Invisible Illness Week 2015: I Fight with Caffeine
In years past, I shared stories about my own journey with severe PCOS, infertility and hormonal imbalance. Those were tough days and I’m thankful most of that fight is over. (I had a total hysterectomy in 2008 that relieved 95% of my pain and hormonal issues.)
This week my sharing is for our daughter. I blogged about my quest on her behalf for answers, and the fight against ignorance. Today, I share some specific issues she faces on a daily or near daily basis that most people don’t see.
She is twelve now and her chart reads congenital hypothyroidism, Hashimotos and Albrights Hereditary Osteodystrophy. I believe the first two weave together from the Albrights, that diagnosis is so rare it is hard to find information on it.
What people see is a short-statured tween who is overweight with a round face and short fingers/joints compared to her peers. The diagnosis and the reality for us is there is a learning challenge for her. What comes easily for her friends, she has to work for.
And what makes it even harder is there are times she is absolutely exhausted.
I don’t mean I stayed up too late and I need a nap.
I mean she sleeps at least eight to ten hours a night and then will fall asleep on the commute home from school and take a two hour nap. And still go to bed at the same time.
For the doctors that ask for anywhere between 20 and 60 minutes of exercise every day from her, the school year is near impossible to get that from her. Last week she asked to take a walk after dark. This was so rare and I’d already taken a little walk and a bike ride, I threw on my sneakers and off we went. Tonight? She has a test tomorrow. She barely made it through dinner. She’s sleeping hard as I type. When I’m done here I have to wake her and urge her to give her all when I know she’s wiped out.
It’s hard to discern what she can handle and what’s too much, so we adopted the attitude that we’re always going to do our best. I know if the gym teacher told her to forget about wellness, have a seat, she’d do it. But we expect her to try even if she is the slowest kid on the team.
To keep her moving forward, it takes energy for me. Most of the time I’m up for it, but there are times I’m tired or have other projects calling for me as well. That’s why I have my coffee most mornings. I refuse to let her coast through life because she has a chart filled with medical jargon. At the same time, I’m ready to advocate toward anyone thinking she is milking her exhaustion. Trust me.
One thing I hear from people with Hashimotos or other thyroid issues is that when they tell people they are tired, the compassion isn’t there. Usually resentment is what they are met with. Hopefully these posts this week are raising invisible illness awareness for us all.
