Wednesday, September 20, 2006

Even pink people who are made out of pretty strong stuff (the stuff brighton rock is made from or similar) reach a breaking point, and I reached mine today. It was an imminent cracking to be honest, I have been feeling increasingly more down despite attempts to pep myself up and knock myself out of it (not in the unconscious sense although that is something I shall bear in mind).

Due to having lots of time to think, I usually try and work out why I am feeling the way I am, psycho-analyze myself I suppose, and I think I worked out the root of my inability to sleep today. This thing of not being able to relax and to rest, and jerking awake every time I start to drift off – you know that feeling you get where you are falling and then you suddenly start and snap awake – it is happening with regular monotony. What should be a pleasant feeling of relaxing, muscles easing, breathing slowing, is somehow making my body click into an alert and fighting state, and I think (after a long and very cathartic conversation with a friend) that it is linked to the day I was transferred to ICU. As I said in my blog describing that day, I felt incredibly calm, peaceful and comfortable really, and yet of course was fully aware that I was actually fighting for my life, and at that point was very much losing the battle.

I think that this experience of feeling so comfortable juxtaposed with the knowledge that at that point I was in danger of dying has instilled a new fear of me, which I managed to vocalize to a doctor today (despite feeling thoroughly stupid and melodramatic whilst saying it) I think my body is scared of falling asleep and never waking up. There. The second time I have said it, well written it, and it brings on the tears again, but followed by a nice lift of weight from my shoulders. I do feel ridiculous saying it, as clearly I am nowhere near where I was 9 weeks ago, but my brain is struggling to cope with it all. These inbedded and unresolved fears, plus tiredness caused by them, coupled with todays X-ray revealing that just 24 hours after coming off suction my lung has started to deflate again meant the tears finally flowed today. Quite significantly.

I think that is a good thing, everyone needs to have a good bawl now and then, it’s healthy, and helps you pick yourself up and brush yourself off again afterwards. I am not going to be any kind of martyr however and am enlisting a bit of extra help and support. The team here really is great, they are going to work hard to help me get back on track, and if that means a team of people help me, denzel (my wheelchair), the O2, the drain, and the suction pump sit outside to have a coffee, then so be it! I am also going to speak to the psychologist here, think it will do me some good, and there’s quite a bit of the last 9 weeks that I haven’t really worked through yet. Lung wise, due to obstinate sagging of lung, the suction has been re-attached which of course throws a spanner in the works of the whole injecting the germanpowderstickyuppydrug, as the lung has to be up and touching the lining in order for the drug to stick it, otherwise I will just end up with a furiously inflamed and sticky lung waving wildly around a small airspace or something similar but more scientific and slightly less dramatic. We aren’t quite sure what to do about that yet, but the doctors are working on a new plan, and I will just stay on suction in the meantime, in order to keep the lung as upright and well behaved as possible.

The most important thing I have decided is to allow yourself a good howl, then look at ways of combating the difficulties, alleviating them as much as possible, and slowly moving forwards slowly but surely. Everybody has these moments; all will be fine I know it.

After writing the above I listened to a radio interview by Alan, Mary’s boyfriend, and two other people who knew and worked with Mary. The interview was fantastic, gave a wonderful insight into Mary and her hard work, but most staggering of all for me was Alan’s courage and strength in speaking so openly so soon after losing her, and still managing to plug organ donation, and to carry the torch for those of us still waiting and hoping for that gift of life. There is having to be brave and pick yourself up, and then there is phenomenal and selfless courage and strength as has just been demonstrated and has totally humbled me. Alan, Mary would be beyond proud.


Anonymous said...

Em - even you are human!! You cry girl if it helps. You've been through one hell of a time in the last 9 weeks yet you still leave us in awe of your strength and courage (not including naughty deflatey lungs). remember the darkest hours are those before the dawn and that you are not alone.
Sending loads of pink hugs

Emmie said...
This comment has been removed by a blog administrator.
Emmie said...

