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Posted 1/20/2021 3:17 PM (GMT -7)
Hey y'all...

I've been in treatment for bartonella and bebesia for over a year now, and I find myself in a phase of feeling bad again. I'm really struggling in terms of mental health. I feel hopeless, helpless, and detached. I'm also struggling with an identity crisis of sorts because I feel I've become someone I don't like--I feel like the old me was really the better me. I'm also struggling with a lot of self-judgment because I am not very knowledgable around my illnesses--I don't research, I don't detox, I can't even bring myself to take supplements. I feel like a big wimp and a failure because I feel I'm being so dramatic about my situation, yet I objectively have it pretty good (not very sensitive, minor herxes) compared to others. I feel bad for even posting this, like I'm not worthy and this is just attention-seeking (and it kind of is, really).

Anyone else out there struggle with this too? I guess I'm just looking for moral support and encouragement to know that I'm not an awful person, I'm not weak, etc. I just feel like I let this disease run my life when I could/should be doing so much more to help myself...

Is there such thing as a support group that meets via phone call or Zoom for this? Something similar to the AA style of support--I used to attend those meetings and they really helped.

I hope I can start using this forum regularly for more research and guidance.

Thanks in advance. xx

Post Edited (mitch27) : 1/20/2021 3:25:15 PM (GMT-7)

Posted 1/20/2021 9:20 PM (GMT -7)

mitch27 said...
Hey y'all...

I've been in treatment for bartonella and bebesia for over a year now, and I find myself in a phase of feeling bad again. I'm really struggling in terms of mental health. I feel hopeless, helpless, and detached. I'm also struggling with an identity crisis of sorts because I feel I've become someone I don't like--I feel like the old me was really the better me. I'm also struggling with a lot of self-judgment because I am not very knowledgable around my illnesses--I don't research, I don't detox, I can't even bring myself to take supplements. I feel like a big wimp and a failure because I feel I'm being so dramatic about my situation, yet I objectively have it pretty good (not very sensitive, minor herxes) compared to others. I feel bad for even posting this, like I'm not worthy and this is just attention-seeking (and it kind of is, really).

Anyone else out there struggle with this too? I guess I'm just looking for moral support and encouragement to know that I'm not an awful person, I'm not weak, etc. I just feel like I let this disease run my life when I could/should be doing so much more to help myself...

Is there such thing as a support group that meets via phone call or Zoom for this? Something similar to the AA style of support--I used to attend those meetings and they really helped.

I hope I can start using this forum regularly for more research and guidance.

Thanks in advance. xx

Hi Mitch! Welcome to the forum.

You are NOT a failure!
This forum has members who have or had symptoms that are few and mild and members who have many many symptoms and severe.
(I have known people who spend most of their days in bed)
I also know members who have more minor symptoms and have continued on with work and their social lives.

Some people do all the “right” things - healthy diet, supplements, plenty of sleep , limit stress,detox etc.

Others eat junk food, don’t detox... etc.

Most of us are somewhere in between.

We’re not here to judge - we’re here to help... to encourage, and hopefully to pick you up when you’re down.
Posted 1/21/2021 5:30 AM (GMT -7)
I think many if not most of is have felt like you Mitch. I know I have. I went from strong, healthy, very active breadwinner to weak, useless bed bound turd almost overnight. It can be hard to accept. After 3 1/2 years of very aggressive treatment I still.have many in bed days but I also have some pretty good days. The pretty good days give me hope.

It sucks what happened to us and it's ok to be pissed, feel cheated, hell even feel sorry for yourself every now and then. The longer you treat and fight the easier it is to accept. Just don't go to far down the rabbit hole. Have faith that eventually you will get past this or at least to a place that is better than where you are now. Don't give up hope.

I recently came across a quote that felt like it fit the lyme journey to me. I think it is from the count of monte cristo. It goes something like "Only a man who has felt ultimate despair is capable of feeling ultimate bliss. It is necessary to have wished for death in order to know how good it is to live.....the sum of all human wisdom will be contained in these two words: Wait and Hope"

It's ok to feel cheated, we were. Just don't let those feelings take over. I hope you have someone you can lean on during this. Others will be along who are far more qualified to give you advice about this, Saraeli comes to mind. Good luck, hang in there and you are not alone. You will make out to the other side.
Posted 1/21/2021 7:40 AM (GMT -7)
Mitch,

Glad you decided to join the forum. No one should have to go through this alone. It’s a horrible and frightening illness to deal with and navigating it can feel like walking through a minefield.

You are not a loser. You will get through this and come out better in ways you didn’t plan on.
Posted 1/22/2021 1:57 PM (GMT -7)
Keep you head up, it will get better. For me once I was approaching the one year mark I was really starting to get down mentally as I felt I would never get better. Shortly thereafter I really started to improve and now am pretty much able to do what I want without getting crazy fatigued etc. Unfortunately with lyme no two people are the same so no one knows what will work for you. You have to be your own advocate and keep trying different things. Mentally just remind yourself that people do get better and you will be back to "healthy" at some point. There is no timeline as everyone is different, but there are a lot of people out there who have gotten better so there's no reason you can't too.
Posted 1/22/2021 6:37 PM (GMT -7)
Hi Mitch,

I'm brand new to this forum too. I can relate to a lot of what you write. My most recent flare up brought me to my lowest point mentally speaking. I just didn't feel like I had any fight left in me (been dealing with this stuff off and on since 2006.) The biggest thing I can emphasize to you is that it is OK to accept where you are in this moment...No self judgement. It really is the way out of this vicious cycle.

Doing the research, diet, detox, etc all at once can be overwhelming for anyone. Don't beat yourself up over that! I would suggest starting with one small change that you can commit to. No matter how small it's still important, because in my experience at my lowest, the smallest of positive changes most often lead to other small changes and victories. Other small victories lead to even bigger victories. So start small!

I wish you the best in your recovery! I hope that you can find community and support on this forum!
Posted 1/22/2021 7:26 PM (GMT -7)
Good advice, Bufflehead and welcome!

Keeping a wellness log is also a good idea I think. This way you can make correlations and hopefully figure out what is working for you. I used to get pretty crazy with it but now that I'm not really treating, I'm finding that just a weekly entry is usually enough..
Posted 1/25/2021 1:55 PM (GMT -7)

WV Mike said...
"Only a man who has felt ultimate despair is capable of feeling ultimate bliss. It is necessary to have wished for death in order to know how good it is to live.....the sum of all human wisdom will be contained in these two words: Wait and Hope"

Thanks Mike, that's an excellent quote! I can definitely relate to that.

And thanks to everyone who responded--your kind words of support definitely helped. I appreciate you taking time out of your day to comfort a stranger over the internet! 😊 I'm still struggling, but I'll keep on keepin' on...
Posted 1/26/2021 3:59 PM (GMT -7)
Hello. While I have a different pain issue, I know what you mean by the struggle. Some days it is all I can do to get moving, when I would rather just stay in bed.
I just joined this forum and hope to get help and ideas of how to manage my pain. I believe it is important to have a community to support us and empathize.
So no suggestions, but I hope you keep on truckin'. (That's a throwback to the 60s!)
Posted 1/28/2021 10:20 AM (GMT -7)
Bree, so sorry for your struggles too. xx
Hopefully we can all get through this!
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