posted
It's really hard to write this. I have, like, no friends.
It is so hard to keep up a conversation with people.
Recently I have been re-connecting with old friends and it makes me realize just how far into this abyss I have fallen, lol.
I got caught up with all the mothering kind of stuff. You know busy with the kids and their activities and obligations.
Then I was just so exhausted juggling the wife, mother, job and mystery illness.
Now I've been treating for the last 15-16 mos and I am realizing I have nobody to call on the phone.
I have nobody to just go out and take a walk with. I have nobody to go out with where I can just be myself.
I'm naturally pretty outgoing. But not anymore. I've lost the ability to talk to people.
Am I alone in this?
Posts: 797 | From New York | Registered: Feb 2008
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
This is the only place where I have people to talk with. Well not true... I have soccer, bowling and neighbors and one true friend thats a guy that I very rarely see. I am like you, I dont know what to talk about with people...I just listen.
If it weren't for the boys I wouldn't have a conversational life.
Do you have family(mom,dad,siblings)you can call?
Sometimes I get jealous when my sweetheart goes out with friends from work or baseball games and leaves me behind and knows I can't go because we don't have a sitter for the boys.
Sorry this post is about you not me.
We are here for you Carly. You can PM me any time
I know it's not a voice, but it's a start in relearning to communicate. I have a dog that walks with me and listens. Take care. Diane
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
No carly, you're not alone. It's virtually impossible for anyone who hasn't experienced the horror of TBD's to understand and to try and lead you back into the world-that-doesn't-know-TBD. You'll feel left out and left behind for a long time and they look at you in odd ways when you voice an opinion that seems completely out of their thinking. Your values will never be the same. This is esp. true if you're ill and raising kids at the same time, etc. So exhausting. It takes time to regain your strength.
Great thing about Lymenet is that when there's no one else to talk with, there's always someone here!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You asked, " Am I alone in this? "
No, not at all. Sorry. You are still a whole person. May you soon find friendship and meaningful connection just right for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
For me, it just takes to much energy to be around other people. It's to hard to listen and to hard to think of what to say.
You're sooo not alone.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I know EXACTLY how you feel.
Like Keebler said in a previous post "Lyme sure is lonely."
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Well, keebler you're right: I'm sorry I'm not alone in this. And I hope we all find meaningful friendships.
It's nice (in a bittersweet way) to be understood this way.
I know what you mean about the energy, joalo. It's an effort. There are those times, though when I feel it would be worth it.
Ping- you're so right. I'm not the same. The way I identify with people is not the same. My values, everything. It's taking me some time to figure it all out, never mind adapt to it.
Diane- you are exactly me. It's all superficial, but that superficial conversation is all I've got.
You asked if I have sblings, etc. I do. I have a mom (she's good to talk to, but busy and lives far away), my dad (he's getting old and like to be listened to- again, lives far away), my brother (not a talker, busy life, lives far away), my dear neice (lives far away, but she's great to talk to).
I was just thinking the other night that if the police knocked on my door and told me my husband got hurt at work, who would I call to watch the kids while I went to the hospital? I have no friends. My family is 2 hrs away.
Yes, I was worried about this. Does it make alot of sense? Of course not.
Thank you all so much for being here.
Posts: 797 | From New York | Registered: Feb 2008
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posted
I know I'd be more active if it weren't for the Lyme. Oh well, thank God for the internet. Thanks for this topic too. Lyme is so darn isolating.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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posted
We are supposed to meet my best and oldest friend this weekend in San Francisco. And I don't want to go. I rarely get to see her, I love her dearly, but I am so exhausted and confused that I know it would be too much for me. And on Monday I have to see my doctor there...that will take so much energy, too.
So, you see, you are not alone in this. We have all given up our social life, our friends and family. It is just too difficult to be sociable when you can't even remember what you said 5 seconds ago. And it's so hard to explain to non sufferers what you are enduring.
The best thing I have is the internet. I keep in touch with a few friends who also have TBD. We support one another.
I tell my local friends that I am going through a treatment program for a disease and that I will be up and about when it is completed. That seems to satisfy them.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
You are not alone. I am pretty isolated taking care of my daughter and I feel like I am living in an alternate universe. So when I am out in the real world, I have trouble relating to others.
Posts: 984 | From US | Registered: Dec 2007
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy, that was me. I don't know what happened. I just kinda let it go.
I guess it's time to go back. I wonder if I remember my password?
Funny lyme brain story: I tried to go onto lymechat once or twice. I couldn't find the cursor to type my comments- seriously. I just totally spazed out.
