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.

• It’s about learning to accept our limits, learning to listen to our bodies, focusing on what we CAN do.

• 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.

• It’s about modifying our schedules, our routines, our expectations.

• It’s about taking full advantage of our good days, without overdoing it.

• It’s about accepting that there WILL be bad days, and improvising when there are.

• It’s about planning ahead for the days that getting out of bed seems like a major accomplishment worthy of a gold star.

• It’s about giving ourselves credit for what we do manage to accomplish.

• It’s about learning how to ask for, and accept, the help that’s available to us.

• 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.

• It’s about NOT GIVING UP, not giving in to the guilt and shame that makes us feel even worse.

• 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.

I’ve always felt somewhat awkward when discussing my limitations with certain people in my life because those people don’t really believe I have a chronic pain disorder. I guess it’s hard to truly understand someone elses life without living it yourself, and I suppose that being in pain can easily be mistaken for laziness…even though it’s not, trust me. My mind has so much energy. It’s always go-go-go with all the things I need to do, want to do, and should do soon. My body though? Not so much. It’s a battle to even get out of bed most days, and if I didn’t have Nolan to take care of to be honest I probably would stay in bed all day.

For those of you who don’t already know, I was born with Multiple Hereditary Exostoses (MHE). There are a few wonky genes in my body that send signals to produce these bone growths on top of or around my “normal” bones. I’ve got bumps on my legs, my arms, my fingers, my rib cage – everywhere. Some of them are relatively painless, but those are generally the small ones. A lot of them are painful, extremely so. Bearable only if I follow my body’s limitations and go easy on myself. There have been times when I’ve ignored my body’s cries for rest and burnt out both emotionally and physically. There is only one treatment for MHE, and that’s surgery. You can take pain killers, but Tyenol and Advil don’t work on me personally and I avoid the heavy duty pain killers because I like having my mind clear.

I’m always in some sort of pain, most days I can ignore it. I hate damp and cold weather because it’s super hard for me to ignore the pain, the dampness and the coldness gets into my bones and joints and makes them ache so much that getting out of bed becomes difficult. Not impossible – I don’t think anything is impossible, but it sure is difficult.

Personally, I manage my pain with heat packs, hot baths, Rub A535, and most importantly…lots of rest. I find that getting lots of sleep helps me through the day. I find it harder and harder to deal with the every day aches and pains if I don’t get at least 8 hours of sleep the night before.

So, needless to say, motherhood has been…interesting for me. Don’t get me wrong, I love every minute of it. Nolan is the best gift I could have ever received and I love taking care of him and protecting him and loving him. I’ll never stop, and he’s the soul purpose for my existence now. Which is why it’s not impossible for me to carry on. I get about 3 hours of sleep in between feedings, and he’s usually up for an hour, sometimes two. So my body is struggling to get used to this new routine. New babies change your routine as it is even if you don’t have a chronic pain disorder, and the body sometimes has trouble adjusting regardless of having a disability or not.

When you have a chronic pain disorder though, the adjustments get a little harder. Not impossible, because like I said I don’t find anything to be impossible. If you want something bad enough, you can do it. I want to be the best mother I can for my son, I don’t want to hide in my bedroom because the pain is too great. I want to overcome it and play games with him when he’s older. I want to laugh and hug and teach and dance and enjoy every precious minute with him, because I know he’ll grow up way too fast. In an instant he’ll be 19 and going off to college and I’ll be watching him leave wondering where has the time gone? When did life pass us so quickly? And I at least want to have a thousand memories of always being there for him.

But things like grocery shopping take a lot out of me physically. I have to go grocery shopping with a buddy, especially since I now have to bring Nolan with me. My buddy will have to carry Nolan’s carrier, and push the cart while I walk around with my list trying to finish my shopping as quickly as I possibly can because every minute I take drains me more so. Lately, I feel like my laptop when unplugged – my laptops battery dies within 10 minutes of unplugging it from the wall. That’s how I feel when I go grocery shopping, or any kind of shopping for that matter. Perhaps I haven’t been a big fashionista because of that one reason; I hate malls. I can not spend the entire day at the mall shopping.

I don’t want to miss out on anything because of the pain. So far, I’m finding that I can do this. Sure, I definitely need a break to catch up on my sleep so I don’t burn out, but who doesn’t? New mom’s without disabilities need them too. It’s hard work, especially when you’re nursing. I try not to feel guilty about needing my sleep, because I know that I can function a thousand times better for him if I have a decent amount of sleep. I can giggle with him, talk with him and be patient when he’s fussy. But what about when he gets older and has more energy than me?

When I don’t get enough sleep, my body starts to take over my mind. I hate that. I hate not being able to ignore it, and having it dictate my day. I never want to utter the words Sorry Nolan, Mommy can’t take you for a walk today…she has to stay inside and rest. Although I’m sure, at some point anyway, that I will have to. But I really don’t want to make a habit of it. I want Nolan’s days to be full of adventures; walks in the parks, trips to the zoo and Science Centre, galavanting about at water parks – I can’t wait for it all. And I don’t want to have to sit them out. But I’m worried I might…especially if a simple thing like grocery shopping is taxing on my body.

So I’ve been worrying about it, about what happens if the pain escalates. I’m sure that he would understand when he’s older, but I know that disappointment isn’t always a reasonable feeling. We can feel disappointed even if the reason is completely understandable. It only makes sense to feel that way when our hopes or plans have changed or been broken.

And I would be disappointed too, for missing out on any adventure that I could have with my son. That’s why today, I’m hating the words chronic pain. Because it’s a life long sentence, and it’s hard to deal with when you don’t fully understand it yourself and are trying to explain it to other people.

Written by Jess.

Parenting is no easy task, but partnered with managing chronic pain, things can get harder. Sometimes, every day simple tasks can be a struggle to complete…making you feel inadequate. My hope is to diminish the feelings of inadequacy by allowing moms with chronic pain disorders to hear from other moms who have been there and know what it’s like. Sometimes, all we really need to hear is “I understand, I’ve been there. Don’t give up.”

The Chronic Corner was created to help other moms suffering from chronic pain disorders not feel so guilty for the limitations they face and not so alone in this wonderful world of parenting. There are tons of “mom blogs” out there, but rarely do you see a place where you can get advice and hear stories from other moms with chronic pain disorders!

So welcome to The Chronic Corner, and if you have your own story you’d like to share than please feel free to email me at chronicmom@hotmail.com with your story. All stories will be posted with your name, URL (if you have one) and unedited (save for spelling and grammatical errors) unless you wish to remain anonymous.

Hugs and kisses,
Jess