This photo reminds me of Lyme Disease.
For some of us it's more than debilitating illness - it's crushing confusion too. I remember showering and forgetting what I'd washed. Many times I was too weak to dry my hair; I went back to bed in towels.
Finally I got so sick and confused I went days without showering at all. (My ex-bf is a saint for taking care of me through all this.)
Lately there is heightened awareness of Lyme Disease.
All I can say is ABOUT DAMNED TIME.
For some of us it's more than debilitating illness - it's crushing confusion too. I remember showering and forgetting what I'd washed. Many times I was too weak to dry my hair; I went back to bed in towels.
Finally I got so sick and confused I went days without showering at all. (My ex-bf is a saint for taking care of me through all this.)
Lately there is heightened awareness of Lyme Disease.
All I can say is ABOUT DAMNED TIME.
When I first got sick I went to Michigan's DNR site to see if it was possible I had Lyme. According to that site, there was no chance. It did not exist in that area.
If the site had been accurate, I would have pursued correct treatment years earlier. But no, it took strange circumstances after two years of personal hell.
After I was finally diagnosed, a friend who works for a pharmacist asked him about it. He said Lyme was "deliberately under-reported because the state doesn't want to damage the tourism industry."
The DNR has since changed the website. Too little, too late. The undiagnosed Lyme turned my life upside down and I lost EVERYTHING.
An online Chronic Fatigue support group saved my life by leading me to diagnosis. I'm surprised they still remember me ... today I got an email.
"Hey there,
I have been having a weird symptom for about a month now and the CFS group thought you might know. I have been having this weird tingling in my back frm my shoulder blades down to the lower part of my back. It is a feeling like when your arm is asleep and is beginning to wake up. It is a numbness and tingling kind of feeling.
It is not painful, just annoying at times..........................It goes on for hours, and I wondered if you had any of these symptoms with the Lyme,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,"
I'm putting my response here in case anyone reading knows someone who's living with Lyme or similar illnesses.
"Hi Susan
There was one day when I forced myself to drive somewhere and I started losing feeling in the fingers of both hands. The numbness started crawling slowly from my hands to my elbows ... it was surreal. I drove straight to ER and they wrote it off as stress. (I thought I was having a stroke.)
That same week my shrink said my face was crooked, like I had Bell's Palsy. Someone in the group - Matt I think - saved my life by saying YOU HAVE LYME DISEASE. FIGURE OUT HOW YOU GOT IT.*
I'm doing great down here, my health is fine. I can't handle cold weather AT ALL. If we have a cold night I nearly cripple up.
You can forward this to the group if you like. In fact I wish you would. If anyone wants to talk they're welcome to write.
Part of what got me well was using my anger constructively. I made some changes:
I threw out all my meds. (I was furious that nothing was working - and actually felt a little better within a few weeks. This is me, it's not for everyone, but my undies are still in a bunch about pill pushing doctors.) Now I take vitamins and ... it just occurred to me, I never even get headaches any more. Maybe that's because of everything else I'm doing.
I moved to cleaner air and warmer temperatures. Not everyone can do that but it's part of what saved my life.
I treat my body like a temple - healthy fruits and veggies from a local farmer's stand and ZERO fast food. My diet is mostly vegetarian with eggs and dairy. Sometimes I slip and have fish or poultry. (I can buy fresh fish and shrimp from a fisherman around the corner ... so I know there is zero processing.)
Yoga has made an enormous change. ENORMOUS. It has been about a year I think. One of my friends from class said "I remember those first few times you came; I didn't expect you to last one full class." I could hear my joints grind. But I stuck to it.
The most important thing is find the right teacher. Mine is very gentle, asks what your issues are and makes accommodation for weaknesses.
Now I'm a 58 year old physically functioning at 35 year old levels in class.
I enhance the yoga with walking or bike riding. (Get outside, get sunlight.)
This is almost the best health I've been in in my life. The most flexible, the most active.
If I knew back then what I know now, I would have done the IV antibiotics and taken greater care with everything that went into my mouth, from liquids to solids; garbage in, garbage out. Food can harm or heal. I remember the depressions, the "comfort food" - or sometimes eating nearly nothing and still gaining weight. When we're sick our metabolisms go to hell.
And I would sign up for a gentle yoga class with an understanding teacher. I have gone from someone whose joints creaked getting out of the chair - someone who was so weak I can remember my feet literally flopping over and dragging on the worst days - someone who fell down the stairs about three times - to someone who can just about wrap her ankle around her neck.
Imagine ... go to a studio and find the right teacher. I can't stress that enough. There is even chair yoga for those of us who got totally rusted out from illness.
MOVE. Even (especially) if you don't want to. Sit and die or move and live.
I practice Iyengar yoga. It uses props for people with weaknesses, injuries and other limitations.http://en.wikipedia.org/wiki/Iyengar_Yoga
Sorry, I know that's too much but I hope you'll send it to the group. I almost have survivor's guilt, I remember how much it sucked to live that way and I never want to be in that position again!!!"
Susan - I suspect a few of the yoga positions we do would relieve that back weirdness. One of the first things we do in class is lie down on the floor on our backs and pull our knees into our chests - then rock back and forth. It relaxes the spine. We also do back stretches over bolsters that are incredibly relaxing/healing.
We don't walk out of class ... we pretty much float.
(End of email.)
If the site had been accurate, I would have pursued correct treatment years earlier. But no, it took strange circumstances after two years of personal hell.
After I was finally diagnosed, a friend who works for a pharmacist asked him about it. He said Lyme was "deliberately under-reported because the state doesn't want to damage the tourism industry."
The DNR has since changed the website. Too little, too late. The undiagnosed Lyme turned my life upside down and I lost EVERYTHING.
