Until recently, I hadn’t really ever framed my kidney disease like this. Not that I’ve been in denial about it or anything, but it wasn’t until strangely I had a dream where it came up that it kind of clicked in my head that I’m different now, and I deserve to be treated differently.
Not better, mind you, but in ways that other people who don’t walk around with chronic diseases ever think about through no fault of their own.
In my dream, I was back working at the auto parts warehouse where I worked as a teenager and my boss gave me a little shove as he said hello. Nothing mean about it, per se, but in this case I fell down and told him, “I’m disabled – you can’t do that anymore!”
Although falling isn’t something that I normally worry about, I’m technically supposed to be wary of it because if I were to fall on my ginormous kidneys, it could cause some of the cysts on them to break, which leads to infections and all sorts of other bad stuff.
That said, when I think about being disabled now, it’s about establishing new boundaries and expectations for how I interact with the rest of the world and how it does so with me. I know that spending an entire day in the heat walking around a theme park isn’t in the cards for me right now, nor is swimming because the risk of infection through my catheter site is too great.
Where I could stand to improve on is defining these struggles that I’m having for other people to help them better understand what I’m going through and what I may or may not be able to do in my current health. Lately I’ve been fatigued a lot throughout the day, to the point where sometimes I’ll sleep for 12+ hours if I can, yet I’ll still be tired afterwards. I’ve also been dealing with a lot of intermittent nausea – mostly in the mornings – but it’s enough to suck the energy right out of you because let’s be honest, who wants to do anything after they’ve just thrown up or feel like they’re on the verge of doing so?!
My world is definitely changing – I can’t work odd hours or 50+ hour shifts anymore to push through on a project because the rest of my schedule just collapses if I don’t give my health the time that it deserves. When I first started dialysis, at least I got two “skip days” a week when I didn’t have to do it, which I would try to plan for early meetings at work or field trips on Fridays with the kids, but we just changed my prescription to get more aggressive with my treatments and those skip days are no more because now I’m doing dialysis seven days a week.
I need to figure out how to best communicate these new limitations to the people who need to hear them because I don’t want somebody thinking that I’m just being lazy by declining 8:00am meetings while I’m still finishing dialysis or that I’m using the sick excuse a lot when the fact of the matter is, well, I am!
I am disabled, and it’s not like a cold where everything will just get better in a week or two with some antibiotics. Even when I get a transplant, it won’t be entirely behind me because I’ll have to take anti-rejection drugs for the rest of my life (or the life of my new kidney). Big or small, the symptoms will always be a part of my daily life to deal with from now on.
It’s really just about empathy and understanding that some people have struggles that will follow them for life. And life is a lot easier for us when people take the time to understand those struggles and not just attempt to guess your story through their own limited world view.