I generally steer away from these topics. Frankly, it's because it's very hard to admit that since my car accident and diagnosis of Fibro, CFS and Sjogren's, physical intimacy has been put on the back burner in my marriage. What's even harder to digest is that my diagnosis happened just a few months after my husband and I were married, in our prime.
It's taken years for me to get to the point I am at now. Physical and occupational therapy, the right rheumatologist, acupuncture and eating 80% vegan have all led to me to what I consider to be a high functioning Fibro warrior. Though at some point in every day, Fibro wins. This is usually in the evening after an 8-12 hour work day. And the weekends are for resting- period- so you can imagine that date nights and romantic evenings are rare and for the most part, out the window.
This leads to several areas of despair. First, who wants to be intimate when every part of your body is screaming in pain and the clothes on your skin feel like they're made of porcupine needles? Second, the exhaustion with CFS is overwhelming. It's like staying awake for three straight days and being expected to operate heavy machinery. And finally, from my husband’s perspective, his only goal at the end of the day is to try and make me as comfortable as possible. Intimacy is not in the forefront.
It’s complicated
With intimacy comes the topic of children. Growing up, I never dreamed of having children. But after I fell in love and got engaged to my husband, everything changed. I wanted a baby with this incredible man. I wanted to experience him being an amazing father that I knew he would be. The image of a mini-me of my husband and me running around the house sealed the deal - we were going to have a baby.
Unfortunately, I received my diagnoses in my prime baby-making years. My body was out of control, I was extremely weak and plagued with fatigue 24/7. We had no choice but to lay our biggest-little dream aside. At least for a while.
Seven years later (just two years ago), when I felt much stronger and was coping better with the madness of Fibro, CFS and Sjogren’s, we decided to start trying. We were so excited! I smiled at the thought of having an ultrasound for a reason other than my Chronic Pain.
We played by the rules
We immediately sought the help of a fertility doctor. Now, let me explain this process. You go to the doctor several times during your cycle and ovulation so they can figure out if you have any issues with fertility. Each time, there is an ultrasound and blood taken. OK, pause. For us spoonies, at this point the day should be over. Our spoons are all spent. Problem is, those appointments were at seven in the morning. Instead of clocking out, my husband drove my broken body to work to clock in for a full work day.
Subsequently we found out that my tubes weren't open, requiring full blown surgery to open those babies up. This required many additional medications and a catheter in my body for five days after the surgery. Can you imagine the havoc that ensued in my body on top of all my other conditions? OK, on to some good news. The surgery is a success and my tubes are open, now it's baby makin’ time!
Wait… I feel like I'm forgetting something… ahhhh, yes... that darn 8-12 hour workday… that changes everything. Even before I get home, my spoons are all used up and all I can do is slip into something more comfortable (my jammies), turn up the heat (on my compression boots), and have my way with a bag of M&M’s. Romance didn't stand a chance.
Eventually, we moved to IVF. Night after night, my husband would inject me with hormones on top of additional medication. During this time, I could not use my Fibro meds. *Horrified emoji!* See where I'm going with this?
We did become pregnant only for my body to reject it at seven weeks. At this point, I was physically and emotionally spent, and so was my husband. We decided to take a few months off to handle my Fibro that was spiraling out of control from a year's worth of poking and prodding.
“Could we” and “should we”, are very different things.
At the end of a six month break, my body was strong enough to start trying again. It was then that I thought, wait, could I actually start all of this over again? After many (many) conversations and reality checks on what my body could and couldn't do, we made the choice not to try again for our mini-me. I can tell you that this was not a decision we made lightly. We’ve considered other avenues to growing our family, but where we stand now is in a place of acceptance. We’ve cut the cord to our baby dreams.
This is one of the hardest things we've had to swallow about life with Chronic Pain. There's no way to mend the heartbreak my husband and I will always feel about this. If there’s a silver lining to our story, it’s that I know this doesn't make my husband love me any less, in fact it’s brought us even closer.
I'm sharing this with you so you know you've got a warrior standing with you and standing for you. With the majority of the 100 million Americans with Chronic Pain being women, there is no shortage of amazing support groups that will welcome you with open arms. If you have been down a road similar to this, please know that you are not alone and most importantly, it's not your fault.
Me vs. Fibromyalgia” is a biweekly, one-of-a-kind series designed to give readers and warriors affected by Fibromyalgia a comprehensive look into the facts of the disease and the story of a driven, high-achieving business woman who wouldn’t take no for an answer. I’ve chronicled eight years of experience with Fibro including chronic pain and fatigue, low energy, doctors, relationships and more, and hope to offer answers and support to those who seek them.
Disclaimer: I am not a doctor. All information presented should be regarded as friendly advice and opinions based on my own experience and research. I am not making an attempt to prescribe any medical treatment and the information contained in this blog is not intended to replace a one-on-one relationship with a doctor or qualified health practitioner.
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