What people dont understand, they dont / wont believe...
I Cant say i really blame them, if i were them it would be hard for me to believe too. But then again in this particular situation i would probably look a bit harder to find the truth. Listen to the person going through the daily life with a complex condition nobody really understands, and because no one else has it nobody knows what will happen next.
I have kind of had enough of people just telling me to 'stop giving them all that dying crap' when i say i cant breath and need physio and my ventilator on. Because quite frankly if you dont have 26% lung function, then you dont have a CLUE about how i feel everyday and that when i do ask for help i am actually deep down terrified that it will be my last infection, my last fight. I know it sounds dramatic and stupid; but to me and my family who have been told that i need to fight and keep going when im in ADU / ICU its pretty darn scary. Knowing that a chest infection could potentially make me pop my clogs (lol) is always niggling at the back of my mind. And unless you actually get my disease... you just dont get it. No matter how hard you try you will never fully understand. Understand how dam hard it is to get up when you vent is taken off every morning and takes your breath away and you spend the next hour trying to regulate your breathing. Understand how by 3pm your lungs feel so stiff, painfull and heavy every second but you have to put it to the back of your mind and carry on. Carry on and put a huge smile on your face, forget the struggle and live for that day because you can never get it back. Some days it gets too much, the pain gets so bad you actually cant breathe and the only thing you can do is take morphine and sleep, sleep and hope its over when you wake up. Everynight i wake up multiple times - sometimes i pretend im asleep from the night staff haha and i just think - what if this is all just a dream. Ill wake up soon and be a happy healthy 7 year old - or at least be at that stage of my condition before it effected me much.
I really needed to write this, get it off my chest haha how ironic! Anyways... the last few months its been bothering me a lot. Thinking about transplant and how likley it is for me to get one, college is getting to me a bit and because im so tired all the time im taking things to heart a lot more. Things that i may be taking to personally, that actually dont mean anything at all. And i am going to write about this person, not going to name them because they know who they are, and they wont read this so why not! Basically one of the people i actually trusted a lot is now avoiding me, telling me to shut up with all that dying crap when i asked for help as i could not breathe... and i am basically quite upset about it. Its like i can see her true personality for the first time. But i dont want her to be like this, i hate it!!! I would much prefer to get on with everyone but in life that just doesnt happen. I thought this person new me, new that i would never and actually could never make up being a bubbley drain pipe lungs! I just dont get it.... as i said im soo tired all the time these days that i am probably taking things way to personally. But its just how i feel and this blog is my way of getting it
out of my system!! haha even if nobody reads the crap haha!!!
But yea... i do have some amazing people around me, mainly my family but also my friends and actually some staff are pretty amazing too - they know who they are :) So yea..... im really really tired so im gunna buzz to go to bed and maby, just maby i will pluck up the courage to give this blog address to my house manager. I would love her to understand and known how im feeling but i cant say it, i have to type it.
Ok Bye!!! haha
Love you all ;)
And yes im thinking up my next naughty plan to cause mischeif in some way. It makes life more exciting ... mwhahahahahahah :)