Tomorrow (Wednesday the 27th) will officially be 1 month on the list. Most people said it starts to feel real and normal by then, it still hasn't to me! I am still petrified but just lately I've had a few 'scary moments' where I didn't think I'd make it through the night, it's made me realise just how unwell I really am. It's extremely scary and I know I really do need to appreciate every single day. I now know just how desperately I need new lungs, so I'm hoping the call does come soon!
I have started writing a blog for the Ipswich Star Newspaper, about me, my health and obviously raising as much awareness as possible about CF and organ donation.
My first post - 'Welcome To My Life' was in todays paper and it has resulted in a lot of views on the blog website!
Feel free to have a read of it Ipswich Star Blog :)
I don't have much else to report on really, I'm struggling quite a lot, I've barely left my sofa for the past week or so, but I am going to clinic tomorrow. I'm still on 3 IV's but maybe I will see if there is anything that can be changed to hopefully allow me to pick up a bit, I'm also going to ask about a 'NIV' which is a non-invasive ventilator, it's a machine that basically breathes for you via a mask. I really need a break from breathing, it's completely exhausting and it is becoming more and more difficult, so I hope they allow me to try the NIV, I need something because this can't carry on!
In much better news, while everything else seems to be going down, my weight is going up!! Everyone keeps commenting that I look so much healthier and chubbier in the face, I tried on my favourite pair of shorts the other day (I wore them pretty much all last summer) and I couldn't get the button to do up at all, the zip wouldn't even go up, it's fantastic but has meant that I've needed to spend lots of money buying a new wardrobe as I've gone up a dress size. I'm almost at a perfect BMI which makes me feel so happy and proud, I never thought I could get to where I am today, being this unwell gaining weight is almost unheard of, but I am so pleased I'm there and still gaining! Soon I will be an actual fat whale ;)!
Thank you for reading.