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the “f” word…

So… I’m just going to say it. I mean, I’ve hesitated to put this out there, but at the end of the day, I’m doing no good in the world by keeping this all to myself. The need to communicate this, to put it out there, to have a chance of finding connections that can lead to healing… and to somehow just get this all off of my chest and out where it can take its own shape… it’s a very real scratch that I had to itch. Here we go…

A few weeks ago, I met with my doctor to follow up with some medication I’d been on (and hating, by the way, I practically begged him to take me off of it…) and the course of our conversation led him to do a screening involving some key pressure points on my body. He pressed them, I tried not to scream out in pain. And it was determined from this screening, along with a series of questions I answered, that I have fibromyalgia.

Fibromyalgia… well, it could be worse. I could have cancer. That said, sometimes cancer is curable and fibro… isn’t. It’s not a death sentence… but it does kinda suck that my whole life is going to feel this way… Fibromyalgia. Hm.

I’m actually  familiar with this one. A couple of my dear friends suffer from it. A member of my family does, too. But, I’ve never really understood it or tried to learn enough about it to really “get it.” I’m an obsessive researcher, so I immediately began digging to know more about the invisible monster inhabiting my body. And everything I found, at first, shook me up so bad that I couldn’t research for long. There’s something startling about reading about all the ailments and issues that you’ve had for years, and to realize they are all connected and they all have one name… Fibromyalgia.

I found this infographic and chose to share it because it covers every symptom that my fibro presents itself as… other people may have fibro that evidences itself differently. But, this list is pretty all-encompassing, and does a pretty spot-on job of defining what I’ve been experiencing in varying degrees for at least 10 years, but probably closer to 20.

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I’m a very verbal processor. I’ve found it hard to talk about this since receiving my diagnosis – I don’t want to bring more attention to my limitations and imperfections than is truly necessary. I don’t want to come across as a whiner, and I certainly don’t want to burden my husband with my every ache and pain. That said, I haaaaaave to process. Have to. So, I challenged myself to come up with 5 things I wish I could share with my closest friends and family, so they could maybe understand me better. And, like every normal Gen-Yer, I am sharing it online instead of trying to hash it out in private conversations. There is a method to my madness… writing has always healed me and being open when I want to shut has never failed me, either.

So here’s my list. Five things I wish I didn’t have to explain, but that I also wish you knew about me. In no particular order, and randomly selected from the growing list of hundreds of things I’d like to say…

  1. After I shower, I have to sit on the edge of my bed for several minutes, sometimes even a half hour, before I feel well enough to get up and dress myself. Some days I can push through it and others, I’m completely defeated by it. This is just one example of how I am easily and chronically fatigued, every single day. I look tired because I am tired, and no amount of sleep or rest has ever helped me to feel fully human.

  2. I’m never good enough. I have an insatiable need to push myself further, harder; to be better and to do more. Holding myself to ridiculous standards is nothing new – I’ve struggled with perfectionism for many years. I’m realizing this is a symptom of my illness, my need to accomplish and achieve… I can’t succumb to the weakness that I’m reminded of physically, day in and out. So, I stay overly busy and can’t accept mediocrity, I push myself to the point of neglecting what really matters… this has become one of my greatest inner battles. Striving for a simpler life has helped calm this thirst for “success at any cost,” and I’m finding peace and joy in that simplicity. It’s hard, though, because just letting things be does not come naturally to me.

  3. I want to want hugs, but honestly, hugging hurts. And I hate it. This has nothing to do with me not being an affectionate person – I want to be a hugger. I used to be a hugger. I will hug you because I love you, but I will not hug more than necessary. It hurts. And I also get “touched out” very quickly. I’m learning this has to do with an overstimulated nervous system, and I’m hoping I can find ways to control it because as a mom of three young children, I often have to pretend that I am not touched out… and it’s exhausting.

  4. I have struggled with anxiety and depression for my whole adult life. I’m only now realizing that much of this has to do with my physical pain and the scenarios that magnify it. One of the greatest anxiety triggers I regularly face has to do with having something scheduled, having something on the calendar. I have finally figured out why… actually, my husband figured it out and I think he’s right… His theory is that looming appointments wig me out because I don’t know how I’m going to feel on, say, Wednesday at 7pm. So, having a photoshoot or a party to go to or a girls night out completely freaks me out… for days leading up to it, and the day of I’ll completely shut down just knowing the scheduled time is looming ahead of me. This is the worst, nothing makes you feel more like a crazy person than being unable to get off the couch because you have an appointment in 5 hours.

    I want to be able to do the things I commit myself to, but I occasionally flake out simply because I do not feel well (or, my brain fog is so bad that I completely forget I had committed to anything in the first place) so I often make excuses to avoid committing to things that I know are going to end up being an issue. And that has made for a very lonely adulthood, one that I have struggled to reconcile with who I feel I am inside (a social, loving, vibrant young person) with who I am physically (a reclusive aching old lady). I’m also finding that who I’m perceived to be is heavily influenced by the physical pain I’m constantly in…  I’m still processing this, and finding ways to overcome the real struggle that comes from feeling like total crap 99.9% of the time.

  5. I’m not as broken as I sound, and I hesitated to put this out there because the last thing I want is anyone, ANYONE, to think that I’m a special case that needs special treatment or that I’m somehow less of a human being because I don’t function properly. I won’t let fibromyalgia steal my life, and I don’t want it to overshadow the really good things I have going on, either. It affects my life, but it is not my life. I’m in the middle of learning and processing what this all means – that means that right now,  fibro is a huge part of how I’m spending my time – in the researching, discovering and learning. I’m connecting dots that explain periods of my life that at one time left me feeling incredibly disappointed in myself – where, now, I can see that fibro was playing a huge roll in those failures or struggles. The diagnosis is new, but the pain is not new. The diagnosis explains things about me that I felt embarrassed or freaked out about. I’ve found so much peace in the fact that I’m not just fat and lazy… but that I truly am ill and with the knowledge I’m gaining about this illness, I have a chance of living a fuller and more unlimited life.

I recently shared my fibro diagnosis with my Usborne Books & More leadership team. These women have become such rocks to me, and I felt compelled to help them understand me better. So, I opened up to them and explained a bit about my diagnosis. That night, one of my leaders sent me a heartfelt message explaining that her mother-in-law has fibro and is heavily involved in research and education of this illness. A few days later, a book arrived in my mailbox, a gift from my sweet friend. That book, The FibroManual by Dr. Ginevra Liptan, has become my best-book-friend in the past few weeks. I’ve cried over passages that explain so much about my history and where I am now. It’s a book that’s given me hope that while there isn’t a cure, I can learn to manage fibro the best I can through diet and exercise, among other practices in mindfulness, etc. Here’s a passage from the book that has helped give so much meaning and purpose to this illness for me:

“I am done feeling ashamed. My hypervigilant nervous system keeps me attuned to subtle changes in other people’s emotional states and in my environment. It has helped me to become a better doctor. And my intimate experiences with pain and suffering have made me a better human being.”

 My intimate experience with pain, my walk with these limitations, is helping me to be more than I could have been as a healthy version of myself. In a way, this curse is actually a blessing, and I’m choosing to turn my face to the sunshine and cast the shadows behind me. I will use this to be a better wife, mother, daughter, friend… I will not let it break me and I won’t let it define me in terms of my limitations. Instead, I’m finding strength beyond my own and I know that I will be okay. I will, because I don’t have a choice. This life is too good to simply endure it… I’m here to live it. This diagnosis gives me a place to start, so I can truly live this life to its fullest.