I miss… midnight snacks and being able to sit myself up in my electric bed to have a drink during the night. Since starting nocturnal NIV (non invasive ventilation) this small pleasure has become practically impossible since I have a mask bound tightly to my face. Drinking is possible with a nasal mask but eating is very difficult as there is an increased risk of aspiration.
I’m thankful… I can eat whatever I want and am still able to feed myself. Unlike many with muscular dystrophy, I don’t have a PEG feeding tube and so all my calories and nutrition comes from the food I put in my mouth. Although I get very full on small quantities of food, I do like to go out for meals with family and friends.