Lyme peut pousser au désespoir total
Tue Apr 10, 2012 at 05:43 PM PDT
My Friend with Lyme Committed Suicide.
I don't really know what to say. Have you ever known anyone who committed suicide?
Yesterday, I learned that a friend of mine committed suicide this past weekend. I met her years ago. We lived hours apart in Massachusetts. Neither of us were sick then. Soon after we met, though, I started to experience a downslide in my health and changes in my life and we lost touch. About two years ago, she contacted me in desperate need. She too, was debilitatingly sick. We both had advanced neurologic Lyme Disease.
I'm in a better place now than I was 5 years ago, when i finally got my diagnosis. But, she was still struggling with some of the worst symptoms. Still, I had not a clue that she was contemplating suicide. She always seemed optimistic that some practitioner would figure out something and she would start getting better. I had been getting better, so that gave her hope. Or so I thought.
She leaves behind two young children and a husband.
My emotions are all over the place.
Yesterday, I learned that a friend of mine committed suicide this past weekend. I met her years ago. We lived hours apart in Massachusetts. Neither of us were sick then. Soon after we met, though, I started to experience a downslide in my health and changes in my life and we lost touch. About two years ago, she contacted me in desperate need. She too, was debilitatingly sick. We both had advanced neurologic Lyme Disease.
I'm in a better place now than I was 5 years ago, when i finally got my diagnosis. But, she was still struggling with some of the worst symptoms. Still, I had not a clue that she was contemplating suicide. She always seemed optimistic that some practitioner would figure out something and she would start getting better. I had been getting better, so that gave her hope. Or so I thought.
She leaves behind two young children and a husband.
My emotions are all over the place.
I understand what she was going through and how excruciatingly difficult it is. The physical and cognitive challenges are compounded by the psychological battering you take from doctors telling you there is nothing wrong with you. If you've had your one month of antibiotics then, "it's all in your head." "You're just trying to get pain medication" Or, "you're just trying to skirt your responsibilities." It's hard to face life when the people you are supposed to be able to turn to in your darkest hour of need won't even affirm your reality. And the symptoms make it hard to simply exist. I'll explain.
I knew something was wrong with me back in 2005. It would be two years before I would know that it was Lyme Disease and by that time I was in pretty bad shape. I could barely walk. Many days I had trouble seeing. My neck and my knees ached constantly. I had sharp pains in my feet, as though someone had sliced across the bottoms of them. Very frequent migraine-type headaches which began with pain in the neck and than just took over my entire head.
So, I am very well aware of what my friend was living with.
Still, I find myself angry. It doesn't seem fair. And, yet I am. I am angry that she would do this to her children, her husband, her friends. Intellectually, I know that that is not how she was holding it. She likely was desperate for permanent relief or felt that she had become such a burden to everyone that we are all better off without her. Trust me, I've been there. Still, I can't deny that I'm angry.
I also feel guilty. Did I miss something? Should I have been there more? It was hard because we are hours apart and both so sick that travel is not easy and finding time when we're both in a good enough place to talk on the phone could be challenging. (Sound sensitivity makes talking on the phone a physically painful experience.) I'll never know if there was some cue I missed, some comfort I didn't provide or something I said which added to her pain. I'll likely spend the rest of my life a little tormented by that mystery.
Of course, I feel sad, too. I will miss our talks. I will miss having this companion who understood what I was living with. We both had been vibrant, athletic, high functioning women before contracting this illness which changed both our bodies and our personalities.
I'm also a little scared. Suicide rates amongst Lyme patients are high. (It has been noted that about 1/3 of neuropsychiatric Lyme patients exhibit suicidal tendencies. Sound sensitivity can be a particular trigger. This woman's story is so close to mine that I cried a long time after reading this initially.) I once tried to convince a doctor to make me deaf. Luckily, treatments I've had since then have reduced the persistence of the hyperacusis and I'm not currently feeling that desperate. But, again, I completely understand.
I haven't been anywhere near to feeling suicidal lately. I don't tend to depression and I seem to have good mechanisms for pulling myself out of my darkest moments. Certainly, there were times when I wondered if I had become nothing but a burden. I wondered if life were worth living. But, even at those times, I could never have gone through with killing myself, if for no other reason than I have a child. As much as I might suffer and as hard as that might be for a child to have a disabled parent, having that parent kill herself scars a child like nothing else. I love my daughter far too much to ever harm her in that way. I've never even let her know that the thought has crossed my mind.
I had spoken about this with my friend. She had said she was of a same mind. So, I had not been concerned that she would take this route. Clearly, I was deceived. Or, those borrelia burgdorferi just released one too many shots of neurotoxins into her brain and the part of her that was inhibited from taking this action was turned off.
That's the scary part. Wondering if that could happen to me. My Lyme seems to be under a certain amount of control. With the ensuing auto-immune disorder - Chronic Inflammatory Demyelinating Polyneuropathy - I began receiving weekly IV infusions of immuno-globulin. The doctor added an intramuscular antibiotic which slowly released through the week. Just a shot across the bow of the borrelia warship. Keeps the little buggers at bay just enough to see my symptoms improved to a point and remain steady. I feel better than I have in years. I don't know that I'll ever be my old self or fully functional. I need more rest and respite than others or I'm down for the count for days. Still, I do get out and do things now. I'm no longer a vegetable. Still, in the back of mind is always this shadow. Those borrelia spirochetes are still in there. Lurking. Poised. Opportunistic. Could they escape containment and drive me on the same path as my friend?
As I contemplate that, I again feel guilty. She has died. She was clearly suffering so badly that she saw this as the only acceptable course to take. Yet, while I feel anger and sadness, I also end up worrying about myself. This shouldn't be about me. Right?
