Monday, July 31, 2006

Diagnosis: Gilberts Syndrome. That explains everything.

After nearly four years and numerous procedures my latest hospital trip is going to be my last for a while now. Not much point me going every three months to be weighed, drained of blood and told nothing has changed when they couldn't do much about it if it had. Better to leave that sort of thing to my GP apparently. It's up to me now to look after myself and make sure I don't have to repeat this wonderful experience. Hmmm, that'll be a good incentive then.

The problem is I now know what the problem is! I have been diagnosed! 'Surely that's a good thing' I hear you mutter under your breath so the boss doesn't hear you and realise you're surfing blogsites instead of doing work.

Well it is in a way. I now have a better idea of what I need to do to keep myself healthy(ish) but on the minus side, everytime I feel a bit off it's because of the Gilberts, if i'm tired it's the Gilberts, if I can't concentrate it's the Gilberts. If I've just spent twenty minutes on the loo suffering hideous stomach cramps whilst every last dreg of every meal I've eaten in the last three months is forcibly expelled from my bowels it's the bloody Gilberts (alright so in this case it probably is).

The point is I don't want to become someone who's entire life is governed by their condition, either in their own minds or in other peoples. Yes, Gilberts Syndrome does cause fatigue, but so does going to bed at 3 o'clock in the morning. No I shouldn't really drink Alcohol but a couple of beers now and again isn't going to hurry me to an early grave. Fatty foods probably aren't a good idea but that applies to everyone and in the last six months i've lost a stone, how have you done?

It's hereditary, there's no 'cure' and i'm stuck with it. Some days I feel utterly shite, some days I just want to put my head down and sleep for 24 hours but until last week I just thought it was how I looked after myself in general and I should do something about it. Now, if I choose to, I have a label to hide behind and use as an excuse.

If I do, then you have my permission to slap me.

16 Comments:

Anonymous the letter b said...

sorry to hear about what your going through, sparx. if you insist on having the obligatory alcohol, try red wine. though i don't categorise it as alcohol per se. that's what the bf [who has high blood pressure] had been quaffing just for a number of week's [soz for not being specific as we just had an, erm, argument in thermonuclear proportions] not touching his beloved Budweiser [for an englishman to drink an american "beer"?!] - and voila, he lost weight! after ages of going to the gym. further proven my point that gym is not the solution to keep one healthy.

5:47 am, August 01, 2006  
Anonymous Mad said...

"Gilbert's syndrome is a common inherited disorder that affects the processing by the liver of the pigments in the bile called bilirubin. This results in an increase in the level of bilirubin levels in the bloodstream and can lead to a yellowing of the skin and the eyes, that is jaundice. The liver itself is otherwise normal and people with Gilbert's syndrome have a normal life expectancy. It is common and not a dangerous condition in any way."

I had to go look it up, which is unusual as I'm good with medical conditions. Sounds like big girls syndrome if you ask me. :p
Seriously though it sounds like a pain, I hope it doesn't bother you to much and I prescribe regular rides on your funky orange Zed as an antidote.

8:36 am, August 01, 2006  
Blogger weenie said...

Sorry to hear about your condition. I'd agree with the first post: red wine (in moderate quantities) is supposed to be good for you, my dad's consultant recommended it to him after he had heart by-pass surgery. Hope you have more good days than bad.

9:02 pm, August 02, 2006  
Anonymous Mad said...

I was wondering if you get any interesting drugs for Gilberts?

11:27 pm, August 02, 2006  
Blogger KT Did said...

Geezzz... Sounds hurtful... hope you feel better soon... Red wine for the heart is good but alcohol for the liver is not. Just stay away from it and get clean with an enriched diet. You need to ride not lay in the hospital beds! Feel better soon.

1:21 am, August 03, 2006  
Blogger sparx said...

Thanks guys. I'll bear the red wine in mind. Problem is, i've always thought the red stuff was only ever good enough to sprinkle over chips.

7:55 am, August 03, 2006  
Anonymous the letter b said...

not at all, matey. alternatively you could give guinness a go. i've always sworn by it, such that i've had never fallen ill ever since. better than red wine anytime, definitely.

[i don't know but over ere on this wee islet, i always associate wine with those who have just "arrived" - read: noveau riche, or those who suddenly rise above their station, like by way of partnership with white fella's - would drink wine to be seen as "sophisticated" or appear "classy". finger, throat.]

2:04 pm, August 03, 2006  
Anonymous Anonymous said...

Bad luck. Or is it Good Luck that you at least have a name to hang on the condition?

I do find that a good merlot is helpful. For what its worth, they suggest I do not drink either (I'm Diabetic) (With a Heart Condition) (and Apparently Reactive Arthritis to my Blood pressure meds) What? I forgot to say I have High Blood pressure?

Anyway the result is it limits my mobility (pain in the hips) and my shoulders are giving me trouble as well.

Can we have a Health Swap meet? We could all get together and swap our least desired symptoms for someone else's, until we get a set of symptoms we all like.

4:25 am, August 20, 2006  
Anonymous sheep said...

