phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Last night I thought how I would love to have a 4th cookout like we use to .. Knowing I am not up to entertaining but then it hit me who would I invite.
I have no friends anymore, no calls, no visits.. Have I become a hermit?
Other than the small family there is no one, I was always a people person. Now how do you find and keep friends in the Lyme world when you aren't able to get out and go and do with others.
I am thankful for my internet friends but how I would love to have them in person.
MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Hi phyl,
You know what? I like people, but when in the past we have had company, I was never really the talker...I listened to others chat. I can honestly say I do not miss the alcohol and the loudness of a get together.
How do we find and keep friends, you ask. Well I have a one dear friend that has not left my side, I have neighbors that understand when I get up and leave. They continue to invite me over and it is my choice to partake or not...and they understand.
I also go to bible study and church when able. Do you have any neighbors where you live that might would invite?
We have a disease that trys and does at times take over...but we still must continue to live. Even if you have no friends...you still have a small family that understands and you can make some beautiful memories with them. You have a fun day, happy fourth to you.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
| IP: Logged |
posted
Yeah, I don't have any friend anymore, either. I have a few aquaintences at work, my significant other, and my daughter, but that's it. People in general really stress me out. My mood swings cause explosive reactions at times which leads to being very embarrassed afterwards which then lead to my avoiding as many social situations as possible.
I can picture a Lyme group gathering where the first door you approach asks how you're feeling:
- if you're feeling angry, please use door #1 - if you're feeling sad, please use door #2 - etc.
At that point you end up in a group of people that don't stress you out further. AND you can switch groups if your mood changes and you need to escape. PLUS you're with people who understand when you need to flee and don't take it personally :-)
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Friends, are folks that would be family by your choice. Family are people that were born within your world, that shared events and struggles with life,
Can you Name Jesus's friends..?
I to have become a hermit, now, that I have withdrawn from the pride and greed and competition of others, to seek being humble and true careing.
New friends are in our future, as the old friends fall away from our new life with this desease.. its rather OK with me for the time being, I can't handle the stress they dump on me like I use to, so, peacefully I rest , focused on Lyme, and Good health...
This site has brought friends from all across the world to my finger tips.. Counting my small Blessing and giving Glory to the Lord. Please accept my invitation to enjoy the 4th in harmony with all affected by Lyme, I will take door number 3, The God of Peace.. equip you in every good thing to do His Will.. Hebrews 13;20/21 we are never alone, Jesus would enjoy a sit and tell, at your dinner table.. lots of Love Wayne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I know exactly how you feel.
Friends that I've had for years seem to have disappeared.
But when one door closes, another one opens.
I have found a new circle of friends - all of us have something in common. We are all going through this together.
We communicate every day to check on each other. Offer cheers on our good days, support on the bad ones.
We have common goals - to get well. To see our children get well and stay well.
I have met some wonderful people on this board. People that I will always cherish and appreciate.
My lyme friends "get it" when no one else does. I enjoy the fact that there is never an explanation needed.
Yes, it's too bad that some of us are far away from each other, but with technology, we can still be close.
None of us are alone - far apart in distance - but not alone.
Posts: 1408 | From Tx | Registered: Nov 2009
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read what others posted. But, thinking I need a friend with limits.
Since moving here in 2005, I have yet to develope a friend with limits.
I am doing well enough that I can go out in my power chair and have a short conversation with a neighbor at times.
I live in an apartment complex. I have learned there are neighbors that I need to cruise on by and others I can maybe stop and listen to one to 3 sentences.
I need someone who is more of a doer than a talker and lives in the moment due to the way my brain works.
I need to avoid those who talk about others or give me too much information at one time. KISS
It would be good to have a friend that drives and likes the outdoors.
And that I feel safe with if my brain and body goes and I need to get home pronto or into a quiet cool place to lay down.
I have tried attending Bible studies here at the apartment and find I last about 5 or 10 min and then need to go...I think I have attended 3 since 2007 when I moved into this complex.
At least my brain is able to recognize some of my neighbors and recall a few of their names...but usually not until a few days later. HA!
I have one person I have considered going with for one of my 5 min walks at an asphalt paved mesa trail.
Place to sit and rest after the 5 min before walking back to the car.
But, since i never know when my health will be up to it and am not able to use the phone....it has yet to happen.
Most of the time, I am doing well to drive the 3 miles out of town and walk on a forest trail for 5 min, rest and walk back.
