When I was first diagnosed with myasthenia gravis, I already was headed for a crisis. I had been battling symptoms for a couple of months, yet all of the doctors told me they were psychosomatic. They said that if it wasn’t anorexia, then it must be something similar.
By the time I first saw a doctor, my weight had dropped to a disturbing 45 kilograms (99 pounds). I could barely manage to eat a quarter jar of baby food in one day. At times, I had to mop up my own saliva because I couldn’t even swallow that down. But with medication and constant treatment, things have definitely improved.
Following are a few lessons I learned on my chronic illness journey.
Being unable to swallow means swallowing nothing at all — not even water. So, being told, “Just drink something at least,” doesn’t help. The muscles in my mouth and throat don’t work to push food or drink into the stomach. I once even choked on water while trying to prevent dehydration.
Alcohol often exacerbates the symptoms and causes more slurring than usual, as well as extreme weakness throughout the body. Some types of alcohol are worse than others. For example, I have found that white spirits don’t hit me as hard as others. But I still need to drink in moderation and listen to my body when it says “no more!”
Lettuce also is not my friend. Too often it becomes stuck in my throat about halfway down, where it remains without moving. This causes me to choke, and I have previously turned blue before my husband was able to stick his long fingers down my throat to pull it back up. I don’t have a gag reflex (one positive thing, I suppose), so I need to physically pull the food out rather than trying to allow my body to sort it out.
I also have had the Heimlich maneuver performed on me, and although it forced the food out, it also resulted in a cracked rib.
The same goes for anything “floppy,” so I am careful with spinach, cabbage, and other similar food items. It is important to cut these items into small, manageable pieces or avoid them entirely.
I am South African, and we LOVE our meat. There is nothing better than a good steak or hunk of meat on the “braai” (barbecue grill) with friends, but the effort of chewing it is too much to cope with. I have choked on meat before. I also have been unable to bite through a piece of meat and had to rush to the bathroom to pull it out of my mouth before any serious trouble happened.
My husband now watches me carefully when we are out, as he sees the signs before I start panicking. This is awful for me, as I would love for him to sit back and enjoy a relaxing time. But we need to stay on top of things.
I’ve added protein shakes with superfood powder to my diet. Because I can’t eat many foods, and I often live on the “not-so-good” ones, such as ProNutro, yogurt, baby food, and mashed potatoes, my body has been strained. I need to supplement my meals whenever possible. Tablets are a chore to get down and often must be crushed. (Yuck!) Thus, I have found that a shake is the easiest and most efficient way to get some goodness.
Yogurt and other milkier foods and drinks can cause an excess of “stickier” saliva, which can be an absolute chore to get down. This aggravates my ability to lie down, and I often have to cough to clear my throat and attempt to swallow again. It is so difficult to try to explain this to someone who hasn’t been through it. It’s an action that most people don’t have to think about.
I would like to say, though, that if you have MG, don’t give up. Find foods that work for you, have extra stashed at home for bad days, and always ensure that the those around you know what to do if you start choking on your food. Don’t be embarrassed by this, but rather make sure you are on top of the situation.
Take care of yourself, as you are beautiful. xo
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