Friday, March 06, 2009

Home Sweet Home

Many thanks to everyone for your good and well wishes, they mean a lot. Foolishly last night, feeling great and pretty much pain free, I felt well enough to not take any painkillers. Of course this 'step forward' was forced backward at 6.30am this morning when I felt very sore. Totally my own fault; I'm always in too much of a rush to stop taking pain relief, and after a night spent lying predominantly in the one position it meant today I had the paracetamol on hand every four hours again. I hopefully won't make that mistake again, but likely I probably will.

I believe my appetite has always been incredibly poor (until after transplant, that is). I don't believe this has anything to do with laziness, stubbornness or any other aspect of my personality - although when push came to shove, I'm sure as a child I didn't make it any easier. I also don't feel my lack of eating reflects my parents' parenting abilities. I've read before how some people with CF say that their parents simply didn't let them leave the table until they'd finished their meals. My problem was a lot more serious then a simple 'Supernanny' method could cure. Even now, as I eat obese man portions, I know I'll still never require a diet; I just don't put on weight.

During hospital admissions, my parents would tell nurses when I was very young that I didn't eat, which they took to mean 'we have a fussy eater on our hands'. About two days later they (nurses) would tell my parents 'You know that your daughter doesn't eat anything??'. Yes.

At the age of two, my parents began nasal-gastric feeding - a tube up the nose, down the throat and a high calorie something-or-other infused every night; the tube was removed each morning.
I was about five when a permanent solution was decided upon: A hole made in my stomach wall, and a long piece of tubing would be put in. It would cut out the nightly traumatic event of nasal tube insertion (which considering this involved holding one screaming child down, while two other children occasionally looked on, and two parents alternated between holding, and inserting; it was traumatic for everyone); but it would involve cutting an outwardly healthy looking blondie girl open and acknowledging something else: that this CF thing was also permanent.

I had the long tube for many years before the smaller 'button' was invented. To say I hated the tube growing up was an understatement; I loathed it. I didn't care about chest infections, hospital times, taking feeds, I hated the tube. I cried to have it out but understood that I didn't eat properly so would, quite frankly, blow away without it. It was the only visible giveaway that I wasn't 'normal'. The cough could be explained, as could the skinniness, but not the tube.

To be fair, in later years, I praised it, it was great. But that was as I was older, I didn't really care what other people thought anyway.

So to have it removed and then for the hole to cause me problems was frustrating. I didn't mind the 'second belly button' really. Most people thought it was pretty cool. But now it's gone. That hole part of my life has been closed. I can't see what it [the scar] looks like just yet, but I'm hoping that in a few years, you'll never know it was ever there.