Tuesday, May 27, 2014


Women/mothers/ladies do not complain. Ladies have responsibilities to others. Ladies do not eat/bathe/dress/rest until everyone else is fed/clean/clothed/resting. Ladies do not let a little thing like pain slow them down. Women who came before us suffered long and hard to overcome a reputation as the "weaker" sex. Any sign of weakness discredits their efforts. Everyone suffers. Everyone deals. Complaining is rude. This is how I was raised.

But today, for now, after a long, tough weekend of smiling through pain; working on household projects, visiting, entertaining (cleaning and cooking in preparation for entertaining) I am going to take a moment and I am going to complain. About pain.

Everyone has it. People just deal. If other people can do it, you can. Quit sniveling. Or maybe your threshold is just way lower than the average person? Or maybe you're weak. Or maybe you just like to whine. For attention maybe?

I have two chronic pain conditions. Chronic migraine and Fibromyalgia. I cannot always afford treatment. Right now my pre-Obamacare medical bills are so crippling that I can't afford the co-pay to visit a doctor with my current insurance, so this is one of those times. This weekend I did not suffer migraine. I did suffer Fibromyalgia pain. All weekend. And I tried, I really tried, not to be a crabby bitch and I hope for my family's sake that I succeeded.

Let me tell you about Fibromyalgia pain: It is like no other pain. It is kind of like the pain you feel in all your joints when you are wracked with fever and chills. Or that ache in your joints as you thaw out after you've been benumbed with cold. (This is perhaps why I sometimes feel cold when it is in me, even though I'm not cold at all.) But it's not in the joints. It's near the joints. But not in them, really. And unlike these pains, it doesn't feel better when you apply heat or cold or massage. It feels worse.

It is something like the pain of a bruise, but not entirely. It's more like what you think a bruise would feel like if you didn't actually have one to compare it too. I dropped a 2x4 on my food the other day and have a nice black bruise with which to perform this experiment. Both spots hurt. They hurt more when you poke them, but not quite the same.

For one, the bruise is just one spot. Fibromyalgia is in a bunch of spots. Like an ugly invisible pain rash. 

Fibromyalgia pain is something like a sunburn. Sometimes there is even a bit of skin sting, the sort that makes even putting on a shirt excruciating, but mostly it's like that under the skin sting you have when you have a bad sunburn. It's usually in a sunburn spot too. My back and and my shoulders and even my scalp (My hair hurts! It feels so heavy on my aching scalp. I want to shave it off. I wish I could go to the barber and get it cut properly but I can't afford it. Maybe I will just take the clippers the boys use and shave it right off.)

And also in my neck, but in a very different way. Like the tendons there are straining. Like my head is too heavy to hold up and move around. Like it's too much of a burden for my neck. (When I have a migraine too this is especially fun and I think how nice it would be if I could figure out how to remove the damn thing.)

But also my legs. They feel so tired. I can't carry my kicking/screaming/doesn't-want-to-go-to-bed child all the way from the firepit to the bedroom without stopping to rest three times and finally asking my husband to take over. My legs were screaming. Like the muscles were overworked, fatigued, abused. 

It's not that I'm out of shape. Well, maybe a little. But I carry this kid around all the time. Just a few weeks ago, on a good day, I spent a whole day turning sod with a shovel and barely broke a sweat. Last weekend, when it wasn't a holiday and nobody expected anything from me, we spent the weekend exploring our nearest town. Window shopping, chatting up locals. And just last Thursday my 2 year old and I went on a 2 mile hike at Kensington Metropark (and saw the herons nesting, very cool). 

It's not that I'm weak. I regularly help a 200+ pound stroke victim in and out of bed/chair/shower/etc. I regularly move furniture around, lift boxes and lumber, etc.

It's not that I'm impatient. My clients remark upon my patience. I garden. I bake bread. I parent. I train animals. You can't do those things without patience.

But this weekend, today even. All those lovely fibro days, I am impatient. Apathetic. Weak. Out of shape. Grumpy. Irritable. Depressed. Short fused. Whiney. All those things.

Those things that ladies are not.

The house is not clean. I feel as if it never will be again. The baby gets to eat cereal for breakfast and run around in nothing but a diaper (it's hot. why not). The husband eats peanut butter and jelly of his own making for lunch. The cat is out of the fence and pestering the neighbor's dog and I don't care. When my son comes home and gripes at me for letting his cat out, I will probably snap at him and say something rude doubting the necessity of the cat in our household anyway. We're out of bread. I guess I'll just tell the husband to pick some up because it's not baking itself. I don't even think I want to shower or get dressed. I'd have to corral the baby first. 

