That Sweet Spot

I think I found the sweet spot. I made this venn diagram the other day and it really inspired me. Something clicked in my brain and I've been doing a very good job taking care of my body and making smart choices for myself. Even my cravings have diminished substantially.

 

I really spent time thinking about how my previous big successes could help me make smarter choices for my body and health. Where could they overlap and how could it help me. This was what I found that I need to thrive.

Support: From my family and friends. Everyone to know what I'm trying to accomplish and to check in with me regularly about it. 

My mom and I at our gym post-swim. 
#winning & twinning!

Example: For me to serve as an example to others. I do very well when I have people who look up to me. It's not an ego thing at all. It inspires me to want to do better. I feel more accountable.

Tools: I need the proper tools to thrive. Gym membership. Pool access. Water weights. Swim suit. Trolley to keep all my gym stuff in. Healthy foods that I can plan around.

Smoothie making going on up in here

Goals: I do well with both long term and short term goals. Like my big goal is to weigh 200lbs. But my goal this month was to get under 280 (goal already hit!) My goal this week is to lost 2lbs. My goal every week is to swim 3 days.

Small Steps: This not only applies to exercise, but to eating as well. I tell myself "What's the best choice I can make right in this moment. For this one meal, snack, right now." Then I do it again and again and again. Small pebbles can make a mountain. One grain of sand can make a beach.  

Plan: I can't accomplish anything if I don't have a plan. Meal plans, workout plans, weekend and weekday plans. I do best when I have a concrete plan and then I can modify as I need around it. With no plan I sink quickly and revert to ingrained habits that have been formed over a very long period of time. I'm looking at you Taco Bell.

Rewards: A little something just for me now and then keeps me motivated. Non food rewards of course. Even a small thing like a face mask or lipstick makes me feel good about my hard won battles and new neuro pathways that I've created. It keeps me going. 

This stunning constellation monstera was a little treat for myself. 

Doing it for myself:  I can't accomplish anything if I'm doing it for other people. It took me a while to get to that point when I was quitting smoking. Which is why it wasn't working at first. But when I decided to stop trying to do it for other people and to just do it for myself it clicked. Same with school. At first I was doing it just to get a job. But when I switched and did it for a career that I really wanted it clicked and I flourished. With health I can't lose weight for a trip or a big event. It has to be "just for me."

Patience: I'm AWFUL at being patient. It's one of my big weaknesses. But all of my successes have come with patience. I can't force myself to be successful and accomplish something no more than you can force a flower to bloom or a tree to grow. I can give myself the proper environment and tools for achieving my goals, but I have to just wait to get there. 

Failure is ok: It's through our mistakes that we learn. I firmly believe that. I have made every mistake you can make while trying to do what's best for my body. Setback after setback. And that's ok. I'm allowed to start over and over and over. A lot of life is like that. It's never too late to keep trying (unless you're dead.) And thank goodness I'm not quite there yet. 

 

Willpower my ass

So here's the thing. I have always had very good willpower as an adult. I achieved three college degrees in about ten years despite my ADD, contracting TB and taking my license examination during the beginning of COVID with a migraine in a wheelchair. I have willpower.

So why is having willpower with food so hard?

Addictions are different than other "accomplishment" based achievements in my experience. I once quit smoking and it was incredibly hard. I also "failed" many times before being able to stop for good. Now if I have even a drag I get an asthma attack and headache right away. It's almost like my body became allergic to them.

Staying in school was also very hard. There were many many times I doubted I could do it. When I became ill it was an even larger challenge. But I knew the finish line was close.

That's the thing. I usually do my best when there are small steps along the way. Read this book, ace this test, excel at that class, graduate and move up. Repeat till goal is reached. Fully licensed with Masters in counseling psychology. Goal achieved!

Why can't I do the same with weight loss?
Hit the gym today to work out in the pool with weights. Go back three days a week. Lose 5lbs. Repeat. Maybe because I also have to watch what I eat, when I eat, how much I eat. On top of working out? Hmmmm. But the goals are still small and (pun intended) digestible. 

I tried making a weight loss chart before with small goals and dates. That didn't work before. Tried portion control cups and plates. Naaaah. Prepared meals delivered to your door. Too expensive and not for us. Vegan, Vegetarian, Mediterranean, Atkins, high carb, low carb, no carb, pills, shots... You get the idea. So far nothing has really "clicked" for me.

Even my health wasn't the best motivator. My cravings and not so great habits are very strong. My addiction is very strong. I need to re-wire my brain and how I think about food. Fuel not food.  

I also do better when I'm accomplishing hard things with other people. A workout class, swim partner (my momma), making healthy food with my husband... Even better if I'm the best at it or an inspiration to others. Hello ego! I didn't see you hiding there. Even in school I would have "school friends" to go through classes or semesters with. 

Like school I just need to find a pattern. A key to what works for me beyond willpower. Because I don't see that as my main issue. I just don't think I've found what works for me yet. But I'm confident that I will. 

Patients Helping Patients

I belong to a Mitochondrial Support Group on Facebook. Honestly being able to message my son (he only uses "Messenger") and this group are the only reason I even have a Facebook account. "Mito Cafe: Support For Adults With Mitochondrial Disease." Where would I be without you?

I don't check in very often. But when I do I always find that I'm able to either help someone, or receive help myself.

New people to the site are always scared and overwhelmed. I totally understand. This disease is scary and overwhelming. Things can change or happen so quickly. I feel like I have no control over my body or health. It is very helpful to read about others in the exact same situation.

This was an interaction I had today that is very common. I feel very happy to be able to help others going through similar difficulties. 

Lizette O'Neill it really is terrible. I'm so glad you've found a good one. Can I ask what they do to help u with treatment? I shouldn't have gotten this far deteriorating like this... I'm so upset.

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Lizette O'Neill

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It is very upsetting. I hear you. This is so hard.

I take a "mito cocktail" of supplements like most people here. COQ10 was a big game changer for me. I take 300mg of it 3x a day. Another very helpful treatment for me was Amantadine. It's meant for Parkinson Disease, but it helps me a lot with muscle pain and tremors. Then I take Lyrica and Cymbalta for pain and neuropathy (I have it all in my arms and legs.) The last thing that has hugely helped my energy is I take Nicotinamide Riboside 300mg. I learned that for this site. Someone said they were taking it and it helped them with energy. It helped me right away.

So yeah... a lot of pills. I've had all kinds of tests. A genetic test I recently had suggested I may not process "long chain fatty acid" foods properly. When I cut them all out of my life I was able to walk again and no longer use my wheelchair. That's pretty amazing.

Its taken me about six years to figure out what works for me. Even though we all have Mito we're all very different. I hope you find some help very quickly.

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!

Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

Support Group

 

I'm starting a support group in my community...

(Click to make bigger!)

For years now I've been trying to find the kind of support group I felt like I needed. Only to realize that it doesn't exist. At least not anywhere around me. Exhausted from looking I decided I'm starting one. Women only (because men tend to take up more space both verbally and emotionally.) 18+ So that we all have more in common.

It is my hope that we can form a community where we can share and support each other in our huge struggle. 

I am a licensed Marriage and Family Therapist, but this group is free. While you wait for our monthly gathering you can poke around my blog to learn more about me. Yes, Max will also be joining me. I look forward to meeting YOU!

“This event is not sponsored by Yolo County Library and the presence of this group in the meeting room does not constitute Yolo County Library’s endorsement of the policies or beliefs of this group.”

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.