It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.
It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.
It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.
That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.
Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.
And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.
And it’s missing the days when a massage was just a massage instead of a medical treatment.
And it’s acknowledging it here on your blog and then letting it go.
Much love to my spoonietribe. Keep on keeping on.
a kiss, a touch, a graze, the wind
sets fire raging across my skin.
not the fire of passion’s grace
but the fire of a ravaged face.
nerves read fingers and knives alike
and interpret love with increasing spikes
of headaches, throbbing, and sharp rebukes
a razor’s dance of bio nukes.
The act of love becomes a maze
paths drawn anew with the latest phase.
he never knows which nerves will measure
the touch of pain or the touch of pleasure.
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.