slowly learning

I'm 53 and still slowly learning what my body needs. Especially since becoming severely disabled. That was (of course) a game changer. I've always been the person in a group to take care of everyone else. The person who thought of everything and planned it all. The first to arrive and the last to leave. Well no longer. Now you can bring your own Excedrin because I travel light. 

Out with good friends.

I feel very proud of myself. We had company last weekend and I really listened to my body and what I needed. I let my husband plan everything start to finish. Some examples of changes I made are:

• I did Karaoke the first night. It was an energy stretch, but I rested before and ate healthy right before.
• I rested the next day at my usual time. I also had coconut water, a V8 and lots of regular water. Again, I chose healthy whole foods to eat.
• The third day I went to the gym and swam with my mom. Just went about my business while my husband hung out with our friends.

For me the gym has become non-negotiable. Just like a doctor's appointment. I feel so much stronger and healthier in general. My mom does too.

Day two. Out for veggie sushi with friends post-nap.

I'm also learning I have a lot less pain when I avoid sugar. Easier said than done.

If I stick with whole foods I feel my best.

Using my tools and researching new ones has also been vital. For example. I've been having killer heel and achilles pain for a while now. All the exercises to stretch it out were just making it worse. That's because it's not just achilles tendonitis. It's Insertional Achilles Tendinopathy. What a shocker. One of the causes is "muscle weakness" in the foot. Stretching will just make it worse and more irritated. I learned instead what I need is shoes that elevate my heel and point my toes down.

My first time at Karaoke. It was such fun.

I only have one pair of shoes like that. Flip flops that I nicked off my mom. But I ordered some inserts that I can put in any shoe I like. That should be really helpful. I'll also keep off it in the pool. No more stretching that foot or kicking off the side when I swim.

This is all literally the opposite of what my muscular neurologist told me to do. Sometimes the doctor doesn't know best. Right away I was feeling relief when I put on those flip flops. Now I need to break my habit of walking barefoot around the house. Dang.

Point is, I'm learning to trust my intuition. My inner voice. Myself. Learning from my mistakes and caring for me. Putting myself first over the discomfort or inconvenience of others. And that's no minor thing. 

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.