Existential Crisis

ethan508

New member
Not a crisis per se, but I sometimes have triggers that put me into "CF is going to get me" anxiety mode. I've been in CF freak-out mode for the last week or so. This was triggered when my older brother went in for a clean out coupled with me getting mild flu and sinus infection.

In general my CF disease has been mild enough that I can hide it from co-workers and friends. But I get nervous about the day when that isn't possible (hospitalizations, lower activity tolerance, etc.) and my lifestyle will have to slow down or be more CF-centric (not that I already deal with it daily). Also sometimes I just get down about my lot it life in general.

So what do you fellow CFer do to get out of the funk? Exercise seems to help me in general, but during infection that doesn't seem as wise/appealing. Any other methods? Maybe I should hit the yoga mat.
 
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welshwitch

Guest
Hey, I've been there. Going to a therapist really helped. She gave me some good books to read, stress reducing techniques, etc. I also did a phone call with an older CF adult in her 50's who is doing great and had good advice. The big takeaway from that experience was, "Why worry about something that hasn't happened yet?" I realized I was spending all of my time and energy worrying, when I was (and still am) young and healthy. Reading the CF sad stories really brought me down, so taking a break from all that helped. Realizing that I am writing my own story, different than those with the same disease. Not living in denial, but also not letting it take over my life. I also like to think of it like -- let CF have a place at the table, but don't let it bully you out of living your life and enjoying. You don't know what is around the corner.
 

azdesertrat

New member
At my advanced stage of CF, I've made up my mind that CF or something stemming from CF is going to kill me.
It's that simple. I don't let it get to me.
If CF isn't going to get me, something else will. It just doesn't matter.
All you can do is keep yourself as healthy as you possibly can.
Do what your Dr's tell you & take care of yourself. That way, you can put it off as long as possible.
I'm 50 yrs. old. I've had to be hospitalized 4 times since just before Thanksgiving.
Oh well...
I just aint gonna let it get to me. I feel pretty good today & that's what matters.
Best of luck to you & yours, 'Pat'.
 

ladybird

New member
CF can be depressing. But after many years of suffering with this disease I am strangely grateful to it. Without it I would be a harder, uglier and less compassionate person. Death casts not one but many shadows, but between them, the light is brighter.
 

jbrandyn

New member
Sounds like some professional counseling would be a good idea, your CF center should have established relationships with clinicians whom they can refer you to. I would also recommend talking to your human resources representative about preparing for the impact CF might have on your ability to work; you have the high ground and loads of legal protections from employer sanctions if you feel the need you can bring a lawyer or consult one after a meeting to see if your firm's policy is good or if you need to bring a firm hand in for your advocacy. Oftentimes having a plan in place with your workplace and colleagues can alleviate the stress of living with a chronic illness. Given that stress makes disease worse coming up with a strategy to reduce your stress will have positive benefits, a professional counselor can help with things like that.

If I hazard a guess you are probably angry about having CF, about your brothers having CF, and non CF related stuff as well and that is normal. Anger is healthy it is a sign that you are aware of what is going on around and within you, anger takes many forms and how you manage it physically affects your well being. So seeing a professional counselor who knows chronic illness and how to manage the emotional irregularity of it really could be helpful.

Best Wishes.
 

ethan508

New member
Thanks for the words of wisdom. I got out for a run yesterday, and that help clear my head some. I really do need limit my exposure to the CF sad stories and some of the negativity about our care.

Therapy seems like a good idea but also feels like a big step (do I really need to commit more hours to CF care in the form of therapy). I would love a message therapy therapist, at least then I could feel physically good while working out the emotionally bad stuff. I'm not very comfortable with emotional stuff.

@welchwitch: You mentioned some good books, would you share the title of those you thought were especially good on this subject?
 

randford

New member
Been there, Ethan. And given that you have two brothers w/CF, I completely understand. At some point, you gotta let it go. The stress alone will create more health problems, the very thing you fear. Then it becomes a self-fulfilling prophecy. Yes, we all have to fight this battle and right now, you're CF expression is mild. Just exercise, eat right, do your treatments, keep your immune system as strong as possible and avoid exposure to certain things and public places. Live life on the positive side. And trust that as new treatments roll out, CF ain't gonna get you! But I completely understand, bro.



Not a crisis per se, but I sometimes have triggers that put me into "CF is going to get me" anxiety mode. I've been in CF freak-out mode for the last week or so. This was triggered when my older brother went in for a clean out coupled with me getting mild flu and sinus infection.

