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The Watercooler
Need advice from those who are chronically ill (long)
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<blockquote data-quote="Pam R" data-source="post: 259699" data-attributes="member: 108"><p>I've had Lyme since a child. I know what she's going through. I'd not push her, as it's apt to make her worse. It made me worse.</p><p></p><p>Also, being stressed was the absolute worse thing, for me. I got a lot worse, rapidly, when stressed.</p><p></p><p>I also have the neurological, cognitive, metabolic stuff, in addition to other symptoms.</p><p></p><p>It was not mentioned but I'm assuming she has had appropriate, but often very hard to get, treatment for Lyme from a Lyme Literate doctor, also hard to find and get into see?</p><p></p><p>I think she needs to be encouraged to do what she can, at home. I expect the school can set up tutors for her.</p><p></p><p>As far as the Obsessive Compulsive Disorder (OCD), I can't comment on that, having no experience.</p><p></p><p>But you are right about the spoon story. One thing both husband and I hate is when people say, "But you both look fine!" Invisible disability stinks! No one can see the pain in our bodies that's 24/7.</p><p></p><p>And migraines are a typical Lyme symptom, one I've managed to avoid, so far.</p><p></p><p>As far as 12 hrs of cognitive testing, she may have managed that, but it had an end. She could not manage it day after day, I bet, and have to deal with the pressure of a school setting.</p><p></p><p>I've managed several bouts of the testing, but it wiped me out for days afterwards.</p><p></p><p>I just know what my life has been like, and what's happened when well people who really have no clue what it like, insist you do more than you are able.</p><p></p><p>Pam R.</p></blockquote><p></p>
[QUOTE="Pam R, post: 259699, member: 108"] I've had Lyme since a child. I know what she's going through. I'd not push her, as it's apt to make her worse. It made me worse. Also, being stressed was the absolute worse thing, for me. I got a lot worse, rapidly, when stressed. I also have the neurological, cognitive, metabolic stuff, in addition to other symptoms. It was not mentioned but I'm assuming she has had appropriate, but often very hard to get, treatment for Lyme from a Lyme Literate doctor, also hard to find and get into see? I think she needs to be encouraged to do what she can, at home. I expect the school can set up tutors for her. As far as the Obsessive Compulsive Disorder (OCD), I can't comment on that, having no experience. But you are right about the spoon story. One thing both husband and I hate is when people say, "But you both look fine!" Invisible disability stinks! No one can see the pain in our bodies that's 24/7. And migraines are a typical Lyme symptom, one I've managed to avoid, so far. As far as 12 hrs of cognitive testing, she may have managed that, but it had an end. She could not manage it day after day, I bet, and have to deal with the pressure of a school setting. I've managed several bouts of the testing, but it wiped me out for days afterwards. I just know what my life has been like, and what's happened when well people who really have no clue what it like, insist you do more than you are able. Pam R. [/QUOTE]
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Need advice from those who are chronically ill (long)
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