Vacation!

I’m doing something crazy next week, something I haven’t done in years. We’re going on a vacation! I mentioned this before, but I haven’t left my town for something that isn’t medically-related in two years. 

Seriously. Two years.

I haven’t even gone to the next town over to see my BFF’s new place. She moved there almost two years ago. I haven’t made it to the Bay Area to visit my sister, about a two hour trip. She’s lived there for three years. I haven’t been to our favorite place, Sonora, an hour drive away, in two years, and the last time I went to Yosemite was three years ago. I haven’t even made it to any of my appointments at Stanford this year. I've had to cancel every single one. Travelling has become absurdly challenging, especially this year, so all of that has just not happened.

The last time we left town for something fun was when we went to Tahoe for a week with some friends two years ago. We had a great time. I wasn’t doing great but I was doing much better than I am now. I was still working at that time.  I had just survived the last semester I was able to teach and I was rapidly losing my mobility and independence at that time, but I wasn't completely couch-bound then. We played games most of the day and went out to eat most evenings. I sat on the porch that overlooked the forest and read much of the time. We went to the lake one evening as the sun was setting but I wasn’t able to last long so we didn’t get to watch the sun set.

The view from the porch. Ah to live with this view every day. What a dream

I ended up at the ER on the last day we were there. That’s a story I still haven’t shared on the blog yet and I still might someday. If I could create a dream ER experience, it would have been that. I was treated quickly and the ER doctor, who was probably younger than me, had heard of POTS. That ER was incredibly busy. I got an IV and some Zofran and as I waited for the IV to finish we heard someone have a heart attack, someone who drowned in the lake, and the man in the bed next to me was withdrawing from something. The ER doctor forced me to drink Gatorade which I HATE because I declined a second bag of fluids. I just wanted to go home. After one bag, I felt ok enough to make the drive. Anytime I need to go the ER, I dream about go that hospital in Tahoe.

Mustering a smile as the IV worked its magic

We didn’t know at that time that I also had Myasthenia Gravis. I was having difficulty breathing and the lack of oxygen at high altitude did not help. I hadn’t even told my doctors at that point that I was having trouble breathing. The mountain thunderstorms that were passing through made me severely nauseous. It was a bit calamitous but aside from having to go the ER, I look back on the trip with fondness. I had a great time. I’m glad we were able to go somewhere while I was still able to travel. 

I just wish we would’ve stayed at sea level.

So this year we decided to go to Monterey with the same friends and stay in a house for a week. As I’ve been going through the worst health crisis I’ve ever had the last few months, I keep thinking “I have to make it to Monterey. I will make it no matter what.” I haven’t really been focused on much else at this point besides trying to get well enough to make it.  

We planned this trip awhile ago and I always imagined that I’d wake up each morning while we were there and do my usual routine of yoga, stretching, meditation. I never imagined I’d be using my wheelchair full time instead. In a few days, it will be two months since I’ve been unable to walk or stand. It’s not how I imagined this trip but it doesn’t mean I’ll enjoy it any less. We were planning on playing a lot of games too but more than likely I won’t be able to participate much, but that’s ok.

As a lifelong Californian, I've been to Monterey many times over the years so I definitely won't feel like I'm missing out since I'll have to spend most of my time on the couch while we're there. We were planning on going to the Aquarium, and that’s the main reason why we chose Monterey since the only way I could manage a trip to the Aquarium is if we stay multiple nights. I’m not sure I’ll feel well enough for that but it’s not off the table. Not sure I’ll be able to make it to the beach either but I’m definitely going to try. I'm mainly just looking forward to being somewhere that isn't obscenely hot and getting a change of scenery, from my couch to another couch.

I’m going to try to take some time off from being engaged in the world. It’s election season here in the US and I’ve been completely absorbed in that, global politics, and the violence that’s happening here. I may spend all of my time at home, but I’m still an engaged citizen of the world. But I definitely need some time away from that and running through the list of the all the appointments and health management I need to do in my head every day. There’s always something I have to prepare for, plan, make calls about. I’m going to take a much-needed break from it all.

When I get back, I get about a week to rest and then I have to do the worst test ever again (the Single Fiber EMG) at Stanford. But I don’t want to talk or think about that right now.

I’ve been trying to figure out what a suitable number of books bring is. If we’re there for five days, is four too many? What if I run out! What if I have nothing to read! The horror. I’m just going to take it all. Two works of fiction, one of philosophy, one of poetry, and my tablet in case I need anything else. Seems reasonable to me.

It was over 100 degrees essentially every day for a few weeks here. I was telling husband that I don’t even know how to pack for this trip because I don’t remember what 65 degrees even feels like. I’m going to enjoy being able to wear my higher quality compression stockings with jeans and being able to go outside. It won’t get cooler here until November so it’ll be a nice reprieve from the brutal heat.

