My Brain Is Back!

It's not just my muscle strength, stamina and energy that have returned to me. I can also feel my mind becoming sharper each day. This is very exciting to me because it means I can go back to work at some point. I gave up a career that I loved when I could no longer focus or retain what was being said to me. My short term memory and recall were both terribly impacted by my mitochondrial disease. Both are vital to my work.

I also had physical coordination issues that made working on the computer for any prolonged period a serious challenge. Then there was the fatigue. Sorry, that makes it not sound so bad. I mean FATIGUE! The worst of the lot. Actually they all suck. There is no winner here, just me losing all my faculties.

I could tell when I was recently able to play games again that I was starting to recover. Then when I was able to win a few... well... I can't even express how thrilling that was. And not just because I'm competitive. It meant that my brain was getting back online.

Now that I reflect I'm astonished at how well my body ran during that time when I was so terribly ill. How my brain and body worked at all? I think it was just sheer stubbornness and will on my part. Of course I wouldn't feel up to playing games. I could barely function.

The longer I'm at the gym the kinder I feel towards my body and the miracle that is me. I've been through so much physically and mentally. No wonder COVID had a minimal impact on me mentally. I was already in my own hellish war. Now I'm working my way back to health. Trying to shake damaging eating patterns. Attempting to nurture myself inside and out. I feel so incredibly lucky that my brain didn't check out completely and I can feel everything coming back online.

My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.

Finding A Rhythm

It has been a month now since my mom and I joined a gym together. We've been going regularly four days a week. That's a lot for bodies that up to now have only been in the pool with water weights. I say "only" but girl we slayyyyyyed in that pool! 

It still feels so strange to be able to do "normal" activities WALKING!

We're game for a change and tried most of their classes together. I was able to go back to doing zumba (HUGE YAY!) My big love from before I became disabled. My mom found out she loves water zumba. We are women who love to dance. 

I have discovered that right now I can really commit to three days a week. Monday, Wednesday and Friday. I need some recovery time and time to walk. I'm still working on my walking muscles too. Our gym has a fantastic track that goes through the second story. It reminds me of the train ride at Disneyland that takes you through all the lands. I can see the pool below me, see people behind glass taking a fitness class, others doing machines and weights. That makes it fun. 

But nothing beats walking this love bundle...

Max has been left at home while I'm at the gym. He was home when I would swim before, but it feels like a longer amount of time now (even though it's not). Most of the time he's not even alone. My husband works from home all but two days a week. We're talking about getting him a little sister next year. We'll see. Pets are expensive no matter how small they are.

In the meantime I'm finding my new rhythm knowing even this phase won't last forever. I'm just here, doing my best, enjoying each moment at it comes.

Hello Body! Nice to Meet You!

This is the third week my mother and I have been going to our new gym. We have been trying to go five days a week and making it four. Something always seems to come up once a week. So far that "something" has been me feeling ill.

When we joined the gym we were give two free sessions with one of their trainers. That's pretty typical for around here. My guy was great. He's a pro boxer very into fitness. I told him my story and he was amazed. Then he had me do 60 squats. 

Punching things is FUN!

I had on my knee brace to help support my larger, painful knee. So I thought all was good and I could do anything he told me to with zero problems. It went down a bit like this. We spent a lovely 45 minutes together with him taking me from machine to machine lifting between 40-20lbs. I pushed myself HARD and did it all. I was even rewarded with him declaring me "feisty" when I tried to jump the gun on a few seconds of rest to do more. That's my nature. I push. 

Also... I like impressing people. I enjoy finding my limits physically. And as I told him. "It feels good to have some pain that I'm causing. Not that's happening TO me and that I have no control over." The results? Basically my body heard me say that and went "You like pain lady? Here's some pain for you!" 

Uh oh. I over did it BIG TIME! I mean "want to scream just trying to sit down on the toilet" level of over doing it. 

At first I felt mad at the trainer for pushing me so hard. I mean, he SHOULD have known better, right? Wrong. The person who pushed so hard was me. I was the one who should have known better. I should have been listening to those pain signals and realized I was going to be in a world of trouble if I didn't reign it in. It's my body. It's me.

Not even the hot tub could save me from this poor choice.

In my defence, I'm still getting to know... well... me! And I'm naturally "feisty" and a limit pusher. I tend to go in whole hog, then pull back later. That's just my nature. I'm not a "dip my toe in the water" type of person. Hence that often leading to injury.

