This Can't Be Happening to Me

Recently, I was experiencing some tingling in my foot. I am trying to do a better job of noticing when my body is communicating with me. I am 26, and this is something that is new for me — actually stopping and thinking to myself, "Wait, is this normal?"

If you have narcolepsy or any other condition, you probably have asked yourself this same question. Shoot, that's more than likely how you got your diagnosis, whether you saw a video on the internet or your loved ones overheard a conversation and then brought it to your attention. There are many ways someone encounters that same question in response to their health.

Crushing news of a new diagnosis

Back to the story — the tingling in my foot. A couple of weeks went by, and I finally had a conversation with my primary care provider. I had a sneaking suspicion that the tingling had something to do with diabetes. After my A1C was checked, the results came back; turns out, my suspicion was right. I was pre-diabetic.

Crushing news. I felt devastated the majority of the day.

I had gained so much weight in the previous couple of months, and I couldn’t even fathom that diabetes would be something I needed to be concerned about. I’ve always fluctuated with my weight — 240 lbs to 255, back to 245 lbs, then up to 267 lbs. I’d prided myself on passing a certain number, mainly because I couldn’t see myself being anywhere near close to being 300 lbs. Alas, that all changed.

Problems with insurance coverage for narcolepsy medications

In summer of 2023, I started experiencing issues with insurance. This seems pretty commonplace within the narcolepsy community. Heck, maybe it’s just prevalent among anyone suffering from chronic illness who needs treatment.

This insurance struggle was different than any of the others; this time, I was being told that I no longer had insurance, and that resulted in a loss of access to care. That included the stimulants that I'd been on to treat my narcolepsy symptoms, mainly my excessive daytime sleepiness and my cataplexy. The medication I was taking was a godsend, and it got me so far in the improvement of my quality of life. Now, that was nonexistent. I no longer woke up every day and took the meds that were so vital to me. Then the results followed.

Setting some new goals

I gained weight, going from around 260 lbs in July to 310 as of the first of December. That’s about 50 lbs in 4 months. I look back on all the times I felt extremely tired after eating something with heavy carbs and associating that with narcolepsy. Turns out, it was insulin resistance. Like I mentioned earlier, very hard to hear; however, I now have to set some new goals.

The doc says I need to shed some weight and exercise around 150 minutes a week. I am dreading this because this means my lifestyle has to change.

Taking steps toward growth

I told my girlfriend, and she was attentive and sweet; she tells me that we can get through this together. We will. In order for my life to change, my thoughts have to change, and although that is not easy, it can be done.

Being a business owner of a company dedicated to raising awareness for sleep disorders, it is imperative that I start to follow my own advice and take steps toward growth.

I appreciate all of you for taking the time out to hear my story. Have you struggled with lifestyle changes? If so, and you feel comfortable sharing, please do so in the comments. All of our stories matter.