Tired of being tired and tired of being alone and tired of not having any income and tired of how long it's taking to get short term disability approved. Leading to despair that I'll never be able to work again and despair that I'll not have the financial ability to cover my expenses and despair that I'll end up on the street with my cats. Looking at the reality that I may need to give up my cats who currently are the only living beings with whom I have daily interaction. Feeling like maybe I haven't earned the right to have anyone care because I have nothing to offer because I serve no purpose because I can't stand for more than a few minutes at a time and I'm constantly, chronically fatigued by doing nothing.
Sorry, too many years of being told I'm fainting to get attention has me questioning if I'm just giving in to feeling faint instead of motoring through like I should, like I have to because no one else will take care of me if I don't. So if I lose my current job, who else will hire me if I faint or if they do and I faint repeatedly, will I just lose my job again and again? And what about insurance? What about a car, what's the point in having one if I can't drive very far any way?
Healthcare is another thing. NCS isn't my only malady. I'm diabetic, too. NCS is incurable, just a life long pain in the ass because medication doesn't work for me and while my heart and my brain don't communicate with each other, it's not technically an issue of my heart being broken because my fainting has more to do with low blood pressure. Diabetes is likely incurable, too because it runs on both sides of my family and we eat healthy or in my case, as healthy as I can on a limited budget.
I'm having difficulty finding the positive right now. I can't drop out because I would go insane without human contact. I'm practically there anyway, and if this is all about me getting attention, clearly, I have a mental defect so maybe I already am insane. I'm tired. I'm not thinking straight. I have to figure out how to spin gold from straw so I can cover my expenses in case my short term disability isn't approved or I am unable to have a paying job. I need to save my strength and brain cells for that.
Friday, September 20, 2013
Tuesday, September 10, 2013
Normal?
So I discovered a new parlor trick relating to my NCS. I am highly symptomatic today due to the heat and humidity and possibly PMS. When I went to the kitchen to figure out lunch, I got dizzy and had to sit down. I noticed that my feet were red. I pushed down on the skin and that spot went white as the blood was displaced. I thought to myself, "Well, this definitely proves that whole 'blood pooling in the feet' thing." I put my feet up on the cupboard door and my feet looked normal again. So I reached down and pushed down on the skin again, but there wasn't a lot of blood to be displaced so no color changes.
I wish I could say that was fun, but it's not fun and it's not a trick I want to be able to do. I was talking to my friend, Dawn yesterday and I told her, "I just want to be normal again." And she laughed and asked, "Normal? You?" I had to laugh. Some people will say that normal is only a 98.6 temperature on a thermometer. I would have to retort with that's not normal for me. Indeed, it isn't. My normal body temperature is 97.9. So my normal isn't the average normal.
The more I've been looking into NCS, the more I'm discovering that my below normal actually is normal for my condition. The few support groups I've joined, the more I'm finding that I am normal among a chosen few, and none of us asked to be this kind of normal.
It has been said to me that I live crisis to crisis with this condition. It was meant as an indictment, and I can be convicted of the accusation because when I feel good, I can do so much, but when I feel lousy, it becomes a crisis. My blood pressure drops. I get sleepy. I can't focus or concentrate. My speech gets slurred. It's a mini crisis and I can usually handle it by laying down and propping my feet up. Within an hour or two, I'm back to whatever normal is for me. But as I'm getting older, my response time is slowing down dramatically. Technically, I'm still trying to recover from fainting on July 16, which was over 1300 hours ago. This is officially the slowest response time I've ever had.
As time is going by, I'm trying to weigh what's going on in my environment against how my body is responding to it. Heat, humidity, hormones: check, check and check. Cooler days, still not feeling good or whatever my normal is. Diabetes, blood sugar is getting high again. May need to adjust meds or may need to switch from oral to insulin. Had my doctor do blood work to check my estrogen levels and they are within normal range for a woman of my age. Now I am beginning to question if this ickiness is my new normal.
New normal. It happens all the time. Paradigms shift. As new information is uncovered a new normal takes the place of the old normal. Galileo got excommunicated when he informed the world that Earth was not the center of the universe. It took the Vatican years to accept this new normal that to everyone reading this is the normal.
Nobody likes change. I sure as hell don't. I also don't like the changes occurring with my body. I don't like the new adversarial role it has taken in relation to my life. And I don't like the possibility that I may have to accept a new normal because I fear it is going to make me dependent on family or friends. For many of my fainting episodes that garnered me a trip to a local ER, I would call a cab to take me back to work so I could get my car and drive myself home. My co-workers questioned why I would do that when I have family in the area. I do tend to lean heavily on my family because there's a tighter bond there than there is with any of my friends, and let me tell you, I have some awesome friends.
One of my very dear friends has cancer and Sarcoidosis. She's been fighting the since 2009 and it's still an uphill battle, but she's able to drive her kids around and she's able to be involved in her church. Still, when something changes to her status quo and she needs to be hospitalized or she catches a cold, she needs to lean heavily on her support network of friends. She was lamenting one day that after four years, people expect her to be cured or to be at death's door and because she's neither, she feels like they're getting weary of helping her. Thankfully, my illness is nowhere near as severe as hers is, but I have been dealing with it for 31 years and people seem to expect me to be cured or be at death's door. I am neither and don't expect to be either for many years.
