I know there is evidence or theory that one can have symptoms of PTSD from the lyme but I would like your feelings on PTSD due to having lyme.
I have had lyme for so long now my mind has taken a pounding. Although I don't think you necessarily have to have it a long time to feel traumatized by it.
I don't mean to bring strong feelings to anyone unless, of course, you need to vent it out. I do know the trauma has affected all of us.
Maybe this post can also be one of good tips that anyone may have on letting go of the past even though you still live it.
I do plan on going to a therapist that does EMDR. This has helped me in the past to relieve the past.Staying in the present can be hard for me sometimes. I have had this stupid illness for over 20 years. I try not to dwell on the losses or the past but sometimes I get in my own way.
What helps you to move forward and not look back?
What helps you to find that comfort zone or contentment while being so ill?
What helps you to forgive those who didn't believe when you were sick?
I am lucky to have such a caring husband. He helps me get though alot of it.I think it's time for me to write a gratitude journal.
Posted by Robin123 (Member # 9197) on :
I wouldn't call it "post" with us - rather like "present".
I think it's a process - dealing with the illness, dealing with who we are other than the illness, dealing with relationships. Realizing that others may not "get" it and figuring out how to deal with that - address it or let it go.
Limitations and still-present abilities. How to do what we can still do, albeit in a modified version.
Posted by bellajo (Member # 28738) on :
I know that my experiences were traumatic. Before I was diagnosed with lyme, I ended up in the ER twice and was treated as though there was nothing wrong with me. I would believe most of us have had experiences that could lead to PTSD.
How to forgive all those medical professionals, friends, colleagues, etc.? I'm not sure. I think writing/journaling may help. Maybe write letters that you don't send or send if you feel like it.
Finding comfort is tough. Support is crucial, but not always easy to find. I'm not sure most therapists would understand this horrible disease. Cognitive-behavioral techniques don't work because this disease affects our brains.
I read once that people with lyme do better if they don't become obsessed with the disease, rather they just live their regular lives BUT that's hard to do.............
Posted by Lymetoo (Member # 743) on :
What helps you to move forward and not look back?
What helps you to find that comfort zone or contentment while being so ill?
What helps you to forgive those who didn't believe when you were sick?
---
God
Posted by fflutterby (Member # 28081) on :
Good answer Tutu.......... So true
Posted by Robin123 (Member # 9197) on :
I feel better from taking some action. When I found out I had Lyme, I either called or emailed all the medical people I had seen. I had my records changed to reflect the new info. To be an active participant instead of the victim I had been feels goooood...
Posted by darwinsdream (Member # 30314) on :
Thanks everyone for writing. It sometimes just feels good to know I have that common bond with others. Even though I don't know you personally, you all have a special place in my heart.
Robin - I like how you put it - not "post" with us - rather like "present" I guess this is also why it is so difficult.I sometimes have to keep in mind that the present can be hour to hour.
Bellajo - You are so right,in my opinion, including your last sentence - "I read once that people with Lyme do better, if they don't become obsessed with the disease, rather they just live their lives, BUT that's hard to do..."I agree. Although during times of crisis, I do find myself spending alot of time seeking for answers on how to get better.I guess a good cry is good during those times and when I'm feeling well enough I sure make up for it with some good laughs.Amazing how we can bounce back so easily after a crisis.
Lymetoo - Thank you for reminding me God is always there. He has been my savior all along, although sometimes I fail to give him the time I need to stay close. Thanks again for reminding me. I needed that.hugs for u and flutterby too.
Robin - Thank you too for reminding me how strong we are by taking the action we need to survive and do it with grace. Although i do feel that many here, including me, feel we may be victims and active participants. But, we all have that fighting spirit and none of us here ever act like victims. I never really like that word victim anyway.
Thanks again for adding to this topic. I guess I'm feeling pretty weak right now. This past year, with me moving from NY to AZ has been quite a change for me. It's taking me longer to adjust than i thought it would.You all are helping me, more than you know, to get through a difficult time in my life.Hugs all around.
Posted by lymeladyinNY (Member # 10235) on :
I feel less and less able to cope. I had two wonderful years of few bedbound days, but this year has seen deterioration and I'm in bed a lot again. I do feel traumatized by this turn of events. I'm more hopeless, wishing more and more to die. I can't get anything done though I have quite a few obligations.
I don't feel like talking or dealing. I just want to sleep and wake up feeling better. I guess I'm depressed as well as traumatized. Sorry to be in the dumpster but have no strength to get out of it. I feel I have no patience for the illness anymore. I have been traumatized too long.
Posted by darwinsdream (Member # 30314) on :
Oh, I feel so bad for you to feel this way. I also can relate as i have felt this way many times.
I know for me, since I've lived in NY, the summer and winter are the worst. When the weather starts to get cooler, you should feel more energy and less depressed.
Be really careful about not getting re-bitten again also. I know when i was in NY I kept on getting re-bitten and that's one of the reasons why i left.
Right now with AZ being so hot and humid sometimes it's really kicking my butt.
For me, I need to give in to it somewhat. i can be my own worst enemy because my doesn't stop wanting to do more. When i accept my limitations I do better mentally and physically.
Coping on a daily basis is hard, but we do it.
Please don't wish dying that will only bring your immune system down more. Find that fighting spirit while accepting. You will get better.
Posted by lymeladyinNY (Member # 10235) on :
Thank you, Darwinsdream. I have been feeling better today and thus have been in better spirits. I just can't seem to tolerate the painful, bedridden days anymore.
I was bedridden for years when I was first sick. It seems a cruel trick to find myself deteriorating after being able to get up and out again after missing out on days and days of my life.
I dread this winter because of the viruses. When I pick up a virus it goes straight into viral meningitis, which takes me several weeks to recover from. Last winter I spent 5 months in bed because of it. I would like to move somewhere warmer like you have done, but with a special-needs child, I am likely to stay where he is (in NY).
Take care - Julie
Posted by darwinsdream (Member # 30314) on :
Julie, that must be awful have a virus go into Viral Meningitis. I know,it is hard to miss out on so many things that we want to do. Instead having to be in bed. is there any way you can arm yourself before the winter comes?
There are so many knowledgeable people here that may be able to help you. I'm in awe of how many people here have such good knowledge of herbals,etc. I feel like I often find out more useful info here than going to my LLMD.
I read a book a while back called "A delicate balance" Living Successfully With Chronic illness"by Susan Milstrey Wells I think it's time for me to read it again. I remember a part where she talks about self talk. We are hardest on ourselves and any one with chronic illness can tend to put ourselves down. Certainly not meaning too, but, you know, am i being strong enough? or when you watch a movie and someone is dying of cancer and they go out with such grace - why can't I be as strong as that person? The book leads the person in a direction of more positive self talk. Not to say we're never positive, but rather too hard on ourselves.
My daughter, age 22, was born with Lyme and still has it. So, like you, I've been sick, raising a sick child. I bet, like me again, you can say what a strong person you are. And, yes, there are always going to be days when we don't feel so strong. I think that's normal also. Maybe the self talk in those situations would be to say - I do feel lousy today and I hate it. Know that you conquer so much feeling so ill. The conditions we go out in sure makes to common cold look like a piece of cake.
Posted by missing (Member # 22437) on :
volunteer,
but since we are too sick,
while I lay in bed writhing in pain,
i decided to start a blog to try to help others and to be a friend, I even paid google a little bit of money to advertise
pray, read Bible
write replies to our posts here as much as possible,
two years ago when I discovered this place, it was a life saver!
I am here a lot looking for help and friendship,
I am so lonely and abandoned, and the pain is so bad that for 4 years I screamed in pain, all day everyday
Posted by lymeladyinNY (Member # 10235) on :
Oh my G*d - screaming in pain all day, every day?? Missing, I had no idea. How did others respond to this? I know that I was berated by nurses and doctors when I screamed in pain at the hospital. I was told to stop my behavior.
Did others treat you with disdain and disbelief? It's so sad. I give you so much credit for reaching out to others through such misery.
The book by Susan Wells sounds very interesting, Darwinsdream. Yes, I've gotten a lot of advice, support, and friendship here at Lymenet. I've been a member since 2006 and check the site every day. I sometimes go for a long time without responding. Sometimes it's too much for me - I guess at those times I'm more in need and perhaps more self-involved.
Payne, you and Albert Einstein could not have said it better - thanks for the reminder. Posted by 4Seasons (Member # 14601) on :
I think EMDR is a very good idea for PTSD. I did it a few times in the past and it works.
My daughter is suffering from fairly severe PTSD, due to her three years of horrible Lyme hell. She will not say the word "Lyme" or discuss that period of time at all, ever.
I worry so much about her. She is healthy, though still IgM positive. I am afraid she will ignore symptoms if they return.
Her LLMD who was so helpful when she was sick tried to strong arm her into dealing with it, which didn't work at all. His words about what could happen scared the wits out of me, though.
We have changed to another doc who is working to establish a rapport with her so she will trust him and feel independent of me.
Still, I can't believe all that we went through and none of it can be discussed or victories celebrated. I hope that at some point she will be able to process her experience more healthily. I wish I could get her to see a therapist or do some EMDR.
Her current doc says everyone with Lyme suffers from trauma from it. I believe it!
Posted by Garbagedump (Member # 26546) on :
I can tell you that PTSD symptoms can, and do, manifest during and post-lyme. A mental health professional told me that she had observed symptoms in me post-Lyme. She felt it was PTSD, though I seemed unaware of it. It may even had contributed to the demise of my career, but can't blame it totally on PTSD. It was a contributor.
Posted by Tracy9 (Member # 7521) on :
We have groups in www.lymefriends.org on PTSD and discussions that are lyme related and non lyme related. There are some excellent posts and resources, a couple different groups.
![[Smile]](smile.gif)