[Adult language and themes]
I’ve been trying to figure out what happens when I have bad days and feel like ending it. I wrote the camel story the other day because it described that it’s not the single straw but the load that breaks my back. My doctor once described CF as carrying a full bucket each day and it only takes one or two added drops to cause it to overflow. Overflowing is bad. That’s when I end up in the ER because I think I’m having a heart attack.
My thought process can be positive six days of the week and “bam,” day seven arrives and everything goes south in a hurry when a couple curve balls come my way. I realize I’m not thinking straight, but I feel trapped. And only one solution sounds reasonable as an escape. I know I’m screwed up, but I can’t do anything about it.
Here’s a sample from the other day.
Blood streaks. Fuck me. Not good. Where will this lead? Hospital? No. I don’t want to go in again. I can’t go in again. I can’t do it. I can’t take another trip there. I have a ton of work right now and important deadlines to meet. I don’t want to talk to HR again or call my bosses and explain.
I should end it.
I have to fly to New Jersey at the end of March. I haven’t flown in almost a year. When I walk through the airport, I’ll be carrying heavy bags and exerting. Exertion equals blood. I don’t want to cough up blood in the terminal. I don’t want to cough up blood on an airplane again. What hospital will I go to in New Jersey? I can’t spend two weeks there on IVs. What if I need another embolization?
I should put an end to all of this.
An email saying I have to go to Detroit for training later this year. De-fucking-troit. No. Another plane trip. I can’t fly. I don’t know that city or anyone in it. What if I cough up blood there and have to go to the hospital? Two weeks in Detroit. I don’t want to go on that trip. How can I get out of it? How many special favors do I require at work compared to every one else. Fuck CF.
I’m not sure it’s worth going on.
I have a growth near my ass. How funny is that. I won’t mention this on my blog. Too embarrassing. Great. What doctor do I see about this? I’ll start with the skin doctor. Seems like a fatty tissue. Gross. I think it’s been there awhile. It it was cancer, I’d be dead by now wouldn’t I? Have it checked out. I hope it’s not serious, but I’ll ask the nurse to leave the room when the doctor looks at it. I’ll have to put one leg up on the chair. Embarrassing.
I can’t do this anymore.
My wife is going on a business trip for three days. I told her to go, but I wish she wasn’t. I have to take care of our daughter. That’s a lot of work. How will I do it? It’s the week before my deadlines. What if I cough up blood while my wife is gone? How fast can she fly back? Who will my daughter stay with? Probably one of our friends. How many days could I make it coughing up blood and not going in? The hair brushing and homework and all the stuff my wife does. I don’t know if I can do it.
I should just end it now. That’s the best solution. I can’t do all of this. I just can’t do it anymore. I’m embarrassed. It’s just not worth it anymore. I don’t want to fail.
So, that’s how it goes. At the time it happens, it’s serious, a wave that comes over me as the load becomes too heavy to carry. And I can’t break away from the thought process. It is a feeling of being trapped, and I have to escape. Then, later that day, I feel okay. Sometimes it takes a Xanax or two. And it’s ironic because every other day I’m worried about losing my life. This, however, I do know: It’s hard to be this screwed up and know you are.
The Unknown Cystic 
I love your honesty in this post, John. I’ve certainly had thoughts like this creep in from time to time. You are carrying such a huge load all the time. Life gets overwhelming. I’m glad that these are fleeting moments and that you realize that the thoughts will pass. Sending you lots of love from Ohio (which isn’t too far from De-fucking-troit)…
Stacey,
Your comment cracked me up this morning. Thanks for that. It is strange how some days the CF stuff just overwhelms me.
John
Couple of things – First, your from California right – have you tried meditation? – read up on “monkey mind” (you definitely have it!) read up about meditating and “calming breaths” even if you only do it 10 minutes a day I guarantee you you’ll have gained needed tools to keep you calm (without the Xanax even :). Even though I don’t practice yoga (at least not recently)- I signed up for the magazine Yoga Journal it has GREAT info in there for easy living. Second, as for your trip to Jersey – can’t you call the airport and have someone meet you with the little car I always see buzzing through the airport? Be smart – put them to work for you. Also, check with the local high school – I bet you could find a teenage boy volunteer who would be willing to drive you to the airport and carry your bags up to where you check them and pick you up when you get back. We do that now with my nephew and it works great. Third, you got to learn when your brain starts going down that dark path to stop your brain, make a conscious effort (and I try to actually visualize it in my head) to go down the other path where you think of every single thing you can think of that you are grateful for! Don’t stop repeating what you are thankful for until you get yourself out of that dark place…Gratitude, Gratitude, Gratitude. Fourth, do whatever you can to get out of the trip to Detroit! Yuck… Fifth, as your friend in Philly – worst case scenario we got great hospitals here and if you gotta go – hit up the blog and I’m sure you’ll get some great visitors to come see! Keep on writing – I look forward to your posts everyday. And as my Dad always says – “put a smile on that pretty face!” Your Philly Friend, Lisa G
Lisa G,
I like having a Philly friend. Nice. Monkey mind? I’m almost afraid to look it up. I like your suggestion about meditation. I read about transcendental meditation a few times and was too cheap to take the classes. They look pretty cool. I’m not a yoga guy though. If it had tools or rackets or BB guns to make it more interesting I’d do it.
