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16 Side Effects of Fibromyalgia I've Kept Secret From My Friends

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I can’t stress enough that one of the most effective ways of managing my condition is by keeping a poised and positive mindset. This has taken years of practice and focus to achieve. While some have shared their opinion that this attitude is unrealistic or disingenuous, for me it’s the key to success.

In past posts, I’ve also shared with you that I choose to eat a vegan diet 90 percent of the time. I use this same ratio for my mindset. For 90 percent of the time, I embody the disposition of a warrior: positive, poised and determined. For the remaining 10 percent, I let my guard down.

I’ve kept these secrets because I don’t spend much time talking about the negative effects of my condition. Honestly, I find that when I do, it’s hard to stop. But, with the intent that our chronic pain community is better understood every day, I’m hanging up my armor and letting down my guard. Below are the secrets I’ve kept while living with fibromyalgia, chronic pain, chronic fatigue syndrome and Sjogren’s syndrome for the past nine years.

1. There are 48 hours in a weekend. I spend 18 to 20 of them in bed, trying to heal my body.

2. Would I like to come to your party? Yes! But the hard truth is that getting dolled up on my day off is not worth it.

3. Nine years ago, summer made me think of an endless outdoor festival. Now, I think of when I was a little girl in trouble, grounded to my room while all my friends played outside.

4. “Club My Crib” is my favorite weekend hangout.

5. Every morning I fight a war with my body. My energy is sapped before I even step foot into the office.

6. For the past nine years, I have had morning sickness. Every. Single. Morning.

7. Sometimes during a flare, I think it could last forever and I feel like I can’t go on.

8. Some days the pain gets so overwhelming that all I can do is cry.

'some days the pain gets so overwhelming that all I can do is cry'

9. A flare can come like a hurricane without warning and knock me off my feet. Flares don’t care that you have to present in front of a room full of people in just a few minutes.

10. Every time I picked up my meds and vitamin prescriptions, I used to feel judged by my pharmacist. Now, he and I are besties.

11. There are nights when my pain relieving gadgets and meds just don’t cut it. During a flare, I’m lucky to get more than three hours of sleep.

12. On bad days, I’m in survival mode. I eat what I have to to get through the day…sugary treats and all.

13. It’s been raining for five days. As terrible as it is for you, my fibro body has rusted up like the tin man’s and literally cannot function.

'my fibro body reacts to the rain by rusting up like the tinman... I literally can't function.'

14. Because of the ample downtime I need, my husband and I have watched every episode of every TV series and seen every movie known to man. Looking for something to watch? Our all time faves are Game of Thrones, House of Cards and The Usual Suspects.

15. The fastest way for me to lose my aforementioned poise and positivity is when I see fibromyalgia commercials on TV. They are the worst!

'fibromyalgia commercials on TV make me mad!'

16. I am a warrior: I fight for a normal life every second of every day.

I can only imagine the secret struggling happening throughout our chronic pain community. If you feel like this is a safe place to share, I encourage you to reach out in the comments. You will find that you’re not alone. You may have the right words of support for someone who’s shared a story just like yours. Now, I’m going to put my armor back on and hope there’s a new release on Netflix.

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Originally published: April 7, 2017
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