"I Don't Do ENOUGH!"

I tell myself lies.

I've always been a very busy person. Handy with my house, working, making money, enjoying others and volunteering in my community. Not to mention supporting family and friends. All of that changed dramatically when I became ill. It's something I still struggle with. That feeling of "I don't do enough." Or "I can still do that." Both lies I tell myself.

Thank goodness both my mother and my husband disagree with that statement. In fact they remind me to pull back when I need to. Which is often.

Right now we're having our bathroom remodeled and it has killed me not to do any of it myself. I did it in the past and I remember myself being very physical. But that isn't my truth right now. Now I need to conserve my energy. Now if I did something like paint a door I would be in incredible pain for days. In fact the very last time I painted in 2017 I was in incredibly pain. Looking back I think that was the very start of my issues.

My mom helps with my dogs ALL the time.

I remember being a bit dizzy on the ladder and my hands cramping so bad. Neither had happened before. At the time, both my husband and myself chalked it up to "getting older." I don't think that was the issue.

Now I don't work in an office and I don't volunteer in my community. Most days I feel like all I can do is prepare food, keep myself clean and do some small chores around the house. Some days I feel ok, other days I feel awful. I never, ever feel "good." Just levels of bad. 

So the lie that I tell myself that I "Don't do enough" couldn't be more wrong. I push myself every single day. I could very easily just not get out of bed. But I have relationships, help friends, get out in my community, walk my dogs (when I can) and try to take care of myself and those I love. 

I'm doing plenty.

Getting my eyes checked the other day.

Medical appointments keep me pretty busy.

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

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.

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.