“They tried to make me go to rehab/I said, no, no, no/Yes, I been black/But when I come back, you’ll know, know, know.” -Amy Winehouse
Outpatient Functional Restoration Program at my hospital, you had me at sleep hygiene! Rosebud came into our bed at 2am, which was two hours ago. No matter how many meds I took yesterday for a bad flare (also from poor kid-related sleep), I can’t fall back asleep. Neither can she. Screw this 24h parenting business!
On Monday I begin a 3x/week rehab program near our house and daughters’ school for three weeks. It’s small, modern-thinking group care that caters to fibro and similar maladies. There’s PT, OT, an MSW, mindfulness/meditation, rest breaks, and lectures on nutrition or spoon usage (the #spoonie kind, not etiquette class!). My hardworking Pain Doctor and Nurse Practitioner are also very involved.
“Yes I’ve Been Black”
Who has lived in pain and fear for three years and not had very, very dark times?! Yes I have fibro and it’s a huge, disappointing, disgusting part of my life but I’m still ME. A friend was worried recently and checked in with Husband to ask if I was suicidal. I appreciate the concern but also have my feathers ruffled because it’s a reminder that fibromyalgia is so hard to understand. I’m absolutely not suicidal. I’m even going to rehab!
I try so fucking hard every day. Win some lose some. Without fibro our life would be phenomenal, so when I can I try to make it so. I lost my Mom as a teenager to breast cancer. I watched her fight, win, fight again. Then she, my Dad and I endured the awful process of dying with dignity. I would never intentionally end my life and leave my daughters as alone as I was.
I’m particularly excited about the goal setting aspect of the rehab program. Here are mine:
-Slowly gain more endurance so I can enjoy more outside the house family time.
-Learn better pacing so I flare less.
These will hopefully help me better handle life itself, and literally train so I can enjoy an important family trip at the end of this school year.
I was doing well and felt strong after my round of PT last summer—just before I turned 40—until I endured a terrible UTI (I’m more susceptible due to the bladder injury I suffered after my necessary hysterectomy), which lead to an IC diagnosis, and a lot more pain and time stuck in bed. Side note: I’m too busy fibro blogging and advocating lately to binge much TV. What a positive change I made for myself when I started 40 & Over on a whim on a sleepless September night!
I’m so used to either hiding my pain, which is often possible with an #invisibleillness; not being able to respond honestly when asked how I’m doing because my kids are nearby; or not talking about it during phone chats because a friend who I wanted to catch up with talked for so long without realizing that I have so few spoons for talking on the phone and generally have to keep it short. I’m working on speaking up for myself better outside of writing.
My rehab program will be all about honesty. I think it will healthily rub off into other areas of my life. Wish me luck. And better sleep. And spoons!