I hate nights where you can't sleep, and then you end up freaking out over everything in your life.
The heat in the apartment building I'm in has been making me seriously ill for months. It keeps triggering my POTS and then I get faint, weak, dizzy and lightheaded. By law, they have to put it on in Oct and ever since, that has been the end of me. I've tried keeping the windows open, but there isn't much breeze. And I've been reluctant to use the air conditioner because I'm scared of how much I'll be charged. I cannot afford to breathe, literally. No money. But tonight, I caved in and put it on for two hours, and there was such a huge difference in how I felt physically. I was so much better. It made a huge difference.
I'm going to have to start looking at the air conditioner as a lifesaving medical device at this point. And even if it's just a few hours a day, put it on when I need it and pray I don't get charged too much for that. This building will NOT ever accommodate my illness. They couldn't even if they wanted to because the heat is individually controlled. So if someone below me puts it up, there's nothing anyone can do about it. The last place I was in, the heat barely worked and it was fine. But here, it's like a furnace all the time. And the weather has been too warm to justify having the heat blasting away.
POTS, for me is the most disabling part of this illness. The lightheadedness, the dizziness, weakness, feeling so faint that if I don't lay down I will black out. Feeling like I'm not getting enough oxygen to my brain and not enough blood pumping to my heart so I get the heart pain from it. There is nothing more disabling. If you don't lay down, you will fall down. And once that blood pressure has dropped, you are not getting up again until it somehow comes back up, which is usually twelve hours later or so. It's a life destroyer. Unpredictable, you cannot live with it at all. And that, more so than any of the other symptoms is why I'm disabled. But then you can add in the cognitive problems with memory and audio processing, and intense pain all over. Who could work with this.
The poverty is getting to me now. Especially around the holidays. Not being able to work. Not being able to socialize. No one is calling me anymore. All alone now. No real future prospects of doing anything at all since the disease is not leaving me. I can't go back to school, I can't join in any religious services, I can't go get a job. I can't even be in the same room with too many people for very long before the sensory overload starts to kill me.
I don't really understand why God keeps me alive at this point. Because everyday, I feel like I don't know how much longer I can do this. This is not a life. This a horrible solitary confinement without end. And I'm not even allowed to know what I did to deserve to be this way. Or is the answer that it was simply genetics and in the wrong place at the wrong time? The vaccines, the lyme, the whole toxic world we live in. Maybe we'll find out someday.
I had a life once. I had friends. My phone always rang. I had a real social life of travel and going out to dinner and bars and all kinds of things. I spent hours and hours at the gym that I loved. I had a best friend and dates and even almost got married at one point. Holidays were spent with friends and family. And that's all gone now. Everything is gone. Gone as if someone exploded a nuclear bomb, and I'm stuck living in the fallout. The nuclear winter that never ends. And someone is always waiting to harm me and say something nasty and kick me when I'm down. What kind of life is that? Who would want it? When you lose your ability to work, socialize, do much of anything at all and each day is spent on basic survival. Just praying you can make something to eat or make it to the bathroom and back. And if you're very lucky you might be able to get your mail or take out the garbage, only to get lightheaded and weak and sick and dizzy again and having to go lay down. This is one of the cruelest diseases out there.
People rally around cancer patients, they get tons of support and help. AIDS patients, many of them now, get real treatments that keep them going just fine. They still work, go to school, even have children. What do we get? Nothing. Those of us who have this severe, we are left in limbo, to watch our lives go nowhere with no help or support in site.
I'm just so tired of it. I'm tired of people not understanding because we don't look sick enough to them. I'm tired of being mistreated, misjudged and basically throw in the garbage.
And I get no credit for all that I have accomplished while sick. I hope the reward's in heaven on that.
So tonight I'm awake and alone and freaking out that I'm running out of everything and can't buy anything till my money's in at the end of the week.
Over twenty years of this. I don't really know what keeps me going anymore. I don't believe in a miracle cure. And I really don't know what's going to happen. I wish I did.
