Tag Archives: Spoonie

Chronic pain, chronicpain, COVID-19, fibromyalgia, Frivolity, health, Homemade Madness, Just me, Natural Forces are stupid, Spoonie, Trigeminal Neuralgia

Old man winter is a sadist…

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Ugh whatever is up in the Rocky Mountains right now is seriously sadistic. Nearly everyone I know is having unusual numbers of headaches and those of us who were already living life in the unusual column are clinging to the edge of the ledger by our fingertips praying to gods we don’t even believe in that a Peruvian Green Velvet Tarantula comes along and bites us.

That being said I walked today. I was able to do so because an amazing friend of mine created an amazing device for me.

See, I have some combination of facial neuralgia and parathesia that moves around my head. Some days I can wear glasses and masks and hats just fine. Others I can’t touch behind my left ear. Other days a wind across my face sends me to my knees. Lately I haven’t been able to wear anything behind my ears or touching most of my head for longer than a few minutes without my headache ramping up to GO-LIE-DOWN-NOW proportions.

As we are still amidst a global pandemic and I value my life and the lives of others this means I haven’t been able to go anywhere for very long.

Enter Scott.

Scott is a maker. He is a creator, a daydreamer, an inventor of wonderful things. He fiddles with things to make them better. He is strange and funny and wonderful and when I texted him and told him I needed his help he dropped everything to invent me this:

Why yes, that IS a neck mounted headgear-like device to hold your mask flush to your face without it touching the parts of your head that have inexplicably decided that touching is verra verra bad.

See:

So now even though my body doesn’t like wearing masks and the world is still basically a dangerous petri dish I can now go to the grocery store or for a walk with my husband and dogs without suffering for it.

What is the point of all this rambling?

There are three points actually.

Point one: I am on day three of my exercise for 15-20 minutes every day regardless of how I feel fibromyalgia treatment streak. Yay me! (Y’all are my accountability partners. Don’t you feel lucky?)

Point two: If you see an oddball creative person that thinks differently do walk past them afraid to meet their eyes. Go introduce yourself to them and try to see if your weird meshes with theirs. You never know when you will need a creative fiddler in your life.

Point three: If you are an odd duck, don’t fret. There are those of out here who celebrate and value you precisely because you don’t think like everyone else. If you feel alone now hold on. You will find other oddballs (like I did. I now have a lovely chosen family of tried and true oddballs in my life) to be your true self around but better yet, the older you get the more non-oddballs will see having oddballs in their lives make those lives fuller and more fun. So don’t give up. You are important. You are made of stardust. (Literally. Ok, I know we all are but I like to think we strange ones have just a little extra stardust than everyone else.)

Stay safe lovelies, and be kind to one another.

health, Just me

Taking it a sip at a time…

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You know sucks? Adhesions.

I have them because a rather violent attack of ovarian cysts resulted in a radical hysterectomy in my mid thirties.

I knew removing a few organs would leave some lasting scars but I didn’t know my wiggly and adventurous lower intestines would someday wind themselves around one of those scars causing me to regurgitate food more than I would like.

I thought it was a stomach flu until I spent my first night at the hospital waiting to see if they needed to whisk me into surgery. It wasn’t until that delightful 24 hours of not eating or drinking that I understood several important facts.

A. Intestines move around. Who knew? I mean, my elbow doesn’t just one day decided to wrap itself around my knee so why would I be expected to know the miles of tubing inside me were closer to snakes than pipes?

B. When you have a partial bowel obstruction eating and drinking becomes complicated.

C. The only cure for an obstruction is not eating or drinking much or surgery. (Thereby causing more adhesions for the wriggly intestines to entwine their clever selves around.)

D. I make good soup. Thank the gods.

So. I eat a diet a toddler would envy. Pudding, Jello, cottage cheese, applesauce, soup. Sometimes bread or a cracker or two. When I don’t, when I dare to dream of salad and beef or a crisp apple, I have days of discomfort until I once again provide my body with what amounts to predigested foods.

I could eat a more adult diet if I was able to chew each bite a minimum of 20 times but with atypical facial pain I am unable to manage that for more than a meal every few days.

So I am taking one sip at a time. Possibly forever.

New life goals? Soup’s on the Brain – a cookbook for those who can’t chew.

#fibromyalgia, #spoonie, #spoons, #tired, Just me, Spoons

Shortchanging…

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It seems apropos to write about short changing during a coin crisis. Of course, I am writing about a lack of emotional quarters instead of a lack of actual quarters but still, they say timing is everything.

I want to apologize to you for shortchanging you.

I short change you every time you ask how I am feeling. I never share the whole answer with you. I never let you inside that aspect of my life.

This failing of mine comes from a place of love.

You see, I can feel how much I hurt you when you learn how much I hurt. You love me and you don’t want to see me in pain. But you try to support me, you ask how I am and hope with intensity that my answer is “better.”

It rarely is.

That’s the thing about Fibromyalgia. It’s a tenacious little fucker.

I have a problem though. You see, I’ve been shortchanging you for so long that I no longer feel comfortable giving you the full story. I’ve managed to shut myself off from that luxury through my effort to protect you.

And I really, really need you right now.

I am tired.

It’s been a long road of not being okay and there are no exits for me. I am supposed to wake up every day and fight an enemy I cannot see, who is so close to me you cannot separate me from it.

I am so very tired.

I am too tired for words. Too tired to tell you how much I hurt. All of my energy is going into this fight right now. I am less able to friend, to mom, to wife.

I apologize for that.

I would ask that when you ask me how I am and I don’t really tell you, to please assume I am in a bad place and just pour on the love. I’m sorry I can’t ask in a better way, or be more verbose one on one.

I love you.