Getting back up

As a kid, my grandparents and parents always taught me to be strong, to never give up. Yes, sometimes they would say that I was just plain stubborn. I would always reply that I am just tenacious. But, somehow along the way, Fibromyalgia had beaten me down. It was a slow, steady beating. The type that you really don’t notice, until you realize that you can’t get back up. I would try something. Fail. Get back up, and try again. After awhile, I gave up trying as hard. I lost that tenacity, my stubborness. I could not get back up.

Then, about two years ago, the bull in me called BULLSHIT. My Daddy didn’t raise no fool. Why was I being one? Why did I roll over and play dead? Shit, I ain’t dead yet. I just have Fibromyalgia.

So, I stood up. Dusted myself off, and tried again. But that’s a whole other story

Today, I am thrilled to say that I am off of all my medication. Yes, all. I still have a few fibro flares, but they are only fractions of what they used to be. Yet, that fear of falling down and not being able to get back up is holding onto me with more strength than I care to admit.

Last Summer, I went to climb Half Dome. Well, I should say tried to climb Half Dome. I pushed it on the hike by trying to keep up with my hiking group, and by the time we reached the sub-dome, I fell down and couldn’t get up. Actually, my body plain gave out. I started seizing and an overwhelming pain ran throughout my body. I’m sure on the outside, I just looked tired. But on the inside, I was screaming with all my might in pain.

Though somehow, I did, I did get up to try again. I made it back down the mountain and continued to fight to improve. As soon as my two week long pain attack ended after Half Dome, I placed another physical goal in my sights — I booked a trip to hike for five days in Peru. Don’t ask me why I went from not making a 22 mile day hike to booking a high elevation, almost week long hike in another country. But if you are gonna live, you might as well give it all you’ve got. Right?

Next week, I am off to Peru to hike to Machu Picchu, five days of hiking in fact. My emotions are all over the place. I’m excited. I’m thrilled. But most of all, I am scared to death. And, this fear is eating me alive. It’s starting to eat away at the joy. What if I fall down again? What if I can’t do it? What if I have a pain attack on day one? Tons of what ifs. And this time, I am doing this with perfect strangers.

Then, I remember that I am in that stage of my life of  called “after I no longer accepted that I couldn’t do it.”  So, I’m getting up. Packing my bags and facing my fear head on.

Here’s to living! See ya when I get back.

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Things to Remember When You Have Fibro

After living with fibromyalgia for over a decade, you’d think that I have this condition all figured out. Right?

Well, not quite. I still have to remind myself a few things. So, I made a lil’ deck to help myself and others remember the simple things to help cope with fibromyalgia.

Do you have fibro or chronic pain?

I’d love to hear what simple reminders help you out. Please let me know in the comments below.

The Super Villains Of Chronic Pain

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One would think that the main super villain of chronic pain is actually the pain itself. That’s not the case. Pain is only the catalyst to an evil plot that inflicts harm and discord. The true evil in this tale are pain’s band of super villains. The actions of these super villains reinforce fear and uncertainty in an already unstable world, thus continuing the physical and emotional pain into a chronic state of chaos.

Introducing the real super villains of chronic pain:

The Green Goblin

This super villain loves to spread a feeling of ill appetite and nausea. No matter what one eats or drinks, there is zero rhyme or reason as to when and how much The Green Goblin will strike. Medications and acidic foods help his power increase with intensity. Mint, ginger and other herbal remedies are sometimes your only defense against this opponent.

The Deadly Taint

Usually striking a few days before a full-blown pain attack, the Deadly Taint can hit hard and fast. Sometimes, the Taint’s powers can last throughout the entire pain episode, where as other times this villain comes and goes with ease. Soft toilet paper, wet wipes and a book in the bathroom can lesson the unease of the Deadly Taint’s attack.

Sleep Monger

The Sleep Monger’s name is cursed most often during the wee hours of the night. The Monger’s main power is to keep you wide awake no matter ow much you want and need to sleep. Defensive measures such as a warm glass of milk, a lavender bath, a dark room or the most comfortable of comfy beds is no match for the Monger’s evil need to keep you awake. Some say that the Sleep Monger owns stock in silly late night TV shows and AngryBird. However, reports have never comfirmed this to be true or just a rumor.

The Fog

Known to many as Fibro Fog, this super villain attacks when a fibromite least expects it and needs it. (For example, it just attacked me. I had to spell “least” five times before I actually typed the correct word.) The Fog is known for its inapt ability to place your keys in the freezer, milk on your toast and butter in your tea. Task lists and keeping a schedule is the best way to combat the Fog.

The Gloom Gang: Doctor Doom, Mr. Solitude and Shade Master

This gang leaves a trace of melancholy in the wake of their destruction. Members of the Gloom Gang can attack on their own, but they tend to hit all at once or in succession of one another. A Gloom attack usually starts with Mr. Solitude forcing a fibromite to be alone in their pain. Next, Shade Master spreads the fear of the pain with no bight end in sight. This feeling of fear and hopelessness is the Shade Master’s supreme power that helps Doctor Doom lay his path of depression — a path that would make Poe look to be a frolicking happy-go-lucky poet.

