Tuesday, November 28, 2006

I think I am finally loosing it (stop sniggering at the back there). No in all seriousness, I am sitting here perfectly calm and composed on the outside, but that is merely because I know my lungs won’t tolerate the amount of screaming, crying and howling that the fear and frustration inside wants to create. Merely blogging about this brings forth a whole new torrent of emotions as I know people in this same situation will read this and they must be feeling like I am but I have to write or I will go mad.

Three people I know have had false alarms in the last week. Three people. All at Harefield. None of them me. There, that sums up the entirety of this entry really, me me me me me.

That is part of the twisted nature of this whole waiting game; the people who support you, who you rely on and talk to and who need you right back are also waiting. So whenever you hear of a friend being called, there is a surge of elation for them, followed by a drop of sheer despair. Completely illogical really, as just because one person gets a call does not mean another wont, but somehow in my head alarm bells start ringing that I will slot into the 50% whose chance never comes. Then follows the obligatory guilt for having the sheer audacity to even contemplate “why not me” – why should it be me more than any other person? The answer is it shouldn’t, and I know that, but we all have an in-built survival instinct and are all craving for this second chance.

Worse than all of that is the fact that in all three cases the lungs were not viable, so I cant even celebrate that a friends new lease of life is beginning; all of these people are still waiting, still needing and still hoping. I know how crushed I felt in the summer when my call turned out to be a false alarm, so I don’t know why I am envious, it is a cruel position to be in, to have the possibility wafted under your nose and then to have it snatched away. Not to mention contemplating the three people who died and donated those organs in the first place, my head is spinning and is a whirlpool of thoughts and emotions, although sadly at present the woe is me element is winning.

When I am feeling frustrated and helpless like this I like to get up and do something which at least makes me feel like I have some sort of control over which way my destiny is headed, but at this second I have no new ideas feel like I am running out of steam. Sometimes things are out of your control and you have to ride the wave, I try really hard to do that, but cant help wanting to steer it in the direction I want to go. I am just having one of those evenings where I can physically hear the clock ticking away, echoing in my head. And I am feeling the least confident I have ever felt that I will ever get this transplant.

Disclaimer: moody rant written in place of self-indulgent tears mentioned in first paragraph, or storm-out/manic hoovering mentioned in previous blog, as lungs much prefer me bashing the keyboard about a bit.


Anonymous said...

I won't pretend to understand exactly how you're feeling, but I can imagine. I'm sorry you haven't been called yet, and it's so frustrating that sometimes the organs of people who wanted to donate just aren't quite healthy enough. But that's one of the things that makes all your hard work and campaigning for more organ donors all the more worthwhile, and so you have to stay strong and keep fighting, something which we all know you are more the capable of doing :)

You will receive the call one day soon, so just hang on in there. Sending you uber-big hugs and lots of love, Kat xxx

Anonymous said...

As Kat said, I too can't know exactly how you feel. But do empathise with the frustration of it all. Not least because you express it so well. Hopefully sharing some of that frustration around may lessen it for you. I hope so. Keep strong. We've got fingers, toes and eyes crossed for you in our house. xx

Anonymous said...

keep going Em - the weather should be clearing up this w/e - sit yourself in the winter sun & get your spirits up again!

thoughts & prayers with you and yours as always..

Lots of love
Pip x

Unknown said...

Hi Emily,
Please don't feel said I know life can be a bitch sometimes. But you are doing a great job keep thinking positive thoughts and I am sure your transplant is not to far away.

Anonymous said...

That's so sad/bizarre that you've experienced and witnessed these false alarms. I guess there's so much more I need to learn about CF. It seems unfathomable that you and other such patients can be put through this, but I guess there has to be some reason. I just hope (besides you getting your lungs) that someone finds a way to make it so that you aren't informed until/unless it is absolutely a sure go.

You've somehow gotten emotionally derailed. We all do. Here in my part of America, it's about 2hrs16min until it's 12:01 am and I can say it's a new day and a clean slate. If I have a bad day, I try hard to stay up until this magical moment, where a clean slate is given me. Feel the pain, but then try to step back and look at it from outside yourself. Take some alternate route and open yourself to the happiness that has made you what you are to us. Only you can learn how, though.

