Talking to friends and family

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Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 1/14/2018 5:01 PM (GMT -6)   
Anyone else find it impossible to talk to friends and family...like you cant relate at all

Post Edited By Moderator (Traveler) : 1/14/2018 3:17:45 PM (GMT-7)


Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/14/2018 5:19 PM (GMT -6)   
Serfr,

The only thing I did to your post was add a title to it so more people will be taking a look.

I do! None of my family or friends wish to talk about any of these issues - nor do they want to hear about protecting themselves from getting these infections.

I am lucky that my hubby is as caring as he is and does listen to me, but I do try to not wear him out from it all - after all, this is a long term project. He allows me to do what I need to do, including being sure that my yard is safe for me to go out in/on.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Szabo246
Veteran Member


Date Joined Sep 2017
Total Posts : 505
   Posted 1/14/2018 5:27 PM (GMT -6)   
Yep I totally empathise with you on this. None of my friends even know, they know I got bit and took antibiotics and that’s it. Family don’t get it, my husband tries but also doesn’t quite get it, calls me a ‘herbivore’ everything I stand at the kitchen counter counting my drops which makes me chuckle smile but when I have days full of worry and anxiety he doesn’t really get it.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2026
   Posted 1/14/2018 5:27 PM (GMT -6)   
Not impossible. All things considered, most of the ones I've talked to are open enough, but I'm sure they get tired of hearing about it.

As far as being able to relate at all, I would say no. I don't think anyone can relate to most of the bizarre stuff we experience. It's not like anything else the average person has ever been through, unless they've had some other biotoxin illness, Gulf War syndrome, parasites, or some other illness that has bizarre symptoms.

I would say even most people with chronic illness of other kinds cannot relate, because most of those illnesses are more singular, meaning their illness affects much fewer parts or functions of their body. Also, their symptoms tend to be more consistent in nature so they are better able to adapt to the illness. With many of us, our symptoms can change from day to day and hour to hour and be very unpredictable. Makes it very hard if not impossible to adapt our lives and schedules to our symptoms.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 1/14/2018 5:28 PM (GMT -6)   
I second what Traveler said.

When you say you cant relate...do you mean that you have lost interest...or that things you did or talked about with family and friends before Lyme just don't seem to matter anymore?

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 1/14/2018 5:34 PM (GMT -6)   
They are tired of it too so i am just silent, occasionally they wish for the old me back, then go on with their normal lives..I would too if I were them..if I saw me i would give a little pep talk and then be uncomfortable and then step away..my brother emailed that he saw Kris Kristofferson in concert yesterday, i emailed back that he had a mistaken dx of dementia that was lyme..no reply..i guess i am "Mr Lyme" weirdo
Tried abx and iv abx for 2 years, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Cats Claw
Symptoms August 2013-
Extreme fatigue, dizziness, head pressure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, peripheral vision flashes, depression, panic attack

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 1/14/2018 5:37 PM (GMT -6)   
Hi goshawk, ..both!
Tried abx and iv abx for 2 years, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Cats Claw
Symptoms August 2013-
Extreme fatigue, dizziness, head pressure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, peripheral vision flashes, depression, panic attack

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/14/2018 5:39 PM (GMT -6)   
Like what WalkingByFaith said - they won't understand. We have a saying - they don't get it (understand) until they get it (get infected). It's all pretty crazy when you stand back and take a look at the wide variety of things we deal with in any given day - and with no set standard of testing, no set standard of treatments and no set standard that this is even real (thanks to the IDSA and CDC and their disinformation campaign).

So we do need to be understanding that they don't get it - but that doesn't mean we have to stay in close contact - especially if they make US uncomfortable!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2026
   Posted 1/14/2018 5:46 PM (GMT -6)   
Serfr said...
They are tired of it too so i am just silent, occasionally they wish for the old me back, then go on with their normal lives..I would too if I were them..if I saw me i would give a little pep talk and then be uncomfortable and then step away..my brother emailed that he saw Kris Kristofferson in concert yesterday, i emailed back that he had a mistaken dx of dementia that was lyme..no reply..i guess i am "Mr Lyme" weirdo


I'm sorry your brother made you feel bad. I understand the feelings of rejection. Those feelings hurt. It's good that you posted here about it and acknowledge those feelings for what they are.

For what it's worth, you are NOT Mr Lyme weirdo. You're a wonderful person who is unique and special in multiple ways that do NOT include anything to do with Lyme disease. Right now, you are sick and dealing with a very complex illness that will not be fixed overnight. Don't be ashamed or feel like you're less than because of Lyme.

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 1/14/2018 6:24 PM (GMT -6)   
Thanks Walking, its hard having a normal conversation with non lymies isnt it? I wish we all lived in the same neighborhood. And we were free to let fly with any adjective
Tried abx and iv abx for 2 years, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Cats Claw
Symptoms August 2013-
Extreme fatigue, dizziness, head pressure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, peripheral vision flashes, depression, panic attack

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 1/14/2018 6:52 PM (GMT -6)   
Hi Serfr,

Unfortunately, Lyme does change things for us ...not only the physical, emotional, and financial parts of our lives, but also our relationships with family and friends.

It can change us for the better too.

Buhner say this in his Healing Lyme 2nd edition book:

"Illness has a great many functions. It teaches us to be aware, to know ourselves. to understand how the world around us affects us each minute of our lives. It teaches us how to alter the fabric of our lives in order to become whole again...and how to remain that way.

Illness also teaches us about the darkness that each one of us must face sometime during our lives.
In the process, we learn how to enter the darkness and endure its touch.

We learn about the territory of illness, the depths of depression that often accompany it, and struggle to face our own mortality.

We acquire, often slowly and with great resistance, the qualities of character necessary to survive the journey".


As you heal and in time you will regain more of your old self...and social ways, but you will be different.

I know I have already changed.

While the world is busy and bustling by..I have chosen to take a deep breath, to smile at strangers, to enjoy small moments of joy....taking time to plan to do the things I can that are important...

because we can't always count on time being on our side.

Even though your family and friends have kept living their lives...they love you.

Reach out to them from your heart and your need for their caring...just because

Ask your brother for a moment of his time and tell him how you feel.

I wish you the best of healing , Jo

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 1/14/2018 7:35 PM (GMT -6)   
WalkingbyFaith said...
Not impossible. All things considered, most of the ones I've talked to are open enough, but I'm sure they get tired of hearing about it.

As far as being able to relate at all, I would say no. I don't think anyone can relate to most of the bizarre stuff we experience. It's not like anything else the average person has ever been through, unless they've had some other biotoxin illness, Gulf War syndrome, parasites, or some other illness that has bizarre symptoms.

I would say even most people with chronic illness of other kinds cannot relate, because most of those illnesses are more singular, meaning their illness affects much fewer parts or functions of their body. Also, their symptoms tend to be more consistent in nature so they are better able to adapt to the illness. With many of us, our symptoms can change from day to day and hour to hour and be very unpredictable. Makes it very hard if not impossible to adapt our lives and schedules to our symptoms.


Very well put.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 1/14/2018 7:36 PM (GMT -6)   
Thanks Jo! All the best to you as well.
Tried abx and iv abx for 2 years, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Cats Claw
Symptoms August 2013-
Extreme fatigue, dizziness, head pressure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, peripheral vision flashes, depression, panic attack
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