Re: bleeding on the plane, yeah, I guess I could call the guy, but with CF I don’t look like there’s much wrong with me and that’s embarrassing and you can’t have the car drive you everywhere. I just don’t want to cough up blood. I have to play out all the scenarios in my mind, asking them to take my bag off the plane, coughing up blood on the plane, which has happened to me before and is a real drag.
I can’t stop my brain from thinking a certain way. That’s the problem. It goes down that path and it sounds and feels like the solution.
I’ll get a list of NJ hospitals before I go. That way if something happens on the plane, I can go right to the hospital.
I have a lot of gratitude for you and your stopping by and leaving a comment. Thank you.
UC
I know exactly how you feel. The wave of panic comes over without warning, when one more bit of straw is added to the pile. I was JUST thinking about this yesterday, when I was trying to figure out what to do about my sinus surgery.
And, I COMPLETELY understand the travel thing. The only place I’ve taken a plane to this past year is SF, for doctor appointments. We simply have too much “baggage” (in the literal and figurative sense of the word) to make traveling worthwhile. I know it can be done, I know stronger CFers than me do it all the time, but it brings too much anxiety for me to be worth it.
I’m so sorry John. Last time you went through a rough patch, I asked if there is someone that can share the load with you. But the truth is, it’s as much of an emotional burden as a physical one. I’ve been having more and more of these panics wash over me, and I’m noticing that the path of least resistance is to just let them be and then let them end on their own, usually one days worth. I usually end up yelling at someone I love in the meantime- this is one of the casualties. Maybe you can install one of those rocky balboa punching bags somewhere in your house and beat the fuckin shit out of it? I’ll join you.
Lizi,
Yes, panic comes without warning. I can’t believe when it comes sometimes. What’s up with your sinuses? Did I miss that on your blog? I agree with you on the travel. I used to love to fly places. Now, I’d rather not. It’s such a hassle to fly and they search all of my drugs – in front of the world. Out come the nebulizers to be swabbed. It’s just not fun anymore.
I’m been doing okay with the attacks. I think I”m managing them better and understanding that I’m not having a heart attack each time. That’s helpful and I recently got a heart doctor close by. That will also help. Instead of the Rocky punching bag, let’s design one with the face of CF on it. I’ll be happy to kick the shit out of it with you.
UC
I realize that you don’t really know me, but I am in the valley and I’d be privileged to help if you need it. Last year my load felt far too great and I considered my “options.” I too get really, really dark. I think that’s why I like your blog so much! A friend did something as simple as bringing my family a meal one night and it helped so much as I felt less alone on a really bad night. I still have all the same problems this year and somehow it’s better. Besides, as a mother of a daughter with CF, I have to figure out how to make it whether I want to or not. Like I said, I’m in the valley and happy to help if you need something.
Margie,
You’re a valley girl? I did not know that. Are you the one driving around with the “Cure CF” plate on her car? I hope you are because I’m dying to track that person down. It’s very kind of you to offer your help. I’m touched that you would make an offer like that. Thank you. I’ll tell you this – it helps to know you’re around in the area. You have your own hands full. If there is anything I can do for you, please let me know. unknowncystic@gmail.com. That would be better.
UC
I’m not the one with the “Cure CF” plate but I wish I was! I have not seen it. I’ll be on the lookout.
Best,
Margie
I have seen the car twice in the valley and have not been able to catch it. One day.
I feel for you. Do not apologize. Please don’t take this the wrong way. But I KNOW how stressful work can be. I used to be a project manager of software development. Everything due yesterday. Many employees to manage in and out of state. I was. Workaholic. It took 10 years for me to realize that my health is more important. My son and husband NEED me. It was a VERY hard decision. But I had to leave my very good paying job. Things are tougher w money. But. My priorities are where they should be… health and family. I still have my moments, you can see that from my blog. But… I always have the time needed to focus on my health. Just wanted to share.
Ginger, Is that the name we came up with? Working with CF can be a bear, but I’m lucky I have a job and can pay the bills. But some days overwhelm me. It always feels like I’m hanging on the edge of losing it. And working when you don’t feel well, well, you know. And it’s a good paying job – with health insurance. There’s a lot of pressure on me to keep it. I read your recent post and have been trying to think of the words for a decent comment to leave.
Thanks for the understanding.
UC
Just wanted to say thanks for being honest.
I have thoughts like this as well, and they’re not the same as “oh, I hate my life, I can’t take it anymore”; it’s when I get freaked out about a possible future scenario, and try to mentally prepare by walking myself through the worst-case scenarios and how I would handle them, follow that little path of deductive logic, and then oh! surprise! find myself standing on the “it’d be easier on people/most efficient/fairest if you just died”. I’m as shocked in my own brain when it happens as a stranger would be if I was saying it all aloud.
