A Day in the Life: The Unseen Struggle of Chronic Illness

10am-2pm is my best time. And Saturday… usually. Gosh, I’m tired.

Thursdays are a hard day already. I have clients all day, and I’m in the office, which is always harder for me. This morning, I checked my blood pressure while sitting on the side of the bed. It was pretty normal: 100/72 with a heart rate of 95. My heart was beating rather quickly, considering I wasn’t doing anything, but what can you do?

Then I stood up.

I held onto the bed as things went black. Just in case things got worse, I needed to know where I wanted to land. The darkness passed quickly, only a few seconds. Then, a wave of heat rushed up to my face. As the blood pressure cuff squeezed my arm, making it numb and tingly, I noticed it had restarted the process.

I’ve learned that usually means it couldn’t get a reading the first time. So, I just stood there. When it was done, the new numbers helped me understand why I wasn’t feeling so great: 80/56 with a heart rate of 150. Yeah, not great.

I started a new medication yesterday that’s supposed to help. I told my husband, “I think it’s a little better,” but when he heard the vitals, he didn’t agree. Still not great. Yet, there were no “sparkles” in my vision, I didn’t feel like I was fainting, and my heart rate was under 199 (which I think is the highest my cuff goes). I knew it wasn’t good, I was just trying to keep hope, I think.

A Complicated Start

This day started early. Lauryn’s bus usually leaves around 6:50 AM. I heard it drive by. When Jared came back into the room and said, “Whelp,” I knew something was up. She wasn’t going to school. Her throat had been swollen for a few days, but now it seemed much worse.

We came up with a plan: I could drop her and Jared off at urgent care on my way to drop Maddy off at school, and hopefully pick them up again to take them home on my way to work.

8:05 AM: This was the time Jared set up an appointment for Lauryn at urgent care.

8:25 AM: It takes about 10 minutes to get to Maddy’s school from our house, and urgent care is very close. Maddy was on time, maybe even a little early. Then, I headed back to urgent care, hoping to pick up the other two and get to work. I told him I could wait in the parking lot until about 9:10 AM because I had a client at 9:30 AM.

8:51 AM: “Gotta go to the ER.” That was a twist I was not expecting. I had mentioned the ER at 7:00 AM, but Jared and I agreed we didn’t want to do that. Okay, off to Children’s North campus in Erie. (Technically Westminster, but it’s Erie.)

Then Jared got a call from urgent care. “They don’t have the equipment at Children’s North Campus.” Meanwhile, I’m still driving, unsure where we are going now. Either Good Sam, which is on the way to work, or Aurora, which would definitely not work with my schedule.

At a stop light, I texted work to let them know I might be a tiny bit late. (This is not recommended, for the record.) I had taken Monday off because I was worried about passing out, so I really didn’t want to take another day off.

Finally, we were headed for Good Sam, which was the direction I was going anyway. We arrived at 9:14 AM. I dropped them off, waited until I saw the automatic doors open, and headed to work.

9:26 AM: I made it to work, thinking, “this is too early to say it’s been a long day.”

Invisible Illness and Unexpected Connections

My 9:30 AM client is a delightful human. As she was telling me how often she showers and washes her hands due to her OCD, I couldn’t help but feel a little shame. “I’m glad she doesn’t know I haven’t showered since last week.”

Today is Thursday, so that’s pretty bad. Jared had to help me wash my hair. Showers are a lot for me. As the shower started to feel like dark fog was covering the tiles, I knew it was time to get out. “Your legs are purple,” was his response when I asked how he could tell I wasn’t doing so well.

That’s the thing about invisible illness—it’s not always obvious to others. He’s very attentive and can read my body language, but no one else would see this.

When I told my supervisor on Tuesday that the world turns black when I stand up, she said, “It does?! Every time?” Yup. Every time. Then, they wonder why I prefer telehealth.

At 3:25 PM, I finally worked up the motivation to go ask the admin person next door if my 3:00 client had called. The walls are so thin, it’s hard not to hear what’s going on next door. She’s fairly new, and I feel naturally drawn to her. She was so kind and said, “I hope you’re feeling better,” referring to me calling out on Monday. I felt like this was the time to share more about my medical situation.

Turns out, she has also been struggling with chronic illness. It turned into an awesome conversation for almost 20 minutes. We talked about how helpful it is to have people who “just get it” and how well-meaning loved ones can inadvertently invalidate our experiences. The bittersweet “how are you?” came up. We decided it was easier to just look at each other with a knowing, “I see you.”

These 20 minutes reminded me a lot of my coffee meetups with a friend who also has MS. It’s so recharging, while also being exhausting, to be there with her. We came up with a term, “taking a pickle day,” for when we are feeling overwhelmed, too tired, or just blah. She even gave me a cute crocheted pickle that says “emotional support pickle.” I think it might be one of those “when you know, you know” moments.

These thoughts helped me go from feeling left out and not capable to feeling recharged and understood. And that’s a lot, considering at that moment my boss was telling everyone that the practice was going to cover gym memberships. I’m here just hoping I can make it back to my car without tipping over with my tingling legs.

Wish me luck!

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Update

If you’re worried or wondering about Lauryn, she is doing great! Good Sam was able to take amazing care of her.