Just a little down tonight. Not many seem to understand or care what's going on with me (I do have a family that care but not really any friends). I've been really ill for many, many, months now (had Lyme for most of my life-undiagnosed though). Just got onto rocephin and had 3 really good days and now 5 really bad days. I'm not sure I can take the herxing, especially without a lot of emotional support. None of my peers seem to get it that I'm REALLY ill. They are just so self-centered and seem to only talk about themselves. Maybe it's the age factor? (25) I have always been the kind of person who would drop anything for anyone in need, and now when I have a need, everyone just disappeared. Just seems really unfair. I guess I just need a pick me up. I really hope that I get through this, I feel like it's going to be such a long road (as it is believed I have Babesia and Bartonella). Any words of encouragement?
Posts: 24 | From MD | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Summer24 - you've come to the right place!
We've all lost friendships and social lives to Lyme. This is an extremely isolating illness.
You will get through this. Step 1 is being diagnosed. Congratulations on that! Now you have to make it through treatment, and you will.
Please find a support group. You will probably find members around your age. They will understand you. Most of my friends are from my support group. I spend very little time with any non-Lyme friends. Too emotionally challenging for me right now.
Check out www.lymefriends.org. They have nightly chat sessions that you can join.
And make sure you are adequately treating for depression and anxiety. We all have emotional symptoms. It makes sense to manage them.
Read some threads on detox in Medical Questions. Detox can go a long way to managing the bad days.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
No much left to say, except I know how you feel. Fight through it though, because You'll never know how the story ends until you write the book.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Dear Summer24, We care! Seriously. It was so good of you to write.
Lyme is a very lonely disease. So hard for most people to have any sympathy for Lymies because they literally cannot SEE that you are sick. We don't have big, obvious external signs that flash "DISABLED" to our acquaintances.
I had a friend of almost 2 yrs get sore at me Wed (a particularly terrible day for me) for showing up late. Hell, I'm surprised I made it there at all! She said she'd understand if I was sick, and I just repeated that in disbelief. Then she said, "Well, if you got a cold or something." A COLD? If only!
She doesn't know that I held back tears again & again as I painfully dressed as quickly as my weary bod allowed. She doesn't know how much the vibrations of the car hurt me. She doesn't know that I sat in my car when I arrived, shut off the engine and started crying from the stress. Had to talk myself into going in as quickly as possible, not giving in to the pain...
The Lyme has a hold on you, but it's NOT YOU. You're developing empathy and insight that your friends don't have. You're developing self-reliance, maturity, and a long view that your friends lack. May be hard to sense now, but you'll be a more desirable friend, partner, and employee when you get to the other side of the LD mountain because of the experiences you're having now.
LD is so odd. We look okay, but I feel detached often, like I'm just playing a roll. (I think it's because there are so many parasites having their way with my bod!) Have you experienced that? Being disabled even partially and even temporarily stinks. Having LD helps us to be kinder to everyone we meet, because one just never knows what the other's hell is.
Sounds like you've enjoyed helping out people in the past. Well, you can still do that now! Have you considered volunteering? Can be very rewarding! You could do it informally here, by responding to posts with a cheery note. Or maybe, if your handwriting is okay, you could write cards for seniors in a local nursing home. Their lives are a bit like ours, now. They used to do so much more, but now it seems no one cares... If you make new friends in a nursing home, you can be sure they'll care about you & rejoice to hear from you.
Another idea is to become active in Lyme education & awareness programs, maybe by getting the word out on Lyme at your local high school or community college? You still have options!
natcaplyme.org has an excellent reputation in your state. If you can't attend their meetings in DC, there are County support groups in MD that are affiliated with natcaplyme. Check it out!
And it's not that no one cares about you, it's more like out of sight, out or mind. Find ways to "be seen" so you'll have more opportunities to find the comforting friendships that can mean so much.
When you just need to relax, play your very favorite music and maybe try to dance. Even if you're too tired to do more than one verse, get up and shake that thing!
If you find you're often awake beyond midnight, be sure to bring that up with your LLMD. Staying up too late can worsen the pain cycle, and there are many options for improving sleep.
Keep posting here, and you'll find more people who care.
All best wishes for a lovely May, Smile
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
You have come to the right place. People here really do care.
My daughter has lyme, and she says it would almost be easier if she had cancer. Then people would not expect so much from her. That's a sad statement, but I think that everyone here understands those kinds of feelings.
