Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

From six wheels to two

Eight months ago I was using six wheels. My beautiful Permobil pink wheelchair and I owned the streets. She got me from A to B in style and speed. Topping out at 7mph she was ahead of her class. Now she is parked in my garage, lovingly draped in my favorite shower curtain (occasionally holding laundry for me to pay attention to.)

I love this picture my mom took of me last year.

I now have two wheels. My stunning new Lectric bike tops out at 20mph. I've only taken her 15 because I'm a big scaredy cat. Even though I always wear a helmet.

Shopping online, but I bought her in person at a REAL brick and mortar store.

My first day out.

I wanted an electric bike since I became mobile again. I originally thought I would get a three wheel trike. It turns out when I went to test ride them I hated it. I felt much less unstable on three wheels then I did on two. Maybe it's because I used to be a recreational bike rider, so it is what I was used to? It's amazing how muscle memory really works. 

Test rides were important for me.
My first time on her!

I feel so fortunate to be able to ride a bike again. My bike not only helps you pedal as much as you need, but you can also ride it like a moped with just the throttle engaged. So if I ride it somewhere and get too tired I can just sit there and cruise.

I feel like I'm 10 again when I get on it. So free. My next purchase will be a rainbow pinwheel for my handlebars. Don't be surprised if you hear me zoom past you house yelling "Wheeeeeee!!!"

Marking the Occasion

My mom asked me today how I feel when I look at old pictures of me using my wheelchair. Well... "old" being anything older than three months ago. It is an excellent question. I feel many things. Shock at how ill I was. Pride that I still fought to have a slice of rich life. Empathy for myself and what I went through. Sadness that I struggled so much. Fear about a relapse. Joy at being able bodied again. Many mixed emotions.

I said I felt that I barely registered COVID when it happened. I had already been traumatized about air born diseases after contracting tuberculosis. That was scary. But during COVID I was just struggling to bathe and get dressed. Worry about COVID was energy I didn't really have. I let others worry for me.

But now I am able bodied. And getting stronger every day.

I'm a huge "commemorator." I felt this need to commemorate this time in my life. 

I've always loved mermaids and felt that I secretly am one. I adore all water and was an absolute fish as a kid. I lived in the pool every single summer. So when I became disabled I would joke that it's just my body finally transforming into a real mermaid. So what better way to honor surviving the last few years?

I bought myself this sterling and aquamarine mermaid ring a few weeks ago off Etsy. I can't wait for it to come. I love that she's not naked with her titties hanging there. You'd be surprised how much mermaid stuff is tacky like that. I like that there's two. One for the past and one for the future. The mermaid I was and the mermaid I am yet to be. Stronger than ever.

Five Years Later...

Sometimes I like to go back in my blog and see what was happening five years ago that month. In November 2018 I purchased my first wheelchair and received my first accurate diagnosis of Metabolic Myopathy. It feels more like ten or 20 years ago. 

The world was without Covid. I was still working full time. My mother was still living in England (not right around the corner.) Life was incredibly different.

Right now I have the luxury of time. I'm able to spend the bulk of my time rebuilding my body. I often feel like the bionic woman. Remember her?

I'm being re-built one trip to the gym at a time.

Five years ago my body was changing in ways that terrified me. Now I'm changing in ways that are thrilling. I see my muscles getting stronger. Change I can actually see! Daily! Change that I'm causing by my actions, not that I'm a victim of. It feels amazing.

A Second Teenage-hood

Remembering back to when I was a teenager, this time in my life doesn't feel all that different. I'm not talking about the pimples and stress. But the discovery phase of everything feeling new and exciting. Who do I want to be? What do I want to look like? What are my tastes? What tools do I need for the life I want and for who I am NOW?

The person I was two months ago could not be any different from the person I am today. I am full of energy and ready for an adventure at all times. Strangely enough, my style has also changed.

I shaved my head yesterday. #3 all over. I love it.
Going back to my natural color.

I've always been incredibly organized, but now I feel I'm even more so. The tingling of modernism aesthetics is pulling at my maximalist style. The "bohemian a la mode" that I've loved for so long is going by the wayside to be replaced by Ikea cleanliness. White is my new favorite color for my house (it was orange and teal.) I find myself wanting to purge most of my belongings and start over fresh.

My local Goodwill must be thrilled with all the donations they've been getting from me. Including my BiPap and Cough Assist machines. I have my old blue electric wheelchair up for sale on Ebay, but may just end up donating that as well. I'm keeping my new chair and the wheelchair van for now. 

I'm humored that I most needed to buy good walking shoes along with more bras. I stopped wearing bras 99% of the time when I was so sick because they took way too much energy to take on and off. Then obviously my shoes didn't matter much since I used my chair any time I left the house. Now I need a lot of support for the weaker muscles in my feet. And I actually want to wear a bra. I'm enjoying having this time to explore. It is a real luxury.

Meet Evangeline!

Introducing my newest wheelchair "Evangeline!" She and I have gotten off to a rocky start. She was given to me (thank you health insurance) the week of Christmas 2022. I've had her six months, but she and I are only just now getting along.

What happened?

I'll tell you all about it.

See... she is FANCY. I was intimidated the second I sat on her. She can move in any and all directions from zero gravity to six feet in the air. Working her controls feels like you're working a forklift. She's very complex.

She also doesn't like rough terrain. She likes smooth, even pavement. No grass, dirt, mulch, rocks, tips or anything other than flat and hard. Honestly I think she was made for Las Vegas or shopping. She's not an adventure girl. She's your Jimmy Chu shoes.

Then there was the error code.

Any time I tried to use her lift or tilt features I would get a flashing error code. I have had her serviced five times already and a part replaced once. Another part is on the way to be replaced as I type. She's a finicky Swede. Yes. She's made in Sweden. 

It's like a car. The more complicated it is the more that can go wrong.

Then there was the incident that happened on vacation.

I thought I could roll down a very steep, slightly slanted driveway and be ok. I was not ok. Evangeline locked her tires and I slid down the driveway and into the street. Luckily there were no cars at the time, but I did throw off a touring group of bikers and made one tip over. She doesn't like uneven surfaces. FLAT! FLAT GROUND ONLY!

My repair guy said "yeah. There's no way you were going to make that. Maybe next time circle back and avoid doing that." Thanks dude. Super helpful.

So she and I have had a challenging relationship.

However...

She's also really amazing. And pretty. And comfortable. She can adjust to me in any way. And I love the lift function (when it works). I always get comments and questions. Most people haven't seen a chair that could lift up as it's still a pretty new feature.

I just had to learn to get comfortable driving her and she had to be adjusted quite a bit to fit my needs. I think we're almost there. And I always have Dory for adventures.

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.