Sunday, February 10, 2013
Getting Old (with a disability) Sucks
So, I have this 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 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.
And I did hear from people! I still do, in fact. And, through my blog, I've gained many opportunities I wouldn't have otherwise. Freelance writing opportunities, for instance, for various niche online and in-print publications, where I got to further tell my tales of being a special needs mom to my just plain special little girl.
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. My life, Sweetie's life, our life - and how it goes on. 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.
Hubby pointed this out a few months ago, wondering if it was still even worth it to have the blog at all anymore. Seeing as I don't really talk about spina bifida that often, or raising a healthy kid while I myself have some physical limitations. It doesn't fit its original purpose. It's "just a blog." What's the point?
No worries there. The blog continues on and will for the foreseeable future. Silly Hubby! Stop the blog? No way, no how.
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 this 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.
So. Some lab results came in. My GP and I presumed that these results would show either some thyroid and/or estrogen issues for me. And when I saw the initial results myself, I thought for sure they indeed did confirm a slow functioning thyroid. This, I thought, was great news! See?! Something IS wrong with me! But. BUT! It can now be FIXED! Yee haw! So exciting.
(Funny how much more yucky you start to feel when test results -presumably- come in to back up your claims.)
But. BUT!... Well, no. The results do not show that, actually, my doctor pointed out. You're fine. Go on and live your life as you've been. Thank you, and goodbye.
Hey, now. Not so fast, mister! I wrote back to him, saying, well, that's all great and stuff. But still. These issues! These symptoms! What do I do now?!
In the end, my doctor consulted with an endocrinologist on my lab results, confirming what my doc said about them in the first place. But he does suggest I try some CoQ10 to, for starters, see if my fatigue symptoms can be helped.
Well, now. That's something! At least we're being proactive here. CoQ10 will be bought and tried. Yeah!
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.
And I've hardly ever mentioned any of these issues on this 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!
So now, I'll be having an MRI, just to confirm these diagnoses and deny anything else. I'll start some aqua therapy, get a prescription back brace, and some prescription pain relief options, just to have on hand if I want to try that route. Which, you know, I'd rather not, as taking drugs is not really my style. I'm not opposed to drugs. You can certainly tell me about that option and I may just want to give it a try. But I'll probably go a non or less drug route in the end, if I can help it.
And this doctor got that from me, right away. He could tell I'm a minimalist when it comes to taking things. He noted to me that I wasn't "on" very many things, and I said I thought I was on a lot! Thinking about it, though, most of the things I take are supplements of some sort, and not actual drugs.
He could also 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."
It's confusing. Yes, I still have the same pains as always. The same pains I've just dealt with ever since Sweetie was about 6 months old. Pain that I've never considered to be all that major, but annoying is all. But now, my pain has a name. Two names - not only arthritis, but bursitis as well. Problems that I know cause much pain and limitations in the bodies of others. Obviously, these things I've been "just dealing with" are big! So now, what? Am I supposed to feel just awful? Am I supposed to now be purposefully limited in what I can and can't do? But that's not what I'm used to! Not many people have ever told me before to chill out and slow down. Doctors, family, friends - everyone! - have always treated me as one of the gang, able to do whatever I feel I can do. And I've always felt I can do it all!
To feel like myself and go on as always without complaint, being the regular "can do" mom I've always been? Or to feel a kind of justification and vindication that, see!, I do have some major things going on with me, I can and should take care of myself, and if I think I hurt a little, to listen to my body because that amount of pain may be - probably is - enough to cripple anyone else into bed for a good many days, if not longer. Listen to my body and realize, hey, I must have a pretty high pain threshold to allow me to do all I do.
I guess that's just it. 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 what I said about feeling vindicated. Being able to say, "See? I am in pain and there is a reason why." Like what I felt initially with my self diagnosed thyroid issue - I felt excited, happy!, that something diagnosable was going on - diagnosable, and therefore, treatable! Soon, I would be feeling better. And when it came to pass that my thyroid was fine, per my doctor, I was at least happy again when he gave me something concrete to do. Take this supplement - it should help you feel better.
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 instinctively 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.
Vindicated. Validated. Listened to. That's how I feel now, in the end. Which feels pretty good. As for how I live my life? I think I'll, for the most part, chalk it all up to age. Anyone can get arthritis and bursitis as they age. And, yeah, it sucks for anyone! No real need to voice that - not for me, anyway. But I will start to do what I can to help me feel as best as I can in the body I have. I really am looking forward to feeling looser and less achy. Bring on the aqua therapy!
But will I continue to be the same me as always? The same wife and mom as always? Taking care of those I love who need taking care of, pushing my needs - just a bit - to the side in order to make sure my family is feeling its best? Yes. Living our regular, normal lives. Doing (physically) what I want, when I want, and not worrying too much about it being too much for me. That's just the way I am, just the way I always will be.
And, yeah, just maybe, I'll check in more regularly here at Sweetie & Me with some updates on how life really is for a (aging) mom with a physical disability, those challenges, and how they may or may not effect the raising of one of the greatest little girls around.