May 31, 2016
I am in the clear.
I have no infection in me now. At least, I don't see any reason to get tested. My clinical evaluations have been clear.
The Hell is over but the nightmare is only a step behind me. Writing all these things down had made that more clear to me than most people might ever know.
For the first days of this month long blogging, I had nightmares I was sick again. I had to walk away from my computer because reliving and communicating, you know, my 20s, brought out anxiety provoked crying.
And it proved to me that I still live with this sickness - even if it is just the memory.
Last Year of Treatment
Things got harder for me emotionally as things I got better for me physically. Actually, there is no point during a life with tick-borne illnesses that things get easier. Not one moment from infection, not through treatment and not in recovery. Nothing is easy. Nothing even feels worthwhile. Because at the end of it, you are a chronic case.
In my last year I started moving from a state of pure apathy and total memory loss to one of ALL the thoughts and ALL the memories and ALL the emotions.
I had feelings I hadn't felt for years and the energy to act on them. All at once.
With this, was the sudden inexperience of how to deal with them. It was like a weird, bad puberty. I was actually missing 15 years of life compared to my peers. But, when you stop feeling feelings for 5+ years, it's like tying to figure them out again.
Like riding a bike.
I was dating (because, by the way, men are desperate and I didn't look sick) and I was lucky to have someone in my life who could help me with impulse control based on emotions. And making decisions based on what I thought I should be rather than what I was.
I was lucky I managed to pull some friends into my like that I could text people thoughts and hear back, "Amanda, no. Amanda. No."
Emotions
I found a lot of challenges were me reverting back to a helpless state because I just never had to push past hardship.
I know, I know, it seems like I dealt with a lot that I had to push past. But, it's not the same as dealing with something being out of reach and having to move to get it. My frustration level was through the life over "daily struggles" because it felt like. . insults, if that makes sense. After getting through everything, life had the audacity to make me deal with struggles which seemed like things everyone could handle but me. And they were hard.
The point was, now I had to improve and not go back to "ok, I'll just sit here" which was what I normally did. I had to engage with my environment. I couldn't be afraid to do things that were different to me because everything was different and I had to be in that world now.
Coming back into this world is hard.
I was SUPER anxious over moving away from the rituals I developed and plans and structures. I was still in survival mode - I was still fighting and knew that any moment, any heartbeat, could be death or relapse.
I had internal meltdowns.
All I ever had to do was put my keys in this place, shoes in this place and watch Law & Order. Now I had to go to a wedding. Or meet someone for dinner. I didn't have procedures for that and I was afraid I would "get lost" in my mind or black out or - what if I got stuck?
I had to let go of everything I developed to keep me appearing sane and alive and functional.
After four years at the same job with people I liked - I cried all the way to my first work happy hour because I wasn't going home which is what I always did. Then I panicked because the people I worked with for five years were not at desks, I had to walk into a room and find them and I had an anxiety episode in my car while violently texting "OMG, you here? Lol" because what if I didn't remember what they looked like?
The split brain I developed was still there. I could see my panic and disarray and I could see this other person telling me it was ok and I had to do it.
Because I'm not a flake or a jackass or unworthy. I was horribly, horribly sick. And I knew, as I always had known, I had to try 3x harder and work 5x harder just to be equal with those who were next to me.
Remaining Physical Damage
I still have brain damage in my central brain, so my balance is off. My memory is not the best in the short-term area but I don't think it's noticeable. I'm better at just owning it.
"I know you just told me ___, you're going to have to tell me again."
My left side of my body is weaker and more unstable no matter what I do. In fact, I have a sort of half-smile which is left over from the slight Bell’s Palsy I got. If I think hard enough, I smile with both sides of my face. Which is. . like. . .unnoticeable to anyone but I see it.
It took about two years for my thyroid to start working again. I have been off thyroid medication for about a year. I have goiters on my thyroid from its inability to function. Like with my adrenals, it can crap out and come back, so, it's you never know.
My adrenal glands crapped out to the point of almost having full-blown Addison’s Disease. After three years, I am off medication and just dealing with the fatigue.
