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Archive for the ‘Communicating’ Category

From my bed of discontent

January 7th, 2008

This is my journal of living with chronic illness.  Trying to live well, to live a purposeful life, with chronic illness, since I don’t get the choice of living it without!

Journal entry from August 22, 1995 – “This is my fifth sinus infection since last November or December. It must be a dust problem; the house isn’t clean enough and I can’t seem to find the time to really keep it clean. The piles of things to do, literal and figurative, collect enough dust to keep me sick. But now the front of my face feels like it could explode and all I want is chocolate.” That was when Adam, my youngest, was 6 months old, my in-laws, Marika – 6 weeks dead, Walter – 3 months dead. Five sinus infections during that pregnancy and post-partum, through those deaths and mourning.  Sinuses dripping along with the tears we shed.  I’d say that was the start of the chronic sinus journey. 12 1/2 years ago.  I had a baby and a four year old, a law practice I hated, a bereaved husband, and life felt way out of control.

I remember the first time the sinus pain hit – I was 13.  Bronchitis, pneumonitis, those were my common issues then, and into my 20’s.  When the front of my face started burning that evening, riding the train home from a play in NY, I remember thinking that sinus problems sounded like a very grown-up ailment.  Anything for distinction.  Dramatic child!

I don’t remember the first migraine – the first one I recognized as a migraine already felt familiar, like something I’d felt before.  A couple of big ones in my late 20’s, then one or two a year until I turned 43.  Then they became the ominous background chorus to the soundtrack of my life, the music threatens, looms, builds, then the crescendo!  The year I turned 43 I had 2 or 3 migraines a week.

Today I am writing from my bed of pain – well, not too much pain today but writing from my bed of discomfort doesn’t have the same ring to it. How about, writing from my comfortable bed of discomfort and discontent? Now we are edging closer to the truth. The bed is very comfortable. My sinuses are full of ache and pressure. My head is only a little dizzy if I’m propped up in bed – more if I sit or stand, a lot if I sit or stand for more than a few minutes. I don’t have a migraine, for 8 days now, hooray! The migraine beast lurks around my temples, ready to move in if I give it a chance, boohoo!

And as for discontent – I am discontented. Downright disgusted. After all I’ve done to beat this… after all I do to manage it… after 12 years of recurring illness.  No treatment, no respite.  I’ve had enough! Thanks, done my time. Ready for my parole. Hello? Anybody listening? Where is my parole officer, anyway?

I wonder how I can coach and advise people about living powerful lives when I am under the power of some recurrent infection in some cavities in my head. I keep thinking if I was really powerful I would stop having sinus infections and migraine attacks. (And irritable bowel attacks, and fatigue, and allergies, and medication sensitivities, and while I’m at it I’d stop being nearly 49 and start being 25 again. Oh Yeah! That would be power.) And so I live with this conundrum every time.  But it’s a false dichotomy.

As far as I can tell, here’s how it actually goes:

Being a powerful person without these chronic conditions may not be available to me.

Being a powerful person with these chronic conditions is available to me.

What does being a powerful person with migraine disease and recurrent sinus infections (and all) look like?

Like assembling all the information I can get about my conditions, and the best treatment plan I can, and accepting that the best treatment plan is a moving target.

Like staying connected with people when I am sick, and reaching out for support. Taking all my supplements and medications and resting when I am sick, no matter how much I wish I didn’t need to. Doing what I can to move my work forward, right here, from bed. This involves a real honest look, sometimes it involves checking with someone else if I can’t think it through myself. What can I do, without endangering my recovery? Lucky for me, I have a lot of writing to do today. I can do that right here, in bed.

It’s 6pm and my head is worse than earlier.  The stink-bugs are coming out of hiding, buzzing around the lamps in the room.  Never had them in the house before this year – and in January!  Frickin’ global warming! If they make me jump and squeal I’ll get that headache for sure, the one that’s threatening.  Stink-bugs must be accomplices of the migraine beast.

Fighting the good fight, against the beast, the bugs & the Martians.  Good luck to you in yours.

– Megan

Megan Oltman

Tags: Adam Oltman Porcher, Adam Porcher, chronic illness, migraine
Posted in Communicating, Managing | Comments (1)