Tuesday, August 15, 2006

Yesterday was a puffy day. Puffy days, when I have them, seem to follow a pretty regular pattern. The day starts off fine, where I get out of bed ok, heartrate jumping to about 160 but that isnt unusual, lungs feel ok, so I start moving about in probably an overenthusiastic and unnecessary manner. As the morning progresses, I get a sort of tightening across my chest, it feels a bit like a vice is being wound tighter and tighter, and I get more and more breathless. By lunchtime, I didnt even have enough breath to swallow my painkillers, which was vaguely ironic as they clearly would have helped ease the muscle ache which was setting in. The physio came round and was so sweet, she looked really sad because usually they would be able to help by using a machine such as the Bird or something to give me a break, but as my lung resembles a colander that isn't an option. If you are running and getting exhausted, you stop, but you cant stop breathing, so you just have to ride it out.

Not being able to breathe, even when you are lying completely still is not a nice feeling, and I sometimes get a bit panicky and/or upset, which is completely ludicrous and quite possibly the most counterproductive thing I could do, except for getting up for a brisk jog or something. Deciding this was rediculous, I did what most people would do when they are feeling a bit tender, I called my mum and she came whizzing up and "carried me around on a cushion a lot" (that's what she always says she will do when I am poorly, havent quite worked out what the medicinal implications are supposed to be but it sounds like fun) and of course my breathing improved over time and by the evening I felt much better.

I have this strange sort of logic worked out in my head that when I have a really bad day like that, it means that it is all the more likely tomorrow will be a good day. Probability experts please dont correct me on that one, I like my random mathematical interpretation, and anyway it turns out I was right. Today has been much better, with a mild breathlessness episode around midday, but I slept it off, and then I went for a walk with the physio and walked the ENTIRE LENGTH OF THE WARD (yes I am shouting that as I am rather chuffed). It was just the most fantastic boost for my morale, and it makes September 3rd seem much more achievable. And it wasn't merely walking, it was walking in a comical manner, so as to stretch and reawaken various muscles which have withered away to nothing over the weeks, including walking on tiptoes, lifting my knees up and attempting to kick my own backside. I should be paid for my entertainment value really. The moral of the story folks is this: when it seems as if the day couldnt get any worse, plough through it and focus on the fact that it means tomorrow must be a good day!


lil fairy said...

Miss emily what are you like eh? I have to say tho, i love your strangly random yet very good theories. so YAY for a good day today and lots more good days and tell the puffy days to buggar off, tho being carried around on a cushion does seem somewhat entertaining.
take care muchly love and huggles

Anonymous said...

Pah to puffy days! Keep up the good work Miss Em :D

Best always,

~ James

Anonymous said...

Em's Ministry of Silly Walks.

A sight worth seeing! Glad you're up and about again


Anonymous said...

I gave you a "Yey!" on the training blog, but I think you deserve another one so, Yey Em! I hope tomorrow is even better :) Keep resting up and...try to kick your own backside abit more...! Lots of love xxx

Anonymous said...

Yay for a good day sweetie.I'm testing your theory at the moment,yesterday was a good day but the day before was all coughy and puffy.So,having a rather puffy day today myself,judging by your theory I should have a great day tomorrow,woooo-I hope lol.I rather like the idea of walking around kicking your backside,I might try that-sounds fun and good for me!!!hehe.
Keep up the good work toots.
Nic x.

Anonymous said...

Em. You really and truely are an inspiration. How you keep your spirits up through all of this is beyond me. You've had me in tears and laughter reading your blog. I can't wait to meet you, if only to see you kicking your own bum!!

love and hugs xxxxxxx

Anonymous said...

I love your posts. I love your lust for life. You amaze me.

I did major updating on

The link to your organ donation site is up. At the top! I pray you get through this and show CF who's boss! You rock!

Much love from the USA!

James said...

Emily, I am following your posts with such admiration. I recently discovered our soon to be born son will suffer from CF so have been doing a fair amount of reading as you can imagine.
I had to comment on your recent posting. Great to hear you have had a good day and could help but smile at the image of you doing your silly walk routine. Hope today is an even better one.

J xx.

livvy said...

We so expect to see that silly walk on 3rd September as you cross that finish line with a massive grin across your face! There won't be an Angel with a dry eye to be seen though! Keep up the exercise - take it steady and no over puffing - see you in less than 2 weeks! XX

Sarah Milne said...

Here's to many more good days and much fewer nasty puffy ones. Hang on in there - you are doing so well!
take care
lots of love Sarah xxx

Music_Mad_Nic said...

can i have your little theory about good days following good ? ... thanks

well done on getting through the touch morning glad to know you still got your fight!