It really never hit me how much Lyme has affected my social life, my relationships, and my group of friends until today.
I think its a side-effect of the disease that is under-comprehended.
I had to schedule some oral surgery today and was told that I would need somebody to be there with me to drive me home (hour and a half, one way). Seems, I am alone. It is a really sucky feeling not to have anybody, no 'other half', and no close friends left that would help.
Sure, I have acquaintances, and the light social friends (the sort if they ask how you are doing, you can't tell them the truth), but lyme and time has effectively erased any of my good friends that could could ask favors from.
I eventually quit church due to the fact that many felt that since I wasn't getting well, somehow I wasn't "right" with the Lord!
As for relatives, I have none in the area. After being engaged and a 6 year relationship, last year my fiancee cheated and that was the end of that.
How I would so like some normal human interaction again, but once your limited with lyme, its like sitting still and watching the world fly by.
Please don't take the above as a post that I'm depressed or such. I'm not. It's just a rant more or less that only fellow lymies could comprehend. That's why I sharing it here. If I had the strength, I'd want to lay on the floor and kick and pound, lol.
Posted by chardbokchoy (Member # 45383) on :
I know how you feel about church; I rarely go anymore, either. I just feel out of it there. One day I will try to go back or else find another group that "fits" better.
Not many people, even religious people, have the patience to deal with chronically ill individuals, unfortunately.
Have you tried any local Lyme support groups?
I'm blessed to have family here and close by. I can't imagine not having that support to help. Maybe you could move closer to where your family is?
Take care, and know that you have friends with Lyme who are online who understand!
Good night and God be with you!
Posted by droid1226 (Member # 34930) on :
I can relate to the other half leaving, being accused of not being religious enough, and complete isolation.
There were 9 months I didn't leave my apt at all. It's a shame cause I've met a lot of cool sick people. But there are plenty of people who also physically have others around but couldn't be lonelier.
I just turned 37 and have watched every one of my friends and family move on with their lives. I'm watching it like it's on TV. I hear them having kids & divorces when I never even knew they got married.
I love the question "Hey, how've you been?"
You're definitely not alone.
Posted by poppy (Member # 5355) on :
And you can have relatives close by and never get asked how you are or check on you. Not be there when you need a ride after a medical procedure, etc.
I have found it is better to fake it, if you can, and join groups with similar interests, never tell anyone your health problems. That is only possible if you get to a certain stage, not if you are bedridden or housebound. I was certainly not able to do this for a long period. Going downhill now, got to do something to stay functional.
Anyway, you have a lot of company here.
Posted by k84 (Member # 32738) on :
Thanks for the responses.
Never thought I'd be 31 and at this point in my life.
It helps feeling that I'm not the only one that lyme has done this to. You know its even the little things in life that I miss of human interaction, like getting a text message from someone just saying 'hey'.
As for Lyme support groups, there are none remotely around here.
I'm in a rural area, on the old inherited family farm, 5 miles from town that is population 1,500 and the county seat. There is not much socialization to do here that is productive even if one is well. It's something along the lines of the older country song, "howl at the moon, shoot out the lights, small town Saturday night".
Posted by kam (Member # 3410) on :
Yep. Not able to read what others wrote nor able to read all you wrote due to lyme.
But, Yep. I had a good friend in my old town who helped me.
Since moving to AZ in 2005, nada.
REcently a lady has been getting me groceries and when I am able we try and go for a short walk wiht the dogs
She is someone I can be around thankfully but I drive my car and she drives her car to where ever we will be walking.
Then I am able to be on my feet maybe 5 or 10 or 15 or 20 min...sometimes it feels like it wasn't such a good idea and other times i do well.
She doens't get the sound thing so I carry ear plugs with me but that did nto work out well last time..I was still getting the sound of her voice talking to her dog.
So, next time I will bring ear protection muffs with me.
Problem with these things is it increaseds the sound of my foot steps.
But, on average we only go once a week for 10 min so it is good to have a bit of company.
First time since I moved here so went a long time without anyone I could be around.
As far as someone driving me to the LLMD or wherever?
That was a big issue too. Recently the senior center drove me down the hill twice to the LLMD's office.
But, think they did that because they still had funds left over from when we had a fire at the apartments and they collected funds to help us while at the hotel.
Next time they said others would need to drive me but they had a lady lined up. Problem is I am not so sure about this lady...we shall see how it goes.
RE: Churches...not able to attend church...would need to lie down and taking in what was being said would probably last 5 or 10 min so have yet to figure out how to attend even when health is doing well enough to give it a try.
