When did you improve? Long-haulers!
I’ve written on here countless times over the past 1.5 years (since my reactivated EBV diagnosis) and want to start by saying thank you for being such a supportive, helpful community!
For a little context, I’m 22F and have had mono since January 2025. I had to medically withdrawal from college and basically change my entire lifestyle in an effort to recovery. I stopped drinking, smoking, exercising, partying, traveling, made diet changes, etc etc. I started seeing a holistic doctor, was put on supplements, etc. Still, 1.5 years in, I deal with fairly intense flare ups of migraines, throat aches, muscles aches, fatigue, anxiety, insomnia… the list goes on. It’s very cyclical as well, and some symptoms are more frequent/ intense than others.
Having just graduated, I have an opportunity to be unemployed/ without major responsibilities the next few months. I want to focus on my diet, meditation, nervous system healing, limiting screens, etc… basically breaking all the “poor” habits I have yet to fully commit to! At this point, I’m VERY aware that this illness presents itself differently for everyone, and the recovery is non-linear. But I do have a question for people that have recovered after 1 year+ of symptoms…
How did you manage to cross that bridge? My fear is that I commit my lifestyle to healing, and do see improvements, but then can never eat sugar or exercise or drink a glass of wine or anything like that ever again. Obviously, making an intense commitment to lifestyle changes is going to make me feel atleast a little better, but is it sustainable? Truthfully, after 1.5 years it’s hard to even imagine my life without this bullshit!
Please give me some hope, or any tips or ideas to keep me motivated to healing. I’m losing some steam because my progress is so slow (if i’m even progressing at all). I’ll have a few weeks of feeling good and then BAM, horrible flare for a few weeks. It’s so discouraging, frustrating, and hopeless.
Also, if you’re someone that’s been dealing w this for MANY years please do me a favor and don’t respond. No offense, it’s just that sometimes I post something like this and get a response like “I’m on year 12. No changes.” While you’re in my heart, that is incredibly discouraging for a girl looking for a little courage.
Thanks.