Tag Archives: chronicillness

Just me

Heavy Lifting…

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I’m going to start this by saying I am in no way suicidal and I am in the care of a very good therapist.

Okay, now that’s out of the way; I’m really fucking tired.

Do you have any idea how heavy a lift it is to get up every single morning of your life feeling like you fell down the stairs and still just get on with living?

I never wake up rested and spry, I never open my eyes and feel good, I never greet the day with fresh excitement.

Every single day is a struggle to overcome the very real, very intense physical weight of the pain my body has decided is my constant companion.

I’m really tired of it.

I’m tired of opening my eyes and feeling the pain flood in.

I’m tired of becoming aware of the pain in my head, neck, fingers, toes, back, hips, legs, arms, etc.

I’m tired of getting up anyway.

It’s such a heavy lift, this pain of mine. Finding joy, cheer, motivation when it’s pressing down on me all the time is a full time constant choice. Not despairing when I am never allowed a moment’s respite is hard fucking work.

I don’t want to give up on life but goddamn some times I want to give in. Fall apart, crumble, collapse, stay in bed for weeks, months, years. Not get dressed, not eat, not shower or plunge or write or paint or walk the dog. Because making the choice to do all those things with the pain along for the ride is really, really hard.

I’ve been doing it for so long and I’m only 50.

I have so much farther to go.

Thank you for listening. I’m really feeling it tonight.

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

Folding in on myself…

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I feel as though I am folding in on myself, choosing myself for company and comfort more and more.

I do have my family and spouse and ever since my friend moved in with us I have felt little to no need to leave the house for companionship.

She, like me, lives in a body with designs on a difficult existence and I find the comfort of sharing life with someone who really gets it so fulfilling I fear my inner goblin has begun to take me over.

It’s just hard, you see.

Hard to live each day in a body that simply never lets you forget that you are supremely fucked.

I never feel good. I haven’t felt good in over 13 years.

I feel less bad sometimes.

I have amazing experiences that push the less bad into the background sometimes.

I’m really good at giving the appearance of doing pretty damn ok.

But I hurt. Somewhere. A lot. All the time.

I’m even improving and getting off medications and having wins and I’m still hurting all the time. Just, less.

SO yeah. It’s really hard to carry all that around all the time and then go somewhere with people who love you and NOT just dump it on them every single time you see them.

So I don’t. I talk about ANYTHING else.

Then I feel like I am not talking about the thing that most impacts my life and that nobody really knows me anymore.

Then I feel like who could really want to know me when what I have to talk about is just hurting all the time?

So I fold in on myself. I choose my own company.

I choose my own comfort.