Hoping someone comes in your life that will help you. I know it is a rare thing.
I have sent emails to churches re: needing a ride down the hill which is about an hour and a half away for doctor's visit.
I had one lady who did help with getting the lift on my car and taking me to the doc.
Then, I was told by a mechanic that something on the front of my car has a 50/50 chance of breaking...something that I had paid to have replaced a long time ago but just now finding out it was not replaced. Not good.
Even told by place that replaced the item that it needed to be replaced when i went back for an oil change.
Owner of shop said the mechanic got it wrong and i was too sick to follow thru on things and take it to another shop at the time to double check.
So, yes...getting help would help.
I recently hired help so we shall see how that goes health wise and financially.
ONly 4 hours a month but I am sure if she is good it will make a big difference.
As far as driving me places. We have not discussed this yet.
I had it in mind to turn an abandoned boys ranch to a healing ranch when I first moved here for those with lyme disease to live while they were healing.
Recently went out to the ranch and found it had been bull dozed. So sad. But, the idea is still a good one and needed.
WE do have a home in the area that has a full time caregive ron site. It is an old home that was turned into a place for people to live.
They had transportation at one time but i haven't seen the van there lately.
I think it is going out of business.
But, even something like that might be good or not.
There were 3 bedrooms with one bed only and I think 2 bedrooms with two twin beds in them.
A back yard and chickens were supposed to be added but the city recently passed a law for no chickens in city limits.
I can not imagine a house with several people with lyme disease in it.
But, for some reason I can imagine a place in the country where those that are able can get out to feed chickens or brush horses or ride horses or take care of goat's etc.
Different housing. A place where those can come and eat like a chuck house when we are welll enough or have food brought to us when we are not well enough
Posted by Annie C (Member # 14) on :
I stand in agreement with what everyone has said to the letter. Lyme isolates you to a point of losing all social skills. If and when I get to go out into public I a mess.
I don't know how to behave. I've always beeen a loud happy joke telling get there early leave late person now I'm doing well if i acutally get dressed. And right now I doont even care about all the typos.
I hate being alone. Im with myself all the live long day. E I E I O...
So heres a a great Joke. Do you know why they never made made a 2nd Yogi Bear???? Cuz they mad a BooBoo
Ha ha I know yout laughing now.
Ive always thought that Lymies should get housing on a hufe chunk of land. And take care of each other. To a point that is. And to each his own as well.
Life at 60 is scary cuz my family live over 2000 miles away. And my Lyme Dr is 220 miles One Way. Its all crazy and its all relative.
Who knows what the Gov will do aloong with the CDC I know and I pray they well at least some of them are here everyday reading about our not so happy lives.
So if you are reading this. Please just shoot with buckshot full of Antibiotics. Please I'll even stand still. Cuz I certainly cant run but I can sit daown. Ill be wearing Lyme Green so easier to find.
If you cant help us then join us as we walk like turtles through mud... We all misss our lives before Lyme. Mostly We Miss Ourselves and all the fun and hard times of just being human.
I can rant and rant for ever. But I might not live long enough to do so. SOOO Im doing it now.
Posted by Lymetoo (Member # 743) on :
k84.. Sorry to hear that you feel so isolated. I would definitely feel that way if I didn't feel welcome at church or was stuck in a really small town.
Thankfully, I've been able to attend church all of the years whether I've been ill or well.. many more years of ill than well. Not sure what I would do without my church family.
A few years ago I felt the need for a close friend.. like you said .. not just an acquaintance. So I prayed for one. Now I have several!
So try that! I knew so many people, but no one to really call FRIEND .. someone I could confide in and someone who would accept me as I am.
I hope and pray everything gets better for you .. that each day will bring you new joys and new things to be grateful for.
Posted by MannaMe (Member # 33330) on :
For those who cannot go to church, can you call in and listen to the sermon at your church?
My husband hasn't been able to go to church, but he does call in and listen. He can still be fed spiritually even if he is at home.
Lymetoo, I think we will start praying for friends that accept us as we are also!
Posted by Lymetoo (Member # 743) on :
It sure worked, Manna!! I have three really close friends now. Such an answer to prayer!
Our church records each service .. so K84 may also be able to pick up a recording at her church.
Posted by LisaK (Member # 41384) on :
I think at any age an illness like this can make you an island. even if you have people around you.... it still may feel lonely.
I don't have many for myself, but I am married. I have found that if my husband is busy and can't pick me up or whatever, I have called aquaintances in the past and they were only too happy to help.
