' You don't look sick'
Many people often say 'Well you don't look sick' which is a compliment but when you feel so poorly it can be so frustrating. So I just thought I'd make a short blog post on the day to day life of someone with a chronic illness or someone in chronic pain.
So I may not look sick but I'm currently in hospital trying to get all the nutrition I can as I need this nutrition to stay alive. I'm currently needing IV (into the vein) steroid anti sickness to help my nausea, morphine and more for my pain and needing several drips just to keep my hydrated, I also am getting 3/4 hours sleep at the most due to the pain I am suffering from the nutrition I need.
'I may not look sick but a few steps send my legs to feel like jelly'- this quote is so true, earlier I went for the walk and I reached the lifts just next to the ward and i was already exhausted. Just because I may not look sick,doesn't always mean I aren't sick.
'I may not look sick but something as simple as a dose of paracetamol can cause agonising pain'-
this is another true quote, something as little as 20ml of paracetamol straight down my tube into my small intestine can cause me awful pain, this isn't how a once regular teenager should spend her life'.
'I may not look sick but I suffer from an extremely sensitive heat intolerance' ,
this can cause me to faint from something as little as a bath or even standing near heat'. Due to this condition I could even pass out/faint in a room that feels like a normal temperature to you.
'I may not look sick but every hour or everyday I'm fighting chronic pain' every minute of every day I'll have some sort of pain whether it is mild, moderate or severe. I get a wide range of aches and pains in my body, ranging from the top of my head down to the tip of my toes.
'I may not look sick but the smallest sip of water could make me awfully sick' due to a condition I have called Gastroparesis (paralysis of the stomach), the smallest bit of oral intake can make me really quite poorly. This is why I am tube fed as I can't sustain my weight and can become severely malnourished without my tubes.
These are just some of the examples I get on a day to day bases and although I may not look sick, looks can be deceiving! You may walk past many people daily who may be sick but you cant always tell by a single look. So think about what others may be going through before you judge them.
It's the invisible illnesses people think that because you can't see an illness your not actually ill. It's ignorance.
ReplyDeleteHi, I have only just come across your blog. But I find it not interesting, but I think you are strong! My daughter (she's 2 years old) has short bowel syndrome, so she's also on PN just not total, she lost 90% of her Bowel when she was born. She was left with 10cm and half of a colon but her large bowel is "mangled" as well. Although at the moment she is doing very well we are finding out that without the PN she pretty much will not survive, she's getting 100% of her nutrients etc through PN through 5 nights & the two nights that she is off she just drinks juice.
I'm sorry to hear that your in so much pain all of the time, it sounds horrible, I only hope that one day it stops for you. You sound like such a strong girl and thank you so much for your blog, I know the illnesses aren't the same but it's always nice when there's someone out there that knows a bit about what your going through!