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How I'm Still Living a Life I Love With Fibromyalgia


This month, I’m lucky enough to celebrate another birthday, and every year on my birthday I like to have an adventure day to celebrate the fact that I’m not dead yet, and there is still lots of life out there to live and experiences to enjoy. It’s a day I take for myself to celebrate having made it this far and the possibilities the future holds.

As I’m sure you can tell from my dedication to an annual adventure day, I’m a person who likes to explore and see new things and have adventures. But my body is making the ability to do those things more and more elusive, especially as time goes on. Living with a chronic illness like fibromyalgia means adjusting to the changes that inevitably come with it, and my love of adventure is one of those things that has needed some adjustment. For me, having fibromyalgia (along with a few other health concerns) means I don’t have as many adventures or experiences as I used to, or as many as I would like, but it doesn’t mean those experiences can’t be had — it just means they need more planning.

My days of waking up, leaving the house, finding adventure, then going home without a thought or a plan in my mind are long gone. I’ve had to adjust to the fact that in most cases, even a single day of successful adventuring requires tremendous planning before, during and after. First, I must prepare in the days and hours before the outing or adventure — drinking lots of water, getting enough rest, implementing ice/heat treatments and medication if necessary to make sure my odds are as good as possible for it to be a low-symptom day.

Then there is the preparation for the adventure/outing itself. How long will I be out? Will it be indoors or outdoors? What is the weather like? Do I need a change of clothes? Is it a high-energy activity or low-energy activity? Is there plenty of seating/places to rest throughout the day? What medications should I bring? Do I need on-the-go snap-activated ice packs, snacks, extra water bottles? Do I have a purse big enough to fit all the things I need (and that matches my outfit)? Do I have a safe place to keep an extra bag of supplies so I don’t waste precious energy carrying a heavy bag? I have to plan for a lot of contingencies these days, and lists are a must so nothing gets forgotten.

Let’s not forget the preparation for recovery from said adventure/outing. Do I have enough food in the house for the hours or days said recovery will take? Enough medication? Is take-out an option if I don’t have the energy to cook or are there left-overs I can eat? Do I have enough clean laundry to get me through my recovery period? Are there any obligations that cannot be put off and need to be planned for if recovery takes longer than I think it will? The list goes on and on.

Despite all of this, I’m so thankful that I am still able to go out and do things — even if it takes a lot of planning, even if I’m not able to go out or do as many things as I would like, even though I have to recover from going out in the first place. It’s important for me to take the time on my birthday to celebrate my life and where I am in this moment, including the lists, plans and contingencies. It is critical for my mental health to remind myself that just because I have fibromyalgia doesn’t mean my life has stopped. I can still find ways to enjoy my life and show up for myself in a way that makes me happy. It reminds me that I am still me.

A lot can change when you are diagnosed with something like fibromyalgia, but that doesn’t mean you can’t continue to live a life you love. Even if you have to make a few adjustments to get there, you can get there. I believe in you.

This story originally appeared on The Fibro Strong Collective.

Getty image by Lucid Surf.