Settling In

It's 2024 and I'd say I'm settling in nicely. I have two beautiful, funny dogs now who make my life so fun. I have my mobility back. I have my son out of my mom's house and working hard to be an independent adult. I have pottery studio 2-3 times a month. I'm loving Apple Fitness with it's Yoga, stretching and Meditation. I'm also trying to sell our wheelchair van.

My near future plans include taking some online courses to get my license back and become a supervisor in my profession.

Going for a hike

Doing more art

Checking out a close gym's yoga class

I'm still more fatigued than I was before all this happened to me. Which is to be expected. But when I'm awake my energy is hugely improved. I can do multiple things in a day which I never could do before. And drive. I can't under-state how great it is to be able to drive myself again. -WHEW!-

I feel like things are going very well for me. I'm spending time with friends and family. Living my life and thriving, not just surviving.

Margo

Max

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.

"I've Got a Golden Tiiiiicket!"

Five years and four months.
314 Blog posts.
And...
IT HAS A NAME!

I have... (drum roll please)

LCHAD (deficiency)
Long-chain L-3 hydroxyacyl-CoA dehydrogenase

Say that ten times fast.

I'm so excited because once you know exactly what a thing is. What's wrong with me. Then it can be treated. I'm incredibly fortunate because I can treat my genetic mutation with just diet. As long as I avoid long-chain fatty acid foods, I have energy! This is incredible. I feel like Charlie Bucket who just found a golden ticket in that bar of chocolate. Except I can't eat most chocolate.

I need to avoid as much fat in my diet as possible. Except for (strangely enough) grass fed butter and all sheep and goat cheese. Those are all short-chain. Well technically the FOOD isn't a short-chain fatty acid itself, but that's what it produces in your gut. It's all very science-y and complex. Point is I can eat it. 

Celebratory mani-pedi day with my Mama

As you can imagine all my friends and family are over the moon for me. I just walked a mile and a half this morning at our local nature center with my husband. And WOW! Losing weight sure is easier when you can actually MOVE. (Who knew?)

I told my husband that I'm gobsmacked how much brain space it takes to just move around and exist in the world as a disabled person. "Can I fit through here, am I going to knock this over, will this make me too tired, will I get stuck?" I know this covers many disabilities and size differences. To have to give up sacred brain space to such basic ways of existing is awful. Or as my grandfather likes to say. "It's disgusting."

Just being able to go for a walk and not think about those things with my body is liberating. 

That's the word for it. I feel LIBERATED!
Liberate: To set free from restraint or bondage.
Yes. That's the word.

I've been eating this diet for over a month now. I'm completely off my muscle relaxer Baclofen, I was taking it three times a day. I'm eager to see how many of my medications I will no longer need, but I'm trying to take things slow. Not my nature, but I'm trying.

I'm also looking at joining a gym. There's been an issue with my mom's pool at her community and we're on the hunt for a new one. All of my new energy has to be put to good use somewhere. Meanwhile, Max is reaping all the benefits.

September 2023

September 2022

Surviving or Thriving

My husband and I have been checking in with each other asking if we are "surviving or thriving" on any given day. Recently I have learned that I answer "thriving" on days where I have been exceptionally social. This is shocking news to me.

I've always consider myself an introvert and that being with others drains me instead of charges my batteries (gives me spoons, fills my tank, gives me energy...) But what if I'm wrong? What if I actually thrive being with other people more often than I know?

Honestly I think like most things it depends on the people. If I'm with high energy people I thrive. If I'm with low energy people I might drain more quickly. Being empathetic I'm pretty sure this is the case. I mirror the energy of the people I'm with.

Recently I was able to spend time with some very high energy friends and I felt overwhelmed with joy. I savored every second of it.

I also got my nose re-pierced! So that's big news.

Thriving

What is the difference between surviving and thriving? 

I asked myself today "Am I going day to day surviving? Or am I thriving?" The answer is complicated.

First I turned to the all knowing oracle of our times. Google. I think it's fun to ask deep questions and see what pops up. Much like a Magic 8 Ball. "Oooooooh all knowing Google. What lies at the depths of this question..." (((SHAKE SHAKE)))

Surprisingly Google had a good answer. Or make that Empowerwomen.org had a good answer. Although one I don't 100% agree with. "Surviving is doing what is necessary to live." I agree with that part. "A thriving mindset is defined by continually challenging oneself." I'm not sure about that.

To me personally the big difference isn't in challenging myself, but in growth. Surviving is making it from one day to the next intact. I for sure have my survival days. I know I'm not alone. I think of all the people across the world who are simply surviving right now.

However, Like Viktor Frankl I believe it is possible to thrive in any condition, no matter how hard, oppressive and awful. Most days I feel like I am thriving. I'm continually attempting to better myself. Better my health, my mind, my attitude, my relationships with loved ones, my body, my home... Thriving to me personally is a continual growing process into a better and better Antoinette. 

A kinder me who is as healthy as I can be, softer with my words, respectful of others, spending my time on important things, giving people (and pooches) my love, actively listening to others... all of these are things that make me feel like I thrive.

It doesn't have to be travel or a paycheck. I don't have to save lives or run a marathon. I just have to do my best and be my best. I am growing, flourishing, expanding into my own human potential. And I feel like most days I am thriving.