Sweetheart, you are amazing but you are human and you can hurt and feel frustrated and scared and all the rest, just like everyone else cos that's normal. Please don't expect yourself to always see the best in a situation, to always be positive, to always have to see things logically. At times we all just need to be held and told that yes, life is unkind and horrible and unfair and frightening sometimes.

But at the same time, you will get through this. Some days I've felt that the sun would never shine again and one thing I've learnt is that a day later things can feel so very different.

Sometimes I think you should let yourself stop being courageous, brave, strong Emily if you can't cope and let everyone who loves you look after you for a bit, be gentle on yourself and have a good cry. We all love you to bits so there are plenty of shoulders going spare ;o)

Love you lots xxxxxxxxxxxxx

Nicola said...

Here,here Emmie.Sweetie,there are lots of us who will quite happily give you a great big hug,and lend a shoulder for a good old cry.In fact,I've sent a huuuuge hug your way,first class so you should be recieving it right about now.

I know if I was in your position right now,I would have felt like you do long ago.

Just keep looking forward to better times,they are just around the corner.

Muchly love and hugs xxx.

Anonymous said...

Dearest Em, cut yourself some slack sometimes! I think you are doing really well to hold things together as well as you are. I hope you manage to get some quality rest tonight. Sending lots of fluffy pink vibes your way.
Best always,
~ James

Jac said...

I know that speaking the fears outloud and indeed writing them down in black and white does not make them less real, but I sincerely hope that the old adage "a problem shared is a problem halved" stands true for you.

To not experience such thoughts and fears would not be strong Em, it would frankly just be odd. What is strong, is being able to identify these fears, speak them out loud and then tackle them head on.

However this tackling is not to be done on your own..just allow your friends, family and the wonderful CF team to carry some of the weight (and the oxygen cylinder/drain for practical reasons). I'm sure the journey will be so much ligher, and less scary, with all those comrades by your side. We will see you complete the ultimate challenge and come through it with new lungs, and more importantly, a new life.

Always here for you,
Jac xx

Anonymous said...

Hi tiny pink poppet,
you poor love - heavens, do I know how you feel! Having trotted around last year for 5 months with a punctured lung (despite the fact that I was a permanent shade of an attractive blue hue due to lack of oxygene no-one noticed because I had oodles of inflammation everywhere after a bad fall) I spent quite a bit of time in ICU and never felt anxious. Now that I am fully recovered there are moments when I feel exactly like you have been feeling; total panic and fear of not waking up. So look on it as a good sign!! When we are really really ill there is no fear, it's only afterwards that realisation hits us. So be very kind to yourself and let the tears flow. There will be good days and bad days but little by little the good days win out so keep on fighting, you have a very busy life out there just waiting to be lived. Take care pet.

Anonymous said...

Hi hunny - you know me well enough to know that I am not a naturally tactile 'pink & fluffy' person...dark and prickly is my default setting. I hope then that you'll realise how much I'm stepping out of my comfort zone to send you the BIGGEST, PINKEST, FLUFFIEST SWEETIEBOBBLE HUG IN THE WHOLE WIDE WORLD.

Anonymous said...

I see it as a sign that as I logged into your blog Starship's Nothing's going to stop us now came on the radio.
At the moment it is singing about getting through this together and that is what everyone here reading this feels. Sometimes you cannot do it on your own and you need others and please know we are all here holding a cyber hand out.
I can't completely identify with what you are going through but I understand enough to know what a very hard place this is to be in at the moment and it is cathartic to cry.
Take care and we are all here for you.

Much love and hugs

Angel from Kidney patient guide

Simba said...

Angelly sweetie, you so, so, muchly rock that you are in a totally different pyramid league. But even pyramid-strong pink peeps have down days and as all your lovely friends have said, err hello we would've been having them months ago.

But the good thing about pyramid-types is that they realise when they could do with a bit of help sometimes. We're all here for you but I think seeing the psychologist is a good idea. I hope Liz is still there as she's as lovely as can be and should really help you with your sleep fears, which are totally rational by the way.

Hope you feel better soon, Ms Simba xx

Anonymous said...

