A Real Day in the Life of a Lymie (Uncensored)

Posted by Nikki DiSalvo on

 
If you've read more than one of my blog posts, or if you know me personally, it's probably pretty clear to you that I don't like to complain. I don't like to throw negativity on already difficult circumstances. So sometimes I take that censoring a little too far and I think it has the unfortunate effect of smoothing out some of the humanity of the situation. There's a part of me that wants to show the really raw and painful parts of Lyme Disease, but there's another part, that usually wins out, that likes to offer people rose-colored glasses when viewing my illness. I don't want to lay my burdens at anyone else's feet, even if it's just in the very temporary form of reading my story. 

I don't like the thought of anyone pitying me. And of course, there's the part of me that doesn't want to be seen as an attention seeker. Or an incapable person (maybe especially that). If it weren't for Lyme, I never would have started a blog unless it was about something that was really impersonal. Normally I'm a relatively private person, I only really divulge my life details to a few close friends. And in conversation, I'm more likely to focus on listening to the other person than talking about myself. 
That being said, I've realized that in order for my story to make other people with Lyme feel like someone really gets it and for it to help people who don't have Lyme understand what it's like, I need to open the curtain a little bit. In previous blog posts, I've listed symptoms, disclosed some of my surgeries and treatments, and described some of the Lyme attacks I've had. But I haven't really told much about what my day to day "normal" life with Lyme is like and how it affects me. 

I hate missing things. I hate having to cancel plans or say no to events and get-togethers because I'm not feeling well. It makes me wonder how long people will keep asking me to do things before they give up and start thinking of me as an unreliable home-body with a million medical excuses. I imagine people thinking, "So you can go to school and work, but you can't manage to go out and do things that are actually fun?". I would SO much rather be out doing anything other than laying on the couch trying everything I can think of to not feel sorry for myself. I used to live for doing. I hated sitting around and always had something going on to occupy my waking hours. I don't want to be so lame!

I'm not sure whether or not people understand how my decisions are made as to what I can/can't do or what I am/am not willing to do. So yes, maybe I was able to go to work today after not being able to go to an event last night, and maybe I've turned down going out tonight too... but the reasoning is that I didn't go out last night so I would have the energy reserves to get through work today. And I can't go out tonight because working today took all the energy I had. I have to be really careful about how I allocate the resources I have, because unfortunately, I have a very limited amount.
 
Sometimes I physically can do a whole bunch of running around from place to place, socializing, and being active for a couple days in a row, but I promise I'm going to pay for it by being super drained of energy for at least a day after. I may hardly get off the couch for that day. Really. Like maybe to get something to drink and go to the bathroom. That's it. I will need my husband to get me food, my pills, anything else that requires moving more than an arm. And for some of the day maybe I won't even be able to move that arm. Or speak. I'll just have tears rolling down my face because I'm basically paralyzed and it's frustrating. If I'm lucky I won't have a full Lyme attack where all my muscles cramp up and I shake violently from head to toe. So this is why I've learned to be very cautious with how/when I expend my energy. If I'm able to keep my activities balanced with adequate rest then I probably will be able to go out and do fun things for the most part. But that's really difficult to manage when going to school and working, so it doesn't always happen.

Also, every day with Lyme is different. So some days even if I've been really good about resting, detoxing, avoiding potential symptom triggers, eating cleanly, and saving my energy up, it won't matter because I'll get hit with a debilitating headache out of nowhere and it won't go away for hours. Maybe I'll wake up with it still there the next day, or maybe I won't. No rhyme or reason. Or maybe I'll just have a really foggy brain day and not be able to focus or hold a conversation without getting confused and exhausted. Even though I tried to do all the "right" things to avoid it. That's Lyme. Unpredictable as fuck. 
 
