Onto The Next Phase

Life echos the rhythms of nature. Stagnation leaves growth impossible. Buddha says that attachment is the worse thing you can do. "Let go or be dragged." I love that saying. Nothing lasts forever. These beliefs help me savor each moment as it comes as well as embrace all new things that tickle my fancy.

My latest interest has been Yoga. Nothing has helped me with my strength and balance like Yoga. It also helps calm my mind. I've been taking a weekly class at my gym and just love it. I miss it if I don't get to do it. My teacher, Tish guides us through an hour of Vinyasa Yoga.    

I decided to create a specific Yoga/Art studio out of my spare room in my house. It has been serving as a guest room. I used to spend a lot of time in there on the bed with Max, watching TV while my husband was working from home in the main part of the house. But that was when I was very ill. Now I want a space to do art and move my body.

How the space looks now. Mostly just a big bed.

Getting ready for a change. Anyone need a big bed?

My Yoga mat and "gym drawers" are the most recent addition here.

Where my gym bag lives with some images to motivate me.

Along with space to move and a small table for art I'd also like to add a bar for stretching out. I find that very helpful at the gym. A ballet bar attached to the wall. And I scored a beautiful, free, lime green chair from a neighbor that will be tucked into a reading nook. No need for a TV in this room anymore.

As I change my home changes with me. I'll never understand people whose homes remain exactly the same like some kind of time capsule. I find it very uncomfortable. I like my home to echo my life and serve me and my goals, passions, needs.

I'm excited to get started on my room. Now I just need to get rid of that bed!!!!

What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

Fears

I had my eyes checked at the end of August and bought a pair of expensive glasses. Then a few weeks ago I needed more contact lenses, but my current prescription was feeling a tad weak. I went back to my eye doctor and he re-checked me. Within four months my eyes had changed a little for the worse. But that's not all...

I feel like I don't see quite as well as I used to when I'm driving. Especially at night. Part of mitochondrial disease is having compromised eye sight. That scares me.

I don't take any minute for granted with my muscles. Knowing that I still have mitochondrial dysfunction makes me fear a relapse. That I'll suddenly not be able to walk or use my muscles anymore.

Taking joy in my pottery with my cute new glasses

I combat these fears with fitness. Working out makes me aware of my body and its limits. I enjoy it. I miss it when I don't do it. I especially love Yoga. Which is a big surprise. I love how aware I am of my body when I do it. It has also helped me the most with my strength and flexibility. Being able to lift my arms above my head is a thrilling accomplishment and I feel I have Yoga to thank for it.

When I exercise it verifies what my body can do. What I'm capable of. Not what might happen in the future. Today I am strong and can still see. Yay!

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

Never enough FUN!

 My husband is away on an annual business trip. This is the first time in ages that I've been able to do things while he's gone (other than just survive.) I did a few surprise things to my home, decorated for the holidays and this...

Joker or cute??

I colored my hair a vivid purple. I went for a frosted silver first and it looked bad, so I said "screw it" and did it purple. I've never had purple hair before, so why not?

My thought is that it is FUN. My life can never have enough fun and I want my everything to reflect that. My home, my actions, my clothes and yes... my hair. Life is short and I plan on dancing, laughing and making everyone smile as much as I can on my way out.