A Small Thing that Brings Me Joy
I drink a lot of Coke.
People have strong opinions about that. For example, “But do you know how bad it is for your health?” Or, “You should cut out Coke and follow this generic diet, and your health will improve.” Or, “Maybe you would feel better if you drank less Coke.”
Enjoying a can of Coca-Cola. (Photo by Retha De Wet)
Whatever you’re thinking, I’ve probably heard it already.
It’s important to understand that I am by no means advocating Coca-Cola as an effective treatment for myasthenia gravis (MG). But Coke does help me manage my health.
Objectively speaking, I understand where my critics are coming from. Beyond its other unhealthy properties, Coca-Cola is full of excessive amounts of sugar and caffeine. Caffeine isn’t safe for everyone with MG, which is why it is important to know your own body. Personally, the temporary energy boost of caffeine outweighs the cons — for example, how Coke affects my stomach in conjunction with Mestinon (pyridostigmine). Everyone who takes Mestinon knows about its digestive side effects.
Did I mention that I really like the taste of Coke?
I adore Coke, and I’m tired of having to explain that to people. Surely, as an adult, I should be left to my own devices, as long as I don’t neglect any of my adult duties. Especially if I don’t neglect my duties because of the energy boost that Coke gives me!
Coke is my small way of rebelling against the medical community. It energizes me physically without requiring me to take more medications. Emotionally, the joy each sip brings is enough to put a smile on my face on a difficult day. I also live in Africa. It gets hot here, and heat and MG are not friends. It’s difficult to argue that there is anything more refreshing than a cold Coca-Cola on a hot day.
I think that every person with MG needs to find their version of Coke. We need something that makes us feel better on bad days, a thing that empowers us and brings us joy without too much physical exertion. Coke is one of the few things that I liked before falling ill that I can still enjoy independently. It also can spark a conversation about a common interest with strangers. Not only chronically ill people enjoy Coke!
Coca-Cola has become my guilty pleasure, and I am grateful for it. Now, find your version of Coke and enjoy the beauty of life.
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Myasthenia Gravis 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.
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Comments
Chuck
"Find your own version of Coke" - I like that! It definitely helps to have something that's mine, my pushback against all the scheduled medicines and the lack of control over how my body is going to respond to requests to do things! For me it's coffee - most of the time it has to be decaffeinated but if I'm dragging and can sneak in a regular coffee - yay!
I love your posts!
Shane Tarr
Ha I live in Thailand and rumour has it I developed MG after being envenomated (no not bitten because that per se does not lead to venom entering the bloodstream). I was told no more wine: indeed no more alcohol. So what did I do? I went out and purchased some decent but over-priced South African wine and felt great. So, each night I try some good wine (well occasionally more than "some" and from time-to-time beer and CBD Oil). Am I any worse for it? Physically perhaps but psychically no! Thus, medical experts that tell you to behave yourself should be listened to but not always should their advice be heeded.
Jan
I can’t think of anything good about Coke! Everyone in the medical field is against it for one reason or another. I loved Dr Pepper and didn’t think I could ever go without it but my Dr pleaded with me and I gave it up! Please try giving it up! You’ll never know unless you try! My new drink-H2O with ice!
Mary
I can't understand why it should matter to you whether someone else drinks Coke. Everyone should have the freedom to make decisions about their own lives when the result of exercising that freedom doesn't affect anyone else negatively. It's obvious that Retha already is familiar with all the argumants against soft drinks. A small joy is a wonderful thing when it doesn't harm anyone else. I can't think why Retha's Coke drinking should have anything to do with you.
anna sheldon
I get headaches quite frequently and to reduce the amount of headache medicines I take, some of which contain caffeine, I stared drinking coffee in the morning, usually only one cup. it seems to help somewhat. any research on the effects of caffeine on mg patients (I have ocular diagnosed 2 years ago) and am 85 years old.
Katie Groves
I like Coke / Pepsi as well and is my guilty pleasure. Due to my weight gain, I've tried to limit them, but that makes them more delightful to me, and the caffeine helps when I feel very tired and weak. It is important to know, however, that caffeine is a diuretic and it would be a good thing that for every coke you drink, drink that much water to stay safely hydrated, especially in heat. Enjoy that guilty pleasure.
Marva Binkley
Wow! I too have ocular MG. I was diagnosed at the age of 30. I thought I was dying. I had double vision and was so very weak. I had a thymectomy after about 2 yrs. I have been in remission for some time, but still have issues with fatigue. I too like to enjoy an occasional coke, preferably cherry coke! I know it is not healthy, but it sure does put a smile on my face!! Take care!
Kern
Hey. My doc prescribed CellCept, and it seems to help even more than Mestinon alone. Hard going in NC, where working hard for hours is de rigeur. On meds, doable. Off, I am an extra from a zombie movie, shuffling to my van.
Else Seligmann
I'm delighted to see someone post this in a public forum. I would not have got through the 2 years of struggling towards a diagnosis of MG without my energy drinks and coffee. It gave me brief respites of clarity and energy. I would not recommend it as a doctor myself, but would have been glued to the couch without it. And the pleasure of sitting still with something you enjoy....! It is the only relaxing activity that someone cannot interrupt: "Could you?....it's OK, I see you're busy".
Dawn Hicks
I can understand why she drinks Coke. My go to is coffee, then sugar free Coke. I do take less meds. for my Myasthenia then. Everyone;s body reacts differently to MG. I was diagnosed in 2019, and I had never heard of it before. I thought I was losing my mind. My body had a mind of it's own. Drink what makes you happy!!!
Bridget H
Love your article Retha. I’m glad I’m not the only one. Coke is my happy place and my woobie (security blanket). Refractory generalized sero-neg MG is a tough road as is every MG diagnosis. It’s easy for others to armchair quarterback but unsolicited advice is often hurtful and mentally fatiguing. Enjoying my Coke is a well earned gift to myself for making it through another day of coping with this horrible illness with my gratitude and sense of humor still intact. Thank you for reminding us that we are allowed small joys in our life without feeling like we are being judged.
Elvira Reynolds
I am glad to meet others with this diagnosis, I learning how to deal, the struggles are real. I love coffee and not been drinking it. Will try decaffeinated.
Willie Coertzen
I am 80 years old and MG was diagnosed 4 years ago after the sudden death of my wife. We did not simply love each other - we were totally in love for 57 years, and I think the shock of her emise brought the symptons drastically afore. I am also diagnosed with Parkinsons Disease, and between the two, they are rapidly gnawing my life away. I do not fret about it, I am a born-again Christian for more than 50 years and death to me is really the beginning of life at its best.
I am on Mestinon 30mg 3 times p/d and I experience short moments of strength after each dose. However, I also take Carbilev 25/100 for Parkinsons, as well as Unat (Torasimide) for foot swelling, How these react together or against each other, I don't know. I am at the beginning stage of swallow and breathing difficulties and personal hygiene.
I live life as well as I can by the grace of my Saviour, Jesus Christ, and I am grateful for what I still can enjoy.
Garth Andrus
Someday when I die I hope someone will leave Diet Coke on my headstone in case I’m thirsty