posted
Hi Guys, So I live a lone and work part time from home. I make sure I get out everyday to exercise and go get some tea at Starbucks or something. My family isn't close and most of my friends have kinda moved on from me.
So i don't really interact with people very often. Like I'm realizing now that I haven't actually talked to someone I know (in person) since Christmas. This is pretty normal for my situation. I go like months at a time without really seeing anyone other than the cashier at the store.
Uhhh is this normal? #1 its hard to make friends when your sick, and #2 I don't really feel like trying #3 I hate explaining to people my situation with my health.
I'm pretty independent, but i'm thinking this isn't good for me. How do you guys cope? Or i guess any pointers?
Posts: 844 | From CA | Registered: Apr 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
It's hard...At least you get out... This last few months it's the doctor, blood work, CT or home... I had 3 days where a woman 20 years older than me tried to "air me out".
We got out for 2 hours 2 days and a 3rd day another helper. We're talking drive through bank, walk in and out of Old Navy and Payless.
That was that....been in my room 90% of the time since..............
One or 2 friends call and pray. Other than that it's four purple walls and a lot of dreams down the tube...
Sure hope I get a big return from what the locusts has taken....
Prayer, crying, calling for prayer and now a diagnoses and this site....... Take care , Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Ha Just added my two cents to this thread adn it disappeared.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sorry kam...i hate it when that happens
hope you have energy o repost
i understand this thread
there are times when i get out regulary to ride and kayak and walk...but even then-at my best most family members and friends have gone by the wayside
bad disease. bad. bad.
and thank goodness for this site---this interaction has to be better than none at all
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
i definitely relate. i think the best coping mechanism is hope. knowing it won't be like this forever.
i try to talk to one person a day. a far cry from my sales job a couple years back.
it's just so much easier to just not be social when you have lyme....
now that i think about it, there's no reason for my neighbor to have not said a word to anyone in years...he's healthy(i think). He prob thinks the same of me.
Posts: 147 | From youngstown | Registered: Oct 2011
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posted
I just don't understand whats wrong with these people in our lives. I cannot imagine having someone I knew be really sick and not reaching out, let alone not responding when they reach out.
It just makes it harder I think. I'd love to have someone to go on a walk with or to get coffee or dinner with, once or twice a week...
Posts: 844 | From CA | Registered: Apr 2010
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posted
For me, I feel like my family and friends have done a basic search about lyme's online and see the whole thing about being cured after a month of antibiotics... I feel like they honestly don't understand how horrible it is
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Whitney - I know exactly what you mean.....
Friends I've had for years - helped some through ugly divorces, medical issues (not Lyme), hospital stays, Dr's appts, sick kids, etc.
When I got sick, these "friends" slowly started to fade away.
Now, I don't see or hear from any of them.
Keebler said it best awhile ago when she said "Lyme sure is lonely".
But you know what? I have met some wonderful people on this forum. People that I've known for a far shorter period of time, but these new friends have stuck with me through all of it.
It's important that we continue to communicate with others, so we don't feel so alone in all of this.
Just wanted to say I totally understand what you are saying and if we lived closer, I'd say let's meet for dinner. Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Sometimes I wonder which is more painful, the disease or the loss of friends.
I felt this profoundly in the beginning. Watching all my friends continue on with their lives. I had more support while I was ill and no one knew what was wrong with me. Once the diagnosis came, the calls slowed and now have stopped.
Even my own sister, who lives across the country, had no interest in learning about the disease. We don't talk anymore. I just couldn't listen to "You could do it if you really wanted to".
It doesn't hurt so bad anymore. I just focus on my husband and kids. That's all I need for right now.
Posts: 33 | From Maryland | Registered: Nov 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Not quite on this subject, but vector-borne diseases don't get understood now either. There used to be yellow fever and malaria in the U.S. Now, except for west nile virus, there really is nothing else that keeps the public worrying about getting diseases this way. All the tickborne diseases are officially described as rare, and perceived that way by the public
Vectorborne diseases are thought of as something you get in third world countries.
Also, since syphillis became much less of a public health problem, spirochetal disease is not respected or understood.
And back on the subject, yes, lyme is a lonely disease.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yes- I understand. I just moved to a new city. I knew when I moved that making friends would be difficult- and at that point I thought I was "better" (aka in remission/no symptoms).
I went off antibiotics, and continually got worse for 5 months, to the point where I was in the same situation as you.
A lot of the time, I really don't have the energy, and when I do, I have to deal with explaining to people why I can do somethings and not others, why I am so tired, and why I always cancel.
But I don't really want to come out and say it is Lyme, and I REALLY don't want to talk about it in general
I am still trying to find a balance between forcing myself to go out and do things/be social when I don't want to, and letting myself stay in when I am too tired.
Unfortunately, right now I am so tired that every time I try to go out and do ANYTHING I end up completely exhausted- at best I go home and go to bed, at worst I am exhausted for days after.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
OptiMisTick, I think you nailed it. Well said. Those who do still ask how I'm doing can't believe it when I say I'm still on meds. And I've only been in treatment for 4 months which is nothing compared to most people on here.
It actually helps to know that I'm not the only one feeling isolated and misunderstood. When my mom was visiting over Thanksgiving, she thought I was just being lazy and told me I should get up off the couch and go for a walk!
Posts: 1737 | From Virginia | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
On-line support through Lyme Disease.org -
Posts: 48021 | From Tree House | Registered: Jul 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hang in there. Someone will come along that works out.
I have had people want to do things with me and have tried...but I am still at the stage where it takes too much out of me and not worth it.
It took me a long time to figure out that listening to them was making me worse instead of better....even if it was interesting conversation.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I've always been a shy person but having lyme has really made me a recluse. I wish I had friends but its too much of an effort. I focus on my husband and my son and that's about it. I'm too sick to work. It takes me all day to light chores around the house.
I have progressing nerve damage from lyme(I think, I never tested positive) so my arms are very weak and now my legs are going.
If you have a good day, try volunteering. Sometimes its the best way to forget your own problems.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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