This phrase has been used by many over the years, but it truly sums up my state of mind. There comes a point when so many things in life diverge at one point, that one really questions how you got there and how you ever get back. In the grand picture, Lyme is to blame for how I got here.
Many people with Lyme have a limit to being able to interact with others. Physically, that does happen to me, but unlike some that can retreat under the covers and find solace, I still enjoy, rather need, social interaction, and I don’t have any anymore.
So many recent events have come together at a similar time that I have truly lost all my friends; in real life, or online. I’m a social being and for the first time in my life I could drop off the face of the earth and it wouldn’t be noticed. I’m so alone.
Most people that have not been affected by this disease would never understand: Lyme isn’t just a disease, it becomes one’s life.
I’m only 33. It now has been 14 years now I’ve had Lyme and Co’s, though it wasn’t until 6 years ago I was diagnosed – before that I just had the generic “chronic fatigue” label thrown at me.
19 and in college on full scholarship, I got very very sick following some tick bites haying that summer on the farm.
Indeed, so sick I ended up in the hospital and my scholarship was revoked because I did not maintain “constant enrollment”. I had maintained a 4.0 GPA. Not like being able to go back to college ever mattered as I’ve been sick ever since.
Other then some cousins, I have almost no living relatives except for my [now elderly] Father. I was a late in life “gift” to my parents, and am an only child.
My parents had been married since 1964, but I didn’t come along until 20 years later. My mother died two days before my 17th Birthday.
Throughout my journey, I always tried to look on the things I still did have in life. That served me well through the years, but now most all those things have moved on – and I’m still here with Lyme and gasping for air with Babesia.
I held my head above water on the social interaction front until 2015, then it’s been a rapid slide downhill from there.
The first big hit was my longtime girlfriend, and fiancée, who after being together 7 years, went and cheated on me. And like the stereotypical dumb guy, I was the last to know.
Really bites when you find out from a third party that your significant other was flaunting it on Facebook about being with another guy (I do not participate in FB). We lived together, so I ended up back on the very run down old farm with my elderly Father.
Yet, to make matters worse, a year after she left, I received a letter from the county health department that I should be tested for HIV….
seems that she likely picked it up when she went on some benders after she left, and when she tested positive, I got listed as a “past partner”. Thankfully, I tested negative, but ****, it’s left me with some deep emotional scars.
The Second hit had to be the drama of loosing the few distant relatives I had (other then my Father), either to drugs, prison, or death. Moreover disheartening was the drama they caused.
The worst was the social stigma in a rural small town when my 27 year old cousin Ashley shot her boyfriend over a few grams. That was fodder of the decade for the local newspaper. She now is doing life without parole after being convicted.
I had nothing to do with my cousin, but no longer am I “me”, I now have the stigma of being cousin of that crazy woman to those locally in the small town of 1500.
Locally I cannot participate in Church. Yes, I’m a believer, but in the rural small area, it is also small minded and I refuse to be part of a congregation whose pastor who says that my illness [Lyme] is caused by me not trying hard enough in my relationship with the Lord.
As I approached my early 30’s all my friends and acquaintances started having lives of their own and moving away. They all gradually faded away.
There being very limited social interaction possibilities in a small rural town, still being young enough, I joined the Jaycees.
Our one community event was a winter clothing drive for the poor, but we had meetings a couple times a month, and it gave a social interaction, diversion, and meaning to my life.
Most of them knew I had Lyme, but for the most part it felt so good of having that meeting night where Lyme was left behind. I eventually made VP of the local chapter of about 20 individuals.
After two years, this past December, we had our last meeting after 63 years of being a local chapter. This was due to loosing members moving away, and to the fact Facebook and ‘social media’ took away the desire for younger people to meet and socialize in person.
I’ve lived with my elderly Father since 2014 when things went to hell with my significant other. Slowly my Father’s health is failing and many days I am the healthy one. The farm is over 110 years old and is falling apart. He has no desire to move or downsize, not negotiable.
It is no longer a good or healthy place to live: but I have nowhere else to go. Maybe in the future I will have options, but not now. This really gets to me.
Some people have suggested that I try Facebook to socialize, but I have no desire to have my legal name attached to posts on a public medium. I don’t need my life further complicated by some post that my medical insurance company or others could find.
So, I sit here, in a decaying old farmhouse, with an elderly father, dial up internet, 6 miles from a small town of 1500 which is the county seat, wondering how my life got this way.
There is not a single person anymore in my life I could call/email/text anymore for purely social reasons without being ‘awkward’. Yes, I’m that alone.
Geographically, I live in a ****ty area, but Lyme was the one that clipped my wings and ultimately caused this domino effect on my life.
Thank you listening to me, I have no place else to share, perhaps by sharing I can find peace in knowing I'm not alone and try to move on.
(breaking up the post for easier reading for many here)
posted
Wow, k84, that's a rough story. I'm so sorry you are so alone. I feel the pain right through the internet.
You are very brave to reach out and to share the truth. It's so sad to me that even your church would abandon you in a time like this. I know it happens, though.
If there is more than one church, you might try it. I know our church does not tell people it is THEIR fault they are ill. Some denominations do. I realize that. It's horrible.
I fear ending up on my father in law's farm one day. The place is in fair shape, but still. I don't like the area .. at all. I would feel very lonely there.
So I get that part!
Feel free to chat away here. We'll do our best to provide some company for you.
By the way, you can get on Facebook with a fake name. You have to figure out how to to do it. I know others do it.
