Have you ever been worked by your job so hard that you think “I need a vacation!”? I know I have. Have you ever been worked so hard by your own failing health? You still want a vacation, only it’s impossible to escape, like a you’re a prisoner in your own body.
When my Lyme was at it’s peak, my younger sister had just died, my gall bladder was just taken out, I had just restarted intense antibiotic treatment and I didn’t have the at-home care that was needed for the hours of painful infusions.
I could barely walk, get up to use the bathroom or make food. I was feeling the lowest I had ever felt in my short 26 years of living.
Every day was a similar story. As I awoke around 10 or 11 am, I would notice each and every symptom that I had, if it was still lingering from the night before, or was brand new for the day.
I go from head to toe:
“Headache in the back of the head, eyes swollen and achey, pounding in my ears…that must be my heart palps…oh I have heart palps right now. Lump in my throat, is that acid or thrush? Chest pains, elephant sitting on my chest. Hurts more when I breathe. Fingers joints ache, they’re cold. But I’m sweating. Stomach ache- is it growling or am I about to throw up? I can’t tell. Knees hurt, feet are freezing and numb.”
I check my blood pressure and heart rate. Crawl to the bathroom. Make my way toward the kitchen for water or try to make a shake before I guzzle down most of my pills at once.
Try not to black out on my way to the couch. Then I remember:
“I have to get my weekly blood work done. How am I going to get there? I can’t drive. I guess I could Uber. That’s more money to spend. I put it off yesterday so today is infuse, nap, bloodwork.”
During those three-ish hours of infusing, I drug myself with Benadryl and Ativan to stop the allergic reactions, but since I am a POTSy, I get so uncomfortably tired for 11 am. But not relaxed enough to nap because my stomach is about to explode. So I binge watch TV because reading hurts my eyes, my vision is too blurry, and the computer makes me nauseated. I look out of the window during this time and think:
“I wish I could just take a vacation. From my body. It’s beautiful outside and I can’t emerge because the sun is too bright and will make me faint or black out.”
I call an Uber. Wait 45 minutes because it’s a Friday afternoon and everyone’s hogging my favorite phlebotomist Velda.
The familiar view of my arm after weekly safety blood work.Get stabbed with a needle. Call an Uber.
“How is it 5:30 pm already? I need to make dinner so I can take my evening meds. If I take them too late, I’ll throw up in my sleep again. But I’m about to faint. But it has to be something really healthy so I can digest this.”
20 minutes later…
“I can’t cook. Boyfriend won’t be back until 8:30 pm but that’s too late. I’ll eat gluten-free toast now and ask him to bring me a salad on his way back.”
I guzzle down 20 more pills, plug myself in to infuse and wait for my boyfriend to return. I am so tired and ready for bed but I want to stay up and say hello since he leaves before I wake up and gets back when I’m ready for bed.
“But it’s so hard to stay up. I’m so exhausted. But I have to stay up and hydrate so I don’t vomit in the middle of the night. I can’t stay up though. It’s time for bed.”
I go to my room. Take another 20 pills, some of which help me sleep.
I jerk awake. It’s 3 am. I run to bathroom and vomit. Swallow a phenegran. Jerk awake. It’s 3:45 am. I run to bathroom and vomit. Almost didn’t make it this time. Have to move to the living room so I don’t wake my boyfriend, who is getting over Lyme disease himself.
Got to wait two more hours before I can infuse a Lactated Ringer so I don’t flush out the antibiotics I infused 10 hours ago. Two dark, lonely hours go by. More vomiting, every 30 minutes. 5:45 am, I can finally re-hydrate. I plug in to the L-Ringer. Finally some relief. The sun is coming up through the giant living room window. But I can’t go back into our room or I’ll wake him up.
7:45 am. He’s up. I finally go back to sleep. That was a long ~5 hours.
I miss how it feels to not be sick.
