Tuesday, June 14, 2016

Bullies Suck

Fibromyalgia is not the easiest chronic disease with which to live. It is also not the most difficult. Point is, fibromyalgia is real and it is no picnic. When you are surrounded by a bully or two, it's even more difficult. 

Yes, fibromyalgia is real. It's the name someone came up with for the symptoms when there was no other name. I suppose I should say, the symptoms are real. I know because I suffer from quite a few of them. Though not nearly as badly as some other folks I know. And I'm quite grateful for that because if mine isn't that bad, I'd hate to know what the bad cases are like.

For those of you who don't know, fibromyalgia is characterized by:
  • restless sleep
  • serious morning stiffness 
  • terrible headaches
  • tingly and numb hands and feet as well as pain
  • memory loss and foggy thinking
  • tender points which make touch painful
  • widespread pain throughout the body
  • awakening feeling tired
  • chronic fatigue
  • anxiety
  • depression
  • disturbance in bowel function
  • sensitivity in all five senses

Not a short list. I have, and still experience, each of the symptoms listed above. It's exhausting. You can imagine what getting up every day of the week to go teach elementary students was like. Some mornings weren't that difficult. But you never know how you'll feel or how the day is going to go when fibromyalgia is your partner. 

Having to go to school every day was both a blessing and a curse. A blessing in that it made me get up and go regardless of how I felt or the level of pain on any given day. A curse because it made me have to get up and go regardless of the level of pain on any given day. It's not easy to go and be your best when pain is screaming throughout your body. But I also tried to keep everything in perspective. I may be living with chronic pain but I am not suffering from a disease that can have fatal results. For this, I am grateful.


Am I looking for sympathy? No. I hate being pitied and I hate being the center of attention. I am not a fan of attention of any kind- good or bad. I don't play the victim. That's why a lot of people have no idea that I even have fibromyalgia. Another reason most are unaware is because of the fact that some of those who do know are not always kind. I've been called lazy and stupid so many times I have come close to believing it. Close. But there is enough of me to know that I am neither. I've been told I hate fun and that I hate my job. Nope.

I cannot walk into a store where perfume is sold because the smells burn my nose and I can taste it just from smelling it. This leads directly to a headache. Same with being around people wearing perfume. Or smokers. UGH. So, I have to be careful where I go and how close I stand to people. Loud noises can reduce me to tears. Putting on lotion (whipped coconut oil) can hurt as does brushing my hair from time to time. Bright lights cause me to close my eyes so I'm careful about driving. None of my soaps or shampoos etc. can have chemicals in them. Life is interesting.    

Those of us who suffer from fibromyalgia are not lazy. We do not hate our jobs. We are not social introverts. We do not hate fun. We are in pain most days and we have no energy. Everything affects us in a painful or uncomfortable way from bright lights and loud noises to a gentle touch to just standing up or sitting down. 

I have lived with fibromyalgia for 16 years now. Unfortunately, I've noticed that it has gotten worse over the years. Not horrible, but worse. Or maybe I'm not as good as faking it these days. There are times I forget I have fibromyalgia and I drive myself crazy trying to figure out why I'm so tired or why I lack motivation or why everything hurts. And then I remember, it's fibromyalgia.


I didn't cover as much as the tip of the iceberg, I'm sure. However, getting information out there is helpful no matter the amount. Next week, I'll share what I've found helps me deal, when I deal. And that's another thing about fibromyalgia. It can zap you of your energy and motivation to the point you just do not deal with it some days. There are some things, however, that do take the edge off and I'll cover some of those next time. 





  



12 comments:

  1. AMEN, AMEN, AMEN!! FIBROMYALGIA JUST SUCKS PERIOD! SUCK AND SUCKS THE LIFE OUT OF YOU! BUT IT WILL NEVER SUCK MY SENSE OF HUMOR AND MY DIGNITY.

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    1. No it won't! You are my inspiration for fighting, Barb!

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  2. Hi Pam,
    I never knew you had this. You have never let on that you have to go through this every day.
    Very informative. I bet it was hard getting up for school every day. Thank you for sharing.

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    1. I try to keep it to myself but now I'm wondering if it isn't better to get my story out there. Maybe I'll help someone, maybe not. It's worth a try. :) I just ordered a beginners rug hook kit. When we get back from Nashville, let's try to chat either on Facebook or maybe even Skype???

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  3. I don't have it, however, I do have permanent nerve damage on my left side...not that I suffer the same symptoms, but enough to closely resemble...keeping you in prayer.

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    1. I think I knew and didn't know about that. I can't remember from one day to the next sometimes. Have you found things that help you? I'm going to cover a few things that work for me next week.

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  4. Hi Pam. I have a couple of friends who have fibro, so I know it is not fun. I can't be around perfumes and strong scents either, but because it causes migraines for me. Joe was diagnosed with fibromyalgia years ago. He stopped drinking diet cokes (6-8 a day!) and it gradually went away. Perhaps the diagnoses was incorrect, but that's his story. I hope you have found things to help make life a little less painful.

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    1. Migraines are awful! I don't know how people get up and go to work with those. They would knock me off my feet for sure. There are a couple of teachers at school who suffer with those horrible things but they show up anyway. Which always amazes me. I have found a few helpful things and I'll post those next week. Thanks!

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  5. Ok good thing you are not looking for sympathy because I have none, ok that's a lie I do have some any if you wanted it you could have it, just saying. It sounds like a terrible condition to have but many people have terrible conditions it is how people deal with said conditions that matters, some rise above it and some drown in it, also just saying. You my friend are bloody marvellous but I am sure you know that already

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    1. Nope, never do. I don't like playing the victim but I do believe in getting information out there. I agree, it is how we deal that makes the difference. I think I'm just too stubborn to give in. Ha! You're too kind! Thank you!

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  6. You are my hero Pam. No I know that's what you want but really you are. I love reading what you have going on here and over at your other blog and each time I read I learn something new. I suffer from migraines due to nerve damage in my head from an accident long ago. Not the same at all but learning to deal is something we share.
    I will love to read how you deal at times and just maybe I can learn some more along the way.
    Take care my friend. Blessings!!

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    1. Funny- I always think the same thing about you! :) Those migraines are awful. A couple of teachers at school have them and I never have figured out how they come to school anyway. I don't think I could do it. Learning to deal is important. I'll post some things that work for me next week. Hope you're getting some down time this summer! Take care!

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Welcome, friends! Please spew forth some wisdom for me. I'm quite certain I need it!