Writer Kate Thomas will one day need a feeding tube, so who better to chat with than Maddy Reid, a woman hellbent on helping others love life with her NJ tube in tow.
Maddy Reid has listened to the Harry Potter audiobooks over 1000 times, which explains why she named her nasojejunal (NJ) tube ‘Tubius Hagrid’.
Tubius Hagrid has been part of Maddy’s life since early 2023. Prior to this, she was diagnosed with gastroparesis, a condition making it hard for her stomach to digest food.
As a curious tubie-to-be myself, I sat down with Maddy to discuss what it’s like to live with a feeding tube, some of the surprising challenges, and the magic of ‘glimmers’.
Here are a few of the gems she shared:
“It’s okay not to feel great”
Having a feeding tube has been life- changing for me. I was in such a dark place physically, which impacted my mental health hugely as well. I gaslit myself into thinking that my condition shouldn’t be affecting my mental health as much as it was.
I don’t know one person with a chronic illness who hasn’t been affected by mental health [challenges]. We believe we’re being overdramatic for being anxious or depressed because of what’s happening in our lives. I think people might see me and think, “oh, she’s happy”, but I still really struggle. But it’s okay to not feel great.
Chronic illness can completely change your entire life. It upended mine. I was unable to work and have only recently started trying to work a few hours. It’s hard to apply for jobs where you want a three or four-hour shift, maybe twice a week.
It’s important to acknowledge that your chronic illness is affecting your mental health and to have people on board who will check in.
‘The magic of social media… and glimmers’
In 2020, when I was getting my first feeding tube, I found an Instagram post about tube-feeding. I remember feeling so alone at the time and then realised that I wasn’t.
That’s the magic of social media. In a weird way, it’s nice to know that other people are experiencing what you are experiencing, even though you don’t want anyone else to experience it.
That’s when I realised that I wanted to be able to bring some light and positivity to tube-feeding. Not to take away from the reality of what people experience, but I just realised that it’s so easy to get bogged down in your own negativity or in the negativity of the world. So I created my social media account @paralysedwithlove, to bring some love that still exists through all the negativity and sadness.
I like to get a little glimmer, even when everything can seem so grim. You might be stuck in hospital, but you had a really nice nurse. That’s the glimmer and it can be all you need for that day to keep you moving through. And I think that’s the sort of stuff that I want to be able to bring.
“You don’t realise how much of life is literally waiting for the next meal”
There were so many little things to learn when I first got my feeding tube. Including how much food plays a part in our lives. It’s everything! Even at the cinemas, everyone around you is eating delicious popcorn.
As I’ve gotten closer to being nil-by- mouth, it’s been a lot harder. Isolation comes with not being able to eat the same as you might have previously.
Going out to a café with friends is no longer the same. You feel separated on a social level. Every now and again I get a real boost and want to cook for my family or look up recipes for people that I know they’ll enjoy. My love language is still to create for people and, when I focus on that, it doesn’t bother me as much.
“The saying ‘your body knows best’ is so true”
If you are questioning yourself about whether you need to seek a second opinion, think about what you would tell your best friend. Chances are you probably should. You want to have a team of medical professionals that you completely trust and feel like you can be upfront with. You want to be able to say to them, “I ate a whole packet of chips, I know that I shouldn’t have, but I did”.
I think that’s been huge for me, having professionals around me who have my back. I’m very lucky and I know for some people it can take years. I’ve had doctors who have dismissed me, told me that I wasn’t sick. I remember thinking I was wrong, that they’re the doctor, they’ve trained and are a specialist. But I had to trust myself and my instinct to look for another doctor.
I ended up finding a fabulous specialist who, in my first appointment, said “I think you need a tube”. At that point I was overweight and he didn’t even question that. He was on the money straight away, it was so validating. The saying ‘your body knows best’ is so true.
“I’m never embarrassed when a stranger asks what my tube is”
Since getting my feeding tube, the biggest change for me has been the mental clarity that I’ve gained.
I didn’t realise how foggy my mind was before. I’m reading again. I think I’ve read 67 books this year since getting the nasojejunal tube. I can catch up with my friends and be more active in our conversations. I’ve also accepted a part-time university offer for next year, started moving my body and exercising – lightly – and so much more. And I can work on my mental health more than I’ve been able to in almost four years.
Life is still hard and I’m still not where I want to be, but there are so many positives that Tubius has brought me and I’m so, so grateful.
Because of all of this I’m never embarrassed when a stranger asks what my tube is or ashamed when I need to have some extra help with things. I just can’t see how I could be ashamed of something that has done so much for me and my life.