I could write a book on this one. Even as a nurse I struggle to find the right words. I relied on the experiences my family had. I would always tell them I went to bed 45 woke up 85. The confusion is hard to describe when you’re confused. I would say what was difficult to do now versus in the past. I would describe my experiences as feeling like I was autistic sensitive to light and sound in touch.
For family now I say I’ve been thrown into a spectrum disorder that I don’t understand and that’s hard to navigate. But I encourage everyone to get evaluated for their symptoms to illuminate the fact that it’s not a physical function that is causing the problem but it’s actually a complex inflammatory neurological disorder. We may never be the same but we can work together to help one another and other people who don’t have the benefit of being part of this group I’m very grateful for everyone.