Friday, 23 October 2015

Inspirational speech...?

I'm trying to write a upbeat blurb for a CF research fundraiser fashion show that Dad is organizing tomorrow where I'm suppose to talk about living with CF. I've written enough of these that I should be able to pump out a little thing about living life to the fullest despite having a disability and always taking things one day at a time because you never know what will happen tomorrow.

However, all I can get out right now is how much having CF is terrible. It's an awful disease. It destroys your digestion system and lungs. On the digestive side, you take daily medication to simply digest food that has horrible side-effects causing cancer, diabetes, and osteoporosis. And even through a religious taking of the enzymes, sometimes the body rebels and makes you feel like someone is stabbing your gut with knives for a day or two as it refuses to digest food. You're constantly underweight, need supplements to help with weight gain as the body is often too tired to eat all the calories necessary.  Missing a meal can start a slide into malnutrition which can decrease lung function and body health in general.

On the respiratory side, you live in constant fear of infections and pneumonia. You do daily aerosol masks with breathing exercises and chest percussion in hopes to clear the lungs a little bit. You cough all the time. You feel asthmatic when transferring into air-conditioning or heating. You can't walk by stores that sell too many candles. Sometimes you throw up after exercising too much. As the years pass, it gets harder and harder to do aerobic activity. You keep pushing yourself as much as possible but know that no matter what you do, you'll never be as healthy as you were before.

There is no 'winning' with CF. There is no 'beating' CF. There is a long slow decline until you die.

Your parents know that it's expected that you'll die before them. Your siblings without CF know that one day they'll be an only child.

A lung transplant does help extend life and can make things wonderful but it's no guarantee. It's a huge process and if you live, it's not a 'do-over.' There is a 60% chance that you get another 5 years. 50% chance that you get another 10 years. It's something but the concerns are never over. There are new fears of infection and rejection. There are complications that I could've never imagined.

But all of that ranting and frustrating is not what I should say at a charity event. People want inspiration, they want to hear about living life to the fullest despite of the limitations of the disease. They want to be cheerleaders that it's possible to overcome. That their donation will help in a significant way.

Don't get me wrong, funding to the Canadian CF Foundation goes toward CF research for new medications, transplant research, and living adaptions. It has helped enormously increase lifespans, bring in new treatments, and help people with CF who've had transplants with care. It is important for people to donate.

It's just hard to say positive things about CF when having CF is terrible and I'm feeling less than inspirational. It's easy to praise the advances of research. Research has been amazing and has helped developed the new breakthrough of medication that is changing the DNA of certain people with CF who have a certain genetic mutation. I guess I'll have to pull up older blog posts from when I was in a more positive head space to not scare everyone in attendance.

1 comment:

NB said...

I think you have your speech already done, just from this "blurp" alone. I guess I sometimes get tired of everything being "sugar coated" - I think your way of telling things the way they truly are, straight from someone who has been through it, is the best inspiration for donations. Not everything has to be "upbeat". Hearing the truth of how devastating this disease is, would be, in my opinion, the biggest reason for people to donate so that further research will happen.