Addicted

I've recently been trying to learn as much as I can about my disease. Science is an ever changing, ever evolving beast. Especially when it comes to mitochondrial functioning and its role in multiple disorders.

One thing that stood out to me was the emphasis on sleep. How getting a good night's sleep is vital to good immunity and mitochondrial health. To say I don't get good sleep is an understatement. But that's in big part due to my phone. It is glued to my hand from the time I hit the sheets till around 2AM. Not healthy at all.

She doesn't look like a siren, but she is!

So last night I decided I'm changing that bad habit. I made my bed all nice, turned off all of the lights. Even my little nightlight and closed my eyes to sleep.

The urge to pick up my phone was insane. Partly due to my ADD brain wanting to look things up, add something to my Target cart, or check in with people I don't even know. Damn. I am completely addicted and I didn't even realize it.

"You knowwwww you want to shop. I bet someone is having a saaaaaaale"

It felt exactly like when I left Facebook for good about eight years ago now. I deleted my account and that was that. I didn't notice how much it had tentacled into every facet of my life until I quit cold turkey. I felt a physical pull to get back on it that was terrifying. I had been so completely addicted to it and I didn't even know it.

The fact that last night was so incredibly hard for me and that I felt that same magnetic pull to get on my phone just validated that I did the right thing. And just like Facebook, I didn't realize that I was addicted. I thought it was a preference or something I enjoyed. Not that I would feel the loss like a tooth pulled.

"I bet that comment you left is up to 5K likes now. What's your friend in Australia doing? I bet she's up."

I stayed off of it and fell asleep after a restless 30-45 minutes. Not bad. And I slept very well. Hmmmm. Coincidence? 

Oh yes. I also read a real book for the first time in ages. Bridgerton. The first one. Saucy. I felt like someone from Little House on the Prairie. Laying in bed reading. Wow! What a novel idea. Something I did all the time before the iPhone. 

Substance

I watched the bizarre movie The Substance yesterday. Although I can say I absolutely hated the ending, I did like the political commentaries that it brough to light. 

The beautiful Demi Moore and very young Sarah Margaret Qualley in The Substance.

The invisibility of women as we age (a good thing in my opinion.) The pressure on women to keep looking as young as possible. The self hatred that our beauty based culture can inflict on women. The disgusting men everywhere, seemingly endless amounts of them, who objectify women. "Beautiful girls smile" leers one man to a young girl, trying to get her to smile. An experience I had in my youth more than once.

A powerful scene where Demi Moore wipes away the makeup she just spackled on.

I enjoyed how powerful and decisive the main character became as she aged. No spoilers here, but the movie dug through the old myth of the maiden, the mother and the crone in a unique way. 

As a crone myself I found that very empowering. To own your "crone-ness" and to hell with everything and everyone else. Men don't like us because we now know all their tricks. How vapid and lurid most of them are. Not all men of course, but that's the general vibe honestly. And when a man's partner turns into a crone I think he becomes a bit fearful. Not a bad thing. Keeps him on his toes.

Disability is another challenge that makes one invisible. Although those who do see us are shockingly helpful and friendly. I realized the other day as I used my wheelchair how much people try and go out of their way to be friendly to me. Not when I use my rollator strangely enough. Then maybe I'm just an "old woman" instead of a "disabled woman?" It feels strange to transition between these worlds at will. 

I'll be honest. I do miss my grey hair. I feel ready to embrace my crone-ness and start kicking some butt. 

Another eye infection

AGGGGGG!!!!

I woke up Friday morning with another small stye on my left eye. This time on the upper lid. I already had a televisit with my doctor scheduled to get some more Diamox for our upcoming vacation. So I let her know that I'm having recurring stye issues. She ordered me some prescription eye ointment. 

Two days later and it was looking much worse. So I did a Teledoc visit and he prescribed me some oral antibiotics. This morning it looked even worse.

I know I can be impatient with my body, but I'm really expecting it to look a little bit better by now. 

I can feel the swelling pressing on my sinuses and the back of my throat. The ear, eye, nose and throat really are connected. You have but to experience an issue with one to feel it in all the others. Luckily my ear is fine. Hahaha.

I've been doing hot patches, cold patches, gentle wash in the shower. Everything I can think of. Drinking lots of liquids, taking Ibuprophen for the pain. At least today it feels a bit less painful, even if the swelling is worse.

Since my last stye I have been:

• Changing my pillow cases weekly
• Not rubbing my face on my dog
• Washing my hands any time I touch my face (that I know of?)
• Washing my eyelids gently in the shower with baby shampoo
• Using clean towels every time on my face

I honestly can't think of what to do more? I just need to be super careful I guess. I'm suspecting it's wearing my contacts that could be a trigger. But my hands are always clean when I put them in or take them out. Maybe I'll start to wear them only on special occasions?

My poor hysterical body.

Any time there's an infection or a reaction my muscles also shut down. I am very physically weak right now. I'm also exhausted. So... tired... So I'm spending a lot of time resting. But I'm not convinced that laying flat down is what's best for my eye. It feels like everything needs gravity to drain?

What a mess I am.

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.

Remembering the Basics

I got into a situation the other day where I was foolishly without a mobility tool. Even now, when I think I'm doing so great health wise, I have to remember that the smallest thing can set me off. I've been struggling greatly with the weather causing migraines, which then triggers my mitochondria to focus all their energy on that. It leaves me weaker and even more tired than usual.

Standing is tough for me even when I'm at my best. Standing for a few minutes can be torture. 

We had taken our nephew to an art gallery's "comic book day." It didn't even occur to me that there would be standing involved. Why? Because I'm a perfectly healthy, able bodied person of course. So when the standing and looking at things started, I felt myself beginning to struggle. It got to the point where I was literally pouring sweat, shaking, trying to keep it together and stay with him and my husband.

Common sense finally got a grip and I went to sit down with my portable fan. Thank the Goddess that at least I brought that with me.

When assessing the situation later I realized I should have recognized the day would involve a lot of standing and brought along my rollator. I have the tools. I just need to remember when to use them.

So I came up with this lovely little reminder for myself.

• If I'm going on short walks and I'll experience mild fatigue (or already am) I'll bring my stick.
  
  
• If I'm going on longer walks with moderate fatigue (standing more than a few minutes involved) I'll bring my rollator.
  
  
• If I'm having severe fatigue or muscle pain I (or am expected to stand most of the day) I'll bring my travel wheelchair.

Even though I've been disabled for years now I can still forget the very basics.