Sometimes I give him the Kindle and let him watch Youtube videos in my bed while I snuggle next to him and doze. 

For hours.

So much guilt.

Sometimes I have this fantasy, and it's martyrish so it's relatively guilt-free. In it, I don't have migraine or fibromyalgia but some sort of brain cancer and I die. And this is a GOOD THING because I have life insurance. Enough to pay off all of my medical bills and other debts (except for the mortgage and student loans, the latter would go away and the former isn't such a big deal) and with the money my husband doesn't have to pay for my medical bills, he could pay for a nanny AND put money away for retirement. I can afford to die. I just can't afford to be sick.

I have learned to prevent migraines. I wear these huge obnoxious full spectrum sunglasses that cost me almost $30 every time I leave the house during the day. They are terribly scratched up so that I can barely see out of them but I can't afford to replace them and I can't afford to let the sun hit my retinas and put me down for two days, so I still wear them. I never eat more than 5 almonds at a sitting or half a grapefruit and no kiwi at all because I know these things will trigger a migraine. Sometimes I still get them, even when I did everything right, but I still feel like I have some measure of control there.

Fibromyalgia though is a mystery to me. I can't figure out how to prevent attacks. I can't correlate them with anything else except an overwhelming sense of misery and dread. It controls my life. I squeeze what I can into good days and lay around miserable on bad days, promising myself I'll get to whatever it is on a better day. 

It has come to mirror a sort of bipolar disorder.

On a good day I go manic, with the desperation of someone who knows her time is short. I will scrub the house from top to bottom. It will reek of lavender oil and vinegar mingled with the scent of baking. The garden will be weeded. The websites will be full of new posts, updates, etc. I will even write posts that will go out in the future. Because I know that soon there will be no time for posts. No time for anything but self-pity. And I will be happy they are there. I will make huge meals and freeze them, for the same reason. I am delighted with emails, posts on forums, whatever they are. I answer them cheerfully. Even if they're critical because I know that all feedback is good feedback and I am striving to improve. Yes, I can do that for you. Is there anything else you need? I am available to you. I want to help you. I like to help you. My time is yours. If I had money, you could have that too.

On a bad day, I just lay here. Everyone eats cereal. I don't care. I am pain. I can't understand you, you're talking too fast. You want something from me, don't you? Well forget it. Just go away. You're too loud.

I hate those websites. I dread checking my emails because they will make me feel shitty. I know some ungrateful idiot is going to be asking me questions he could have answered himself just by doing a quick search of the site I worked so hard on. Or they want to complain that I got something wrong at the Witchipedia or put too much personal information on PaganMichigan. Screw them. They can edit those pages their damn selves. It's open friggin source. It was never supposed to be just me. I ask for help monthly and nobody wants to help. They just want to complain. Screw them. Screw the whole damn community. Someone wants me to give them a Pagan name, but can't be bothered to fill out the whole questionnaire: well screw them then. Nobody. not one person. Not once has ever Paypal-ed me a tip, and only one has ever emailed me back to say "thank you" so why should I bother. Obviously, nobody likes the names I send them. I suck. They suck. The whole damn Pagan world wants everyone to give them everything for free. I hurt. I am pain. I can't afford a doctor and I don't have the right medicine. I hate everyone who doesn't hurt. I hate everyone who can go to the doctor. I hate everyone and their ridiculous first world problems. I hate everyone who can think clearly enough to ask a stupid question.  Whey are they bothering me after all I give them. For free. Without ever asking anything in return. Not that they'd give anything. 

Ugh. Who is this! This isn't me!!!

This is Pain. It has made me less of a Lady. It has made me less of a person. I don't like who I am when I am Pain.

My life is rain and making hay while the sun shines. The worse the rainstorm, the more desperate the haymaking...

I am two different people. So vastly vastly different. I am pain and I am joy. I am apathy and I am generosity. I am graciousness and I am resentment. I am friendly and I am suspicious. I am the one who gets things done and the one who doesn't do shit. I am a giver. I am a hater. Sometimes I do not know me. Sometimes I do not like me. Sometimes I wonder how other people could stand to be around me, how anyone could love me. Sometimes I am sure no one does because they don't care enough when I am hurting. They don't offer to help.  (But I am not supposed to think this last bit. That is not how I was raised. And now I have guilt.)