Walking the Walk

It has been thrilling feeling my body become more used to walking. With each adventure I can feel myself become stronger. I want to go further and off on dirt trails to see places I couldn't see before. The whole world is a shiny new toy that I yearn to explore.

BUT...

All these new movements also came with a side gift. A bladder infection. ACK! When I was first using my wheelchair a lot I had a bladder infection. My body wasn't used to sitting so much. Well, now she's not used to moving so much. I am a complex compound of beneficial bacteria working in harmony. But it doesn't take much for my body to be completely thrown off.

I'm guessing my 2 mile walk yesterday wasn't the best idea. But remember what I said about yearning to explore? Yeah... that happened. Today I'm sitting next to Max getting some non-physical work done.

Getting The Hang of This

Today marks four weeks since I received the big news about my genetic mutation. I met with my wonderful primary care doctor (who is sadly retiring) last week. He thought it was so amazing that I could have both a protein mutation and an enzyme mutation. I don't make COQ10 on my own and I can't process any long-chain fatty acid foods.

Lucky for me I can take COQ10 as a supplement and change my diet. These four weeks have gone by very quickly. It has been "All hands on deck" for my mom, my husband and myself. We are learning as much as we can about all foods. It's very hard to find pre-made food that fit the bill. Eating whole foods while out, or making it ourselves is the best way to go.

From pasta sauce to crackers, long-chain fatty acids are everywhere. I'm very fortunate to have extra eyes reading labels for me. I thought I had found a good oat milk for my coffee, but it turns out I was wrong. Then my mom found this.

Just oats, no oils.

I'm so happy this happened during summer while I have gobs of fresh fruit and vegetables at my fingertips. This has been my "go to" for lunch lately. So scrumptious! Fresh bread that my husband makes for me, local goat cheese with fresh pepper, roasted chicken breast, delicious juicy tomatoes topped with lavender sea salt. I feel very advantaged to have access to this food.

Those sweet and spicy pickles are addictive.

I feel like I'm really getting the hang of eating this way. I don't feel like I'm missing out at all.

My walking is going very well. I still feel a bit gangly and not quite like I used to when I walk. But it hasn't been very long. I know those muscles will take time to go back to the way they used to be. I'm having patience with myself (something being disabled has taught me.)

Eating out takes a little tweaking. Mexican is pretty safe as long as the beans have no lard. I haven't had any problems so far. I also do a lot of research before hand when we eat out, so I know just what I'm ordering. 

My mom took this picture of me the other day and it perfectly captures how I'm feeling. Like I've been re-born. Given another chance at a strong healthy life. I crave physical activity now and I want to keep it that way.

Superhero

I know I have mitochondrial disease. That hasn't gone away. Despite what I said last time I'm not "cured." I'm "recovered." However I do feel a bit like a superhero. It's shocking to me how strong I am now with little effort. Today I moved a lot of furniture around. Yes, I broke a sweat but I think it was less of a sweat then when I would try to make dinner before.

Whenever I do something easily that before would have been impossible for me to do, I feel like a superhero. You know those scenes in the movie where the person just got their powers and don't know how strong they are. They lift up a couch to vacuum under it. That's what it feels like. 

Being able to do things on my own again is huge. When I was disabled I was very dependent on other people for most things. It feels fantastic to have that independence and freedom back. It's quite a powerful sensation.

I'm consistently walking 2+ miles a day.
AMAZING!!!

Whiplash

I'm slowly coming around to the reality that I am no longer disabled. It has been hard to wrap my mind around becoming re-abled so suddenly. As suddenly as I became disabled. My whole world just shifted on its axis. Nothing seems impossible anymore. 

I've always agreed that food is medicine. But I never imagined a diet change could literally cure me. I'm still stunned by that fact. I AM CURED. Literally. I can walk, dance, climb. I don't need my wheelchair anymore. The world is open to me once more.

Tracking my progress with my Fitbit.
Keeping encouraged with my new bracelet "You've got this."

I still get sleepy in the afternoon sometimes. It has only been three weeks (today). Who knows what other changes are ahead of me. 

My neurologist was surprised and happy for me. She agreed that I can do a Baclofen taper. That's the first drug I want to see if I can live without. These medications make me foggy headed and I'm hoping I can either live without them, or with a much smaller dose.

I wish it wasn't so horribly hot out. I want to be celebrating out in nature! Not stuck in the house. 

Luckily I can (and am) still swim. There's always the pool.

I'm not feeling deprived at all with the delicious food options.

I feel restless. Eager to do new things. To explore. I feel like a little kid kept inside on a rainy day. Errrrr. I want to go outside and play.

