Ok, I almost named this Dancing with Myself, after the Billy Idol song stuck in my head. But since that might sort of distort the type of things I usually write about, I chose the more innocent and truthful, Fighting with Myself.
Sorry if you sing Billy Idol in your head all day now.
So, an update....physically, life stinks. There's migraine pain, which is a given, fibro flares, endometriosis pain, some undiagnosed but not specific to fibro hand issues, and my husband has started a new job, and while I am SO pleased his stress level is back to "not gonna have a stroke any minute" levels, he's not working from home as often and I miss having him here. It's just comforting to know he's here, even if he's working and cursing his phone and computer and slow internet...
Thank goodness the dogs are my little cuddle bugs and keep me company when he's gone.
And, all this stinkiness is occuring at a horrible time. Politically, after our current President's election, I grieved a little, but within a week was standing with friends at a visibility event for Planned Parenthood. I got a kick of energy after the election. It was like my fight or flight systems were activated and all I could do was fight. I co-started our local Indivisible chapter. I began a PAC with some like-minded Progressives to change politics in Arkansas and especially my County, Faulkner Forward PAC.* I have been involved with the Citizen's First Congress, an advocacy group that reads lots of legislation--OMG, theres SO much legislation. Such a dance party was had by me (and I'm very certain tons of others) when this travesty of a session ended. We squeaked by with a few wins for public schools and kept healthcare as is at a state level, basically, until Congress may actually pass something someday that ruins it for all of us, but the losses were big, and likely to affect lots of lives. Then of course I've tried to stay involved with the Democratic Party and Democratic Women.
With rallies, Marches, almost daily direct citizen advocacy (talking to Members of Congress's offices about important policy things), leading new groups, wanting to see my husband as much as possible, and oh yeah, those seemingly weekly doc appointments, life got busy. Fast. Like, too much for anything but illness, politics, and my husband for months.
I learned a new skill! I have learned to say no to leadership opportunities even if I really want them. But that gets old. I feel I should be able to do it all. I feel the healthy version of me is out there somewhere, doing it all. I wish I could meet her. Hell, I wish I could be her.
During the election, my youngest nephew from a few hours away lived with us while attending school. I'm much more liberal than he was raised to be or has thus far decided to be. So it was interesting getting to have real, intense conversations with him, watching news and debates with him, and hearing each other's viewpoints. I'm not sure if I changed a vote or not with him, but I think it broadened the way he looks at issues, at least.
My brother's oldest child got to vote for the first time. He knew how important that was to me so he came home from school so I could be there for his first vote. That meant a lot. We had some pretty intense conversations about things and became closer because of it I think. I'd walk through fire for all my nephews and nieces. (Technically, I only have one niece. But I have cousins who are like nieces. They know who they are and they count!)
During this time, I don't know if it's medication or adrenalin, but something allowed me to function. My doctors were shocked at what all I was able to do and manage, in between migraines. I told someone I felt like I was running with all my might to get things done in between migraines, crashing a few days, then going again. It wasn't ideal. Life with migraine never is, but relatively, I was doing a lot of stuff and felt the sense of purpose and accomplishment I so need and desire to feel.
In reality, I probably just bit off more than I can chew and hid it really well until the exhaustion took over. I am a master at the basic "Oh, I'm Ok. Same old, Same old. Now, tell me about XYZ?", said with a mustered smile.
So, now, medication, adrenalin, fight or flight, whatever that energy was, is gone. Not working. In its place is a constant migraine, and fibro pains, and an almost unbearable fatigue. A dark fog of depression is settling in that makes me not want to move. I can get to a really dark and scary place when depression hits. I'm not there, but the weight and darkness of it, it's there.
So, I guess I just really wanted to vent a little. I feel a constant internal struggle to be better, do more, and accomplish things, but that is countered with pain, exhaustion, and a basic desire to never leave my house again. It's a struggle within and that all by itself is exhausting.
Ambition and migraines, or any chronic illness, for that matter, just don't mix.
My doctor and I have discussed using steroids as a preventive. Last time we discussed it, in late February, he wasn't ready to go there yet. I am. So ready. Like cut something off or do some major surgery ready. Just SOMETHING with a reasonable expectation of decreasing my pain and giving me a quality of life.
Depending on how much you know about long time steroid use, you may know that's a really big step. But, when I'm on steroids, I can tackle the world. So what if I'm losing eyesight in my 40s or having joints replaced at relatively early ages. Is it better to get the feeling of accomplishment I long for, or to languish in pain, fatigue, and depression instead?
And, btw, do you see how those things called "essential healthcare services" the Republicans so want to do away with really are essential even to relatively young folks with conditions deemed minor (like migraines) by the majority of people? I won't get into all of it, but if you want to know point by point, how me and millions like me could be affected by the proposed changes to our healthcare system, I don't mind the conversation.
At any rate, I don't know what all is going to happen. I'm trying essential oils, which is interesting just learning about, trying a new acupuncturist this week, hoping to start a different preventive soon, probably going to do a few Hyperbaric Oxygen Therapy Treatments. I did one and had some relative success with it, so it's worth exploring, I think. So yeah, other sick people will recognize this as the throw everything at it and hope something sticks approach.
As bad as I feel things are getting, I know I only have one way out. And that's through it. Whatever that means.
Thanks to all of you who hang with me as friends, partners, family, "colleagues" (do you have colleagues when you don't work? Well, I figure you know what I mean.) From one angle, at times I feel like a demolished, worthless human being. But then I think of you all who put up with me and seem to even love me anyway, and I feel pretty amazingly lucky.
*Shameless PAC plug: if you are interested in politics and want to see some of Arkansas least Progressive legislators replaced and especially want to see more Progressive women in elected office, please visit our website and donate today.