Apr. 28th, 2022 04:02 pm
Prompt 6: Pursuit
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murielle22-4-28
Therealljidol: Three Strikes, Week 6
Prompt: Pursuit
(NA: It’s no secret I’ve struggled with this prompt. I’ve wrestled with various ideas and it wasn’t until just before the final hour that I came up with something that actually made sense, wasn’t too personal for me to write coherently about, and was true, real and hopefully, perhaps relatable.)
I was diagnosed with Myalgic encephalomyelitis/Chronic Fatigue Syndrome at the end of 1993, or the beginning of 1994. I’m a little fuzzy on exactly which date because all I can remember is that my diagnosis came after the doctor received the results of a series of tests and it was either just before the holidays or just after. In any case, that was when I was finally given a definitive name.
I became markedly ill in 1985, the summer after my graduation (as a mature student) while I was working for a security company as an answering service operator. But I had struggled with my health for years, decades, before that. I was one of those kids who caught the flu twice, at the beginning and again at the end of each cycle. If everyone was sick for a week, I was sick for three. A simple cold that lasted for three to five days would knock me out for weeks. Why? Because a head cold would go into my chest, I’d develop bronchitis, and then my ears would become infected. It was just nasty.
So while for me, the CFS seemed to be sudden onset, it is generally thought to have been long-term by the medical professionals around me.
But, let’s get back to the diagnosis.
I went to my family physician, a doctor I respected and trusted, who had taken care of me for some sixteen years when I just didn’t have any energy after a bout with a bad viral infection. I lacked the vocabulary to describe what I was experiencing and so he diagnosed me with depression. A logical and common misdiagnosis for those of us with ME/CFS. He put me on Prozac for two years, telling me each time he gave me pills from his office in the back of the clinic, unmarked, with no packaging, just a stack of pills in his hands that he was trying me on something new, “Let’s see how you do on this?” It did exactly the same as before. My body didn’t react well to Prozac. (I found out about this years later when I requested my records for another doctor, another ME/CFS specialist.)
Then he decided I was bipolar and treated me with Lithium. I won’t go into details, but if it hadn’t been for the intervention of a dear friend and her pharmacist friends I would be writing this today. I wouldn’t be doing anything today. I would be dead. Turns out I wasn’t bipolar.
During this time, I went for a second opinion myself. Looked up a local doctor in the area and when to him. He ran a full battery of tests on me and found nothing out of the ordinary. He didn’t diagnose me with depression, but he did say that there was nothing physical that he could find, pretty much the same thing, right?
My family physician sent me to a psychiatrist who wrote, and I know this because I read his letter, that he couldn’t find anything wrong and that I wasn’t suffering from depression.
He then sent me to an internist. The internist wrote to him and told him that I wasn’t depressed, there was definitely something physically wrong, but he couldn’t identify the problem—I read his letter too.
So, nine years after catching the virus in the summer of 1985 which seemed to have pushed me over the edge I finally left my family physician and went to a doctor who treated mostly people who had ME/CFS, FM, etc., and after much testing and questioning and examination, he declared definitively that I was in fact suffering from ME/CFS.
I cried when I got the diagnosis, not because I thought it was a terrible one to get, but because I was so relieved to finally have one. To finally be able to say, this is real, it’s not all in my head. Of course, at the time I didn’t know that it was (at that time) untreatable and incurable. This doctor was open to my research on the internet and willing to try various different treatments by researchers all over the world, and for a while what he offered helped me. And, after a nine-year search I finally had a diagnosis which is what I’d been pursuing.
I had been sort of diagnosed with this illness around the end of the 1980s by a young intern who worked in my family doctor’s office for a while. She listened to my story and said, “I know exactly what you have. You have Myalgic Encephalomyelitis and you need to go to bed for the next six months.” My response was to laugh. Who can go to bed for six months? I wish I had listened to her. She knew what she was talking about. Had I gone to bed for six months then, I might have had a much different life. But I didn’t and she was gone the next time I went to the clinic.
Over the years, I have seen five specialists. Four of them have told me that I am one of their sickest patients. I have taken prescribed medications, and supplements up the proverbial whatsit, but I’m at the same level I was at the beginning. No cure, lifestyle changes are what they ultimately recommend. And I’ve tried. I’ve really tried and while, from time to time, I have had some relief, some change for the better for a while, nothing really works.
So I’ve made a decision. From now on, I’m listening to my body. I’m going to do what actually makes me feel better. And with all due respect, I’m not listening to any “body” else.
Therealljidol: Three Strikes, Week 6
Prompt: Pursuit
(NA: It’s no secret I’ve struggled with this prompt. I’ve wrestled with various ideas and it wasn’t until just before the final hour that I came up with something that actually made sense, wasn’t too personal for me to write coherently about, and was true, real and hopefully, perhaps relatable.)