So here I am two days later still in a lot of pain. Last night before bed I took: 1 prescription muscle relaxer, 3 Ibuprophen, 2 Acetaminophen and when that didn't work finally a CBD/THC gummy. Then I was able to get to sleep. Lesson learned. I want to/need to get used to pulling back and listening more to my body signals. 

Fifth Brain Surgery Anniversary

Five years ago today I had a craniotomy for a benign mengianoma. In English... I had brain surgery for a non-cancerous brain tumor. It was growing in the left side of my brain just above my ear. The surgery was very long, but everything went as good as it could go. I documented it here.

I celebrated by spending the morning at the gym...

I work out for 2 hours almost every day.

Some kind of cardio for an hour, then swim for an hour.

Then I came home and had a delicious veggie burger. The patty was "mushroom risotto." Very unusual but so good. I ate it with the last of my sweet and spicy pickles. Fermented foods are important for me to have.

When I got home Max and I ran some errands. He's my best boy. I carried him in his sling through the grocery store, but he got to walk and explore through the hardware store. What a lucky dog.

"Go faster mom!"

Now I'm finally relaxing with a nice glass of Kombucha. It feels good to be off my feet. 

I like to remember where I was five years ago to make sure I savor each and every day. I'm grateful to be here. Thankful I can walk. Delighting in shaping my body to be strong.

CHEERS!

A Second Teenage-hood

Remembering back to when I was a teenager, this time in my life doesn't feel all that different. I'm not talking about the pimples and stress. But the discovery phase of everything feeling new and exciting. Who do I want to be? What do I want to look like? What are my tastes? What tools do I need for the life I want and for who I am NOW?

The person I was two months ago could not be any different from the person I am today. I am full of energy and ready for an adventure at all times. Strangely enough, my style has also changed.

I shaved my head yesterday. #3 all over. I love it.
Going back to my natural color.

I've always been incredibly organized, but now I feel I'm even more so. The tingling of modernism aesthetics is pulling at my maximalist style. The "bohemian a la mode" that I've loved for so long is going by the wayside to be replaced by Ikea cleanliness. White is my new favorite color for my house (it was orange and teal.) I find myself wanting to purge most of my belongings and start over fresh.

My local Goodwill must be thrilled with all the donations they've been getting from me. Including my BiPap and Cough Assist machines. I have my old blue electric wheelchair up for sale on Ebay, but may just end up donating that as well. I'm keeping my new chair and the wheelchair van for now. 

I'm humored that I most needed to buy good walking shoes along with more bras. I stopped wearing bras 99% of the time when I was so sick because they took way too much energy to take on and off. Then obviously my shoes didn't matter much since I used my chair any time I left the house. Now I need a lot of support for the weaker muscles in my feet. And I actually want to wear a bra. I'm enjoying having this time to explore. It is a real luxury.

"Look at me. I am the captain now."

The other day I realized that I am once again the captain of my life. For so many years I slipped behind my illness, too weak to have autonomy or do very much on my own. My illness dictated...

• What I wore: Lose clothes that were easy to put on and take off. No bra. That was too much work. Or sometimes just wearing pajamas all day.
• Who took me places: I couldn't drive myself anywhere anymore and I relied on others completely.
• What I ate: I couldn't cook very much and preparing food was draining. I'd have easy gluten free options. Mostly I'd eat what my husband and mother would purchase and cook. 
• When I did things: I was always on other people's clock's. And I'd have a huge nap around 1-2PM, so that would cut into my day in a major way.

My illness even controlled my love life. There was no part of me untouched by my mitochondrial disease. But now...

Now it's all so fresh and new. I have the energy to wear whatever I want. I can drive myself to the store AND cook a meal myself. I can bathe, dress and put on some makeup if I want to, when I want to. These all sound like such small, basic things. Each one, each experience, is something I had been robbed of these last five years.

I also now have opinions. I get to have even more of a "say" in my day-to-day. For example, my sweet mother who loves to cook offered to bring snacks and food for us to the gym when we go. Instead I told her I wanted to do my own food. I love her food, but I missed that autonomy and the simple act of caring for myself through food. 

Suddenly I am the captain now. I'm back in control of my time, body and life. I still have mitochondrial disease. Just now it's more of a passenger rather than the captain.