Blog, My experience of PKD

Staying focused on our goals despite illness

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Good news! As I promised myself at the beginning of July, I wrote the first 10,295 words of my novel project! 333 words minimum per day, for 31 days. I did this in the evenings, around 9pm, when the house was quiet and I only had to do that before I finished my day and finally went to bed.

Yay! I did it! 😀

We can agree, I am far from having finished my novel. I mostly got to know the characters, the environment and the story I want to tell. There are still holes in the narrative sequence, too. Other than a few dialogues here and there, I didn’t really write any of the words that will be in the novel. But I now have a story, with characters that I can’t wait to develop more.

For the rest, I will slowly find the holes in my story and make sure that everything will be coherent – and captivating, I hope! We’ll see, I’m very excited about the project!

Of course, I have little energy due to my end-stage kidney disease – but I also have a lot of time. I’m going to give you the best trick I have to force myself to move towards my goals anyway: the day counters.

The magical power of day counters

To motivate myself, I chose an external motivation: I signed up for NaNoWriMo’s July Challenge. I signed up, chose my goal (10,000 words), and all I had to do was write the words and add them daily on the site to earn badges.

For real, when I am given a counter counting how many days in a row I do something, it is such a winner for me! 😛 I can easily self-manipulate like that 😛

My first day counter experience

I started using this technique when I last ate meat 1780 days ago, so 4 years and 10 months ago. Initially, I wanted to stop eating meat for environmental reasons and for animal rights. But I love meat, and quitting was really hard for me. I had been trying to become a vegetarian for 2 years, but I was working full time and doing my master of Business Administration – also full-time. For lack of time, I sometimes bought fast food. At the time, the number of vegetarian options was pretty much non-existent, so I was sometimes having meals that included meat.

By starting a day counter on the day I had my last meal containing meat (McDo, for the record :P), I promised not to do it again. If I broke my sequence, I had to start my counter again. Thinking about putting the meter back to 0 after 30 days had a deterrent effect for me strong enough to never eat it again.

A winning formula

Same thing with Spanish. The Duolingo app allows me to learn Spanish and automatically adds a day to my counter of consecutive days when I practice Spanish for at least 5 minutes. I’m at 1042 days in a row, and I can now follow full TV shows in Spanish (with subtitles, it’s still the second fastest spoken language in the world, if I’m not mistaken!).

Basically, I found an almost infallible trick to motivate myself. It changes something I WANT to do into something I MUST and WANT to do. I just have to not put too many in place at the same time so as not to overuse my energy. It allows me to choose goals to prioritize, and to make sure I move them forward every day.

Now, I’m take a break from the novel for at least two weeks. I want to focus on the next stage of my fight for people suffering from Polycystic kidney disease (PKD).

September, an important month for our fight

Every year, September 4th is Awareness Day for my disease, Polycystic Kidney Disease (PKD). As I didlast April, I want to raise awareness about this disease and the fact that there is still no cure. We only have dialysis and transplantation as solutions, and they have consequences on our quality of life! We need money to fund research, and that means a better knowledge of the disease by the population.

On September 11th, I will attend thePKD Foundation of Canada‘s annual march in Montreal. We want to raise funds to find a cure for PKD. Walks like that one will happen all over Canada, and I would like to advertise it a little bit at the same time as I talk about the rest.

I am tired, but mobilizing the population is worth the result. So I’m going to push myself a little bit and start contacting the media.

My goals for August-September 2022

In April, I managed to reach a lot of media in my awareness campaign. I will first contact those who gave me a voice last time. I also want to try to expand my impact by reaching out to others. We’ll see if I can do it! The goal is to try! As I say all the time, being sick must be useful for something!

It remains for me to create a short pitch for them to send them by email, and to send them. Fingers crossed!

If you know a journalist who might be interested in my story, don’t hesitate to share it with them!

See you soon,

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