Medical science is still trying to get a handle on the treatment of NCS. So many people have so many triggers. For some, medication can help to alleviate symptoms and for others, a pacemaker helps to keep their heart rate high enough for them to function, for others, it's learning to not stress out about external factors that cause them to faint such as when they have blood drawn or when they see a needle or when they experience a traumatic event. Medication no longer works for me. My heart rate is within acceptable range for a woman of my age. I have never fainted when my blood is drawn or when I see a needle. Last year: I hurt my back at the end of January, my aunt died February 4, 2012, I flew to Tampa for her funeral after driving myself to the airport (and getting lost on the way), I was in my final semester of college, my mom died February 14, 2012 (and I was at her bedside along with some of her other children and grandchildren), and my cat died on February, 18, 2012. During those three weeks of high drama, I did not faint once.
So if my new normal is feeling fatigued over doing next to nothing. If it's chronic dizziness and feeling faint, I'll have to find a way to adjust so I can continue to care for myself. Maybe my job will allow me to recline at my desk so I can keep my feet up as much as possible. And if that new normal is eclipsed by another new normal, I'll have to adjust again. And I'll be grouchy about it and the process will be slow, but I'll get it done.
I wish I could say that was fun, but it's not fun and it's not a trick I want to be able to do. I was talking to my friend, Dawn yesterday and I told her, "I just want to be normal again." And she laughed and asked, "Normal? You?" I had to laugh. Some people will say that normal is only a 98.6 temperature on a thermometer. I would have to retort with that's not normal for me. Indeed, it isn't. My normal body temperature is 97.9. So my normal isn't the average normal.
The more I've been looking into NCS, the more I'm discovering that my below normal actually is normal for my condition. The few support groups I've joined, the more I'm finding that I am normal among a chosen few, and none of us asked to be this kind of normal.
It has been said to me that I live crisis to crisis with this condition. It was meant as an indictment, and I can be convicted of the accusation because when I feel good, I can do so much, but when I feel lousy, it becomes a crisis. My blood pressure drops. I get sleepy. I can't focus or concentrate. My speech gets slurred. It's a mini crisis and I can usually handle it by laying down and propping my feet up. Within an hour or two, I'm back to whatever normal is for me. But as I'm getting older, my response time is slowing down dramatically. Technically, I'm still trying to recover from fainting on July 16, which was over 1300 hours ago. This is officially the slowest response time I've ever had.
As time is going by, I'm trying to weigh what's going on in my environment against how my body is responding to it. Heat, humidity, hormones: check, check and check. Cooler days, still not feeling good or whatever my normal is. Diabetes, blood sugar is getting high again. May need to adjust meds or may need to switch from oral to insulin. Had my doctor do blood work to check my estrogen levels and they are within normal range for a woman of my age. Now I am beginning to question if this ickiness is my new normal.
New normal. It happens all the time. Paradigms shift. As new information is uncovered a new normal takes the place of the old normal. Galileo got excommunicated when he informed the world that Earth was not the center of the universe. It took the Vatican years to accept this new normal that to everyone reading this is the normal.
Nobody likes change. I sure as hell don't. I also don't like the changes occurring with my body. I don't like the new adversarial role it has taken in relation to my life. And I don't like the possibility that I may have to accept a new normal because I fear it is going to make me dependent on family or friends. For many of my fainting episodes that garnered me a trip to a local ER, I would call a cab to take me back to work so I could get my car and drive myself home. My co-workers questioned why I would do that when I have family in the area. I do tend to lean heavily on my family because there's a tighter bond there than there is with any of my friends, and let me tell you, I have some awesome friends.
One of my very dear friends has cancer and Sarcoidosis. She's been fighting the since 2009 and it's still an uphill battle, but she's able to drive her kids around and she's able to be involved in her church. Still, when something changes to her status quo and she needs to be hospitalized or she catches a cold, she needs to lean heavily on her support network of friends. She was lamenting one day that after four years, people expect her to be cured or to be at death's door and because she's neither, she feels like they're getting weary of helping her. Thankfully, my illness is nowhere near as severe as hers is, but I have been dealing with it for 31 years and people seem to expect me to be cured or be at death's door. I am neither and don't expect to be either for many years.
Medical science is still trying to get a handle on the treatment of NCS. So many people have so many triggers. For some, medication can help to alleviate symptoms and for others, a pacemaker helps to keep their heart rate high enough for them to function, for others, it's learning to not stress out about external factors that cause them to faint such as when they have blood drawn or when they see a needle or when they experience a traumatic event. Medication no longer works for me. My heart rate is within acceptable range for a woman of my age. I have never fainted when my blood is drawn or when I see a needle. Last year: I hurt my back at the end of January, my aunt died February 4, 2012, I flew to Tampa for her funeral after driving myself to the airport (and getting lost on the way), I was in my final semester of college, my mom died February 14, 2012 (and I was at her bedside along with some of her other children and grandchildren), and my cat died on February, 18, 2012. During those three weeks of high drama, I did not faint once.
So if my new normal is feeling fatigued over doing next to nothing. If it's chronic dizziness and feeling faint, I'll have to find a way to adjust so I can continue to care for myself. Maybe my job will allow me to recline at my desk so I can keep my feet up as much as possible. And if that new normal is eclipsed by another new normal, I'll have to adjust again. And I'll be grouchy about it and the process will be slow, but I'll get it done.
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