If I could describe my sickness in one word, it’d be torture. This is going to be a very blunt post so if you get sad easily, I would suggest going to another one of my posts! Imagine sitting there feeling like death, waiting to die but you don’t die. You just feel like that and just live like that forever. Imagine you are just standing still and watching your friends, peers, enemies, the world passing you by. They are going to college, going out, getting jobs, starting families and you are just sitting at home wondering if you’re going to get a break from feeling like garbage. That’s what I feel like every day.
Of course, no one knows this because I try to put on a brave face, make sure the ones around me don’t feel sad looking at me. I don’t have an illness that kills me but it likes to trick me into thinking I am in danger. So I always think I am. Because I have over 30 symptoms, I have symptoms that mimic strokes and heart attacks and other deadly things. I always have the worst anxiety that does not help with the symptoms.
Basically, my condition is a mind F. It makes you feel the scariest symptoms that make you wonder how is it possible to feel this and not die? I have a lot of symptoms a lot of people with the similar condition don’t have. I already have a rare condition but its also rare that I am as sick as I am.
Dysautonomia is basically a dysfunction of the automatic nervous system. Basically, my nervous system is a moron that can’t get it together. I think that’s how they describe it in the doctors’ offices, right? Your nervous system controls almost everything in your body from your heart rate to your bladder. I would personally describe Dysautonomia as a mix between chronic fatigue syndrome and M.S (multiple sclerosis.) It is also an invisible illness because on the outside we look so normal but on the inside, it’s hell in there.
Oh boy, do you have all day? Just kidding. I won’t bore you but I’ll try to get to the basics. There’s my guy Chronic fatigue, I am ALWAYS tired. Fatigue became a part of my vocabulary when I was 14. What 14 year old knows what fatigue is? Only the ones with 85-year-old bodies. There’s never an amount of sleep or a day that goes by where I am not tired. I know a lot of people walk around and complain about being tired which I have no doubt in my mind you are! But fatigue is a kind of tired that makes you exhausted at the thought of even stepping foot out the door.
I struggle with weakness where someone will have to carry me. I have a certain amount of energy throughout the day and if I use too much of it on one activity, that’s it. My legs and body shut down for the night, and they become like Jell-O. Its actually pretty funny and I’m more like a chronically sloppy drunk girl. Because once my body shuts down do you know what also shuts down? My cognitive ability. I slur my words and can’t think straight. It can get frustrating because I will feel too sick to get to the bathroom or I have to give up doing something so I can get something else done that day.
The mood swings can be agitating but luckily I don’t stay in a certain mood for long periods of time! I will be angry, yell, make a brutal joke and then laugh at my joke. So it’s an interesting roller coaster. The worst symptoms have to be passing out, low blood pressure, racing heart, anxiety, random panic, numbness anywhere especially the chest, dizziness, light headed, snow vision, chest pain, and blurred vision just to name a few.
There is not a moment that goes by that I don’t feel sick or can get some type of relief. Medicine doesn’t help me, it makes me sicker because I am so sensitive to everything. It band-aids the problem, it doesn’t fix it. When most healthy people get the symptoms I get, they go to the hospital and they find some type of relief. I can’t go to the hospital because the can’t do anything for me. The scariest part is having symptoms and not knowing if it’s my sickness or I’m actually in danger. That’s why dysautonomia messes so bad with your mind. It’s pure torment. Is this symptoms dangerous? Is it my normal sickness?
New symptoms constantly pop up and you can never tell the difference. I’m tired and sick and want to lay down but if I lay down I’ll feel my symptoms way more than if I am distracted. Mind over matter is how I live my life. I may be weak but if I mentally push myself, it will physically push me. A lot of time is spent alone trying to accept that I may die and have no clue. But I am terrified of death so I panic.
Because I have so many symptoms and I can’t walk more than down a driveway without getting really sick, I am pretty homebound. I don’t talk about it a lot because my sickness doesn’t define me, its a part of me and makes my life difficult but it isn’t me. People go to stores for me because I am too sick to do it myself, I have to find rides to doctors appointments. If I choose to do something (which is rare) like going to a wedding or my sisters play, it takes me about three days to recover and someone always winds up carrying me to the car or carries me to whatever that’s longer than a driveway walking distance. I do have a wheel chair but I am still trying to get used to trying to use it.
My cognitive fog is so bad, I have a hard time making sense sometimes or getting out what I mean to say. I will say one thing but mean something completely different. Remembering words is hard! Remembering a lot of things is hard, I have really bad short-term memory loss. Wait what were we taking about again? Kidding. Reading and comprehending things is exhausting and that is one of the reasons I couldn’t even do college online.
Being isolated from the world, especially being an extrovert is a big struggle. It’s hard seeing people because I overwork myself from excitement that I crash. I’m pretty much a puppy. Basically every single thing I do has to be thought out. I have a limited amount of energy per day and if I use it up doing one thing, I can’t do anything else the rest of the day and possibly not the next day either. It can be awkward because people just don’t understand especially since I look so normal.
I do suffer a lot, but I also have a lot to be grateful for. I have a healthy heart and organs, a couple good people in my life, a sense of humor, a mouth I can talk out of ( I don’t know if that’s actually a good thing), two arms and two legs. It’s the things I am grateful for that remind me to keep it together. I have learned so many life lessons people go through their whole life never learning. I can help people get through things since I have experienced myself. Still, I am always learning and a work in progress.
If you are sick just remember it is a blessing and it is a curse. It’s a blessing because it reminds us of the little things to be grateful for and it helps us find genuine people that will stick by us no matter what. I feel bad for healthy people because it’s harder to detect who will have their back no matter what. But with us sick people, nah we already have so many problems that if someone sticks by us, they really love us and we know it. Or they are mental and have Munchausen that disease where they like making people sick and taking care of them.
Don’t feel bad if people do leave your side while going through a hard time. Sometimes people can’t handle it and that’s okay. Not everyone is cut out for the sick people life. That’s their own personal problem, not yours. I know being sick is a struggle and it is one of the hardest things you’ll ever deal with. Having health issues is top 3 worst things that can happen to you. So I mean you won top 3 of something! You can get through it with a good support system, good doctors and a good sense of humor.
If you enjoyed this post and would like more let me know in the comments below! Or anything else you would like to share! Do you have a chronic illness or no someone with one? What is your experience like?
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