Yahoo Answers Post – Pretend you are writing a
question about your condition – it can be as silly or
humorous as you want. Now answer it.
(Remember: Your answer can be just as silly)
So I wasn’t familiar with Yahoo Answers. I’ve had a look, and I don’t think I’ll be a regular visitor.
It seems to be one of the places you can get some really bad information. There is loads of really bad information about IBD out there – people suggesting cures (there is no cure) or insisting that a diet can relive all your symptoms (some people have some success some of the time – but it is not universal).
I don’t have the energy tonight to create humourous answers to a false question I’m afraid – but always consult your medical team and don’t really on the wisdom of the internet!
So, you’ve just been told you’ve got ulcerative colitis – so at least that drink that turned your bowels into Niagara Falls wasn’t for nothing. You’ve got your twice daily suppositories and your going home, and you’re not going to think about it much. It’s 2005 and you don’t routinely Google everything you’ve never heard of.
You should. You should find out about this disease, because in 3 months time it is going to hit you hard. You don’t know right now how serious it can be, and whilst nothing can prepare you for the double-digit toilet trips, stomach cramps and complete lack of energy you are going to have, it might be better to know that having your colon out is even a possibility. So do that, look into it.
The other thing you need to appreciate is what it means to have a chronic illness. For life. Incurable. And for you there are going to be long periods when you are ill. Can’t work. Can’t walk. Shit all over you and your bed. And *Spoiler Alert* your wife.
You are going to have toxic drugs pumped into your system. Experience Tramadol dreams and morphine itch. You will take drugs to combat side effects of the drugs you are taking to prevent side effects of your drugs. You will marvel at the commitment of doctors and nurses and others who work in hospitals. You will curse doctors and nurses and people who run hospitals.
If that sounds a bit bleak – well at times it will be. However, you will also live a life. You will achieve things. You’ll find a career for yourself, go back to university. You’ll move house and start a family. And you’ll tell your story and be surprised that people want to hear it.
Take notes – it will make it easier later.
Remember there is no point in not telling the doctors how bad things are when they are bad.
So that is my advice from 11 and a half years down the line. I’ll see you when you get here.
‘I ATE’NT DEAD’
This quote – which I suppose is more of an inscription comes from The Discworld series of books by the late Sir Terry Pratchett. I recommend them to you.
Specifically, these words are used by Granny Weatherwax on a sign when she is ‘borrowing ‘- sending her mind into that of an animal – leaving her body lifeless and so as to avoid any unfortunate funerals.
I was already a fan of the Discworld novels when I had my first hospital admission for ulcerative colitis and my friend made a sign to hang on my hospital bed stating quite clearly that ‘I ATE’NT DEAD’.
For those who don’t know – on this visit I nearly was dead. It still feels weird to say it. My colon was so distended it was close to bursting, and after the operation to remove it I developed septicaemia and needed a further operation.
And so when things are tough it is that quote that I think about. I’m still here, fighting, living.
My writing is pretty sporadic. One of the weird things about blogging about your health is that when you are ill and have interesting stuff to write about – you might well not be up to doing it. When you are well and could write – you don’t have much interesting stuff to say!
I am definitely a when I get inspiration style writer (rather than having time each week for example) and if a post has really captured my imagination I tend to just bash it out and publish – if I don’t get it done it tends to stay in drafts (I’ve got one post I am really struggling to finish at the moment!)
I like to include links in my posts to direct readers to information or resources they might find useful, and that sometimes takes time. I’m also trying to get better at adding photos to my posts, just to liven them up a bit!
Let me know which of my posts you’ve enjoyed by commenting below, or what you’d like more of!
To try to boost my blog content I’ve decided to take part in the Health Activist Writing Month Challenge. This is a daily writing challenge with prompts from the lovely people at WEGO Health who are running the awards I’m nominated in – and a big thank you to all of you who endorsed my nomination, the finalists are announced in December.
So today is about introductions – let’s get to know each other! What drives you to
write about your health? What do you want other
Health Activists to know about your condition and
I’m Richard, 35 and I have ulcerative colitis, a form of inflammatory bowel disease.
I write started writing about my health as a way of dealing with what was happening for myself, and then as I approached surgery to form a new stoma wanted to share that journey. I had the surgery and have kept writing to try to raise awareness of inflammatory bowel disease and living with an ileostomy.
My activism is mostly online – although I did a year as the coordinator of my local Crohn’s & Colitis UK group – and you can find me contributing to various Facebook groups and forums. I also started #IBDHour – a Twitter hour for IBD chat in September 2016.
I’m hoping (work and daddy commitments allowing) to write a book bringing together my blog posts and some new writing and ultimately I’d like to create a spoken word show about my experiences.
So, that’s me – enjoy the next thirty days of writing, and do get in touch if you have any questions!