I do see regulars on this trail. But, if they stop and want me to listen to them or talk...it is too much.
It takes all I have just to be there.
So, I need a friend with limits.
It is too long to go without any friends. 2005 until now. Not good.
There is another lady here who is in a power chair and has a service dog in training.
AT times, i think it would be fun to go around the block with her.
But, brain can't handle that. Even if I were able to handle it at the time...it woudl take me days to recover.
All my strength and energy and brain power goes towards making sure i eat something 3 times a day.
Can't sit up and eat either. need to recline.
I am able to watch TV and eat most of the time now...this is an improvement.
Before the brain couldn't handle that...needed quiet while I ate.
There is a barbeque here at the apartments this evening. Then the plan is to watch the fire works from the parking lot that are happening down the street about a mile at the man made lake.
I was able to go for about 5 or 10 min last year...but had my reclining power chair with leg lifts.
STayed long enough to have some water and aske a stupid question to the owner/invester...brain was in a big fog.
visit set me back a few days.
Not sure I want to try it this evening or not.
Reclining power chair with leg lifts is not working...needs batteries I guess.
When I first moved to the apartments, I went down the street to the lake.
I timed it very well. I went right when teh fire works show started.
Everyone was quiet and not moving. I just cruised down and back.
health is not doing well enough to cruise the mile down to the lake now in the power chair.
Might consider going out into the parking lot after the fire works show starts.
But, the issue of not havign the reclining power chair with leg lifts is an obstacle to over come.
We will...see.
Can't imagine doing well enough to be able to talk to others and not having a pleasant person to talk with.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Yes, my friends are online or at church. Without church friends I would go nuts. Without my online friends I would go nuts.
I'm a people person too .. bigtime.
hope you can find helpful connections, phyl!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I have come to accept that people come in and out of my life for a reason. Some are there for life others are just for the season. I don't force it.
Since I got Lyme and Co I have weeded out a lot of so called friends, you know the kind that said "Call me anytime if you ever needed anything"... and when you call they have 101 reasons why they can't help. I just don't have enough time and energy to waste with those kinds of friends.
What I have left are a handful of great friends who instead of telling me to call when I need help, they come to me, bringing food or cook a meal for the family. They plan events around my limitations and always come to pick me up. I am grateful and blessed!
I pray that God will bring people into your life to help you during your time of need.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
posted
Phyl, do you have any Lyme support groups nearby that you could go to? I find it such a relief not to have to explain it all to someone - they just get it, and sometimes can be social too!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Phyl...when I had my health and had more funds, I use to like to go the hallmark card shop and pick out a card that reminded me of someone and send it to them.
I'd still like to do this but find it rare I have the health to do so.
it was a fun thing for me. Might give it a try. Might be a fun thing for you.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
[QUOTE]Originally posted by scorpiogirl: Since I got Lyme and Co I have weeded out a lot of so called friends, you know the kind that said "Call me anytime if you ever needed anything"... and when you call they have 101 reasons why they can't help. I just don't have enough time and energy to waste with those kinds of friends.
Exactly what I am going through right now. I don't want to waste my energy on superficial people.
I am feeling discouraged trying to make new friends as the majority of people seem to be so incredibly self absorbed. Since lyme my standards have changed. Are there any deep people out there other than us? Sadly they seem few and far between.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Oh yes the migrating multitude that left when I got sick. Sick with something they know nothing about, which made it harder for all. I am down to the three faithful. I can call anytime. I think part of me tried so hard to hold onto others, that I would have done better to let them go sooner and value the blessings I have. Phyl, if you can send a note to someone who might be a friend or rekindle a friendship. I find asking about others gets the conversation moving. Unless they are very close, I don't tell all the fun details of my life. At the end of the day, loneliness is hard-I will pray for you.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
posted
I know the feeling. I am often lonely, however there are times I get invited to parties or to lunch and when the time comes, I feel too sick or fatigued to attend. It really stinks.
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
God reason for giving us friends....family!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
This thread has reminded me of another thought I had when I moved to the apartment complex for senior and disabled.
I thought I would put a gift outside the door of a nieghbor.
I have yet to be able to do this. Still hope to be able to do this.
Thought I would leave a note saying it was from Rosie, my service dog.
Then, thought I would just leave a note not saying who it was from..the apartment phatom??
