As most of you know, I used to be a pretty intense runner, and track and field star. That is before I got colitis, celiac, fibromyalgia, endometriosis, PCOS, EDS hypermobility, and Dysautonomia that is. You may not know that part of the reason it took me so long to get diagnosed is because I was still intensely running (between 2 and 10 miles a day) and passing out daily because I didn't want to admit I couldn't run anymore and it confused my doctors.
You also probably don't know that every single morning the first thing I do before I move is look out the window and decide if it would be a good day for a run. I haven't been able to run, let alone walk around the block, since October 2012, yet I still do this EVERY SINGLE MORNING. Then every single morning, after I make my decision I quickly realize that it makes no difference if it's a good day for a run or not because I am so stiff I can't move, once I do move and stand up I black out from the blood pressure change, the bottom of my feet burn and hurt so bad from the pressure of standing on them, I'm nauseous and dizzy, I get sweaty and clammy, and that's just my symptoms from walking to the bathroom. Then I quickly realize that even if it's a great day for a run, I ain't going on one anytime soon. And then I cry, every single morning.
See what people who don't have a chronic illness don't realize is that those of us with chronic illnesses have to grieve our past life every day. We aren't missing an arm or leg, we aren't dying anytime soon, we look normal to you, but we aren't normal. So when we wake up in the morning for a split second we (read I) think that there is nothing wrong with me, until I try to move. Then I have to go through the grieving process all over again.
Here is another thing you may not realize. Summer is really hard for those of us with chronic illnesses, especially those of us who are young with chronic illnesses. While you (regardless of age) are planning your vacation, cookouts, pool parties, etc. We are planning our out of town doctor's appointments, our weekly saline infusions, how to make as many trips in one because we can't be in the car for very long because of the heat (because we don't thermoregulate), and which rerun we are gonna watch today. We don't get to go to a lot of the fun stuff, and if we do get invited to something (because a lot of people simply stop inviting us) we often feel obligated to go and overdo it and are down for a week or more.
You don't realize how when you're judging us based on the things we do and then say that we don't feel good that we probably really haven't felt good at all the whole time, but we wanted to do something for an hour today because contrary to popular belief laying on the couch every day for the rest of your life isn't fun. It's really annoying. Sure, you would love to lay around for a couple of days since you "have to go to work every day" but I bet after 3 or 4 days you would go absolutely insane. That brings me to another point. I don't want to be on disability for the rest of my life, I will likely need to, but I don't want to. I am 27, I had a job I loved, of course I want to go to work every day and be normal and make more than 700 dollars a month...yeah that's what I live on...
You don't realize that we miss our old life so doing small things are huge for us. Being able to go get coffee with my dog every day is HUGE for me, it is my sanity, my independence. When I'm driving the 20 minutes (10 minutes each way) to the coffee shop I think about my old life. I think about my family in North Carolina, I think about my kids that I taught and played basketball with, I think about my track team that I coached, I think about all the jobs I had at various places, I think about autism camp, I think about camp, I think about music and all the places I played and all the instruments I played, I think about running, I think about track meets, I think about sitting on the beach, I think about hiking.
When I'm home laying in bed, I think about smaller things that I would kill to be able to do from my old life. I think about being able to stand up to wash the dishes in the sink, I think about being able to stand up to take a shower, I think about being able to do the laundry without pain and tachycardia, I think about shaving my legs, I think about being able to go grocery shopping, I think about being able to go in a mall to shop for things instead of having to do the majority of my shopping online, I think about being able to go to school and do homework without any physical or mental repercussions, I think about being able to remember that the garbage disposal is broken before I put food down it....again....and have to dig it out....again.
My point to this endless rambling of words is that being chronically ill sucks. People who aren't chronically ill seem to think we are living the life of king's over here and those of us that are chronically ill would do anything to be living your life, just for one day again. We are tired of grieving for our old life every single day. We are tired of putting on faces for the world, and when asked the question "How are you?" automatically answering "I'm fine" because no one wants the real answer. Most of us, when asked the question how do we feel compared to a typical (normal) person scale don't even know how to answer the question because we don't remember what normal feels like. That is besides the first 3 minutes of the day, when you open your eyes, look out the window, see the sun hitting the trees at just the perfect angle, you can almost feel the 65 degree sun on your face and you realize it's a perfect day for a run, until your feet hit the floor and you grieve your life again...until tomorrow...
