On a rollercoaster & I want to get off!!!

The last few day’s have been a complete rollercoaster ride.
I feel like a yo-yo, feeling up one minute, smiling and living life the best way I know how, then out of the blue, bam, completely depressed the next, balling my eyes out or punching a pillow.

As you will know I had the decision from Harefield on Thursday with regards to being put on the transplant list. I said at the time I wasn’t shocked or disappointed, but I can tell you now that was a little far from the truth. Because I kept thinking about the positive side, enjoying Christmas without the stress of waiting for a call, it overwhelmed the fact that I’ve not yet been listed and still have to try out another treatment before this is certain.

The fact that I’ve been struggling quite badly the last few day’s hasn’t helped. My chest is really crap, I sound so squeaky, you could hear me from a mile off and my breathing is so shallow, it’s extremely hard to take a deep breath in. I’ve been coughing so hard again that I am sick, worst thing ever when you have just eaten your dinner, and bloody embarrassing if your in public. I just feel rotten and still haven’t seen my CF team in Exeter.

I have, however, heard from physiotherapist. She and a female fitness instructor are coming to my house on Thursday to start an exercise programme with me so I can build up strength back into my muscles and keep as fit as possible if a transplant takes place. I can’t say I’m entirely enthralled by this meeting, I mean, I can’t even walk a few sodding stairs, so hope their not expecting me to start star jumping and sit ups in my living room!!

I’ve had two lovely evenings with my husband which has been really good, he worked 8 nights straight since our return from Middlesex and we hadn’t had the opportunity to talk about things that were on our minds.
We went to the cinema on Friday morning to see Breaking Dawn (Yes, again for me!!) and then chilled out at home, I tried to nap as was feeling particularly unwell. But it was lovely to have him home, cuddle up and laugh about things. We had lots of playtime with our babies who wanted to pose for a few Christmas pics!!

* The babies prepared for Christmas *

On Thursday evening a few things happened which woke me up…
Writing my blog, has given me the chance to pour my heart out, an excellent stress reliever rather than bottling things up and harming myself in other ways. All I really wanted from writing was to make people more aware about Cystic Fibrosis, how it can affect your life and the importance of organ donation and being listed as a donor.
I have been overwhelmed with the support and amount of people reading it, I couldn’t be happier and I am so grateful, so thank you to all of you…

A sad realisation I also discovered was just how much I try with some people and I might as well be trying to befriend a pencil.
I have tried really hard with some people for many years, and also some more recently, but on Thursday, it felt like I had been slapped in the face and I knew then that I really should just give up.

I’m a very sensitive person, I worry to much, I care about people and hate to see them hurt, I will also keep trying, no matter how much they hurt me. Stefan knows this only too well and it drive’s him mad. But life’s too short, it’s taken me a while, but if people can’t give you their time, then why should I give them the very precious amount of time I have left…

For all its faults, facebook has a great way of bringing people together. Without ever meeting them face to face you build such a lovely friendship with some people and I really must say they’ve given me a hell of a lot more support than some people who have been in my life in previous years.
Angie Bruns, Sarah Pym, Joanna Moore & Kerry Thorpe to name but a few. I am truly grateful for having had the chance to befriend people like this in the last few months. Another thing to be positive about!!

The next few days I hope will be better, I need to keep my head up and try and enjoy life like I usually do.
I have an exciting diabetes retinal appointment on Monday morning & my fitness meeting planned, and will try and get to see my consultant to talk about Harefield and start the new medication.

Before I go, I want to say that I’m thinking about my fellow Cfer friend Kerry, who is going through a particularly devastating time at the moment, I hope what I’ve sent brings a smile to that beautiful face again.

I also want to ask you if you could all tune into BBC3 on Monday 28^th November at 9pm for ‘Love On The Transplant List'. A documentary about my friend Kirstie Tancock who had her transplant in July this year after a horrendous fight for her life. (Be warned; I’d keep a box of tissues on your lap) xxx