EM WILL YOU PLEASE STOP BEING SO HARD ON YOURSELF WOMAN!!! whew-i even scared myself a little there. my beautiful strong gal, it is ALLOWED. and whats more-necessary. as you have duly noted (well done my lovely, i know its difficult for you to let yourself feel a little fragile!!), it is healthy, normal and totally ok. when these moments start to overwhelm, just let them be. they'll get bored and wander off to bother someone else after a while, and you'll feel ten times stronger for having seem them off. everyone feels a bit wobbly at times, and you of all people are entitled to a wobble-why, things have been more wobbly for you recently than a whole stack of jelly (mm jelly). your tears only make you more gorgeous. all my love xxx

Anonymous said...

Em, those lungs have always been extremely stubborn and this is just another opportunity for them... the greatest thing is that they are not as stubborn as your strong will and will soon inflate themselves and stick so that you can have the new treatment.. Anyway you are perfectly entitled to a good old bawl and don't forget you can call me and anytime...


Anonymous said...

I don't know what I can add to all the lovely things everyone else has written, but I hope you know that there are lots of people who think you are amazing, whether you're happy and smiley, or down and anxious, you are still an inspiration to us all.
I hope the chat with the psychologist helps you work through some of these hard thoughts, and that you can get some sleep and so start to feel better and more awake :) And I hope that lung starts to behave itself soon!
Lots of love, hugs and smiles xxx

Anonymous said...

Oh Em! I hate it when u feel like this and there's nothing that I can do to help and you're so far and stuck in there! But I want u to know that I'm always here whatever u need and I'm up for a moaning session anytime! Hehe. We are all thinking of u and love u loads so let us help, ok! There's nothing wrong with crying either- it does help sometimes and it's better to let it out than keep it all in. The situation you're in is soooo crappy I don't know how u manage to be so positive all the time anyway... I think it's good to actually sit back sometimes and think, yeah actually, life is crap then have a cry... does a world of good. Thinking of u, love u lots. x

Anonymous said...

Hi Em

Lucy has just blown you a huge kiss and hopes that it will make you smile.

I can't add anything much to all of these lovely comments, except that if anyone can get through this you can. I have never met such a strong and beautiful person.

Sending you oodles of love and hugs.

Bev and Lucy xxxx

Anonymous said...


I hope you feel better soon, and just to echo what everyone else has said, 'A girl needs a good cry once in a while!'!!

Sending pink smiles, suns, flowers and fluffy tacky things your way!

Rosie, x

Anonymous said...

I think that Mary would be beyond pround of you also girlie! You too are phenomenal and selfless! Just look how you bring us all together. If there are tears then so be it, I only wish I was there to supply the tissues.......

Thinking of you with lots of love

MoO xxxx

Anonymous said...

All these lovely comments show how much everyone cares and feels for you. It is not a sign of weakness to cry or voice your fears, you can reach out to your friends all of whom have told you they are here for you, thinking of you and supporting you always. You are an inspiration to many and loved by all, so dry those tears and give those lungs a good talking to!!! You are the boss!!! Take care and smile again very soon!!! Sending lots of pink wishes xxxxx

Anonymous said...

Emily ,I know what you mean when you say your body doesn't want to sleep its on fighting mode and is always ready for what life throws at it and that has been a lot .Its hard to tell your brain to shut down and have a rest lets hope it gets tired soon and gives you a break.Also with all the noises going on in hospital its hard to sleep at the best of times ,I know I always want to answer the phone when it rings in the middle of the night and also listen to the nurse gabbing (guess I'm nosey) You are entitled to a good cry anytime you feel like it ,and you are an amazing girl and after you have your transplant you should publish a book with all your blogs in it ,you are an inspiration Emily ,god bless..Annex

Freya said...

Em you are becoming nearly as naughty as that pesky lung- stop trying to be superwoman!!!

you are the strongest person person in the world ever (even stronger than mr strongman from strongville) but that doesn't mean you can't have days where you need to throw one big tantrum!

you know better than anyone that life can be a bit lame and it's quite alright to have a big moan about that every once in a while. Sending you sooooooo many pink and sparkly thoughts and i hope all that catharticism (hark at me making up words) will halp you sleep better


Anonymous said...