My digestive system is destroyed – I have food intolerance and absorption issues. The illness or treatment probably caused it, but I might never know. It's just how I have to live. Many, many people quiz me about where I think "this came from" because the amount of stuff I went through is never talked about. Even if it was - it's impossible in the American culture to truely accept someone who can't eat a variety of foods. Check out my Things I Eat page for how I cope - which I think it perfectly normal.
I have a heart murmur from the damage sustained. While my heart did recover as the infection left me, it beats slower and it has been weakened in the years of attack and stress of surviving.
I doubt I will see 60 years old. Maybe that sounds like a far way off, but, I'm 35. Having an expiration date is. .a thing. Most people poo-poo it, how can I know? Well, I don't know, I'm not an idiot. But I did track and trace people like me who have gone through the same treatments. It does destroy your body and it does take a toll.
The concept that the 15 years of infection and damage and side-effects of medications doesn't really matter because tick-borne illnesses aren't really that serious is alive and well in my world.
Remaining Disconnect
This part is harder for me to connect with.
I have no knowledge of anything that happened in the world or in popular culture from 1998-2011. No music, movies, people. If there was a movie I was supposed to see, an experience I was supposed to have – I did not have it. My life was only medical. I shuffle awkwardly when people say, “What do you mean you never saw ____? It’s a classic!”
I am still disconnected from the culture and habits my peers have.
I frequently forget how old I am. And when tired, I think I am 27 and it's 2011 - which makes no sense because I was 21 in 2011. And I'm currently 35. I'm almost middle aged - I'm at the point where I can't do what a 20-year-old can do but I was never 20. I just moved from Hell to middle age.
I have a missing medical history. It's not missing, though. It becomes a dictation of how Dr. Burke abused me and I always had that first negative Lyme test and I could not have had it. It becomes a lecture at me for my stupidity in letting myself go through these treatments. It stands as a memorial and instigation to doctors who can't believe the proof. Or just move on and file it under, "it doesn't matter."
Pill Fatigue
I have a difficult time swallowing pills. I just react with an inability to choke them down because I know something really bad is going to happen. Nothing bad is going to happen. I just can't turn off the side-effect alert in my brain.
OCD Shadows
I still maintain a level of ritual in how I do certain things - like where I put my keys. I still have times when I have bouts of Obsessive Compulsive Disorder (OCD) with hand washing. Thankfully, it has been a few years since I had a session that impacted my life.
The shadow is there - I need to save the world and I will do it by washing my hands.
Conditioning
To this day, when I see a red and blue stripped awning, I get nauseous. It was some store that was close to the doctor's office. I don't know why I would always see it when we drove past it - and it was somehow a reminder of how bad things were about to get.
There are plenty of little things that I am repulsed by that I don't even get sometimes. Certain smells, certain tastes. The smell of my Mom's car, the taste of energy bars. . .
Eating Disorder
Because of my food intolerance, I live a lifestyle not unlike someone with an eating disorder. I merely do not eat if I am too afraid to eat. I have spent these four years since getting my tests back working hard to only eat one meal a day. I am often hungry but I will not eat because I don’t want deal with the possible effects. If I do eat something I can’t have, which is not hard, I will have explosive diarrhea or crippling constipation. For months, my stomach and intestines will burn and bloat and cramp.
If I do enough damage, I won’t get hungry at all and I could go days without eating.
Trust
I don’t trust doctors. I don’t trust the medical community. I should probably see doctors to help me rebuild my body – but I don’t trust anyone. And even with my entire medical file in hand, no doctor would read it. No doctor would believe me. This is all I know. I truly believe I am 10 minutes and a couple dollar signs.
BS Indicator
I will politely listen to you tell me about your pre-packaged powder miracle drink or how yoga healed your cancer – but I know it is 100% BS and I hate that you live a life that allows you to believe that.
A friend told me I could cure myself with a certain yoga pose.
I wonder what yoga pose cures cancer and AIDS.
Don’t waste you cures on me, general public. There are real problems out there ready to gut you.
Don't get me wrong, yoga and fitness and connecting with things you love is great. Just, stop telling me sleeping on granite will detox my body. My body detoxed itself, that's why I needed blood tests to check that my liver and kidneys were working - they remove toxins. Not stones.
