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Craziest Weekend of my Life
I’m not exaggerating when I tell you that Labor Day weekend was the busiest, most action packed weekend of my life. I left home Saturday around noon to make the two hour drive to Eugene for the Oregon football opener at 5:00. Then around 9:00, we drove from Eugene to Portland (about two more hours). Sunday morning, we had to race (pun intended) to get to an indycar race. There were a number of donors there. I got to meet and thank them, and show them how JACO works. It was overall a fantastic weekend, but it was also a bit much for me to take. The constant go go go takes a toll. I can’t function unless everything is just so. My stamina took a major hit on two different occasions over the weekend. I’m having to pace myself more than I have in the past. I find that staying hydrated helps. Do you guys have this problem? How do you manage it?
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7 Replies
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I’ve always been a go go go type person, unless I’m sick, then everything comes to a screeching halt. Unfortunately it seems like when I do a lot I get sick a lot. I guess balance is key, although hard to do.
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Yeah I’m the same as DeAnn. In college especially it was normal for me to have a full coarse-load and be involved in multiple student organizations. During my Junior year when I was Features Editor for the school paper, I’d be in class most of the day and then work in the office until about midnight. My co-editor and I would each work two nights a week, and I had the schedule worked out with my caregivers. I’ve also gone on trips with just friends, and there are plenty of nights when I stay out late.
I agree that finding a balance is good so you don’t overdo it, but I also don’t think you should allow SMA to keep you from having fun and living your life. I’ve also gained more energy since starting Spinraza, but even before that I maintained an active social and work life.
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Go go go doesn’t describe me at all lol. It’s not my nature to begin with, and SMA doesn’t really allow for it anyway. At least in my case.
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If you’re not a go, go, go type person you definitely have to pace yourself then when something like this comes up. Maybe if you can schedule in some down time in between or after that might help too. I definitely hear ya, SMA certainly gets in the way of getting everything done. One of my mantras is to do what you can, and if you can’t that’s okay.
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Yeah, good point. It’s tough to find balance. You don’t really know you’ve overdone it until you’ve actually overdone it, and then you’re kinda in trouble.
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Hey Ryan I just read your column about your Labor Day weekend experiences. Have you ever considered using an external catheter for peeing? I’ve used one for years, and it definitely solves the problem you were talking about in your column about having trouble getting to a bathroom when you’re out. It’s also not nearly as awkward as an internal catheter. The external ones are pretty easy to put on, and they last. It’s just very convenient for me, as I can stay out all day without having to worry about getting to an accessible bathroom. Just something to consider.
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No, but I think I’ll look into it. It should solve this issue.
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