The heat in the apartment building I'm in has been making me seriously ill for months. It keeps triggering my POTS and then I get faint, weak, dizzy and lightheaded. By law, they have to put it on in Oct and ever since, that has been the end of me. I've tried keeping the windows open, but there isn't much breeze. And I've been reluctant to use the air conditioner because I'm scared of how much I'll be charged. I cannot afford to breathe, literally. No money. But tonight, I caved in and put it on for two hours, and there was such a huge difference in how I felt physically. I was so much better. It made a huge difference.
I'm going to have to start looking at the air conditioner as a lifesaving medical device at this point. And even if it's just a few hours a day, put it on when I need it and pray I don't get charged too much for that. This building will NOT ever accommodate my illness. They couldn't even if they wanted to because the heat is individually controlled. So if someone below me puts it up, there's nothing anyone can do about it. The last place I was in, the heat barely worked and it was fine. But here, it's like a furnace all the time. And the weather has been too warm to justify having the heat blasting away.
POTS, for me is the most disabling part of this illness. The lightheadedness, the dizziness, weakness, feeling so faint that if I don't lay down I will black out. Feeling like I'm not getting enough oxygen to my brain and not enough blood pumping to my heart so I get the heart pain from it. There is nothing more disabling. If you don't lay down, you will fall down. And once that blood pressure has dropped, you are not getting up again until it somehow comes back up, which is usually twelve hours later or so. It's a life destroyer. Unpredictable, you cannot live with it at all. And that, more so than any of the other symptoms is why I'm disabled. But then you can add in the cognitive problems with memory and audio processing, and intense pain all over. Who could work with this.
The poverty is getting to me now. Especially around the holidays. Not being able to work. Not being able to socialize. No one is calling me anymore. All alone now. No real future prospects of doing anything at all since the disease is not leaving me. I can't go back to school, I can't join in any religious services, I can't go get a job. I can't even be in the same room with too many people for very long before the sensory overload starts to kill me.
I don't really understand why God keeps me alive at this point. Because everyday, I feel like I don't know how much longer I can do this. This is not a life. This a horrible solitary confinement without end. And I'm not even allowed to know what I did to deserve to be this way. Or is the answer that it was simply genetics and in the wrong place at the wrong time? The vaccines, the lyme, the whole toxic world we live in. Maybe we'll find out someday.
I had a life once. I had friends. My phone always rang. I had a real social life of travel and going out to dinner and bars and all kinds of things. I spent hours and hours at the gym that I loved. I had a best friend and dates and even almost got married at one point. Holidays were spent with friends and family. And that's all gone now. Everything is gone. Gone as if someone exploded a nuclear bomb, and I'm stuck living in the fallout. The nuclear winter that never ends. And someone is always waiting to harm me and say something nasty and kick me when I'm down. What kind of life is that? Who would want it? When you lose your ability to work, socialize, do much of anything at all and each day is spent on basic survival. Just praying you can make something to eat or make it to the bathroom and back. And if you're very lucky you might be able to get your mail or take out the garbage, only to get lightheaded and weak and sick and dizzy again and having to go lay down. This is one of the cruelest diseases out there.
People rally around cancer patients, they get tons of support and help. AIDS patients, many of them now, get real treatments that keep them going just fine. They still work, go to school, even have children. What do we get? Nothing. Those of us who have this severe, we are left in limbo, to watch our lives go nowhere with no help or support in site.
I'm just so tired of it. I'm tired of people not understanding because we don't look sick enough to them. I'm tired of being mistreated, misjudged and basically throw in the garbage.
And I get no credit for all that I have accomplished while sick. I hope the reward's in heaven on that.
So tonight I'm awake and alone and freaking out that I'm running out of everything and can't buy anything till my money's in at the end of the week.
Over twenty years of this. I don't really know what keeps me going anymore. I don't believe in a miracle cure. And I really don't know what's going to happen. I wish I did.
