I made a thing!

A little reminder to help me get through each day.

I find myself playing with them all day long. They are just about perfect for reminding me to be gentle with myself and others as I deal with chronic pain, disability, and life.

In a plug of shameless self promotion, I am selling them. You can see them on my Amazon Handmade page if you would like a set for yourself. The come with a simply black cord.

Three Simple Spoons for Three Simple Rules. Be kind. Be patient. Be forgiving. Especially with yourself.

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From dusk ’til dawn

A peaceful day, a gloomy sky, the sounds of construction grinding by.

I light my incense, I close my door, my autumn headache is here once more.

My favorite sweater I gently don, I’ve got my coffee and my thick socks on.

I want to walk, to paint, to play. Instead I’m forced to sit and stay.

The neighbors laugh, the world moves on. I watch it pass.

From dusk ’til dawn.

The Sickroom door

It clutches you with feathered down and brings you to distress. That sinking feeling, that bone deep tired, the sickly person’s daily stress.

Your waking charge is “put on clothes” or “shower if you dare”. A far cry from the triumphs that once left your lips and pierced the air.

In place of ladder climbing feats you fight side effects and lack of rest, shattered bodies and shattered dreams disturb all attempts at nightly rest.

You get up and the make the bed each day so if you can’t do more, “At least I made the bed” you’ll say, and quietly shut the sickroom door.

From the outside you look fine, though less sparkly than before. It’s hard to laugh, to smile, to work, to play, when you live behind the sickroom door.

So you rest your head on feathered down and close your eyes once more, to spend another day locked away behind that stupid sickroom door.

— M.Morehead

Words matter…

I was feeling depressed the other day after another long bout of disfunction. Oliver and I were playing on his PS4 and I said “I’m sorry I can’t do the things other moms can do.”

To my surprise he said “Don’t say stuff like that about yourself. It makes me feel bad.”

Huh. That made me think. I didn’t want to spread my misery around to my kiddos so I really thought about the feelings I wanted to spread around.

I asked “How about if I say thank you for spending time with me doing the things I can do?”

He said “That’s better. I enjoy spending time with you.”

Our words matter. Sometimes, when we are mired in our own despair, we can forget the effect our words have on those around us. So, to all of you:

Thank you for being here to read my words.

Thank you for understanding my limitations.

Thank you for finding ways to be in my life despite those limitations.

You matter to me, your presence helps more than you know, and I love you.

This sucks…

One of the things that truly sucks about Fibromyalgia is that you are going along your life in a generally halfway decent state of activity and stout denial and then BLAMMO you can’t do anything.

Today I woke up and I was winded going downstairs. Making coffee was too hard for me to do. I tried to assemble a new catbox cover and opening one side of the box wore me out.

I spent the first 5 hours of the day lying on my bed in my pajamas listening to a book on tape because it was all I had the energy to do. Even now, writing this, my fingers are aching and my hands hurt and I am getting freaking winded from typing.

I don’t know when I will wake up again and have the energy to go to the gym or walk the dog or even bathe. Worst of all, right now, it’s even hard to breathe. My chest muscles and the nerves in my chest seem to believe that lifting my lungs up and down is a little too much for them to handle. I’m gasping sitting still and dizzy going downstairs.

Two days ago I walked 3.5 miles with the dogs happily and without getting winded. Yesterday I swam for 45 minutes and though I could feel the weakness settling into my arms I could still use them. Today I am a twisted, broken, incapable thing.

This disease sucks. A lot.

The thing that broke me…

There are a lot of things that I struggle with on a daily basis. The fact that I am able to life a relatively fulfilling life despite these challenges usually makes me feel like a fairly strong person. So when something breaks me I expect it to be something bad, really, really bad.

Imagine my surprise when what broke me this week was my ponytail.

If you have long hair I am sure you have styled it in the morning only to have your hair follicles hurt when you take it out at night. The pain is minimal and fades fairly quickly and I usually feel it is on par with hitting your funny bone, odd and painful but also a little silly.

It turns out with Fibromyalgia that is not that case. I have had my hair short for a few years since my doc told me it could be making my headaches worse and shorter hair could help – it didn’t, it just made me go through the process of growing my hair out again – so I haven’t had to deal with a ponytail for a few years. Yesterday I wore my hair in a high pony to go with a cute head wrap I had gotten to hold ice packs. I came home. I took my hair out of the pony and instead of a silly odd feeling of hair follicles relaxing I had the sensation of razors tearing through my scalp. It lasted for hours, this feeling of sharp cutting pain along my scalp. Then it subsided into the feeling of being horribly bruised. I still feel that way. Horribly bruised. 48 hours later. I can’t touch my scalp because I had the audacity to wear a pony tail.

What the actual fuck?

I looked up Fibromyalgia and hair pain online and of course it’s a common symptom, and oh joy, often comes with hair loss.

I lost it. I cried and shook and scared the crap out of my husband. Why?

Because I don’t even get my hair.

This fucking disease has taken my chosen career. It has taken my dancing in nightclubs and taking the kids to amusement parks and riding on roller coasters and working full time. It has taken my volunteering for numerous causes and my involvement in the PTA and my ability to think straight and unplanned adventures with my kids and my ball juggling and my night driving and party attending and my singing loudly to music and my sleeping well and wearing tight jeans and high heels and so many other things. It has taken and taken and taken and now? I don’t even get my hair.

I can’t have long hair and style it up in my pretty updo’s like I used to without setting myself up for days and days of intense discomfort. I don’t get to do french twists that set off my cheekbones and messy buns that are flirty and fun. I don’t get to decide how I want to look because the asshole disease that runs my life has decided to take that away from me too.

I am sure I will come to terms. I will accept this and find a way to cope but right now I only have one thing to say.

Fuck you Fibromyalgia.

Fuck you.

6 days and 75% backed…

I never believed I would get this far and now I am nibbling my nails and hanging on tenterhooks because I only have 6 days to get my remaining backers or the project fails!

It’s so much stress and anticipation. I had hoped that offering this Kickstarter would bring my art into the broader world, and it has, but it’s much more difficult to be mellow about failing when I am this close to success! I am not sure I would do this again.

If you want to peek at it you can visit bit.ly/make100paintings

Here’s one of my new fishies: img_20190214_165222

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