Still, I would be lying if I said I could push these selfish thoughts aside, yet. This news has triggered anxiety for me.
Damnit.
I certainly hope she's at peace now. That any sounds she's hearing are exquisitely beautiful. That she is relieved of her bodily aches and pains. That she is vibrating with life affirming energy.
6:55 PM PT: Thank you all for the warm and wonderful feedback. One of the things I forgot to mention about life when you're so debilitated is the loneliness. One feels completely isolated and out of touch with the world. Only, I had a supportive home, a knitting community & DailyKos. Besides the incredible value of all the crowd-sourced information and storytelling, the profundity of the camaraderie here is immeasurable. I don't think I can ever express how much it has meant to me that you all have been here all these years.
I knew something was wrong with me back in 2005. It would be two years before I would know that it was Lyme Disease and by that time I was in pretty bad shape. I could barely walk. Many days I had trouble seeing. My neck and my knees ached constantly. I had sharp pains in my feet, as though someone had sliced across the bottoms of them. Very frequent migraine-type headaches which began with pain in the neck and than just took over my entire head.
Perhaps the hardest to live with though, was the hypersensitivity. Every sound is painful. The slightest whisper is a scream in my head. A car driving in front of our house was like a hurricane between my ears. Light hurt my eyes. Dishes clanking in the kitchen were piercing my brain. Eventually, I was spending all my time in my darkened room rolled up into a ball under the covers to avoid all sound and light and to minimize the pain in my body. Since I was like a sudden onset Alzheimer's patient, I wasn't even aware of the time passing most of the time.
I still have many of these symptoms, though not as persistently as I once did. Now, they are there in a less pronounced state until I get tired. I have to watch my energy output, my exposure to stimuli and my rest or I will get knocked right back into a state of pure physical hell. It is hard to explain how I have even endured.So, I am very well aware of what my friend was living with.
Still, I find myself angry. It doesn't seem fair. And, yet I am. I am angry that she would do this to her children, her husband, her friends. Intellectually, I know that that is not how she was holding it. She likely was desperate for permanent relief or felt that she had become such a burden to everyone that we are all better off without her. Trust me, I've been there. Still, I can't deny that I'm angry.
I also feel guilty. Did I miss something? Should I have been there more? It was hard because we are hours apart and both so sick that travel is not easy and finding time when we're both in a good enough place to talk on the phone could be challenging. (Sound sensitivity makes talking on the phone a physically painful experience.) I'll never know if there was some cue I missed, some comfort I didn't provide or something I said which added to her pain. I'll likely spend the rest of my life a little tormented by that mystery.
Of course, I feel sad, too. I will miss our talks. I will miss having this companion who understood what I was living with. We both had been vibrant, athletic, high functioning women before contracting this illness which changed both our bodies and our personalities.
I'm also a little scared. Suicide rates amongst Lyme patients are high. (It has been noted that about 1/3 of neuropsychiatric Lyme patients exhibit suicidal tendencies. Sound sensitivity can be a particular trigger. This woman's story is so close to mine that I cried a long time after reading this initially.) I once tried to convince a doctor to make me deaf. Luckily, treatments I've had since then have reduced the persistence of the hyperacusis and I'm not currently feeling that desperate. But, again, I completely understand.
I haven't been anywhere near to feeling suicidal lately. I don't tend to depression and I seem to have good mechanisms for pulling myself out of my darkest moments. Certainly, there were times when I wondered if I had become nothing but a burden. I wondered if life were worth living. But, even at those times, I could never have gone through with killing myself, if for no other reason than I have a child. As much as I might suffer and as hard as that might be for a child to have a disabled parent, having that parent kill herself scars a child like nothing else. I love my daughter far too much to ever harm her in that way. I've never even let her know that the thought has crossed my mind.
I had spoken about this with my friend. She had said she was of a same mind. So, I had not been concerned that she would take this route. Clearly, I was deceived. Or, those borrelia burgdorferi just released one too many shots of neurotoxins into her brain and the part of her that was inhibited from taking this action was turned off.
That's the scary part. Wondering if that could happen to me. My Lyme seems to be under a certain amount of control. With the ensuing auto-immune disorder - Chronic Inflammatory Demyelinating Polyneuropathy - I began receiving weekly IV infusions of immuno-globulin. The doctor added an intramuscular antibiotic which slowly released through the week. Just a shot across the bow of the borrelia warship. Keeps the little buggers at bay just enough to see my symptoms improved to a point and remain steady. I feel better than I have in years. I don't know that I'll ever be my old self or fully functional. I need more rest and respite than others or I'm down for the count for days. Still, I do get out and do things now. I'm no longer a vegetable. Still, in the back of mind is always this shadow. Those borrelia spirochetes are still in there. Lurking. Poised. Opportunistic. Could they escape containment and drive me on the same path as my friend?
As I contemplate that, I again feel guilty. She has died. She was clearly suffering so badly that she saw this as the only acceptable course to take. Yet, while I feel anger and sadness, I also end up worrying about myself. This shouldn't be about me. Right?
Still, I would be lying if I said I could push these selfish thoughts aside, yet. This news has triggered anxiety for me.
Damnit.
I certainly hope she's at peace now. That any sounds she's hearing are exquisitely beautiful. That she is relieved of her bodily aches and pains. That she is vibrating with life affirming energy.
6:55 PM PT: Thank you all for the warm and wonderful feedback. One of the things I forgot to mention about life when you're so debilitated is the loneliness. One feels completely isolated and out of touch with the world. Only, I had a supportive home, a knitting community & DailyKos. Besides the incredible value of all the crowd-sourced information and storytelling, the profundity of the camaraderie here is immeasurable. I don't think I can ever express how much it has meant to me that you all have been here all these years.