Hey sparx, we have a few in common, i got gs feel shite everyday, sick most days and could sleep for a year yet never gets to sleep....Big Orange Zed , im assuming is a Kawasaki as i have a Big Purple Zed , zrx1100 along with a z440,Gpz550 , hey buddy hang in there they dont get better but you learn to say F*^k It , Toking a smoke dont work neither but what does is staying happy , yer still feel like s*^&%e but your happy......

Stay safe and dont let it beat yer down

2:36 am, January 30, 2007  
Anonymous Anonymous said...

Hey, well I have Gilbert's Syndrome as well but the strange thing is.. when I was reading what you wrote I really had no idea what you were talking about! I've known I had it since forever and I'm perfectly healthy, I never get headaches or anything else... I'm hardly ever sick.. If I'm tired it's because I went to bed late, and that's about it! All I noticed is that my skin is a little bit more yellow than other peoples, but it's nice because it just looks like I have a tan... so yeah i really dont know why its such a big deal to you, I mean, its really nothing

8:31 am, November 19, 2007  
Anonymous Anonymous said...

I'm 44 and found out I had Gilberts 3 years ago and it sucks.

I'm almost constantly with a slight 'tan', alcohol is a definite no no as I just can't process it and end up totally loaded on the smallest amount( always wondered why I was a cheap date..)I get stomach pains for no reason that I know of, and I'm constantly on the point of exhaustion if I don't get a straight 8 to 10 hours sleep each night. Yeah it may not be dangerous per se but it sure as hell affects your lifestyle, does mine anyway. Went clubbing with my mate Friday night to celebrate her Birthday, had about 6 shots of vodka and lemonade over a 7 hour period, don't remember much after that, what I do remember though is taking til monday morning to feel normal again, Jesus, I'm going teetotal now, I've never felt so rough.

7:44 pm, November 26, 2007  
Blogger franny said...

HI, Bin told I may have GS - yellow in eyes and definite intolerance to alcohol. Its so boring when the rewst of the world seems to worship it and i watch people blah blah on as they quaff. Utterly boring. Bed is more fun. Also can only eat really small amounts despite appetite. ANyone get that?
Like the sound of your bike zooooooom...!!!keep well, youre worth taking care of.
Life is good. xxxxxxx

2:23 pm, December 24, 2007  
Blogger Savy said...

Everyone has their views on how to cope up with the fact that you ARE having GS. I was diagnosed in 2003 with multiple mild jaundice attacks & unusual high level of bilirubin. I was flooded with advices of do's & dont's. And as a matter of fact, I was taken a back not knowing whats the best for me. I was strictly adviced to avoid - meat, alcohol & smoking. For more than a year, I turned veggy, became a teetotalar & anyways was a non-smoker. But eventually I realized that life was moving before my diagnosis too. I was atheletic with more than avg energetic life style. That no ways changed by the realization that I had GS. Today, I eat meat, drink (not a heavy drinker but on an avg 6-8 drinks a week, all kind of liquors)& lead a normal life. Twice in five years I had mild jaundice attacks but I dont relate them with my going back to ol' life style at all. So what if we guys have a few symptoms, but I think it is more psychological than clinical once we know that we have GS. As long as you exercise and maintain a healthy life style, no need to worry about or even remember that you have something monsterous - named GS :)

8:59 pm, April 18, 2008  
Anonymous Hangover kid said...

I was diagnosed with GS at the age of 14... jaundice really shits me off because everyone at school thinks i have fucking hep c or something. I have given up trying to explain it to the endless masses of morons. I get up in the morning feeling sick as a dog most days.. which has been the source of many embarrassing moments through school, feel lucky to have been diagnosed later in life rather than the (party) zone of it.

2:31 pm, January 11, 2012  
Anonymous Anonymous said...

It's clear that everyone'ssymptoms differ. Mine have included extreme intestinal cramping where I scream out at night ,just shoot me now. And the constant never ceasing nausea. Makes going to. restaurants difficult cause you don't know if you ll be able to eat what you ordered because of the smell. Vomitingin own mouth is not pretty!#@%&? Sleep overs all but forgotten. Ha life.

10:07 am, February 01, 2012  
Anonymous Atom said...

I know im late yo the party here, seeing as how im posting this a few years after the fact, but I want to weigh in as well. I was diagnosed with GS when I was in high school. I would be fine most days but the occasional few days would come when I felt like shit, actually today is one of those days but that's beside the point.
The doc says because its "harmless" there is no cure. I say fuck that. It interferes with my daily life and my job. If I ever become rich, I will gladly donate a huge chunk of it to finding a cure, although im pretty certain getting a liver transplant would fix it up nicely, but id rather be sure about it. Like u said, I hate having to explain to everyone about "my condition". It makes me sound like im diseased. I don't know, maybe im just pissed that my stomach is trying to forcibly reject todays meals, but I think these doctors should try it out before they label it "not dangerous". Sure its not dangerous to my heath, but it sure puts a damper on my social life and work ethic. I for one demand a cure.

7:56 am, February 18, 2012  

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