Monthly Archives: October 2012

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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!

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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!

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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.

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Wisdom from the Tea Leaves

I’m really enjoying the little nuggets of wisdom that come with each tea bag on my new favorite Yogi teas. It’s like a happy fortune cookie message to start my morning. I wanted to share this one.

“Patience gives the power to practice; practice gives the power that leads to perfection.”

Happy Wednesday everyone!

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Go Away Fibro Fog

I’m struggling to think today.  The fibro fog is really heavy today. I’m at work and trying to concentrate because I have a deadline to meet today and I really don’t feel up to working late.  Why must our brains and senses feel so foggy when our bodies are already wracked with pain?  I didn’t sleep much last night. Why must we have so many problems with sleep when our bodies crave rest? Fibromyalgia is tough. I fight through the fog and the pain every day. I stay positive. But sometimes the fibro fog wants to take over. I wish I didn’t have to work today and could’ve put on one of my favorite movies — one of the ones I’ve watched so many times I know by heart — and just zoned out. But, alas, I’m at work and I have a deadline to meet that is fast approaching. I must push through the fog and the pain and get this package out today so I can go rest this afternoon after work. I hope the fog clears soon. It’s a beautiful day outside and I long to enjoy it.

Go away fibro fog!

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Acceptance and Fibromyalgia

I found this blog entry to be a great description of what we fibromyalgia sufferers go through to achieve “acceptance.” While I think acceptance is an ongoing thing, not a period at the end of a statement, I really liked this description of acceptance and wanted to share it.

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Acceptance

A flurry of emotions arise when confronted with a life changing diagnosis, among them are fear, sadness, anger, frustration and grief. Each person handles these emotions in different ways and at varying points in the healing process. Ideally, the goal is to work towards acceptance. Acceptance, according to wikipedia.com, “is a person’s assent to the reality of a situation.” For someone with Fibromyalgia or any other chronic condition, acceptance may be difficult to achieve. How can one accept that life as they knew it, likely will change? It’s difficult to grasp.

Acceptance doesn’t mean giving up, as some may think. Acceptance involves learning to live one’s life without allowing your diagnosis to take control. This doesn’t mean that the medical conditions or the limitations it might impose disappear; it means that one has learned how to live their life in spite of these limitations.

I have faced many challenges on my ever so curvy road to acceptance. Truthfully, I’m not sure if I will ever acknowledge my illness 100%. I doubt that is possible for anyone. I’m OK with that, though because I know that there will always be times that a plethora of emotions will return to the surface. If I don’t allow the emotions to surface, it will only make me feel worse.

The flip side is that I have learned a lot about myself. I learned that the key to understanding one’s limitations is self-awareness. Awareness of what helps and what hurts, an understanding of when I am my most alert and when I need to rest. I learned when and how to ask for help. Most of all, I have learned to live my life from moment to accepting myself as I am now.

“I am not what happened to me, I am what I choose to become”. Carl Jung

via Acceptance.

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Wisdom from the Tea Leaves

My friend suggested Yogi organic teas to me.  They’re great.  I have their Kava Stress Relief and Berry Detox teas.  The stress relief tea really does help me to zone out, relax and let go of the days worries and stress.  I’m hoping the detox tea will offset some of the damage I know all of the medicines I have to take are doing to my liver and kidneys.  I really like this brand and recommend it.  They have teas to help you with lots of different things, including sleeping better which is a problem for all fibromyalgia sufferers.

The fun part of these teas is they have a bit of wisdom attached to each tea bag. So instead of a “Quote of the Day” post today, I’m sharing the wisdom I got from my cup of tea.

“Inspiring others towards happiness brings you happiness.”

–Unknown

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Timekeeper – Another Day Gone By

Last night, my husband and I went to a Grace Potter & The Nocturnals concert.  We had a really good time. Grace Potter puts on a really good show and has so much energy on stage. I love the way she dances around the stage, like she’s dancing how the music tells her to move. One of the songs they played was “Timekeeper” off their new album.  It was even better live than it is on CD.  I’ve been taken with this song and sometimes listen to it on loop.  I don’t think she had me, a fibromyalgia sufferer, in mind when she wrote it, but it really resonates with me.  I often feel like time is escaping me.  The days blur together and I can’t remember what happened when, or what day of the week it is.  When you are in pain every day, it makes the days blend together.  I have a very hard time keeping a timeline of events in my head because most of my days seem so similar due to my fibromyalgia. I don’t like the feeling that time is slipping away from me and I wish I could stop it somehow. I feel like, before I know it, another day is nearly over and I’m lucky to have just gone to work, had dinner, and maybe do one chore. This feeling is reflected in this song, which is one of the reasons I like it so much.  The other is that she asks Time Keeper to tell her everything is going to be all right. I often wish someone would tell me just that. It’s tough to fight this invisible disease when you don’t know if it will ever get better on its own accord.  I can make myself healthier and learn to cope with my chronic pain better, and thereby make my pain and symptoms better, but I have no idea if my fibromyalgia will go away one day. I wish someone could tell me that it will and that everything is going to be all right.

“Timekeeper” – by Grace Potter & The Nocturnals

Time Keeper
I can’t believe how long it’s been
Time Keeper
I wish I could start over again
I’m too young
To be feeling this way
Yeah I’m wasted as I lie awake
There goes another day

Woah, Time keeper
Please wont you slow it down tonight
Time keeper
The day days are tolling by
Time keeper
Tell me I’m gonna be, alright

Time Keeper
I thought I’d have it right by now
Time Keeper
Everything’s still spinning out
I’m undone
Breaking out of the cage
But before the beast can get away
There goes another day

Woah, Time keeper
Please wont you slow it down tonight
Time Keeper
The days are rolling by
Time Keeper
Tell me I’m gonna be, alright

Yeah
So choke the dawn and damn the daylight
Time is just an invisible line
Time Keeper
I’m hoping you hear me, tonight

Oh Time Keeper
Please wont you slow it down tonight
Time Keeper
The days are rolling by
Time Keeper
Tell me I’m gonna be, alright

Listen to the song here.