Wow! Another month has passed already, it’s unbelievable how quickly time flies isn’t it?
Well for me the past month has been a busy one- I’ll fill you in on it all, in a little bit.
First, I need to say a huge THANK YOU to everyone who read, liked and shared my last blog. As always, I appreciate your support. Honestly, your lovely messages keep me going on the bad days- on those days when the ‘silver lining’ is hard to find!
A special thank you this time to everyone that messaged me with advice on my ‘w’ situation. (For anyone who can’t remember, my last blog explored the likelihood of me perhaps using a walking stick.) I’m not lying when I say that I was overwhelmed with your responses! So many people contacted me from near and far offering their own experiences and passing on messages of support. I even had a few people send me details of research they had conducted on my behalf! To say I was ‘gobsmacked’ is an understatement! I think Seamus got sick of hearing me say, “wow, look, I’ve got another message!” Thank you to each and every one of you. If I haven’t got back to you personally yet, I will, I’ve just been mega busy as you’ll see later on!
So yes, it’s been a hectic one since I last updated you all but I wouldn’t have it any other way!
Tíernan and I travelled home for a long weekend around St Patricks Day and for the first time ever, I used the ‘Special Assistance’ (SA) facility at Stansted and Belfast International Airports. My aunt came too, but I wanted to use the service to see if it could help me travel alone in the future. I have one word for the SA service- amazing! From start to finish, it helped me travel minus that extra large baggage of worry. I didn’t have to worry about stairs or tripping or holding anyone up or about how I’d carry Tíernan on board or indeed his bag. The SA team did it all! Of course I did have to deal with ‘the looks’. Looks from folk who clearly wanted to ask, “why is she skipping the queue?” Or looks from the doubting crowd (there’s always a few) who thought, “there’s nothing wrong with her.” But you know what? For the first time ever, I didn’t heed those looks because I didn’t care! SA made me feel that travelling alone might just be possible again, even for me with all my wobbles!
If only SA could also eradicate the effect even that short haul flight has on my body though. Seriously, the day or so after arriving home, I felt like I had jet lag! A bit dramatic you might think? Well not really because one of the ‘lovely’ symptoms of my condition (Frederichs Ataxia) is fatigue. It’s so hard to describe and on the outside, I might appear well. But on the inside, every bone, every muscle and every twitchy nerve aches almost like they are all screaming, “please sleep for a week!”
Of course given that I was only home for a short while, I had to grin and bear it, but if I didn’t get around to seeing you- maybe that explains why? It’s hard to explain to people that when you are battling this, that even the most simple of tasks demand the ultimate amount of strength and energy, but that’s Frederichs for you- As unforgiving as ever!
So our Fermanagh trip grew to a close but no sooner had we touched down in Stansted until us ‘jet setters’ (Tíernan and I) were off again! This time we were headed for sunnier climates! The Beagan’s had our first holiday as a family to attend to so it was off to Lanzarote we went (with Seamus of course!)
We had a fantastic time away. It’s just so good to get away from everything. To relax, unwind and recharge! We haven’t been away on a ‘sun’ holiday in a while and I’d forgotten how good it felt! They say everything feels better when it’s sunny don’t they? Well that certainly rung through for me as it was a wonderful medicine. ‘The F Word’ (Frederichs) must have wondered what was happening because in the sun, it couldn’t bother me as much with those pains it likes to present me with and my energy levels soared! I did wonder if I lived in a ‘sunnier’ destination, would ‘The F Word’ have more difficulty in bothering me?!
Of course all that ‘time out’ allowed for lots of extra ‘thinking time’ and that led me to realise that since our last ‘sun holiday’, our honeymoon, lots has changed. Not just the usual stuff- but more so to do with me, my mobility and my ability to do things.
Now I usually try to put a brave face on when it comes to ‘The F Word’. I am quite positive and I also realise how lucky I am in many ways. But certain experiences on holiday made me realise just how much ‘The F Word’ has robbed me of!
Getting up and down of a sun bed was one of those challenges. It took lots of thought and planning on my behalf- just something you’d normally do without thinking.
Getting into the pool was kind of a ‘no-no’. All those steps and no handrail and all those eyes peeking out from shaded glasses watching, almost awaiting my clamber to the floor- no thank you!
Buffet mealtimes were fun. Have you ever thought how someone with major balance issues might balance themselves and a tray of food at the same time? Well can I tell you- they can’t!
A visit to the local town was an eye opener too. The taxi companies didn’t allow children without car seats (understandably) but the walk was a good 20 minute one. Lovely you might say given the sun and scenery. Yes, lovely indeed if your body didn’t actually make you pay for days afterwards if you were to do a walk that distance. So instead me and my wobbly legs took the taxi alone and Seamus and Tíernan walked ‘into the sunset’.
I could continue, but hopefully you get the picture?
Now before you get the wrong idea, NONE of this spoiled our holiday. I simply would not let it. If I did then ‘The F Word’ was winning and I’m not having that! No, we had the most wonderful time, a brilliant family holiday complete with memories made forever. But all those little stumbling blocks were food for thought and in many ways were a little ‘wake up call’.
‘The F Word’ might not be winning a mental battle over me but physically speaking, that little blighter is pushing me to my limit. So this month, my letter is ‘D’. D for deterioration. There is no escaping the truth, sadly (and scarily too) ‘The F word’ is causing my mobility to deteriorate- all be it slowly. I’m just hoping that it doesn’t gain too much momentum in its mission to rid me of any mobility any time soon!
As always though, I live in hope and I try hard to concentrate more on another ‘D’ for determination instead!
I’m back to work now but I’m still going to try to keep the column going, so I’ve no doubt that I’ll fill you all in on how that is going soon!
Until next time folks remember the message- put that brave face on and dig up your determination to kick your own ‘F word’ into place!
Oh and keep smiling!
Bye for now!