ forces you to make sure that every minute counts. I now value the small things much more than I ever probably did before. For me, those small things have most definitely become the big things! Spending time with friends and family, taking time out to enjoy the world, having fun, to name but a few! These things might seem trivial and in today’s world, you could be forgiven for thinking, “I don’t have time for all of that.” But seriously, we NEED to make time!

Lots of things take over, work, money, routine. But what I’ve been thinking lately is that when our time continues to fly (which it will) will we look back and think, I’m glad I worked all those hours around the clock and missed out on family things?Or yes, I’m happy I stayed at home to clean and tidy rather than go out with my friends. Or even better, it’s great having all this money in the bank, but now I’ve nothing to spend it on?

I’m not saying that these things aren’t important, of course they are, but within reason. Time does not stand still or stop (I’ve asked Tíernan to pause time and to stop growing for a bit, but that doesn’t seem to work!) So it’s so important to reflect on what really is important in your life and spend time on that, all the other stuff should fit around that.

‘The F word’ has certainly made me live like this and Tíernan has reinforced this notion even more.

I think this post is quite apt on that we are fast approaching a time of the year (Christmas) when it is so easy to get caught up in all the hype and of course, it’s so easy to confuse what seems important with what is actually important.

So this year, I’m concentrating on those small things, the things that mean the most to me. I’m not allowing ‘the F word’ to rob me of time and instead, I’m continuously reflecting on my time and making the most of it.

It’s funny really because naturally, I can be a bit of a ‘stress head’ but my condition is weirdly helping me to stress less in some cases. When I start on a ‘spiral of stress’, I usually have two things in my ear.

1. The first is commonly my husband, Seamus, telling me not to be so silly and to stop panicking.
2. The second is quite often the voice of ‘the F word’ inside my head asking me, “in the grand scheme of things, is this really important?”
Guess what the answer usually is? You guessed it- Of course it’s no!

My point is that we all have our own challenges, trials and tribulations to deal with. We can do two things.

1. Spend time fretting over whatever it is and before you know it, time has passed, you’ve blinked and missed it.
2. Learn to deal with whatever it is and make time. Do what you enjoy. Spend time on those things that are important to you.

Now before I leave you, can I make a cheeky request and ask you to spend a moment of your time thinking of me and my ‘F word’. Please continue to help me spread awareness of this horrendous condition and maybe one day, collectively, we can ensure that this ghastly disease steals less time from its victims and that we can find a cure!

Until next time, I wish you all the happiest of Christmases and best wishes for 2017!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s