I like that idea better. Just need to come up with a name.
and had planned to put on the note that the option of keeping the gift or passing it on to a neighbor
health just hasn't been there yet. But, the need to connect to others is.
I do leave a msg on my clip board on the wall outside my hallway door.
A neighbor commented on how they enjoy stopping to see what I have left.
When the elevators were down here I posted a pic of a zip line with a note about can't use the elevators....try the apartment zip line
Just my way to connect with others as verbally connecting with others is usually out.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
I know how you feel. I remind myself of that each day. Keep trying and smiling at people. I carry on conversations with people everywhere, but it never really goes beyond that. May you find a connection soon! climber
Posts: 108 | From Connecticut | Registered: Jun 2010
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
katiebobatie...I think your idea of joining a lyme support group is sterling!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
i slept through the support group meeting i had been planning to attend
they don't meet for another month... *sigh*
i'm definitely going though!!
Posts: 442 | From usa | Registered: Oct 2010
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Katiebobatie...awww dang it! At least you didn't fall asleep AT the support group. Try again next month!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Find a local church and jump right in. There are always events that you can participate or volunteer. In fact, I'm heading out of town for a week for our Vacation Bible Study... yes I'm crippled and all but Hubby is dropping me off at my friend's house and she'll take me to church every day along w/ all our kids of course. I have kitchen duty but they will give me a chair so I won't have to stand. It's a great distraction and I love seeing the new faces of the children coming in each year. Plus both of my best friends are their so we'll have a wonderful time serving!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
katiebobatie....sometimes it is small steps..or in this case...just getting there is a big step
It is Ok that you fell asleep
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I was able to find some birthday cards I had around the apartment and get the names of the 3 neighbors that are having birthday's or had them and get the cards on their door.
Got the notice on the 1st. Able to get the cards to the people yesterday due to having to wait until health worked well enough.
had one of the neighbors walk out on the balcony while i was coming in my front door.
She waved and said thanks. I had no idea at the time what she was talkign about and was very short on patience due to feeling so lousy.
I was in my power chair. I just waved back and kept my impatience to myself. not her fault.
Two days later realized what she was talkign about. It was her birthday and I was too sick to put two and two together.
[ 07-11-2011, 12:48 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
i have been trying to get involved in a church here ever since i moved to the area...
i went a few weeks ago at the same time advertised on the website, yet nobody was there! i was so bummed... it wasn't easy for me to get ready!
the next time weekend i tried to go, i was denied pain medicine from wal-greens, and literally could not move from hurting so badly
last week i slept until 6pm, and forgot it was wednesday.
my problem is i HAVE to go to an evening service, and there aren't as many as i thought there would be! i just cannot do mornings :/
things keep getting in the way i am hoping this wednesday works out!
another thing that sucks is i get SO sick everytime i'm in the car, and i'm already so nauseated as it is. blah!
Posts: 442 | From usa | Registered: Oct 2010
| IP: Logged |
posted
This was a great post. It made me feel so much better.
I don't have any friends either, but I have great neighbours. Sometimes i just chat over the fence with them, on average, once or twice per month, and that is fine.
Relatives can be a pain anyways, so it is kinda nice to be a hermit at times, and at other times sad.
You all sound just like me.
Thanks for writing those posts!
I just read a post about someone who was better after two years, and basically seemed to tell us that we are not better because we are on this board too much, too negative, and should just move on with life.
I did that for 2 years, and that is what made me get here in the first place.
This is one of my favorite posts.
THanks.
If anyone is lonely and needs to PM anyone, feel free to PM me anytime!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
posted
This post made me feel better too. I see I'm not alone.
I do not really have anyone to talk to besides my husband and mother either.
I had one very close girlfriend that lives out of state, and since this happened to me, we've lost contact completely. She's busy with her own life, and like a lot of other people, she just doesn't "get" this illness.
Part of the problem is that her father had lyme several years ago and was lucky enough to get well on a couple of months of Doxy from his PCP. He is fine now and has been for years. So, she just doesn't get how sick I am. We haven't spoken in months.
It hurts that she doesn't bother to even try to understand what is going on with me and how I feel. It surprises me how others (especially family members) don't want to bother learning anything about this illness so they can better understand what I'm going through. Maybe I was expecting too much out of people. I have a feeling they would change their tune if it ever happened to them.
It really sucks, but sometimes bad circumstances in life have a way of showing us who our true friends are. I guess she really wasn't a true friend.
