Its going round and round in my head and im getting more and more bitter about it. I dont like the person I am when im bitter, it goes against the grain. Society tells us in a way that we should be grateful, that we should just suck it up and get on with things. That there are worse off people than yourself. That you should be pleased that you were saved however many times the count is upto now.
Its approaching my 7 year post transplant mark and people comment on how "marvelous" I am and how I must be so pleased that I was a lucky one who got the liver in time. That I must be so grateful to the donor family. But im not and trying to force myself to feel something that I dont its probably one of the reasons I feel so crappy. I think medical advances are great, but often there to extreme. I mean had I have been stabbed a few years previously there is no way I would have made it and I think thats the way it should have been.
Sure Im alive, but to what extent and with what consequences. I'm in and out of hospital all the time, always tired, constantly ill in some way. I spend most of my time going to hospital/doctors/surgical appointments. I mean 7 years post transplant, you would have thought that I most my problems would be sorted by now. But no, things are getting worse. I dont mean with my liver, recent blood tests show that that is working fine. I mean with other things. My blood pressure, pulse, blood sugars, hearing, tremor and even more so breathing problems.
And thats with looking at things such as the cosmetic side of things, the scaring, the odd shape abdomen. Having to remember to take your meds at the right time even if your not at home. Having to watch what you eat and what you drink incase it contains bacteria. Watching all your friends go out every night binge drinking, knowing you cant join them.
And of course then you have the psychological side of things. Permanently remembering things. Feeling anxious, depressed, alone. I doubt I will ever be in a relationship. I dont have the trust in anyone else. The way your pulse quickens and your breath catches when a name from the past is mentioned, when something comes up on the news and triggers your head to fill with thoughts, when an ambulance goes screaming past and a shudder runs down your spine, when you hear of someone in ICU and you swear you can feel the tube back down your own throat.
But Ive dealt with all that. Well perhaps dealt is the wrong word. I have lived through all that and coped, in sorts, with it. Its the new things that trip me up. When it feels like you are fighting a losing battle. When your knocked off your feet. When you want to throw a childish paddy screaming its not fair, what did i do to deserve this. When you dont think you can cope with anymore of what life hurls at you. When you want to lie down and scream stick a fork in me, im done!
The thought of the surgery I face in the not to distant future scares the crap out of me. I dont want them to put a permeant tracheostomy in my neck. But neither do I want to live as I am now, exhausted and gasping most of the time. Scared when you cant cough up the crap that is making your breathing so tight it feels like you are literally sucking the air into your lungs through a straw. Afraid to be alone incase you pass out. I know i need it done, its gotten to that point now. But its still going to be hard. I think this will probably be the hardest thing I have ever done.
I dont think that I have the self esteem for it. I mean come on, most people dont even know that I am deaf, because Im to vain to have people know that I need hearing aids, to know that I dont hear half of what they say, yet still nod and say ok. That I dont hear the lyrics in songs and may favorite songs have only got to that point as I have been able to look the lyrics up online.
So what will I do when I have a tube sticking out my neck? Sure during the winter it can be hidden under scarfs and turtle necks. But what about in the summer when I want to wear vest tops? What about when I go to a party with friends and want to wear a low cut top? or a nice party dress? A tube sticking out my neck is hardly the latest fashion accessory.
Im bloody 23 years old! I should be thinking about parties and boys, clothes and fun not how long it will take me to get dressed with enough rests in between to gather my breath, not to remember my meds, not how long I can manage between nebulisers, not what tops will cover up the most. I hate this. I hate the person I am now. I hate having to deal with all these issues. I hate how alone they make me feel. Sure I have people around that I can talk to,, but its not the same. No one I know knows how this feels. To be in and out of hospital, to always be on some form of treatment. To be so out of breath you cry in fear, which only leads to worse breathing.
I mean dont get me wrong, im so glad none of my friends have to go through this, but it would be nice to have someone there who understood, that knows whats going through my head without me having to voice it. To see through the facade.
I dont want this, I dont want any of this.
I dont think I deserve it. What did I do that was so bad that I had to be punished in this way?
Im just so damn bitter and I hate it.
Hopefully getting some of this moaning out will allow me to become more positive again. Or at least for me to pretend im feeling more optimistic. Because nearly breaking down in a classroom full of people when your asked how "all the hospital stuff" is going, is not fun, believe me.
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