I’m still not feeling well these days. The pain in my stomach has been worse than pre-February 2019 for awhile now. And I feel achy, sluggish and “off.” I dragged my ass out of bed yesterday to attend the last improv class of the session. I already missed half the classes! UGH that annoys the heck out of me. So not my style to commit to a class and then miss that much. But that’s my life now.
I put up a photo of myself with my class members on Instagram and realized people will be so confused! How can I feel so awful and still go to a class? I guess I have to more clear about how this all works:
I can attend something even when I feel like complete dog shit. I mean, there are definitely times that there is no way in hell I can get out of the house - either due to fatigue, stomach pain and/or being stuck in the bathroom. But I didn’t eat much on Sunday which meant I didn’t have as much concern with stomach issues last night.
Essentially I have to decide how to use my “spoons” - something I don’t think I’ve explained on Facebook yet. Able bodied have let’s say 30 spoons a day. They can use spoons, they have extra spoons, they don’t have to think much about it.
But medically fragile / disabled have limited spoons. I go by spoons per week. I’ve always been more of a “eat by the week” type person. In my old life, I’d eat very little for a couple of days and then eat a couple of big meals.
Now, I have to decide: how will I use my spoons? I’m still terrible at judging what I can get away with. My brain makes all kinds of plans and then my body is like yeah right bitch.
I was struggling to get out of bed yesterday (and felt the same today when I had to go upstairs to print a form) - so I took this photo.
Many days, I feel 100 years old. My body hurts. What does that mean? It feels super heavy and achy. It could be that I still have flu symptoms going on - I’m hoping that’s the case. I’ve never wished that I still have the flu! But I do now! If this is how I feel all the time, I don’t know…I really don’t. I realized I’m averaging only 12 eggs per week. PER WEEK!!!!!!!! Fuck. I haven’t had fish since January. I don’t know how I can live this life if I feel as sluggish and shitty as I have lately.
I need avocados. Can’t forget that! It’s like 30% of my calories and it’s tricky to have the right ones that are ripe for each day.
The mental labor that goes into getting through each day has been especially taxing recently. It’s been SO freaking awesome having more help managing all my appointments and the doctor hunt. But it means I need to stay on top of correspondence. This is a good thing. I’m terrible at correspondence these days. I used to LOVE writing emails. I’d whip through a whole bunch each day without a second thought.
Now, the thought of even opening email sounds exhausting. I write people. THEN THEY WRITE ME BACK. OMG. The scariest part is that if they don’t write back, I forget we were even corresponding and miss business things all the time. It makes me nervous how little motivation I have to get basic tasks done. It doesn’t help that my cognitive function is so limited. I like writing here daily so much because it helps me organize my thoughts and feelings. How AM I feeling today? How AM I doing today?
Writing here allows me to check in with myself and process whatever bullshit is going on. It’s been good for me. I still am not motivated to share it though. Not sure why but I’m doing whatever feels right for me.
I was so happy in improv class last night - damn, I actually LAUGHED. So I signed up for it again. I am going to do the intro class again so my friends won’t be in it. But this way, I get to meet new people and also visit with them after class if I’m feeling up for it.
It’s extraordinary to me how resilient the body is. How little food I can give to it, how many hits it can take, and it keeps going.
My dad isn’t doing well. He had a clot in his leg a couple of weeks ago. The last few days, he’s had a terrible cough. My mom has very good intuition (as do I - this is in large part how we keep ourselves alive - when one of us has a bad feeling, we address it) and felt like he should have his lungs checked. Given that he had lung surgery a few months ago and is 74 years old, I thought that was a prudent idea.
Nope. Three different doctors blew her off. They listened to his lungs and said they were fine. (WHY IS THERE NOT ONE DOCTOR IN MY FAMILY???) They’ve done the same thing to me. I was having some sort of wheezing / asthma attack and they listened to my lungs with that stupid stethoscope and said “you’re fine.” I’m like dude that is the like the crudest method of checking a patient EVER, how can you verify your findings through that ancient invention?
Well, turns out she was right! Shocker. He has fluid in his lungs. He was coughing so bad, she took him to the ER last night. The wait was THREE HOURS so they left and came home. I insisted that they go into ER if his symptoms worsen last night. Thankfully, he did all right and will get the fluid drained today. My goodness there is not a boring day in the Negrin family.
I’m at the point where I’m proud of the fact that I’ve taken care of myself all these years. It sucks to rely on community but that’s kind of the deal as a human. I just didn’t think I’d be so young. I figured I’d have more time.
That’s always the feeling now. I feel like I should have more time. That I shouldn’t feel like it’s such a struggle to get out of bed. That going to a 2 hour class shouldn’t be SUCH a big deal. My time and energy are so precious these days. I need to be so judicious with it. I’ve been so high energy for so many years, I’ve flung my energy around casually without thought.
Now, I have to think it all the way through: do I have energy to stop at the store? Should I ask someone to pick up my prescription? I hate having to ask for so many things. It’s so tortuous for me as a codependent and fiercely independent person.
So now at the age of 47, I have to learn how to ask people to help me and take care of me. Thankfully, it’s becoming easier to receive. I just don’t have a choice.
I definitely won’t make it if I continue trying to do everything myself.
I have to drive to a new location today. I never used to get nervous to do something so basic! Now, everything makes me nervous. Social situations. New doctor appointments. I’m afraid they’ll be mean to me at the ER. I live in a constant state of anxiety. Who will be kind? Who will not?
The world has always been a hard place. But being cruel, impatient and rude seems to be more acceptable than ever. And being cruel, impatient and rude to a sick person? People don’t think twice. When a car lets me in a lane, I’m shocked by the consideration. The roads reflect it all. People drive like lunatics now, aggressive and self-serving. I already hate driving so you put me on the roads with a nervous mind that isn’t working that well, and I wonder how I get anywhere safely.
I got lost leaving my class last night! I drove in circles in the industrial section of the city, late at night. I used to never get lost. I had to use my GPS to JUST GET HOME. In my old life, you could tell me a long list of directions - VERBALLY - in a city I barely knew and I wouldn’t even have to write it down. I would see the list of directions in mind. I remember doing this even in LA.
Now, I can barely read research information, let alone retain it, let alone piece it together with other information so that it makes sense. It scares me so much. My inability to work on my own medical case. Makes me feel so vulnerable.
Time to get in the car! Don’t you feel so safe knowing I’m on the roads? I also need new glasses - have I mentioned that…? Not a high priority so it doesn’t happen. This is what happens when you’re medically fragile - the small things start to get harder and harder to get done. Until I’m sitting in a messy room and a pile of papers that need organizing. I missed my appointment with my 2-hour per week assistant because of the stupid ER so now I’m extra behind.
Looks like a couple people signed up to help me with that stuff on my helper list. Once we get this in a groove, it will be AMAZING. Just need to get there. My friend that’s been helping me might have cancer! I couldn’t believe it when she told me. She is such a doll - what a wonderful human being. I hate that she has to even wait for biopsy results. The whole thing is so dang stressful.
At least it’s beautiful outside! I’m determined to be outside for 30 minutes today. I don’t do well when I don’t get any outside time. It’s one reason I loved New York - even in the winter, I was always walking outside. Living downtown in San Diego was awesome. I went on a walk outside no matter how shitty I felt. It helps my mood so much. But the gray, rainy winters here in Seattle….
Time for some sunshine!