I went out into public for the first time in months last week and it ended up being a bit disastrous since it was 104 that day. We went to my favorite antique store. I'm hoping that the cooler weather will make leaving the couch a little more feasible but we'll see. 

Husband and I at the antique store. No amount of air conditioning could save me at that point but it was nice to get out

I've been carefully planning for this trip for weeks now. Traveling while ill presents enormous challenges and it's difficult to make contingency plans for every form of chaos that can ensue. I've made a list of everything I'll need to take, including my meds, my breathing machine, shower chair, inhalers, my provisions and electrolytes, etc. Anytime I think of something, I write it down since my memory is unreliable. I'm working on packing a little every day so it doesn't completely exhaust me too much. 

I'm just going to cross my fingers and hope for the best.

I’ll probably be quiet on the Facebook page but follow me on Instagram or Twitter where I might be posting some pictures.

I’m hoping to get a ctrl-alt-delete on life, a nice reboot, and come back feeling a little more refreshed and renewed. I'll be listening to this song over and over, enjoying a little reasonable sunshine. 

Living

Stubbornness. I never knew this personality trait would come in handy later in life, but chronic illness requires a certain amount of stubbornness to persist. Stubbornness to thrive and persevere—to never relinquish the dream for a better life. You can’t fight for the life you used to have because that doesn’t exist anymore. You have to fight for a new life because chronic illness will try to defeat you. It will crush the things you love most in the world and stomp on them with a maniacal laugh. 

So I want to re-learn what it is to live. I’ve spent the last four years spending most of the time feeling terrible, going to appointments, doing tests, struggling through working, being couch-bound, feeling frustrated and afraid, and lacking fun and enjoyment. Because of this, I have missed almost everything I was invited to this year. I spoke before about how often it feels like life is passing you by when you are ill, and somehow you are just sitting in the eye of the storm. I miss the flavor of participation.

I used to love traveling, hiking, dancing, shopping, doing things, moving. But I’ve had to learn that my perception of “living” and doing the things I love has had to change since getting ill. I have to re-learn how to live within my limitations instead of just trying to fight those limitations. There’s a steep learning curve for this. People talk about physical limitations as just “mind over matter” and how we should never accept limitations, but these people have never had their body scream WHY-WOULD-YOU-EVER-DO-THIS-TO-ME every time you stand up or walk. These are the same people who tell me they would never use a mobility aid. Sometimes you don’t get to make the rules. But you can find a way to work within those rules.

So I finally had some time off for the first time in two years this summer, and I wanted to make the most of it, to try to regain the muscle memory of leaving the house and doing things. My husband, some friends, and I went on a short vacation in Tahoe recently. We rented a cabin and stayed for about a week. I was terrified of what the altitude would do to me or if I would even be able to do the drive, but I sucked it up and went to the cabin. The altitude was not my friend. I had to buy a shower chair because I wasn’t going to make it through showering without a head injury, so I finally rounded out my collection of old lady accessories. I took my wheelchair, walker, and cane, and planned to go do some things while we were there. I was mostly only able to sit and read, which is a pretty ideal vacation to me.

My sweet view while reading

My worst fear happened while we were there also: I had to go to the ER on our last day there. That’s a story for another time. I’m still trying to recover from this trip weeks later, but I don’t regret going. We had a good time despite how terrible I felt. However, I will leave Tahoe to the orthostatic tolerant and stick to sea level from here on.

Some other attempts at living fell through this summer, but it wasn’t all a loss. I didn’t get to see one of my favorite musicians in concert as planned. My friend and I played a show and I was brutally ill that day, so I didn’t get to play much. Illness is a cruel bitch. I make plans and build dreams and then she dashes them at every turn. Alas, I made good attempts at these things, and I’m satisfied with at least making attempts. Really, I spent most of my summer sitting in my yard and thinking about life. I had some time to finally wrap my brain around the changes in my life and learn how to appreciate these changes instead of just wasting all of my energy resisting them.

So this re-learning to “live” thing is a process and I’m stubbornly still trying to find a way.  Sitting on the couch and just pushing through life is not living. It may be living with your illness but it is definitely not living a life. It's too easy to give in or fall into the trap of not moving when your body refuses to comply with being a human being or when life hands you a really crappy hand of cards. But our only option in life is to keep going. I hope that others with chronic illness or other obstacles also have the same reserve of stubbornness to tap into to keep fighting and trying. I am interested to hear how others who face obstacles to living a full life try to navigate the desire to live. I know the struggle is universal.

I’m thankful I had some time off, I’m thankful for what I can still do, and I’m thankful for the great life I’ve been given. Dysautonomia can suck it. I’ve got a life to live. 

I gathered enough energy to get to see the lake one day while we were there. I'm glad I did