Sunday, August 17, 2014

The Long Haul

This post is filled with some brutal honesty and thoughts that have been going through my head for some time now, and I want to be authentic and post it. I think often about what I wish I would have known when this thing started a few years ago. There are many, but most of all I wish someone would have told me that this would be a long haul, a battle without an end. I was completely ill-prepared for the endless questions, suffering, progression of symptoms, testing, appointments, grief, and slowly but surely losing my ability to do the things I love. I wasn’t prepared for the stamina required to fight so hard.

Since this started in early 2011, I have always had this thought running through my head: “It will get better. My doctors will figure it out, I’ll get better treatment, and then I can get back to my life.” When I got ill and left school, I expected to go to a few appointments, get some answers, and move on. I had no idea what a behemoth Western medicine is, a convoluted matrix where the patient must coordinate his/her own care and grasp for anything meaningful that appears. I had no sense of the excessive amount of time from onset of symptoms to diagnosis and treatment. No idea how much energy I would need to read through piles of bloodwork and notes from doctors to find anything tangible, figure out which appointment and test is next, which doctor to add to the perennial, growing list of specialists, research to see what other patients are doing. Baby steps and waiting. The endless, soul-sucking waiting that never ever ends. I had no idea. 

I discussed stamina in another post and it’s something that I have been thinking a lot about this year, particularly because my health has taken a sharp left turn and I’m back on the long road to diagnosis again, rapidly losing my mobility. I’ve been thinking about how much I just want a day off. One day where I don’t have to fight so hard to do all the right things: take all the medication and vitamins at the right time, exercise, drink enough fluids, get enough salt, rest but push myself just enough, get enough sleep, eat the right things, go to all the appointments and tests and be willing to do whatever they say, try to have a life. Work so hard all the time, yet continue to go downhill. But I work hard every day because I need to know that I am doing everything in my power to try to have some semblance of quality of life. I like to be in control and it gives me—to some extent—a feeling that I am a participant in my own health. 

When I heard the news recently that Robin Williams had been diagnosed with Parkinson’s disease before he committed suicide, I felt so much compassion for him.  I don’t know what it is to battle addiction, but I have dealt with depression my whole life and chronic illness will take you to even darker corners of your mind. On the worst days, the thoughts that run through my head are unmentionable. When I look into the future right now, I don’t see the horizon. I see the edge of a cliff. I wonder if that’s what he saw too. Chronic illness and depression go hand in hand, and depression can magnify illness. The real battle is not the illness itself; it’s keeping a stranglehold on hope.

Yet, the future is not pre-determined, and many times I believe we think that when the worst happens we won’t be able to deal with it. The human body and mind are designed to survive and thrive and people can amaze themselves with what they are able to overcome. Chronic illness is no different. Hope and perseverance is all we have in life because there is no alternative. The stamina it takes to thrive and keep going in the face of illness is grueling but it’s possible. I won’t mention any hackneyed phrases about “staying positive” because I can’t always manage it. Illness is a long haul, but so is life. It is possible to have some faith in yourself and your body to sustain the muscle memory to keep going—to wake up every day and just keep going. You can look into the future and see the edge of the cliff, but you can still make the most of the walk before you reach it. 

Saturday, August 2, 2014


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