You also probably don't know that every single morning the first thing I do before I move is look out the window and decide if it would be a good day for a run. I haven't been able to run, let alone walk around the block, since October 2012, yet I still do this EVERY SINGLE MORNING. Then every single morning, after I make my decision I quickly realize that it makes no difference if it's a good day for a run or not because I am so stiff I can't move, once I do move and stand up I black out from the blood pressure change, the bottom of my feet burn and hurt so bad from the pressure of standing on them, I'm nauseous and dizzy, I get sweaty and clammy, and that's just my symptoms from walking to the bathroom. Then I quickly realize that even if it's a great day for a run, I ain't going on one anytime soon. And then I cry, every single morning.
See what people who don't have a chronic illness don't realize is that those of us with chronic illnesses have to grieve our past life every day. We aren't missing an arm or leg, we aren't dying anytime soon, we look normal to you, but we aren't normal. So when we wake up in the morning for a split second we (read I) think that there is nothing wrong with me, until I try to move. Then I have to go through the grieving process all over again.
Here is another thing you may not realize. Summer is really hard for those of us with chronic illnesses, especially those of us who are young with chronic illnesses. While you (regardless of age) are planning your vacation, cookouts, pool parties, etc. We are planning our out of town doctor's appointments, our weekly saline infusions, how to make as many trips in one because we can't be in the car for very long because of the heat (because we don't thermoregulate), and which rerun we are gonna watch today. We don't get to go to a lot of the fun stuff, and if we do get invited to something (because a lot of people simply stop inviting us) we often feel obligated to go and overdo it and are down for a week or more.
You don't realize how when you're judging us based on the things we do and then say that we don't feel good that we probably really haven't felt good at all the whole time, but we wanted to do something for an hour today because contrary to popular belief laying on the couch every day for the rest of your life isn't fun. It's really annoying. Sure, you would love to lay around for a couple of days since you "have to go to work every day" but I bet after 3 or 4 days you would go absolutely insane. That brings me to another point. I don't want to be on disability for the rest of my life, I will likely need to, but I don't want to. I am 27, I had a job I loved, of course I want to go to work every day and be normal and make more than 700 dollars a month...yeah that's what I live on...
You don't realize that we miss our old life so doing small things are huge for us. Being able to go get coffee with my dog every day is HUGE for me, it is my sanity, my independence. When I'm driving the 20 minutes (10 minutes each way) to the coffee shop I think about my old life. I think about my family in North Carolina, I think about my kids that I taught and played basketball with, I think about my track team that I coached, I think about all the jobs I had at various places, I think about autism camp, I think about camp, I think about music and all the places I played and all the instruments I played, I think about running, I think about track meets, I think about sitting on the beach, I think about hiking.
When I'm home laying in bed, I think about smaller things that I would kill to be able to do from my old life. I think about being able to stand up to wash the dishes in the sink, I think about being able to stand up to take a shower, I think about being able to do the laundry without pain and tachycardia, I think about shaving my legs, I think about being able to go grocery shopping, I think about being able to go in a mall to shop for things instead of having to do the majority of my shopping online, I think about being able to go to school and do homework without any physical or mental repercussions, I think about being able to remember that the garbage disposal is broken before I put food down it....again....and have to dig it out....again.
My point to this endless rambling of words is that being chronically ill sucks. People who aren't chronically ill seem to think we are living the life of king's over here and those of us that are chronically ill would do anything to be living your life, just for one day again. We are tired of grieving for our old life every single day. We are tired of putting on faces for the world, and when asked the question "How are you?" automatically answering "I'm fine" because no one wants the real answer. Most of us, when asked the question how do we feel compared to a typical (normal) person scale don't even know how to answer the question because we don't remember what normal feels like. That is besides the first 3 minutes of the day, when you open your eyes, look out the window, see the sun hitting the trees at just the perfect angle, you can almost feel the 65 degree sun on your face and you realize it's a perfect day for a run, until your feet hit the floor and you grieve your life again...until tomorrow...
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