There's "Something" About Us

So, over on the other side of the blogospere, I have this other little blog. It's called Sweetie & Me and it's all about, well, Sweetie & me. I started it, jeez, almost 8 years ago, mostly as a place to discuss my being a disabled mom (I have spina bifida) raising my healthy and active daughter. You see, there are very few - I mean really very few - resources out there for women with spina bifida wanting to have a normal pregnancy and child raising experience. At least that was the case back then. Unfortunately, that still seems to be pretty much true. I just wanted to be that one voice in the crowd that people could quietly hear and listen to, question and feel connected to, if they wished. So I started the blog and began to write.

But somewhere along the way - and not altogether that long after starting the blog, even - I just started writing about, you know, "stuff." Mom stuff, kid stuff, funny, poignant, infuriating, normal stuff. Which, of course, is all "normal" when it comes to being a parent. So, in essence, my blog pretty much became a parenting blog, - or, really, a Sweetie blog - more so than a disabled mom/healthy kid blog. Because, in my world - in my family's world - it's all normal. It's our normal. Things weren't happening or not because of my disability. Life was happening, all the time, no matter what my body could or could not easily do. It's just - life.

And so, these nearly 8 years later, I'm still checking in - though, granted, not as regularly as I'd like - to write about life. I'm still loving the writing and happy to have a place to share. But, no, I can't really claim that it continues to fit my original purpose for creating the blog in the first place.

Now, cut to Jan. 1st, 2013. A date I decided was going to be the start of "my year." I have been taking care of Sweetie and Hubby all these years, while quietly dealing with, downplaying and/or outright denying any physical issues I'd been experiencing over the years. Yeah, I hurt. Sure, I'm tired a lot. No, that's not the end of my "issues" list, if you want to know the truth. But it's nothing. No complaints here. Keep calm and carry on.

So - 2013. My year! This meaning lots of doctors appointments on my schedule. I've seen my GP, my neurologist, a dermatologist, the eye doctor and a physiatrist. I've had tests done, and have more on the schedule. I am getting all checked out! Time to admit I'm not feeling my absolute greatest and figure out what's going on and how to make it all better. Time to admit life isn't as "normal" as it once was for me. Things are harder to do. Things do hurt. Things just don't feel right.

Time to look at my other blog and see how little I've written about how I'm actually feeling and moving - topics that would fit oh so well into the original purpose of the blog - compared to how much I continue to write about Sweetie and all her "normal" shenanigans. Sweetie's funny and smart and great and interesting! Who cares about the comparatively minor inconveniences of my sore and tired slowing down body? No one! Not relevant!

Well, yes. Relevant. Completely. Duh.

And then there's the physiatrist appointment I just had. A physiatrist! I had never in my whole entire life heard of such a doctor, but now wonder why I have not had a physiatrist my whole entire life. A doctor who treats disability and pain resulting from injury or disease, especially related to spinal cord issues?! Dude! Where has this been all my life?!

The doctor himself I thought was, um, strange. Spastic, nervous, mild mannered. Odd. But also completely intelligent and intuitive - the guy knows his stuff, even if he's not very good at expressing it.

So what has he determined are my issues, causing my constant low back pain and a left thigh that goes numb after standing or walking on it for 5 minutes or so? Well, that would be bursitis in my hips, and arthritis in my back - more specifically, spinal stenosis.

Awesome.

And I've hardly ever mentioned any of these issues on my other blog. In passing, maybe, sure. But nothing that anyone would remember, I bet.

Not so good for a blog that's supposed to discuss my challenges as a disabled mom!

Obviously, I'm not a complainer. Or else I'd be writing about my issues all the time. But no one wants to hear that!

Leave it to this intuitive, strange doctor to tell, right away, that I'm not a complainer. How true, how true. I found myself telling him about the rest of my family, including how my daughter doesn't complain at all. I also had to admitted to hating this - it's not always a good thing to have a kid who doesn't complain, you know.

"She gets it from you," he said.

"Bu..." But she has something to really complain about!, I just about nearly said out loud.

Sweetie has Lyme, I wanted to say. She totally could complain. But she doesn't. But that's, probably, you know, because by all rights, she actually feels pretty good on most days. Huh. I guess she's okay.

