Magic

If I was told 3 magic beans would improve my quality of life I would buy them and eat them. Move over Jack.

Every time I try something new, start a new regimen or try a new medication, I am hopeful. I am an optimistic person by nature. It shines through with regards to my disability. Each and every time it gets me. "Maybe this will be the one. The one that gives me my life back." Not even a "part" of my life. But my WHOLE life.

I love this image and I wish I knew who to credit it to.

"It may turn me into a marathon runner. Leave me migraine and head pain free. Give me back 100% of my body, pain free. Turn me into a sex maniac for my husband. Give me the energy of a 20 year old." Do you think my expectations are maybe a tad bit unrealistic? NEVER!

 Me in Ireland - 2016  

When we last went to Hawaii I actually thought I could do everything we had on our agenda. No questions asked. I really believed I could snorkel in the the morning, hit a museum in the afternoon and go out to a lovely dinner at night. All with just my rollator (if I even needed THAT I scoffed.) Want to guess how that went? I think it's the most I've cried on any vacation ever. Let's leave it at that.

Aloha from the hotel bed

But that didn't stop me from hoping.

I think part of it is the strangeness of my disease and the fact that sometimes something really will make a huge improvement. Or at least it happened once. When I changed my diet to short chain fatty acid. That was the most remarkable improvement I've ever made. It did indeed feel magical. I went from using my chair every time we left the house (and needing a wheelchair van) to walking on my own everywhere without even a cane or rollator. Remarkable. 

August 2023. Right before I started the short chain fatty acid diet

My doctors didn't know what to think. It was Genetics that found out I had an issue processioning long chain fatty acids. The funny thing is most people do. It just doesn't seem to affect them as much as it does me. It also affects people with Autism, though my son would never do anything about it. He thinks whisky is a health food. And who knows? Maybe it is? 

 My biggest magic trick. Walking again. August 13, 2023

When I was craving sugar and carb while battling it out with Lamotragine (for seizures) I thought maybe I just need a lot of sugar? I think that's true when I'm ill or in a muscle crash. I don't think it's true daily. I tried out a glucose tablet and it just gave me a bad headache.

I still have that "magical thinking" whenever a new issue is discovered. "Maybe I was having seizures the whole time and now that I'm on anti-seizure medication I'll be 'fixed!" Or "Maybe it was migraines and now that I'm on Botox I'll be 'fixed!" I swear I do this constantly.

But the truth I really need to embrace (yes, after all this time) is that I'm disabled. Severely so. I have a mitochondrial disorder. It is slowly progressive and degenerative. I survived a brain tumor. Both things impact me in a huge way. There is no silver bullet or magical bean that will remove those two facts. I require certain things to thrive. 

Pottery, creating things, spending as much time as I can with friends and family (both furry and non-furry.) Rest, rest, rest. Healthy foods, my medications (14 pills in the morning, 10 in the afternoon and 11 at night.) My medical team helping me stay at my baseline or better. Love. New clothes, HAH! All of these help me to thrive.

Time with my family always helps keep my spirits high 
and the gratitude flowing. 

I have good hills and bad dips. Just like anyone. I have happy days and miserable. I have days where I have extra energy to get a lot accomplished (like today.) And days where I just have to stay in bed. I miss gaps of time every day to rest. So my time is very precious.

My life just as it is feels magical most days. I'm full of gratitude for what I DO have and try not to think about what I lost. Things aren't "worse" just "different."

 

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.