Rosie, could do her homework anywhere in the house, but pretty much always chooses to sit beside me on the bed while she works. Not because she needs my help, but because she wants to be near me. I am blessed with such warm, loving, generous daughters.
This morning I spent 10 minutes folding laundry, and became completely exhausted, disarthric, had to sit down and rest in tears from the frustration of attempting to just "DO" a normal activity. Gordon came to the rescue with a hug of support. He listened to me in my barely intelligible speech that he has learned to decipher, he held me, he comforted me. The thing is, most of the time, when I am sitting still, writing, "active" online, I forget how different my body really is. Then I will have this sudden experience, this sharp slap of reality when fatigue bites down hard into the moment. I get up to actually be physically active in the most mundane tasks and wham!
I do not share this because I want you to feel sorry for me, that's not it. I just need to write what is real. This is not just my story you see. This is the story of many, many other people living with chronic illness. It is hard, it is painful, it is frustrating. We have moments of grief. And then the tears subside. In my case, my voice returns to normal, a signal to my heart to relax, that I am safe, that I'm still me, still whole, broken, but whole. I am surrounded by a loving family. I am blessed, not everyone has the support of a family nearby, an amazing partner, loving children. I am so deeply blessed and grateful. And yes there are bumps, and bruises and uncertainties...but overarching all the small awarenesses of loss, there is comfort, there is love.