Just think of that! I was all ready to say how much my daughter has every right in the world to complain a lot - a child who, yes, has Lyme, but really seems to have it pretty much under control for the most part. As opposed to me, who I feel comparatively has no right to complain... yet I have real aches and pains and fatigue and other assorted issues every single day.

I didn't tell him any of this. But, obviously, I've been thinking on this craziness ever since.

The reality of my falling a lot also came up with the physiatrist, as well. I, as always, tried to brush it off, laughing that I fall so much, I'm a professional. I fall so much, I know how to do it as safely as possible. "Yeah, but falling's not good!" he pointed out. Along with falls in general just not being good for me, he pointed out that I'm getting older too, so age, factored in to what I've already got going on, really makes the effects of falls challenging for me. I admitted, well, yes, I have found that it's harder for me to recover from falls these days. I can feel the soreness, for instance, the next day after a good fall, when before I could just get up, brush myself off, and forget all about it.

Could it be that simple acts like merely walking around are major accomplishments - or challenges - for me? Am I way worse off then I've ever believed myself to be? Sure, getting real answers to my aches and pains is, in one way, helpful, because now I can work on fixing them. But at the same time, I kind of now feel like I should have been doing things differently my whole life so that I wouldn't have wound up like this by now. I'm having a real conflict with the idea I've grown up with of, "well, nobody ever said I couldn't, so I'm at least going to try - I can do anything I set my mind to," and what I feel I need to consider now, being "you've really got some things going on with yourself, so maybe you need to think and take care more to live a more protected life."

I don't want to complain. There's no point in it, it doesn't change anything, and it just annoys anyone listening to it. Complaining isn't my style. But there is something to getting that sort of vindication. Being able to say, "See? I am in pain and there is a reason why."

But there's also something about now being made to feel like I'm "sick" or diagnostically limited in ways I wasn't just a mere few days ago. Before, I carried on through my pain. Now, I know what's causing the pain - what's physically happening in my body to create the pain - and I feel the need to take better care of myself. Which, you know, isn't such a bad thing. It's just - being more aware of my body and why it's feeling the way it is, and trying to take care that I don't do anything to make it too much worse too soon.

And then I think, again, of Sweetie. She, being the non-complainer that she is - like me. She, yelling an annoyed "I'm fine!" when I see her bump her head and instinctively ask, "Ooh! Are you okay?!" She, doing the same when she falls down a few of Grammy and Grampy's (carpeted) stairs. No matter what, always answering with an annoyed "I'm fine!" and an underscored tone of "Jeez! Leave me the heck alone!"

Wow. I think I get it.

Just like I am now feeling this low lying (and mostly self-inflicted) baseline of "something's wrong now. something needs to be more careful now. I am not who I was before, even if I feel like I am." Sweetie must feel the same. No matter how she's been actually feeling, as a general rule, over the past 2 years or so, ever since she's gotten a diagnosis of Lyme Disease, "something" has changed. About how she sees herself. About how others see her. And its no fun. Why can't things just be like they were before.

Vindicated. Validated. Listened to. That's how I feel now, in the end, for myself. Which feels pretty good - for me. But, yeah. I get it now for Sweetie. She just wants to be regular. Just wants to go back to normal. Just wants to be treated like a regular kid. Not always being asked how she's feeling. In fact, she's developed such an aversion to that, that she's developed a strong dislike to being asked how she is when any change occurs - health or bodily harm included. "I'm fine! (just leave me alone!)"

Yep. Message gotten. But still. Sorry, Sweetie. You are going to have to accept the fact that people care about you. Accept it when people are concerned for you and only want to make sure that you are feeling well and/or haven't hurt yourself while participating in any regular, "normal" Sweetie-style activity. Go! Be you! Have fun! Do every regular kid thing you set your heart on, because you are and you can.

Just be careful and accept a helping hand, a concerned person, a loving heart when offered.

You are loved, Little Girl. And we will never stop caring about how you are - Lyme Disease or not. We just want to make sure you stay as healthy and injury free as possible as you go about your regular days.

And, yeah. Maybe I'll start writing more about me over at Sweetie & Me to also show the world how I manage and get through my regular life with a few more added physical challenges than before.