In general my CF disease has been mild enough that I can hide it from co-workers and friends. But I get nervous about the day when that isn't possible (hospitalizations, lower activity tolerance, etc.) and my lifestyle will have to slow down or be more CF-centric (not that I already deal with it daily). Also sometimes I just get down about my lot it life in general.

So what do you fellow CFer do to get out of the funk? Exercise seems to help me in general, but during infection that doesn't seem as wise/appealing. Any other methods? Maybe I should hit the yoga mat.
 
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welshwitch

Guest
Sure! It's been years but I remember one of the books was Full Catastrophe Living by Jon Kabat-Zinn. You can find it easily on Amazon.

Another good read that I read a few weeks ago was about dealing with fear. It's called The Places that Scare You by Pema Chodron. This one especially has lots of techniques to deal with thoughts and situations that trigger fear and anxiety.
 
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windex125

Guest
I agree with just abt everyone who posted back to you. Get yr mind out of that negative mode. I turned 60 last month my case was mild as well till mid 30's as a matter fact I really called it asthma to just about everyone I knew. It was my secret for the longest. I had a great career in the oil industry. Always worked very hard shopping was my down fall for many yrs. But as well went for therapy and it did help of course I went though 3-4 before realizing ok I can deal with this. My other 3 siblings no CF there were times I wld feel very bitter towards them esp. when they complained abt their wt. or a backache. I know that unless you are going though it you have no idea how I am doing. I also keep a positive attitude, read a lot, one of my favorite things to due esp.suspense. I'm done with all the self help stuff. Please don't let the CF take over yr. mind do what you have to do to stay healthy, and enjoy deal with life day to day. Pat-60 female
 

Renee Vasquez

New member
I always think of how far you've already come. Weren't you scared back then, did it really change anything fearing the unknown? Or did it really just not even play out the way you imagined and here you stressed for so long over things that didn't even happen. I personally did that. I found out at 16 and when they started me on meds for some reason my body hated them and i ended up sick for a month my sophomore year of high school. So my first impression of CF was oh shit this is bad! So i cried and I read all sorts of stuff about it, even got an older boyfriend who also had CF from one of these sorts of websites. (horrible idea, i know, but young love...its never made out of good decision making) ANYWAYS over the next 5 years i dreaded the point when i'd be really sick, and here my mid 20's bf with CF is sick with things i'd never even thought about being issues prior to him so I was really freaking out OH NO THIS IS ME IN 5 YEARS!!! (He was 5 years older) and i pity partied myself and thought about how i'm gonna die young and why even waste time going to college, i'm just gonna finish, have a few good years then die. Why even bother! Then it came time to want kids, and oh no read more horrible stuff on that and cried over how i'll never get to have a baby and life sucks. . . NONE of these things happened, NOT ONE. I'm 28 and perfectly healthy, that was a good 3-7 years of tears and worries wasted. After only 6 months of trying i had a huge baby boy, no CF, and I didn't die having him or my health get incredibly bad after cause he sucked all the good stuff outta me. AND i just gave up. Gave up on Worrying. It was a waste. ALL THOSE YEARS, ALL those tears. . . . wasted. My outlook is much like those above now. It is what it is, its going to happen how its going to happen. Dreading it , and worrying about it, and fearing it does nothing but waste the precious time we do have.

Words for thought : You can literally change the way your mind goes in thoughts like these. I've read lots on it. You can train your brain to create new pathways and breakdown the ones already in place. Its proven science, but it does take some effort. First you have to come up with something you want changed, say 'everytime I think about being sick its horrible' then you have to think about where you want that thought to go. . 'everytime i think about being sick STOP. THIS WILL ONLY WASTE MY TIME, i'd rather be thinking about. . . (fill in the blank)' and EVERYTIME you start thinking about the first, STOP, and fill in the blank. And you'll think yeah but my thoughts will just keep going back to the bad, SO thats because thats what youve unintentionally trained your brain to do, so just keep reverting back to the new path. OVER AND OVER AND OVER AND OVER again. Over the course of a week you will get better and better at catching yourself and correcting yourself, after awhile you wont even realize your catching yourself and you'll just revert to the positive, and then after the 23 days it takes to form a habit. BOOM. You've reprogrammed your brain. :)
 
Wow! How neat that you at 28 can even teach a 50 year old something. I do the same thing every day that you used to. I am going to try your method as I have been just trying on my own but not knowing how. I worry about everything, just like you used to and just like you, none of it has played out like I worried. I have SO much to be thankful for and am SO blessed as my son is doing SO well. I am going to try this. I am sure my anxiety expresses itself out on this forum (as I have been told) even though it is not my intention. I worry about just about everything. Thank you and I am really going to do this!
 
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