Tuesday, February 9, 2016
It is weird but that is just life
I appreciate those who ask me about my health. Maybe not frequently, that can get annoying. But if I haven't seen someone in awhile and they ask me about my health, I appreciate it. It makes me feel like they truly care about me and my sanity. It is hard living with something that feels like it is sort of slowly taking over your life. No matter how hard I try to take care of myself and control my symptoms. Last week, I met with one of my advisors/professors and she ask me almost immediately how my health was. I was like thinking to myself, "ok. That was fast. Let's just get this over with. I guess." I found it odd. Then I felt like I wasn't alone and professors actually care. Even though, I don't know why they truly do care. Honestly, every time I have a conversation with someone I will be wondering when they will ask me and how they will react what I will say. It is weird. But that is just my life now. I guess. I can't control those thoughts.
Dear (insert how I know you here),
I write this to explain myself and why I do the things I do and how this illness has changed my life.
Walking: Wow, you noticed I walk slower. Thanks (sarcasm, if you didn't notice). Yes, I walk slow, sometimes. If I am walking slower it is because my legs feel really weak. My legs can feel so weak sometimes that I feel like they are just going to give out. I also walk slower because I get really bad cramps and muscle spasms in my feet, legs, and hips. I also get joint pain in my hips and knees. Yes, that is POTS. I have already been tested for everything else. POTS is a weird disorder than affects pretty much everything. I can also be walking slower because I could be feeling dizzy, off-balance, or lightheaded.The last reason, is because if I walk to fast it can cause dizziness, lightheartedness, off-balance, and shortness of breath. Thanks for pointing out how slow I walk it makes me feel great. Not really, I hate it. I like it when a person asks me if I am ok, because they notice this. If you ask me how I am doing, that means that I probably didn't even notice how bad I am doing. It has happened before.
Stairs: One of my worst enemies, is the stairs. I usually have weak legs or just weak everything and that is one of the reasons I avoid the stairs. I also avoid them because I get dizzy, lightheaded, out of breath, and tachycardia when I take the stairs. The worst part about the stairs is that they can cause a flare-up for me. And those are really bad. I don't want that, nobody wants that. But sometimes I feel compelled to take the stairs to strengthen my legs.
Quietness: You noticed that I am quiet. Ok, yeah I probably feel like shit. I am probably in the middle of a flare-up and don't even want to tell anyone. I will probably leave to "go to the bathroom" is what I will tell you, but actually I am going to go try to catch my breath, cry a little, and tell myself that I can handle this in public, when I really can't and need to go lay down somewhere. Another reason I am quiet is because I am tired as fuck, like seriously this fatigue and physical exhaustion is terrible. It gets worse by the day.
Deep Breaths: You noticed that I am taking deep breaths otherwise known as sighs. Yeah, I am actually not feeling well and trying to catch my breath and normalize my heart rate and my sympathetic nervous system that is freaking out this very second. Or I just got done walking a long distance or up the stairs and I am actually trying to catch my breath, not because I am out of shape but because my autonomic nervous system is not working properly and is never working properly so it affects my breathing.
"Bathroom breaks/leaving the room at all:" A lot of the time when I say I am going to go to the bathroom, it actually means I am going to use the bathroom for its intended purposes of using the toilet. And I do use the bathroom a lot because of how much water I am supposed to drink. Another part of POTS is that my body doesn't retain water like it is supposed, therefore, I have to pee a lot. But sometimes if I am leaving the room it will be because I am having a flare-up and need to "group myself" which means I need to take deep breaths, sit down, and lie to myself by saying "you will get through this just like all the other times."
It is ok to ask if I am not feeling well. I will be honest. And honestly I probably won't be feeling well because that is how my POTS has been lately. It hasn't been treating me well.
Walking: Wow, you noticed I walk slower. Thanks (sarcasm, if you didn't notice). Yes, I walk slow, sometimes. If I am walking slower it is because my legs feel really weak. My legs can feel so weak sometimes that I feel like they are just going to give out. I also walk slower because I get really bad cramps and muscle spasms in my feet, legs, and hips. I also get joint pain in my hips and knees. Yes, that is POTS. I have already been tested for everything else. POTS is a weird disorder than affects pretty much everything. I can also be walking slower because I could be feeling dizzy, off-balance, or lightheaded.The last reason, is because if I walk to fast it can cause dizziness, lightheartedness, off-balance, and shortness of breath. Thanks for pointing out how slow I walk it makes me feel great. Not really, I hate it. I like it when a person asks me if I am ok, because they notice this. If you ask me how I am doing, that means that I probably didn't even notice how bad I am doing. It has happened before.
Stairs: One of my worst enemies, is the stairs. I usually have weak legs or just weak everything and that is one of the reasons I avoid the stairs. I also avoid them because I get dizzy, lightheaded, out of breath, and tachycardia when I take the stairs. The worst part about the stairs is that they can cause a flare-up for me. And those are really bad. I don't want that, nobody wants that. But sometimes I feel compelled to take the stairs to strengthen my legs.
Quietness: You noticed that I am quiet. Ok, yeah I probably feel like shit. I am probably in the middle of a flare-up and don't even want to tell anyone. I will probably leave to "go to the bathroom" is what I will tell you, but actually I am going to go try to catch my breath, cry a little, and tell myself that I can handle this in public, when I really can't and need to go lay down somewhere. Another reason I am quiet is because I am tired as fuck, like seriously this fatigue and physical exhaustion is terrible. It gets worse by the day.
Deep Breaths: You noticed that I am taking deep breaths otherwise known as sighs. Yeah, I am actually not feeling well and trying to catch my breath and normalize my heart rate and my sympathetic nervous system that is freaking out this very second. Or I just got done walking a long distance or up the stairs and I am actually trying to catch my breath, not because I am out of shape but because my autonomic nervous system is not working properly and is never working properly so it affects my breathing.
"Bathroom breaks/leaving the room at all:" A lot of the time when I say I am going to go to the bathroom, it actually means I am going to use the bathroom for its intended purposes of using the toilet. And I do use the bathroom a lot because of how much water I am supposed to drink. Another part of POTS is that my body doesn't retain water like it is supposed, therefore, I have to pee a lot. But sometimes if I am leaving the room it will be because I am having a flare-up and need to "group myself" which means I need to take deep breaths, sit down, and lie to myself by saying "you will get through this just like all the other times."
It is ok to ask if I am not feeling well. I will be honest. And honestly I probably won't be feeling well because that is how my POTS has been lately. It hasn't been treating me well.
Sunday, February 7, 2016
My battles...my hope
There are days when I question whether or not I can put up with my body's pain and the way it malfunctions on me. I am all alone, staring at a blinking cursor thinking to myself why do I keep fighting? And I get another pain but this time it disfigures the shape of my foot. It isn't supposed to look or feel like that. I try to "walk it off" but that just makes it worse. It won't go back to normal. Not only won't the pain go away but the disfigured foot just keeps staring back at me and I fall to the ground and sob. I sob like a fighter who has had enough. But this is just another battle. This illness is mine and only mine. I am the only person that will battle it, day-in and day-out. And when the pain finally goes away and my foot goes back to normalcy, I find myself still sobbing and still asking why? Then I remember laughter. I remember the joy of my family and friends. And the excitement of feeling so proud of my little brother and his career in wrestling and how I got to watch him win a medal. I got to see him smile that big beautiful, hopeful smile, with his medal close to his strong healthy beating heart. I have the privilege to look at my mothers elegant smile and remember the support and love that she has given me since the day I was born. Even when I am feeling so alone and frightened for the future. I still have hope. There smiles give me hope and that is all that I need. It is hope.
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