Reflecting on 2022

This year felt much less dramatic than last. That's not a bad thing. I feel more settled. In my body and in my life. Routines came easy. I was very much "in the moment" the majority of the time. 

• I saw a lot of fantastic, beautiful animals at two zoos. Even made friends with a snow leopard!
• Spent a lot of time with family.
• Swam my little mermaid brains out.
  
  
  
• Completed physical therapy and learned skills to help with pain.
• Got to touch the ocean (more than once.)
  
  
  
• Saw some beautiful artwork at a museum.
• Learned how to make my own art with clay.
• Spent hundreds of hours with my amazing little dog who makes me laugh every day.
• Cooked, baked, grew flowers and food for my family.
• Hugged my Papa in person.
• Got a new wheelchair.
• Colored my hair PINK!
  
  
  
• Entered a short story and poetry contest.
• Saw stunning images of outer space.
• Learned lots of new things.

I just had my first two appointments at the pain clinic. I'm hoping to learn some new tools and get some support for my chronic pain. 

In 2023 I'm hoping...

To meet some more people struggling with similar symptoms to me. I feel like that's an important part of what's missing in my life right now.

I'm also still working on being gentle with myself. Not having crazy expectations. Doing what I'm able to do and not kicking myself for what I can't do.

Lastly I want to get back to a more gentle way of eating that reflects my ethics. I'm going to reduce my dairy. I also want to give up eating mammals. That still leaves me plenty of protein between seafood and chicken. I just don't feel good about eating animals given how much I love them. But I still require more protein than a simple vegetarian diet can offer.

Here's to a beautiful, hopeful 2023.

Showing Up

My Mom likes to say that "Life is all about showing up." To me what that means is I need to make the effort to put myself out there as much as I possibly can. As much as I physically can. 

"Chat" bike ride at night

Although life happens at home, in my pajamas, declining party invitations. It also happens at the party in my nice new dress. It happens when I say "Yes" and engage in life outside just as much as inside. 

Humans are social creatures. We need to be around other people. That's why COVID was so impossible for so many people. Isolation. Being chronically ill limits how much I can be out in the world. It also limits what I can still do since COVID is still very much alive and contagious.

Coffee with Mom in her festive home

Sometimes "showing up" can look like entering a poetry contest from home or encouraging someone on Instagram. Other times it can look like spending my Mom's birthday at the zoo or having coffee at her house. To me engaging is simply making an effort. Not letting my pain and illness take over me and keep me in solitude. 

Enjoying Zebra at the Zoo

Thanks to my family and friends I have near constant engagement and many ways in which to "show up."

Max cuddle

Finding my Limits

My husband is away on a business trip and I felt a huge urge to cook last night. I had all the ingredients to make some things that I didn't think sounded very difficult. It felt within my wheelhouse. It didn't go great.

I managed to finish off what I had started, but only out of sheer stubbornness. I didn't know where my boundaries were when it came to cooking, but I sure found out the hard way. 

It was the first time I could feel my energy failing mid-work. I could feel myself getting more and more fatigued. And I'm not talking just my muscles. That feeling I'm used to. This was something new. 

It was a slow energy drain. Like a bucket full of water that has a leak. I could feel myself getting more and more tired with each thing I did. Even just standing looking at what was cooking. It was honestly a terrifying feeling. 

I felt scared that I wouldn't be able to finish before I had to go lay down. Frightened that I bit off more than my body could chew. Shocked that such a small thing could drain me so quickly. Regretful at my decision to cook so much and not just wait for my Mom to help me. And sad for myself that I was having that experience.

The whole thing wasn't all bad though. I don't know my limits if I don't test them. I also won't understand what's going on with my body if I don't pay attention. To have that very real feeling of my energy draining rapidly due to being overloaded, as scary as it was, is also helpful. My disease isn't just all about my muscles.

I told my husband the other day that I wondered if my need to rest mid way through the day is due to my doing so much when I'm awake. Especially physical things like showering, dressing, putting things in the house away, etc. I walked a touch over a mile yesterday just by doing these things. That's quite a bit for me.

