I’ve been thinking about how I’ve betrayed you, dear reader*, over the past few weeks. I’ve let you down. Instead of talking about side effects, treatment protocols, trial data, drugs, more drugs and yet more drugs, I’ve talked about philosophy. Ethics. Guilt. Trips to the orchestra. Going to pony club.
“Where’s the Hepatitis in all that?!” I hear you say. “Where’s the Useful Information? Where’s the Advice? I come here for information about Viekira Pak and you give me advice on packing the car badly for a night away. Who do you think you are? Fraud! Shyster!”
The trouble is, right now I don’t have much specific useful hepatitis C information to share. That’s because for this brief and shining moment I’ve managed to achieve a sort of homeostasis. I’m in between blood tests, so I have nothing to agonise over. My side effects are generally manageable. I’ve worked out how much I can work and stay sane(ish).
I can share how to do things badly though. Generally my learning curve is prolonged, steep and filled with potholes. Want to know the wrong way to do something? I can show you that.
How not to handle work:
Ignore all advice from work colleagues, friends and family that you are trying to do too much. Wait till things come to a head - more than once - and you find yourself sobbing uncontrollably at the smallest of problems. Or rocking in the corner instead of taking a phone call.
How not to handle your friends:
Isolate yourself from them. Or even better, go visit them every day more than once and take your blood test result sheets with you so you can show them that weird haemoglobin result you were telling them about.
How not to be a caring family member:
Take out all your frustration on your family. Don’t just stop at your partner or your kids, have a real go. Don’t forget your parents. Or your siblings. How about that cousin you haven’t seen in 10 years? Why not ring him at 9:30pm at night.
How not to manage side effects:
When you are racked by headaches, you can scarcely sleep with insomnia, you itch every minute of every hour of every day, when you have so much bilirubin in your system that you look like a minion from Despicable Me and your doctor asks you how you’ve been feeling, answer “Fine!”. Or “Great!”
How not to communicate with your medical team:
Not at all. Or three emails a day, every day for months, preferably detailing side effects and intimate graphic details of your last visit to the bathroom. Or in Urdu (unless you are in Hindustan).
How not to manage feeling a little sad:
Wallow. A lot. For weeks. Only get out of bed for important things. Like Eurovision (YAY EUROVISION!!!).
How to make yourself the Patient That Everyone Dreads:
Take your pills at different times every day, skip tablets, be late for appointments, better still don’t turn up for appointments, skip blood tests, ignore medical advice, abuse the medical staff that are trying to help you**.
So, like me, you can be a terrible warning, or perhaps, just perhaps ... you could make the right choice and be a good example.
And don’t forget, EUROVISION IS ON ALL WEEKEND!
Just to get you warmed up, here’s a shot from my favourite act of 2011 - Moldova’s Zdob si Zdub. No I have no idea what’s going on either, but that’s the great thing about Eurovision. You just let it wash over you like a tsunami of glitter, crazy stunts and wind machines
* I’ve always wanted to use the term “dear reader”. It seems delightfully Jane Austen-y. And now I can cross that off my bucket list. Another life accomplishment achieved!
** I would never do this, it is Artistic License for the sake of Humour. I’m taking the fifth on the rest of the post though.
Ignore all advice from work colleagues, friends and family that you are trying to do too much. Wait till things come to a head - more than once - and you find yourself sobbing uncontrollably at the smallest of problems. Or rocking in the corner instead of taking a phone call.
How not to handle your friends:
Isolate yourself from them. Or even better, go visit them every day more than once and take your blood test result sheets with you so you can show them that weird haemoglobin result you were telling them about.
How not to be a caring family member:
Take out all your frustration on your family. Don’t just stop at your partner or your kids, have a real go. Don’t forget your parents. Or your siblings. How about that cousin you haven’t seen in 10 years? Why not ring him at 9:30pm at night.
How not to manage side effects:
When you are racked by headaches, you can scarcely sleep with insomnia, you itch every minute of every hour of every day, when you have so much bilirubin in your system that you look like a minion from Despicable Me and your doctor asks you how you’ve been feeling, answer “Fine!”. Or “Great!”
How not to communicate with your medical team:
Not at all. Or three emails a day, every day for months, preferably detailing side effects and intimate graphic details of your last visit to the bathroom. Or in Urdu (unless you are in Hindustan).
How not to manage feeling a little sad:
Wallow. A lot. For weeks. Only get out of bed for important things. Like Eurovision (YAY EUROVISION!!!).
How to make yourself the Patient That Everyone Dreads:
Take your pills at different times every day, skip tablets, be late for appointments, better still don’t turn up for appointments, skip blood tests, ignore medical advice, abuse the medical staff that are trying to help you**.
So, like me, you can be a terrible warning, or perhaps, just perhaps ... you could make the right choice and be a good example.
And don’t forget, EUROVISION IS ON ALL WEEKEND!
Just to get you warmed up, here’s a shot from my favourite act of 2011 - Moldova’s Zdob si Zdub. No I have no idea what’s going on either, but that’s the great thing about Eurovision. You just let it wash over you like a tsunami of glitter, crazy stunts and wind machines
* I’ve always wanted to use the term “dear reader”. It seems delightfully Jane Austen-y. And now I can cross that off my bucket list. Another life accomplishment achieved!
** I would never do this, it is Artistic License for the sake of Humour. I’m taking the fifth on the rest of the post though.
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