I think I have wanted to be a teacher since middle school. I love learning new things, I love talking about them with others, and I get a serious thrill from helping students discover what they're capable of. My job is part time (30 hours/week), pretty flexible for a teaching gig, and I have an amazingly supportive staff. I feel blessed every week to be part of such fun, challenging, and meaningful work.
And I'm terrified of not being able to continue.
I read somewhere that about a quarter of EDS patients end up on disability at some point. That doesn't just include people with the full EDS/POTS/MCAS trifecta, either. At the Dr. Afrin talk I recently went to, pretty much every patient used as a case study had to stop working for at least a couple of years while they figured out treatment options.
I am not afraid of having to stop working permanently, or of being on disability for the rest of my life. I am incredibly fortunate to still have a pretty solid skeleton and to be responding well to eating salt and exercising. On some days, though, when my MCAS symptoms are exhausting, I have fleeting thoughts running through my head on repeat. What if this is it? What if it gets to be too much? What if 30 hours is still too many? What if I'm just too defective to keep this up? I'm finally getting over my impostor syndrome and now feel that I am knowledgeable and capable in my position at work. I seem to be replacing it with a fear that I'm just kidding myself, and that a normal life as a teacher isn't in the cards for me.
My job is really tough sometimes. Not only is teaching itself exhausting, but I'm the only academic instructor at an alternative school that takes on some of the district's most challenging (and also wonderful and inspiring!) students. So, if I weren't able to keep this up, there would be plenty of jobs I could take that would be a heck of a lot easier and less energy consuming.
Even that thought, though, is heartbreaking. I love my job tremendously, and I've always believed in following your passion, rather than what's easy or what makes the most money. I'm not thrilled to make a change out of what I sometimes feel is weakness or inadequacy, rather than what feels right.
Yet sometimes I meet people in support groups who aren't working and who have time to be resting and figuring out how to feel better. Then I go to work, and the thought of getting through the day makes me want to scream and cry, and I think "why can't I be home, listening to what my body needs right now?"
Taking care of my body is sometimes just as time-comsuming as my job. I have to exercise for an hour a day to keep my joints together. I have to eat several times a day and, since I can't eat leftovers or anything that wasn't freshly cooked/prepared, eating is never a quick process. I have weekly therapy and physical therapy, as well as nutrition appointments, conference calls with my EDS specialist, periodic visits to other doctors like the sleep clinic or GI specialists, monthly trips to the hospital to pick up meds, as well as the many naps and other in-the-moment fixes. Then there are the constant fights with my health insurance or billing centers at hospitals, complete with time put on hold, and the many hours I've spent researching each disease and educating myself, since most doctors don't know much about it. On top of all of this, I have to go to bed around 9:30 in order to feel refreshed (if I in fact sleep through the night). If I push myself too hard, I end up crashing and (like every day this week) not able to get anything done after work.
The reality is it's pretty unreasonable to think I can have a full time job, have a social life and hobbies, AND take care of my body. So what's gotta give? Do I give up on having friends? Or stop painting and doing the things that bring meaning to my life? Do I take time off from work to figure it out? What about getting a less exhausting job?
I don't know how to make these decisions, so I kick the can down the road and leave it for a future me. One of these days I will need to actually make a decision. For now, I just try to feel out in each moment how each thing feels. I think what I'm most worried about, though, is knowing when I've hit the point where I'm doing more harm than good. How much pain do I put myself through before I let myself give in to what my body and mind need? On the other hand, I've never been someone to give up when the going gets hard, and I do value resilience and persistence. How do I know if it's too soon, if I can still tough it out?
I remain grateful that I do not fear leaving work forever, or potentially at all. This internal struggle has also helped me appreciate the privilege of being able to work, in a way I would never have imagined. But it is still difficult to keep the doubt from creeping in at times.