When Jess asked me to write something for Chronic Corner, I jumped at the chance. Because this whole motherhood combined with chronic pain thing? It sucks. Then again, if you’re reading this, my guess is I don’t need to tell you that, because you already know. Oh, and I’m Kay, usually purging my brain over at Chains of Yesterday when I can find the energy and motivation. My issues? An almost 15 year old son (typical teenager – moody and difficult and wonderful), an almost 11 year old, 65 lb boy with severe special needs (severe retardation, uncontrolled seizure disorder, feeding tube, non verbal, non mobile, completely bed and wheelchair bound – that I can no longer lift or reposition, let alone change his diapers), and a husband that tries really hard but doesn’t quite grasp the chronic pain thing. I get to deal with Fibromyalgia, Psoriatic Arthritis, a cervical herniated disc, spinal stenosis, nerve damage, Raynaud’s Syndrome, IBS and severe depression.
There’s thousands of parenting and motherhood sites and forums online – and so many of them are amazing resources. But they all leave me feeling like crap, regardless of what their intention was. I’m reading about Mommy taking Junior to the park, the zoo, on a hike, to the museum… and thinking that it’s probably a good idea for me to change out of my pajamas, being that it’s 3pm. I read about trips to the theme park, days spent exploring, crafting, doing things. And then want to cry because it’s time for me to start dinner and all I have the energy left to do is sleep. I read about the lawyer mom that works 60 hours a week, cleans the house, cooks the perfect meals, exercises, takes the kids places, and still has time left over to blog… and I wonder why it is that I can’t even manage to pull of TWO of the items on her list.
Every woman that has children goes into it with an idea of what it will be like – their version of the perfect mother that they’ll be. Our ideas may be over the top, thoughts of perfectly choreographed days filled with excitement, laughter, routine, and love. Or they may be a little more realistic, thinking that we’ll follow our children’s lead, never resenting, always available, healthy snacks ready at a moment’s notice, the modern version of June Cleaver.
So it’s no surprise that when our reality sets in, we are beyond disappointed. Not in our children, not in our spouse or partner, but in ourselves. Why is it that “every other mother” can pull this off, and we can’t? Who in their right mind would allow us to have and raise a child? Why can’t we just suck it up, deal with it, and do what it is we think we NEED to do?
Because… it’s not possible. Living with chronic pain changes everything. Whether it’s a specific disorder, frequent migraines, fibromyalgia or chronic fatigue syndrome, lupus, depression, a disability or injury, or whatever it is that causes you (and I) to beat ourselves up for not being Super-Mom, it makes us different. And so many of us just don’t talk about it – it means admitting to the world (and ourselves) that We. Can’t. Do. It. All. And that’s not acceptable to us. We already carry enough weight, enough guilt, we can’t imagine admitting it to the rest of the world, out of fear that we’ll be judged for it. The less visible your pain is, the more you worry about people thinking you’re lazy. And dammit, we KNOW we’re not lazy. We can’t stand the thought of others thinking it.
Now that I’ve bitched enough, it’s time to move on. The question we all have is what the hell do we do about it? How do we combine motherhood with chronic pain, all while making sure that our children don’t suffer because of it? How do we let go of the guilt, the feeling of not being good enough?
The answer isn’t a simple one – far from it. If it was, I’d have written a book about it and be rich now, and trust me, that’s not the case. It’s not a straightforward, if you do A, then B, then C, your result will be Super-Mom.
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It’s about learning to accept our limits, learning to listen to our bodies, focusing on what we CAN do.
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It’s about watching our children, and letting them guide us towards what it is that they really need, not what the world tells us they need.
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It’s about modifying our schedules, our routines, our expectations.
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It’s about taking full advantage of our good days, without overdoing it.
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It’s about accepting that there WILL be bad days, and improvising when there are.
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It’s about planning ahead for the days that getting out of bed seems like a major accomplishment worthy of a gold star.
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It’s about giving ourselves credit for what we do manage to accomplish.
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It’s about learning how to ask for, and accept, the help that’s available to us.
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It’s about doing everything possible to improve our situation, whether it be seeing a new doctor, trying a new medication, exercising (if possible and advisable), or whatever it is that we can do.
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It’s about NOT GIVING UP, not giving in to the guilt and shame that makes us feel even worse.
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Mostly – it’s about reaching out to others like us, sharing our ideas, what worked and what was a waste of time, and having a shoulder to cry on when we’re overwhelmed, or a venue to let off some steam. It’s about knowing that we’re not the only ones dealing with this, and that it can be done.
You’d think, by what I’ve written, that I’ve figured it all out, wouldn’t you? Not even freaking close. However, I’ve been doing this mommy/pain thing for almost 15 years now, so I do have some ideas floating around in my head. Right now, it’s about noon, and all I’ve managed to do today is run to the bank. And the only reason I did that was because my internet got disconnected (damn fibro foggy brain forgot to pay the bill) and I couldn’t transfer money into my checking account online to pay the bill. Then I came home and changed back into my pj’s (because my jeans were too uncomfortable) and sat down at the computer. Today is one of those days – my brain is going full steam ahead, but my body just can’t hack it today.
My kids have made it through 14 years and 10 years with me living with chronic pain – and while they’re far from perfect, they’re not miserable, they’re not any more damaged than most kids. Kids are amazingly resilient, and they love us – we’re their mommies. Whether we’re chasing them in the yard, or lying on the couch coloring with them, we’re still amazing in their eyes (at least until they hit their tweens, then all parents automatically suck).
And now? While my teenager mows the lawn and hubby works on the car, I’m going to take a nap. Because physically (and mentally), I’m drained. And yes, I do feel guilty – extremely. I can make all the points, give all the advice, but it doesn’t mean I’m any good at convincing myself of any of it. (I believe it about everyone else except for myself. Very hypocritical of me, I know). That’s where having a community of support comes in. Because the more people we talk to that “get it”, the less we’ll come down on ourselves for being human.
