The Ugly Reality of Living With Fibro and CFS/ME

If I see one more Pinterest blurb about “Here’s How I Cured My Fibro/ME”, “Eat This To Cure Fibro”, “How So and So Beat Chronic Illness” “Wipe Out Chronic Pain” ETC. I just may puke. It’s called Chronic Illness for a reason: it WON’T go away. I can’t cure it, fix it, help it or get better (trust me, I’ve killed myself trying). It has brought me to the brink of my sanity and to the floor of desperation. Every. Single. Day of my life is a battle and alot of times, I lose.

That is not, however, to say that I don’t recognize how incredibly Blessed I am. I have the bestest Husband in existence, three awesome kids, some kick ass close friends and a home. Oh, can’t forget my fuzzies. I am grateful to be alive and I have hope.

BUT, this chronic life is far from easy and I want to make that clear. Giving up eggplant and peppers didn’t cure me. I’ve been to dozens of Doctors, Specialists and have the good fortune of living in Massachusetts, where some of the greatest Hospitals in the world exist. None of that has mattered. I gave up meat and forced myself to try eating it again. We’ve tried anti-malarials , Epilepsy drugs and low dose chemotherapy. I’ve been on 21 prescriptions a day and only got monumentally sicker before realizing that drugs are not a cure and often make me far sicker than just my illnesses.

So let’s be clear about some of the statistics, the things they DON’T tell you about or talk about. The things that any Chronic Illness Warrior thinks about, but never really hears about. The truths that only validate and reaffirm what we feel and know in our hearts and minds. Here are some of the real things they don’t tell you:

According to Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University: “[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”

According to Health Rising: a 2008 analysis of several dozen studies found that “like ME/CFS, Fibromyalgia is more functionally impairing than ANY disease it’s been tested against”.

In a study by Frederick Wofe, Brian T. Walitt and Robert S. Katz, in 2014, 34.8% of Fibromyalgia patients are on Social Security Disability Insurance.

According to the Dubbo and Taylor Studies: only 5% of adult Chronic Fatigue patients ever recover, with 2/3 continuing to be symptomatic after ten years. Patients diagnosed at an older age have even lower recovery rate of only about 2%.

The suicide risk among Fibro patients is TEN TIMES that of the general population ***in people with no medical history of depression or other psychiatric illness***, according to Psychology Today.

So when I write, I refuse to sugar coat this life or cheerily discuss how I cured myself with Ginger Tea (insert eye rolls here). That only makes things worse and introduces the destructive, invalidating thoughts of “why can’t I make myself better”. This Hell is real, it’s awful and it’s scary. I wish I had someone here to tell me all that would happen seven years ago. I wish I had had a clear, genuine and honest perspective of what to expect-especially mentally. That’s why I write. I don’t write to whine, complain or elicit “poor me’s”, I do it to discuss the goods (They DO exist), the bads and the uglies of living a Chronic Life and hope that my experiences may somehow help someone else. Because we aren’t alone. We are strong. And this fight is real. Never undermine how difficult this fight is or all that comes with it.

~Stace

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

6 thoughts on “The Ugly Reality of Living With Fibro and CFS/ME

    1. Thanks so much for reading and commenting. I’m so happy you liked it. I felt it was important to write about what we’re *really* up against in this fight and to let some people know that the fight *really* is as hard as it feels. It gets so old constantly seeing how people “win” by doing crazy simple things. That just isn’t true and that only makes us feel more inadequate. I’m with you Delene!!!

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    1. Kim, WOW! What a compliment. Thank you so much for reading and taking the time to comment. I really appreciate it. I had really hoped to write this as exactly that, “real”, in the hopes that I could help others that way. Like you, I hadn’t really had any luck finding the truth when I was diagnosed in 2012-it would have made it a just a little easier, I think. I’m happy to have gotten your feedback. ~ Stacey

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  1. I agree about the meds. I’ve tried several things that caused other problems and did not help the fibro at all. I am currently, after resisting for a very long time, trying cymbalta. It works, somewhat. Less pain. Unfortunately, I am so zoned out that I probably wouldn’t notice pain anyway. After taking it for four days in a row, I slept or was zoned out (staring at the wall) for three and a half days. Two of those after I quit taking it. I tried one yesterday, after a few days without, and spent the afternoon on the couch with my eyes closed, not sleeping, but in some sort of la la land. Is this trade-off worth a bit less pain? I don’t think so.

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    1. Hi Jean. Thanks for reading and commenting!
      I’m sorry about the Cymbalta making you so sleepy.
      It didn’t help my Fibro when I took it-it didn’t make me sleepy though. The fatigue is bad enough on it’s own, right??
      If you can last through the side effects, I believe it’s supposed to start working 4-6 weeks in. I wish you luck, whatever you choose.
      I agree, it’s a huge conundrum!!! Pain or side effects…..hmmmmm
      For now, I’m on less medicine (not sure how long I’ll stay that way). The side effects just didn’t make it worth it for me.
      Stay strong, Jean. Great to meet you!

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