I have no infection in me now. At least, I don't see any reason to get tested. My clinical evaluations have been clear.The Hell is over but the nightmare is only a step behind me. Writing all these things down had made that more clear to me than most people might ever know.
For the first days of this month long blogging, I had nightmares I was sick again. I had to walk away from my computer because reliving and communicating, you know, my 20s, brought out anxiety provoked crying.
And it proved to me that I still live with this sickness - even if it is just the memory.
Last Year of Treatment
Things got harder for me emotionally as things I got better for me physically. Actually, there is no point during a life with tick-borne illnesses that things get easier. Not one moment from infection, not through treatment and not in recovery. Nothing is easy. Nothing even feels worthwhile. Because at the end of it, you are a chronic case.
In my last year I started moving from a state of pure apathy and total memory loss to one of ALL the thoughts and ALL the memories and ALL the emotions.
I had feelings I hadn't felt for years and the energy to act on them. All at once.
With this, was the sudden inexperience of how to deal with them. It was like a weird, bad puberty. I was actually missing 15 years of life compared to my peers. But, when you stop feeling feelings for 5+ years, it's like tying to figure them out again.
Like riding a bike.
I was dating (because, by the way, men are desperate and I didn't look sick) and I was lucky to have someone in my life who could help me with impulse control based on emotions. And making decisions based on what I thought I should be rather than what I was.
I was lucky I managed to pull some friends into my like that I could text people thoughts and hear back, "Amanda, no. Amanda. No."
Emotions
I found a lot of challenges were me reverting back to a helpless state because I just never had to push past hardship.
I know, I know, it seems like I dealt with a lot that I had to push past. But, it's not the same as dealing with something being out of reach and having to move to get it. My frustration level was through the life over "daily struggles" because it felt like. . insults, if that makes sense. After getting through everything, life had the audacity to make me deal with struggles which seemed like things everyone could handle but me. And they were hard.
The point was, now I had to improve and not go back to "ok, I'll just sit here" which was what I normally did. I had to engage with my environment. I couldn't be afraid to do things that were different to me because everything was different and I had to be in that world now.
Coming back into this world is hard.
I was SUPER anxious over moving away from the rituals I developed and plans and structures. I was still in survival mode - I was still fighting and knew that any moment, any heartbeat, could be death or relapse.
I had internal meltdowns.
All I ever had to do was put my keys in this place, shoes in this place and watch Law & Order. Now I had to go to a wedding. Or meet someone for dinner. I didn't have procedures for that and I was afraid I would "get lost" in my mind or black out or - what if I got stuck?
I had to let go of everything I developed to keep me appearing sane and alive and functional.
After four years at the same job with people I liked - I cried all the way to my first work happy hour because I wasn't going home which is what I always did. Then I panicked because the people I worked with for five years were not at desks, I had to walk into a room and find them and I had an anxiety episode in my car while violently texting "OMG, you here? Lol" because what if I didn't remember what they looked like?
The split brain I developed was still there. I could see my panic and disarray and I could see this other person telling me it was ok and I had to do it.
Because I'm not a flake or a jackass or unworthy. I was horribly, horribly sick. And I knew, as I always had known, I had to try 3x harder and work 5x harder just to be equal with those who were next to me.
Remaining Physical Damage
I still have brain damage in my central brain, so my balance is off. My memory is not the best in the short-term area but I don't think it's noticeable. I'm better at just owning it.
"I know you just told me ___, you're going to have to tell me again."
My left side of my body is weaker and more unstable no matter what I do. In fact, I have a sort of half-smile which is left over from the slight Bell’s Palsy I got. If I think hard enough, I smile with both sides of my face. Which is. . like. . .unnoticeable to anyone but I see it.
It took about two years for my thyroid to start working again. I have been off thyroid medication for about a year. I have goiters on my thyroid from its inability to function. Like with my adrenals, it can crap out and come back, so, it's you never know.
My adrenal glands crapped out to the point of almost having full-blown Addison’s Disease. After three years, I am off medication and just dealing with the fatigue.
