Hi :)
So i started back at college on Monday, and its been great actually, apart from Lucy not being here! Its so weird and a bit lonley without my evil companion ;) My lessons are good, my class mates are great - they actually talk to me haahaa and are not totally freaked out! Which is cool :) I had my MRI results when i went to clinic and they said my muscles are very small/ wasted away and my worst affected muscle is my bum / pelvic muscles haha i have a tiny bum ;) And my calf muscles are so tiny and have been replaced with fat.... hahaaa
My swallow is still not working, i had a video X-ray of my throat / swallowing muscles and the trigger that makes you swallow is not working properly so it doesnt trigger the actual swallow so food / drink just stays in the back of my throat and if i breathe while its still there then i will be in big trouble.... So i have not eaten anything in over 28days..... hard to believe i know!!!! i miss the tastes but im not hunry.... ever! its so weird, and weird to think i get everything i need in a bag of liquid or 2 everyday! Amazing what they can do these days!
On the down side i get waves of sickness hit me througout the day :( i feel so sick i have to stop my feed and breathe through it, its awful! But the plus side......................... since i have had my NG tube my lungs have been so clear its unbelieveable! I dont need my physio hardly ever! i used to have to do it at least 2 times a day for 20mins and now maby one huff in the day and thats it! (CFers will know what i mean!) Its kind of proved to me that food / liquids have probably been going into my lungs. The consultant wanted to put in an NJ tube to replace my NG tube ( a tube into my intestines instead of just my stomach) but i said no! Because in 1 month if my swallow is not better i will be gettin a PEG feeding tube placed and that would of meant 2 procedures instead of just the PEG one so i said i would just wait for the PEG tube. I dont want extra pain/ procedures if i dont actually need them!!!
Anyways thats all for now!!! Just want to wish good luck to Lucy and everyone starting Uni this year!
Chloe :)
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