What a week it’s been. Wristbands, fundraising , appointments and U.S. visas… My brain is exhausted.
Today marks exactly two years of being dizzy. The day before this I was applying for jobs as a Paediatric nurse and was busy finishing off my final placement. So who would have thought that now two years on, I would still be lying in bed, my whole life taken over by this condition. And not only that, but planning a trip to the USA to have surgery…. Not quite your average ‘holiday’ across the pond is it?
On Thursday I was given confirmed dates. I was so happy and relieved to finally know it was happening, THIS JULY!. It didn’t take me long to become completely over whelmed and scared by it all though. I was with my GP at the time and didn’t really appreciate having a breakdown in front of her. The reality of the situation often gets to the point of being completely over whelming. Luckily my wonderful GP gave me a big hug, reminded me to breath and talked about her pet pig (made me smile anyway). I left feeling completely frazzled by it all. So frazzled I nearly squashed my poor dad as I fell on to him trying to walk in a straight line back to the car (this is a pretty standard thing for me to do as my balance has got so bad). It took me a while to get my head round everything and the fact that this is actually happening. Sometimes the right path is not the easiest one….
I then remind myself of all the family, friends and total strangers who have already put themselves forward to help me. You wonderful people are making this opportunity possible! I might be in this nightmare situation but I am being given the best hope of a cure, and I couldn’t be much luckier. This has been nothing but a never ending roller coaster but I feel like I’m finally reaching the end of it. I’ve been on a journey which has not only made me more grateful for the love and support of my family and friends, but it has made me more and more strong as a person. I know I can do this.
Yes I get angry with the situation I am in, but I have learnt that it’s just the way it is and some way or another it will work out for the best . (Everything happens for a reason, so my lovely Nan says !?… We’ll see..) I just can’t quite imagine having my non dizzy self back. As you can imagine I have a pretty long list of things to do and dreams to follow. Its so exciting just thinking about the fact that this WILL be possible one day. For now i’m managing to stay focused and distracted. Meditation and burning oils have become my new best relaxation friend (yes, it really does help!!) Picture a nice Spa and all those relaxation noises they play, that’s what my room now sounds like on a regular basis. It also helps block out some of the torture noises that make my head spin and eyes bounce around all over the place (like the dude who just held his car horn down for what felt like a lifetime right outside my bedroom, CHEERS!) This kind of sound is just an absolute disaster for me. Ear plugs are a new essential item..
In a few days we will be launching our YouCaring page and also releasing a campaign video to give you an insight into my life with SSCD. If you would like to help please feel free to donate! You can also buy one of our wristbands here:
Here’s to being able to celebrate with you all one day!