I know it has to be confusing for people who don't have Lyme to understand how someone can be fine one day and a train wreck the next, but trust me, it's not much easier for the people living in it to understand. Expecting the unexpected is basically how I have to live in order to stay sane. Yesterday out of nowhere I had horrible back pain below my right shoulder blade, today it appears to be gone but I have deep muscle pain traveling in waves down my left arm and tingly fingers on both hands. I'm not alarmed by any of it because I know it's just the nature of the illness. It'll pass and I might get a short break before it's replaced by something else, maybe blurry vision or an icepick headache -- who knows! Lyme is like a box of chocolates, you never know what you're gonna get 😉. Like I said, I definitely don't mean to be a whiner, this is just the reality of my life and I can't apologize for it. 

So I'll use yesterday as an example. I would consider yesterday to be not a bad day. A pretty good day overall:

Wake up around 8am with the usual feeling like glass is breaking under my feet as I step out of bed. It takes about 10 minutes before I can straighten my body all the way up because my muscles and bones feel like they fuse together when I sleep (or even sit for more than a few minutes). I giggle through the groans, feeling like Sophie from Howl's Moving Castle; under an evil spell that aged me 60 years (my imagination also keeps me sane). 

In the kitchen I do my morning puttering around; washing dishes, feeding our dog Flint, cleaning up, making breakfast. Not intense stuff. But I'm having trouble catching my breath and my heart rate is up to 120bpm. It's not unusual. This happens probably 4 days out of 7, sometimes for just an hour or so, sometimes periodically throughout the day.
After being up for about an hour and a half I finally realize I haven't taken my pills for the day yet. When I go to get them out of the pill organizer, my hand decides not to work anymore and spasms, and I drop the whole box on my foot. It hurts because it's a 12x8 box, but worse than that, all 28 compartments opened up, spilling all my pills across the floor. After a painstaking half an hour of trying to reorganize 7 days of 26 pills each day, I realize that I can't remember if I took my pills for today yet. Was I getting them out or just putting the box back when I spilled it? I'm so confused. There are no pills in the Wednesday Morning compartments so I must have taken them, right? I almost convince myself that I remember taking them when I see that I've set them aside in their own pile. I don't remember doing that. I try not to get too annoyed with myself, but come on brain...get your shit together!!
 
I take care of a bunch of errands online, till about 11am. I notice the pain I had in my back since the day before is getting worse. So I figure maybe some movement will help. I take Flint outside so he can run around and we play hide-and-seek and have a good old time. I'm out there with him for about an hour. I get out the vacuum intending to clean the house a little, but my back really hurts now, my neck is a little stiff and painful, I have a headache radiating from the back of my neck, and I'm pretty tired out from playing outside so long. I lay on the couch for a little bit, reading. 

45 minutes or so later I feel like I have the energy to vacuum and clean up a little. I clean for almost an hour. House looks good, but now I've gone past tired to really fatigued. My neck/head are throbbing. I have no choice but to lay back down. I'm annoyed because there are a lot of other things I wanted to get done before I have to go to a meeting/party for work at 6, so I tell myself I'll just lay down and read for half an hour. Joke's on me, I fall asleep for an hour and a half. Totally asnooze. 
 
Sometimes I'm a sleepy sloth
I needed it, but ugh, that means I don't have time to do much now. Back feels a little better and I decide I still have time to do yoga. I do about half an hour of Yoga with Adriene and then decide I have time to take an Epsom salt bath before I shower. Halfway through my shower I get too lightheaded and have to sit down. My heart is beating a mile a minute and I'm suddenly exhausted. But my hair is full of conditioner so I lean back into the shower stream and try to rinse it out. I forego shaving because no way is that shit happening right now. I get out and lay on the bed for a few minutes trying to slow my heart down and catch my breath, feeling very shaky and seeing flashes of light all through my field of vision. This happens after probably half of my showers. 
 