I was diagnosed with Myalgic encephalomyelitis/Chronic Fatigue Syndrome at the end of 1993, or the beginning of 1994. I’m a little fuzzy on exactly which date because all I can remember is that my diagnosis came after the doctor received the results of a series of tests and it was either just before the holidays or just after. In any case, that was when I was finally given a definitive name.
I became markedly ill in 1985, the summer after my graduation (as a mature student) while I was working for a security company as an answering service operator. But I had struggled with my health for years, decades, before that. I was one of those kids who caught the flu twice, at the beginning and again at the end of each cycle. If everyone was sick for a week, I was sick for three. A simple cold that lasted for three to five days would knock me out for weeks. Why? Because a head cold would go into my chest, I’d develop bronchitis, and then my ears would become infected. It was just nasty.
So while for me, the CFS seemed to be sudden onset, it is generally thought to have been long-term by the medical professionals around me.
But, let’s get back to the diagnosis.
I went to my family physician, a doctor I respected and trusted, who had taken care of me for some sixteen years when I just didn’t have any energy after a bout with a bad viral infection. I lacked the vocabulary to describe what I was experiencing and so he diagnosed me with depression. A logical and common misdiagnosis for those of us with ME/CFS. He put me on Prozac for two years, telling me each time he gave me pills from his office in the back of the clinic, unmarked, with no packaging, just a stack of pills in his hands that he was trying me on something new, “Let’s see how you do on this?” It did exactly the same as before. My body didn’t react well to Prozac. (I found out about this years later when I requested my records for another doctor, another ME/CFS specialist.)
Then he decided I was bipolar and treated me with Lithium. I won’t go into details, but if it hadn’t been for the intervention of a dear friend and her pharmacist friends I would be writing this today. I wouldn’t be doing anything today. I would be dead. Turns out I wasn’t bipolar.
During this time, I went for a second opinion myself. Looked up a local doctor in the area and when to him. He ran a full battery of tests on me and found nothing out of the ordinary. He didn’t diagnose me with depression, but he did say that there was nothing physical that he could find, pretty much the same thing, right?
My family physician sent me to a psychiatrist who wrote, and I know this because I read his letter, that he couldn’t find anything wrong and that I wasn’t suffering from depression.
He then sent me to an internist. The internist wrote to him and told him that I wasn’t depressed, there was definitely something physically wrong, but he couldn’t identify the problem—I read his letter too.
So, nine years after catching the virus in the summer of 1985 which seemed to have pushed me over the edge I finally left my family physician and went to a doctor who treated mostly people who had ME/CFS, FM, etc., and after much testing and questioning and examination, he declared definitively that I was in fact suffering from ME/CFS.
I cried when I got the diagnosis, not because I thought it was a terrible one to get, but because I was so relieved to finally have one. To finally be able to say, this is real, it’s not all in my head. Of course, at the time I didn’t know that it was (at that time) untreatable and incurable. This doctor was open to my research on the internet and willing to try various different treatments by researchers all over the world, and for a while what he offered helped me. And, after a nine-year search I finally had a diagnosis which is what I’d been pursuing.
I had been sort of diagnosed with this illness around the end of the 1980s by a young intern who worked in my family doctor’s office for a while. She listened to my story and said, “I know exactly what you have. You have Myalgic Encephalomyelitis and you need to go to bed for the next six months.” My response was to laugh. Who can go to bed for six months? I wish I had listened to her. She knew what she was talking about. Had I gone to bed for six months then, I might have had a much different life. But I didn’t and she was gone the next time I went to the clinic.
Over the years, I have seen five specialists. Four of them have told me that I am one of their sickest patients. I have taken prescribed medications, and supplements up the proverbial whatsit, but I’m at the same level I was at the beginning. No cure, lifestyle changes are what they ultimately recommend. And I’ve tried. I’ve really tried and while, from time to time, I have had some relief, some change for the better for a while, nothing really works.
So I’ve made a decision. From now on, I’m listening to my body. I’m going to do what actually makes me feel better. And with all due respect, I’m not listening to any “body” else.
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*Hugs* <3
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- Erulisse (one L)
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Thanks so much for reading and commenting. <3
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Thank you so much! <3
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Your poor friend. My heart goes out to her.
Thanks for taking the time to read and comment. <3
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Thank you so much! <3
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Not the same condition, but my partner has had a host of issues trying to get an ADHD diagnosis as an adult. And like you, when they finally did after years of being told that it was all in their head, it's a hard adjustment! This was a great response for the prompt, and unfortunately, too relatable!
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Thank you so much for your comment. <3
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I'm sorry you have to deal with all of that - you're such a wonderful person and you don't deserve it. But I love that you take it in stride. :)
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I do think you are the expert on you. Only you knows how things do or do not help you.
I really hope...somehow, things improve. There are medical advances every day and maybe someday they can find good answers for you.
How horrible you were given wrong treatments for so very long :(