Why Sometimes Going Out Despite a Fibromyalgia Flare Is Worth It to Me

For the most part, I will avoid a fibromyalgia flare if I can help it. I will take all precautions to ensure that it just doesn’t happen. I don’t want to be in the type of pain that I can maybe prevent, when my body is on fire in so many different ways that I just want to scream, but even that would cause me more issues than I care to think about. Combining my sensory processing disorder with my fibro is a nightmare at the best of times.

But when it comes to things like the weekend away I’ve just had, I’m willing to take the fallout that I’m currently experiencing. I’m willing to deal with the fact that my hips have a million tiny pointy needles poking into them at odd angles, that my thighs are burning like someone has placed hot coals in the muscles, my arms are full of concrete that is slowly solidifying, and my skin is feels like it’s been set alight over every inch of my body.

This past weekend, I didn’t really get much sleep. And yes, I know that’s normal for me. I often bemoan how painsomnia stops me from having a normal sleeping pattern. But this was through choice, rather than my body keeping me awake. I was with my chosen family made up of Sci-Fi geeks, people I love, and don’t see often. I was at an event run by someone I lovingly call “uncle” and someone else I refer to as “brother.” I received so many hugs and so much love, that each and every moment of pain I’m in now was worth it.

For five whole days, I wasn’t seen as the Aspie who has fibro and a myriad of other conditions. I was seen as the friend, the sibling, the family member whom people love. The one who was asked when people couldn’t remember facts or dates, because they knew it would be something easy for me to pull to the forefront of my mind. I was reminded that no matter how low I feel, I am fortunate to have a small army of people out there who really do care. Even if, as a disabled person, it can drive me a little nuts sometimes when they seem to go overkill.

I also got to spend time with the person who, over the past four years, has talked me down more than once. The woman who has come to mean more to me than I care to admit. She has become confidant, friend, family, and so much more. And to see her smile when she looks at my arms, which are constantly clear of self-harm marks, is the best thing I can take away from this weekend past and all the weekends like it.

For three years I’ve attended this science fiction convention, run by FCD Events. For four years, I’ve gotten to know these amazing people. My beautiful chosen family. It’s a small event and it’s worth every single moment of pain I’m currently dealing with. Unlike the bigger conventions, and particularly this time round, having been introduced to an assistance dog, named Nuka, I’m able to enjoy the event without becoming so severely overwhelmed that I hide in my hotel room unable to leave.

I truly and utterly know that each and every moment of painful agony I’m now in is worth it, because the memories and the love from this weekend will fuel my mind during the times where I haven’t brought on the flares in future and I can do nothing but lie here in pain.

If you or someone you know needs help, visit our suicide prevention resources page.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by DragonImages

Find this story helpful? Share it with someone you care about.

Related to Fibromyalgia

Dear Friends, From Your Friend With Fibro

Dear Friends (Old, New, and Future), As you already know, or will know one day, I have fibromyalgia. You can Google the details if you want, but it means I am constantly in some form of pain, usually fatigued, and experiencing a ton of other symptoms that make the easier things in life feel like [...]
girl with sunglasses and hat against background with palms

To Those Who Tell Me to 'Smile!' on My Bad Pain Days

My pain on a good day seems more like background noise to me; like the sound of static you hear on the radio when the station won’t come in. The sound is rather annoying, but if your radio was broken and (for metaphoric purposes) you couldn’t turn off the radio, you could still go on [...]
Mariana with her cane.

Accepting My Pain and My Cane as a Young Woman With Fibromyalgia

I’ve had fibromyalgia for four, almost five years now. After a couple of months, or the first year, I started having debilitating symptoms. I was very stressed out, and it was a very cold, rainy season where I live. One day, when I got out of bed I felt like I couldn’t move my legs. They were [...]
silhouette of woman looking through window at snow

Why I Won't Apologize for Grieving My Second Chronic Illness

I’ve done the grief cycle at least twice before during my 13 years with myalgic encephalomyelitis (ME). I’ve even looped the loop on certain parts, flittering back and forth from acceptance to anger when a relapse hits. But six months ago I hit a boulder, a stumbling block that shook me to the core and [...]