I miss waking up in the morning and being completely refreshed. I miss being able to work a long, busy shift on a Sunday, and then head out to drink and dance hours later, without consequence. I miss not having to swallow handfuls of pills every day. I miss convenience – and I never knew just how easy life was until I was diagnosed with lupus.
There are no shortcuts when living with a chronic illness and there likely never will be another day that I’ll consider simple, effortless, or easy by the average person’s standards.
My renal doctors have prescribed me the anti-rejection medication mycophenolate and built me up to tolerate six tablets a day. For the past few months I’ve taken them 2-2-2 — two in the morning, two at midday, and two at night. At my last appointment, we discussed the possibility of me taking starting a 3-3 dosage so I didn’t have the inconvenience of carrying them around throughout the day.
I gave it a try simply to make my life easier, especially because, working in hospitality, we sometimes don’t have the luxury of stopping at lunchtime at all, let alone to take tablets. However, it wasn’t to be. My body couldn’t cope the extra tablet twice a day and I’m back at square one, unable to take to the easy road.
I can deal with most things that get thrown my way, and although it has gotten easier with time in some respects, the lack of convenience in regard to what I can and cannot eat is still my greatest obstacle.
A couple of months ago, while I was still adjusting to my new low-sodium/low-potassium diet, I remember walking into a shopping center food court near my university after class, before walking straight back out a minute or so later empty handed and still hungry. Other than Subway, which I already had eaten a couple of times that week, there were no options for me and I drove home, frustrated to tears over the challenge I faced just trying to fulfill my basic human urge to eat.
No Convenience at the Store
If I’m to make sure I treat my body how it deserves to be treated, there are very few shortcuts to eating. A trip to the supermarket for me consists of reading at least 30 or so labels for their sodium content. The majority of the foods I come across or used to eat are not only too much for a meal, but some would demolish my entire daily sodium allowance in one fell swoop.
I’ve regretfully had to say goodbye to bacon, salami and pretty much anything that fits under the category of cold cut, processed or cured meat. And, while I know that giving them up – along with most snack and takeaway foods – can only be good for me, it makes a huge portion of the supermarket off limits.
As I write this I’ve got a big pot of salt-free chicken stock simmering on the stove. Even though a single carton of salt-reduced chicken stock is within the parameters of my diet, by the time I’ve used two or three litres to make a soup or curry from scratch, I’m sure it’s no longer fits under the “low-sodium” classification.
Every time I think I might be putting too much sodium or potassium into my body I feel guilty, knowing that it’s potentially hurting my poor heart and kidneys, forcing them to work harder than needed and only aiding lupus in its mission to wreak internal havoc.
I want the convenience of being able to walk into any restaurant and not have to mentally pick the menu apart, and too often I silently wish I could open the kitchen fridge, pantry or freezer and eat whatever I want.
But those days are long gone.
I’m learning to love food in a new way, in that I have to pour hard work and time into every meal. It’s not just about meaningless meals anymore; it’s become my gift to myself and my body. It’s become a labor of love.
Note: Lupus News Today 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 Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.