Balancing Act

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Disability and Determination is a weekly newsletter about my experience navigating life with a rare disability. If you like this post, feel free to give a click on the ❤️ symbol below. This will help me get discovered by others on Substack. To be notified of future posts, drop your email in the field at the bottom and click the Subscribe button. If you’d like to further contribute, I also offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕ I’m glad you’re here ☺️

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[Image Description: On a multi colored wooden table, a gold weighing machine sits. The weighing tables are small and round and the left one sits slightly higher than the right one. On the wooden base are three gold stars.] Image Credit: Photo by Elena Mozhvilo on Unsplash

Last week, I had my most recent fall. It was naturally not on the 95% of our house that’s carpeted, it was on the wood floor, and my parents had just left for a trip so I was on my own. The level of scariness that comes with falling now is something I can’t even fully put into words. When my foot got stuck on the ground and I could feel myself going toward the floor, it felt like slow motion. I’m pretty sure I yelled. I fell on my knees which thank god, sustained me once again. Breaking a bone when my parents weren’t there was not something I was prepared to deal with. I was able to get myself up by scooting over to the stairs and pushing myself up so I didn’t have to get back on my knees to get up like I usually do.

I had all of these plans of things I wanted to do when my parents weren’t here. One of the ways I show that I love people is with acts of service so I like to clean the house as much as I can so it’s all done when they come home. I used to do the same thing when my roommate I lived with for a long time would go on a trip. That just wasn’t in the cards after my fall. I had to force myself to rest and take it easy so I didn’t end up falling again.

I’ve never been good at “taking it easy”. I excel at sleep but sitting around doing nothing for an extended period of time is rough for me. I get antsy or bored. Falling forced me to take a step back and look at that. I had to decide what I really needed to do and what I wanted to do because I needed to feel “productive”. When my parents aren’t around, I have to do a lot of the things they normally help me with by myself so it’s a lot more tiring physically. I wasn’t able to do that this time though. I had to prioritize.

As I’ve mentioned before, I’m also not good at asking for help. I will often push through when I shouldn’t because I want to be able to do something and not have to ask for help. This time though, I let our neighbor help me. He took the trash cans in and out for me and he got the mail the whole time my parents were gone. Those may sound like simple things but the amount of physical energy (aka “spoons”) that saved me, was a huge help. My friend that lives nearby also offered to come and help with whatever I needed so I knew she was just a phone call away.

Ultimately, I got the rest I needed and I didn’t overdo it as I so often would have in the past. By the end of their trip, I was still in pain, but I was able to get some of things I wanted to done around the house before they got back. I didn’t get everything done, but I was ok with that. I knew that I had done what I needed to take care of me which was the most important thing, and which they would agree was the most important thing.

I’ve been in way more pain lately in general, and that’s been hard to deal with. It’s a side effect from the osteoporosis injections. I thought maybe the day after the shot I would have pain and that would be it, but it’s been an ongoing thing since last month. The shots can cause issues with your vital organs like your kidneys and pancreas too so I’m always on high alert making sure that the pain I’m having doesn’t seem to be related to either of those. Something like a shower or standing for even a few minutes often leads to really bad pain in my legs. I had been doing so well with my physical maintenance, going to physical therapy once a week and then doing my CUBII elliptical everyday. Since my physical therapist left, my appointments have decreased and they’re trying to get me to do more home exercises which don’t really work for me for the most part because I have nowhere to do them, or I end up hurting myself when I try. Doing my CUBII can be ok some days and others it makes my legs hurt even worse. After my fall, I couldn’t risk weakening my legs at all either and potentially falling again.

The mental toll this takes is immeasurable. I try to do what I’m supposed to do, but every time I start to build momentum, something comes along and sets me back again. When my cholesterol levels came back high a couple of years ago, I worked really hard to get them back down again with my diet. Now I’ve all but given up on eating well. It feels like one more thing I have to try manage that I don’t have the energy for. But I know by not trying, I’m gaining more weight which then makes getting around even harder.

It’s a constant balancing act and it’s an act that’s forever changing when you’re living with a disability. I have to keep revaluating what I can and can’t do—what I do and don’t have the energy for. What could cause me more pain. It’s tiring. I’ve been getting out of the house even less than before because I just don’t feel good most of the time. I haven’t been able to go into the office at work. All this even when I hadn’t fallen yet. I appreciate that I’ve gotten much better at not pushing myself and allowing myself to rest when I need it, but the isolation I’ve been feeling has been real intense. I started seeing a therapist again so I’m hopeful that’ll help me sort some of this out.

If you’re exhausted from the balancing act and not feeling good too…you’re not alone.

❤️☮️