posted
Perhaps some of us NEED to, for instance... drive in a car for three hours, take a plane flight, sit in a long meeting, stand in a long line, etc...
Have you worked with your LLMD or your regular doctor to have emergency pills to override fatigue, dizziness, orthostatic intoleract, low BP, and anxiety to put you in "GO-MODE" just to get through some necessary events that are normally anywhere from intolerable to relatively-terrorizing?
Posts: 200 | From Ohio | Registered: Apr 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm not sure there is such a thing that would totally negate the physical reality when one's body is simply saying "no" - we have to listen.
There are plans to help, in the long run, but no magic emergency pills for the moment - that would be SAFE.
Planning as to how to re-arrange any elements of a situation are important. There are so many alterations that will come to light, so many I never considered at first but then, I started to see more and more "other ways" to do things.
For instance, standing in line - actually, see what can be do to arrange for a chair or wheelchair, etc. - or get the task done some other way.
Driving a car for any length of time when one is not well is a dangerous thought. The world will likely not end if you just say "no" and very could for many if you don't.
One thing I learned is that many things I used to think just had to be done, and done by myself, well, that just turned out not to be so. I put myself (and likely others) at risk early on by just not facing the music and understanding that my body was at the end of being pushed around.
Learning to listen to my body and gauge what's reasonable to expect . . . not think my body is telling me "sure, go for it" just because that what I want, though. Be very careful about this notion that we just have to push harder, faster, stronger. That can be dangerous. Proceed with caution.
Above all, safety matters. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help manage intense stress in the moment, some have done well with a homeopathic formula READY RESCUE and diaphragmatic breathing. [that might be RESCUE REMEDY now that I think about it?]
Other homeopathics can be of help, too, and are generally very safe. More detail inside the thread above.
As for plane travel, well, yeah, that's one that just can't be planned perfectly all the time.
There have been threads here on that very topic. -
[ 05-04-2016, 07:39 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yeah, I stopped with highway driving months ago. Still do short drives when I'm feeling well.
More thinking about bigger picture... ....like some have said here, they work because they don't have a choice. And work, for some, means driving long distances, taking plane flights, sitting in meetings upright for three hours, etc.
Interesting to here if other posters have "go-to" stuff from their doc for that purpose...
Maybe tabs of florinef and cortef, with or without stimulants to prevent passing out.
Benzos for intolerable anxiety attacks,
Compression stockings (even if you don't normally wear them)
And whatever else applies.
Posts: 200 | From Ohio | Registered: Apr 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Keebler explained it well.
And there are no magic pills to fix all that is wrong. So sorry!
I would suggest adjusting what you are trying to do in your life so you don't spend your days being miserable.
Like Jimmy Buffett says, because he can't change the weather he is... "Going where the weather suits my clothes."
posted
Well, as another poster made reference to in some place on this site, not all of us have the luxury of (indefinitely) laying down in a room all day.
Some need to work, go places, do things.
Clearly some have the circumstances to allow that lifestyle, but others don't.
Posts: 200 | From Ohio | Registered: Apr 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Laying around all day suffering from Lyme disease ISN'T a choice and it certainly can't be considered a LUXURY.
posted
It is a choice if your ability to buy food and get shelter kills you before your lyme and associated disability does...
I respect people who can, and are able do that INDEFINITELY...
I am not one of them.
Posts: 200 | From Ohio | Registered: Apr 2016
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Go to a secluded spot beside a beautiful lake.
Sit down on a fold out chair, throw out a fishing line, and try to desimate the fish population.
Hours pass like minutes and you gain two minutes of life for every minute you fish.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I was so angry the other day when I saw your comment Ohio, but I didn't post the following. I thought you would see your thinking was so way off, so I didn't bother.
But, now seeing you still calling being sick, broke and homebound a CHOICE and a luxury, it appears you aren't at all connected to the reality of this situation.
Your comments are insulting.
Being unable to work and suffering from Lyme disease ISN'T a choice and it certainly can't be considered a LUXURY by anyone with a brain.
Have you ever wanted to go to work but were forced to lay sweating, moaning in pain and/or crying in a room all day for months to years to decades at a time, and the only trips out are NOT to work or to enjoy any kind of "lifestyle", but to doctors and hospitals, and usually in an ambulance?
Luxury? NO!
This laying around LUXURY you describe often comes after being so stinking sick you lose your job, lose your home, and are forced to give up your freedoms and live with others or on the streets.
It is putting yourself in incredible debt to have the basics like food and medications, and when that LUXURY runs out you find yourself STILL SICK, trying to make do with less than a minimum, and eventually end up homeless.
Many are forced to self-medicate because they don't have access to medical care.
THAT IS NOT A CHOICE.
Did I mention your image of LUXURY is feeling like you were going to die, or wanting to die every day to end the misery?
Your image of LUXURY- is it setting your 19 year old bed bound daughter in a wheel chair once a day and hooking her up to a talking board so she can try to communicate after the Lyme infection in her brain took away her ability to speak, walk, see and hear?
NOT A CHOICE AND NOT A LUXURY.
This LUXURY you think we have often means having to send your children to stay with others, or they are taken away from you because as a parent you are so sick you can't care for them. It often means losing your spouse over this LUXURY lifestyle.
This LUXURY means having to sell all of your possessions and even your family dog to pay for your medications and having nightmares after watching your children's tears as the new owner takes the dog away.
THAT IS NOT A CHOICE.
Is it LUXURY to have to paint your child's room completely black from top to bottom, and block off all windows and insulate the room and hallways leading to it because lights cause migraines and any sounds causes your baby to have seizures?
LUXURY is NOT 5 of 6 people in one family all having Lyme, and getting so sick they have to move in with relatives to a tiny 2 bedroom home, with only one able to work and then working 3 jobs to be able to feed the family and pay the light bill.
LUXURY involves having to travel out of state in a rented van or ambulance because there are NO doctors who know anything about Lyme within hundreds and hundreds of miles of you.
Is LUXURY being given misdiagnosis after misdiagnosis and meds that don't work, that make you sicker and sicker and that sometimes kill?
THAT IS NOT A CHOICE.
Those are REAL people's experiences and by no means is that their choice or a LUXURY.
It is ugly, devastating, painful and sick.
May you never get to that point. And may you reach out and help others who have lost everything and someday have a true understanding and some compassion for those who have been forced into this "luxury" lifestyle.
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