Quote of the Day

Nothing is so much to be feared as fear. –Henry David Thoreau

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Invisible Suffering from Hurricane Sandy

Hurricane Sandy is going to be a storm of historic proportions. It could leave large areas of the East Cost with damage from wind and flooding. Large areas with power outages are very probable.  Snow is very likely in higher elevations.  Who knows how much the damage will cost us monetarily once all is said and done.  Who knows how many people will have damage to their homes, yards, cars, etc.  Who knows how many people will have had to evacuate to get out of the way of Hurricane Sandy.

But there is a group of invisible sufferers who feel Hurricane Sandy’s wrath in a whole different way than everyone else. Yes, we feel the wind and the rain on our faces when we dash out to our cars. Yes, we have things blown around in our yards, or flooding in our basements, or fallen trees, or power outages.  But we also suffer in a way that no one can see.  We have fibromyalgia. 

Hurricane Sandy

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Fibromyalgia is estimated to affect about 4% of the US population. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. The best description of this I’ve ever heard is that our brains process millions of signals all the time and weed out the ones that don’t matter, like the feel of the shirt on your back. Well, our brains see the signal of the shirt on our back as pain.

One of the symptoms of fibromyalgia is a heightened sensitivity to weather changes. We are human barometers. Pressure changes are especially bad for us. So to be in the midst of a hurricane is very, very painful for us. We have to deal with all the normal hassles of a storm like this — school cancellations, road closures, wind and water damage — but we also fight our chronic pain which becomes very intense during strong weather systems like Hurricane Sandy.

I’m sure someone somewhere along the way has asked you, “What is your pain on a scale of 1 to 10, with 1 being very little and 10 being the most you can imagine?” Well, for me and many other fibromyalgia sufferers a good day is when our pain is at a 5.  My bad days are at an 8 or a 9.  Our pain can go off the charts in crazy weather like Hurricane Sandy. We can be incapacitated by our pain. It feels like the weather is pressing down on us, trying to crush us. Our bodies feel like one giant pain nerve firing on all cylinders. Every little change in the weather is like a fresh beating on our senses.  We feel totally beaten down by the weather and by our disease. All we want to do is sleep through the weather and not wake up until Sandy has passed, but we can’t. Sleep alludes us during the best of times and there’s no way to sleep when you’re in that much pain. We rely on medicines to get any sleep at all.  I know I take enough muscle relaxers to knock out a small horse, but it doesn’t do much for me. My brain won’t shut off and let me sleep. My brain is always going, always processing, always signaling to me which body part is hurting now.

Hurricane Sandy is torture to us. It’s a beating on all of our senses and leaves us in pain beyond the “10” you can imagine on your pain chart. We suffer invisibly through the storm. We wait and hope and pray for the storm to pass. We go about our normal days as best we can, even though we are in immense pain. We will not be shown in any statistics you see of the damage Hurricane Sandy caused when all is said and done. But we will have felt the effects of Hurricane Sandy in a way you can’t imagine if you’ve never experienced chronic pain. Hurricane Sandy will have left a scar on us — another invisible scar, one of so many we have gather in the years of pain we have experienced.

I’m lucky that I’m on the fringes of Hurricane Sandy and so far only have a fast worsening headache. Tomorrow is supposed to be the worst weather for me, so we’ll see how I fare. My heart goes out to my fellow fibromyalgia sufferers who are suffering invisibly in the midst of this storm. Hang on, this too shall pass. I wish that everyone in the storm’s path will be safe, but I especially wish that all of my brothers and sisters in chronic pain who are suffering so much through this storm weather the storm as best they can and that the storm passes as quickly as possible for the sake of everyone who feels the storm so intimately and painfully. Be safe everyone!

Quote of the Day

I'm closer than I was yesterday

“Victory is always possible for the person who refuses to stop fighting.”

–Napoleon Hill

Maybe if we just keep fighting, and work every day to get a little bit better, one day our fibromyalgia/chornic pain will just go away. Or someone will develop a drug that reduces our symptoms. What a victory that would be!

Blue Ridge Parkway Drive

View from Blue Ridge Parkway

Today was a beautiful day and almost 80 degrees in late October! It’s Thankful Thursdays and today I’m thankful that my husband and I got to spend this beautiful afternoon driving on the Parkway, enjoying the fall leaves that make the mountains so lovely. The mountains looked like they were on fire with all of the dark reds and oranges. We had a great time driving with the windows down and music playing. We stopped a couple of times to admire the view. My head and jaw were throbbing but that seemed like nothing compared to a perfect afternoon with so much beauty around me. I’m so glad we got the chance to do this. To get out of the house and spend some time together. It was a lot of fun.