The problem with our specific brand of monkey mind (and we do have it, my friend, haha) is that “normal” abnormally anxious people have panic attacks about really random things that aren’t particularly any more likely to happen to them than to anyone else (heart attack, healthy in mid-20’s; getting hit by a train, plane crashes, etc).
I think one of the most helpful things – or at least, most validating things – anyone ever told me was a shrink of all people, who explained all of that to me, and then said, “but your anxiety is, quite frankly, a perfectly appropriate and expected reaction to the much higher probability of a large number of things happening to you, whether now or in 20 years, that can be extremely painful, emotionally taxing, and are almost completely beyond your control. The key is to find a way to minimize your reaction to these thoughts and fears, and find a way to function and live happily alongside them, without denying their reality.” Still searching for that key 🙂 but just knowing I wasn’t a debbie downer, or paranoid, or crazy for thinking about certain things made me feel a lot less anxious, ironically.
Hang in there. And keep blogging it out, man, hahaha.
Love, broccoli and mcgriddles to you –
Jessica
Jessica,
First, I’m happy to see you blogging again. I thought you’d given it up for a life of fun and relaxation.
I have to investigate the monkey mind concept that’s being tossed around here. Not really sure if I should be happy to have one or not.
Your comment is excellent. I especially like the idea of probability. I had never thought of anxiety in that way. Makes sense. Yes, the chances of me blowing blood are greater than the normal bear’s. And yes, that does lead to my anxiety. I have to take it into account for everything I do. Can I just live in the hospital?
Thanks for the help. See you on your site.
UC
holy crap that was longer than I thought. Sorry dude.
UC,
I have no answers except to offer you a cyber-hug. And your comment about de-f’ing-troit made me laugh out loud.
I’m so sorry the load is so damn heavy…it’s never fair. But it IS fair of you to share your thoughts and fears, not matter how lucky we know we technically are to be having these issues in our 30s with CF, because hey, you coulda been dead at 20. And then your wife and daughter wouldn’t have you and all these amazing memories and years together. I can speak from the wife side and say that it would most definitely NOT be easier if you were gone… every day, no matter how difficult, is still a day alive. Sending you peaceful things.
Liz
CF wife
p.s. I think I may have to research this monkey mind jibber-jabber too… sounds like something I might have. Or Chris might have. 😉
Liz,
Cyber hugs are good. I’ll take it. That comment about Detroit was my thought when I saw the email.
Your points are excellent. And I’m glad I’ve never acted on the impulses. Despite everything CF related, the rest has been pretty good. I would have hated to have missed it.
I looked at the monkey mind thing and got upset, mildly. I’ll check it out again. It’s probably true about me.
Best to you,
UC
UC,
You’ve gotten a lot of really wonderful tips here. It should help your shoulders drop a notch knowing we relate, and care. (Me, stressed? My massage therapist used to pry my shoulders down from the top of my neck scolding, “These are NOT earrings!”)
Rent a cart in the airport for your bags. If anyone gives you funny looks, tell them your dumbbells are inside. OR, and I swear I had this idea first, about 15 years ago: you can now ship your luggage ahead to your hotel! UPS and FedEx, I guess. It costs $$ but if I were still having to travel on business, I’d do it in a heartbeat.
Lastly, tell HR that flying is hard on you. Teleconference, my man! Don’t take unnecessary risks. This from the old CF lady in your midst. 🙂
MAL,
I got great tips, didn’t I? More proof that I’m the luckiest guy in the world. There are good people on this planet.
I may ship my luggage. The problem is I have to follow it after that. 🙂 I may skip the Detroit trip. NJ, I have to go.
Always nice to hear from you. When are you going to write a guest post?
UC
I had a massive public panic attack the first time I tried to take J out socially. Tucked carefully in his wrap, hidden from almost everyone but me, we went to have dinner on a patio with some friends, only it was about 5x busier than we had anticipated. I became convinced I could see the bacteria on people and that it was ‘going to get my baby’. I was also aware of how illogical my thoughts were.
I still get panic attacks. For me it’s mostly because it’s not me. This beast that controls so much of my existence isn’t mine. I’m a 3rd party. It’s my BABY that has CF, and right now, I control all of his treatments and his care and I know I can do everything possible to keep him healthy. But I know I will have to give up that control as he grows up and that scares the living shit out of me.
I do recommend the yoga/meditation side of things. But to be honest I recommend it in conjunction with the xanax.
Amy,
I feel for you about the bacteria. It has to be tough for a parent of a 1 YO (my buddy, Baby McGriddle). How do you keep kids from touching everything? And some of the stuff they touch is good for them and builds up immunity. Do you doctors or other parents have suggestions?
Re: the panic attacks, I am in a similar boat. I don’t know how to stop them. I’m not Mr. Yoga. If it had a gun with it and I shot clay pigeons I could dig it. Xanax is my pal.
UC