Climbing My Way Back

Hello out there. Sorry for the silence here on the blog the last few weeks. I’m working my way back to the world and the blog. It’s a slow climb but I’m making progress.

A few weeks ago, I did something really really stupid. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a reminder that they are still there. I tried to play with one of my nephews. It was just a few minutes of unbridled fun, but it was far more than my body could handle unfortunately. I often feel sad that I can’t participate in the fun when my nephews come over and I worry that they’ll remember me as a lump on the couch, but I should’ve been smarter. I guess all I can do is learn from the mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.

Sigh.

I’ve had to spend much of the last few weeks in bed. I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my mistake but then a severe bout of insomnia and depression took over. I’ve forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. 

So this is why I haven’t been posting. I even had to take some time away from all social media for awhile too so I could just focus on surviving. The last three weeks have been a bit of a veritable shitstorm, but I’m trying to remain undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and sight.

Day 15 Selfie 

The worst part about all of this is I had to miss multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the standard immunotherapy used for Myasthenia treatment. At least, that’s what my doctor said. I’ve been waiting for years to finally start that treatment now. It didn’t help my terrible record of showing up to appointments and tests so far this year.

I am continuing to decline overall but I also keep screwing up and setting myself back. I’m sure many of you out there know this cycle: you start to feel a little better, you try to do too much, you end up immobile and back at the beginning. I keep doing this so I’m trying to finally learn from my mistakes and make some changes. Old habits die hard though.

I’ve stopped trying to use my stationary bike. I used to have some success using it and it does help my stamina but the last few times I used it, even when I was having a good day, I ended immobile for a few days. When I’m able to exercise successfully again, I’m going to stick to yoga and my short half block walks with my trekking poles. I was having some success with that. If exercise is only setting you back, then it’s counter-productive. This is what I’m finally learning. Exercise has to enable functionality, not the reverse.

I need to stop trying to do too much on days before appointments. I need to really take the day before to rest so I can show up.

If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. 

One of my greatest fears in life is making the same mistakes over and over. So I’m really trying to stop asking too much from my body every day and hope we can live in a more peaceful communion.

The last few weeks have been brutal but there have been some bright spots. I try to sit in our little yard when I can. Some days I can’t but when I can I sit out there a few minutes at a time so I don’t crash too hard. It lifts my spirits. 

One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.

My brain is mushy from such little sleep for weeks so this post is a placeholder until I can get some functionality back on all fronts. I have a sponsored post from SaltSticks coming hopefully next week so stay tuned for that. I love their product. I have some other posts I was working on and a few changes in mind for the blog. 

I can feel better days on the horizon.

I hope all of you are doing well out there. 

Dear Body: Please Forgive My Transgressions

It happened again. Just as I was starting to recover—ready to grasp a bright spot—I make more mistakes and go back to where I started.

Stuck in this cycle of slight improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and over.

I push you body to exercise when you can’t. I make you walk when paralysis has overtaken your limbs. I have treated you as the enemy for years when we were always a team. Always.

Sometimes I just get so tired, so frustrated, so angry at the ever-increasing limitations. So tired of being shackled under the weight of illness. Then I over-step, ask for too much, push too hard.

I ask for forgiveness.

I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes. 

But you can’t do that anymore. That's no longer within the parameters of your abilities.

I was bedridden for hours and couldn’t walk the next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a lump on the couch—someone who asks others what they’re doing, who listens to other people’s dreams and aspirations, who rarely leaves the circumference of a room. I don’t want this.

So I push myself too hard every day. I ask too much every day.

When I rail against my fate and make questionable decisions in protest of illness, you remind me that my limitations are serious. The consequences are real. My breath leaves, my limbs no longer move, any hope of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.

Only rest. 

I rest in penance.

I ask that we try again. One more time. I’ll listen to what you tell me. I’ll ask no more than you can give. I’ll treat my limitations as sacred.

Because when we’re a team, we can do great things.

You give me energy to play music—to get lost in a melody for a short time, to improvise and roam in the geometry of sound. It is in those moments that I am truly free.

You give me enough energy to go outside sometimes and walk a few feet or look at the flowers growing in my yard. In those moments, I feel like I’m a member of the world again.

So we start over, start the cycle again, and maybe this time I learn from my past mistakes and press forward enlightened and wiser.

Ready to try again.