The name has to seem to be a real name, I think. But with dial up .. I don't know! Might not be worth it!
I'm off to bed... so take care of yourself and hang in there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
K84- hang out with us! You are not alone! Maybe shoot a fellow Michigander, moss(who is down thread at the moment) a pm. Posts: 764 | From Northwest | Registered: Sep 2014
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posted
Lyme and co's isolate us, that's for sure. Even me in a busy city can get isolated by symptoms and not be able to join in with others.
I still find that it greatly helps to break that isolation and find a way to have some socializing. So I'm wondering if you can think of any way to get together with anyone even though the group you were socializing with broke up?
What your cousin did and what your fiance did is not your fault - it's them, not you - and you are not even your reputation created by others -
you're you - and you have the right to define yourself, which you're telling us here includes being a social being - I'd like to see you act on that somehow.
Posts: 13116 | From San Francisco | Registered: May 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
K84, I'm so sorry you find yourself feeling so isolated. I too felt that way for years because nobody else in this city had Lyme???? Not! If it wasn't for this site....I would have lost my mind. Some days, I will admit, I still lost my mind.
Anyway I'm a co-founder of a support group in my area. We have a private FB page that can only be viewed by those in our group. Who needs to be judged by those that don't get it. To be judged by the church leaders is the saddest.
There are so many support groups in the MI area and I would hope one of those groups also has a private FB page. My hope is a MI person will come along and help connect you, and even better find a way to get you to a support group nearby.
In the mean time....make this site your daily home and connect with the people who get it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
k84. Don't you dare give up.
You fight for every breathe on this planet .
You sound like a honest, caring and compassionate soul.
Why let "them" win ? You know who I m talking about. The dishonest, gossipy, soul sucking people . The ones with such unattractive qualities.
Certainly, your life sucks right now. I won't sugar coat it. You re living it and want validation. You are suffering and I want you to know I acknowledge your pain.
Life is hard. Life shouldn't be this hard. But it is. What you are going through is life. Sometimes ####y, sometimes good, sometimes in between.
Many here at lymenet don't recognize our lives anymore. Through no fault of our own, we are now in the twight light zone.
You are welcome here !
Don't think about what should have been, what could have been. Can't go back. Forward is the only coarse. Makes it easier when you don't have to make a choice, right ? Go forward !
You need a LLMD to adequately address treatment for this hellish infection. You need to get healthy.
You live with your strongest ally-your father. Embrace him in his golden years, you ll thank yourself later. Maybe he could get a reverse mortgage to cover medical costs?
Put up fliers in stores to see if people would donate to your cause. Maybe local paper or t.v. station could help.
Get mad at Lyme. Kick him to the curb. Fight my friend.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
K84, you have found a family! We unfortunately are in the same boat.
Our boats may look a bit different or sound a bit different, but we each have our deamons with this dumb disease.
You are not alone!!! I honestly don't know what I would do without my lymenet family! I too am a social being, but the effort it takes to be social is exhausting and many don't understand because I "look good".
I feel like a shell of who I was most days and I too wonder, How the heck did I get here.
Come talk to us anytime.
And like bonnie said, Fight!!! It is the hardest fight of our lives, but fight!
oh and I totally understand your dad not giving up his farm. My parents are the same way. They are very elderly and WILL NOT give up the homestead.
It is WAY too big for them to take care of, but they will die there... I'm sure of it.
Find the care you need. And we are here!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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1)I'm not new here, as evidenced by my join date at the bottom of my posts. I've been a member of Lymenet here for almost 6 years. In the past I'm mostly kept to myself except to occasionally chime in if I had something helpful. Now its just progressed to I had to share...
2) Yes I have a LLMD. Actually I've had several. I've had consults with a few famed ones. I managed to improve after a boatload of Bicillin shots, but once Lyme was pushed down Babesia Duncani bubbled to the surface, and It's been one hell of a battle. At one point I threw a IGM of 1280 for Babesia Duncani through Igenex.
I get to make the trip to see my LLMD every 3 months.
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
k84--I have battle this for 13 years and I do find a lot of joys along with the downsides.
Hang in there and keep your faith in God. Thankfully, my church understands that is not my relationship or lack there of with God that has kept me ill.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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posted
Thanks for sharing k84! Many here can relate to your struggle. Stay strong and keep fighting the fight. Don't let this become your life. You're still young whether you believe it or not. Never give up.
Posts: 87 | From Massachusetts | Registered: Aug 2015
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posted
So sorry you are going through this. Please take one day at a time and hang on!!! Our son's childhood and teen years were lost and his life has been ruined because of this terrible disease.
It's very sad that your pastor made such an ignorant statement. He of all people should know The Lord does not send illness - the evil one does. Just look around at what's going on in the world to see his handiwork!
I completely understand about not being on Facebook (I don't belong to it either and know of others too!).
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large lock of text due to neurological problems from Lyme. Thanks.
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online or find a station near you by putting in your zip code in their link:
posted
k84, you are welcome to keep sharing here - we all know what it feels like!
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
k84, your story brought tears to my eyes. You are strong and kind. I can tell. Your father must be so grateful to have you by his side, even though he is stubborn and not wanting to give up his beloved farm.
This disease is so unfair and unkind. I am glad you have been with Lymenet for several years and I hope you will continue to write and get support here. Know that you are not alone. I hope you will find a support group in your area with the links that some have given you here. It is a hard battle to fight alone.
God bless you and thank you for writing. You have probably helped more than you know with your candor.
Posts: 2386 | From New England | Registered: Aug 2011
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