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

Back to the Land of the Living and Results

Well, I went back to work this week. I made it. I did it. Even though I felt incredibly guilty about being on leave, I needed that rest and intervention. I wasn’t going to make it much longer and definitely not to the end of the semester. Going back to work, I felt embarrassed and awkward. With teaching, it’s important to maintain momentum and the connection with students. I was worried I was going to have to start from scratch. I even thought I’d jokingly suggest we all reintroduce ourselves when I walked back into my classes, but as I walked in one of my students shouted “Hey! You exceeded the maximum number of allowed absences on the syllabus and we were going to drop you from the course.” I told him luckily they don’t have that power. We all laughed. It was brilliant and put my fears to rest. I am still struggling with the constant exhaustion and weakness. Over these last few months my energy level has plummeted and I just feel worse overall. I really hope this isn’t a new normal. I'm also dealing with some intense family issues, but my plan is to get some rest and recover this summer and be bright, shiny, and new for fall.  But I’m doing better. My spirit is renewed. I’m ready to keep up the fight and finish the semester with my students.  I’m ready to start enjoying life again. Snuggle my cats, laugh with my husband, do some cartwheels when no one is looking.

A colleague asked me today if I was on leave because of “stress.” I had to hold my tongue and politely inform her that she was mistaken. Sometimes I have to remember to be patient with people because I don’t look sick so they can’t know that even though I show up to work most days,  I’ve spent the last 4 months suffering and being periodically bedridden and needing to go to the ER.  I’ll take it as a compliment that I make chronic illness look good. 

I just wanted to mention the results my neurologist’s nurse practitioner gave me at Stanford for the autonomic testing I did in December. Autonomic testing can confirm autonomic dysfunction, and it is one test that was actually created to diagnose dysautonomia. I was scared out of my mind to do these tests and put it off for over a year, mainly because I did not ever ever ever want to do another Tilt Table Test again. It’s enhanced interrogation, straight up torture. I finally relented. There are three parts to the test: the TTT, the QSART sweat test, and Valsalva Manuever breathing test. This video explains them and you get to watch someone be subjected to them: http://www.jove.com/video/2502/quantitative-autonomic-testing Try to stay awake through it. 

I walked into the testing room on the verge tears and told the neurologist and nurse I refused to do the TTT. The first TTT I did in 2012 was before I was diagnosed with POTS, and I had no expectation for the test. When they lifted the table up, my heart rate, which was attached to a monitor that beeped loudly, went from 72 to 147. I thought some alarm was going off as my heart rate was beeping wildly. The sensation of slowly being lifted to vertical made me want to vomit and pass out. I will never forget that awful sensation. Then, my cardiologist injected me with a medication to make it go higher to see if I would faint. The test proved my days of partaking in the joys of rollercoasters and tilt-a-whirls are over.

Luckily for this second one, they were kind, patient, and nice and they cut me a deal. Instead of the table lifting all the way up to 90 degrees for 30 minutes, they let me just do 60 degrees for 6 minutes. My heart rate wasn’t attached to a monitor and I wasn’t injected with anything. It was a breeze. A neurology TTT is much easier than a cardiology TTT. My heart rate still went from 72 to 147. At least I am consistent. The breathing test was the most difficult but they told me it was normal, which I wasn’t expecting because breathing is a struggle. They told me my sweat test was abnormal and explained that there is some nerve damage so my body doesn’t sweat properly. That’s great for living in an area where it is over 100 degrees for four months a year. They told me I should do more testing for this. I’m not sure what other information that would provide besides confirming I am a weird sweater. I guess I could just put “weird sweater” on my resume and call it a day.

Not the Bill Cosby kind of weird sweater

I also did a nerve conductivity EMG (http://en.wikipedia.org/wiki/Electromyography)to see if the new mystery of my weird walking problem is nerve damage. The test showed no nerve damage. The saga continues and will likely include more testing to figure this one out. I have heard these words mentioned in relation to this new mystery: MS, ALS, Parkinson’s. I’ve learned it isn’t worth panicking about any new possibility until it is a reality.

I’m not sure what the autonomic testing really provided and I don’t really understand the results, so I failed at explaining them to my other doctors. This is the problem with having a rare chronic illness: I often have to be the expert and the line of communication between doctors. I'm not sure what my degrees in literature really prepared me for, but they definitely didn't prepare me for that. I see my neurologist at Stanford at the end of May and I hope he can tell me more about why those tests were useful besides confirming I have POTS. 

I worried about doing those tests for over a year and it wasn’t nearly as bad as I expected. I should have learned a lesson there, but I still panic and stress about every test I have to do. There will be more tests in the future, but I will face them in my battle gear.