For a while I’ve been feeling like my body’s a bit broken, like it doesn’t quite do what it’s supposed to. It leaks blood, I have difficulty breathing and sometimes I have absolutely zero energy. Stuff kept getting worse until spring this year, when I had a kind of hilarious seizure over dinner in Nando’s. As I lifted my head out of a jumbo chicken platter and my friend shivered in fear next to me, I realised that something was probably wrong. One trip to A&E, a few episodes of immobilising fatigue and countless inappropriately-timed nosebleeds later, I’ve worked out the problem and broken up with carbs once and for all. Why carbs? I’LL TELL YOU WHY!!!1!!
It turns out that I have a confusing blood disease called Gilbert’s Syndrome, which is a bit like jaundice and a bit like liver disease. I really don’t understand, but as a result eating carbs gives me headaches and really bad fatigue. My dad (who passed it onto me, cheers) is living proof that it’s going to get worse as I grow older. I was diagnosed way back in May, but the effects have been creeping up on me all summer and reached a peak a couple of weeks ago when I was getting through a loaf of white bread and spent 3 days in bed convinced I had depression. Oops. Although there’s something a bit romantic / Alice and Wonderland about being lulled to sleep by an indulgent slice of cake, it does suck. Anyway, having asked around and spoken to my dad I realised that I needed a diet change. Now I pretty much just eat protein and salad, and I feel great, so GO ME. I should be on Oprah.
When the doctor told me I had Gilbert’s syndrome, he made it sound like the best thing in the world. According to the NHS it reduces the risk of heart disease significantly and makes you more yellow/tanned than your friends. Hurray! The issue is that this is basically bullshit. My dad has had open heart surgery, and I kind of wish I was paler. Life is so hard when you have a non-life-threatening disease in a first world country 😦 . There are some hilariously angry online groups determined to spread the word about those of us who suffer fatigue and other complications due to our disease, whose words I turn to when I feel like a little flush of pride. I gleaned from such sites that I can call myself a Gilbert, which is a bit cute, no? Here’s a youtube comment on a tragic video about Gilberts:
ok people we r all gilberts here …we should be happy and thank god cause we r really lucky …only 5 % of people have gilbert and they are well protected by the bilirubin against heart diseases and cancers …we live longer and have better health than other people …so smile everyone ..and about the fatigue thing its ok ..not really that bad …and to the chick who posted the video here !!!! ur soooooo cute !!! lets marry and have baby gilberts me and u !!! yayyyyyy
Whoever wrote it is clearly annoyingly happy and not at all cynical enough, but hey, yolo. This other comment made me want to turn all the lights off a cry in the corner:
I was diagnosed with it 9 years ago, i too get fatigued, sometimes get brain fog, thing i miss was all the energy i used to have, but, i still jog and excercise, good luck
IN OTHER NEWS:
I’ve managed to become deputy editor of Exetera magazine (check it out) and I’m still a-blogging for Exeter Fashion Society. I’ve also met someone great, and life’s pretty good when I’m not watching my housemates eat rice and crying because it’s a joy I’ll never experience again. I’m also ploughing on through my English degree, trying to resist the urge to kill creative writing students who think that they’re too intellectual to wash or give a shit about their appearance. A couple of weeks ago I bought a coat in Topshop and it felt like the most brilliantly rebellious thing I’ve ever done. Screw you, mum, you spawned a gender warrior.
Finally, because I’ve been doing an insane amount of reading (by my standards), here’s a nicely condescending list of books you should read if you feel like having a deep/meaningful moment. Cute.
– Mrs Dalloway by Woolf followed by The Hours by Michael Cunningham. Devestating/beautiful combo.
– The Line of Beauty by Alan Hollinghurst if you want to read about rich gay guys coming-of-age and doing a lot of coke.
– Less Than Zero by Bret Easton Ellis if you want to read about rich guys coming-of-age and doing so much coke that Hollinghurst looks like Enid Blyton.
– A Million Little Pieces by James Frey if you want to read about a guy who already came-of-age and did EVEN MORE FUCKING COKE until he had fucking holes in his face. frsiuofjsklfjdkslfdjdkls.
– A Single Man by Christopher Isherwood so that you can watch Tom Ford’s movie adaptation with your dumb friends and make intelligent-sounding comments about his interpretation of ‘the text’.
If you liked this, you totally might enjoy Life Without Ovaries.