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Happy Easter 2023!

Happy Easter everyone!

I don’t have anything profound to say today, I’m sort of still asleep and not feeling well. But I will be alone today in my room, in my bed while my family gathers to celebrate bunnies and Jesus. My Niece dyed Easter eggs with my mother last week and they're going to do an Easter egg hunt and have dinner at my sister’s house with both families there. I barely know my sister’s husband and have never met his family. And they have been married for years and have 2 children. I’m sure I will love them when I get to meet them all some day, but ME/CFS has kept me from being a part of my sister’s life and extending my family in that way. All that love and connection that could be a part of my life is just not there. My Niece still feels shy around me because she hardly ever gets to see me and, well, i’m weird. I have all these weird tubes coming out of me and only wear boxers and can’t talk to fill the silence or make her laugh like I normally would. I understand, I would be shy too, but it’s sad for me because she is so amazing and I love her so much. She is learning how to make a heart shape with her hands like I do which is precious.

There is a lot of communal love from ME/CFS patients and I feel that today. I am reaching out to all of you with open arms and open hands and an open heart and embracing our isolation together. None of us, no matter how sick we are - none of us are alone. If you start feeling desparate remember how many thousands or millions of people are isolated and alone today just like you. Looking out the window just like you. Picturing their family celebrating just like you are. Maybe hearing them celebrating but unable to be a part of the joyful noise. Wishing you could be held and feel that love from your family directly in person. Not knowing what your purpose is as you lie alone in bed or on a couch or in a big comfy chair.

We are all doing this together today. And we can all send out love to each other. I love all of you so much and can feel the love that all of you send back to me. This gives me meaning and purpose. To help all of you and be helped by all of you. As one.

I will spend the rest of the day sleeping a bit more hopefully and then following my normal routine with no changes. Taking the same medications, doing the same things, getting the same food pumped into my stomach, and the same saline dripped into my veins. I will feel lonely but I will shift my thoughts to all of you and think of the people in this community that I love and care about. And I will know that I am never alone.

You are never alone. I love you all. Happy Easter from bed you beautiful babies!



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