Where to start, i dont know?....
Less than 3 weeks off of IV'S and im feeling poorly.....again same s*** different day.
I feel the time to talk about transplant with my team is near. The more i speak to my CF Friends the more im convinced i am that the time to discuss my options seriously with the team is upon me.
I used to have IV'S twice maximum 3 times a year and i would feel amazing once the course was finished, but now i am having more and more admissions and the amount of time out of hospital between courses is getting shorter and shorter.
There are so many things i can no longer do, just to be able to stand for long enough to cook a meal or do the ironing or not need 3-4 hour naps if i go out for an hour or 2. My life is very limited at the moment and i have never been more aware of cf. It used to be such a small part of me now it dictates every single thing i can or cant do.
I am supposed to be going to the theatre to see war horse on the 26th and i am trying to prepare my body for such a long day, the traveling and the mere task of sitting upright for hours is something i need to train for...its crazy :/
I dont feel i can plan a future, not in any way at all. I do not know how i will be overnight or in the morning let alone next week or in a few months so booking anything in advance is now a possibility.
And if i do have an event coming up i need to make sure im fully rested before doing it. Everything is a compromise.
If i want to go shopping i need a lay in.
If the housework needs doing and i want to go and see a friend i have to choose which one i want to do.
I need to priorities, plan, think ahead and judge how long i will be out of the house and how long i will need to be awake.
Believe it or not i can only manage 4-5 hours at a time before my body craves rest.I know i shouldn't but i do truly envy girls of my age whose biggest question in their head tonight is what outfit they will be wearing to the pub tomorrow, or what pub they will be going to to get pissed, or how they will cope when they are so 'ill' the next morning with their hangovers. I remember when my 'ill' was a hangover...oh those were the days, oh to be 'normal'
I know i shouldn't envy or be angry but i am and i cant help it. Im angry at life, im angry at the questions i have to ask compared to others.
But then i hate myself for being oh poor me when there are people out there who have been dealt such harder cards than i have. I should shut up and just play my cards and accept them but i sometimes just cant help this anger especially when i see people running around planning their lives with there partners, booking holidays, trips, days out, motherhood, anniversaries when im not even sure i can do any of that again.
I should be happy for those who can and be grateful my loved ones will never a day in their life feel how ill i feel daily.
BITCH...I'm sure that will be some reactions i get to this post, ill accept that as i am a bitch who is jealous, an angry little person sat in her bed frowning at the world.
The green eyed monster is a terrible thing!
Will a transplant make me smile? The affects daily medication is doing certainly does not cut it. Will Transplant give me the certainty in life most people have or will it all go horribly wrong?
Life is such a precious thing, most people will never realise that and its such a shame as they do not realise just how amazing it is to make plans for the years, months, weeks or even days ahead.
Death will be a part of us all, that much is a given but when your fate is constantly thrust in your face it can be very daunting.
Many people who have had near death experiences will say they never knew how amazing life was and they will now embrace it with both hands.
I want to grasp life and embrace it too but unfortunately its not always that easy, dont get me wrong i DO try and live the best i can everyday but i wish there wasn't so many compromises and so much uncertainty....
I dont know what else i really can do to feel better each day....
CF is evil. It takes young lives everyday from people who fought everyday of their lives to breathe. Through no fought of their own they are faced with a daily concoction of medication just to live another year or to stop the decline in lung function.
No one can understand my anger, no one can understand my frustration, my fear, my panic and my plea with my own insides to make me feel OK, just OK...... just for a while
Is that to much to ask? am i justified in my anger? Should i even be angry? Should i just 'keep calm and carry on?......
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