I crashed. Hard. Thankfully, I have insurance. Unfortunately, I get so tired of being my own advocate. I can not pinpoint what triggered this one but it has been bad, really bad. Today, Thursday, is the first day this week that I’ve not been predominately bed-bound. The other days I’ve woken up with migraines, swollen lymph nodes, unrelenting pressure on my face and unspeakable fatigue. I have refrained from ALL exercising and the proof is in the pudding of my ass. Strangely, my ass and other body parts have not gotten smaller as a result of little food and a near vegetative state. I have these great leggings formerly known as running pants and now known as secret jammies for public.
Meanwhile, I’ve felt neglectful as a mom. My daughter, only 12, has taken a swift turn toward adolescence and has distanced her self from me significantly. She has always been very independent, but now it’s as if she genuinely dislikes me. I imagine this is a tough time for any parent, sick or well. I find it especially hard because, before I got sick, I KNEW that I was a good mom. I felt secure and confident in this role. Now, however, I can’t help but feeling somehow to blame. She’s gotten in some minor trouble in school for the first time ever and I wonder if it’s because of my lack of vigilance. Even though it is not my fault, being sick on bed for days feels like a form of neglect (like an addict mom or one with too many boyfriends).
I know that I should ignore the guilt and that I shouldn’t care about what anyone thinks, but it’s hard. Once I was generally well-liked and active in the community and now I am the flake. When I’m sick and in a fog, it’s as if I don’t exist even within myself. I lose time and my memory. I am on a volunteer theatre sewing committee and just got reprimanded for not reading all the way through an email. I didn’t defend myself and tell her that I was wrong and she was right because I don’t recall EVER reading ANY of the email! I pretended that i had overlooked it and apologized. Its just easier that way, but the email? Gone. Poof! Nothing. Sorry, sorry, sorry, sorry, sorry. That’s me. Thats ME.
It’s a beautiful day today. Warm but not hot, birds having parties, big sun, green grass and blossoming everything. I guess I should continue going to Stanford. There’s really nowhere else to go and I do believe they are the closest to understanding this cunning and evasive thug of a disease.
Sometimes, I do further research on the internet, hoping to find some connection, the connection, but last time I just read that those with ME have an abbreviated life span and more likely to develop non-Hodgkin lymphoma (part of the immune system, so no surprise) and die prematurely from heart disease. Well, please understand, that my mood will lift in time, but for right now I wish there was something, ANYTHING that might give me and millions of others our lives back.
I wouldn’t wish this on Trump! WOOOPs, did I say that? Sorry, I don’t remember.