I Call Uncle

2011 January 12
by Jenny

I have fibromyalgia.

AND, I am a massively creative person.

I have ideas and possibilities and desires to try new things pretty much oozing out of all my pores at all times. I walk around in a shower of ideas for creative projects generated by the streams of creative energy that are constantly flowing through me.

In some ways, this is SO cool. I have almost no trouble entertaining myself, because I have an incredibly rich, complex, and well-developed inner world. And truth be told, I’d rather spend my time there than anywhere else.

But in other ways, this is So. Damn. Hard.

And the Particular Hard that I’m experiencing right now is the fact that I can no longer ignore the existence of my body and its current physical reality of living with chronic pain and chronic fatigue. And I can no longer deny the fact that my body, fatigued, battered, and aching, plays a role in bringing all of my various creations out into the world.

I’ve never given birth to another human being, so I don’t have that bone-deep, visceral, bodily understanding that birthing something is one of the most physical processes that we humans experience. I don’t know anything about this personally, but I imagine that it’s impossible to have a baby without going through your body.

But until, like, two hours ago I’ve spent all my time and all of my will denying that what goes on in my mind, and then getting it out into the world into some kind of physical, tangible form has to have anything to do with my body.

Because my body hurts. It hurts a lot. It hurts all the time.

It is stiff, and sore.

There aren’t many positions that feel comfortable for my body to be in.

I can’t wear most clothes that are out there, because it is excruciating when anything external puts any pressure at all on my shoulder and limbs.

Frankly, it is incredibly, horribly, AWFUL to be in my body most of the time.

But I’m in a body.

But I don’t want to be in a body, because there is just So. Much. Pain.

And I’m in a body.

And I don’t WANNA be in a body, dammit!

And I am.


Yeah, so I really don’t have anywhere else to go with this right now, because it’s pretty much taken me 38 years to stop denying the truth and admit that, no, I cannot change reality and find some way to exist in this life without a physical body.Plus the fact that my body has to do with everything about me. And everything about me has to do with my body.

I think that’s enough for today.

4 Responses leave one →
  1. 2011 January 12

    This is really, really hard. I think it’s really unfair. My experience of FM seems like it’s not as bad as yours, but I do relate to the disconnect between body and mind.

    So I guess I should be more patient with friends/family who think that if I just mentally discipline myself, I can stick to a normal daily routine. Instead, I am frustrated and hurt that they think it’s as simple as “if you had a job to go to, maybe your fatigue would go away because you had no choice but to go to work.”

    While I can see what they mean, it just doesn’t apply to my situation. I wish I could just “think myself better.” But that denies what my body is going through and as you’ve pointed out, the body can’t be ignored forever.

    Thanks for letting me be cranky with you!

  2. 2011 January 12

    Being an extreme introvert I too live in my head. I got more in touch with my body when I did yoga for about three years back when I was healthy. I definitly listened to it more than used to. Prior to yoga I basically ignored it as something annoying that I had to deal with once in a while. Now that I’m sick I can’t ignore it at all. My body dictates everything: when and what I can eat, when I can shower, when I can go shopping, when I have to sleep. It is now totally in charge and I don’t like that. I would love some control back. Even a little bit. How I would love to be able to shower every day so I don’t go around stinking like last week’s dirty socks. It also causes problems because like you I like creating things. I’ve had to stop doing this. No more sewing. No more cooking. No more gardening. No more figure skating. It blows chuncks if you ask me.

  3. 2011 January 14

    Pain sucks! That’s all I got for now~~~~
    Sending you lots of gentle vibes :)

  4. 2011 January 19

    Hi, Jenny. I wanted to contact you, but your contact form doesn’t appear to be working. Could you email me at my address above? Thanks! I promise I’m not offering you a chance to earn a million dollars from a Nigerian prince.

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