I know it looks like I disappeared and fell off the edge of the planet. That’s not entirely false.
While April was a rough month, May was hell. I won’t bore you with the details, I’ll just say that while I still am not feeling completely like myself, I’m better than I have been. Maybe another day I’ll share the details of where I’ve been and what I’ve been doing, the battles I’ve been fighting. Today I’m here to say that I’m back and have some surprises in store.
One thing I like to focus on here is healing and self-care. These are daily battles for a spoonie and it’s important to me to share my path. Others may learn where I have failed, some may hopefully find help in my words. If nothing else, we’ll all see that we are none of us alone.
And sometimes, that’s all I need to know.
Too often lately, I’ve felt alone as I struggled with my disease. As the flares ebbed and flowed, I found myself disgruntled that so many people in my “real” life fail to understand how difficult this new life is for me. As misunderstanding and ignorance swirled around me, I grew angry and frustrated.
Thank goodness for my online friends and the spoonie community on Twitter.
A post from Crys reminded me that while we may battle different circumstances, the hurts are often the same. Tweets from people who may never know me showed me that I am never alone in this life. I am not the only one who struggles to explain my condition to well-meaning people who ask the wrong questions. I am not the only one who carries her cane with mixed shame and frustration, guarded against judging eyes and comments.
And I am not the only one who cries out in pain and desperation when a new symptom pops up.
A gloriously long chat with Dawnie reminded me that sometimes taking care of myself, both body and soul, can be the difference between a terrible day and an okay day. Care packages from her and Crys warmed my heart and stocked my life with bits and pieces to spoil myself in a multitude of ways. A sweet card from Tracie and her husband made me smile when I wanted to cry. A hand-drawn card from their daughter Katie made me bawl while grinning. They, and many others, have all been a huge part of my self-care this last month or so.
So I’ve asked a few of them to write posts for my space here. To talk about how they care for themselves, what self-care means to them, and maybe to share a few tips with my readers.
Because bottom line y’all, I can’t do this by myself. None of us can.
And we shouldn’t have to.