A Typical Day in My Life as a Person Living With Dysphagia
From the outside, a person with dysphagia often goes unnoticed, unlike someone with a visible physical disability.
Yet their daily life is organized down to the minute.
For more than three years, following a medical exam that went wrong, I have been living with a tracheostomy and a gastrostomy.
Here is what my days look like.
Morning: a highly structured start
I wake up early, between 4 and 5 a.m. My first gesture is always the same: making my coffee.
I’m addicted to it, and it’s probably the last thing I would ever give up.
Because of the severity of my dysphagia, I add E‑Z Thick to reach a pudding‑like texture.
So I drink my coffee… with a spoon.
While I enjoy this moment, I do my throat‑strengthening exercises as well as my vocal exercises.
For breakfast, I have a bowl of fresh fruit salad from the market, without syrup, and I administer a bottle of IsoSource Fibre+ through my gastrostomy.
My medication is crushed into powder, since I can no longer swallow pills, and is also administered through my gastrostomy.
Meals are slow, eaten in an upright position, with small bites and regular pauses to avoid fatigue.
After eating, I clean my gastrostomy and my tracheostomy.
Late in the morning, I drink water using an oral sponge, then continue with my daily activities.
I also take out from the freezer whatever I planned for lunch.
Lunch: often the most important meal of the day
Preparation takes time: blending, chopping, thickening when needed.
My plate usually includes blended and molded fish, pork, or chicken, served with very well‑cooked vegetables cut into tiny pieces, and mashed potatoes. I also take another bottle of IsoSource.
With a puréed diet, it is almost impossible to reach the number of calories needed to maintain weight and avoid malnutrition.
I always check the temperature of my food, because too hot or too cold makes swallowing more difficult.
I eat in a calm environment, without distractions, so I can stay focused on each swallow.
After the meal, I remain seated for 20 to 30 minutes to prevent reflux, then I clean my stoma.
In the afternoon, I have a snack: fruit purée, pudding, well‑chewed roasted lentils, or mini crisps.
I hydrate regularly using the sponge.
Sometimes I treat myself to a small glass of white wine (half a cup) with ice, which I drink with the sponge.
There is no risk of exceeding any limit — it takes me almost two hours to drink it.
Evening: a light meal and a touch of frustration
Dinner is usually the lightest meal of the day and includes another bottle of IsoSource.
I sometimes feel frustration when I see my partner eating normally, but I’ve developed strategies to keep some pleasure in the meal: a nice presentation, varied flavors, colors.
Night: between cravings and fatigue
In the evening, I watch TV with my partner… and I drool over all the fast‑food commercials.
My brain hasn’t forgotten anything: the taste of a sub, a pizza, a hamburger, or any other food I will never be able to eat again.
What I miss the most are fresh fruits and vegetables — especially a Caesar salad.
About an hour before bed, I crush my medication and administer it through my gastrostomy, then clean my stoma and my tracheostomy.
Fatigue sometimes hits hard, because dysphagia requires enormous mental and physical energy.
I sleep in a semi‑sitting position to help mucus drain during the night.
In Summary
A day in the life of a person with dysphagia is shaped by:
• constant vigilance,
• texture adaptation,
• intentional slowness,
• rehabilitation,
• fatigue management,
• the search for safety at every meal.
But it is also marked by great resilience, adaptability, and the determination to preserve — despite everything — the pleasure of eating.
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