posted
This is one of the most frustrating things i hear on a regular basis.
I do feel very blessed to still have function in my limbs and have all 5 senses but that does not mean im any less sick.
Ive watched my mother beat cancer i have seen first hand the struggles that come with a life threatening illness.
I have never asked for sympathy or pity only understanding that i am physically limited.
Its so frustrating that due to the fact that i am not wrapped in bandages i must be fine in the eyes of others.
Being a life long combative sports athlete; cuts , bruises, broken bones, stitches all of those things were so easy to fight through or chyme out due to the mental fortitude i possessed. With this illness it is impossible to chyme out or ignore symptoms or try to pretend it isnt there cause most of my symptoms limit my thought process and mental capacity.
While watching my mothers body grow weaker due to cancer seeing how strong she was and her fighting spirit was awe inspiring. I always told myself that if put in a similar situation i would be just as strong just as tough.
But i was not prepared for this. This monster that takes away my ability to think straight. Fills my mind with worry and agitation as well as limit my body and the dizziness the constant feeling of being off balance of being in motion never getting a break, its a nightmare. One i try my best to handle.
Sorry to vent but im sure most of you have been told the quote mentioned in the title of this thread by a less understanding individual and you too felt the frustration that comes with it.
IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't know how to respond to the ignorance either.
And I don't know how to not let it get to me.
It was so nice when I had a LLMD and focused on what I could do to regain my health.
Now, I just do the best I can with what I have.
Hoping you have a LLMD who is in your corner and helping you fight this disease.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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James1979
Unregistered
posted
Yeah, that's annoying.
A response that I frequently hear is: "At least it's easy to cure."
posted
Yea my LLMD has been great and is also a fan of the combative sports. I promised front row tickets if he can get me back in the ring lol.
Im on my 4th month of treatment so im not expecting miracles but i just wished the dang dizziness would let up so i can at least do some light exercise.
Most here know that Lyme is a nasty debilitating disease....except for some of the doctors...hahaa. My GP told me an inf dis doctor here told him there wasn't any Lyme in this area.
My GP and his daughter have Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Someone (who might have been on this board--I don't remember for sure where I read it) said she had breast cancer and had gone through chemo.
This was some time before she got lyme.
She said the cancer was easier to deal with than the lyme.
People usually say nothing when I mention my lyme. I know they're thinking I look ok--"maybe she does look depressed though" and "what's she doing here and not in bed if she's sick".
Posts: 1297 | From USA | Registered: Dec 2002
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James1979
Unregistered
posted
Marz - I thought that cancer vs. Lyme info was from an article. I was actually trying to find it recently myself, because I think it was very interesting.
Please tell us if you ever find the source. Thanks
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IGG 30+,39+,41+++ Posts: 80 | From Chicago IL | Registered: Jan 2011
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James1979
Unregistered
posted
There's a similar story about an AIDS/LYME hospital on the east coast, and the doctor there said that the Lyme patients suffer more than the AIDS patients.
If anyone knows the source of that, that would be useful also.
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posted
I can think of worse illnesses, like my dad had pancreatic cancer. BUT, at least when you tell people you have pancreatic cancer they KNOW what it is, they can empathize with that.
When you tell someone you have lyme, they look at you like, what? a tick bite? no big deal.
THey always, always, say "well, you look good!" well, I just wonder if they have any clue about how bad we actually feel, day after day, never ending..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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James1979
Unregistered
posted
quote:Originally posted by twicebitten: THey always, always, say "well, you look good!"
When you're as beautiful as I am, people tell you you look good no matter what illness you have. I get that all the time.
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Nope, most folks don't understand, but some do.
I have a friend who's mother died of breast cancer years ago while ironically she was getting a phd in cancer research. She said at the time, her mother was in the 10% that the medical community just didn't understand.
I know she gets my lyme illness as she relates to my being in that 10%.
So, for a way to look at this and maybe feel better, we are in that cutting edge, that 10% that folks just don't understand yet.
Fortunately, we have the internet and we can share our war stories, commiserate and some days just have fun.
Poor James, he's been cursed with beauty!
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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quote:Originally posted by twicebitten: I can think of worse illnesses, like my dad had pancreatic cancer. BUT, at least when you tell people you have pancreatic cancer they KNOW what it is, they can empathize with that.
When you tell someone you have lyme, they look at you like, what? a tick bite? no big deal.
THey always, always, say "well, you look good!" well, I just wonder if they have any clue about how bad we actually feel, day after day, never ending..
I know, people always tell me that, and it gets annoying when you feel so crappy. Maybe they are just trying to be nice, but still..it aggravates me (actually, what doesn't..lol).
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
it's the "oh aren't you over that yet? Well you must be doing something wrong" that gets me. Sometimes I just want to hit somebody!!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
It was from an article James1979. Found it! I get CALDA emails so thought it might be from there.
Not that all kinds or cases of cancers are equal. Some are more devastating than others. But so are some cases of lyme.
Posts: 1297 | From USA | Registered: Dec 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i rememer from a conference they said lyme pain is equal or worse to cancer pain
and lyme fatigue is equal or worse than congestive heart
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I empathize with you martial artists! I'm positive I got infected 10 years ago, but I first got really sick 3 1/2 years ago at age 52. I was an athlete: a long-distance cyclist, runner, avid Crossfit junkie. I could run 10 miles, deadlift 200 lbs., and bike across NYS.
Today I can barely make it up one flight of stairs. I have gained 50 lbs., had two spine operations because of arthritis, and have just had to take a leave of absence from work.
I told my parents last night that I had Lyme & Co. (newly diagnosed) and my mom said, "But you look good!"
arghhhhhhhhhhhhhhhhhhhhhh
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
well, until people can see bacteria swarming in your brain, they won't be able to see anything
that's just the facts of life
adding some gripes: when I told a friend I had Lyme, he asked if I had gotten a diagnosis from a doctor
(not a concerned tone of voice but rather a challenge)
I was stunned
if I had said, I have breast cancer, would he have questioned me about a diagnosis?
I thought, 'what do you want, you idiot, if I give you a list of my suffering you don't want to hear that either,
if I tell you in one word, you question it,
let's not talk about it then!'
how irritating
skies - you made me laugh out load, thank you:
quote: "Maybe they are just trying to be nice, but still..it aggravates me (actually, what doesn't..lol)."
yes, Bart does that to me, too!
about to eat everyone alive, at times, he he
well, better than feeling sorry for myself, I guess
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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