Well, I am back on bed rest for the time being, while we (my med team) are working on a plan to manage the chronic fatigue and symptoms.
The neurosurgeon at OHSU spent less than 10 mins with me and told me that I’ve had two brain surgeries now and the pain and “significant” weakness was permanent for the rest of my life and I just needed to learn to deal with it.
My physical therapist gently reminded me that I did just have brain surgery and I’m going at it too fast. I still need help putting on my shoes and shoes and I’m walking with a cane. I have had quite a few falls this week and need to allow my brain and body to rest. She said we can’t say what’s “permanent” at this point because we are still so close to surgery. She said we are going to do some strengthening and balance work to eventually get me away from my cane. The cane is a tool for now, but not permanent.
This time last surgery I was still in bed rest. The surgeon this time said they know more and are not as scared of the recovery as they were before, so I could be more active. I took that small piece and ran with it.
My physical therapist explained that the brain doesn’t heal unless we give it time and rest. Which, I know from the first surgery. I just wanted to skip this part, I’m so ready for this chapter to be over in my life I tried to rush through it. I think part of me was thinking my body would adapt and I could will it in a way.
I need suggestions for some simple crafting ideas or anything that I can do from my recliner. I have a lap desk and my friend gave me a beautiful color pencil set and coloring booking I’ve been working through.
I’m just feeling restless and need something that’s low stimulation and easy for my hands. Movies and books are hard for me to follow along right now.
Any ideas? 🙃
Thanks,
Shae
Weathering Chiari 