Bathtub Theory

The energy symptom of my condition can be hard to explain. Most people can understand what "progressive muscle weakness" involves, even though it's invisible. The more I use my muscles, the weaker they get. But energy is more complex to put into words. 

I like strong visuals, they help me to better understand non-visual concepts. There is the very popular "Spoon theory" that some people use to better comprehend the energy struggles of someone with a chronic illness. Though excellent, that theory doesn't quite explain my personal energy struggles correctly. So I came up with my own "Bathtub theory." Here's how it goes.

Overnight when I sleep my "bathtub" (body) is filled with energy (water.) You still with me? Pretty simple. When I wake up, I have a full bathtub. I have good energy and am ready for the day.

Here's where my mitochondrial disease kicks in.

The second I wake up, the drain is pulled and my energy starts to go.

When I do some activities the water pours out faster. For example. If I'm gardening or cleaning my house, it's a gush of water down the drain. I lose a lot of energy doing those things. If I'm a passenger in a car, then it's just normal draining. 

The only thing that stops the drain is sleep. It doesn't fill back up until the next night's rest. When I lay down and take a nap the plug goes back in to stop the water loss but that's it. My muscles may "refresh" but never my energy.

A healthy, able bodied person loses energy too of course. Their tub also starts to drain when they wake up. But here's where we differ. They can easily add more water by eating, having a cup of coffee, sitting down to relax, etc... All of these things will add more water to their tub. Nothing will actually ADD water to mine except for a solid night's sleep.

If I didn't have my medication and supplements I would start each day with maybe a quarter tub fill instead of a full tub. I suffer from chronic pain, but it's not as awful as it would be without my medication. I also sleep more soundly through the night with my drugs to help me. Both of these things take a lot of water if not kept in check.

To recap.

The second I wake up my full tub of energy starts to lose water. The plug is pulled. The water is draining continuously through the day, just at different rates. A nap will stop it draining, but not fill it back up again.

Knowing this about my body I try to weigh what is worth doing and what I can put off or modify so I don't lose as much water.

Life in 2020

My mother posed a question the other day. Only she didn't realize it was a question. She shared with me a collage that she made which stated "How we live now." Her statement of "How we live now" struck me and I asked myself "How am I living now? How has my life changed? How did the global distress of 2020 mold my life?" The answer came to me quickly. My creativity has blossomed. 

My mantra for 2020

graphic courtesy of my creative Mama

Here is a small sampling of how 2020 has encouraged my creativity to stretch and grow.

The pandemic hit California.

Each day all of us grows in our creativity. I love exploring new ways to create with my husband and mother. Artwork is always better when shared.

What I Can Control

There's so much about my body that I can't control. I have no say over my pain, migraines, dizziness, cramps, spasms, blurred vision, brain fog, fatigue... well... anything. There are some things that I can control however. One of them is my dental health.

No control

I have always been afraid of the dentist. I remember being very young and having a dentist literally lay his arm across my face as he worked on me. Another had the worst breath you can imagine that he breathed right on my face for what felt like hours as he inflicted nothing but pain. I thought intense pain was just part of the dental deal and all dentists were sick sadists.

As an older adult I finally found a good one. Though good dentists always seemed to hire evil hygienists who were awful. So it was common for me to go years and years with no dental care. 

I swore 2020 would be my year to get caught up on my dental care. I had finally found a good dentist who had been gentle with my son, so I thought I might be in ok hands. 

Let's Go!

Luckily I was right about the new dentist and everything went well. I'm now all caught up and can just keep up with my cleanings instead of needing expensive, painful work done. And he made sure it didn't hurt! YAY! I met my goal of catching up on my dental care this year and I feel really proud about that.

Now I'm on a roll and am working on getting a whiter smile with just those white strips you can buy. I like my fangs and crooked smile, but want them to be nice and clean looking. That's something I can fix and control.

Little Pleasures

Little pleasures pack a big punch and mean a lot to me.

I used to find pleasure in good grades, a helpful session with a client, a big vacation... big moments. Sure little moments were nice too, but they were often overshadowed by bigger expectations.

One of the gifts I now have is that ability to find pure bliss in the smallest thing. A perfect dandelion on a walk. Free plants found to nurture back to health. A morning cuddle with my man. Petting my soft dog. All of these make me feel as happy as I felt eating seafood in Dublin Ireland. 

But it's more than that. These series of small moments weave together to form the tapestry of my happy life. They feel like little shooting stars in the night sky bringing a surprise of pleasure to my day. I feel fortunate not just to have them, but to see them. They were always there, but often I was too focused on the bigger joys to really soak them in. Staring so hard at the planets if you will that I missed the magic of the stars.

When I learned to relax my tight grip on expectations, my future and even the day, I started to enjoy my treasures even more. Sinking into my soft bed to rest. Snuggling with my stuffed shark. The warm water as I take a long shower. I'm incredibly lucky to have too many of these moments to count. 

November Neurology

I saw my muscular neurologist last week. These appointments are always infrequent and stressful. It's stressful because I know it will involve a lot of testing. This one was no exception. For this visit I tried something new. I drew out an image of my body and what my current issues of concern are. I also made a list and sent it to her ahead of time.

They all shared that the drawing was very helpful. The resident suggested I start a comic strip with her as the main character. That gave me a chuckle.

The clinic had a new Pulmonologist who I really liked. She was very thorough and tested for things I hadn't been tested for before.

She said that I would benefit from a device called a "Cough Assist" and that my lung muscles were testing a little low. Given the lung issues I have that feels about right to me. I'm not too excited about a lung machine, but I'm trying to keep an open mind.

My neurologist chastised me for putting off my sleep study. I rolled my eyes and ordered it after our appointment. -sigh- 

The resident spent way more time with me than my neurologist. He asked me of all my pain what is the worst. I told him my lower back. They both agreed they want me to try physical therapy and if that doesn't help I'll go to the pain clinic for possible injections. I'm glad they listened and offered solutions.

All of this left me completely exhausted and my chest hurt for two days. 

The appointment reminded me that:

• No one knows what's going on better than me.
• No one knows what's going on if I don't tell them or show them.
• Only my symptoms can be controlled, not the cause.
• Doctors care about what's the WORST, not everything wrong.
• Some of my symptoms are scary, persistent and nothing can be done to help.
• Being sick is a lonely experience.

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 

When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 

Plan Kick Ass - The Revenge!

I've talked in the past about my addiction to food. It has been a huge comfort this last year that I haven't been able to work. I've also tried different versions of what I like to call "Plan Kick Ass." In short PKA is always my attempt to regain control over my eating and diet. I'm not even including "health" in there because I honestly feel I'm as "healthy" as I can be. 

It's my enlarged fat cells that are the issue currently. My scale reached an all time high last week and I didn't like it. Since I can't exercise much the only way to change that situation is by intake. But there lies the trouble. I LOVE FOOD!!!

But there are things I love more than food:

• Art and making art
  
  
• Talking with family and spending time with them
  
  
• Snuggling with my husband
  
  
• A good TV show like Brit Box's Miss Marple series
  
  
• Walking my puppy
  
  
• Playing with my jewelry (a la' Elizebeth Taylor style)
  
  
• Sipping coco or coffee under soft blankets (especially if it's raining outside)
  
  
• Watching a movie with my Mama at her house

I bet there's even more than that! That's just off the top of my head. So why make food my number one? Because it's easy, something I have to do anyway and always there. But I'm working on it.