So I’m back and may I say, back with an almighty bang! I simply cannot believe the amount of positivity I received following my last post. Your feedback has been incredible to say the least! Thank you so much for all the messages and well wishes. Upon reading those, the only ‘F word’ I could use was most certainly ‘flabbergasted’ so you all really helped put the other ‘F word’, Frederichs, to the back of my mind!
Now that doesn’t mean you can do the same mind. Remember the deal? I want you to keep that old Frederichs Ataxia in your mind and help me spread even more awareness!
Just in case anyone reading this is new to my blog or perhaps you can’t remember, Frederichs Ataxia is a degenerative, genetically inherited, neurological condition and it impacts greatly on the lives of those who have it. To give you some perspective, I have outlined just a few day to day things I struggle with as a result of the ‘F word’.
Now it’s hard to beat a lovely warm bath or shower isn’t it? Well I couldn’t agree more but for me, either can be scary experiences. Try imagining doing either process totally blindfolded and on one leg. Well maybe then you might be close to feeling what I feel on my daily washing routine! Seamus, if you are reading this, that’s why I’m so slow getting ready, I promise!
Being from Fermanagh, I typically love a nice cup of tea but that old ‘F word’ means I can no longer safely carry my own cup of tea. So if you come to visit me, I might have to ask you to sort your own tea out. What a terrible host I have become!
Now that’s not to mention when I pop into a coffee shop on my own. It might be -5 degrees outside but 9 times out of 10, I will still order an iced coffee. Because I just adore the stuff I hear you ask? Wrong! It’s usually because I can’t deal with the looks of disgust, basically telling me off for being so lazy, when I might ask someone to carry my lovely latte down for me. Sure I’m young and fit, so I must be taking liberties right? Wrong! The only one taking liberties is that ‘F word’ because I now constantly walk like I’ve had a few sociables. (Oh yes, I have been accused of being drunk when stone cold sober too!)
That reminds me, the walking. Well, I just adore shoes! There was a point in my life where (my family and friends will vouch for this) I literally had a pair of shoes for every outfit and my motto was the higher the better! But of course, ‘the F word’ has struck again. Its lovely present to me means that all those shoes, those lovely shoes, are now boxed up and redundant because I can no longer walk in heels. “Big deal”, some of you might say, “I can’t wear heels for long now either.” But ‘the F word’ means I am restricted even in what type of flat shoes I wear. Now I challenge any fashion conscious, young lady to find trendy, on point shoes to accentuate an outfit, particularly for a special occasion! It’s hard, no it’s more than that, it’s actually nearly impossible!
Now I don’t want to tire you with all the negatives of ‘the F word’ because I’m not a ‘moaning minnie’ but to help you understand where I’m coming from, ‘the F word’ itself tires me beyond exhaustion on a frequent basis. Imagine walking around all day with pains in your muscles, yes every single muscle, and then for good measure, maybe add a few weights to your legs. Well that lovely ‘F word’ loves to present me with that little challenge quite often! Lovely!
But, enough of that for now! This blasted condo on could easily take over both my body and my life but we don’t want the ‘F word’ winning do we? Remember I said that life sucks sometimes? Well it does but life is also what you make it so positivity is key!
So this week, since it was National Smile Day recently, I’m concentrating on smiles but let’s come back to that later...
I’ve been thinking lots lately and having opened up to talk about my condition, I’ve had lots of very raw and real conversations. Quite a few stick out in my mind but one or two a little more so than others.
Now if you or anyone close to you has ever suffered, or continues to suffer from any illness or condition you might empathise with this one. People just love to compare, comment and contrast don’t they? Well I’ve heard it all, from having my condition compared to a death sentence to commenting on how bad things could possibly get and giving me complete worse case scenarios.
Well, here’s the thing. My name is Michelle, that’s an ‘M word’ and luckily for me, the ‘F word’ does not define who I am as a person.
Unfortunately living with a condition such as mine however, doesn’t just mean that I have to make significant physical changes to my life but I have to develop an extremely thick skin too!
I’m sure many of you reading this can empathise with me when I say, positivity is key to surviving anything and negative or thoughtless comments seriously get in the way of that. So on that note, let’s get back to those smiles...
They say that smiles are infectious and that if you smile at somebody then more than likely, they will smile back. Well maybe it also bodes true that if you frown, others are more likely to frown with you?
What I’m saying is that negativity can in turn breed negative thoughts and who seriously wants that? So next time you are chatting to someone, it might be to me and you might be discussing my ‘F word’ or it could be your friend going through a battle of their own, please remember we don’t need all those negative comparisons and comments. Let’s turn those frowns upside down and think of the silver linings in those dreary, dark clouds!
My cloud certainly is ‘the F word’ and it’s one gigantic cloud at times. But remember that stick I mentioned last time? Well it’s getting bigger and more powerful with every day I watch my little boy grow and develop. So where possible, I use that metaphorical stick to poke through the silver lining of the ‘F cloud’
So if you are reading this then please remember that F word, (Friedreichs Ataxia) but please also remember that S word and smile!
Until next time...
(I’m off to measure that faithful old stick, something tells me it has got a little bit longer again!)