The gang strikes best after a fibromite has been fighting all of the other Super Villains for an extended period of time. The Gloom Gang also will speak through idiotic doctors, family and friends by whispering “It’s not real.” Only a fibromite’s best friends and skilled doctors have the weapons to fight The Gloom Gang. Their weapons exist in everyone, but few use them to help fights.  Weapons such as patience and offering help even when it’s rejected are key to killing the gang. A fibromite can cause the gang’s demise by finding joy in the little things.

What weapons do you use to kill this unruly gang of super villains and gloomy miscreants?

Stay or go? Adjusting to Fibro in a Relationship

images-1When you have been dealing with a chronic illness for over a third of your life, it becomes a part of you. It’s your version of normal. However, it’s only your version, not everyone else’s. And, this is never more apparent than when you are in a relationship.

No one ever tells you that once you find someone who loves you, they might not love the challenges your relationship will face because of  your health. At first, the symptoms are manageable and don’t seem that bad, the therapies don’t really interfere with your relationship—no biggie really.

Yeah, you’re not normal, not fully healthy, but it’s manageable. At some point though, the reality sinks in: this thing is going to be around for awhile, it will impact your relationship and there are no guarantees.

Then the bomb hits. You think you have someone who loves you for you, illness and all. You have to live with this, and they don’t. There’s the dilemna-do they stay or do they go? Do they face your illness’s challenges with you or not?

No one can fully understand what you suffer with everyday, your trials and tribulations. How you can be perfectly fine one day and in agonizing pain the next day? Especially when you have fibro, where others can’t “see” your pain.

How do you make them see what you are going through? Or how do you learn to set them free of your pain? I fear that I will never be strong enough to answer those two questions.

Coping With Extreme Weather

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Life is short, so I try to make the most of it. Try new things, venture to new places, and go boldly where no sane person with Fibro would ever go– the Black Rock Desert.

Call me crazy, but I really just wanted to see if my body could handle it. So, I packed up my things. Crossed a few fingers. Hoped for the best, and ventured out to the desert with my boyfriend.

Here’s what I learned in my 72 hours of desert sanctuary– DON’T DO IT! Nah, just kidding.

If you must put yourself in extreme weather conditions, like the 102 degree weather and utter dryness of the Black Rock Desert, try to follow my top 10 tips to survive:

  1. Stick to a routine. We all have our normal routines at home. Try not to change it. This will help your body adjust to the weather conditions.
  2. Take your meds as planned, even if your routine is a little off. I woke up with the sun (at 5-f-ing am)– 3+ hours earlier than normal. I tried to take my meds at 8:00 am, just like I do at home.
  3. Stay covered. It seems simple, but staying in covered from the direct sun helps. I wore a SPF 30 rated long sleeve shirt to protect myself. The last thing I wanted to deal with was a sunburn.
  4. Stay hydrated. Again, it seems simple. We all have meds which can cause us dry mouth. It’s hard to take care of cotton-mouth and stay fully hydrated. Try a variety of drinks- cold and “room” temperature. Also, try to avoid taking any meds that just add to dehydration– for example most opiates cause dry mouth.
  5. Try new therapies. When my body aches, a heating pad or a hot bath always helps. Yeah, like that was going to happen in the desert. Hot therapy does not work when it’s already f-in’ hot outside. I found that cold helped and sleep.
  6. Take every chance to keep your body cool. I froze drinks and took trips to the lake to enjoy a lil’ fresh water. Though, what I really wanted was a cold ice pack for my neck. Maybe, next time I’ll remember to bring one. 
  7. Stay away from alcohol. Yeah, learn from my mistakes. I had some scotch with the boys, and I regretted it the next day.
  8. Keep on your diet. It’s hard to stay on your diet when you are in the desert with limited supplies to a produce market. However, if you pack well, it’s easy to plan ahead.
  9. FInd a quiet place. This seems silly when there was desert as far as the eye can see; however, having some alone time helped me center. At one point, my hypersensitivity kicked in,and everything bugged me. All I needed to do to gain control again was step away from the party.
  10. And my last tip… Book a hotel in the desert- like Las Vegas– and then go to the spa! 🙂

Hopefully, these tips will help you on your next camping trip to the desert. (The last tip especially.)

Exercise- The Final Frontier

My fibro is definitely better than it was 10 years ago. However, it’s at a standstill as far as improving. My wonderful doctor said that I need to exercise more- oh boy, just what I wanted to hear. Apparently, the best exercise for fibro is cardio. And here I thought simple stretching like yoga was key.

So, for the past month, I have been trying out cardio to help my fibro. I’ve been speed walking about 2-3 miles every other day. Depending on how I feel, it usually takes me 1/2 an hour to a full hour.

But, just like any treatment routine it has it’s ups and downs.

