Tag Archives: chronicillness

Chronic pain, fibromyalgia, health

Anything worth doing…

Leave a comment

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…

Leave a comment

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.

Chronic pain, chronicillness

The inevitable slide…

Leave a comment

One thing people don’t really talk about is the slow inevitable slide of progressive illness. I’ve been sick for about 16 years now, disabled for 5, and for most of that time people in my life keep asking me if I feel better.

I will never feel better.

At each stage of my particular disease I have felt the best I will ever feel again because I have a progressive disease that is killing me very, very slowly.

It’s like being murdered by a tiny snail, or stalked by death in the form of a tortoise. You’ve got a long, long time to contemplate your end, but you feel every single step of your demise.

This year has been a slide. I’ve been sicker than usual more often than not. Less able to do, more susceptible to the usual colds milling around, more exhausted after activity. Even as I have increased my exercise, improved my diet, dialed in my medications, I am feeling the slip.

Today I am on day 8 of a respiratory illness that has had me in bed unable to do much of anything all week. I know I will recover from this cold and get back to life but I also know I will be slower, weaker. It will take me a lot longer to get my breath back, to get back to the 30 minute 3 mile walks with my dog 5 times a week. To get back to lifting and gardening and hula hooping. To get back to anything really.

And it all feels so daunting. The clawing back to the surface from deep inside this hole. Especially knowing how easily another cold can come along and knock me down. Making the process start all over again.

If you are a healthy, mobile person do me a favor please. Pause and take a moment to truly revel in all the amazing things your body can do.