I withdraw into myself every once in awhile.
Now the weather is nice, the people are out, I recently had a couple of old friends from HS get in touch with me and it really hit me that I haven't had that closeness in a long time.
Posts: 797 | From New York | Registered: Feb 2008
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posted
Seriously. . I think people cross the street to avoid running into me. I hear you.
I'm glad we all have each other.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I haven't read what the others wrote. I moved here 4 years ago.
There are some people I would like to get to know more if it were not so exhausting.
A neighbor dropped by to talk this week and thankfully I kind was able to carry on a short conversation.
But, promptly feel asleep after wards it wore me out so.
It just takes too much out of me. I need what stamina I have to make sure I have food in the house and am able to fix a few simple meals each day.
And get Rosie out to toilet.
Anything beyond that is rare.
Even having someone in the room with me watching TV or a movie is too much.
I just keep thinking there will be a day when I am able to have a friend again.
I am thankful for those short conversations I can have now and then...even if it is just to say hi as I pass them.
I also am beginning to connect where I know the person from who is saying hi in some cases.
it took me about 10 min after the fact today to figure out where I knew the person who stopped to talk to Rosie today while I was at the post office.
Never did figure out how the person was that stopped and said hi to me on the way home. She was in a car and told me who she was and where she knew me from.
Still trying to figure out who she was...
Same with another lady that showed up at the apartments...she has told me who she is and where I know her from. The brain still can't seem to make the connection.
Tried to go a the movies with one lady here at the apartments over a year ago. I was surprised I was able to handle the movies. Went in my power chair and reclined with a blanket over me.
But, have yet to be able to go again. Really felt rude as the lady wanted to talk and I was just not up to it. I needed what reserves I had to just be there.
I went a long time being in lala land so for the time being just glad I can have short conversations now and then as I pass people in the halls on my own time.
Usually don't leave the apartment very much and I do know which people to stay out of the way as they will drain me quickly or give me too much info too fast for my brain to process it.
I even have times when I will throw up it is such a stress on the system.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I can't even have a conversation without being exhausted. I can't do things like golf now, even though I would love to. I used to try to do it anyway, but it would just leave me feeling much worse and exhausted for days.
The disease steals all my energy. People don't understand this, but I don't even want friends and a social life right now. Family is good, and I will reconnect with friends when I am well.
And people assume I must be depressed. I'm not, but just being around too many people overstimulates my already overstimulated brain. It's a hard concept for "normal" people to understand, but if I hadn't gone through this, I wouldn't understand either.
The computer is less stimulating, so I prefer it as a method of communication.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Since I can't go out much any more, I have made some online friends. I met some of them on another website around a mutual interest (other than Lyme). It's nice to be able to interact with them online on an equal basis, without the limitations of being sick. I am blessed not to have neuro symptoms, though, which I know makes it more difficult to interact at all.
When I am very fatigued, I find it easier to communicate by email than by chat, since I can take my time and answer when I'm feeling up to it.
Locally, I found some others who have Lyme and we started a support group, and met in person once already. Now I have people I can call on the phone and talk about Lyme, and they will understand. See if there is some kind of in-person support group near you. Even if you can't attend, you could call someone from there. They will understand your isolation and your need for short conversations.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I hear you. I don't have any close friends, either. I can't think of a thing to say to people.
A friend I haven't seen since 1984 wrote me a message on facebook. She said, "Call me! Here's my number!" This was two weeks ago and I've yet to call! The idea is scaring me and exhausting me.
Another friend from grade school tried to instant message me on facebook. I promptly turned off the computer! Is that sad or what???
The idea of trying to come up with a conversation without being "ready" is too much for me.
Sometimes I can't even type on Lymenet. It's too much energy to even do that much. I slept until 12:30 pm today and I'm already tired again!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
The one thing that going through an experience like TBD & tx leaves you knowing for sure (and it's a fact): Everyone is going to get their turn, someday, somehow. The Healthy might not understand you now, but they will someday...
When this understanding moved from my mere thought to the inner most part of me, it helped me a lot with the need to explain things and some with the isolation... Even after being in remission for a few years now, I know I'm forever changed.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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I have lost so many friends because I was not able to get in touch with them. I stopped working 2 years ago so I have lost so many coworkers who were close to me.
I am so exhausted that I dont have energy to make new friends. I also feel that I live in a different world with my baby.
My sister also lives faraway who is leading a very busy life.
But I hope it will get better.
