Emily's 65 Roses - I Need (CFers') Input Here...

From: Lisa Worthington-Brown Date: June 13th, 2011 03:29 am (UTC) (Link)

This is Lisa--obviously I don't have CF, but have some input. I think that some of it is personality and the way that you deal with your disease and also trying to proactively preserve your health. Gess worked his ass off pretty much until he died. He went on short-term disability in August in order to get the tx evaluation and so was technically out of work for 3 months. About a week before he died he was bitching to his doctor that he wanted to go back to work. Work was important for Gess and so he chose to do that in spite of how much it taxed his health. He was hospitalized 12 times in 2009, more in 2010. He was on IV abx more often than he wasn't sometimes. But for him, it was worth it to work. Had he done less and worked on his health would he still be here--maybe? But would he have been happy with his life--probably not? For him, working was so important that it trumped other stuff. I don't get it, but at the same time I do. It was his way of being "normal" and living his life. He would rather live like that for a shorter period of time than do less and live longer. For other people--and it sounds like you--that is not the case. And I completely understand that. Could I work while I am grieving and dealing with this cancer? Probably. But I don't consider that a healthy option for me right now. So I am taking the steps that I feel like I need to for my health (and sanity--what I have left of it anyway).

Long answer for no, I don't think that you are a lazy fuckwit. I think that you are doing what is best for you and your health right now. That may chance at some point and you may want to do more. But, don't compare yourself to others. Each individual's journey is different. And I think that even with lung functions, what feels like 50% for one person feels differently for another person. Gess was at 43% and not on supplemental o2 (until the very end) and he looked and acted much "less sick" than some other people with CF with higher lung functions. It's all relative.

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From: emily65roses Date: June 13th, 2011 03:40 am (UTC) (Link)

I already replied on fb, but thank you for this, Lisa. :)

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From: Amy Silcox Date: June 13th, 2011 03:32 am (UTC) (Link)

First I had no idea you had a blog!

No I don't think you are a lazy fuck. Each case is different. Inflammation can cause exhaustion and if you have a strong asthma component that would be it. Also, I know I tend to get "lazier" when I am doing less. As in, I felt worse when I was waiting to be approved for SSDI and didn't work etc. Once I started working part time and starting a routine I felt like I had more energy. Mentally of course. Physically I have noticed a decline in the past year or so. I've only dropped 20% in the past 4 years but I have noticed a HUGE impact on my abilities to do things. So going from 100% - 70% will really knock ya down. 4 years ago I could work full time, go to school part time, and maintain a dam good social life surviving on about 5 hours of sleep a night with about 56% FEV1. Now the thought of working full time alone makes me tired and with 5 hours of sleep I am nauseous and miserable. I need at least 8 hours, usually more. Its good to know your limits. You don't want to wear yourself down all the time, but you also don't want to hold yourself back from what you could be doing. Going for the job that is gonna require 60+ hours a week is not a good idea, but the one that is 30 is acceptable. It takes a lot of time and acceptance the realize what you can and can't do and you will always wanna push those limits. Its not fun to look back and see what you used to do and realize you can't do it anymore. Hope my novel made some sense <3

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From: emily65roses Date: June 13th, 2011 03:40 am (UTC) (Link)

Yes it made sense, and thank you for it. I feel like I sleep a LOT too. If I don't get about 10 or more hours at night, I WILL fall asleep at some point during the day. Seems excessive sometimes, but I've been that way for years.

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From: (Anonymous) Date: June 13th, 2011 05:27 am (UTC) (Link)

For me, it depends on several things- level of inflamation, how bad my allergies are acting up (they knock me on my butt, especially when I get a sinus infection with the "brain fog" that goes along with it), how low my small airways numbers are, and- being an excercise hater, I hate to say this, but- how much regular excercise I'm getting. BIG difference *weep*.
Another one is how compliant I am with my treatments, having a muccoid p.a. I think makes that a big factor :S .

Having to go to work on someone else's schedule (as opposed to getting things done on my schedule, so I can take the time to get extra sleep when I'm weary, rest on an off day, etc.) makes me sick quicker than anything. I have to be very careful when I schedule things, or else I will literally make myself sick.

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From: (Anonymous) Date: June 13th, 2011 05:30 am (UTC) (Link)

Well, crap, Em, that last post that is awaiting approval (with the "excercise hater" excerpt) :P is from me, Andee.

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From: (Anonymous) Date: June 13th, 2011 02:04 pm (UTC) (Link)

I know I'm biased but I don't think you're a lazy fuck at all. I have seen you get up and do dishes and then have to lie down cuz just doing dishes is exhausting for you some days. Healthy people (and some CFers) just don't understand that! I have seen you slip from 101% to 69% and I don't like it either. Iwant to see you happily engaged to Mike and planning a big wedding and then moving on from there.
Something to think about......you are a really good writer...think about writing a book, not just about CF and you, but about Dad and everything else inour life (uncle peter and now grampa)your breakup with Mike. Sort of a journal but one to be published.....MOM

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From: (Anonymous) Date: June 14th, 2011 11:43 pm (UTC) (Link)

my answer to what you should be doing is exactly the same as everyone else's (and exactly what you expected) -- namely, that everyone is different. it's silly to sit around comparing yourselves to others (although of course i do it all the time). but honestly, it's like someone who walks comparing themselves to a runner. they're not better or worse -- they're just different preferences, really.

i will say this: do what makes you HAPPY. honestly, and i mean this, your health is going to be up and down. you have CF. yes, you should always keep your body's best interests at heart, but if you spend too much time worrying about survival and not enough time worrying about your life you might regret it. so ask yourself what you WANT to do. if the answer involves things that are quieter activities, that's great. a lot of people have a huge impact on others without ever having a traditional job or anything like one. if you're asking this question because you're worried about what other people think of you, don't bother. other people's opinions don't really matter in the long run. if you're asking it because you would like to do more, then you need to figure out a way to do it. without sounding rough, no one else can do that for you.

for what it's worth, i think you're wonderful. and keep in mind that this all comes from a woman that multiple doctors and various other people have accused of running herself into the ground with her decisions. but the fact of the matter is that i have been more active at some points in my life, for all sorts of physical and personal reasons, and calmer in others. so long as it's your choice, i think you're doing fine.

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From: emily65roses Date: June 15th, 2011 01:12 am (UTC) (Link)

Thank you for your input, nameless stranger. Hehe.

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