Thirteen Years

I am approaching the anniversary of my Lyme disease diagnosis. This year it will be thirteen years since that initial diagnosis. And I am struggling with it. Every year as the end of December approaches (I was diagnosed somewhere at the very end of December in 1997, I would have said it was the 28th but apparently that was a Sunday) I think about the number of years since my diagnosis, everything I have been through, etc. And I usually get really frustrated that there doesn’t seem to be a light at the end of the tunnel. After thirteen years of being DIAGNOSED shouldn’t I be BETTER? Better is relative, and I am better than I have been, but I am not “well”. And in order to function, I rely on dozens of medications and supplements as well as daily IV infusions. The medications have been part of this journey for the past thirteen years and I really can’t think of a time when there was truly a break - I mean a break from all medications, not just antibiotics and Lyme treatment. There have always been medications and supplements to take for headaches, nausea, sleep, gastroparesis, etc. And for the past five and a half years, daily IV infusions have been a part of the mix as well.

I want to be able to say I’m done with it all. I want to be able to move on with my life and not have to schedule it around medicine and food and fluids. And if it can’t happen now, if I can’t be done with it now, I want to feel like that will happen SOMETIME. There is no way of knowing if or when I will be able to get off of some of these medications, or if there will be a time when I don’t rely on IVs everyday. I don’t want to reach this time of year in 2012 - fifteen years since my diagnosis - and still be stuck where I am now. That year will be the point at which I will have been sick for half of my life. And from that point on, the time scales will be tipped.

At this point, I really don’t remember what it was like to live life without chronic illness being a huge part of it. I was fifteen when I got really sick, so yes I do have memories from before I got sick. But not really of the day-to-day life. I don’t remember what it was like to not have to think about the things that are constantly running through my head now and have been for so many years. I have alarms that go off every few hours to remind me to take various medications. I often get woken up in the middle of the night because my IV pump battery has died and I have to replace it. I worry about having enough energy to run errands on bad days and therefore push myself to do too much when I’m having a not-so-bad day. I don’t remember what it’s like to not deal with all of that.

I don’t mean to sound all depressed and glum. Things aren’t as bad as they could be. I have been so much sicker than I am now. I am able to work, I am living on my own (with help from my parents), I am in a relationship with a wonderful guy, I am able to do fun things sometimes. But I can’t help but long for a time when I am “well” and don’t have to work so hard to function at the level I’m functioning at right now. My doctor acknowledged at my last appointment that I’m able to do a lot, but I have to work extremely hard to do it and I shouldn’t have to work that hard.

When I think about thirteen years and what that looks like, it’s overwhelming. And I can’t help but feel like I won’t ever be “well”. Maybe that’s true, maybe I won’t ever be “well”, maybe this is the best it will be and I will have to work this hard to function for the rest of my life. Maybe I will be on medication and rely on IVs and be afraid of crashing or getting worse. I’m just not ready to accept that. And I don’t know if I ever will.

So for now I will push forward, I guess. I’ll get through this month and into the next one. And if that’s too much, I’ll get through this week. And if that seems like a huge mountain to climb, I’ll focus on this day, or this hour, or this minute, and just do what I can do to make it through that. And eventually maybe it will get easier again and I won’t have to work so hard. Or maybe it won’t and I’ll just get better at accepting it.

Yours,
Penguini