I’ve been nil by mouth for over three months now, and I won’t dress it up: I don’t dislike it. I hate it.
Not being able to eat or drink doesn’t just feel wrong – it feels profoundly unnatural, because it is.
Eating and drinking are among the most basic human acts. They are social, sensory, comforting. They anchor you to normal life. Having that stripped away leaves a quiet but constant sense of dislocation, as though you’re watching life happen from the other side of glass.
Instead, I’m fed a liquid diet through a plastic tube that goes directly into my stomach. It sounds clinical. It is clinical. And it is anything but easy.
At first, I relied entirely on artificial feeds. In theory, they are nutritionally complete. In reality, they caused significant problems – persistent inflammation, diarrhoea, discomfort, and rather than helping me regain weight, they did the opposite. I lost weight. Formula after formula was suggested. I tried each one with hope, because hope is what you do when options are limited. Each time, things got worse.
Eventually, I decided to take some control back. I had to take the reins on this one. The cavalry weren’t coming.
I moved to a hybrid feeding regime – continuing with artificial feeds, but also blending my own food experiments and syringing them down the tube myself. It’s far from glamorous, but it has helped. I’ve put some weight back on and the bowel issues have eased somewhat. That small improvement matters more than people might realise.
But let me be clear: I don’t want to be tube fed.
It is time-consuming. It is messy. It is exhausting. And it is deeply demoralising. Feeding dominates my day.
Between feeds and blends, around eight hours – roughly a third of my waking life – is spent simply keeping myself alive. That means I can’t do very much else. I can’t go far. I can’t be spontaneous. Life has to be planned around pumps, syringes, giving sets, schedules, and energy levels.
What no one sees is the sheer effort, patience, and frustration that tube feeding demands.
It’s relentless.
Every feed is a task, every task takes time, planning, and energy that most people never have to think about.
I wouldn’t wish it on my worst enemy – not that I have any enemies, but you get my point. It tests resilience in quiet, grinding ways. There’s no drama or heroics in it, just persistence.
And some days it feels like it’s all too much – but I can’t bail out. There is no opting out, no escape hatch. I stay. I endure. I keep going, because if I don’t feed then I’m self-harming.
Staying alive isn’t about grand acts of bravery, it’s about showing up for the unseen work, again and again.
I miss eating. I miss drinking. I miss the ordinary, unremarkable pleasure of a cup of tea or a meal shared without thought. This may be my life now, but it doesn’t feel like living.
Hospital staff have described this as my “new normal.” I understand why they say it – but it isn’t normal.
There is nothing normal about being fed through a tube. There is nothing normal about having survival reduced to logistics.
I’ve had a Radiologically Inserted Gastrostomy tube three times now, so I know the terrain. I know the routines. I know the compromises.
But this time is different.
This time, I’ve been told -very plainly – that eating or drinking orally would almost certainly lead to aspiration pneumonia again. Another Critical Care admission. And, quite possibly, not coming out alive. That’s not a risk I can take. So the choice isn’t really a choice at all.
What makes it harder is how feeding limits my world. Travel, especially abroad, now feels like a near impossibility. Logistically, it would mean transporting all my feeds, my pump, syringes, giving sets, and a blender. Picture airport security. Picture damaged or lost equipment. Picture being stranded without the means to feed myself.
My tube is my lifeline. Without access to the equipment that supports it, I wouldn’t survive.
Tube feeding has saved my life. I don’t deny that for a second.
But it has also changed my life in ways that are relentless and inescapable.
Everything now revolves around feeding. The pleasure has gone. The rituals, the tastes, the shared moments – they’ve all been stripped away.
What remains is function over feeling. Survival over satisfaction. This isn’t a fair fight.
This isn’t living well.
It’s living carefully.
It’s living cautiously.
It’s living to stay alive.
And for now, that has to be enough even when it doesn’t feel like it is.
Look at the photo above this blog: the most important detail isn’t the rock – it’s that the person hasn’t stepped away. I can’t step away.
This is too much.
And yet, here I am – still pushing.
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