Posts: 46 | From Maryland | Registered: Aug 2009
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Only then I get resentful that I don't have those connections, but I don't put forth the effort (e-gads, especially not with real live people!) to make and keep those connections. I don't have it in me or I don't know how anymore.
I do work, part time. They are a close knit group of people. They are all friends with each other. I don't have that friendship with anyone at work. They are coworkers that are very kind to me and I am kind to them, but there's that distance.
We all have the same story here, maybe some are just further along with the acceptance of it.
Thanks for the advice you've all offered.
Posts: 797 | From New York | Registered: Feb 2008
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posted
I like going to the lyme group in our area. There are so many nice people there and we try to help each other. People understand what others are going through so it is a place I am comfortable.
Posts: 140 | From Illinois | Registered: Jul 2009
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posted
I know exactly what you mean when you say there's always that distance.
I am HORRIBLE at making new friends. I just don't have the energy. Some have tried but to no avail. I never follow through with their suggestions or make any effort to get things rolling.
Lucky for me I have a handful of very close friends that I've know for forever. Two of them since highschool. They understand when I get into my antisocial mode.
But like everyone else has said, you are not alone.
And we still need to follow through with that phone call. !!!
Posts: 423 | From Upstate NY | Registered: May 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't have too many friends left and the thing is I don't seem to care that much.
The couple of friends I do have that don't have LD, don't understand lyme so I feel like I am just going through the motions of being a friend when I am with them. I try to enjoy an occassional lunch with them and act like I am normal. Honestly "normal" seems like another world to me right now.
I do have a couple of lymie friends but they moved away, so I don't really have anyone around me with lyme to be one on one with. It sort of feels like I am an alien in this world right now.
When I am with family, I enjoy our time together, but I know that they don't feel what I feel. Its kind of like being in a foreign country by yourself. You enjoy the scenary, but you definetly feel out of your zone.
I don't really remember what normal feels like. And friends just aren't that important right now.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Yes, totally get Lymelady's description. Thing is, this started for me early on, years before my recent diagnosis. Prior to that I was on the phone all the time, waiting for it to ring. I've struggled all these years in therapy, trying to understand why, psychologically, but never really finding an explanation for avoiding people, phone calls. If only I had realized...
Posts: 252 | From New York | Registered: Apr 2010
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I just ran into someone from my "old" life while out doing an errand and it freaked me out!
It is impossible for most people I know to understand what I have gone through, but I try to focus on the positive people I do have in my life.
I am a very social person, so it's hard to not be able to be around people much socially, but I figure that this is a time in my life to work on being comfortable in my own company, and when I am feeling up to it some fantastic people will come into my life as friends.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
It's the same for me too Carly.
My next phase of deeper seclusion is finding myself skimming anything I read. I don't know if it is TBI's or depression. I grope through materials like a radio station anymore. It's kinda like I can't focus, but more due to depression. Maybe looking for buzz words to feed my lack of interest....whatever the words may be.
I also have so little patience anymore. I somedays find myself in a rage over imbecile drivers and there is always someone coming when I need to pull out. Or, someone who won't let me into a lane. My latest pet peeve are dog owners themselves who need obedience school. Some let the leash out when your fast walking past them trying to excercise. This guys dog stood right in front of me and growled and I almost tripped over him. He thought it was a real hoot, as he also let the leash out to instigate. next time I will remind him that the length of the leash dictates the height of his dog, and I really like soccer.
I have no close friends either. Of the few i thought I had, one turned out to be a nurse and addicted to pain killers (to the extent of stealing them and loosing her job). It didn't help she contracted Stage 3 cervical cancer. Another who was also a nurse and married to an Interventional radiologist turned out to be an alcoholic that hid bottles in her plants. Let's not forget the hoarder who belongs on that pack rat show and who sleeps with both her son (age 7) and her daughter (age 10) in a queen bed while the husband sleeps in another room on the lower bunk bed. They have enough bedrooms, but they are full to the ceiling with sh^&*&^&*it.
So, I guess my personality attracts disabled people, and I'm beginning to think it's because I am too. So, yes I want a friend, but not what I've been getting cause there's a whole lot of hurt that comes with it.
I have become so phony too lately. I don't weep on anyone. Everyone has their own issues or they appear perfect. Either way, they don't want to hear me go off, and when I mention a brief lyme past, their face gets even more distorted.
Sorry, I am drifting into me. But, know you are in good company, but have lots of friends to share feelings with on lymenet. You may not be able to go backwards, esp'y if they can't relate to your diagnosis. So, try old friends, but also move forward. Just know that you may come across more then what you wanted.
