Well Saturday was a complete shambles, from the moment I got myself out of bed I knew It wasn't going to be a fun night, By the time i got to Stu's mums and dads, where we were staying for the night, as its closer to where we were going out, I had a raging temperature, felt sick and very breathless. I still got my self ready and dragged myself out in a shivery mess. I sat there looking at all the people having fun, thinking god they must thing I'm so boring. When ever Stu's friends see me I'm always ill and have a temperature, i swear its just the way it goes. So i never have the strength to crack a joke. Instead i sit there shivering and feeling like I'm going to pass out. In the end i decided enough was enough and asked Stu to get his mum to pick me up, he could stay i didn't want to ruin his night but if i stayed any longer I had a feeling i was going to ruin it for everyone else and collapse in front of everyone. I could not face that. So Stu's mum picked me up, stu had to help me to the car i felt like such a state and i went back and climbed in to my pj's feeling really really ill and actually a little scared. I hate feeling alone when i feel so ill, I know i wasn't but i wanted Stu or my mum you know the only people who really know you and can comfort you and make you feel safe.
Stu didn't stay long he was back by 11 with a curry, which by this time i felt a little bit better and managed to eat some, then we went to bed and everything felt a lot better.
At the moment I'm getting temperatures every day, sometimes they last all night, sometimes only half an hour. Once they pass i always feel a lot better. I'm Still very breathless and I'm coughing up loads. I wonder if i should have gone on IVs but then when being ill is all you know its sometimes harder to know if your iller then usual.
I'm packing for London today, I hate packing, its always so hard, makes me really out of breath. I'm always having to go up and down the stairs because i forgot something or rather. I hate stairs, i wish they never existed.
Anyway I'm off now, my next blog will probably be after my app, letting you all know how it got on, it Wednesday this week, so not long now. Wish me luck?
Thinking of you hon - best of luck! You know where I am if you have any questions. Emily xx
ReplyDeleteHi Kirstie
ReplyDeleteI just wanted to say good luck for your appointment on Wednesday and hope that you get the result that you need.
I'm not being funny love, but can you start being a bit more positive? All you go on about is Cystic Fibrosis but in a a negative way. Stop moaning too love!
ReplyDeleteI take it the last poster didnt mean to sound harsh even though it came across that way a little. There is NOTHING positive about CF, all you have is friends, family and hope. A healthy person has up days and down days too, but having CF must be a 100 times harder to stay in a positive mood. Every sufferer is a true soldier in my eyes with super human willpower - bit of a lame super hero but you get my drift. I hope things start picking up for you Kirsty, keep on keeping on :-) . Oli x
ReplyDeleteHonest to god 08:44, I wish you could live for just a day with Kirstie's quality of life, because even that would be enough to show you what an ignorant insensitive, not to mention totally false, comment that was. Thing is then you'd be able to wake up the next day thinking it was all just a bad dream and carry on as normal. Kirstie can't. I've heard people moan more about a broken toe than she ever does, you insensitive prick.
ReplyDeleteApologies that was a bit harsh, but you really should realise the impact an ignorant comment like that can have. Please try to be more understanding in the future.
ReplyDeletethinking of you kirstie :)
ReplyDeleteKirstie, ignore the 0844 comment. If they don't like it your posts they don't have to read them. It's your blog and you are telling it like it is. It is not going to be a walk in the park and there will be a rough times ahead but I am sure your story will have a happy ending. You are doing your best and that's all you can do.
ReplyDelete(Elly don't apologise for your comment about 0844, I agree 100%.)
Dave
Just to say Kirstie, ignore the anon post that's trying to provoke a reaction - it's just a troll.... in fact that's a sign you've made it in the blogging world, all the best blogs have trolls attack them ;)
ReplyDeleteBig hug, Emily xx
Hello, Kristie, I've read your most recent blog...your mother posted it & as I write this you are in the hospital. Don't listen to what other people say...if you wish to vent your frustrations, DO IT! Thats what blogging is for! I am on the waiting list for a liver transplant and was told the same thing by someone, but, people deal with everything differently when told they have an extremely serious condition. I know someone who has had full-blown AIDS for about 5+yrs now, and she has completely lost the will to live. I have tried to help her, but to no avail. I've made appt's for her, visited her in the hospital, helped her get transportation to her Dr's appts, but she just doesn't care. I didn't do these things because I was expecting praise&admiration, I did it because no one else would. And then I discovered why. People would ask about her, but as time went by, she just let herself go, and, sadly, she's ready, I don't see her making it to the end of the yr. I was her only friend, but I had to(for my own sanity)distance myself from her because she wouldn't go to the Dr., about 3 yrs ago, she was told she had Cervical Cancer and she would need a hysterectomy. She's 40, had 3 grown kids already, so she didn't need to have that anymore if it was just going to cause her to get more ill. She never got it done, never even got Chemo and her reason was "I'm scared." WE'RE ALL SCARED! But is that a reason to let yourself so like that? No...what me & u have in common is we're fighters. I can see it in the way you speak and even though we are on different sides of the world, that brings us together. Countless, heartless Dr's have told me "your chances of surviving this are not in your favor", but I don't want to hear it. I shut it out because if God wants me to live, I'll live. If God thinks it's my time to go, then I'll go, but I'll go knowing that I fought tooth & nail to prolong my life. And this is coming from a gal who was raised strict Catholic and considered myself an Atheist for the last 18yrs! When going through something like this, you NEED something to believe in. My father died when I was 12, very traumatic to me, I destroyed myself from grief, he wasn't only my father, he was my best friend and I watched him die from AIDS (and all of the horrible diseases that come from a non-existent immune system) for 4 yrs he was in & out of the hosp. I couldn't live with that loss, so I turned to substance abuse. Although my Cirrhosis is Cryptogenic (unknown), I'm pretty sure that it's due to my chronic substance abuse. I have been sober for almost one yr now. I'm no saint, never claimed I was, but I am worthy of life & I don't believe I deserve to die at 30yrs old. My father was 43 when he passed in 1994. I do the AIDS Walk-a-thon every yr in his memory.
ReplyDeleteWell, I can go on & on, but I won't! ;-) Just know people are praying for you and you're a fighter & you will win this fight!