W is for…

W is for…

This time I am exploring that old chestnut we know as worry. Good old worry, it really can be a party pooper can’t it? Read on and you might just change your mind….

Firstly, can you believe a month has passed since my last column? Time goes past so quickly doesn’t it?! This is my chance however to take time to once again say a huge thank you for all your positive comments, fantastic feedback and incredible support! Honestly, your support alone helps me push that old ‘F word’ to the back of my mind!

Now even though you are helping me put the’F word’ (Frederichs Ataxia) to the back of my mind, you will keep your end of the bargain won’t you? Please just keep doing what you are doing. Like, share, discuss, do whatever you can to help me spread awareness of this horrid, degenerative condition which in essence robs people of their body and eventually, oftheir life.

Just in case you are new to this column, to help you understand the reasoning behind it I am 32 years old but sometimes my body feels much older. In January 2015, after a lot of testing, consultation and trips to numerous hospitals, I was diagnosed with a rare and neurological condition known as Frederichs Ataxia. There is no real treatment to help sufferers get better and there is no cure.

That’s the reality. Yes, it sucks and yes, everyday activities are a huge struggle. I’d be lying to you if I said it wasn’t scary. Everything about this ‘F word’ is terrifying. Does that mean I’m going to let it win? No way! I might have no control over some of the physical elements of this condition and at present there might be no cure but that does not mean that I am ready to throw the towel in!

This column is helping me to spread awareness and with increased awareness, I can hopefully help the mission of some brilliant work going on behind the scenes. I live in hope that some day there might be a cure and in the meantime I’m going to fight it with everything I have!

Now, let’s get to the subject of worry. Worrying. Overthinking. Stressing. All part and parcel of everyday life right? Well I am not so sure on that.

Having read my story to this point, You might think this strange,but I consider myself a very, lucky person. Why? Well because I could be a lot worse off than I am. My symptoms could be a lot worse (For example, I might not be able to swallow or to speak clearly and I could be more profoundly disabled.) Yes, all of this could be lurking, waiting to delightfully greet me in the future but right now I am not one for letting what MIGHT happen worry me.

Truthfully, like lots of people, I always used to worry about the future. Those who know me will testify that naturally I can be a bit of a ‘worrier’. But if something good has come from my diagnosis, it’s this; I have learned (or at least been forced to learn) that you can’t live life worrying about what might never happen. Yes, with my diagnosis, I might have a few more clues than most about the path my life might take but even that is a might.

My point is that none of us really know what will happen, what might happen or even if the worst will happen. I’m proof of that in that upon receiving my diagnosis, I was set for the worst case. In those initial few days and weeks following diagnosis, I was strong on the exterior but inside, it was a different story.

– When would I have to use a wheelchair?
– How would I ever have children?
– Will my husband think differently of me now?
– Will people judge me more now?

These were some of the many thoughts that gurgled around in my moments of overthinking (a process which my husband, Seamus, accuses me of regularly) following my diagnosis.

But you know what? Over a year later and looking back most of these thoughts were unfounded!

-I am still able to move around, all be it in a wobbly way! I try really hard to battle through and stay as active as I can.

-My mobility is further enhanced through the ability to go for independent walks (something I couldn’t do before) because I can now take a pram with me. Yes, a pram which means I now have a little baby! So another worry I shouldn’t have wasted time on! Despite being told of all the difficulties involved, along came Tíernan in May of this year and guess what? I managed to ‘stay on my feet’ and work full time throughout the whole pregnancy, despite being told this probably wouldn’t happen too!

-I think Seamus won’t mind me saying that this was probably the most ridiculous worry I had! As I said before, my name is Michelle not ‘Frederichs’ so that means as a person I have not actually changed since my diagnosis. (Well, that’s not strictly true as I think it’s actually made me stronger; what doesn’t kill you and all that!) But is that really a bad thing? I don’t think so.

-With regards to the last ‘worry’ it’s probably one of the hardest realities of this whole process. Do people judge me now? Sadly, the answer to that is yes. But is it more than before? I don’t know if it is or not.

Unfortunately, we live in a world that is rife with people making judgements on everyone. I think as humans, we all judge at some point and we all exist to be judged. None of us are immune to this. I think what I would say is that I am probably more sensitive to it now.

To give you an example recently, Seamus, myself and Tíernan went to do the weekly shop.

Because of my condition I validly have a ‘blue badge’. Yes, I might not ‘look disabled’ at a first glance, but I am. Believe me, I don’t want to be, but I am.

Now as we got Tíernan out and into his pram, an older couple passed and we clearly heard them moan quite disdainfully, “well that’s clearly not their badge is it?”

For the record, I’ve lost count of the amount of times something similar had happened.

So that is judging. Judging when you don’t know the full story.

That couple were probably approaching their late 70’s or early 80’s. They too had a blue badge but I wonder did they need it in their 30’s? Did they have to struggle to do simple every day tasks when they were younger? Did they have to put every ounce of energy they had into trying to just do the weekly shop? Did they worry that their life might be cut short for a number of horrible reasons?

I could go on. But I hope you get the point. Please make an effort not to judge. You don’t know the full story. All might not be as obvious as it seems.

One of the benefits of having a condition like mine (and I really do think it is a benefit) is that I have become much more aware of others and the importance of not judging others.

So was all that time spent worrying worth it? In a word, NO! Yes, it’s only human to worry some of the time but if you take anything from this let it be this, don’t let worry over what might be, consume your now.

Life is too short. Enjoy the present. Treasure what you have and don’t stress about what you don’t have.

I’m looking to the future with hope because you know what? You just never know…

Until next time, keep smiling, less judging and NO worrying!

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