It's been a pleasure to meet you over this blog. Not sure what can salvage this particular day for you, but have yourself a great day tomorrow in the best way you know how.

You'll get that groove back.

Anonymous said...

I know it can't be easy, as you described. Let yourself have your down days, they'll make your up days seem higher! I'll do some screaming and crying for you later!!

Em. You WILL get your new lungs and you will get them soon. There's no way you'll have us doing the Hydro next year, I'm expecting a call to do Ben Nevis!!

Love and hugs.

Anonymous said...

I wish I could think of something inspiring to write in the way that you do. I wish there was something I could say to take away the pain and despair. All I can say is that three more families made the decision to donate. I know the lungs weren't viable but other organs may have been. But what is important is three more decisions to donate - who knows they may well have made that decision because of you. In amongst the darkness we all feel some days remember all the good you have done - the people who have joined the register because of you, the people who are inspired by your blog every day, the awareness you have raised. Take strength from that. Your time WILL come.
Much love and many hugs
Pauline and all at DFN

Anonymous said...

hi Emily
Thanks for this post-- it spoke right to my deepest feelings about being on the waiting list. I understand completely those emotions hearing about others who got called up for transplant. Everytime I read about fellow kidney people getting them I feel both elation and despair. Happy they got a chance but then sad and angry and mad - all I want to do is stomp my feet and shout that its not fair its not me. I get especially mad when I hear of people getting them after 1 month, 2 months, when I've been waiting longer. But then I also feel that surge of guilt that I shouldnt be so selfish, after all there are people waiting for kidneys 8,15, 20 years and never getting them. And then there are people like yourself who don't have the option of dialysis. Not that dialysis is fun, its totally pants.

Anyway, at times like those I always try and remember: one more kidney transplant, even if its not mine, is one more person off the waiting list and one step closer to my own transplant.


Anonymous said...

Hi Emily, I have sat here trying to post a reply and think of what Mary would have said to you, and i cant seem to put it in words, all i can say is try to remember all the mails you and Mary shared , and in Marys own words.. every day you are on the list , is a day closer to your transplant ..and she is right there with you now side by side still holding your hand , sending you huge hugs and all our love Alan and your angel above xxxxxx

Fi said...

Ah Em, once again I feel for you, unbelievably so. I wish I could help, we all do, but I guess all we can do is be here for you. I believe it will happen for you, but I also wish it already had.

much love to you

suzie said...

Hiya Em,

I've had several go's at a reply and they all sounded naff when I read them back. So just want to say, I'd love to give you a great big hug just now but as I cant I'm sending massive cyber one's.

Keep tapping the keys hun, we're all here to tap back....always.

Love 'n' many (((HUGS)))
Sue & Chris xxx

Simba said...

Hello Sweetiebobble princess,
I hope you had a good sleep and are feeling better this morning.
You are sooooo entitled to feel rubbish so blog away to your hearts content if it makes you feel better. But whatever you do, please don't do a me and feel bad about feeling bad!
I just wanted to say that you've helped me so much and if I can just give you back 1/100th of what you've given me, then I'll be happy 'cos you are so totally fab.

Are you still seeing Liz? Maybe you could give her a call?

Sending muchly hugs and love, Ms Simba xx

Nicola said...

Sweetie,I can't understand exactly how you feel as I'm not quite there yet.I pray everyday that you get your call,and I want you to know that I am always here if you need a hug or a shoulder to cry on , even if it is online :)

Lots of pink,sparkly,sugarcoated sweetiebobble hugs.xxx

Anonymous said...

hey sweatheart. wow reading ur blog is strange all those feelings come flooding back. except i no uve been waiting alot longer than i did. i dont no how u think but the way i always thought was well its not my time yet and the reason im having to wait is cos when i get my chance its gonna b the best match and im gonna do everything ive ever wanted. i guess i was just telling myself that to kid myself at the time. i was lucky and all that came true. u have given no much to the cf community and i no if u keep up ur fight for life and all ur dreams will come true and u will get this much needed lungs.
am remember u can talk to me if u ever need to i will do what i can to help u

Anonymous said...

