Muddying the Waters

Late Monday night, through a perfect storm of triggering factors, I experienced a nasty migraine aura, the likes of which I haven’t had in a very long time. This was no namby-pamby aura. No, this was the kind that came with flashing lights and shapes obscuring half of my visual field, leaving me with a simile of going blind that I didn’t appreciate at all. Luckily, I managed to snag an attendant and get to bed very quickly. Since then, I’ve had the companionship of a particularly insistent migraine. Which I also haven’t appreciated at all.

As I was seeing the nurse at my doctor’s office for my Humira shot on Tuesday anyway, I asked if it was possible I could hop in to see my doctor to get a medication that kicked more butt than Tylenol. After I explained the situation, she asked a number of questions, clearly screening me for something more serious (like a stroke):

Had my speech been affected? Well, not so much this time, but verbal clumsiness and having trouble finding the right words is a common feature of my migraine auras. And fibro flares.
Was my vision blurry? Yes, my left eye was still having some aftereffects from the intense light show, but again, blurry vision comes with my migraines. And fibro. And allergies.
Did my neck hurt? And this was the point where I started laughing, because my response to this was “honey, my neck always hurts.”

I eventually saw my doctor, who agreed that my symptoms was a classic migraine and I’ve been trying to avoid bright light and loud sounds since. But this experience also made me think — not something I’m fond of when visited by a migraine, but when the brain kicks into gear, what are you gonna do?

Chronic illnesses muddy the medical waters. For the healthy among us, odd symptoms are out of the ordinary and can be a reliable indicator of something serious going on. For those of us who live with interesting chronic illnesses, odd symptoms are part of our everyday. At first, you may find yourself seeing a doctor more often while you check whether this symptom and that is something that’s going to kill you, but over time you learn the most of them don’t. In fact, over time you may start to get quite cavalier about strange symptoms, because you’re so used to it. It’s just another manifestation of your disease.

How many of us have ignored something for long enough that it became sort of serious? I bet almost all of us have.

Chronic illness has a tendency to make you almost arrogant about your body’s ability to cope. Yes, I realize this sounds completely counterintuitive, but bear with me. If you every day have symptoms that most people would be alarmed about, yet are within your norm, it becomes increasingly easy to shrug off for instance, becoming half blind, losing your ability to find the right words and if your neck hurts all the time, when is this pain a sign that you should see a doctor and when isn’t it? Since you’ve experienced the symptoms over and over again and they haven’t killed you (and you try not to be a complete hypochondriac) oddness gets moved to the category of Nevermind more often than not.

Which, when you think of it, is an indicator of a rather supreme confidence in your body’s ability to cope with things that in healthy people are considered reason to call in sick, crawl into bed and maybe see a doctor. For you, on the other hand, they are bump in the road requiring some extra painkillers or maybe going to bed early. Otherwise, you keep going. Or in the immortal words of my father, F*** On Regardless. Because if you called in sick or saw a doctor every time something weird happened, you might as well quit your job and take up permanent residence at the nearest hospital.

All of this is not to say that those of us who have chronic illnesses are somehow tougher than the rest of you. We all have moments where everything gets to us, regardless of our states of health. But norms are relatives, each person’s reality different. And each of us suck up something in a way that it amazes someone else.

Each of us FOR every day.


Adrienne said…
"Because if you called in sick or saw a doctor every time something weird happened, you might as well quit your job and take up permanent residence at the nearest hospital."

So true! I have to laugh at some of the "see your doctor if" advice that I read. I don't think so! Otherwise, post-fibro-diagnosis, I've had to redefine when it's time to go to the doctor- if the problem is new and different *and* doesn't go away after a couple days it's probably time. I'm good with that. What I don't have is a very good gauge of how *severe* the new & different thing is. Oh well, you do the best you can!
Eileen said…
This is something I have a rant about every so often on our polymyalgia rheumatica forum! The only treatment is pred to control the symptoms but the dose needed for that (15mg/day max) is not enough to prevent giant cell arteritis developing (more like 50-60mg or more) and about 1 in 6 patients with PMR will go on to develop it. It may have been GCA that was ringing bells with your doc as the symptoms are similar-ish.
Anyway - I have seen patients who have lost vision for several minutes asking on the forum what they should do! Er - get thee to a doctor NOW! Or, over and over, symptoms of atrial fibrillation or other BP/cardiac stuff are simply put down "to the pred".
There are a few nasties that we with an autoimmune disorder are at greater risk of - we need to know and watch. But I still have to have a rant about "putting it all down to pred"!!
Cathryn said…
I think I would have liked your father!

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