The tricky thing about my "limits" is that they are constantly changing. What I can do today I have no guarantee of being able to do tomorrow. So that makes me feel in a bit of a panicked rush. I have a constant feeling of pressure to do everything that I can today because it might be the last time I can do it ever.

(I wanted to take a picture of some food that got dropped on the floor as I was cooking, but I didn't want my dog to get it so I hurriedly cleaned it up instead. I always tell my husband "It's not a day with me unless I drop something.")

What I Would Tell Myself

I've been on this journey for a while.

Being disabled.

Being chronically ill.

How far back do I go?

Where to begin "counting."

2 Years since migraine treatment began.

4 Years since brain surgery (2018).

4 Years since my first wheelchair.

5 Years since my first myopathy symptom (2017).

7 years since Tuberculosis (2015).

I think seven years is the start. 

It was that diagnosis and the treatment that followed. Nine months of intense antibiotics to try and rid me of TB symptoms. That was the catalyst. If I could send a letter to myself seven years ago. When the vertigo started and I couldn't drive. When my legs gave out on me and I crashed into a bookcase. When I cried hysterically in the hospital parking lot, terrified of what was happening to my body. What help would I offer myself?

I would tell myself...

"You're going to be ok. You're doing everything right. You will find fantastic doctors who will help you make sense of all of this. Go slow. Rest as much as you can. You will discover a 'new normal' with each stage you go through. You are incredibly resilient and so are those around you. Reach out for help when you need it. You're doing great by using mobility tools. None of this could have been predicted. You'll be surprised by how strong you are. Many people will help you through this."

What a journey it has been.
And I know there's more to come.
The only thing constant is change. -Heraclitus

2015

Where it all began

TB diagnosis

2015
Working out as much as I can

2015

9 Months of TB drugs

2015
TB treatment is at an end

2016 

Back for my last year of grad school

2017

Back to work

2017

Fatigue is starting to kick in

2017

Neuropathy starts

2017

Graduation from Masters Program

2017

Muscles feel weak and "funny" on vacation

2018
Wrongly diagnosed with Rheumatoid Arthritis

Feeling weak and tired

Working full time

2018
Ask for disabled parking due to weakness
I start using a walking stick

2018
I start using electric shopping carts

2018

I start using a rollator

because I need to sit periodically when out

2018

I keep feeling worse

I'm missing work

It's all very scary

Finally diagnosed with Mitochondrial Myopathy

2018
We buy our first wheelchair

a small transport chair

2018
I'm diagnosed with a brain tumor

2018
Going under for a craniotomy

2018

YAY! I didn't die and the tumor was benign

2018

My first big wheelchair

2018

We buy a travel electric wheelchair

2018

My first outing in an electric wheelchair

2019

Business trip to Hawaii

I'm still working full time

2019

Leg biopsy for myopathy

2019

I go down to part time work

2019

I stop working

I also start needing mandatory rest periods during the day

2019

My mom changes her plans and moves around the corner

2019

I'm finding my way

2020

We buy our wheelchair van

More testing happens, mostly to find my baseline

2020

Covid hits just as my medical team is coming together

2020

Swimming saves the day

2020

I developed migraines from my brain surgery

Botox is a lifesaver

2020

All the major fires are horrible for air quality

2020

I have my medications and supplements pretty dialed in

2020

My team checks on me frequently

2021

I have lots of love and family support

2021

My muscles continue their decline

I'm fit for a neck brace for extra support

2022

I start Amantadine and it helps a lot

2022

I go through Physical Therapy

for my neck pain and stiffness

2022

I go off Amantadine, relapse and find a new hobby

Pottery

2022

The pool is still a helpful escape

2022

I decide to keep my hair super short

due to decreasing arm strength

2022

I get assessed for a new wheelchair

PINK this time

2022

My migraines are stable with Botox

and Amivog injections

2022 - Today

I rest between 2-3 hours a day

Typically from 2-5pm

I spend a lot of time with Max

I'm with my Mom about 3 days a week. She makes me lunch.

My man has stepped in and stepped up. He does a ton around the house.

I no longer drive or can work for money.

I use my chair anytime I'm outside our home.

We're currently modifying our house to make it more wheelchair friendly.