FD Free Day – take two

Since April I have been writing a column for the Big Issue and I am still loving it. People have recognised me and yelled out my name. I have even received a couple of letters from some readers. There is one downfall though and that’s that I need to write something every fortnight. I find it hard coming up with new ideas, especially when I’m working more and using my weekends to rest. So, I have a trick up my sleeve. I sometimes use old blog entries! I scroll through my old posts and choose one that is relevant today and tweak it a bit.

In the most recent edition I re-used a post I wrote a couple of years ago about what I would do if I was FD free for a day. I re-used this one because I’ve been a bit frustrated lately with my FD and I was looking for something to bring me out of my funk. In this post you will see that at the end of the day, I’m pretty happy with my life and I can survive with FD. I am strong enough to keep on going, just sometimes I need to remind myself.

And now, below is that post, tweaked for the Big Issue. Enjoy!

What would I do if I didn’t have Familial Dysautonomia for a day? To be perfectly honest, one possible answer to this question would be pretty darn boring and the other one would be X-rated.

I am extremely conscious of my condition, so to go for a day without having to think about it would be so nice. To be able to walk down the street and not have to count my steps or make a conscious effort to lift my leg would be amazing. I would be able to skip into a shop and try on a mini skirt without having to manoeuvre my walking frame ‘Scarlet’ around the racks. I would try on some red high heels with a skirt and twirl around in front of the mirror and laugh.

I would buy that skirt and pair of heels and wear them to a bar that night and walk down the stairs without having to cling to the rail or my friend. I would buy a cocktail (or get some guy to buy it for me) and make my way to the dance floor without having to hold someone’s hand and just dance by myself and laugh again. Or maybe that guy who bought me a drink would twirl me onto the dance floor.

But I’ve jumped way ahead. I haven’t even mentioned how I would start my day. Simply put, it would involve a run in the morning, or swimming, depending on the weather, followed by a day filled with wandering the streets while wearing clothes that would emphasize my lovely physique.

I told you it would be boring, but that’s ok. Sometimes boring is good and easy and not intense in any way. I think when a person has a chronic illness, disability, or even an illness, every little movement takes a lot of time, effort and thought. This can be exhausting and by the end of the day – or 6pm, you’re ready for bed.

So, of course, if I had an FD free day it would be pretty amazing. But the question also got me thinking about how FD is a part of who I am and without it, I wouldn’t be doing what I am doing or exploring the things I want to do in the future.

I tend to under estimate myself and forget what I have achieved. Because I developed a disability I decided to look for a social work university placement and I then explored different paths, such as my blog, public speaking and so forth.

And the thing that hits me is that I’m good at what I do. I’m not great, but I have the potential to be great. I am happy with who I am and without my FD I might not have turned out this way. So I guess I don’t need to imagine what an FD free day would be like and just “keep on keepin’ on”.


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