Hugs,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I was so hesitant about posting this for some time. It's such a common thing with us. Lyme is lonely. It has changed us, I guess.
Yesterday morning I was taking my son to school when I ran into a woman I used to volunteer with at church. She at first was concerned with how I'd been feeling, etc.
We spoke about the tick she recently found on her and how she's pursued treatment with her doctor all because of knowing what has happened with me. If she hadn't known of my experience, she said, she wouldn't have thought anything of it.
Then she said I never see you anymore, ever . What have you been doing with yourself?
My response? "Yeah" Then we both laughed at me. I can only guess what she was thinking.
So, not quite 100% out of the loop, but not really in it, either.
And Topaz, I thought the same thing yesterday. That phone call is overdue!
Posts: 797 | From New York | Registered: Feb 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
So, thankful for the ability to be on line and have on line lyme friends.
Much more do able for me to communicate on line while I lay in bed.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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This is what I do only when I'm up for it, to connect with well people - I tell them I don't want to see happen to them what's happened to us - ie, Lyme and co's -
I keep the focus on them and their concerns - and in that way, I am able to connect fine with well people and many tell me thank you -
we know something they don't - that they can get this.
At the very least, I discuss tick repellents for them and their pets.
Later on in the conversation, sometimes they become more curious about me then and ask me questions. I'd say this comes after it's made an impression on them that this is something serious to know about.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Good advice, Robin. I've been stumbling around that approach. Still kinda clumsy, I think. It takes some practice.
And Kam, you're so right about the internet. I love the virtual journeys you sometimes take us on!
Posts: 797 | From New York | Registered: Feb 2008
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posted
Yeah, Carly - it takes practice - the main question is, are we connecting with their concerns? The more we do that, the more real it gets for them.
Then as I mentioned, at that point, some ask me about me. So then I feel more present in the relationship.
We need to find a way to make it understandable. Best way I've found is to say: you could get this too...and here's some ways to protect.
And you know how we can be invisibly disabled - once in awhile, someone surprises me by saying they've had Those Symptoms for X number of years, and I wouldn't have known it, to look at them...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Ya - I have lost many of my friends over the years. They kept asking me to do things but I feel like crap most of the time so I don't end up going. I look ok so people think you're just faking stuff. It's very frustrating.
Or, to make things easier on myself I just say no all the time. If you say yes, and then cancel at the last minute people don't understand that you can feel fine one moment and one minute later you're really tired or in pain.
Oh well - recovery is the first step - but in the mean time - keep up the faith!!
-------------------- I am not a doctor and am only expressing my opinions...please do not take this as medical advice. Posts: 44 | From US | Registered: Jun 2009
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posted
I am curious if the lack of friends for anyone has to do with simply being too ill to interact, or getting so sick/crashing so bad from interaction that it has become impossible to have real-time friends?
This is the situation for me, though I can also relate to what everyone is saying about being in an alternate reality that nobody understands. At this point, I feel so devastated all the time it's hard to know what to say to anyone.
For me, it's very extreme -- a ten minute interaction with a person can easily and literally set me back for a week, crashing, so much sicker. The slightest things do me in so profoundly I've had to restrict everything in my life, including human interaction, to almost zero. I am just curious if anyone else has this -- in my case it's largely ME/CFIDS, but Lyme has made it worse.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Personaly I think they (friends)cut themselves off they dont want to be around sick people ie lyme disease,& I think they fear lyme like its death sentance. So they dont want to be around you.
And the biggest one would be we are such downers spoiling there happy little life?
hahaha Well screw them
Theyll pay attention when they or there loved ones get it then they will bug you to death about what to do.
Sad But dont bye into that always know that God is in control.
Grace and healing to you all. Remember not to stress yourself take care of yourself then youll be able to help others and get back into Life the way it should be.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
lymecfscms
I thought I was doing well the other day until I had a 5 min, small chit chat conversation....
...then the brain swelled or whatever it does.
>...i tried vegging for a while
that didn't work
so took a couple of excedrin...that worked thankfully..
..but in the past the body and brain have been so tasked that I will toss my cookies and be out of it anywhere from one to 3 days...
...when someone comes around me with perfume on that also shuts me down
So, in response to your question above...yes..both reasons.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
My friends have come and gone. Today I switched my phone over and was noticing how few numbers I have in my phone. Don't really have much to talk about with my friends they don't want to hear about this horrible journey I have been on.
It will get better:-)
Posts: 26 | From Michigan | Registered: Mar 2010
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