Category Archives: fibromyalgia

Chronic pain, fibromyalgia

The awkwardness of my socializing.

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My body’s absolute dislike of all fragrances makes going out into public a bit more harrowing than you might consider.

See, manufactured scents – those you find in perfumes, colognes, body washes, laundry, air fresheners, cleaning supplies, candles, and pretty much anything everywhere ever – make me sick. Sitting in a room with a single scented candle burning for just a few minutes causes my headache to creep up from mildly irritating to “Some large mammal is attempting to step on your temples just now”.

So you can imagine, this comes up a lot.

AND I HATE IT.

Because now I am THAT woman.

Oh you know her. She comes into the room and immediately asks you if you mind blowing out every lovely scented candle you set out for your fall themed party. Then she sits close to the open window for the next half hour. She also holds her breath in elevators when you wear too much perfume, and even washes her face and arms in the bathroom if you hug her and it rubs off or she rolls down every window in your UBER when you decide to liberally douse it in smelly disinfectant.

She’s INVASIVE. She pushes her needs in front of your carefully designed plans and decor and personal hygiene choices.

And I have to be her because suffering in silence isn’t an option. Prolonged exposure means days of misery for me so instead I head it off by heaping misery on you.

Or that’s how it feels to me.

I am sure most people are willingly blowing out candles or – at worst – are mildly put out when I have requests about these things but it feels like I am being the bossiest, most demanding, most obnoxious woman on Earth.

It makes it so hard to leave the house.

It’s not just preparing to socialize and mask pain around people I love, it’s having the strength and readiness to encounter threats to my physical well being all over the place and demand they be put away for my comfort.

Which is why, the older I get, the more I choose to curl up in my comfy cave and hide here forever. Like a cranky Goblin.

Chronic pain, fibromyalgia, health

Anything worth doing…

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is worth doing poorly.

Do you have a pile of clean laundry in a basket waiting to fold and put away? Is it taunting you with recriminations on just how unable you are to sit through the immensity of that chore?

Fold and put away whatever is on top, and walk away.

Are your dishes piling up because the dishwasher is full of clean dishes you don’t have the energy to put away today? Hand wash your coffee cup and set is on a hand towel to dry.

Walk away.

Can’t shower? Wet a wash cloth, add soap, wipe the stinky bits down.

Can’t bring yourself to brush your teeth? Rinse with mouthwash.

There are no actual rules to how you clean, yourself or your house, especially when you have a chronic illness. Leave things half done, only do a little, rest 187 times as you do a chore. Find the rhythm and method that work the best for you – THAT DAY – and use them.

Then forgive yourself for not being a fully able bodied person and congratulate yourself on having folded a sheet, or washed your armpits, or microwaved a bowl of soup.

The stress and guilt of the things we cannot do is just as exhausting to deal with as our disease. So don’t engage with them.

You aren’t supposed to be able to do as much as someone in good health. This doesn’t make you less than, it just makes you different. I bet there are a million small ways you make life better for the people you love, even if being there to listen when they need you takes the place of hand sewing all their Halloween costumes.

There are so many ways to show up for people, we are not limited to only those ways commonly used by the young and the healthy.

Be safe and be well.

Chronic pain, Chronic Pain, fibromyalgia

A slow but inevitable enemy…

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Having a progressive disease that destroys you in small bites is rather like being chased by Death if Death was a very small, somewhat deliberate snail.

You aren’t running from a great and final clash between yourself and your enemy but upon occasion, throughout your life, you will find it has caught up and stolen something from you.

A bit of feeling in your fingertips.

Your body’s ability to regulate temperature effectively.

That super sensitive spot above your left ear.

Each time you notice an attack you redouble your efforts to strengthen, fight back, but the damage has been done and the slow tiny inevitable snail of Death matches ever onwards after you.

Yesterday I had my first arm failure. I was carrying a box down the stairs when suddenly my arms just stopped working. The box finished its trip downstairs on it’s own and I stood mis-stairs looking at my suddenly useless arms wondering what the fuck happened.

There was no strain beforehand, no warning of imminent failure, just a tiny snail snipping a connection in my body.

Then I could move them again. I went to the landing, tried picking the box up again, and moved it to its final location.

So who knows how often this will happen going forward. I’ve been dropping things with my hands for years, they suffered the faulty wiring of this disease earliest, but the arms have heretofore been reliable.

Now, not so much.