Thank You

As I write these words, my parents are on their way up here to spend Thanksgiving with me. So this is going to be a quickie.

This year, I have a lot to be grateful for. First of all, I’m grateful for my parents. Chronic illness doesn’t just strike the patient – it strikes her family and friends as well. This has been a tough road for my parents. Have they responded perfectly to this scenario? No they haven’t. They’re not sitcom parents – they live in the real world. They’ve been angry and scared, they’ve cried and screamed, and sometimes those things have not been expressed in a way that has been comfortable for any of us. But in the big picture those moments are not what matters. What matters is that at the end of the day, they’ve been here for me. At the end of the day, they’ve been amazing. They’ve given me absolutely everything they have to give and have battled to stay strong and supportive for me. They’ve shown up and they’ve stayed. They’ve loved me, they’ve held me when I cried, they’ve fed me and made my bed, they’ve learned to love my cats (a VERY tall order), they’ve driven me anywhere I’ve needed to go. They’ve given up on the prospect of grandkids and have surrendered the comfort of their retirement to take care of me. I wouldn’t have survived this long if it weren’t for my mom and dad and I love them and am endlessly grateful that I got them as my parents.

I am also grateful for my extended family of friends. You guys, all of you, mean a lot to me. I’m talking about my tweeps, just as much as my so-called real world friends. Guess what? I live in the virtual world now, that’s where 90% of my human interactions come from. So as far as I’m concerned you ARE my real world friends. Even if I don’t know your real name. 🙂 Whether it’s just a favorite or a like, sharing something with me on Facebook, whether it’s an email or a phone call or a Skype, every single one of our interactions has meant the world to me. They are the nourishment that has kept my soul alive in this the darkest of any time I’ve ever been through.

So thank you. I love you guys.


Where I’m At Now

Whenever I try to think of a way of writing about my disability, I immediately get overwhelmed because there’s so much I want to communicate – to myself as much as to friends, family, the world. And, you know, I only have so much bandwidth. Like I want to write about ALL THE THINGS.  Every single aspect of my life is dominated by CFS/ME and it’s hard to write or talk about one thing without thinking about how it’s connected to all these other things. So I’m just going to write about where I’m at today and see how that goes.

Today was a good day. I had a Skype session with a tweep (hi Annie!) and it was wonderful. The absolute worst thing about having chronic illness is the loneliness of it. During the winter, I can go days without interacting with a single live human. It’s hard for me to get out of the house and I don’t have any friends in this area who could drop by and visit with me. Thank goodness I have cats. I don’t think I would have survived this long without their companionship.

I got crushed by a wave of depression as the days started getting colder and shorter a month ago, knowing that I was going to face another long, lonely winter. I’ve realized I really need to reevaluate how I communicate with the world. So I asked a couple of tweeps to Skype with me. And I’m going to try to reach out to my real world friends and do more than just Facebook updating. I’m trying to participate more in different online groups like twitter book clubs and movie clubs.  And my parents are going to try to visit me more often. I don’t know. It’s not a perfect system but I’m hopeful that with these strategies this winter will be better than last winter. Wow. That seems way too ambitious.

Let’s just say that because of Annie, today was a better day than yesterday. Today I remembered I was human.