Category Archives: fibromyalgia

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.

#fibro, #fibromyalgia, #fibrowarrior, #spoonie, #spoonielife, #spoons, #topomax, #topomaxsucks, #writer, Chronic pain, fibromyalgia, health, Spoonie, Spoons

Too hungry to sleep…

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yet too full to eat. Last night was a special kind of party. I lay awake with a rumbling belly, thinking about all the food I have enjoyed eating over the years in great detail, while I tried desperately to keep down the 1/2 cup of meat and veggies I managed to eat at dinner.

It was an experience I am not looking forward to repeating. In fact, right now I’m writing here instead of sipping at the disgusting copper-flavored vanilla protein shake I am too full to drink despite having eating nothing since 7 pm last night.

On the upside I have now lost 11 pounds since this all started. Only a month left to go. I have the excess weight to lose and if I can use this miserable experience as a jumping off point for exercise then I can actually start running again and maybe keep it off.

My amazing neuro told me that Fibromyalgia is a syndrome that attacks and destroys the small nerve fibers in the body, hence the pain, itching, tingling, etc. However, the good news is that exercise and motion of any kind creates new small nerve fibers, so movement literally floods our bodies with new soldiers for the fight, which is why it’s important to keep moving. I was doing a really good job with Couch to 5K but the combination of gaining muscle weight and then Lyrica weight made the running too hard on my knees so I had to stop, but I miss it. I would like to do it again and I know my puppy would like to join me. So, maybe this month will be a good place to jump start running.

See, silver lining. Not all bad. Gonna take a disgusting sip of chalky copper vanilla shake now.

Yuck.

I would just slam it to avoid the flavor but I did that yesterday and spent an hour trying not to throw it up. So, the good news about rebuilding those nerve fibers is that it’s not exercise per se that does it, it’s movement. One of the ways I make sure I move some every day, even on the worst days, is I make my arms and feet dance every time there is music played during a movie or TV show.

I also routinely perform wrist rolls, ankle rolls, and neck stretches as I rest. While there are a ton of exercises and programs out there, Yoga, VR boxing, dancing, etc., my doc was clear, movement is the key to helping out our bodies so that is what I focus on. Sometimes my only movement in a day is doing my laundry or vacuuming my floor because that’s all I can do, and that’s ok.

Stay safe loves, I’m going to try and finish this shake and maybe, just maybe, get all the stuffy fluff my puppy has strewn about the room into a trash can so I can pretend, for a hot second, that I live in a clean house.