I spent Friday and Saturday at an amazing training session with a group of my colleagues. It was some of the best professional development I've ever done, but it showed me the danger in putting my schedule in another person's hands.
Friday started when I woke up at 6:30 a.m. After getting ready and then an hour drive, I arrived at the hotel and was handed an agenda. A day's worth of activities (many of them somewhat physical) going from 9:00 a.m.--6:00 p.m. with an hour off for lunch and two fifteen minute breaks. Then, an hour off for dinner and two more hours of activities that ended up actually going until almost 10:30. Clearly, this was an event planned by a very healthy person.
By the time we broke for dinner, I was a mess. A friend of mine who also has health issues was in the same state, so we excused ourselves to head to our rooms for a nap during the first half hour of dinner.
Most of my colleagues know about my disease, but they'd never actually seen its impact on my life. The perception, I realized, was that I needed to use eye drops a lot and take a bunch of meds, but was basically OK. I know they didn't mean anything by it, but I was taken aback when the response to our need for a nap was, "You (pointing at my friend) should definitely take a break! We'll save you a seat." She's had surgery recently so they understood her situation, but I think they didn't know what to make of mine.
I was really grateful when my friend--who knows more about my lupus/SJS overlap than the others--clarified, "We both need to rest. It's important. Save us both seats." I think people were confused, but I was too worn out to explain at that point.
The next day started at 9 again and went through 3:30. That would normally be a manageable time frame, but I was still beat from the night before. Again, my colleagues were confused. I'm a super cheerful, helpful person, so their view of me until this weekend was that I'm high energy and always on the go.
I was a little embarrassed by the whole thing, but I think ultimately it was probably good for everyone to see an "invisible illness" sneak out to become visible for a little while. They understand me more and maybe also other people in their lives who are dealing with similar struggles.
Oh my, I can relate to your exhaustion! This is an illness that seems so hard for others to understand. You have to look out for yourself because others just don't know! Take care and get some extra rest!
ReplyDeleteThanks for the good advice! I definitely realized that if I attend another of these conferences, I'm going to need to pick and choose. I want to do everything, but it's clearly not a good idea.
Deleteso sorry this happened- but totally understand that "I've hit the wall" feeling that just comes over us.
ReplyDeleteI have started a college course that will require I travel 3 hours away and stay a week every three months. I will have to share a hotel room with a co-worker as several of us are taking the same program. I also have revealed very little of how this( illness) has impacted my daily life- my co-workers see me usually at my best( or faking it at my best!)I can't pull that off 24/7 for a full week!I won't be able to go out after class to shop, have dinner and take in the town. I am hoping to haul myself up the stairs and pray I sleep alright
I know what you mean about faking it at your best--I think that's what I've been doing up until now. Good luck with your class and your time away; I hope that you stay well and enjoy it.
DeleteIt is hard when that mask slips off isn't it, and the invisible is seen. It might not have felt good at the time, and I'm sorry you went through this, but you friends will understand you better in the future.
ReplyDeleteI think so, too. I don't think they had any idea that my illness created so many complications for me until they saw it firsthand.
DeleteYou are so right about it being an invisible illness! I am newly diagnosed, relatively, but I've been having symptoms for YEARS. People thought I was just lazy, and I was beginning to think they were right. I ended up having a near catastrophic event that opened my eyes to the fact that something REALLY was wrong, so I began pushing my doctors. I am a Registered Nurse by trade that specializes in trauma/emergency, so they all put it to being depressed and stressed, etc... I'm sure I'm not telling you anything foreign, but it took a Neurologist,yes a Neurologist, to finally order the proper testing to get me diagnosed. I have a Sjogren's blog that I have just started. We have got to get the word out about this little known disease, and that it is more than an eyedrop and drink water problem. Thank you for all you do.
ReplyDeleteIt's great that you're sharing your story. I think that's the best way we can help each other. I couldn't see your profile when I clicked on your name, so I'm not sure where to find your blog. If you post a link, I'd love to read it!
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