Eleven years ago today, Father's Day, June 19, 2005, I woke up with a terrible headache. That headache changed my life, changed me, changed my personality, changed my relationships, changed my concept of self. Why did that headache change me in so many fundamental ways? I still have that same headache, and doctors have never figured out why.
Along the way, my headache asked some friends to join the party. Photo-sensitivity now lives here. That means I'm sensitive to light. I need sunglasses to go outside, even when it's cloudy. On a bad day, I wear sunglasses in the house. The lighting on my phone, computer screen, and Kindle Paperwhite are all turned to the lowest settings. I joke with my kids that I've turned into a vampire.
Tinnitus is here as well. That means I have ringing in my ears. My right ear rings all the time, my left sometimes. It makes it hard for me to hear certain tones, and hard to hear on the telephone.
I have neuropathy, which is numbness. Sometimes it's a pins and needles feeling, sometimes part of me just feels dead, like too much Novocaine at the dentist. Part of my face is always numb, not always the same part though, that would be too easy. Often times my hands are numb, which makes it hard to hold onto anything. We have about half as many drinking glasses now, as we did 11 years ago. Numb hands make holding a rotary cutter dangerous, and sometimes I can't separate quilt pieces to sew them together. Sometimes the numbness travels up my arm to above my elbow. Sometimes my back goes numb, or my feet or legs.
I get eye pain, pain so bad it seems as if my eyeball will burst. Ear pain, stabbing pains that bring tears to my eyes. There are times when if I bend over, it feels like my brains are going to come out my nose.
Sometimes my symptoms keep me entertained. I get olfactory hallucinations, which means I smell things that aren't there. It's fun when it's something pleasant, the first time was birthday cake, or when it's buttered popcorn. When I smell sewage, or smoke, those times aren't fun. Searching the house trying to figure out what is on fire is not fun, it's scary, and I never know if it's just me, or if something is really wrong.
Sometimes I see auras, rainbow colored lines outlining everything I see. At my youngest son's wedding, which was at our house, I saw auras all day, it was overwhelming at times. I see spots, flashes of "lightning", and even large holes in things that aren't there.
My headache causes my muscles to tense, which in turns causes neck pain. Nowadays my neck pain is usually worse than my headache. I have a very hard time turning my head on any day.
When my headache is at its worst, I have to remind myself to breathe. I want to hold my breath because of the pain, but I can't do that. I can't talk, I can't move, I just concentrate inside my head...breathe in...breathe out... At its best, my headache is the dull throbbing in my temples, like the headache you get when you are too tired after a long day.
The headache makes it hard to concentrate. Following directions on a bad day is next to impossible. I've written thousands of checks in my life, but in the last 11 years, I've thrown a bunch away, because I wrote all the information on the wrong line, or spelled my own name wrong.
I lose words, just can't figure out what I want to say. My vocabulary goes haywire sometimes. It's not like I can't remember how to spell antediluvian ( means before the flood), it's simple stuff I can't remember, like the stuff that comes out of the faucet (water), or the thing that makes bread warm (toaster). My husband and kids are used to my weird brain farts, and they are good at guessing what I mean.
Did you ever have that argument with your significant other, where do you want to go for dinner? Well for us, my headache narrows things down nicely. Really bad day? I'm not leaving the house. Bad day? Someplace quiet, in Tucson that usually means Fronimo's Greek or Mama's Hawaiian. So/so day? Most places if they aren't crowded. Some places I walk into, and turn around and walk out. If it's crowded, we find someplace else. There are a couple restaurants that have amazing food, but I won't go back, because it's so loud it's painful.
Socializing? Hmmm.... I love people, love visiting. My headache does not love visiting. When my husband and I were first married, he was the hermit, and I was the one longing for get togethers. Now it's pretty much reversed. I still love visiting, love people. The thing that people don't understand, is that for me, there is a price to be paid for that. Being around all the noise ramps my pain levels up, concentrating on what everyone is saying exhausts me, further upping my pain levels. Trying to pretend like I'm OK, when I'm really not, when I really am just in so much pain I want to crawl into a dark room and curl up with a quilt, that is a price to be paid. I normally run hot, if you see me reach for a sweater or quilt, I'm not OK. I'm normally talkative, if I'm quiet, I'm not OK. If I'm not OK, I don't want you asking if I am OK, it just puts more pressure on me to fake it, which makes everything worse.
Some social situations are worse than others. Dinner out with another couple? Doable most days, as long as the restaurant is fairly quiet. Live music? Never. Movies? Sometimes, but I never know until it's time to leave. Group events? Sometimes, but there is always the price to be paid. Staying at someone else's house? I'd prefer not to. I want to visit, but when the pain levels get too high, I prefer to go back to a hotel, and relax in my room, in the quiet, with no expectations of me. Family events are worth it to me. There is a price to be paid, and I'll take as much ibuprofen as I need to function. Narcotics don't help, and they make me sick, so I don't bother.
I've been married 32 years, 11 of which I've had this headache and it's friends. More than a third of my marriage, I've had a headache. My youngest child is 23, so almost half of his life, I've had a headache. I have seven grandchildren, with one on the way. All of their lives, I've had a headache. I've had a headache for all my kids graduations, all of their weddings, all of their biggest life changes, I've had a headache.
So why did I title this post "Blessed", when my life is like this? No matter what this headache takes from me, I am blessed beyond it.
I have good relationships will all of my kids, and good relationships with their partners.
My husband is amazing! I am not the woman he married, but he loves me, and he's changed with me, to accommodate all the changes I needed to happen. I can't share his love of scooters with him, because I can't tolerate wearing a helmet, but I support him in his hobby as best I can.
I started quilting after I got the headache. I needed something to take my mind off the pain, and quilting had always interested me. Watching TV doesn't take my mind off the pain enough, I have to be doing something else at the same time to watch TV at all. Quilting has enough variety, that I can always do something. If my hands are too numb to cut, I use my GO cutter or sew. If I can't separate the quilt pieces, I'll quilt or plan a design a quilt on the computer. I always have projects in different stages, because my abilities from day to day change.
Every time I complete a quilt, I have victory! I didn't let circumstances stop me, I made something beautiful while in pain. I made something to comfort someone else, which brings comfort to me. How many quilts will I make in my life? As many as I have strength to make, to let the people I love know that I love them, and to comfort strangers as well.
Do I have challenges? Sure, who doesn't? But blessings always tip the scale. Yes, I feel pain, but more importantly, I feel love...I feel hope.
Recharging, Day 2!
17 hours ago