This week nearly broke me.

Monday I had to do a Functional Capacity Assessment for long term disability insurance to prove that I can no longer work. The test itself was simple. Moving pegs on a wall, picking up small pegs and putting them in a board, then typing for about an hour. Plus I had to pick up a milk crate with weights and put it on a shelf with various weights for the same amount of time. Sounds super easy right?

Not with Myhre’s. The insurance company’s incompetence at not even being able to judge my work capacity based on a correct diagnosis forced me to do this test that caused me harm. Yes. Harm. I cannot lift my shoulder above my head now. My whole body hurts. And I am exhausted. Add an 8 hour eye exam yesterday in which my eyes are still dilated, I am done.

Like all good Myhre people, did I rest? Nope. I went to choir practice last night for our upcoming concert. The result was an embarrassing performance of a cracking voice that was beyond exhausted. Did I mention our boiler went out too? It was 53 degrees in our house when we got home yesterday.

How do we, as people who either deal with Myhre or love someone with it, balance 13 doctor visits, full time work, parenting, and time for ourselves/family/friends? I wish I had easy answers.

Last year, I gave up full time work in a career that I loved. My decision came down to my health or my job. Unfortunately, in the US, this is not an easy decision to make. A year later, we are still a one income family. We should not have to choose between health and a career. Or living in poverty. Or burning ourselves out by trying to do it all.

Nothing about this syndrome is easy from the multiple systems affected to the number of doctor appointments to the daily strain of living with all this. Whether you have Myhre’s or love someone with it, it is not for faint of heart. Keep your chin up and keep going. We got this!