Everyone ELSE is asleep. The good shows have long finished. The sports teams have all finished their games. There I sit still doing my treatments and cleaning all of my equipment. I still have tons of voicemails, texts and e-mails to answer but I can't seem to get myself to answer them. My anxiety is still running rampant and my exhaustion is at its highest point. I'm depressed. I hate CF...and right now, quite honestly I hate the way I feel!
This has been a tough 4 weeks. It started out when I got food poisoning and threw up about ten times one night early in the month. A week later, my son was in a baseball tournament and we were rear ended on a highway ramp in Atlanta on our way to the tournament. The other car was totaled. Fortunately neither Ethan nor I was hurt. Of course the insured did not have enough coverage so I had to file under my insurance and the two insurance companies have been fighting ever since and are finally closing in on an agreement though I feel like I've had to do a majority of the work dealing with phone call after phone call. In the meantime, my car will be in the shop another 6 weeks. Then of course most importantly I got the news that my lung function was down again and so we agreed to be aggressive and added a steroid, an inhaled sinus aerosol, three more oral antibiotics and TOBI (an aerosol antibiotic). It's been a bit overwhelming to say the least but I wanted to be in the best shape possible to enjoy the summer with my family. The funny thing is that in this timeframe, good things have happened too like Ethan getting his first medals in a baseball tournament, having an amazing Father's Day with my wife and children and getting to have lunch with my sister. The problem with anxiety and depression is that I really have to dig deep to remember these moments as the bad moments are stuck in the front of my mind.
Initially my PFT's went up a lot on all of the meds and then they went down a bit and then I blew so hard that I probably pulled something and bled a little during my last PFT a week ago. I have decided to give myself a few weeks off of PFT's to heal. The Peachtree (10k race), which I have run for 20 consecutive years, is only 4 days away and I intend to run it again. I have been training this week hardcore. I ran 4.5 miles on Monday, Tuesday and Thursday at a 10 to 11 minute per mile pace but most importantly only coughing an average of once every 10 minutes. That's key! I can still tell my breathing is a bit impaired and I'm more tired than usual. Some of that is the medicine of course.
The hardest thing right now is mentally I'm cooked. Just to give you an example, I wake up around 6:30 to start my antibiotics and don't finish all of my treatments for the morning until 10am which is when I work out for 90 minutes (including my run). Then I do my Tobi. Then after a 45 minute break, I do my afternoon treatments. At night, I have been starting my treatments at 10 P.M. and not finishing until 1 A.M. or sometimes as late as 2 A.M. Yikes!
That's when the loneliness and the anxiety set in. When no one else in the free world seems to be awake but me, I just hate sitting in the dark alone while steam flows out of my nebulizer. And I feel horrible that most nights I leave my family alone to go to sleep while I do my stuff. Yeah, the dogs stay down with me but they're not great conversationalists. Let's face it though; I'm not either right now. I don't want to talk to anyone. I talk enough to the most dangerous person I know...me! I will say that I have now watched Jaws and Jaws 2 more times than Spielberg himself.
My strength
Thank goodness for Andrea. She is so strong. She listens and she is not afraid to light a fire under my butt if I'm letting anxiety, depression and CF win. I honestly don't know what I'd do without her. I once heard that you're only as strong as your significant other. Well then, call me Hercules!
When I went off of Prednisone a week ago, I didn't wean off. In hindsight, I probably should have. My anxiety was crazy and it hasn't gone down much. I'm constantly pacing and worrying. I'm probably driving my family crazy which is not intentional. I have closed myself off to the outside world which I really started doing more than six months ago. I don't know what started it. I've been so into writing the CF Warrior Project that it's become less of a passion and more of a quest. Sometimes it's hard writing about people who are really struggling but it's awesome at the same time seeing the resolve that they fight with and the accomplishments that they achieve.
Summer and social media just don't seem to mesh for me. When you're sicker than normal and you see everyone (when you're depressed you see a skewed view of the world) laughing and going about their wonderful lives in exotic places (though we all know that Facebook is never that accurate), envy creeps in as much as you would not want to admit it. It's as if life goes on and I have to deal with my own crap which it does and I do. It's tough especially when you know that people think you're Superman. I've probably created that façade. I'm not Superman. I'm much closer to Clark Kent. The work I put in is worthy of the Man of Steel but the fears I deal with and the sadness I have trouble conquering don't put me in the same ballpark as the son of Jor-El.
Here is the positive news. Other than a little tightness which could very well be a combination of all the meds and my anxiety, I'm doing pretty well. I'm running with barely a cough. My weight is stable. My appetite is normal. I'm working out like a beast. I even played a softball double-header the other day. I can still tell I'm not 100 percent but I'm edging closer. I wish I could just snap my fingers and be the old me again but that's not how CF works. That's not how anxiety and depression work either unfortunately.
I know that there are other people with CF who are far worse. There are people with other diseases who are fighting tougher odds. Still this isn't all about me. It was easier when it was. Now I fight to stay healthy for my wife and kids. I fight to get healthy so I don't miss a trip, or a celebration, or even just a simple moment in time. That's a lot of pressure that I unduly put on myself. That's pressure that Andrea doesn't want me to put on myself. My therapist told me Wednesday that I put far too much pressure on myself and then he said to make sure to send him his check in time (hey, that doesn't help. Ha Ha!). My doctor once told me "You can't be Superman all the time!" So right now, I'm focusing on being Clark Kent and being okay with that.
I have shed tears more over the last month than I think I have over the last 5 years combined. I cry watching stories on the news about people suffering. I cry when I see a movie I haven't seen in years. I cry when I just talk. It's awful. I can't define my efforts, my personality, my love for life, my accomplishments on one PFT number or just feeling a little crummy. It's not healthy and quite honestly it's not helping.
I want to make a comeback from this. I really do. I know in my heart that things will be okay. I just have to snap out of this funk. I have been writing some comedy material lately and it makes me laugh. I will start reaching out to more of my friends soon. I'm sorry I haven't been myself in some time. I miss all of you but I especially miss me.
The good thing about bad times is surviving them and subsequently appreciating the good times. The tough thing about bad times is missing out on some stuff and falling behind on others. Time is just not something I have a lot of right now. I figure I spend nearly 6 hours a day on meds, 7 hours on sleeping and 2 hours on eating. I want the rest of that time for my family but I need to divvy some of it out to my friends.
I intend to get better whether it's tomorrow or 6 months from now. The journey is never easy but the destination is always worth it.
Thank you for listening.
Live your dreams and love your life. It's time I follow my own advice.
Andy
Soon!
