Bezzy MS

There’s never quite enough time in a neurology appointment to explain what it’s actually like to live with MS. But, over time, I found practical ways to organize symptoms, questions, and follow-ups when time is limited. For a long time, I walked into neurology appointments already feeling behind. I’d sit on the paper-covered table, trying to compress weeks or even months of changes into a few minutes, watching the clock before we’d really even started talking.

When it comes to chronic illness, it can be difficult to decide what to say at work, what to keep private, and how to ask for things I need without over-explaining. My answers change with my symptoms. I remember standing in the back hallway of the restaurant, staring at my shoes. They were part of the uniform: heels, dress, polished. My shift hadn’t even started, and my foot already felt unreliable, and my balance was slightly off. The subtle drag that had been easy to ignore was now harder to hide.

Higher temperatures can cause worsening MS symptoms, such as fatigue and brain fog. Healthcare professionals often refer to this worsening as Uhthoff’s phenomenon. I used to think I was just bad at summer. When the season hit, so did the fatigue, arriving without warning. My legs would become heavy and unreliable in a way that had nothing to do with how much I’d walked.

After switching to the intravenous (IV) MS medication, ocrelizumab (Ocrevus), a new subcutaneous version of the drug became available. It has significantly reduced the time I spend in the hospital for treatment. Health anxiety has been a hurdle for me for as long as I can remember. As a child, I fought shots with all my might. When MS began at 21, and foreign symptoms like weakness and pain disabled me, my diagnosis evaded doctors for 13 years.

Keeping a simple system for test results, imaging, notes, and medications makes life much easier when managing a chronic health condition. Living with a chronic illness means your life inevitably turns into a flurry of incoming documents. You know the ones — test results, MRI reports, and medication pamphlets. Follow-up instructions, new prescriptions, symptom trackers. Medical mail piles up in your foyer, like insurance claims, old bills, and more bills. Initially, it may not feel like too much.

Sometimes, my body looks fine, but my brain feels like it’s buffering. MS brain fog can feel different from day to day, and there are different tools to help you live fully without hiding symptoms. Brain fog is tricky to navigate. I’ll open my laptop and forget why. I’ll walk into a room and blank. I’ll say one word but mean another, completely convinced I said the right thing, while everyone around me looks confused. Once, I traveled across the country and arrived without my debit card.

A curb-to-gate walkthrough can help you get through an airport with the least amount of stress, and there are tips that can help you request help without feeling guilty. There was a period when I treated airports as though they were a test of character. Just check in, get through airport security — officially called the Transport Security Administration (TSA) — make it to the gate, and hop on the plane. “I can totally handle this,” I’d tell myself.

Running low on medication for a chronic health condition before a refill is ready can feel like a crisis. There are steps you can take to ensure your supply is replenished and to stay calm while you wait. The pill organizer is something many of us look at daily, but after a while, we stop really seeing it, fill it on autopilot, snap the lids shut, and slide it to the back of the counter.

The phrase “listen to your body” assumes your body is sending clear signals. Chronic illness complicates this process, making it difficult to identify the signals, but mindfulness techniques may help. Once, I pushed through a day of severe fatigue because I genuinely thought I knew my body well enough by then. I’d had MS for years, and I’d experienced worse days. This one felt manageable. I had things to do and places to be, and my internal monologue reassured me it would probably be fine.

Advocating for yourself within the medical system takes energy. Chronic illness depletes energy. When the two worlds collide, there are some lower-lift self-advocacy tips that can help. A referral had been sitting in my patient portal for 7 weeks. I knew it was there. I’d seen the notification and made a mental note. I told myself I’d manage it when I had more bandwidth, but almost 2 months later, I still hadn’t made the call.