Tag: I miss I’m thankful

I miss… being able to eat without becoming uncomfortably full, breathless and fatigued after small quantities.

I’m thankful… I can still eat normal food and don’t have to use a PEG feeding tube for sustenance.

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.

I miss… sitting in cars on a car seat, particularly the front seat, rather than having to travel in my wheelchair. These days I have to travel in my electric wheelchair at the rear of my Motability vehicle, as transferring is just too difficult.

I’m thankful… for my wheelchair accessible vehicle which allows me to get out and about with ease. I no longer need to be manually lifted in and out of cars. It makes life so much less stressful.

I miss… playing my clarinet, which I can no longer play due to my declining respiratory function (I was pretty good too!)

I’m thankful… that having now sold my clarinet, someone out there is learning to play and getting as much enjoyment out of it as I did. Plus I’ll always have the knowledge of that achievement. I LOVE music and listen to some form every single day, though I’ve never been a natural musician myself. So to have learnt to play an instrument to a good standard is something I’m proud of.

I miss… bumping down the stairs on my bum as an infant. ‘Bum shuffling’ as my mom calls it kept me pretty mobile around the house as a kid.

I’m thankful… I can still sit on the sofa if I want to and don’t have to remain in my wheelchair all day. It’s good to move around in order to remain as flexible, and as comfortable as possible, even if like me it means being manually lifted.