A path through the woods in Portland, Oregon. Photo by Jennifer Willis, 2019.

welcome to the club

Earlier this week, I received two queries in a single day about dysautonomia, and I’d gotten a Facebook private message a few days earlier about the headache. I do occasionally get a comment on an old blog post or an email message through my website from someone offering encouragement or looking for answers — and I know I haven’t been particularly good about answering in a timely manner, or at all. Both of the messages I got recently were from people who were newly/tentatively diagnosed with dysautonomia and I was able to respond almost immediately, and it occurred to me that it might be a good time for me to offer a quick update on my own chronic illness/pain.

Basically, I still have dysautonomia and I’m still having headaches every day. For the most part, the daily head pain isn’t nearly as bad as it was a couple of years ago, and that’s a blessing. That doesn’t mean everything’s fine. I still have trouble focusing and working through the pain, and it’s often bad enough that I simply have to seek out passive activities (e.g., watching animal videos when even reading is too hard) and resolve to try again the next day. But I think I’m doing better than I was.

Since November 2014 when this became truly an everyday issue, I have tried numerous medications (over the counter and prescription), lifestyle changes, environmental tests, alternative therapies, and home remedies. I’m still looking for something that works. I’ve found that CBD lotion can occasionally blunt the pain, but I can use this topical only once every few weeks or so, else I build up a quick tolerance. Other non-tolerance-building solutions that don’t eliminate the pain but help to distract from it are aromatherapy (both via a diffuser and through topical application) and wearing a bag of ice on my head. So these are my go-tos for now.

Dysautonomia also remains a problem. About a year ago, I started working part-time from home as a virtual admin when The Oregonian canceled my monthly feature. I was initially working twenty hours per week and was really struggling with that. I’ve since cut my hours to fifteen weekly, and that’s still a challenge. I’m trying to find the best balance between taking care of myself and needing to make even a tiny bit of money.

Here’s some of what I wrote in email this week to someone with a new dysautonomia diagnosis:

Everyone will have their own opinion of “what you have” and of what you should be doing and feeling and thinking about it. That holds true for medical professionals as well as for family and friends and sometimes even the government. You are the only person who is a true expert in your body and in your own experience. You are the one who has to live with your symptoms and with the side effects and the positive or negative consequences of whatever management plan you might try. Which is to say you are your own best advocate, because you have the most (really, the only) skin in the game.

Trust yourself. And believe yourself, even when/if no one else does.

Dysautonomia means never being completely sure how my body will react to any given stimulus. There are days when I feel like crap and when I don’t know how or why I managed to leave the bed. There are days that are less bad. It’s been a long while since I last felt strong for an extended period of time, but I’m hopeful some of those days might come my way again. And there are many times I honestly don’t know how I feel. Am I hungry? Tired? Dizzy? It can be frustrating and even frightening. It can be especially maddening when a particular strategy that used to work suddenly fails. There is mourning over who I used to be and what I used to be capable of, and having other friends who are dealing with similar chronic health issues can be invaluable to help sort through the many layers of trying to have a real life.

I do still manage to enjoy myself and have fun; it’s probably just smaller now than it otherwise would be.

In the meantime, I am looking into yin yoga as a means of building back some strength. I continue to hike a couple of miles every morning, even when it’s difficult — because physical activity helps my circulation, which can be a real problem for someone with this condition, and because I really like walking in the woods. I have been staying on top of my vitamins and my hydration, and I’ve been steadily tracking my symptoms; my bullet journal has been an excellent tool in this respect. I’m also digging again into possible genetic components — specifically with regard to MTHFR, for which I am compound heterozygous — and to what environmental, dietary, and lifestyle factors can have the most impact there.

In other words, I keep trying, ever and always.

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