posted
A general question: How do you cope with the non-lymies that don't understand our limitations?
Of various family and friends that have known my decade-long health battles, I'm down to one person who seems to still understand, and does not expect more from me than my body permits. When I don't do what the others want, recent suggestions include: "fly to Iceland", "join for a 10 mile hike", "put up with abuse", then they gradually withdraw from interacting with me. It becomes increasingly isolating. Socializing online helps a bit, but for me it's not a sufficient substitute.
Other than getting well, I don't see a magic answer, but perhaps there are coping methods that have worked for others, hence my question. Thanks.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
posted
I love LF. website. I have met some great friends there and may never get to meet them in person but have a good relationship with many. Do you have a church that has a chronic pain/illness group? I hope to start a skype group so we can have some human to human contact online at least.It is hard but we all care here. I am PM you.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
posted
I understand too. It's difficult. Being really sick (and looking normal) has led to really idiotic suggestions from 'friends' that drop in on occasion. My favorite one today: "You should just fly down to Florida and have a month vacation!" Me: "really? how about you pay all my bills for that month including travel expenses, then we might have a deal."
I'm learning that you really can't expect people that don't get it, to get it. And its really not our job to *make* them get it. I too am down to about 1 friend that truly is supportive, and my parents/brothers (which is more than even others can count their blessings for!)
Yet, it still gets lonely. I'm trying to focus on giving myself all the care and attention that others aren't capable of giving me, and hoping that some day, i will be strong enough to love others just as much. Once I can do that well, I'm hoping that will open up the door to new people who see a strong fighter. Until then, isolation and occasional socialization it is. It's quite the delicate dance. ugh.
Hang in there! I'm better at using facebook than lymefriends but I like both. I find most of my support right here on Lymenet.
posted
dguy, I totally get what you are saying. For me going to a lyme support group was huge. A real live group that understood me without discrimination. It sucks that from the outside we look completely "normal". I can say this from the perspective of someone who has had brain surgery for a tumor( which was a walk in the park compared to lyme) . While learning how to walk and during recovery with a giant set of staples in my head, I was treated with so much respect. With lyme it has been such a huge fight to convince people around me of the significance of this horrid disease.
Posts: 342 | From northern california | Registered: Dec 2010
| IP: Logged |
posted
Thanks for the replies. What I'm hearing confirms my thinking that being isolated by others is a common problem, and that all we have left is a Molokai Island of sorts.
Being homebound means attending a support group is unfortunately not a practical option for me.
Anyhow, I'm not sure I'd have much to share with a support group, nor would get much out of it. "Venting" doesn't accomplish much since for me that's little more than rehashing the intractability of our situation. Hearing the woes of others would only confirm the hopelessness.
Hearing the stories of people getting well, now that would be good, but as we all know there's no magic bullet with lyme: what works for some doesn't work for others. Knowing that somebody recovered, escaped from Molokai, is nice, but still we can't use the same method, the rest of us remain marooned.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
moving to general support
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
The best suggestion I've come up with is to cope by doing whatever is necessary to find a solution. Maybe one of us will be both intelligent enough, strong enough, and financially capable enough to do what it takes to find the solution. We're the ones with the most to lose afterall.
After all my questions, and all my searching, no medical text book, physician, patient, or researchers has led me to figure out the mystery of Chronic Lyme Disease.
I understand almost every mechanism of what is happening that keeps us stuck, but I can't figure out what particular substance or external therapy can completely eradicate a long-time persistent borrelia burgdorferi infection. The complexity of the illness is a massive undertaking just to understand it. We're talking about Tick-born infectious disease syndrome. Borrelia b. is only one among many contributors, and even then -- there still isn't a technique to resolve and bring back health in all who fall to this illness.
I've done all of this mostly in isolation. After all the bulk of it is reading, and writing. It feels impossible sometimes. However, I've been told, and believe that the impossible sometimes takes just a little longer.
There is an answer. So, keep your head as busy as you can in order to compensate for the isolation. That's the best I can offer. When it becomes too much to bare, come to Lymenet and express yourself. Exploit whatever resources you have, and search for whatever resources are probably out there waiting to be explored.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
METALLIC BLUE,
What do you think the "technique to resolve" Lyme Bb leans towards? Does it lean towards external(meds, supplements etc)...or does it lean toward internal (within ourselves...individual body chemistry/makeup?) Do you know what I mean?
If you had to choose which way, with what you have pondered...what would you choose?
It is somewhat simplistic, but I am interested in what you think.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I believe the answer will be external. I don't know that taking medications will resolve the issue however. Some type of technology similar to Rife would be optimal, and it's feasible given what we already have seen in medicine.
