Hectic week!
Lots and lots of things happened and went on.
Excuse my spelling and grammar, still no Internet on my laptop so using an app on my phone and auto-correct gets on my nerves and changes things without permission and I'll be on a roll to stop and go back. Thank you!
What's new?
I have started beater blocker tablets to slow my heart down! Sounds abit crazy but my little ticker gets to excited and gets carried away with itself. i think it is just trying to take one for the team and over compensate for my lazy lungs which are taking their sweet time to improve!
I am considering myself lucky that they are getting better.. i consider myself a lot like a turtle and as you all know i love them. I guess my lungs just want to take it nice and steady with their recovery too which is cool by me so long as it's a good recovery; but these four walls are getting pretty boring now!
Also another new thing is pretty major and don't think I've mentioned it on here for a while but it has been mentioned alot over the past 6 month and more so over the past few week this admission...
T.R.A.N.S.P.L.A.N.T
okay and breathe!
so it's been a word that has floated along side me in this sea i just bop along in. every so often a doctor has thrown it in to conversation as a little reminder that it's not gonna go away! ha.
I just had too much stuff going on over the past 6-7 month to even consider getting my head into transplant. My heads been in another world for 6 month and it's just come back onto earth more recently. So i have had a few things i kept putting the talk off with. I didn't realise it before but i know now that i have been the one secretly and subconsciously putting this talk off the past few week.
Having a conversation with one of the doctors today he brought it back around and asked when i was going to chat to one if the cf consultants about 'future plans and decisions' he then reiterated himself by saying, "and by that i mean transplant!"
thanks for clearing that up doc ;)
i sat there and my mouth said, at some point this week while my head said, "pardon?!"
and then i had a word with myself in my head and two little turtles had a chat.
One was very avoidant and dismissive and the other realistic and blunt.
It dawned on me that i have a problem.
Panic is sitting in my head and please forgive me if this sounds absolutely crazy. Let me just re-assure EVERYONE (mum & dad)
That i am most definitely wanting a transplant!
I suddenly thought, how am i gonna do this?
Transplant sounds crazy & scary now it's so indefinite.
Not only that but say.. 'hopefully' i do get a transplant and i get to live as close to normal as I'll ever get.. what will i do with myself?
I don't actually know what i want from life.
What job or direction or anything.
I have my basic GCSE's and that's all the qualifications i have,
I just think i'll be lost post transplant. I know who i am right now, i know my limitations, i know my place, role and responsibilities right now. I don't know who or what i will be if i am lucky enough to get that greatest gift of life.
I'm worried this is coming across bad.. believe me it's something i would be eternally great full, appreciative and respectful of but i often wonder what it must feel like going from chains and shackles to being set free.
Obviously the most obvious worry is, the wait. Feel like once i am on that list.. the egg timer turns and it's just a downward spiral till that call comes. I know regardless that the downward spiral comes whether you're on the list or not and I'd rather give myself that chance. it's just like a certain "yes, you really are that bad that this is the best option now"
I had a plan in my head about post transplant.. yes i am a wishful thinker ;)
Anyway.. that plan changed without me having any control about the beginning of October last year and suddenly i don't have a plan anymore. How dare you take my plan!!! grrrr!!!
This quote i found describes the feeling very well:
"Much of the pain we feel in life comes from having a life plan that you've fallen in love with; when it doesn't work out, you become angry that you now have to pursue a new life plan.
If you want to tame your inner demons, you must not come too attached to any particular life plan, and remain open to the idea of an even better, happier life plan"
So maybe me not knowing what i want or where i go or what i'll be is the best thing?
Lets hope the best is yet to come eh?
Day 10: favourite drink!
I am partial to a hot ribena however of course those of you who know me atall will know my favourite drink is irn bru!
Gotta love that fizzy orange goodness.. Yum <3
Sweet dreams my bedbugs <3
Sophie xoxo
Hey Sophie, I can totally understand where you are coming from. Your illness is part of your identity, if you have a transplant you will be released in the big bad world with little experience and will be behind everyone else in terms of career etc. Its scary but also exciting! You are an intelligent girl and I think you will learn and develop so quickly to form a new, better identity and have a fantastic life after transplant xx
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