Hey there, fellow humans and internet wanderers! Grab your favourite cup of tea (or coffee if you're feeling rebellious) and settle in, because today we're diving headfirst into the wonderfully quirky world of living with Postural Orthostatic Tachycardia Syndrome (POTS) and Fibromyalgia. Yes, you heard me right – it's like having a backstage pass to the weirdest circus in town, and I'm your guide.
Now, I don't know about you, but I've always been an overachiever. So why settle for just one chronic condition when you can have two, right? POTS and Fibromyalgia decided to crash my party simultaneously and let me tell you, it's been quite the adventure.
Picture this: It's a bright, sunny morning, and I'm ready to seize the day. Well, maybe not "seize" exactly, but I'm at least thinking about it. I get out of bed, and my body decides to remind me it's playing by its own rules. POTS kicks in, and suddenly I'm passing out as gravity brings me
back down to the bed. My heart rate soars just because I dared to stand up. I can't remember waking up with energy, mornings are difficult and every movement takes more energy than normal. Every heart rate that peaks and then crashes makes me feel like I have just run a marathon!
But it's not just the standing up that's an adventure; it's also the unpredictability. You see, POTS has a twisted sense of humour. One minute you're fine, and the next, you're not fine. There's a feeling like your body is pulling you down to the floor and you have to close your eyes and rest. Mostly, I only feel okay while sitting, once I start moving around, a myriad of symptoms begin from a heart rate that feels like a racehorse, overheated, dizzy, and nauseated. I am constantly thirsty and always disappearing into the bathroom. That's my favourite magic act.
Now, let's not forget our trusty sidekick, Fibromyalgia. If POTS is the opening act, Fibro is the headliner. It brings the pain party to the next level, and by party, I mean a non-stop rave in your joints, muscles, and nerves. Sometimes, it's like having an army of tiny gnomes with jackhammers inside your body. You never know when they're going to strike or where, but they're always up for a surprise performance. The pain travels from joint to joint, just to keep me guessing.
Sleep? That's the hardest part always so tired and unable to get comfortable. POTS and Fibromyalgia are like two party animals who never let you get a good night's rest. They love to take turns waking you up, and just when you think you're finally catching some Zs, they tag-team you for a late-night dance-off. Then, there are the nighttime potty wake-ups, which are a challenge from having to get up quickly, which makes me dizzy and unsteady on my feet. so getting to the bathroom is more interesting.
But you know what? We might as well embrace the chaos. After all, POTS and Fibromyalgia are the weird roommates I never asked for, but they're here to stay. And they've taught me some valuable life lessons, like how to appreciate the little things, like sitting down for a cup of tea (or coffee, again, if you're feeling wild). They've also taught me the art of adaptation – like using whatever aids I need to use and not caring what others think. If there are things that help me get through the day and lessen my pain so be it.
And let's not forget the world of adaptive fashion. Who knew that elastic waistbands and slip-on shoes could become your best friends? Oh, and don't even get me started on the magical wonders of compression stockings. They're like a tight hug for your legs, and trust me, in the POTS and Fibro world, we'll take all the gentle hugs we can get.
So, in conclusion, friends living with POTS and Fibromyalgia is like being on a rollercoaster ride. The constant challenges involve being able to vomit gracefully and cleanly anywhere. Seriously, I am a pro! Having the ability to hit the floor before the music stops without face-planting. Constantly juggling resting and tasks in regard to pacing, while dealing with cognitive confusion aka fibro fog.
But through all the ups and downs (literally and figuratively), we find our own quirky ways to navigate this circus of life. I am making light and poking fun but it is my dark sense of humour, that helps me cope. Please understand and forgive me!
So here's to us, the POTS and Fibro warriors – always ready to laugh in the face of adversity, embrace the unexpected, and make the most of every "interesting" moment. After all, if life gives you POTS and Fibro, find a way to keep laughing.
At least I have the comfort of diagnosis and now I know what I am dealing with. I am continuously learning from others who are coping with the same issues and building a virtual community. I encourage others in similar circumstances to open up and make connections with others who understand. Today, I am resting from the holiday weekend and letting myself recover. I don't feel guilty. You should not feel guilty either when you need to rest! Recharge your batteries and start again. I am always here and open to emails, don't suffer alon