I play some Otis Redding and start getting ready. We're supposed to go bowling with my coworkers after my work meeting and dinner, but with my back feeling this way I don't know if I should risk it. I take two 600mg Ibuprofen hoping to feel better once it's time for bowling. About 20 minutes later I start feeling really stumbly, my brain is working like molasses, I'm dizzy, and everything looks like it's surrounded by a light fog. Was it the Ibuprofen? I've taken it a million times before and never had a problem... I do a quick overall assessment to make sure nothing is weird enough to warrant calling an ambulance. I think I'm okay, so I just sit down and wait for my husband to get home and join me. He notices right away that I'm a little off and suggests we stay home, but by the time our ride arrives I'm feeling better.  
 
During the meeting and dinner, I feel just a little out of it still, but my back does get a bit better. I was really excited for this night full of hanging out with my coworkers and our significant others, but my body is having other thoughts. It's pretty noisy and I'm having some issues with the lighting, but I'm glad I was able to come. I have fun chatting with my work friends and eating delicious food. I decide I'd better bow out of bowling since I don't want to hurt my back or expose myself to the noise of a bowling alley considering how I'm feeling already. I'm immediately consumed with guilt since I said we would go and now I'm backing out. I'm the no fun weirdo (says my thoughts--good thing I have the choice not to believe those crazy bastards 😊).
 
Derek and I decide to head down the street to the bar where our friends are running a putting league (he was supposed to do it but found backup so he could come to my work function, what a guy). The light is less harsh in the bar and aside from the occasional loud-bassed rap song, it's quieter. I'm still a little relieved when our friends drop us off at home and I can snuggle into my PJ's and wrap up in a blanket. I had fun with our friends at putting league (I just sat in a chair and talked to people, so nothing very demanding), and I'm happy that I had such a full evening. We were gone for about three and a half hours total, but it feels like I did a lot!
 
So that's a pretty good day for me. No major issues, every symptom was pretty manageable, and I was able to accomplish quite a bit! The fact that I could play with the dog, do yoga, shower, clean the house, and go out to two different places at night is pretty damn good for me. Obviously I had the day off yesterday; on days I work and/or go to school, that's usually pretty much all I do aside from maybe make dinner. Now imagine a really bad day. Basically it's what I described before--pretty much totally couch or bed bound. Luckily, I don't have those nearly as often as I used to, and that makes me a very excited girl.

I still feel like I need to stay true to my intention with this blog, though; keeping a positive outlook despite challenging circumstances. I think it's just really important to express the ways my life is amazing. There are so many. I'm grateful every day that I have such a huge network of support, from family and friends to the disc golf community that I consider just a big extended family. We have friends here in Kansas (also part of our big old DG family) who I've gotten the chance to get closer with and I'm so glad because they are just so totally my kind of people. And they've gone completely out of their way to help us in any way we need it.  
 
I'm able to pursue my career goals by continuing in grad school and, somehow, excelling. I'm proud that I managed a 4.0 last semester despite a lot of things happening that could have derailed me. My husband constantly makes fun of me for the extremely high standards I set for myself (I'm not happy with any grade less than a 95%), but he also made a good point--without those high standards I would never able to push through in the way I have been. I started my undergrad in the same year I got sick and have been in school while working full time for every year of this illness. It has become progressively more difficult (maintaining the ability to concentrate in class and to do homework, pushing myself harder to get to all my obligations), but I'm doing it. A year and a half more and I'll be ready to just work instead of trying to balance both!
 
And of course, I have my husband Derek. I'm thankful for that guy every single day. He's incredibly dedicated to Lyme awareness (and his plethora of disc golf-related endeavors), he makes me laugh like a thousand times a day, supports me in every way possible, listens when I just need to talk (quite a feat, really), and together we navigate this crazy-ass life. I am so lucky to share my time, space, and heart with him.

So. This has been the most uncomfortable post for me to write so far. But I plan on really making an effort to keep it real, while still shining a positive light overall. Because that's how I try to live my life, and I think this blog should reflect that. 
 
 
Be Well,
Nikki