Glad you found us.......Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I'm here for you! This is the best site for encouragement.
I thought I'd never get better but over time I have improved quite a bit.
Alot of us found out the hard way who really cares in our lives.
It's a hard lesson to learn but a valuable one.
I know that what amazed me the most is that I was able to go through almost all of my treatment alone and without hardly any support.
It taught me what I'm really made of.
You're not alone.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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posted
I struggle with this and am trying to come to grips with the fact that I am a changed person while others are not.
Sorry to say it, but it's worse for a 25 year old than a 40 year old, in my opinion. You're right. That's a time in their lives when they are focused on themselves. It's unfair to expect others, who are healthy to understand. They just can't.
Summer, you do have support, just maybe not in the places you expected it would be if you ever needed it.
Very valuable advice shared here.
Posts: 797 | From New York | Registered: Feb 2008
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posted
Thanks all for the support! It really means so much! I think it is just "out of sight, out of mind" but it is still so hard for me to be friends with these people when I could never do that to someone who is ill. You guys are awesome! Thanks so much Remember to Smile, your words really helped me. Btw, I do volunteer. I am very involved with animal welfare/rights and right now I'm the hotline for animal control in my community. It's very rewarding. However, I'm just not well enough to get out and about yet. But that will come. I have a very supportive family so that helps as well. I really appreciate all of you sharing your stories as well. LD IS a very isolating disease....people are ignorant to it and I'm glad there is finally some awareness emerging about it. I wish there was a streaming chat on here so that we could actually talk live. If any of you are on fb/feel comfortable, I'd love to friend you (or have you friend me). They have live chats on there. Message me privately if you are interested. Thanks so much guys! Hope you have a "good" day today! :-)
Posts: 24 | From MD | Registered: Apr 2010
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posted
Summer, it has been stunning how much bad behavior I have seen from people I respected and thought of as friends. It happens to all of us, it seems without exception. You are right that a lot of people, probably most people, are just completely self-absorbed. Just keep reminding yourself to accept that care people do offer -- like here, where everyone is so wonderful and giving. It may not be the same as having friends who can come over and bring you a DVD to watch or a meal, but people on here are genuine, real, and caring so just keep opening your heart to what's out there and fighting the fight against this dreaded illness.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I think many of us are in the same boat. Battling this disease is a full time job and we're lucky if we can hold down a job. It saps all your energy and you tend to lose family and friends as they really don't understand.
I'm not trying to convert anyone but I found this website to be helpful.
I actually emailed them and got a free book to read!
Oh well - best wishes on your journey - we're here for you!!
-------------------- 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
"My daughter has lyme, and she says it would almost be easier if she had cancer."
I have said something like that to my family several times. We have lost other family members to cancer, and they know all about that and would immediately take it seriously and offer lots of practical help.
What I tend to get instead are lots of suggestions about things I should do, which are either irrelevant or impossible, and serve to convince me that people really do not understand how ill I am nor believe me when I say I can't do this or that.
One day I said to my dad, "My neck's been hurting a lot today." And he says, "Really? What happened to your neck?" I've been sick for a year now and have had a stiff neck the whole time. I said, "I got Lyme disease." Symptoms I live with daily are just not on people's radar.
While making plans and reorganizing my life to cope with what I have now realized will be a long recovery, I get "You need to stop being so negative" because I have accepted the reality that I am not on the verge of getting well in a month or two.
I am positive that I WILL get well eventually, and I see reorganizing my life to accommodate my treatment and self-care toward that goal as a positive step, so why can't other people get that? Instead of thinking that I would be fine if I would just stop being lazy and/or depressed. (And I'm not either of those things--I am actually happy most of the time, and feeling good that so far I am managing okay even though it's difficult.)
I don't think it's that people don't care--I think they really truly don't understand. There is hope for some of them to come around after long enough contact with you, and you can make friends among those who already understand.
Hang in there and take care of yourself.
-------------------- 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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I understand the cancer remark. At one time, I would think that would be a horrible thing to say, but now being on the other side, I fully understand not getting a clear cut diagnosis like cancer, and treatment. I don't wish cancer on anyone, but having lyme and its side effects for so long, I don't wish lyme on anyone either. I wish you the patience to get this thing dormant at least and go on with your life. One day at a time.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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