Birthdays with Chronic Illness

Huh, wow, I must really not have wanted to post this. It’s now just shy of a year after the birthday this references. In some ways, turning 41 actually seems worse. Over the hill. I actually had a (horrible) appointment last week where someone from whom I was asking for pain management support suggested I join a CrossFit gym because other women who were middle-aged and had health issues went there. There were so many things wrong with that statement, but it being inferred that I’m middle aged for the first time was, uh, kind of sh*tty.

I wrote this last year, a few months into a backslide in my migraine attacks. At the time, I thought it was a temporary flare. It was not. My attacks have become, and remain, daily and pretty severe. The sentiment, however, is the same.

It has taken me a few months to fess up to this, but I turned 40 years old in March (2019). I didn’t want a party. I didn’t even want people to acknowledge it – my family, friends, anyone. I left my birthday on Facebook, but turned off the ability for people to comment. I didn’t want people to send happy birthday wishes when happy was the last thing I was feeling about the occasion.

I also did want to field sentiments like, “Hope you feel better soon,” or “Wishing a cure for your migraines.” The impossible-ness of those wishes are always hard to hear. I was in the middle of setback in my migraine healing; my attacks had been worse since the beginning of the year. Turning 40 during such a period of poor health felt like failure. It felt like a major milestone missed. This wasn’t where I thought my life would be at 40.

It doesn’t help that I feel like I’ve lost years. First, I lost years to school. I spent years… forever… in graduate school. I already felt behind some of my peers because of this. Except that was my choice. Then chronic illness cost me years that I didn’t sign up for. For this reason I feel perpetually stuck in my mid-thirties. That was how old I was when my migraine attacks began to worsen, transitioning from low episodic to chronic and then daily.

Between years of grad school and chronic illness, hitting life’s milestones has just become out of reach. I have do not own a home, have no career, and I’m not healthy enough to travel on exotic vacations. Dating with a chronic illness is difficult, especially in rural Vermont where the selection is… slim.

What I’m coming to realize, though, is that there wasn’t a predestined life laid out for me that I’m missing. It never existed. I’m being unfair to myself to mourn dreams. This is my life and I need to make of it what I can. Right now, it may not seem like much, but I’m working to make my world larger, while trying to be content with what is in it.

I hope that the future brings better health. That seems like the biggest key to regaining some of the life, milestones, dreams I’ve had to let go of over the past few years. Because, while it isn’t productive to mourn those things, I don’t see the harm in hoping they might still be achievable. It’s a subtle difference in mindset.

Now, months after writing this, I’m as sick as ever, but not feeling quite as dramatically bummed about my birthday. It is what it is. I still keep trying to balance the reality of my current health with finding better health. And next week, when I blow out my 41 candles, it’s probably pretty obvious what I’ll wish for.


Migraine Triggers: My Constant Nemesis

I’ve written about my migraine triggers before, but one of last week’s Good Morning America segments on migraine focused on triggers. To say that the focus on triggers – without really delineating them from causes – irked me is probably an understatement. I’ll explain. 

When I was episodic – having fewer than 15 headache days a month of which 8 were migrainous, the technical definition – I knew my triggers. They were a string of nights of poor sleep, flying, excess alcohol (especially red wine), stressful situations, and hormonal changes. I could control these in various ways, some easier than others. However, the reality was that for 20ish years, I was having few enough attacks that I didn’t really care about my triggers because the risk vs. reward of tracking and avoiding them wasn’t worth it. In other words, if I slipped up once in a while, “Oh, well!” I took my abortive treatments, they worked, I moved on with life. 

Then I became chronic and a headache specialist described the “bucket theory” to me. head fireThis is the idea that as we stack our triggers, our bucket becomes overloaded. Once it is full (whatever that point may be for each individual), we have an attack. What can get complicated is the idea that what may be a trigger one day, might not another because you didn’t stack it on top of the thing you did yesterday. So yesterday’s wine triggered an attack, but it was because you slept poorly the night before and there was a storm coming. Last night, you slept great and the barometric pressure has been steady so that glass of wine you had today didn’t bother you. 

This get incredibly complex when attacks become chronic and there’s little break in the migraine to know when one started or stopped. Tracking back to what might have triggered it is also tough when some triggers are instantaneous and others slow burn over days. 

But what really gets me is the idea that tracking my triggers will even solve anything. I did this for years. Literally tracked in a spreadsheet next to my symptoms all the major triggers. I could make zero sense of it; me, the data analyst. All it did was make me hyper aware of my potential triggers, wondering every time I encountered one, “Will this set off an attack? What about this?” The anticipation itself is likely to be affecting my migraine status. 

It also puts a lot of blame for my attacks on me. I could do everything seemingly right brain electricand still end up with an attack. I could get a reasonably good night sleep, I could avoid flying, I could avoid my potential trigger foods and drinks, it wouldn’t be during my menstrual cycle, I could be meditating, and virtually not leaving my house. I still wake up with migraine attacks every day. I’m doing everything right. I’m doing things to avoid attacks I didn’t even do when I was episodic, and I still have daily attacks. 

The implication – one I put on myself and also periodically get asked by others – is what did you do to trigger this migraine attack? For a long time, I’d try to come up with a specific reason. But recently, I gave up tracking my attacks so closely. Recent research suggests that the brain of people with migraine is hyper-excitable to stimuli. They get stuck in a feedback loop of pain reactivity (central sensitization). They don’t like change. There isn’t a hack to turn us off and back on again to reset it… yet. 

And as Jan Southern says often, tracking our triggers can sometimes make our world feel small if we restrict them too much in an effort to stop our attacks. 

Maybe it helps, but maybe it doesn’t and we’ve just made our world smaller. One of my toughest triggers to cope with is food triggers. I have a fair number of them. Some trigger migraine attacks. Others trigger my IBS symptoms. My diet is limited and eating outside the home is complicated. Travel is hard. Eating from a menu is nearly impossible. This is incredibly limiting socially. I mourn being able to eat like I used to. There are few things I truly miss, but food and travel rank up there pretty high. They are so tied to the social life I’ve lost. 

For me, I’m currently in such a bad flare that my daily baseline is moderate to severe. No. Matter what I do, I will have an attack on any day I don’t take my acute medications. On one hand, I’ve given up trying to not trigger an attack. Why bother. It’s kind of freeing. On the other hand, I’m still just too sick to enjoy it. Ironic. 

silhouette of man raising hands against a red sunset light under green clouds
Photo by Rakicevic Nenad

No matter what, we can’t blame ourselves when when do everything right and something triggers a migraine attack. That’s internalized stigma. Migraine isn’t our fault. Attacks will happen sometimes even if we do everything to minimize triggers and we can’t avoid them all. So weigh the pros and cons, check how full your bucket is, then do what is best for you. But never, ever blame yourself if living life seems to “trigger” a migraine attack.