Monday, December 11, 2006

(2nd installment posted by Emmie, I shall have to start paying her.....)

Things are most definitely improving, I’m sure of it now, so time to do a little celebratory dance (mentally though so as to dupe lungs into a false sense of security in the hope of continuing progress). The dizziness and sickness is really a very small price to pay if that is my main concern this admission as opposed to the “lungs could fail at any moment” scenario I was in in the summer, and I am hoping to head home at the end of the week.

My main problem at the moment still appears to be talking. I really can’t take this problem seriously as it just sounds so pathetic and somewhat amusing, but it is actually a bit of a concern as talking is my favourite pastime. In fact it is more than that, as well as being born with CF, I was born with an innate inability to shut up (which as it happens was also inherited). Obviously since being in I have been talking a lot less and consequently have felt a vast improvement, aided by the IVs extra meds and physio. These puffy episodes are so much easier to get on top of in here because when my lungs are telling me to lie perfectly still and hardly breathe I can actually do that, whereas when at home little essential things like getting a glass of water and making lunch become huge marathon efforts if my lungs are in one of their moods. The last few days however I have had a few visitors and been chattering away like an overexcited chipmunk, resulting in two puffy afternoons and I am now back on my higher O2 mask. Sadly after 22 years I still don’t quite seem to have got my head round the concept of “improving” as opposed to “magically cured and reinstated with working lungs” and so the minute I feel a turn around I start jumping around and doing lots and then am surprised when said behaviour doesn’t go down well with my lungs which were (for want of a better phrase) breathing a sigh of relief that I was finally operating on a level they can maintain. I mentioned to my physio that you’d think I would have learned by now, she neatly sidestepped this remark by laughing politely and neglecting to comment.

It feels strange as the end of the year draws closer, and I tend to do quite a lot of thinking about the events of the last 12 months, as I’m sure most people do. It has been an incredibly diverse year with dizzying highs and earth-shattering lows. But as I am always lucky enough to find with my life, this year has made me even more determined and eager to experience and to cherish the next. When mulling over the years events I figured out that I have spent about five months in hospital in total since January, a new record for me. This, combined with the final point below also lead me to doodle the following list on my napkin (which provided an easy to write on surface confirming my suspicions that they are more suitable for scrawling on than wiping ones hands and face with)

You know you’ve spent too long in hospital this year when:

-You know the lunch menus of by heart, and don’t even need the special diet menu anymore as you know which number box correlates with which choice.

-Nurses ask after each member of your family. By name.

-The radiographers know you and also that you are an anomaly and will therefore require two X-rays (no arguing, yay!)

-Doctors, nurses and physios who aren’t actually treating you pop in to say hi and see how you are doing

-You can tell the trainee nurses which cupboard and on what shelf the 35% mask is on.

-The tea lady knows how you take your tea.

-You own more sets of Pajamas than any other type of clothing.

-You’re excited because you got a portion of Cheshire cheese with your crackers instead of the usual cheddar

-You find yourself crying at Herbie the movie – a clear sign you are losing your grip on reality

I am feeling very upbeat as there is just so much to be happy about and look forward to! The apparent improvement in lung behaviour is boosting my confidence, so I will continue to work hard on meds, physio and rest ready for the spangliest Christmas in the world ever. I think the main reason I love Christmas so, is that it’s the only season I can openly flout glitter and sparkle everywhere without having to explain myself as the rest of the world seems to be participating. Consistent to all areas of my life and personality I am being totally unorganized and have as yet done very little Christmas shopping (being in hospital isn’t really a legitimate excuse as I am fairly certain I would be in the same state of unprepared-ness if I was at home). This evening I shall be mostly writing press releases (in the vague pretence that I am able to do so) sitting wiggling and singing (mentally) along to various upbeat songs whilst steadfastly ignoring the pile of Christmas cards sitting at the end of my bed waiting to be written.

17 comments:

Emmie said...

So glad to hear you are feeling so shiny and sparkly hunni! I have wondered for some time how on earth you manage to talk so much with your itsy bitsy lungs. I have to ration how much I talk and I've got twice the lung capacity!!
Sending you a big fat hug sprinkled with pink Christmas glitter xxxxxxxxxxxxxxx

Jacqui ( and Jake!) said...