An online Chronic Fatigue support group saved my life by leading me to diagnosis. I'm surprised they still remember me ... today I got an email.
"Hey there,
I have been having a weird symptom for about a month now and the CFS group thought you might know. I have been having this weird tingling in my back frm my shoulder blades down to the lower part of my back. It is a feeling like when your arm is asleep and is beginning to wake up. It is a numbness and tingling kind of feeling.
It is not painful, just annoying at times..........................It goes on for hours, and I wondered if you had any of these symptoms with the Lyme,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,"
I'm putting my response here in case anyone reading knows someone who's living with Lyme or similar illnesses.
"Hi Susan
There was one day when I forced myself to drive somewhere and I started losing feeling in the fingers of both hands. The numbness started crawling slowly from my hands to my elbows ... it was surreal. I drove straight to ER and they wrote it off as stress. (I thought I was having a stroke.)
That same week my shrink said my face was crooked, like I had Bell's Palsy. Someone in the group - Matt I think - saved my life by saying YOU HAVE LYME DISEASE. FIGURE OUT HOW YOU GOT IT.*
I'm doing great down here, my health is fine. I can't handle cold weather AT ALL. If we have a cold night I nearly cripple up.
You can forward this to the group if you like. In fact I wish you would. If anyone wants to talk they're welcome to write.
Part of what got me well was using my anger constructively. I made some changes:
I threw out all my meds. (I was furious that nothing was working - and actually felt a little better within a few weeks. This is me, it's not for everyone, but my undies are still in a bunch about pill pushing doctors.) Now I take vitamins and ... it just occurred to me, I never even get headaches any more. Maybe that's because of everything else I'm doing.
I moved to cleaner air and warmer temperatures. Not everyone can do that but it's part of what saved my life.
I treat my body like a temple - healthy fruits and veggies from a local farmer's stand and ZERO fast food. My diet is mostly vegetarian with eggs and dairy. Sometimes I slip and have fish or poultry. (I can buy fresh fish and shrimp from a fisherman around the corner ... so I know there is zero processing.)
Yoga has made an enormous change. ENORMOUS. It has been about a year I think. One of my friends from class said "I remember those first few times you came; I didn't expect you to last one full class." I could hear my joints grind. But I stuck to it.
The most important thing is find the right teacher. Mine is very gentle, asks what your issues are and makes accommodation for weaknesses.
Now I'm a 58 year old physically functioning at 35 year old levels in class.
I enhance the yoga with walking or bike riding. (Get outside, get sunlight.)
This is almost the best health I've been in in my life. The most flexible, the most active.
If I knew back then what I know now, I would have done the IV antibiotics and taken greater care with everything that went into my mouth, from liquids to solids; garbage in, garbage out. Food can harm or heal. I remember the depressions, the "comfort food" - or sometimes eating nearly nothing and still gaining weight. When we're sick our metabolisms go to hell.
And I would sign up for a gentle yoga class with an understanding teacher. I have gone from someone whose joints creaked getting out of the chair - someone who was so weak I can remember my feet literally flopping over and dragging on the worst days - someone who fell down the stairs about three times - to someone who can just about wrap her ankle around her neck.
Imagine ... go to a studio and find the right teacher. I can't stress that enough. There is even chair yoga for those of us who got totally rusted out from illness.
MOVE. Even (especially) if you don't want to. Sit and die or move and live.
I practice Iyengar yoga. It uses props for people with weaknesses, injuries and other limitations.http://en.wikipedia.org/wiki/Iyengar_Yoga
Sorry, I know that's too much but I hope you'll send it to the group. I almost have survivor's guilt, I remember how much it sucked to live that way and I never want to be in that position again!!!"
Susan - I suspect a few of the yoga positions we do would relieve that back weirdness. One of the first things we do in class is lie down on the floor on our backs and pull our knees into our chests - then rock back and forth. It relaxes the spine. We also do back stretches over bolsters that are incredibly relaxing/healing.
We don't walk out of class ... we pretty much float.
(End of email.)
*
How I got Lyme? I was sitting in my ex-boyfriend's family room watching Sex and the City. He was on 5 acres with deer. My Bouvier ... who was lying at my feet ... liked to go out back and chase them.
Apparently the deer tick crawled off her, onto the recliner and into me. I felt my flesh move, clawed "the thing" out with my nails and it was full of my blood.
I had no idea it was a tick.
I got sick a few months later. During the two years of crushing illness, not knowing what I had - my mother started talking funeral arrangements.
Lyme Disease is that damned bad.
If you know anyone who has strange symptoms, please have them investigate Lyme Disease.
I've been blessed to be able to help bring a few others to diagnosis and treatment. In my case the IV antibiotics helped mentally, but I'd had it too long. It took a move to a warmer climate combined with the afore-mentioned lifestyle changes to turn my health around.
My long illness inspired my book:
Sick Mick's Guide to Selling Antiques & Collectibles
Staying busy mentally - or at least trying to - kept me from drowning in despair.
http://www.amazon.com/gp/product/0978739302/ref=s9_simz_gw_s8_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=1Z0P54T7QNPJB2KB8VQ8&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846
Lyme Disease is that damned bad.
If you know anyone who has strange symptoms, please have them investigate Lyme Disease.
I've been blessed to be able to help bring a few others to diagnosis and treatment. In my case the IV antibiotics helped mentally, but I'd had it too long. It took a move to a warmer climate combined with the afore-mentioned lifestyle changes to turn my health around.
My long illness inspired my book:
Sick Mick's Guide to Selling Antiques & Collectibles
Staying busy mentally - or at least trying to - kept me from drowning in despair.
http://www.amazon.com/gp/product/0978739302/ref=s9_simz_gw_s8_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=1Z0P54T7QNPJB2KB8VQ8&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846
No comments:
Post a Comment