This blog has followed my life with cystic fibrosis, having had two double lung transplants, being placed on ecmo a form of life support, learning to walk and talk and facing chronic rejection twice. Along side this I'm a fitness pole dancing instructor, aerial hoop and silks instructor and personal trainer.
Saturday, 27 July 2013
Sleepy girl
Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.
I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.
I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.
I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.
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No real words Kirstie just prays, hope and empathy, God Bless, have a rest, why not? You give me strength to carry on, help yourself dear, love K.
ReplyDeleteSleep if you want to sleep Kirstie (we fight more in our sleep anyway) I'm sure your family don't see you as draining, I imagine they see you as strong, brave, smart and the other lovely qualities that make you who you are. I can't imagine how hard things must be for you right now, just remember you fought and beat Cf once and if anyone can do it twice it's you. Sending you all the love and strength in the world. <3
ReplyDeleteHi Kirstie,ive been following your blog for the last 4 years and you never cease to amaze me with your courage and positivity. I think about you most days and check your blog regularly and hope so much the hospital can get on top of things for you. Sending you love and strength.x Sue Marley (mum to a CF angel)
ReplyDeletesending you all the prayers and love I have. You are a beautiful, strong, inspirational young woman. I hope you can take comfort in all the love that surrounds you. ♥
ReplyDeleteAs I sit here in Australia, watching your wedding doco for a second time, I've just goggled you to get an update of where you and stu are at. I'm deeply upset that your fight for life goes on. But I'm not surprised to read that you're still smiling and staying positive. Keep that wonderful twinkle in your eyes. A person with such a shining spirit like yours needs to stick around!
ReplyDeleteI live in Australia and watched your doco for the first time last night. To say i was moved by your beautiful and positive spirit would be a massive understatement. You are a gorgeous person with so much strength and beauty to offer to offer the world. Why people have to face challenges like you do noone knows; but its not about having the challenges it's about learning to overcome them and you are nailing that shit. Keep smiling lovely; life intends for you to stick around; you are an inspiration xx
ReplyDeleteDear Kirstie, I've been reading your blog for 3 years. I popped back to see how you were doing and was so sad to read the latest updates. What an amazing person you are, I cannot believe your bravery and dignity in the face of these latest developments. Hoping so much the radiotherapy helps you. You and your family are in my thoughts. You are inspiring me to make each day count xx
ReplyDeleteStay strong! You are inspirational to me and other CF's!!!
ReplyDeleteLife sometimes is not fair, but God is, always heard that the miracle is within us, you will find yours.
ReplyDeleteDaniela Fraga.
what is meant to be will be Kirstie, prayers with you and everyone supporting you at this sad time xx
ReplyDeleteI know in part a little how u feel about being at home. I am on oxygen 24 hours only recently and am back at home. Things are more difficult too. I also end up sleeping more and i agree sometimes u can forget. I hope you find the strength to carry on fighting and get that second chance.
ReplyDelete