Glad to hear you're feeling upbeat. Keep those good vibes flowing. x

Anonymous said...

hey hon
sorry to hear your in hospital again but glad to hear your now feeling a little better. sorry for the lack of contact - i always read your blog so i feel like i'm in contact all the time and forget to actually email you! Very bad excuse i know! take care hon! Emma L. xxxx

James said...

Glitter and sparkle makes the world go round - or at least it should :D

Keep up the merry making!

Hugest hugs,

~ James

swissfriend said...

Hi Emily, it's so great to find you all chirpy again; thankfully you are totally indomitable which is why you are getting so much better. Here's hoping for “magically cured and reinstated with working lungs” sooner rather than later. You so put your finger on the familiarity of hospital life with your amusing list - though 5 months out of the year is way too much. Please do not repeat this performance in 2007!! Keep on resting those little lungs to let your body have a chance to keep improving things. And I do hope you will be able to get back to chattering like a magpie soon, as it's such a vital part of you being you.

Continue to take good care of yourself so you can have loads of energy to enjoy the Christmas festivities. God bless, J.

Anonymous said...

Emily, this is Randall. For Christmas from you I'd like you to get your Double Lung Transplant, recover and live a long time. My present for you, if/when we meet, I'll give you an extra big hug. Deal???
Hope you get out before Christmas. When I had my brain surgery, I was in the hospital for Christmas and New Years, not the funnest (sp?) of times.
Just said a prayer for you.

Get well soon, Love, Randall

Oli said...

Glad to hear you're on the up.

Am also impressed at Emmie's secretarial skills and will have to keep her in mind for when I'm next abducted...

Stay restful, chuck.
x

Sara C said...

Hey fabulous small pink one! It's Sara here from uni. Good to hear you sounding positive (although I have to say I don't think I've ever heard you anything but!) Just wanted to let you know that you are often in my thoughts and am constantly moved by your daily writings and musings about life. My uncle wanted to find out if he could still donate to Emily's Angels as a sort of alternative Christmas present (much better than a goat from Oxfam I say!). I explained that the online collection is now finished but said I'd check with you whether he could donate elsewhere. Please let me know as I may encourage my other family members to do likewise.
Hugs and twinkly Christmas wishes to you.
Sara xxx

Sara C said...

Hey fabulous small pink one! It's Sara here from uni. Good to hear you sounding positive (although I have to say I don't think I've ever heard you anything but!) Just wanted to let you know that you are often in my thoughts and am constantly moved by your daily writings and musings about life. My uncle wanted to find out if he could still donate to Emily's Angels as a sort of alternative Christmas present (much better than a goat from Oxfam I say!). I explained that the online collection is now finished but said I'd check with you whether he could donate elsewhere. Please let me know as I may encourage my other family members to do likewise.
Hugs and twinkly Christmas wishes to you.
Sara xxx

Jac said...

Glad things are picking up and you are slowly learning the benefits of not talking. Be sure and explain them to me when you get home ;-)

Keep sparkly..its nearly Christmas!

Love and higs
Jac xxx

Sarah Milne said...

Lovely upbeat post Em. Glad things are looking better! I could answer yes to everything on our list about alll the hospitals William goes to (except the food related ones as he doesn't eat anything!) Hope you are home at the end of the week and have a fantastic Christmas!!!

suzie said...

Hiya Em,

Good to see you posting in cheery manner as always, will despatch some duck tape to aid the recovery and you'll be out of there in no time. I wonder if it comes in pink and sparkly?

Sending many hugs from all here, stay erm....quiet.
Sue & Chris x

Fi said...

Take it easy Em, but get those cards written!

From one who hasn't even bought hers yet....
Fi
xxxx

Cory said...

"-You own more sets of Pajamas than any other type of clothing."

Do the sell those ones that have feet attached in England?

Anyhow, it's great that you are able to entertain yourself and have a good reserve of energy, which is important to keep in good shape until tx time. I think you of all people will get it.

Anonymous said...

Glad you are feeling a little better and hoping to be out by the weekend! Enjoy all the glitter and sparkly things when you do mske it out!

xx Sandy xx

swissfriend said...

Hi Emily, I did post a message earlier but it seems not to have been registered. Just a quick word to say I won't be able to access your blog until Dec. 27 but will be thinking of you. Have a wonderful time at home for Christmas with your family. All love, Janet

Jayne said...

I hope you escape soon from there too.

You did remind me though, about Christmas cards, I've not even thought of writing mine yet, I forgot all about them!

Take care

xx