Downs:

  • Hard to keep routine. Every few days I get a pain attack at night– usually after 3rd day of exercise.
  • Waking up and getting my ass going in the am.

Ups:

  • I’ve lost weight.
  • I have more energy most days.

All the ups and downs aside, I’m continuing to try this exercise routine out for at least 3 months. I have found that 3 months is key to figuring out if a new treatment program will work or not for my fibro.

What about you? What exercise routine works for your fibro? Please let me know in the comments below.

2 Sides of the Coin

Today is like any other rainy Saturday. I’m just sitting hear playing around on the net while trying to distract myself as my fibro pain remains at bay. However, I know that any second now the pain is going to hit above a level 7. Oh boy, what fun! So what do I do but torture myself by reading articles on FMS. Yeah I know- I’m smart.

However, I found an article that caused me to wonder. Turns out that the American Chronic Pain Association (ACPA) and Forest Laboratories Inc. just published some interesting results from their recent surveys- “Two Takes on Fibro: Public Perceptions and Private Realities” – designed to gather views about the condition from the general public and fibromyalgia patients themselves. 1,022 adults from the general public and 1,215 fibromyalgia patients were questioned as part of the studies. (via)

The results fascinate me because I don’t think that I’ve ever asked many of my friends about their perception of FMS or how I deal with it. According to the surveys, this is not uncommon. In fact, may of us feel that others see us as weak- hence why we hide our illness from some. The results show that the general public see people with FMS as courageous- a surprising 41% of them. And, only 17% of FMS patients feel that this is the case.

With me, it depends on who I’m calling the “general public”. People who know me personally who see my ups and downs- sure, I believe that they see me as courageous. However, those people who do not understand or worse yet, don’t even believe the existence of FMS- I think they only see my life struggles as failure. Makes me wonder just how do my friends see my illness. How does my family? My co-workers?

The surveys also showed the impact that FMS has on our lives. 

Career and Work

• 60% of fibromyalgia patients said they take more personal days or sick days.
• 70% said they have trouble completing work-related tasks.
• 56% reported that their personal income has declined due to their symptoms.
• 61% disclosed that their work life was more difficult due to fibromyalgia.

Intimacy and Romance

• 64% of fibromyalgia patients reported intimacy difficulties.
• More men (56%) than women (48%) found it difficult to be physically intimate with a partner.
• 15% of women and 25% of men reported not being able to sleep in the same bed as their partner during a fibromyalgia flare up.

Everyday Activities

• 71% of fibromyalgia patients disclosed having difficulty cleaning, vacuuming or doing yard work.
• 58% reported difficulty taking out the garbage or carrying groceries.

I wonder if I took this survey, how I would answer. My life has so significantly changed since my FMS onset, that I really don’t see difficulty with work or daily tasks. Some activities I just don’t do anymore. Like yard work- why bother when I can be out having fun on good days.

So I ask you friends, family and strangers-

How do you see people who have fibromyalgia?

Secrets that I keep

I’m nobody! Who are you?
Are you nobody, too?
Then there ’s a pair of us—don’t tell!
They ’d banish us, you know.

How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog! ~ Emily Dickinson

There is a secret I keep.
I store it away deep inside me. Forever fearing that it will be told to another. This secret causes many trials and tribulations in my life. For if it leaks out, how will people look at me? Will they treat me differently? Will footsteps tread lighter around me? Or will they walk away from fear of the unknown?

My secret can’t be seen.
It can’t be touched.
It can’t be heard.
Then, how do I describe my secret to others?

I get the courage to face my fears, to share my story, and to slowly unveil my secret. Then, it becomes possible to even explain.

Use Twitter #hashtags to find support

You can use Twitter hashtags to find people, organizations, and research. They are a wonderful way to organize tweets, find people with similar interests, and find topics that appeal to you.

@fibroflr


You can also follow my tweets @fibroflr

However, like anything, too much information of one thing can be a bad thing. Mark Twain said it best- “Be careful about reading health books. You may die of a misprint.” I like to remember that whenever I do research on the internet. I should just have it inscribed on my laptop in bold letters!

Here are a few #hashtags that I like to follow and search on Twitter:
#fibro
#fibromyalgia
#pain sometimes this hashtag will produce too much
#FM short for fibromyalgia
#FMS short for fibromyalgia syndrome
#spoonies great to use just to chat with fellow fibro people online
#FF Follow Friday- an event that happens on Fridays, people will tweet out who they recommend to follow. It’s a great way to learn which users to follow.

For more info on how to use Twitter #hashtags, read Mashable’s post on the topic.

Approach

We all have those days. You know what I’m talking about it. The days that begin at a level 4 but end at a 10. The days that you find yourself curled up in a ball, whimpering for it all to end.

And it will end. That’s the thing with fibromyalgia flare ups, they comes and goes in waves. Your stress will end. The cold rainy weather will pass. And yes, your mother-in-law will return home. The trick to surviving it is your approach. I try to do it with laughter. And on that note, I leave you with this:

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