The Visible and Invisible Me

The most difficult thing for me about having chronic headache disease – and being close to people – is what they don’t see or, perhaps, what I have not yet learned to share.  They do ask how I am or how I’m doing, but it tends to end there or with an expression of sympathy.   And I don’t follow up with more specifics, what’s going on with me day to day.  I don’t know how to bridge this gap without dragging things down into a kind of hole.  And I have good friends, who are good people, whom I value highly.

Half Seen

The trouble is that sometimes I don’t really want to go there either.  If I’m more or less ok at any given moment in time, I’d rather focus on the now, the good dinner, the company, the garden, the outdoors, art, my travel plans or any other of a million things I’m truly interested in.  But just sometimes – I’d like to talk about what happened yesterday, the day before or last week.  About how I had a classic (as opposed to common) migraine with aura for the first time ever.  About the niggling little fears that accompanied the recent research published in JAMA (Journal of American Medical Assoc.) revealing that women with migraine have brain lesions with unknown health effects.

Migraines Linked to Brain Lesions in Women

What People See, hear, and say:  the right side of this drawing

The other day, a group of us were together, and someone said, “I don’t really feel any older.”  Everyone agreed more or less – except for me.  I said, “Boy, I do.”  Slight pause, then resumption of conversation.  I think people assume they know what’s up with me – that I’m just having a lot of headaches.  Period.  But it’s both way more complex than that and difficult and sometimes interesting, sometimes, believe it or not, funny.  It’s my life.  It’s not the same boring pain, day after day.  It’s often different and I’m always trying to figure out what, if anything, set this last one off.  I’m always working on the next step I need to take to try and improve my status from chronic-daily headaches, right now, to episodic again.

What People Don’t Know to ask about and what I don’t say:  the left side above

For example, right now I’m focusing on getting more exercise and trying to sort out the migraine aspect from the cervicogenic headaches which is a fairly recent diagnosis.  I’m having to make decisions about whether or not to go for ablation of cervical peripheral nerves now or wait and collect more information.  Each and every time I get a headache I try to distinguish migraine from cervical headaches and then decide whether to call my anesthesiologist for another injection into those cervical nerves to confirm his conclusions.  He tells me, that while this ablation procedure (burning or cauterizing) could eliminate my cervical headaches for 6 months or so at a crack (when another procedure will then be needed), there is a tiny possibility that it could make things worse.

And so it goes.