*Posted originally at Sarcastica.org

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.

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