The Unseen Hours

Life between the visible moments ~ chronic illness & the quite days

[theunseenhours]

My weight vanishes, my bone protrude

Yet I’m “not sick enough” for a tube

I’ve not ate for weeks and liquids reject

But my bloods aren’t low enough for help

I’m inside a body that is slowly failing



[theunseenhours]

Tomorrow is my girlfriend’s 18th birthday! I have been planning this for months and I’m really excited.

But also nervous, I’m not well at the minute at all. I can barely stay stood up. I know I need hospital care but I just want to make it through this one day, that will be my accomplishment!

Even though I won’t be able to dance, drink the cocktails I’ll be making, or eat the buffet I’m doing I just hope she enjoys it.

Even when my body’s giving up I won’t give up loving her.

[theunseenhours]

My body hurts today I feel so exhausted I don’t know how much more I can handle.

[theunseenhours]

Another A&E trip 😒

2 bags of fluids later and I feel a bit better, I wish it wasn’t temporary.

Some may think I’m crazy but I’m doing everything in my power to avoid admission until the 15th of June as that’s when my girlfriends surprise birthday celebrations (I planned) are over. I pray I can stay out till them 🙏🏽

I know I need hospital care now but a girl can dream!

[disabled-bug]

Idk what person with chronic illness needs to hear this, but you can do things to make your responsibilities nicer for yourself. You can get an ice cream after a blood draw. You can sit down for tv time after an injection. You can pick out the bandaids that have cartoon characters on them instead of the plain ones. Being an adult doesn’t stop you from benefiting from encouragement. Go for whatever fits with your routine/abilities/budget and makes life a little better. A spoonful of sugar helps the medicine go down etc etc

[theunseenhours]

Today has been rough I found out no one is going to help me until July 16!

I’m rapidly loosing weight, having less then 300cals per day, dehydrated, malnourished, vomiting after everything I try, and so much more.

Why is the NHS so bad at preventative care?

I have literally been told by A&E staff

“your kidneys aren’t failing… yet”

How is this acceptable to treat people this way?

[theunseenhours]

I hate this stupid condition!

None of my clothes fit anymore, my hairs coming out in clumps, I fall over like a sack of potatoes, and I have to carry my sick bowl everywhere I go.

I wanted to be better for my girlfriend’s birthday but instead I’ll potentially miss it while I’m hospitalised for my tube placement.

I just wanted this small win.

[theunseenhours]

No one talks about how long you have to wait when already needing “urgent” treatment, everyday I’m getting weaker this NJ can’t come fast enough!

[im-out-of-it]

it’s funny how many expectations are put on the disabled and chronically ill. if any abled person experienced even 7% of our symptoms, they would be going straight to the ER and say they couldn’t do something because they have to recover. yet when they talk to a chronically ill person, the expectations are so high. “you should be managing that by now. why don’t you feel better? you can’t expect everyone to feel bad for you and support you 24/7” like yall would be crying and begging to go to the ER if you had one of our symptoms. we get told to get over it and stop being an inconvenience

[theunseenhours]

The nights are the hardest.

Sleep feels impossible lately. Waiting to be admitted feels cruel in a way that’s difficult to explain. At any moment the phone could ring, and with the drop of a hat, life as I know it pauses.

When my mind won’t switch off, I find myself thinking about how much an NJ tube is going to change things. I know it’s something I need, but that doesn’t stop it feeling isolating.

I went to a family dinner recently and couldn’t order a single thing. Sitting there while everyone else ate made me feel like an outsider looking in on a normal life that I can’t quite reach anymore.

Then come the questions.

“Why are you so thin?”

“Why aren’t you eating?”

I know people are usually asking because they care, but it still drains me. Every explanation feels like reopening a wound. It forces me to confront, again and again, just how little control I have over my own body right now.

Tonight is one of those nights where everything feels heavy.

So I thought I’d write it down.

Maybe that’s what this space is for—the thoughts that are hardest to carry alone.

If you’ve found yourself in a similar place, you’re welcome here. 👋🏽