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Saturday, June 2, 2018

My Feet Are Sore From Kicking So Much AS

The Phrase Was Born

Over the course of the last two years since my diagnosis, I have researched,  started volunteering, raising awareness and trying to get fundraising projects started. That’s a fair amount of work for anyone, but for someone that is sick EVERY SINGLE DAY, it’s even harder work. As an advocate for my AS community I shouldn’t be taking sick days, I should be finding ways to assist, even when I’m having the worst days. I do, even if it’s laying in my bed making list of things to tackle next, and doing endless research online. During the beginning of my diagnosis I felt refreshed, validated, I was finally given an answer to the crap I had suffered through all those years. This led me to the conclusion that it takes a lot of strength to do what we do everyday. Each and every day it feels like I was just in a losing boxing match, and I definitely got my a** kicked. I was putting up a fight to get up and have a normal life, and Kick Some AS was born. It’s been my little slogan, my silent cheering squad encouraging me to keep going.

I firmly believe that as long as I don’t let AS win, then I still have control of my life. I have hiked mountains you wouldn’t believe just so I could look in the mirror and say “AS, You Hit Like A B*TCH”! If you follow my story then you know that for the past fourteen months, I have not been capable of hiking. That’s because this disease is seeking vengeance on me. It tried to knock me down and I just kept getting back up, so now it’s unleashed a wrath of hell it is raining down on me.

I Have Kicked AS And Then Kicked It More 

Time and time again I have stood back up, and pushed past every hurtle that’s been thrown at me. My body has grown tired of this fight. My batteries are running low, and there is no power source in sight. It hasn’t just been my health, it’s been raising kids, bad relationships, highly demanding jobs, over working because it’s so costly to live, caring for my children’s dying father, it’s always something, and it’s just physically and mentally draining. I am far to independent to let others help me out, and far to prideful to publicly face the bad crap I have been through. Being independent is great, until you Just physically can’t do something on your own anymore. Being independent and sick, it’s like a cruel joke. You can’t do things, but doing it yourself is all you want. You get viewed as lazy. People don’t understand how badly you want to do things, but doing them takes every ounce of energy you have that day.

In many cases, like me there really isn’t anyone to help, so things either don’t get done, or you suffer through doing them and regret it later when you can’t enjoy something else. Say like me you are lucky enough to have someone willing to help if you ask, that great right? No, not really. Why? Well, because now that I’m watching them do it, I’m only fully reminded of how much AS has affected me. I feel like a burden, and I’m just that much more depressed that I can’t do the stupid thing by myself to begin with. Let’s say you have someone that tries to do so much for you and would do anything for you, that’s great too, right? No, it’s not! When someone just tries to do things for you without knowing for sure if you need the help, we’ll, then you feel like you are viewed as disabled, they think you can’t do it. It’s great when that fine balance of help is there. It’s just tricky to achieve. If you do things without asking, you are going to add to the problem. If you don’t do things without being asked, you are going to add to the problem. I Know! Now you are thinking, well that’s just impossible, we can’t please you no matter what we do. That’s not true though. Don’t just do things, let us attempt to do them first. If we are not successful we may not ask for help, because this makes it so much more real to us that our disease is causing a disability. So ask us, “Is there anything I can help you with?” Don’t be surprised if we say no, because we might.

It’s Not Easy Being Sick

It is not easy being sick, so there is no easy solution. We can’t just do what you think we should, because that may not be the best thing for us. As much as you want to offer advice and opinions, telling us how this diet made you feel better, and maybe we just need counseling is not going to make us feel any better. The best thing you can do is refrain from giving us personal advice on how to feel better. Don’t judge us for being sick, because unless you are living with a chronic disease or life long illness, then you have no idea what it is like to be sick everyday. Don’t compare my back pain to yours, don’t suggest I must be fine because of my age, how I look or what I did that day. My good days are not always when I am out and active and doing all the things I want or need to do. Those days can be bad days too, even if I look really good that day. I occasionally put on make up just because I feel so bad, that at least I can look pretty in the process. I like to keep my hair colored as well, because it at least makes me feel pretty.

There are times while I’m out shopping, or doing other activities that I have to stop, and times that I just rush through it because I’m getting so sick and I need to sit down and be done. When I say I’m getting sick, I don’t mean I am vomiting or anything like that. Although, that does occur. When I talk about being sick, I typically mean pain increases, swelling starts, heart rate goes up, and oxygen levels drop. I mean that I can’t tolerate how I am physically feeling any longer and I just need to be done for the day. I mean that if I don’t stop, I might collapse. At any given moment I could go from feeling okay to feeling like it’s my worst day yet. When I say I’m feeling okay, do not mistake that for feeling good, or not having any pain. That is the farthest from the truth. If I am feeling okay, I am just capable of tolerating the symptoms and the level they are at during the moment. If I say I’m feeling good, take that with a grain of salt, because I could easily go from thinking I got lucky and have a surplus of energy and tolerance for the day, to being bottomed out and headed to urgent care moments later. If I say I’m feeling great, be happy for me, because this is a rare occurrence. Also, don’t forget it won’t last.

I’m Tired Of Kicking AS

I’m tired, I’m defeated, I’m not suicidal, let me just get that out there. I am just completely and totally burned out of trying to not be sick. I have worked in healthcare for a long time, and I have always wondered how people can just be ready for their fight to be over, how you can feel okay saying you are ready to leave all your loved ones behind. Now, I think I have an idea. I’m not ready to go, in fact I am terrified of the idea of leaving my loved ones behind. With that being said, I’m also ready to be through fitting. I’m tired of battling pain everyday. I’m tired of losing more and more of what I believe makes me who I am. I’m tired of not being able to breath, sleep, eat, do anything. I can’t even take a shower without getting so short of breath that I need to rest before putting on my clothes.my body doesn’t move like it should. I can barely get my hands around to snap my bra, I can’t find an easy way to reach my shoe laces. I can’t open a bottle of water, if I stand to long it hurts, if I sit to long it hurts, if I move the wrong way it hurts. I have lost so much, but feeling this constant smothering feeling, like a 400lb man is sitting on me, feeling weak, dizzy and like the air is just being sucked out of my body, that is a feeling I don’t have the power to overcome.

I’m sure you probably think I’m exaggerating. I wish I was. I feel like the life is being drained from my body and I’m just trying to figure out how to come to terms with that. Becoming fully disabled and dependent on someone else, I might as well be dead. That’s no life. Bed bound, unable to care for yourself or participate in life. I have dreams and goals, and none of them can be achieved from the bed. I don’t want my kids having to take care of me, or my family. What if that’s what I get, well then so be it, I will just have to get over it. If that’s what I get, I’ll be ready to stop fighting, I’ll be ready to go and leave others to live their lives. It’s scary as hell thinking about it, but it’s hard not to when you physically feel your health declining by the day. It seems unreal how much things can change in just a matter of days, or a month, or a year. It’s hard to think about any of this, but in the end I know it’s all going to be okay. In the end, the pain will be gone and I’ll suffer no more.

Share my story, tell the world, AS tries to rob you of your life, so join the fight to help me and everyone else like me #KickSomeAS 

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