My digestive system is destroyed – I have food intolerance and absorption issues. The illness or treatment probably caused it, but I might never know. It's just how I have to live. Many, many people quiz me about where I think "this came from" because the amount of stuff I went through is never talked about. Even if it was - it's impossible in the American culture to truely accept someone who can't eat a variety of foods. Check out my Things I Eat page for how I cope - which I think it perfectly normal.
I have a heart murmur from the damage sustained. While my heart did recover as the infection left me, it beats slower and it has been weakened in the years of attack and stress of surviving.I doubt I will see 60 years old. Maybe that sounds like a far way off, but, I'm 35. Having an expiration date is. .a thing. Most people poo-poo it, how can I know? Well, I don't know, I'm not an idiot. But I did track and trace people like me who have gone through the same treatments. It does destroy your body and it does take a toll.
The concept that the 15 years of infection and damage and side-effects of medications doesn't really matter because tick-borne illnesses aren't really that serious is alive and well in my world.
Remaining Disconnect
This part is harder for me to connect with.
I have no knowledge of anything that happened in the world or in popular culture from 1998-2011. No music, movies, people. If there was a movie I was supposed to see, an experience I was supposed to have – I did not have it. My life was only medical. I shuffle awkwardly when people say, “What do you mean you never saw ____? It’s a classic!”
I am still disconnected from the culture and habits my peers have.
I frequently forget how old I am. And when tired, I think I am 27 and it's 2011 - which makes no sense because I was 21 in 2011. And I'm currently 35. I'm almost middle aged - I'm at the point where I can't do what a 20-year-old can do but I was never 20. I just moved from Hell to middle age.
I have a missing medical history. It's not missing, though. It becomes a dictation of how Dr. Burke abused me and I always had that first negative Lyme test and I could not have had it. It becomes a lecture at me for my stupidity in letting myself go through these treatments. It stands as a memorial and instigation to doctors who can't believe the proof. Or just move on and file it under, "it doesn't matter."
Pill Fatigue
I have a difficult time swallowing pills. I just react with an inability to choke them down because I know something really bad is going to happen. Nothing bad is going to happen. I just can't turn off the side-effect alert in my brain.
OCD Shadows
I still maintain a level of ritual in how I do certain things - like where I put my keys. I still have times when I have bouts of Obsessive Compulsive Disorder (OCD) with hand washing. Thankfully, it has been a few years since I had a session that impacted my life.
The shadow is there - I need to save the world and I will do it by washing my hands.
Conditioning
To this day, when I see a red and blue stripped awning, I get nauseous. It was some store that was close to the doctor's office. I don't know why I would always see it when we drove past it - and it was somehow a reminder of how bad things were about to get.
There are plenty of little things that I am repulsed by that I don't even get sometimes. Certain smells, certain tastes. The smell of my Mom's car, the taste of energy bars. . .
Eating Disorder
Because of my food intolerance, I live a lifestyle not unlike someone with an eating disorder. I merely do not eat if I am too afraid to eat. I have spent these four years since getting my tests back working hard to only eat one meal a day. I am often hungry but I will not eat because I don’t want deal with the possible effects. If I do eat something I can’t have, which is not hard, I will have explosive diarrhea or crippling constipation. For months, my stomach and intestines will burn and bloat and cramp.
If I do enough damage, I won’t get hungry at all and I could go days without eating.
Trust
I don’t trust doctors. I don’t trust the medical community. I should probably see doctors to help me rebuild my body – but I don’t trust anyone. And even with my entire medical file in hand, no doctor would read it. No doctor would believe me. This is all I know. I truly believe I am 10 minutes and a couple dollar signs.
BS Indicator
I will politely listen to you tell me about your pre-packaged powder miracle drink or how yoga healed your cancer – but I know it is 100% BS and I hate that you live a life that allows you to believe that.
A friend told me I could cure myself with a certain yoga pose.
I wonder what yoga pose cures cancer and AIDS.
Don’t waste you cures on me, general public. There are real problems out there ready to gut you.
Don't get me wrong, yoga and fitness and connecting with things you love is great. Just, stop telling me sleeping on granite will detox my body. My body detoxed itself, that's why I needed blood tests to check that my liver and kidneys were working - they remove toxins. Not stones.
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