Best Day Ever

I told my husband that I wanted to walk at our local Arboretum to see how far I could go. I expected I would make it a few feet to the first bench before I needed a rest. I honestly had no real expectations. Just curiosity.

You must keep in mind when reading this that just 18 days ago I needed my electric wheelchair any time I left the house. I also needed my cane to walk from my mom's car to the swimming pool for our swim time. It wasn't uncommon even then to see me hobbling as I walked.

I walked a mile before I needed to sit down and take a break.

Astonishing! I was gobsmacked. There's no other word for it. I had only been walking without my stick for two days. I walked around our block twice and that felt hard. This felt much easier. It felt like I was adjusting to my body.

My outer thighs still felt the burn, but weren't in pain. Nothing cramped and I didn't break a sweat till I started going up and down stairs and down a huge grassy slope. I felt like a new car going off-road to see what I could handle. I was "test-driving" my new body. I succeeded at everything I put myself to and more.

I can't believe that I walked a shocking mile and a half this morning. My husband, family and friends were also amazed. It's a miracle. I don't know what else to call it. The fact that I could recover THAT quickly is just... well... A miracle.

Feelings About Being "Re-Abled"

Going from being severely disabled to suddenly able bodied again has been a whiplash experience. I'm "RE-ABLED!" A term I just made up. 

So what's it like being re-abled? Wonderful, scary, thrilling, terrifying... I have so many thoughts and feelings about what happened and is happening to me. Thankfully I also have a place to vent and record these shocking events.

Part of me feels like an alien who was just given a human body. I have to figure out how far I can walk, how to coordinate my movements. It's an odd sensation. I literally tell myself "keep your back straight, keep even weight on each leg, don't take too big a stride, don't forget to breathe." It's like when you're on vacation and you drive a rental car for the first time. It's familiar and yet not all at once.

Speaking of driving, I also started doing that again this week. It felt wonderful, empowering and a bit scary. "What if I hit someone? What if I slam on the break?" I have had quite a noisy head this week.

My fears mostly stem from two thoughts. "What if this all goes away?" And "What are my limits?"

I've had a recurring dream the whole time I've been disabled where I'm running, soaring, jumping and walking really far, then suddenly I can't do it anymore and I don't have my wheelchair or any other mobility aide with me. I'm crawling across the floor (or down stairs) trying to get help while my muscles systematically shut down. It's not a good dream.

That dream is in my mind as I walk around my block with my husband and my puppy. With each step I take I'm very aware of the two thoughts "I'm doing it!" And "Will it last?"

My muscles also are not used to walking. Even thought I've been swimming all summer that tones up very different muscles. I feel very heavy and awkward on land. My hips, thighs and lower back all hurt when I walk. It feels like they just aren't used to it and need to be built up. So I'm torn between being so excited and wanting to walk everywhere and not wanting to "over do it" and end up with an injury. (I'm still recovering from bursitis.)

All of these things feel like waking up from a coma. They're all activities I used to do, but haven't done in five+ years. I love the freedom and that makes me incredibly happy and excited. I feel nothing but love and encouragement from those around me.

Now my wheelchair is starting to look like an un-used treadmill. Covered in clothes. Meanwhile I'm out walking and driving. WOW!

The first week of the rest of my life

The first day of the rest of my life. The first hour, minute, second. Right this moment is the only moment that will ever be. Knowing that makes it easier for me to make this moment count. Who do I want to be right now? My answer is someone strong, resilient, who learns from the past. Someone who knows what I want my future to look like. At least a little bit. A future I prefer… how’s that?

In my future I would like to be healthy. I would love to get to sell my wheelchair van and my wheelchairs. I would be giddy if I could have enough energy and strength to walk. So in the present moment I’m going to do everything I can to give that possible outcome a chance.

Since July 26^th I have been eating to set myself up for success. Tons of fruits, vegetables, whole grains and beans. A little feta and goat cheese here and there. Lean chicken breast and oat milk in my coffee. I’ve also cut down my portion sizes to what is supposed to be “single serving” or close to it.

I’m very happy to share that I’ve been feeling much more energetic. I woke up at 7:30AM this morning. Something unheard of before. And Friday not only was I able to be out all day, but I didn’t take an afternoon rest.

When I have been resting it has been much shorter too. Yesterday was only an hour.

I’m feeling a bit clearer headed. My physical stamina feels vastly improved. I’m doing  a lot more that’s physical during the day. I’m also still gently pushing myself.

I’m excited and hopeful each second that I’m able to feel good. My pain in general is less, I think due to swimming a minimum of three days a week.

I’m so happy to have had some potential answers and to have the strength to make these good choices for myself. No pizza on the planet tastes as good as walking feels.