I have been suffering with primarily neurological symptoms (cognitive impairment, depression, anxiety, insomnia) of Lyme/Bartonella for 1.5 years. I was diagnosed about 4 months ago and am finally receiving treatment (anti-microbials, lymph drainage, Rife machine, and neurofeedback). I was the most social, adventurous, and vibrant person prior. The symptom which is most confounding to me is fear/lack of desire of being alone. While I’ve always been a social butterfly, I was never AFRAID to be alone. I recently moved back into my own apartment after humbling living with my parents at age 50–and even though I feel socially awkward with not much to contribute right now (worked as a professor, owned my own research & training company, traveled the world, etc.)–the thought of not having plans or being alone in this apartment is almost irrational. I am in therapy to deal with this and the other life-robbing (may they be temporary aspects of this disease. Have others of you dealt with this reality and feeling? I try to get busy with the gym, yoga, meditation, social plans whenever I can, and bits of work on which my brain can focus. Any advice or recs?
I just posted about this!
The biggest thing this disease has taken from me is my personality. I used to be so adventurous and vibrant as well! I feel as though I pushed my family and friends away because I was always so down about the disease or I did not feel well.
I understand how you are feeling completely. Though we have very different complications (mine are thyroid issues and allergic reactions), I am happy to be here as a friend if you ever need one. No one should have to feel alone through this process-it is a very scary one.
I am so sorry to hear about your journey, and hope that it only gets better and better.
I have a few tips that helped me:
exercise (you said you already partake)
hiking (as weird as it is, I love being in nature with the little ticks because it is so peaceful)
recordings/podcast (I started talking to my phone haha weird- but It helps to let it out, I also think I may turn them into podcasts because listening to podcasts about lyme helped me quite a bit)
Listening to podcasts ( there is a bunch of good ones! just search lyme- you realize there are millions of people just like you, helps to not feel so alone)
Lymelesslivemore (this is a website- it has diets and helpful tips/treatments for people dealing with lime) should be lymelesslivemore.org or just google “Lyme less live more”
Write a book (channel what you need to talk about into writing, and write about your experience- your journey may help someone else in need! I started writing about my journey and just like the recordings it has helped a lot.)
I hope some of this helped! I am always here if you need a friend. Best of luck
How kind of you to respond. I truly appreciate your taking the time to share your experience and tips for healing. My laptop is about to die without a charger so I will write more once recharged :).
I’d love to connect via phone/Skype when a moment avails. Sending you continued healing and all positive thoughts,
the system automatically removes phone numbers in order to protect members’ online privacy and security. It is a wise precaution as this site can be read by anyone on the internet, not just members. For the same reason I’ve deleted the last part of you Skype address.
But fear not! The quick & secure way to share contact details is to send a personal message to another member, or to suggest that members pm you if they want that information.
Hope this works for you,
Christina from Moderator Support
Hello, I am new here. I can relate. I think it is so easy to feel alone when one is preoccupied with one’s health & all the things we need to do to combat this disease. I think that others in my social circle may not understand when I can apparently look okay but inside may be tired or hurt. I also think that they do not want to hear me complain. Also it is a very confusing disease. Sometimes I wonder if it is all in my head & I am turning into a hypochondriac. I am 68 years old and wonder how much is just aging. The blood tests say that I have four tick diseases. Riding my bike is the best thing to give me energy and just being out in social situations makes me forget. I wish you the best. Please be kind to yourself. So happy I found this group. Diane
I totally agree with Allies…writing is so therapeutic. I have been ‘Lymed-up’ for 4 years and just recently decided that I would write about my experience as a way to help others understand Lyme. I also share my experience and what I now know about Lyme to give awareness. As I write about my experience I can actually see the headway that I have made with this life changing disease… normally I feel like I’ve in a place of no hope. Writing also gives me the feeling that I’m being productive and I have self-worth… normally I feel worthless. I believe we all have individual stories that should be heard. And… when your story is heard (read) you feel as though someone is listening. Before Lyme I would not have picked writing as a hobby but it brings me joy in a body that rarely feels that anymore. I publish my writing on Medium. I have written two short series and I’m onto my third. If you need ideas you can find my stories by searching for me Stacy Cellier Gomez or Lyme. If you read my story please clap… the claps keep me going. If you decide to write at my writing hangout let me know I will cheer you on with claps too:clap: