posted
Hi everyone. I'm Carolyn, 39 yrs old. I posted on lymenet years ago here & there when I was in a L-O-N-G battle with lyme & co-infections. I don't remember my old username so starting fresh.
Got a severe case of lyme & babesiosis in 1997. It took me over 15 years with tons of doctors & various treatments to get a 'partial life' back where I could work at home several hours a day, clean house, socialize more, exercise, go shopping, etc. Never fully recovered, had low immunity, got sick often, chemical sensitivities, etc.
After some BIG stressors to my body last year, I got hit big-time with what seems to be a recurrence of my old lyme. I thought it was totally over but my new doctor believes all the new debilitating symptoms that have slammed me lately are from a tick-borne illness.
Waiting for Igenex results. Started treatment and already seeing improvement thank goodness. I can now walk again...hoping for more improvement soon.
I'm married to a VERY supportive husband who has always been there for me...so blessed to have him. My mother is amazing. She's been with me through all the scary days lately where I was so ill and totally debilitated. She's my other best friend.
I have two sisters that I consider my friends but they don't really 'get' what it's like to live with a chronic illness for 20 years since they've never experienced it so I feel a distance there.
Besides my close relationship to my husband & mother I feel very isolated. I'm always at home resting now and feel like the rest of the world is going on without me. (again - felt that way for over 15 years before so it's an all-too familiar feeling.)
I'm just looking for some friends here. I wish there was a magic wand I could wave to just 'PRESTO!' have a friend that I could hang out with sometimes who totally understood what fighting this disease is like.
Over the years I distanced myself from friends because my life was so hard and nothing ‘fun’…always on the couch pretty debilitated, could barely go anywhere, etc.
I'm feeling very down because I'm not involved in any groups or anything local...just me, my hubby, mom and couch. Again, I'm so grateful to have them in my life b/c I know not everyone fighting this disease has even one support person. I just feel like a social life with friends is really missing…it's hard & painful.
I try not to stress about not having friends but it really gets to me. I beat myself up about it so often and need to break that habit because I know it's not good for my healing. Plus, my life has been so difficult with lyme, who can blame me for staying home and resting over the years.
Really hoping with treatment I will be able to get out more and build a life again...it's just in the meantime I feel like I'm totally stranded on a pretty lonely, sick island. Do most of you cope just with online friends who ‘totally’ understand what lyme is like?
[ 03-09-2017, 08:40 PM: Message edited by: carolync ]
Posts: 57 | From New Jersey | Registered: Mar 2017
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posted
We've been chatting about this here recently - there are a number of people who are expressing what you're asking for - maybe someone can find the links - maybe some of you could get into private message chatting?
Also, Lyme facebook groups are good too - either in the facebook chat or in the messaging, which can be done in real time, like a real conversation with someone online, which I have found very satisfying at times to do when I have the time.
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey Carolync,
Since you ve been on lymenet before, you know you have come to the most caring atmosphere available for this utterly horrible disease.
As Robin123 stated, we have been discussing this very same rabbit hole we find ourselves in.
Go to the search button and look up chronic isolation issues. Very recent posts that may help you.
I m not on Facebook and I m at the point where I don't even answer my phone unless it's the doctors office.
Many here are very ill. But some are doing well towards recovery. So there is a lot of hope to go around for each of us.
I used to be an advent reader. I longed for the day when I would have more time to be able to immerse in a good book.
Now I have nothing but time. Unfortunately I can't follow the lines, or understand what I m reading, or remember what I just read.
So I turned to music. All different kinds. I listen to YouTube videos. Whole albums. It makes me feel better.
I also go to zoo cams. Right now I m on Aprilthegiraffe.com awaiting April s calf birth. San Diego zoo cams are cool too.
I go to beaches.com. I ve been all over the world to the finest beaches. I can literally picture my toes in the sand.
I m so sorry to hear how sick you have been. You deserve a break, for sure. Thank you for sharing. You helped others today that find themselves in the same situation.
Post here all you want. I do. Apparently you can't wear out your welcome. Posts: 2977 | From Florida | Registered: Nov 2016
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I'm still able to get out and around, Praise the Lord. I hate not being able to be around people. That's one reason I'm on Facebook and LN a lot. I love being around people.
So .. you have come to the right place!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi Carolyn and welcome back to Lymenet! It is very sad that this horrible disease is so isolating. Some people just don't understand while others choose not to.
Here is the link 'Robin123' was referring to and it is a few threads down from yours:
"How to end isolation when you can't do anything ever"
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or find a station near you by putting your zip code in this link:
posted
Hi Carolyn, You're not alone! Your post could have been written by me. I've steadily withdrawn from activities and friends since starting to battle Lyme in 2010.
I've become disillusioned with treatments and doctors after realizing how much of a financial hardship it creates.
I'm currently on break from antibiotics and doctors not by choice but out of financial necessity.
My husband has had to retire from his job early due to severe disabling arthritic pain. I think he has Lyme also due to where we live, but he refuses to get tested. His doctor refuses to let him get disability. So, I try to be strong and supportive for him as well. Anyway, I digress.
My point is, you are not alone.There are many of us who know exactly what you are going through. We all need to fight our way through this somehow, and hopefully bring about change in the way Lyme is diagnosed and treated. Stay strong.
Deathly Ill
(breaking up the post for easier reading for many here)
posted
Thank you so much for all your replies and support. Thanks for the links as well to recent threads. It's nice to know I'm not alone in this and that there are people here who truly understand what it's like to live such a limited life.
Are there particular Lyme Facebook groups that you guys frequent? Are some better than others? A recommendation would be great.
I was a little confused by a Lyme Facebook group that I went to the other day. It just seemed like people post things to it and then people comment on the posts? How would you know who is around to chat with? I'm a little clueless on this stuff.
Bartenderbonnie - Yes, I'm finding music helpful when my brain can tolerate it. I made a playlist the other day of songs about not giving up to play when symptoms are really flaring and I'm stuff in bed feeling miserable. Love your idea of the zoo webcams, thanks!
I'm a photographer...I create art of the beach, nature, flowers. I haven't been able to get out with my camera for over 6 months but I do like to look at my pictures and 'escape' mentally to a prettier place.
It's been hard to be on my computer with my symptoms lately so bad but I need to push myself to get into creating again...even if it's just one new art print every couple weeks. I miss that creative outlet so much...it really helped my stress levels in the past during my illness.
hopingandpraying - Thank you for the reminder that I am "fearfully and wonderfully made" and that my life matters. It's crazy what living on the couch will do to your self esteem and sense of worth...I need to keep those truths about myself in the front of my mind, I've been spiraling lately with negative thinking. It just makes the whole situation worse and scarier than it already is.
I will check out KLOVE radio, thank you.
I wish there was a closer lyme support group in my area. The closest one is about a 45 minute drive and right now it's just too much since I'm not driving.
Deathly Ill - I am so sorry to hear about you and your husband's struggle. Thank you for sharing your strength and courage.
I'm so glad I can now be a part of this community, just knowing I'm not alone feeling all this each day is encouraging.
You are all in my prayers.
Posts: 57 | From New Jersey | Registered: Mar 2017
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posted
oh how you are not alone! I think most of us know the feeling of becoming almost completely isolated. Not necessarily because we want to, but we can't physically and mentally function well enough to carry on a 2 sided friendship.
I have several friends that are good enough to socialize on my terms and know that at any point in the conversation, I could look at them and just say, "uggh, I have to go lay down, NOW!" But many of my socializing has been greatly diminished.
It's slowly coming back though.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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I thought it was totally over but my new doctor believes all the new debilitating symptoms that have slammed me lately are from a tick-borne illness. 
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