Pill fatigue is one of the many challenges we face with NMOSD

Keeping track of — and then swallowing — so many pills each day isn't easy

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I consider my ability to swallow multiple pills at the same time both a skill and a necessity. Some days, I’ll look into the drawer of my nightstand and be overwhelmed by the number of pills prescribed to me. This realization can drag me into a moment of sadness, a sensation I refer to as pill fatigue.

As a child, my mother taught me how to jam medication into my chewed food and swallow it. Over time, I learned to take it with a sip of water, a skill not everyone finds easy. (I still notice when my 11-year-old daughter relies on liquid medication as needed.) Eventually, I learned to swallow multiple pills, which became a necessity after I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD).

My introduction to pill fatigue happened after my first major transverse myelitis attack, which involves the inflammation of part of the spinal cord. I was prescribed oral corticosteroids, which came in 5 mg pills because I’d eventually need to taper off the medication. I started at a dose of 75 mg, so the 15 tiny pills I had to take became the bane of my existence. By the time I’d tapered down to just one pill, I had spiraled into a depression prompted by the realization that this ritual would be my life moving forward.

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Finding the right mix

One of the biggest challenges of managing NMOSD is that our medications constantly change. I call it my “drug cocktail.” The reason that happens is because specialists are always trying to find the right combination of medications. As I age, the disease progresses and new treatments are introduced into the market. I’ve been on more medications in my life than I care to recall. Thinking of it only adds to pill fatigue. Just as I’m falling into a routine, my symptoms will flare, and we’ll start all over again with our search for the right drug cocktail.

Pain management is my greatest daily challenge with NMOSD. Pain is subjective, which is why it’s difficult to find practitioners willing to manage it. A blood test, for example, can’t distinguish between how much pain one patient has compared with another patient. Therefore, doctors must rely on personal accounts.

When doctors were asked to stop prescribing opioids because of the vast addiction crisis, these medications were removed from my drug cocktail. A substitute, Suboxone (buprenorphine/naloxone), a drug used to treat opioid addiction and still considered a mild opioid itself, was prescribed to me. However, it’s an oral medication that must dissolve in your mouth to work, and its bitter taste discourages long-term use. But for NMOSD patients like me who are just seeking relief, it adds to my pill fatigue.

I must quietly encourage myself when I’m debating between the torture of the terrible taste or being in pain. It seems inconceivable that we put patients through this dilemma, but such is our reality.

Rinse and repeat

I’m certain my family is tired of hearing me ask, “Did I take my pills already?” With so many pills to take several times a day, it’s easy to forget whether I’ve already taken them. When everyday life gets hectic, the last thing I remember is whether I’ve taken my medication.

I keep my pills in the same place so that I’m always standing in the same spot when I take them, all in the exact same order. I used to divide my pills into a daily pill sorter, but at the end of the week, I’d inevitably find myself asking the same question.

My best recommendation for overcoming pill fatigue is to avoid dwelling on it. This advice may seem overly simplistic, but accepting my reality and being grateful for the life I have helps to make this challenge a little easier.

Some pharmacies will sort pills for customers and put them into daily blister packs. But I’d rather accidentally miss a dose than add more garbage to our planet. As I struggle more with my memory, though, I may eventually need the blister packs.

Additionally, NMOSD patients should speak with their doctors about the quantity of daily pills they must take. Some medications come in higher doses. While the pill may be a little larger, it might help to take one instead of several.

Do you suffer from pill fatigue, too? Please share in the comments below. 

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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