Monday, January 04, 2016

Push Me Around, Why Doncha!

We took Sweetie to - finally! - see The Science Behind Pixar exhibit at the Boston Museum of Science this past Saturday. This made me so happy, because it's something Sweetie's been wanting to see since the Spring, when she was one of a handful (or so) of kids who actually got to preview a few parts of the exhibit and offer her opinion on what she liked and didn't like about it - all in the name of making the exhibit excellent for all to see when it finally was ready to open to the public. She loved it, we loved it, and it was especially fun to share the experience with my cousin and her family, who happened to be planning a trip to the exhibit on the same day. It was a fun day all around!

But... the experience also made me sad because, well, it was just hard for me to do. Physically. To walk around. Without pain. Without numbness in my legs. Without sitting down every chance I got (which, if I was lucky, was every 5 minutes or so or, if I wasn't so lucky, every 20 minutes or more.) In fact - I wasn't able to get through the day - or even the first 15 - 20 minutes of our visit - without the pain and numbness settling in and not giving up. Finding a place to sit down for a bit always helps. It helps a good deal, actually. But the back pain was there, at some level or another, to stay, and the leg numbness returned within moments after getting up from every little rest I could find.

I could blame this all on the fact that I forgot to bring with me my (store bought by my own decision) back brace. But... hmmmm.... the last time I knew we'd be going on a bit of a walk (a tour of a local school Sweetie is interested in transferring to) and I did wear my back brace.... well, my legs got more numb and my back was in more pain than I can ever remember them being. I was forced to sit down and miss the second half (or more) of the tour because I simply wasn't physically able to do it. So, no. I don't think having my back brace would have done much, if anything, beneficial to me at the museum.

You know what? It's not how difficult it was for me to get around, or the pain or numbness that made me sad. No - I was expecting that. It's what my life is like now. Seeing the exhibit, being with family, seeing the excitement in Sweetie's eyes at everything - in the Pixar exhibit and beyond in the rest of the museum we visited afterwards - completely makes it all worthwhile to me. I can do it! My family allows me to sit and rest as much as I need, without complaint, each and every time. They are used to the limitations I have and what I need to do to help myself out, and they honor each and every request for "a few minutes rest" whenever the situation arises.

What really made me sad - makes me sad - is the realization I've now been forced to accept that I cannot do this anymore. I cannot go out on big walking adventures anymore. I. just. can't.

It's time. It's time I admit to myself that, when we go places that will require a large amount of walking, I must rent a wheelchair. This will make the experience more enjoyable for everyone. There will be no issues with how long I can "last" as long as my companions are willing and able to help get me from place to place. Sure, they'll have me to push around, but Hubby and Sweetie are strong and able. I'm sure it'll be no problem at all - even fun! - for them to wheel me around anywhere we care to go, for as long as we all want to be there.

And it's not like I've never ridden in a wheelchair before! Why, when I was 16 and way more energetic and had a lot more "ability" with my disability, I visited Disney World with my mom and aunt and they wheeled me all around the Magic Kingdom and the other Disney parks. And when Hubby and I visited Paris when we were first dating, we were able to get me a wheelchair for our tour around the Louvre Museum. I wasn't riddled with back pain or numbness in those days. But I had just walked a ton on our Paris adventure, so getting to sit awhile while we visiting the museum was a treat for my tired bones.

But still - it's a sad realization for me to have to admit that this is it. I really can't just choose anymore to get a wheelchair or not just because it will make things a little easier maybe... No, now I absolutely must get a chair if I want to have any stamina left at the end of the day, and not want to feel like I'm complaining or making Hubby, Sweetie, or whomever else I'm with feel like they have to shorten their experience just because I'm completely done walking around.

But still - it feels like admitting this is just the first(??) step in heading downhill in my abilities as I get older (stairs are getting harder and harder for me too - at least on the up trip.) I don't want to get worse! I don't want to have to be in a wheelchair all the time! I don't want to become a burden to Hubby, Sweetie or anyone else!

Maybe you can even argue that I could work really hard and help myself enough with exercise, therapy, chiropractic, acupuncture, etc., etc., etc... now to get me back to good enough and not needing a wheelchair when we're out and about. And maybe that's right. But only right enough. I've had this back pain and leg numbness (which is becoming worse as of late) long enough and with enough therapies, exercises, etc., etc., to know that all of what could be helping me only helps me a very minimal amount. Chiropractic perhaps is the best and I should look into getting back to that. But... take acupuncture, which is my latest attempt at relief. I had an acute back side pain that treatments helped with immensely! But treatments (and, yes, I've only had 4) have not done a lick of good for my general, Spina Bifida related pains and numbness. And, if you think about it, how could they? My body is just not set up the way it "should" be to have proper flow and connections. So acupuncture really could only get me so far, if at all, through any chronic issues I have. But chiropractic has helped me before - greatly! - and can work, over time, to physically move my body back into a more fluid order where synapses can begin to connect and pain and numbness can ease away. Yes, if anything, I suppose I'd go back to chiropractic.

But still - that would not be a cure-all. A great help, sure! But not a cure. I know it would still feel like the best option - to rent that wheelchair when out on lengthy adventures so that whatever chiropractic has helped to restore is not thrown out the window when my body walks and walks and walks, getting more and more tired, sloppy, and back to disrepair.

Okay. So this is not a sad thing. It's a helpful thing! We can be out for longer stretches of time! We can do more! I can still get out of the wheelchair when I want or when that makes looking at something on our adventure easier. It's not like I'd be stuck in it. But it would be helpful. And I know Sweetie and Hubby would actually make it fun, for them to push me around and "drive" me all over the place. It could be a real hoot, if I think about it. I mean, come on! Do you know Sweetie and Hubby?! They'd be a riot! We'd all be laughing and racing and having a grand old time, I'm sure.

So. There it is. A major, permanent change in how I live my life. I simply won't be able to do some adventures, since it's pretty hard to maneuver a wheelchair through the woods on geocaching hikes. But there will be so much more I now can do, because I'm not tiring out my body and I'm granting myself permission to take care of myself like I should.

Hubby is always telling me not to be a martyr. That I don't ask for help nearly as much as I should. He, more than anyone else, knows what I am capable of, and what I am not. He allows me to push myself further than anyone else does, because he knows I can do it! So.... that's another thing. Not wanting to disappoint him that this is now a thing that I cannot do.... But, no. Again, he tells me not to be a martyr. To ask for help! Well, I'm saying now, with this aspect of my life, I need the help.

Not sad. Glad. Glad I'm finding a way to still do (most) of the things I want to do with my family, while also doing what's right for me and my health.


Anonymous said...

Amy, you are one strong woman. I really love your outlook on life. Your daughter is a joy, and that Hubble is just your other half. Thank you for sharing. Your UU friend in FL , Barbara T.

Anonymous said...

Amy, you are an inspiration. I enjoy reading your posts. Your family is lucky to have you.

Janet said...

I too l'm a mom with limited mobility. I was happy to read your blog. I feel less alone. Thank goodness there are other moms like me.