Tuesday, 26 August 2014

An explanation of how it sometimes feels to have CF.

I spent the evening tonight talking with Amy on the phone about the shittyness of CF. Well, I more listened while she ranted. She had a check up appointment today that didn't go as well as hoped. And there is nothing more discouraging than going into an appointment feeling fine only to be told that your lungs are actually worse despite all your healthy eating, exercising, and never skipping an aerosol mask. It's beyond frustrating. The worst part is when no one can tell you why you’re lungs are crapping out. You wish you had pneumonia because at least then you could point and say ‘that is the reason my lungs are worse.’ Then you feel weird about wishing you had pneumonia.  

The trying so hard and experiencing failure makes everything seem pointless. What’s the point in exercising when it doesn’t seem to be helping your lungs anyway? Why should you spend two hours each day on four aerosol masks when it doesn’t help? That is the thing with having CF, there are never any victories. Never a moment to say "yes, I’ve worked hard and put all my energy into treatment and self-care and now the disease will not bother me again."

It doesn’t happen. There is never a break. It can wear anyone down. You sometimes get angry at people who say ‘hope you get better soon’ (then immediately feel bad because they were just being nice) because you know while you may recover from a certain infection, you will never be able to recover to where you were 5 years or a year ago.

To put it intp the battle terms that everyone loves so much: You never get to beat or fight off the disease. You only experience losses until you have nothing left to lose. You never get a win. You might sometimes gain back some lost ground but it will never last forever. There is never a chance that it will one day it will be defeated and you’ll come out the victor on the other side*.

I'm not sure if people without CF or a debilitating disease would ever have a similar experience. Sure, everyone has disappointment and goals that they fail to accomplish. But have that happen over and over again and it's a bit like having CF. I wish I had a brilliant metaphor but the only thing I can think of is that it’s like standing at the top of a descending escalator, not wanting to go down. So you keep climbing the steps but it's moving too fast for you to make any progress. You try as hard as you can but you never make any gain. And then you try to sprint up it but you can’t keep that speed for very long and then you end up losing ground because you have no more energy. Or you stop for one second and suddenly you're lung function has dropped 10%....okay, maybe I'm bad with metaphors. I think you get the idea.

It just. never. stops.

The feeling of hopelessness can be unbelievably overwhelming. So overwhelming that it's sometimes hard to shake off or crawl out from underneath. It takes time to recover from a decline and there are only so many times you can put on a positive smile in the face of horrible news. You crawl out of it and shake it off, but it’s damn hard sometimes. Eventually you reach a point of acceptance that it’s out of your control. That it will happen despite your best efforts. And while you may not be able to ‘win’, you can sure as hell delay the loss for as long as possible.  

….I think that's the end of my rant. I've probably already posted one like this before but after talking to Amy, I needed to rant again. Because it's hard. If you didn't already realize it, having CF sucks.

 
*I just wanted to add as an aside, that while having a lung transplant may rid my lungs of CF and may seem like I have 'defeated CF', I still have the disease in the rest of my body. Also, transplants are hard and avoiding rejection is it’s own never ending process with little or no reward. Getting a lung transplant is just replacing the inevitable doom of CF to the-just-as-cheery-inevitable doom of organ rejection. It’s not a victory so much as trading one thing that will almost-definitely kill you right now with something that will almost-definitely kill you in the future.

5 comments:

Amy Watson said...

Yes, a hundred times yes!

Helen said...

I love you two. Thanks for ranting.

Faith said...

I just want to kick CF in its stupid face.

(...er, if I could do it without actually kicking someone *with* CF, as I imagine that's a bit counter-productive...)

Amy Watson said...

Bahahha. I choose Alley you kick in the face.

Alley said...

Hahaha thanks Amy, I can feel the sisterly love.