Fingers crossed that it will come really soon Em!

Lots of love and hugs

MoO xx

Anonymous said...

Absolutely nothing of any intelligence to say apart from that many people are thinking of you (you seem to have an amazing group of friends) and I hope you are feeling better by the time you read all their lovely comments, and those from us in the wider world.

liz x

Anonymous said...

Emily I totally agree with someonw further up the page that these 3 donors may not have come forward if it wasn't for your campaign. I can't know exactly how you feel as I have dialysis-pants as it as Jen says as a fall back. But I do understand the emotions of seeing other's get their chance when you are still going through the crap of the illness nobody signed up for. And because we didn't ask for it we can have a why me??? from time to time and it HAS to be as guilt free as possible. It is a survival mechanism for us all. But the true fact of the matter is that no one should be waiting and wondering if that chance will come and it is your campaign which may help the situation a bit so more people get that chance.
I hope every day to hear news you have been called and one day it will come and then it will be the best breathers for you.
Take care Emily.

Michelle/Angel for KPG

Anonymous said...

Everyone is entitled to an off day now and again - looks like yours is today!

Tomorrow is another day altogether, you couldwrite some of those Christmas cards.........

Anonymous said...

Emily aww an emotional post. Can appreciate to 'some extent' about others' being called fwd for transplant etc lotta mixed emotions etc remember feeling same when hearing of others' all recieving transplants etc even wondering if she was realy on the lsit etc although had several false calls only bleeper go off due to batteries, atmospheric pressure esp thunder storms! and so on....Really trembled when 1st false bleeper call went off n Rach shaking her head saying -NO!!!.......Then when it really did heppen was soo not expecting it a simple fone call........the rest much of a daze and truly the 'gift of life'. Through your & Emmas campaign all helps towards more organ donations. One day soon............ will be your turn Emily.

Sending ((hugz)) and positive vibes your way......

Elaine Rach & family xx

Anonymous said...

Hi Emily,

Don't really know what to say apart from chin up and your time wil come!!! I know it is way easier said than done!!
Just saw some news which first of all made me sad and then I saw the positive side!! News just broke that Gordons brown son has CF and felt a bit sad cos I know what my partner has gone through and what you are going through right now. Then I thought that maybe this will be a good thing for CF and it will get way more focus now than it otherwise would have!! The future Prime Ministers son has CF and that can only raise awareness and fingers crossed that Brown junior will never even need to go through the transplant process as they will have found a cure by then!!!!
Hope that brings a smile!!!


It's Her said...

Hi Emily,

Sorry I haven't written you a comment in a while. I can't say I know how you feel about the false alarms, but I can completely understand where you're coming from. Hopefully you won't have to wait too much longer. Thinking of you, Rosie xXx

Emmie said...

Hey lovely, I wrote you a comment earlier today but somehow it seems to have been eaten *sulks*

Anyway, I was saying that although I have no idea how it feels to be in your situation, I am certain that the feelings you are having a totally understandable and not selfish in the least. After all, what is selfish about wanting to live and not die?

It's the crisis of the lack of organs that puts people in these situations that is the problem, and is one we need to highlight more when raising awareness. Living as you and all the other people on that list are, is like your life depending on the turn of a roulette wheel. I'm not suprised you have a massive emotional tumble when you can see others getting a chance that just won't seem to come for you.

Oooops sorry, rather a long post. Really I just wanted to send you oodles of love and hugs. Can't wait to see you in 5 DAYS WOOOO!!!!

Big MWAH xxxxxxxxxxxxxxxxx

Anonymous said...

Em - there's nobody I know with better reason for a moody rant, and nobody more likely to be over it by tomorrow.

Never stop hoping and never try to hide how you feel.

Thinking of you.

Nick & family