I just don't know though. It's a very broad issue and this answer is really too simplistic.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
METALLIC BLUE,
Okay, thanks. I just wonder, though, if there isn't some sort of mechanism within ourselves...since the body does/can heal itself...a "switch" for the lack of a better term?...that once tripped, somehow...could lead to recovery?
It is a conundrum to me, that some get well, whether it is cancer, Lyme, etc...and some don't...although most don't resolve without treatment.
But then, that statement might not be true because many, many, people might actually have Lyme or cancer or whatever and it could of resolved without notice?...is that a possibility?
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sue, I think it's a possibility. If I really knew the answer, none of us would be here right now. The individual aspects of Chronic Lyme Disease are what make it complicated. Immune deficiency, co-infections, duration of illness progression, co-morbid illness, genetics being overwhelmed by a particular threat, environment, etc. Once we develop a technology that sufficiently out maneuvers the threat, the majority won't fall when infected. People who were otherwise healthy died all the time when they suddenly became infected with specific infectious diseases. Antibiotics changed that for the "majority."
I don't think juicing your veggies and taking every supplement under the sun is going to be the answer for the majority -- but certainly it can make the difference for some. So, we try all that we can consider for options with the hope that one of those "switches" will be tripped.
Some get HIV and never develop AIDS. It's rare. Some get Small Pox and survive, but it's rare. Now, thanks to the vaccine we used up until recently, we out maneuvered the threat of small pox with our technology.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
If there was a switch, I'd be flippin' it!
Then, I would do flips, cartwheels & take the kids to Disney World!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Most the time I am not doing well enough to be around others.
But, I find I choose where I go and who I am around when I am able.
Some steps. I take Rosie out to toilet via my power chair.
If I am doing well enough, I go into a friendly shop near home. I just window shop. It helps to take my mind off of lyme and get out of the house a bit.
I am still learning who I can stop and talk with here at the apartments and who I should pass on by...
There usually is a group of smokers standing outside.
Don't choose to be around the ones that talk about others. But, do goof up sometimes and find myself listening to their gossip and wishing I hadn't or had said something about it...in a constructive way.
Even going to the grocery store...I find some stores in town much more friendly than others and make life more do able.
I have really had to learn my limits and boundaries and stick with them.
If I don't, I get too weak to fix something simple to eat or even eat for that matter.
health has had to come first.
I am in a fog right now so not sure how clear this is.
REcently borrowed a TTY. So far I have just used it for business calls. But, hoping I will be able to use it to have a conversation with a neighbor.
Again, I need to watch who I talk to as I need to talk with someone who is positive.
For me, just being able to get out in the power chair and wave at people when they drive by on a low traffic street helps when I am able.
Most likely would not be out if it were not for Rosie needing to get out.
She is good medicine.
As far as people, I have yet to find someone locally that I can be around for longer than one or two sentences.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
i ve been in bed thinking about this very thing this morning.
how the heck did i get here.. a place where i can go weeks without seeing anyone? how could people who say they care can't be bothered to make a call or a short visit once in awhile?
my expectations are really low too! once every 3 or 4 months would be an improvement. crazy isn't it? makes me so sad
i crave human contact. a hug someone elses story, a giggle about something on TV with a person right in front of me seems so powerful right now.
i have been a good friend to lots of folks and my old friends are very wonderful humans but somehow its too hard. makes me question if i am the good person i thought i was. thats the hardest part for me.
i do think its more then us and our disease. i think we (as a culture) are becomming more and more self absorbed.
i love my state CA but while we are friedly we are not prone to neighbor stuff. even church folks don't reach out like we did in our country just fifty years ago.
the isolation we are feeling is the same for the elderly, young people who don't quite fit or other people with disablities. i think like many things you don't see it clearly till it hits you.
the latest major weather problems created an onslaught of people pointing fingers that someone else should have fixed it..... the roads, the airport etc.
i could be romanticizing but i think not that long ago we would have gone out and fixed it ourselves with our neighbors. shoveled each other out.
i guess thats what we have to do for each other shovel each other out until we are well enough so we can actively remind everyone of our shared humanity.
Posts: 161 | From sonoma county | Registered: May 2009
| IP: Logged |
posted
I've started being a lot more open and honest with people. It's hard to tell people how bad it really is because I just feel like a whiner. When people recommend outings to me, I have started responding by telling them that "I'm having some serious health issues and just can't go out" but they are welcome to come and visit. If I don't invite them to visit, they seem to think I don't want their help or company. It's like they don't hear the part about health problems and only hear that I won't go out with them. But if I invite them to the house, they seem to get it. And them I am very careful with scheduling to make sure they only come over when I can handle having company.
Posts: 707 | From Colorado | Registered: Jul 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic