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Why It's Hard to Stay Positive During an Erythromelalgia Flare

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Sometimes staying positive while living with chronic illness is one of the hardest things in the world…but I try.

Every time I post about any of my medical issues on social media, I second guess myself, delete, don’t end up posting, decide it’s not professional, or worry that people will think I can’t do my job – or manage my life if they knew just how bad it sometimes is.

Which doesn’t make sense, because I usually rock my life and my job. I push myself through and always do more than, not less than.

There is also an awful feeling of embarrassment. It’s weird, but people with chronic diseases feel shame over their diagnoses, because we are made to feel shame (often because of family, friends, doctors, or strangers), like it is our fault that our bodies have betrayed us. Like if we just ate better and exercised more, all our issues would go away. Like we have to be exaggerating, even though it is obvious we aren’t. It doesn’t work like that. God, I wish it did.

And on days like today, when I woke up this morning and knew immediately with the first pressure I put on my feet upon standing that a huge monster flare was starting, it freaking sucks. Let me be clear, I flare multiple times a day every day from Erythromelalgia, along with a myriad of other illnesses. There is a huge difference in daily flares and monster flares.

Daily flares suck, and they suck bad. It’s the burning pain of hell with all the symptoms of monster flares to a lesser degree, but usually not all at same time. Daily flares can last anywhere from five minutes to hours, and they can happen anywhere from one to 30 times a day — excruciatingly sucky, but since they usually do end after a while, somewhat bearable.

But monster flares last for days with no breaks. They take every part of my body and ruin what it is supposed to do while laughing gleefully and setting things on fire. They take all my illnesses, mix them up, and slam me with all the worst parts at the same time.

Some parts of me are burning hot and flushed red. So hot it is like being burned inside out by hot lava. Submerged in acid. Burned alive. Face and ears are the absolute worst. I can barely think through the pain.

While other parts are so cold they are purple and painful. Nothing will warm them up, and when I try, it just makes the parts of me that are burning worse.

Any kind of pressure will make me flush. Arm against the sofa, leg against another leg. Red, burning pain that shoots flames through me.

Chills cover entire body constantly, even on hot spots, which is a very unpleasant feeling. Shaky and sick feeling.

I’m occasionally nauseous, sometimes dizzy, vision can go blurry, ear pressure and ringing, every muscle and joint hurts, head is splitting.

Blood pressure and blood sugar drop low while my heart beats about a million miles a minute.

Last check:

Blood Pressure: 92/63 (flashing the irregular heartbeat icon)
Heart Beats Per Minute: 121
Blood sugar: 58

And that happens all the time. It’s a trifecta of making me feel awful. The up and down roller coaster is debilitating.

And my skin! It’s so sensitive that it is like having the flu times 10. I don’t even like to touch my own skin because it hurts. Clothes hurt. Air hurts. Everything hurts.

Swelling — my veins pop, swell, and are extremely painful. Sometimes, my blood vessels will even pop, bleeding painful bruises under my skin. I get superficial blood clots in my hands and feet. Lumps of pain. Anywhere that is on fire is swollen – but my hands balloon until they feel like they will burst. Swollen painful lymph nodes.

Fluid around my joints. Stiffness. Heat. Pain. Dislocations and sublexations.

Typing while working sometimes feels like smashing my fingers into boulders, even if I’m barely touching the keys. Finger guards help, but not enough.

Muscle pain that feels like I decided I could lift weights and spent 24 hours lifting twice my body weight. Can barely move them without wanting to screech.

Pins and needles sensations stabbing throughout my extremities.

It’s a complete nightmare from the top of my head to the bottom of my feet. It’s hard to think past it. Even laying in bed is awful. Sleep is next to impossible. When I do sleep, it’s fitful, tossing and turning and waking up constantly.

It makes me desperately want my regular flares back, because how did I ever think I couldn’t handle those when I sometimes go through these?

And yet, even during these, I still push on. If something has to be done, I do it. If a kid needs to go somewhere, they get taken. If I have to sit through a sports game, I’ll do it. I work the day after surgeries. During flares. I’m a mom 24/7. If there is a rush due for work or something a kid needs, it gets done. And done well. Period. No matter what. Because that’s who I am.

But if I do have time where I don’t have anything pressing to do — or in my case, I worked more than half the day and got to a stopping place — I try to remember I’m still lucky, I’m still here, I still have a great job, great kids, a great life. That I am more than my medical issues, more than my rare diagnoses, more than people’s opinions and judgements, more than the pain, the frustration, and the helplessness.

I am me. I am a daughter, a sister, a mother. I’m a friend. An editor. A fighter. A survivor. A warrior.

I’ll be all right. But as I fight through this awful flare, I try to remember that some others have it worse. Some have it better. But we all have to live through something.

While I’m writing this, I’m reminded that this month, May, is Erythromelalgia Awareness Month. It’s one of the rare diseases I have, and it’s the worst one in my opinion.

I’m sure I’ll be posting some of the info and challenges to raise awareness. Knowledge is power.

If you aren’t interested in my journey or rare disease awareness, that is perfectly OK! Feel free to slide right past the posts.

If you are, thanks for your support. It means the world to me.

The one thing I’ve noticed about the chronic disease community is that most of us do not want sympathy. We just want want people to understand. We want to inform. Get the word out there. Help others who may be struggling who didn’t know what they were struggling with.

Don’t feel sorry for us. Be powerful with us. Raise awareness. Let voices be heard. Share the occasional research article or post. You never know how far one post can go or how many lives it could possibly change.

If you made it to the end of this article I didn’t know I was going to write, thanks for reading. This flare, too, shall eventually pass. They always do. Meanwhile, I’ll be resting tonight. I think I might even turn on that thing called a TV I never have time to watch. And then I’ll be back to work tomorrow, regardless.

Originally published: May 1, 2018
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