It’s been a really long time since I published an update on Lizze. There really isn’t a reason I haven’t written much about her specifically, I just don’t like to step on her toes cause she has her own blog to share her story.
Every once in awhile, I think it’s important to shine the light on her because she’s a big part of our family.
Lizze lives every single day of her life in pain. Sometimes the pain is manageable and other times, like the last week or so, it’s agonizing. Lizze was diagnosed with fibromyalgia a long time ago. She’s dealing with a particularly aggressive form of fibromyalgia.
Aggressive isn’t the right word. Severe is a better, more accurate choice.
Like all things, fibromyalgia hits everyone differently. Some people are able to manage better than others because everyone’s different.
Lizze is in pain, all the time. Some days are better than others but in the last decade, I don’t know if she’s ever had a pain free day, and that’s awful. That’s awful for anyone, let alone someone who’s life is riddled with the insane amount of stress that goes along with being an Autism parent. Stress and fibromyalgia don’t play well together.
Anyway, the last week or so has been really bad for Lizze. The rather drastic weather changes are mostly responsible for this, as is the stress that infects our daily life.
When things are this bad for her, it impacts everything. She can’t sleep because she can’t get comfortable. She can’t eat because the pain makes her nauseated. She doesn’t want to move because it hurts to even exist and don’t even think about touching her.
We’ve taught the kids gentle hugs because simply touching her skin is almost unbearable for her.
It goes without saying that she still has the same migraine, going on 5 years now (I think). We recently learned that both the fibromyalgia and untreatable migraines are tied to her Ehlers Danlos diagnosis. Neither one of us had ever heard that before but it’s true. It’s also related to POTS, which she has as well.
All of this is on top of super early menopause and Bipolar II.
Regardless, she drags herself out of bed each morning, makes the kids lunches and helps me get them off to school. She’s there to greet them when they get home from school as well. She even reads Harry Potter to them at bedtime, every single night.
She never gives up but has learned to respect her own limits. Sometimes she’s very limited to what she can physically do and other times, not so much.
Driving hasn’t been on her list of things she does for awhile now. If push comes to shove she can drive locally, but again, she knows her limits.
I would say that overall, she’s doing well emotionally. She has a passion for genealogy and loves digging into our family’s history. She’s actually quite good at it, and has been working on it a lot lately. It’s proven to be a good distraction for her. ☺
She truly inspires me to keep moving forward. It just like with Gavin. If they can get up everyday and keep moving forward, even if they’re only baby steps forward, I can certainly do the same.
I’m going to make an effort to keep you updated on how Lizze is doing. She’s not been in a place to write much lately, so I’ll do my best to keep y’all in the loop.. ☺