First Time

Monday was the first time in about eight years that I drove a fair distance. I took my son to the beach town of Sausalito, about a 90 minute drive from our home.

Growing up my son and I would take trips together frequently during the summer. My husband was always working hard to support us and so I could stay home and be a full time parent. That meant it was usually just the two of us during school brakes. We even drove to Los Angeles together, about 7 hours from our house. 

I always enjoyed these day trips with my son. We were adventure buddies and built great memories. 

Now he is 31, but he also lives very close, doesn't have a partner and doesn't drive. He doesn't leave town unless we take him somewhere. We try and do that a few times a year and he always enjoys it. But it isn't the same as it just being the two of us.

That's why Monday was so special. I was giddy to be able to be so physical. We hiked the blustery beach, walked to an old military bunker, and climbed some steep, old, cement stairs. Things I could never even imagine doing a few months ago. Bodies are so amazing. Our ability to heal and recover. 

I feel so alive right now. Like each moment is a juicy peach and I'm just savoring all I can. Each second I'm able to walk, bike, run, swim, climb is an enormous gift. One I never thought I would be able to enjoy again. I have gratitude and love in my heart to the universe for its magical, unpredictable ways.

Fears

I had my eyes checked at the end of August and bought a pair of expensive glasses. Then a few weeks ago I needed more contact lenses, but my current prescription was feeling a tad weak. I went back to my eye doctor and he re-checked me. Within four months my eyes had changed a little for the worse. But that's not all...

I feel like I don't see quite as well as I used to when I'm driving. Especially at night. Part of mitochondrial disease is having compromised eye sight. That scares me.

I don't take any minute for granted with my muscles. Knowing that I still have mitochondrial dysfunction makes me fear a relapse. That I'll suddenly not be able to walk or use my muscles anymore.

Taking joy in my pottery with my cute new glasses

I combat these fears with fitness. Working out makes me aware of my body and its limits. I enjoy it. I miss it when I don't do it. I especially love Yoga. Which is a big surprise. I love how aware I am of my body when I do it. It has also helped me the most with my strength and flexibility. Being able to lift my arms above my head is a thrilling accomplishment and I feel I have Yoga to thank for it.

When I exercise it verifies what my body can do. What I'm capable of. Not what might happen in the future. Today I am strong and can still see. Yay!

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!

Decision

I made a decision today. It's one I've been mulling over for a few weeks. One of the major side effects of the Plaquenil that I'm experiencing is muscle fatigue. It's making "being out in the world" a challenge. I'm hoping it will be gone soon, but in the meantime it's really impacting my life. The decision I made was to ask my doctor for help. I asked for a temporary "Handicapped Parking Plaque."

The fatigue started about two weeks ago, but feels to be getting progressively worse. I have a message into my rheumatologist about it, but I also told her when it started. She didn't seem concerned. 

Not only do my leg muscles tire very fast, but the bottom of my feet hurt for no reason and tire super fast. This makes walking not pleasant. Most of the time it's not a problem as I live in a pretty small town. But it has already come up where my husband had to drop me off closer to where we were going because of parking and my not being able to walk really far without my muscles literally giving out.

The back of my mind is holding onto a fear that this is just a new part of the RA that I haven't experienced yet and actually NOT a side effect from the Plaquenil. But I find that unlikely. 

In the meantime I feel grateful to have an understanding doctor who wants to do what he can to help me. His response when I messaged him to ask was perfect. He simply said that he was sorry to hear I was struggling and I could drop off a completed DMV form for him and he'd take care of it as soon as he could. Yup! Lucky.

There's another side to this "Disability Plaque" that is important to mention. Not all disabilities are visible. Though I do have friends who use a wheelchair and even they've been screamed at by nutters in a parking lot for using their plaques. Isn't that just amazing? I didn't take the decision to ask my doctor for help lightly. Nor will I take the decision of when to use it and where lightly. I'd rather have it and not use it then really need it on a bad day and not have it. But I do know that the fear of judgement or confrontation is often enough to keep others with invisible illnesses/disabilities from even asking for what they need. That thought did run through my mind.

Funnily enough thinking about it as yet another tool was helpful. And knowing that it will be another option for me if I need it. I asked myself if I felt I legit would benefit from it and if I had it in the last two weeks if I would have used it. The answer to both of those is "yes." Not all the time, but there were a few instances where I was panicked and stressed because of the fear of having to park far from my destination. I don't need to live like that if there's an option.

The permit will be good for 6 months. Then I can re-assess my situation. I'm proud of myself for being such an advocate and for asking for help when I need it.