I feel very lonely much of the time, I don't feel like I'm the same person that I was even a year ago. It's hard. I feel lonely yet quite anti-social most of the time.
So, I really do understand how all of you feel. I don't have friends either. I appreciate this post, it feels good to vent a little.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have always been a loner, anti-social, misanthrope but lyme has made me worse.
the constant chatter of people talking grates on my nerves and gives me a headache. restaurants with loud music drives me crazy...
screaming kids put me in pain.
so even being around other people is simply painful and not something i enjoy.
at least on a cruise i can hide on the balcony and don't have to be around people all that much. and i stay home alot. it's quiet, i can listen to music or watch the tv i want and be left alone.
i've gotten much worse...
not that i don't like ya'll.....lol...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
i move around alot, so i left lots of friends behind.
i am great about calling people and staying in touch, but apparently i pick friends who don't care to check in with me. i lose touch with all of them.
when i lived in california, i thought i finally made 2 friends that would last.
one even cried when i moved, so i thought for sure she'd stay in touch.
i haven't talked to her in almost a year now
sometimes experiences like this makes me feel like i don't even want to make new friends, because they ALWAYS forget about me.
i am the type of person who always calls to check on people when i know something hard is going on in their life.
it would make my day if once in a while a friend would call and ask how i'm doing. it never happens though.
i only communicate with my closest friends by email. i wish they could just pick up the phone and actually have a conversation with me. emails are just not the same!
i feel so lonely and cut off from the rest of the world... i really need to hear someone's voice!
plus writing emails is SO stressful to me because of the brainfog :/
also, i totally understand having a family that doesn't understand and doesn't try to.
i used to be so close to my granny, but seeing how little she cares about my illness has really hurt me, and i just don't call her anymore.
when i do call, and tell her i'm feeling bad, she tells my mom "she sounded really good on the phone!"
it's like she doesn't believe me or take me seriously at all
a lot of people don't believe me or take me seriously, and that's fine... but it's really hurtful when it's someone who means a lot to you!
also, i can totally relate to people thinking you should be fine, because they knew someone with lyme who got better right away.
lots of people have said to me "wow, everyone i know with lyme got better once they started meds... it's weird you're still sick."
back in the day though, people didn't have all the co-infections we have now. they probably weren't as sick!
also, people don't understand that the longer it takes you to get a diagnosis, the harder it is and the longer it takes to get better.
i'm the same way... super lonely, yet anti-social most of the time. it really sucks!
Posts: 442 | From usa | Registered: Oct 2010
| IP: Logged |
i used to have great neighbors too. it really made a difference!
i moved away though. i really miss having someone to talk to when i would go outside. it was so nice. we were like a little community!
i know the post you are talking about. makes me wonder how sick this suddenly positive person was to begin with.
like everyone else in this post, i am here because i don't have the support i need offline to beat this disease!
it's not good to be completely alone and shut off from the rest of the world.
we NEED to feel like someone else understands for the sake of our mental health!
being here actually puts me in a more positive mood, because it makes me realize i'm not completely alone!
without this board, i feel like i am the only person going through this, and that's a terrible feeling!
Posts: 442 | From usa | Registered: Oct 2010
| IP: Logged |
posted
This is just so sad to read. It breaks my heart to hear how people are feeling so lonely on top of dealing with this horrible disease.
It's just not right! I am new to this disease so feeling bad everyday is also new and I know I have alot of tough times ahead too.
I was always the care taker type so this is different for me to be the one needing care from others. My best friend (my husband) is there for me - thank God for him.
So far I do not feel I have lost any friends but then again I am not going out with them either because I do not feel good.
Nobody has beat down my doors bringing any meals or anything tho - wouldn't that be a nice gesture sometimes?
I was one of them that always made sure I called the friend who was ill or having difficulties. I also felt that I should do what I would want them to do. Many times it is never reciprocated tho. It's just how people are I guess.
If there is any lonely person on here that needs to talk, please feel free to pm me. Nobody should feel alone especially dealing with this crap.
And everybody should remember how important your input is on this disease especially for the new ones like myself that have recently come on this board to learn to deal with it.
God Bless you all and I will keep you all in my prayers
Posts: 33 | From PA | Registered: Jul 2011
| 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!
![[group hug]](graemlins/grouphug.gif)
we are never alone, Jesus would enjoy a sit and tell, at your dinner table..
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic