Hello, I am what Fibromyalgia looks like.
My name is Gary Horneck, and this is my Fibromyalgia Journey.
Before I had Fibromyalgia, if it was dangerous, involved severe consequences for mistakes, was a type A+ activity, I was in. This is the story of my Fibromyalgia Journey!
So, Skiing, surfing, dirt bikes, road racing, underground mining, climbing to high places for lighting service, conquering fear was the name of the game for me. Most of these activities were a reaction to being diagnosed at 10 with scoliosis. I was told “you will not be able to do…”, so I toughed it out and did the most outrageous activities possible.
A life of danger came to an abrupt halt one late summer morning, in 1988, as the heavy breakers rolled into shore from a storm 100 miles out to sea. My surfing partner and I had driven 5 hours overnight to greet the sunrise, and the 6-10 ft wave sets with our body boards. My second wave of the morning was a freak wave that crested way early and slammed me head first into 2 ft of water. I woke on the beach, my partner napping away, unable to move. My neck had taken a severe hit, and my right shoulder was separated with the collar bone snapped off. When they told me “you will not be able to do…” this time I believed them.
After a year of recovery, and a shoulder that drooped and hurt constantly, I went back to school for Desktop Publishing Production. Sitting has to be easier than continuing physical work with a bad shoulder and neck, right? Wrong. My lumbar did not take to sitting, but I toughed it out, getting shots to continue working, every month for years. After 9 yrs of constant shoulder pain, I had right shoulder reconstruction. Nasty operation, with a nasty recovery. Not long after that surgery, I started getting “sick” a lot. It was like the flu, but no fever or the normal symptoms. I thought the building we worked in might be the culprit, but nobody else there was having troubles. Some days I would just wash out during the days, and have to leave early. My co-workers said I would arrive my 6’4”, and leave a foot shorter and white a ghost. I tried keeping my high pressure, 50-60 hr week for years. Finally my lower back got so bad I could not sit more than 20 minutes. I was disabled. 48 yrs old, and disabled!
Don’t worry I was told, our company has long term disability coverage. You just apply for Social Security Disability, and our coverage fills in the gaps. Ah… light at end of tunnel. I was a miner, that could also mean a train is coming at you. I was right. It was the crap express train heading right at me. My companies disability provider denied, SSDI denied. Suddenly, no income. I had to quickly sell the house I just finished rehabbing in Florida (the most perfect setup ever with income property), sell my highly modified car, take the money and run. Two years later SSDI came through, the long term disability provider gave in and paid something, but I had already moved to Alabama, bought a foreclosed property for cash, and rehabbed that myself. We recently bought the house next door, which I also rehabbed this year, and its now office space and studio for me.
So here I am on my Fibromyalgia Journey; 64 yrs old, married, with 4 great dogs, on two acres, and I own it all. I refuse to give in to any of this crap. I have had my lumbar fused, my neck is needing fusion, my left wrist is destroyed and it too needs to be fused, my hips are very close to replacement time, and my hands are arthritic. Oh, and there is the Fibromyalgia. But I still work on all my own vehicles, race Autocross and frequent track days, maintain two properties, do the cooking, and the house cleaning. I never stop moving, just jumping from task to task all day. I do have a fantastic racing simulation setup that keeps the fog at bay with vigorous daily mental activity, but staying busy and focused on numerous projects helps greatly. My pain level is usually 6-8 with my usual activities, with 9-10 after racing or big projects here at home. It takes up to a week to recover from a racing event, but its what keeps my motor running.
I refuse to give in. If I stop and think about what my body is saying, and give in to its request to just be quiet and hang out, I’m doomed. I’m a Type A+ man with Fibromyalgia sharing my Fibromyalgia Journey, not ready to stop doing what I love doing. I pay a huge pain price for my life of doing, but sitting around and regretting not trying would be a worse pain for me.
Do things slower, get help doing them, but do not stop because of your conditions. That’s my advice.