We tried rest, didn’t work. We tried medication, worked for months then abruptly stopped working. We tried exercise, she got worse. We tried rest, she got worse. Now we’ve finally found someone who can do a very careful strengthening routine with her…and this week she’s worse again. If you haven’t lived this you cannot understand how it feels when your 13 year old doesn’t want to see another clinician because ” They don’t know anything. They can’t help me.”
I now know I’m a fixer. I can’t accept that I can’t find an answer to my daughter feeling too unwell to go to school or have any kind of active life. And yet, after nearly 2 years, acceptance is becoming my greatest friend…it protects me from the agony of false hope. I would do anything to help my child and here I am where there is virtually nothing I can do except love her, feed her and let her do anything she’s up to.
I’m getting pretty angry about the lack of attention and funding this illness has received to date. This morning I sat there watching her make herself swallow medication and wondered at the immense responsibility I have for this life as I daily make decisions on what she takes/eats/does with absolutely no evidence-based guidebook. The responsibility comes with parenting of course, you never know the cards you will be dealt. But most people get a little more research thrown their way when chronic illness rears its head.
I’m, of course, hoping this week’s sore throat, dizziness and weak legs is due to a virus and not the gentle pilates. But am I kidding myself? Whatever the cause we’ve eased back off the ‘exercise’ for the moment again. (Exercise in this case is lying on the floor with her head raised slightly and raising and dropping her arms. Seriously. Do you get what I’m saying? This wipes out a child who used to do 50 push ups plus other exercises then swim for 90 minutes.)
Anyhow, I just needed to vent. My girl can still get out of bed, mostly. We have a roof over our head and enough money. We have loving extended family and great friends. If spring could just come…..