You may think of me as quiet, anti-social and quite frankly, boring. At least that is how I feel that I am perceived, and it can get really upsetting for me because this simply isn't who I am. That is not my personality, I was loud, I laughed, I was always up to some kind of mayhem and it destroys me that I can't be myself around my friends. My autonomic dysfunction really affects my cognitive processes, and as I am in pain every waking moment of each day it can be very hard for me to keep up with conversation or make myself present when hanging out or going out. This is especially hard for me in groups of more than two people, not only do I have to try to keep up with what is going on but I also need to consciously make the effort to breathe. Yes, I said it. Breathing is not an automatic function for me, so I have to make sure that I keep breathing so that I don't lose consciousness.
When I say that I can't do something, it is not because I don't want to but because the activity in question will most likely damage me in some way. This is one of the biggest ball aches, not being able to do extracurricular activities because my body simply won't allow it. I can't really take care of myself, and I am pretty dependent other people to help me at times to complete simple every day tasks such as dressing, bathing etc. This is very embarrassing for me to admit, I used to pride myself on being so independent, I rarely asked for anything. And now, becoming dependent has really taken its toll on me. I want to be able to do all of these simple things for myself, and to then be able to spend more time doing the things that I love which I either cannot do at all or only in moderation. There are things that I want to do more of, such as gaming, blogging, raising awareness, get better so that I may one day return to work but most importantly I want to have adventures and make memories with the beautiful people in my life that I love dearly.
I really do love you guys, so much. Without the kind words, support and love you have given me I would not be able to fight this disease. Naturally, I suffer from depression because of the low quality of life my condition has forced me to have. I really couldn't continue facing all of the problems that are drowning me if I didn't have you by my side, particularly my partner. He is my rock, my biggest support and I can't thank him enough for making my life bearable. Without him it is safe to say that I wouldn't be here, he saved my life and for that, I owe him everything. Also, without him I wouldn't have met a handful of people that I think are some of the greatest people to ever walk the earth. Having such a rare illness spurred me to join a Facebook support group, and through that I have met brilliant people that I can proudly say are part of my zebra family. I love you all, so very much you give me hope that one day things will be different..
My condition is unpredictable and can strike at any time. I have so many triggers that sets of my EDS and autonomic dysfunction it is impossible to leave the house without experiencing most of them if not all. I am extremely hypersensitive, especially to sound, light, smell, and pretty much all food. I can't even go from a seated position to standing without my heart rate reaching up to 190, that is an example of how bad my autonomic dysfunction is. The action of standing up is too much for me, so going out on a night out or even hanging out is a massive challenge for me. I am scared to make plans in case I can't commit to them, there have been times in the past where I have bailed out on plans last minute and that's not really the type of person that I want to be. I want to be reliable, and in some aspects I would really like to be normal.
I have lost so many 'friends' to this illness, it gives people the impression that I don't want to talk to you, or hang out and go on epic adventures. It gives you a snippet of a person that I really don't want to associate myself with, because that is not who I am and I hate giving off the impression. There have been times where I said I couldn't go out on a night out for whatever reason and then be completely forgotten about for future occasions, which is quite upsetting as although I might have disabilities it doesn't mean that I don't want to go out and enjoy myself with my friends.
I have gotten so used to people walking out of my life, my friends and my father included, because I was too much of a liability or that my life and my struggle echoed that of a soap opera. I am not going to apologise to you, my life is what it is and if you can't handle me occasionally moaning about how much pain I am in and decide to end our friendship (yet feel the need to tell the world on social media you have the world's worst cold), then that's cool. You were obviously not worth another second of my time which is fantastic because I get to focus that wasted energy on my real friends.
One day, you'll get a glimpse of the real Alex, and I promise that you'll love her. Just hang in there for her, she is in there somewhere.
No comments:
Post a Comment