N is for…

It is of course January and so ensues the customary ‘new year, new goals, new you’ posts – right? My question is, is it always that easy?

Before I get going with my latest blog though, I need to extend a huge and grateful thank you to Roslea Shamrocks GFC and for everyone who volunteered their time or donated their money at the Christmas Eve fundraiser recently. The venture managed to raise a whopping £2393 and €1695! As Christmas presents go, I have to say, this donation is definetly up there on my ‘top gifts’ list! Of course the donation itself is not directly for me, but this generous amount will now be donated to Ataxia UK where the money will be used for various, important and worthy ventures in a bid to find out more about Ataxia as a disease and perhaps even make developments in finding treatments or a cure. So words simply cannot express how thankful I and members of the ‘Ataxia Community’ are for your generosity!

So, now onto that blog…

Well I think at the beginning of every year, it’s natural to think about the 365 blank pages ahead, new resolutions, new goals or new aspirations. When you think of it, the ‘new year’ can be an exciting time. A time for setting ourselves up for the year ahead, a time for setting new targets for ourselves and a time for looking forward.

Indeed, this can be very exciting, some might say even exhilarating. But for many (myself included) such thoughts of the future can fill us with fear, dread and even worry. (Although if you follow my blog, you’ll know that I try really hard not to waste time worrying.)

However, I am only human and at times like this when people speak of the future with a degree of certainty, I have to admit, I don’t always share their enthusiasm.

You see, with a diagnosis such as ‘The F Word’, the future is not something which I always look forward to. In a way, my lovely disease has robbed me of that joy! ‘The F Word’, medically known as Frederichs Ataxia, is a degenerative disease which progresses with time affecting its sufferers in a multitude of ways. Whilst it is a rare condition, in almost all cases, the disease is known to progress, get worse and eventually rob people of their ability to walk, talk or even swallow independently.

Perhaps it is clear now why I’m not always a huge fan of looking into the future in such depth? If only I could freeze time. Yes, I may not be as mobile now as I used to be and yes, with ‘The F Word’, simple, everyday tasks are like a day’s work for me. But, at least I know what I’m dealing with. Talk of the future, quite frankly, scares the wits out of me because it’s sets me thinking; What will I be like this time next year? In 5 or 10 years time? Or even worse, will I even still be here?

However, being the thinker that I am I also think in contrast to all that and I actually ponder; Do any of us really know what the future holds for us? Can anyone actually answer any of my fearful questions with certainty? Actually, the answer is most likely, no! So with my positive head on once more, I have to say that whilst I naturally fear the future with ‘The F Word’ looming over me, I prefer to look towards the future in hope. Furthermore, above any of that, I deem it important to live in the here and now and savour the present as much as I can.

With that in mind, I have to say that all this has set me to thinking whilst I am out and about. I wonder, do we ever really take proper time to treasure the here and now or are we too caught up in our own little worlds to notice?

Now the pessimists of this world might see my diagnosis as a terrible infliction and yes, they are right. Nothing about Frederichs is good but in my mind, having a disease like this, in some ways allows me to view the world differently.

Whilst out and about recently, I’ve noticed that people are often always in a rush, there is always something to be done and that clock is always ticking. Perhaps it is due to our current political climate or economical changes but it is common to speak to people who voice a very negative and selfish outlook. With this in mind, I have to ask, when do we stop and really become aware of others around us?

I can honestly say that ‘The F Word’ allows me to stop and take count. When out and about or when talking to people, I realise that actually, there is almost always someone worse off than you. Unfortunately, this world can be a cruel place and if we allow ourselves to be consumed in our own little worlds within that, then the outcome can only be a selfish one. One of the positives with my diagnosis is that I am much more aware of people around me, whether that be their physical or emotional needs or both.

So, instead of letting 2017 scare me, my aspiration is not to set a new goal or resolution. Instead it is this:

I hope to continue to follow the year in good health (well as good as I can do) and I aim to continue to develop my awareness of others and their needs in a way in which can possibly help others in their everyday lives.

Happy New Year to you all and until next time, try to take time out of your world to appreciate the bigger world around you.


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