I recently received an email by someone that I consider to be a friend in the CF community. We've worked together on a project that had us talking every week for about 3 months and I was fortunate enough to get to know her and her husband. I feel invested in her and was honored that she would reach out to me in this situation. Her writing is in blue with my response in italicized black. It's split up like a conversation so it's easier to follow:
I read your blog post today and I feel like it really spoke to me. Last month my doctors gave me a "new baseline" lung function of 59-60 FEV1 which was down from 80. I stayed pretty positive. After all, I felt fine and was able to run a bit. I sat down and made a plan for myself to keep working out to be able to run 3 miles. Then life happened. I got called into the hospital to work 3 out of the last 4 of my weekends (she tried the 4th but it was my wedding anniversary). The girl I job share with has 2 kids who have been getting sick and passing whatever it is around her household. Although most weeks I still got 2 days off at some point, there were stretches where I worked 8 out of 9 days. I was/am exhausted and now, puny. I'm coughing all night. I get winded doing laundry...much less running.
First things first, this IS NOT your new baseline. You will simply not allow it to be. You will make the adjustments necessary because the two most important people in your life is your husband and you (You're the most important by default since you are your husband's most precious treasure...at least that's what I tell myself regarding Mandi ;) ) Was the crazy work schedule happening before the "new baseline" or after?
Life happens to all of us. There are seasons of no problems and seasons of nothing but problems. The trick is to maintain our level of commitment to our health, even at the expense of some things we love in life. When I get sick and life is crazy, I basically have "no life". I handle my "have-to-dos" (in your case work) and outside of that, it's all about my health. If I'm not working, I'm at the gym or doing a treatment. It's no fun, no fun at all. Frankly, it sucks. But, when I'm in the season I always think back on two things: How I felt/feel when my health wasn't my priority, and the about the promise I made to Mandi. I promised her she would never be alone. Ultimately, there is only One person who can keep all promises, but I'll make sure that I do everything on my end to make sure I stay true to my word.
I am so sorry that you are feeling the way that you do. I wish I could take it from you. I wish there was something I could do.
I guess I just don't know what to do. I got the "be proactive" lecture from my doctors and I've sent them an email asking what I should do. I'm just frustrated because I feel like I can't win. Since my coworker has sick kids, I feel like saying "Sorry [name withheld] I can't trade you a day because I may get sick if I don't sit on my couch. You're going to have to tough it out." is so lame. I'm not missing treatments, and I was exercising. What more can I do?
Let me say what your excuse is actually, maybe not what she'll hear, but what's actually going on, "Sorry [name withheld], I can't trade you a day because I'm sick. I'm sick because my health is declining. My health is declining because I've been putting more into this job than into my health. I need to put myself first for at least a while and get back on track. You're going to have to make other arrangements.". That is NOT so lame. That's being selfless for your husband. I understand that she may have to find another job or spend (lose) money on different childcare, but frankly, it's either you or her. You'll be the one losing money (and other precious commodities) if your health continues to decline.
There are times in our lives when what we did before will not fit, or fix, the present situation. I lived for years doing the same amount of treatments and exercise all the while watching my lung function decline. I wasn't willing to adjust. I loved my job. I was good at it. I felt valued. I didn't want to give that up. The ICU and the threat of intubation quickly changed my frame of mind. Seeing a lung function in the 20's slapped me in the face. I new if I didn't change, I was going to die.
You're not there, but I don't want you coming even close to that.
My doctor suggested that I may want to try a less physical job...maybe at an outpatient clinic where the patients aren't as sick and don't typically have to be lifted or anything. But there are no jobs around for that...especially not full time. We can't afford me not to be full time right now.
I don't think the physicalness of the job is the bad thing (in fact, it could be good). But being exposed to sickness can drastically alter your course. I've never been as sick with non-CF sickness as I was for the past year. I have a little girl who loves to give kisses, and I don't turn them down. I catch what she has almost every time. It's been hard. I'm trying to make adjustments, like washing my hands more and less kisses, but it's real hard. However, I know she'd rather have a living daddy who doesn't kiss her as much than a dead one not kissing her at all.
As far as the job situation, all you can do is to keep your eye out. Also, I'd rather see YOU make the decision to switch jobs, go part time, change careers, etc. than you being forced to change because of a decline in health.
I realize now that I'm reading this over again, I'm kind of dumping a lot out there. Sorry. I just wanted to see if you had any ideas.
Listen, I'm always here for you. Always. You're one of my faves and I actually hurt a little bit reading all of this. I wish I had the answer. All I can do is share with you what I've learned over the years with my (good and bad) choices and you have to take it from there.
Please never, ever hesitate to reach out.
I'm glad to hear you're doing so well! Your baby girl is adorable by the way. I like seeing all her cute fb pictures. :)
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