(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.
4 weeks ago