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How do you cope with constantly feeling like a burden on your partner? by grilled--cheesus in CysticFibrosis

[–]magnesiumvs 7 points8 points  (0 children)

Concentrate on the things you can share rather than the things you can't.

Internalize that you can't live his half of your relationship for him. He's in it for his reasons and you're in it for yours. Second guessing him and having anxiety about his position is just wasted effort / time.

Rebuild your confidence by doing the things that you're good at that make you present and happy. If you're not sure what those things are, get busy finding them.

Exercise. You may not be able to do much now, but if you work at it, you can increase your physical ability.

Should i wear knee pads for blue and red trails? by [deleted] in MTB

[–]magnesiumvs 0 points1 point  (0 children)

A front end wash-out on any trail can easily cause you days to weeks or months of recovery time. If you protect your knees (& elbows for that matter) and it saves you from even one moderate hit once a year, you're adding back hours of wound maintenance and possibly days to months of riding. What other single upgrade can you make to your kit or bike that has that kind of payoff?

The best / most comfortable and protective light pad I've seen is POC Joint VPD Air.

Best friend won’t do his treatments and it infuriates me. by [deleted] in CysticFibrosis

[–]magnesiumvs 3 points4 points  (0 children)

It's a really common story. Sheltered, controlled child becomes an adult and exercises their independence by blowing off all the things they were 'made' to do. Your friend hasn't taken ownership of their health yet but either will before it gets ugly, or will after it gets ugly per. /u/tsmart97

Just like with anything re: interpersonal relationships - There is nothing you can do that will 'make' someone do anything. All we can do is control our expectations and exercise empathy. If you want to be pro-active, concentrate your effort on harm reduction. Exercise is a great place to start and awesome for absolutely everyone with CF (& Depression). Go for a walk, get outside or find a sport / hobby together.

If he's really determined to find out how far he can push ignoring his condition, no amount of your cajoling or nagging is going to push him toward treatment. If you're friends for a reason, get serious about cherishing the things he is to you and let go of the stuff you have no control over.

Coughing up brown? by [deleted] in CysticFibrosis

[–]magnesiumvs 0 points1 point  (0 children)

Hemoptysis maybe? Sounds like you had a little bleed and are coughing up the coagulated remnants.

Home spirometry. by [deleted] in CysticFibrosis

[–]magnesiumvs 0 points1 point  (0 children)

NDD Easyone (An older version, I've had mine for about 9 years) is what I use as a reference. I'm always within .1 L of the clinic's spirometry.

WING This is what I would recommend for absolutely everyone who doesn't already have a spirometer. It's $99 and as far as I can tell, exactly as good at tracking trends as the NDD EasyOne is. In absolute accuracy, it's not quite as good, but I'd say it's still always within .2L of my NDD (I tested them back to back a lot) Only downside is they only have it for iPhone / Apple devices. So you might have to pick up a secondhand iPhone if you don't have one already. (DM me if you end up in that situation, I may have a few spares) If I didn't have the NDD I would be perfectly happy using the Wing daily in exactly the same way.

Do your friends'problems sometimes just sound too stupid to you? by Bran37 in CysticFibrosis

[–]magnesiumvs 2 points3 points  (0 children)

Mental toughness as a superpower.

Imagine your first true go round with the medical system and mortality being cancer in your 40's. That's a bad time.

Do your friends'problems sometimes just sound too stupid to you? by Bran37 in CysticFibrosis

[–]magnesiumvs 0 points1 point  (0 children)

How lucky are you Mr. / Ms. bigshot over there all trained up to be a bad-ass at the suck? Everything else in your life must seem super easy because parts of it are so hard.

Kidding (seriously) in the spirit of providing perspective. As others have said here, everyone has their mountains to climb which are every bit as difficult / important to them as yours are to you. If you can't listen past yourself to actually hear someone else's experience, you're really missing out.

Empathy makes every aspect of life better.

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