I'm wondering if anyone has had any success in dealing with this emotional problem, as they go through the Lyme treatment. Can't "connect" with others (or myself). I'm living a very isolated, detached existence, and I'm sick of it. Have been in LLMD treatment for almost two years now.
Thank you, and God bless everyone out there.
Posted by lyme in Putnam (Member # 11561) on :
I live it. Please pm me anytime. I know the pain and frustration of living dead with depersonalization. Dp since 11/09. Emotional/neuro is so bad.
Posted by pme (Member # 31621) on :
I know this post is older.....but this is where I am right now. I am still searching for a diagnosis but all I can do is what I have to do...that's it. And that means take care of the kids and the house, work (though I don't think I can do that for much longer) and do what I can for DH. After that there is absolutely nothing left. I am still hoping to get some answers and treatment. Wanted you to know you are not not not alone.
I can't think and it takes me 10 times as long as it should to organize and complete daily tasks. That in and of itself is exhausting.
Hope you feel better.
Posted by philly78 (Member # 31069) on :
You sound like me pme. I am so disorganized as of late and can't think straight either.
About 8 months ago, I started seeing a psychologist because I developed severe anxiety along with panic attacks and depersonalization/derealization. I would cry or have outbursts over the most trivial of things. It was/is awful!
Looking back, and now being diagnosed with lyme, I know that is where the anxiety and emotional problems stemmed from.
The ironic thing is, I had been making great progress in therapy but after I was diagnosed with lyme, I briefly slipped back into the state of mind I had been in prior to seeing my therapist. And I don't think it was coincidental.
For me...I think I had felt more hopeful when I thought it was just the anxiety I was dealing with. But when I found out there was a physical reason for it...the lyme...for some reason, I felt less hopeful that I would get better.
I don't know why I felt this way and it took my psychologist to point it out to me. Anyway, what I started to do was treat the lyme and all the emotional/mental problems that came with it, separately.
I know this won't work for everyone but it certainly helped me. I didn't feel as overwhelmed thinking about things this way. After the lyme diagnosis, it was like I "unlearned" all the things my psychologist had taught me and I was making excuses for my not so well being.
When I felt like I was making my anxiety worse by my own behaviors/thought patterns (prior to lyme diagnosis) it was easier for me to "catch myself in the act" so to speak. I found that after my lyme diagnosis, I would day things to myself like...oh, it's just the lyme...not much I can do about it.
But there are some things that we can do about it. I went back to doing my relaxation and breathing techniques more frequently like I did in the beginning of my therapy. I started writing in a journal and doing other mindfulness techniques, stretching, meditation and restorative yoga.
It has helped. Granted, I'm still an emotional mess at times and my anxiety can get pretty bad but I know that without the exercises mentioned above, I would be in a worse place mentally.
This is just my experience and I know it won't be the same for everyone but I would suggest to at least give some of the above things mentioned a try.
I found when I started journaling again, I would cry as I was writing. But it was a "release" for me and helped me get things out and keep me more emotionally stable throughout the day.
I hope you feel better soon.
Posted by map1131 (Member # 2022) on :
Yes, yes, yes, I know those days. I lived it myself for about 6 yrs.
I will tell you what I learned about myself. Other people and socializing is a tremendous phyically draining part of life.
I didn't realize how much energy it can take to talk to family, friends etc. Now one on one, isn't too bad unless it's one's family or friends that are needy people.
Social events and the need to speak to others whether old friends, family or new acquaintance is emotionally physically and sometimes spiritually exhausting.
It came to the point where I would rather stay home by myself than go be around people that were harmful to me.
This wasn't good for my marriage. My husband told me "you don't like people anymore". We where a social couple. That wasn't true, but I knew how it appeared.
So I took the problem to my doctor and asked him how I could go back to being around people without it effecting my health for days. I would crash for days just from a family get together at someone else's house????
He suggested I try .25 xanax. One before I get together, one after I've been around a group. They did help me relax.
Now I did realize that some people are toxic to me. My father is toxic, my daughter was toxic to me (Thanks be to God that did change) and some of our friends are toxic.
What I mean is, their being is stressful and taxing to me. Issues with others, we all have them. If you don't, you are truly blessed to know only non-toxic people.
Pam
Posted by anjiell (Member # 28322) on :
when i first was bit i had flu symptoms followed by severe depression,detachment feelings and panic attacks,SEVERE.i was not treated because elisa came back negative so i went through 2-3 yrs of thinking i had a panic disorder when i had never had these issues before tick bite.i went through these 3 yrs without antibiotics and only prozac.it did let up and get better after 3 yrs and i had no appropiate med. 7 yrs later i was bit again with two embedded ticks and ---- hit the fan.i am now on lyme meds but struggling.so i guess i am saying to stay hopeful mine just let up and i felt normal again and i was never treated.if i knew then what i now i would of gotten on antibiotics stat and not of gone through that torture.now i do not know if i can even get rid of this disease because i am so intolerant of meds.
Posted by philly78 (Member # 31069) on :
map stated....
Now I did realize that some people are toxic to me. My father is toxic, my daughter was toxic to me (Thanks be to God that did change) and some of our friends are toxic.
--------------------------
How very, very true! I hadn't thought of that but it is a most excellent point.
Posted by sutherngrl (Member # 16270) on :
I suffer with this everyday. I have been in treatment for 3 years; and many of my physical symptoms are much better. All that is left is the mental stuff.
It is very overwhelming and I can't tell if its the stress of having lyme disease that brought it on, or if its actually the lyme disease itself, in my brain.
Every day is a struggle mentally.
Posted by lyme in Putnam (Member # 11561) on :
After the MRI the other day and results I was in a worse place. I thought if my lesions went away, it's psychological and maybe Meds can help that. After MRI said the same 12 lesions, I felt it's was medical (who am I kidding, emotional too, I have genetically OCD and anxiety), but felt less of a chance of feeling normal again. I know the feeling of struggling mentally, and not knowing what frame of mind u are going to wake up in. Having the stress of this, plus depersonalization not feeling bond by loved ones, is complete isolation from the outside. I try to keep doing as I usually do, but it's pushing everything, somedays the OCD is crippling, and I'm on OCD Meds. God and time will tell. I know I'm not what I once was and I want that desperately back, but so does everyone on this forum. Keep plugging away at it. It's tough, but were doing it.
Posted by bugabooboo (Member # 7383) on :
I am so glad I read this thread. I have a constant war going on in my mind!
Sometimes, depression sweeps over me in a wave..... just comes on. Sometimes I notice I am under fluorescent lights when it happens.
I have had issues dealing with people also. I have always been sensitive, but able to suppress the pain of "meanies" and blow it off.
Now, I am fixated on people who wrong me. Like map1131 said, It is exhausting to be around "toxic people".
This has ALL exacerbated since Lyme.
I stay in the house, but I am a social person and can't stand it for long.
The convictions of my faith say I must go out into the world.
It has taught me a lot about not judging..... for we can't possibly know what others are going through. Who could know the war I wage in my body and mind? It's a weird disease. Nurse friends, doctors, well-meaning family...... unless you experience Lyme.... it's almost impossible to explain or understand.
Add to that the strange treatment regimens and the things we must do to get better...... I have rifed for 6 yrs. I still feel like a mad scientist when I use it! I have nurse friends who just shake their heads. So I stay away from them.
It's a disease that isolates due to it's weirdness!
I don't want this to be a pity party. At the same time I speak of my suffering, I want to glorify God, for He truly comforts me, oftentimes through other people.
I have a more tender heart for other people who are ill or brokenhearted.
I have had time to study God's Word.
I have a wonderful husband who doesn't force me to work and we actually spend time together!
I was an RN pre-Lyme. Busy all the time and very active in many other activities.
Believe it or not, I did a lot of clowning, having a character who laughed a funny little laugh!
God bless all of you who suffer with this disease.
Find something to laugh about and people who will laugh with you.
Bug
Posted by farraday (Member # 21494) on :
Right on! Laughter truly is the best medicine! I am blessed with a crazy husband and funny kids. Even though we are sick, we still find things to laugh about.
I learned long ago that any kind of socializing costs me dearly. I simply haven't the energy or the mental processing speed. My speech is affected, but so is my mind and I have great trouble following threads of any length.
And, of course, I would not waste an iota of that precious energy on someone who is toxic. I have to put up with those who live with me now, but that is it. I seldom talk on the phone because it is just too much work.
Dealing day after day with pain, confusion and exhaustion is more than enough on anyone's plate. Keep your life as simple as you can. Think of it as a permanent "paper plate" day until you are well.
When I am hurting, I watch anything on TV that can distract me. We taped hundreds of movies that I can watch again and again because I have no memory of them. M*A*S*H reruns are my mantra...I know them all by heart. I connect with them because I, too, am at war and must cope any way I can. Sometimes I just listen to classical music with my eyes closed and sometimes, on a very good day, I can even play my piano to make my own music!
It is hurtful that my "friends" have lost touch with me. But, in truth, I have lost touch with them because I have no ability to carry on small talk or even to plan a lunch date because I never know how I will feel on any given day.
And even if I did find the energy....what do I talk about? I sew...a little. I craft...a little. I am writing a few books. But I communicate through writing, not talking. (Boy, is THAT a big change! I used to work in marketing and sales.)
People don't know how to react to me. One colleague was in tears when he saw me with my cane. I am not at all who I used to be. Sad, but true.
So live with it, I tell myself. I am still a worthy person. I am still loved by my family. And I still manage to do some creative things now and then.
Our former lives were stolen from us by a disease that goes unrecognized by our government and we are treated at the peril of our doctors' medical licenses....kind of like AIDS. My doc was an AIDS pioneer so he is familiar with the politics of lyme disease.
I thank God for him and his ability to help so many of us. I am out of bed most days, seldom need my wheelchair, and my pain is somewhat manageable. I can even read a book when I feel ok. This is progress...big time progress! So I say "Thank you, God" and try to keep on trucking.
Posted by Lovespugs (Member # 31426) on :
I can relate to everyone here....I used to be such a social butterfly...always wanting to be with friends, being social etc....
Now I have become a recluse....
even the thought of having to be around friends that ive known for a long time panics me...
I dont have the mental energy to be pleasant and friendly with anyone.
I dont think that people around me understand how exhausting just polite conversation can take from you.
I dread when the phone rings even though its family or friends. I dont have the energy to talk most of the time.
Im mentally drained...
I dont go out much anymore and prefer to be alone because I dont want to be a downer for others. But im also tired of trying to put a smile on my face and trying to be up for people.
I do have good days sometimes but I truly feel the change in me... im not the happy, cheerful, try to make others laugh person I used to be....
now I just want to be left alone...
But there is a scripture in the Bible found in Proverbs....it saids ...the One isolating himself seeks his own selfish longing....
I think this can be true also.... so I try to push my self when I can especially keeping up with feeding myself spiritually.
I force myself to reach out to people but when I cant I cant...I am learning to accept my limitations...
just dont give up! Keep tryng!
Posted by farraday (Member # 21494) on :
I try to find things to do to connect with people, things that do not drain me. I make clever cards to send to my friends. I write letters and emails to them. Every now and then I feel up to baking cookies or a pie for my family.
It is definitely ok to let folks know that you do not talk on the phone. I don't....only to my spouse and kids and then briefly. It is just too much work! I am too tired and confused to use Facebook.
My granddaughter is content to sit quietly on my bed and watch Sherlock Holmes with me, or MASH or something simple to follow. My little grandson drags a book into my bed and waits patiently for me to read to him. Reading aloud, by the way, is easy...you don't need to think of the words.
When I see everyone on their cell phones chattering away, walking with the phones clamped to their ears I can't help but wonder "Who is doing the work of the world?" As my younger son points out "Less talky, more walky".
He is a very successful engineering manager, very popular with his team. He works very hard. We text each other now and then and keep in touch, even when he is in long meetings. He says little and accomplishes much.
I write tons of stuff for the web page I am planning. I write nearly every day. I feel that way that I am producing something and not wasting every minute of my life. I write stories for my grandchildren....love letters to my husband.
There are more ways to communicate than talking. Just being together is wonderful! And being alone is necessary, too.
But, above all, we do not need to perform...for anyone. We are who we are and that's ok...for ourselves and for others who care about us. And we certainly do not have one iota of energy to waste on anyone else!!!
Posted by thehause (Member # 21237) on :
This thread is good and I thin maybe some of you are in the same place as me.
Do you have a hard time reading people - like reading body language and 'getting' what someone is trying to tell you?
I feel like I can only read the first page in a book and everything else that is there is being missed. It is really distressing and it has cost me a relationship I very much wanted.
Anyone have a reply? Help! Thanks.
Posted by jedidano (Member # 31627) on :
I'm happy that this problem is getting plenty of attention, as it's clear that so many of us are suffering from this awful symptom.
Are any of you having success with any kinds of herbs, vitamins, or medications (antibiotics or otherwise) to lessen (or even eliminate) this awful, awful symptom? I think we'd ALL be interested in hearing any success stories. I know that I'd be (sigh).
Thanks everyone....
Danny
Posted by Haley (Member # 22008) on :
Yes, I do have this symptom. It seems to be related to my inability to think. I just feel spaced out when I am talking to someone but I push through.
I believe that the meds that will help me with this are Babs meds, although it's too soon to say.
Malarone and Mepron appear to make me more lucid and sharp (relatively speaking). I will be combining this with IV Clindamycin.
Posted by jedidano (Member # 31627) on :
Yes Haley....I understand the "pushing through" part. I'm on Mepron now, along with tetracycline and diflucan, but I'm not familiar with those other two drugs.
I also haven't been able to find that much in the several books I've read. I've read about how to deal with "brain fog", but I think that lots of authors limit that to cognitive symptoms, rather than emotional ones.
I'd like to see the derealization issue addressed directly. I will be addressing it with my new doctor, and hopefully some folks will have some ideas on this thread. :-)
Posted by thehause (Member # 21237) on :
Let us know what you hear! I'm thinking about going to IVs to see if these neuro symptoms clear a bit.
Posted by Laura_W (Member # 31491) on :
Agreed, keeping up a conversation is so difficult. Trying to remember what I was going to say, without interupting....
Or, trying to tutor... my 5th grade neighbor came down and asked for help with his math homework ( my sons in 3rd grade, and I use to tutor college level math) Trying to explain things, I kept saying the wrong words.
Or having an argument on the phone with my ex-husband... I can't win those... I can't think it through enough to remember. I draw blanks.
I remember when I actually felt hurt when my daughter would get hurt... now I don't feel empathy when she gets a stubbed toe, or banged up knee. I feel like a horrible mom.... But, I know that I am still a better choice than the kids dad.
Posted by lpkayak (Member # 5230) on :
WOW! many of you guys are quite new here but you have taught me so much with this thread
i have so many of the sx you are describing...but both talking and typing are exhausting for me plus the memory is worthless so its hard to "bring up" the thoughts (sx) you have all written so well above.
i do get better and worse with this and it seems to depend on tx that kills bugs...either abx or herbs
also...i think when my cognitive stuff is bad (fog) then my emotional stuff kicks in - mostly depression/anxiety
i never thought depersonalization was a sx for me-altho i am experienced with it from living with someone with it for a few years- and i'm not sure if i've heard of derealization
i think maybe my sx are not as strong as some of you.but they are the same
anyway-i wanted to thank you all so much for this thread. i am going to print it out because my 4 kids do not understand what i am going thru at all. they try. but i don't have the words to explain when they are willing to listen.
you all have described so many things that i go thru exactly (social stuff, organizational stuff) that i'm going to high light your words to explain to my kids
i don't know what the outcome will be.but i am trying to make things better with us
it is the hardest part of my life---the worst thing i am going thru--- to lose closeness with them.
they are good, smart ppl---but more tuned into the mainstream medical stuff so they just don't get it and i am sure some of them think i am just crazy. (i think they are being brainwashed)
they may not start to "get it" until they are older and start to go thru what i am going thru now. my eyes were opened when i realized i was going thru things my mom had gone thru yrs ago and we blamed it on other stuff - not lyme..but it WAS lyme.
WOW! what a thread. so catharic. you guys really need to stick together and help each other out. you really need each other you are so much on the same page.
i really, really , really HATE this disease.
Posted by map1131 (Member # 2022) on :
I will tell you that it can get better. I take Cymbalta for depression. I started at 30mg about 5 yrs ago?
We increased it to 60mg and then 90mg slowly. I had already been doing xanax .25 for anxiety(pain attacks) and get me through being social.
My medicine mgmt nurse told me it takes 120mg to help with pain, according to the manufacturer. Well sure it helps with pain.
It makes me so dopey I couldn't leave the house. So I went back to 90mg. I was seeing a therapist at the time dealing with grief that I still carried about losing my career. 5 yr later.
I don't know if I'm done grieving over my career. I also have some other grief I need to work through.
I ended up on 60mg of Cymbalta. Xanax is part of my pain mgmt. I use tramadol, ibuprofen, xanax to try to keep pain down.
Xanax relaxes my muscles which are very angry. Ibu helps inflammation which is cause of much my pain. Tramadol helps with the lyme pain like my knees, my feet.
Sometimes you have to deal with pain from different angles for relief. I tried patches and other pain killers, I don't want to be drugged and dopey. I'm dopey enough. Like can't talk right, know how to do something or can't remember unless I write myself a note.
I can look forward to seeing most friends and family. There are still toxic people in my family. But I must be with family like get togethers. I just don't spend time around the ones that are toxic.
Same with large group of friends, I hug the toxic ones and speak....I just move myself from their circle.
So figure out how you can get some of your life back. It's important to not be a recluse everyday. Rest, rest, rest before socializing.
After social event, just rest, rest and rest for the next thing. When you become aware who is toxic to you, you might be surprised who is draining from you????
Pam
Posted by thehause (Member # 21237) on :
I'm just looking back at this thread, and how many of you feel like I do - lost, uncertain, confused, spacey - I hope we get better. I miss myself.
Posted by Marnie (Member # 773) on :
Lack of affect or emotional detachment is a major symptom of depression.
Depression = need EPA (OmegaBrite will help)
Mania = need lecithin
Doubt? Google them.
Delicate balance.
Posted by thehause (Member # 21237) on :
what about mental processing speed and that "bright" feeling you used to have when you were awake and conscious.
I believe it is more than depression - it is lyme.
Posted by Dogsandcats (Member # 28544) on :
I went through this. One doctor commented it was like no one was inside of me, dull expression.
I still get it on occasion, but nothing like before.
Hang in there, it does get better....
Posted by thehause (Member # 21237) on :
Dogsandcats - what did you all do to get better? When did it get better / what turned the corner?