I think my problem is reaching out more than others not reaching in, but on most lyme days it is hard to admit that as I am the type to have a pity party for myself.
this is a hard thing. super hard.
I have come to grips with my reality that this is it, and in the now I must live.
I find more comfort in that than thinking about the future or what if things were different, like IF my siblings called or visited, or IF my best friend actually had time for me, or IF there was someone to listen when *I* feel like talking.
all we can do is try. try and do what we can to make our lives count- no matter who is in it with us. this is just my own opinion.
hang in there.
Posted by linky123 (Member # 19974) on :
If I had it to do over again, I would not have gone 'public' with this disease.
People have no patience with it and most are offended for whatever reason.
I guess if we aren't meeting everyone's expectations, which becomes impossible when we are so sick, then they get ticked off.
There is a small group at one of the churches here for people with chronic illnesses. I think that is a great concept. I have not joined, but might give it a try.
Posted by LisaK (Member # 41384) on :
linky, that is great about that group! I wish we had one here. you should give it a try for sure. the worst thing that could happen is you don't go back, right?
maybe there is some group for that near me.... I was looking for lyme, but maybe a general group for chronics would be available. I hope so. I need it.
Posted by linky123 (Member # 19974) on :
Lisa, it probably wouldn't take much to start your own group, at church if you attend one, or maybe in your community if you don't attend church...
There are so many people struggling with chronic disease, not just lyme, that would benefit from a group like this.
Posted by MannaMe (Member # 33330) on :
linky, when you try that small group for chronically ill people, let us know how it went.
Maybe more of us could get our own groups started locally. Wonder what they do at their meetings?
Posted by linky123 (Member # 19974) on :
MannaMe, I will let you know.
I can give the church a call to see what they do.
Posted by LisaK (Member # 41384) on :
yes, I would like to know also. I mean, if everyone's symptoms are varied then that would make such a diverse group, or maybe they focus on the mental /emotional hardships more than daily physical struggles. ?
Posted by kam (Member # 3410) on :
Hoping to read what others wrote when able.
Want to go tent camping soon. Would like to have company. But, need the quiet. Do not do well when others are with me so most likely will go by myself..with Rosie of course...service dog.
CAmping to me is laying on the cot in the tent vs laying in bed at the apartment
Been feeling lonely lately. But, then neighbor knocked on door to let me know she liked the comic I printed out and posted on a clipboard on the hallway door to my apartment.
Just answering the door and having the short conversation made me dislike the neighbors.
Seh is one that keeps asking when she can go for a ride with me to toilet Rosie again.
When I first moved here health was doing better and I took her on a few outings with us...but quickly learned it made my health worse so stopped having her come with me.
She still doesn't get it that my health is not strong enough to have her come too so continues to remind me she wants to go with us no matter how many times I tell her my health can not handle it yet.
Felt lonely so went out with Rosie via the power chair where neighbors sit and smoke...that doeesnt' work out well either as it takes too much out of me to listen to what they ahve to say and most of the time it is things not worth listening too.
So, the search continues for a local friend I can be around without it making my health worse.
Posted by kam (Member # 3410) on :
Considered finding a deaf friend ...I heard there is a guy who is deaf who comes to the lunches at the senior center and who signs.
But, 1. I do not have the health to go to the senior lunches.
2. I really doubt my abiltiy to take in what he is signing is still not working...but would like to give it a try
Posted by kam (Member # 3410) on :
Read a few of the posts. I did suggest to a pastor about having a group for the chronically ill.
He thought it was a good idea as his wife struggled with a chronically ill condition.
But, that was the last i heard of it and now can not even recall which church I sent an email too.
Could try again. But, with me...I can only last about 5 or 10 min and then would need to leave and that is if it is at 7 am in the morning.
By 9 am I am pretty much bedridden and need to have quiet.
Posted by linky123 (Member # 19974) on :
This is the info on the church website:
1st and 3rd Sunday of Each Month This group provides Christ-centered connection, encouragement, and care to those managing a chronic illness. Focusing on our hope in Christ instead of our physical limitations. Join us as we share our journey of managing a chronic illness together.
Posted by LisaK (Member # 41384) on :
that sounds nice linky.
Posted by linky123 (Member # 19974) on :
Also, this doesn't necessarily have to be church-related.
Just forming a group to help one another with every day life.
On my good days, I could help out someone else with errands, groceries, driving to and from appts. etc.
On my bad days, others could reciprocate.
Just being able to pick up the phone to talk to someone who understands would be a big deal.
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)