Oh emily , im so sorry that your having a rough time again , anytime mary didnt feel good she always had a good cry and sometimes me along with her ,which isnt a pretty sight :).... it always made her smile the sight of me bawling along with her , i hope things pick up for you soon hun , and thank you for your comments and txt messages, it means so much , and remember mary is still holding your hand , side by side , sending you all the love mary gave me xxxxx love Alan xxx

Anonymous said...

I can't say anything more than everyone else, just be sure that there are many, many people holding you close in thought, those you know and many that you don't. I'm sure I'm not the only one to feel completely helpless and powerless to make this any easier on you...but I pray that the sun breaks through those horrible dark clouds that you're fighting at the moment.

Sending you my love.

Carolyn x

Anonymous said...

If you have aol instant messanger you can message me on dark_iris_eyes

If you dont have it, youd should get it! ;)

I would love to be able to have a convo with you. I have been dying to!


livvy said...

Emily - You know I don't like it when your feeling upset and low and I may have to go out and get you another doggie today to come give you a cuddle!
It is truely understandable the way your feeling - you've been stuck in there for over 9 weeks now and it can't be easy (understatement), so have a good cry - keep on crying until you pick yourself back up and turn all pink and smiley again.
I'll have something to make you smile very soon! :-) xx

Sarah Milne said...

Em, Everyone else has said everything really. Do let yourself have these moments . You are human and you have every right to be terrified, angry, upset... I had a few days after Paul's accident when I was so so angry that such a thing had happened to our family on top of everything. I can only describe myself at the time as in a state of panic and I didn't want to go out anywhere or see anyone. I couldn't sleep, I didn't eat. In the end it came out in hours of tears for Paul, for Wills but also for me. I had a right to feel that way too as life was not going exactly according to my little childhood dream! Your life isn't exactly doing that at the moment either so be kind to yourself and let those wonderful people who love you so much look after Em's emotions and fellings as well as those naughty lungs. I so hope you bounce back soon but GIVE YOURSELF TIME!!!
loads and loads of love and a big "cuggle" from William. Sarah xxx

Anonymous said...

I don't know what to say to you today Em.. which is really crap.. but in the interest of saying something and wanting SO much to be able to make a different (unrealistic though that is I know).. just want to say I am sending you love, hugs, ~~~~~~~~good vibes~~~~~~~ and kind thoughts.

Clare xxxx

PS If love could get you what you need, you'd be the healthiest person ever.. you can just feel the warmth coming off this comment section and how much everyone cares about you. And some of us (like me) have never even met you!

Anonymous said...

hear hear Emily on the last comment - love can move mountains and even those of us who haven't had the pleasure of meeting you are worrying our heads off over get better soon. May your weekend be filled with lots of rest and laughter and be completely free of pain and discomfort. Remember to get back in the driver's seat; your body must follow the dictates of your mind so make sure to keep impressing on your mind thoughts of perfect health. Am thinking of you always. all love, Janet

Anonymous said...

Im hoping this gets to you before the men in white coats do!

But seriously (or semi-seriously as Im no good at real seriousness) You are the strongest person I know. To write like that must be one of the hardest things to do, and it is not silly to feel the way you do.

Your normal self will be back before you know, when the secret sweetbobble fairy scatters glitter balls of happiness and inner peace down upon you!

Em. xx

Anonymous said...

Emily hope that you have recieved our card to you in hospital etc. Just thought send lots (((hugz))) and cute forever friends card to you :D

Rachs 1st kidney transplant anniversary today lotta mixed emotions etc the amazing 'gift of life' and eternally greatful to donor & their family. Cant belive the difference it has made to Rach & al of us from such a 'gift'.

Rach as ever doing as much publicity as she can with friends colleagues at school family etc. Feels that she wants to help others' like yourself who are also in need of a transplant etc.....
Keeping fingers crossed 4 u ;)

(((hugz))) Elaine Rach & family xxxx

please say hellot o your friends & family too.

kirstygee said...

Hey hon, I just wanna let you know how much I'm thinking of you. Like stated we all have very ig shoulders here.

Pinkness and hugs alll round x