Going to sleep isn’t as easy as it used to be, but neither is waking up for that matter. Living with Cystic Fibrosis is a hard road, and sometimes I feel like taking an off ramp, but I’m determined to make it and live a normal life.
There are rules to this game, strict rules and it is in your best interest to follow them, or CYSTIC FIBROSIS might turn a bit scary.
1. Always, always stay positive, and keep your head in the game. Trust me, I know this is not easy, but you’ve got to. If you let your guard down, you get sick, and then your sidelined for a while.
2. Don’t let CF run your life. Be normal, do normal things and don’t sit around and mope, waiting for the animal to attack.
3. Don’t be afraid of being afraid, because it is scary and dark sometimes. Let your feelings out. Suppressing them does us no good, which leads to rule #4.
4. Find someone to talk to, for me it is my partner in life, my wife, the Dale Evans to my Roy Rogers, the Minnie to my Mickey, the Lois Lane to my, well you get the picture.
5. Listen to your doctor and make sure you understand what is going on. This is very important as you get older.
6. Be able to make the best of any situation. I just got a port, I’m not getting stuck with anymore scary nurses trying to find a vein to shove a pic line in.
7. Never suppress your cough. That one is for you Dr. C.
8. Always remember your enzymes, because if you don’t your wife might make you sleep outside.
9. Always tape your feeding tube to your button, because if it comes loose in the night you will have the stickiest mess since the Exxon-Valdez.
10. The last couple of rules were a bit on the lighter side, but seriously stay strong, positive, and never let them see you sweat.
These are the rules of the game. Follow them at your own risk. They work for me. I’m looking forward to my 30’s.
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