3 rules I use to manage my PNH while food shopping

About a month after my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), I went to the supermarket because I needed a few items. I didn’t listen to my body at all or gauge how much energy I had; I wasn’t used to that new responsibility, which PNH required. I still had the mindset that if it was on my to-do list, then it was the next thing I had to do.

During my shopping visit, my energy began to tank. I was flustered and unsure what to do.

I called my husband, John, and asked if he could come help me. At this point, I was leaning all my weight on my shopping cart to hold me up because my legs felt extremely heavy. John could hear the panic in my voice and knew just what to say. I don’t remember his exact words, but I know he calmed me and gave me the confidence to regain my strength. By the time he was about to get in the car to come get me, I remember telling him not to and that I’d try to finish quickly and make it back home.

That moment was a huge turning point for me. It was the first time I realized I was not in full control of my body anymore, and it was unsettling. The hit of fatigue was a brick wall I wasn’t expecting, and I didn’t know how to process it until the call with John, which helped me stay focused.

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Before I had to deal with allotting my energy for the day, I was on my own schedule; I could do whatever whenever I wanted. But now I have to ask myself an important question when I leave for anything, especially for food shopping, because of that first experience: “Do I have enough energy for this?”

I need to make sure I have enough energy to get in the car, drive to the store, walk around to collect everything, take it all out of the cart to scan, load it back in the cart, walk to the car, pack it all in the car, drive home, carry it all inside, and put everything away. Food shopping can be a daunting task for someone who doesn’t have a rare disease, but for someone with fluctuating energy, it’s intimidating.

A new layer of intimidation was introduced when I started going bulk shopping at wholesalers, such as Sam’s Club. The shopaholic in me loves browsing through the aisles, but shopping in bulk means bigger boxes, heavier items, and more trips carrying everything inside the house. All of that means more required energy. When I go to Sam’s Club, I need to time it out perfectly to ensure a successful trip.

Although the ideal solution is shopping with John, sometimes our schedules don’t line up, and I end up going by myself. I got into a routine of being mindful of my energy while shopping alone, but then I had my daughter, Joelle, and that opened a new can of worms. I then had to start planning the timing around her nap and eating schedule while coordinating it all with my energy level.

Shopping rules to live by

While trying to plan the best experience when shopping, I created three rules for myself in hopes that I’ll never have to relive that upsetting supermarket phone call to John, asking him to come rescue me.

1. I make sure I don’t plan anything important for bulk shopping days in case my energy is gone afterward. I don’t want any sort of pressure to get anything else done the same day. Going shopping is a big enough win.

2. I make sure to have a shopping list with important items highlighted so if I do need to wrap up quickly, I’ll get what I need the most. I also aim to make the list follow the order of how I walk in the store and what departments I’ll visit, so I can shop more efficiently instead of bouncing around from place to place when I forget something.

3. And before I leave home, I clear my countertops, fridge, and freezer so that when I return, the unpacking can be smoother and quicker. This often-frustrating step is the last of the entire process, so I preventively try to make it as easy as I can by having a clear workspace.

Note: PNH 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 provider 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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