The good from Lyme

A year ago I was reading blogs and watching videos, listening to people talk about how Lyme changed their life for the better. What a joke! I was bitter and angry. I felt Lyme was the worst thing that could ever happen to me. It's taken away my independence, my security, my freedom, my health, my entire life. Because of Lyme I had to cancel a trip to Italy, I've stopped working. Only a few people have come to visit me in the last year. One was an ex-boyfriend who lives in Thailand!

However, recently, I've started therapy. My therapist has shown me that in fact, I'm getting a lot out of Lyme. This forum, for example, has been my saving grace. You people have been here for me when no one else was. I feel a sense of community - something I have never had before. I frequently talk with people on Instagram, we check in on one another. When I'm feeling bad, they send me little messages of encouragement. I've never had that before. I've also started thinking about how my life revolves around my family. Lyme has forced me to take care of myself, to put myself first, to stop worrying about my crazy family and all their drama. Lyme is teaching my husband how to be a better caretaker, to think beyond his work and kids and all his own drama. Lyme has also shown me who my real friends are. It's cleared the clutter. I have over 100 friends on Facebook, people I know personally, and none of them have come to visit, none of them ask how I'm doing.

I'm not totally sold on Lyme being the best thing that's ever happened to me, but I can definitely see how it's changed me for the better. And I've *just* started therapy. I'm still working on it. Lyme is forcing me to look within. I'm still a work in progress, but I really think if you can afford it, you should seek therapy to help you through this. We all need someone to talk to and Lyme is a lonely, scary disease. It's been hard getting over there every week, but it's always worth it. I realize I'm not fighting Lyme, I'm fighting myself.

Anyway, I wanted to share with you all, especially those just starting out, those who are struggling. I'm feeling pretty good the last few days and I want to stay that way. You never know what Lyme will bring, but the most important thing you can do is really take care of you. I'm definitely out of my comfort zone here, but I think that's a good thing.

Peetza, that's another thing. I have way more compassion for people. My husband was complaining about a woman using a handicapped parking space and she didn't appear sick and I said, "I don't appear sick!" and we both sort of realized that sick doesn't always show on the outside. I do look at people differently now, in a good way.

I'm new here, but I can honestly say that participating in the forum is very therapeutic for me. Being able to share my experiences with people who might actually understand what I'm talking about is very helpful. I talk to my parents, but they can't relate, and I don't like overwhelming them. I don't really have anyone else to talk to.

I get even more benefit from helping others here. Writing is something I used to be good at. A few times I've written posts and could tell my mind was clear and the words seemed to flow effortlessly. I've gone back and re-read what I wrote and it was like I was reading someone else's writing and I got help or encouragement from reading it again. I hope I'm making sense.

I also have more compassion for others, especially those with invisible pain and those with mental issues.

I have mold in addition to Lyme, so I have lost a lot, more than some and less than others, and I'm still losing. I have pretty much lost control of every area of my life. At times the feeling of utter helplessness is so overwhelming. I still deal with anger and resentment, especially towards the medical establishment. God's still working on me 🙂

WV Mike - Dang it! So sorry you're back in the hospital...

Are you going to slow things down a bit with your treatment?


Hope all the testing goes well...and you feel better soon!

WV Mike said...
Thanks girlie. Yes stopping all meds except rocehprin and cutting its dose in half. It is what it is. Sooner or later i'm going to catch a break. I wish they could put in a medically induced coma and wake me up when it's all over!

I was just thinking about the past 4 years...and thought what a nightmare it has been. Trying to explain it to someone...words don't do it justice...really.
The multi-systemic symptoms...and never knowing at what point we should be going to the Dr. or the ER to have something checked out.

The doubts about the treatment...wondering if it IS a serious side effect and not a herx. Questioning, questioning...

The unknown - when will I be able to resume my life again...because really...this isn't my life...I'm just stalled out - waiting ...hoping...that I will get my life back one of these days.

Sorry for the rambling...I'm in a melancholy mood right now...can ya tell? lol

By the time I got my diagnosis, it was beyond obvious that something was VERY wrong. Of course, I was hoping it was hormonal or autoimmune ( thought it was likely both) and something I could 'fix' with lifestyle & diet changes.

I had long suspected Lyme, I'd asked every doc I had from age 17 up to test me for Lyme, but none of them thought it necessary until I was really bad off. Therefore, I eventually convinced myself that if I did infact have Lyme it was in addition to these other issues. At some points pre-diagnosis I even wondered if I had cancer...I was so sick that it took me over 8 months to get out of bed to get my Lyme test, even though I desperately wanted it!

So, when I finally got my diagnosis, it was something of a gift. It was such a relief to have a concrete diagnosis- and to find out it was 'only' Lyme...Even so , i have had to work through feelings of anger & frustration at all those docs who refused to test me when I was presenting almost all the symptoms! I was also disappointed that it wasn't something I could fix w/ diet changes.

I've lost pretty much everything that I loved & had worked my entire life for because of this disease. These are not things I will easily be able to restart/ regain once I'm healed. They were also the things that made my life happy & fufilling.

I go through spurts of being grateful for a diagnosis, wishing I'd gotten it sooner , & just being too sick & exhausted to be able to focus on what I've lost. I do have moments of crushing loss though. Overall, I think once I'm feeling somewhat better I will have to process more of those types of emotions. At that point I do think therapy might be helpful.

I agree that this forum has been a really good part of having Lyme! I also agree about finding out who your real friends are very quickly with this disease. So many people I thought were my real friends just turned out to be ' good time ' friends. I don't miss them! I do appreciate the ones who have stuck by me all the more!

I think Lyme has also taught me to say 'no' - something I had a lot of trouble with before. It's taught me the difficult lesson of admitting when I'm unwell & unable to do things for others( and myself) it's made me much more humble. I always used to overextend myself, and it caused me a lot of stress ! I realized this was a problem, but wasn't able to stop doing it- until Lyme forced it on me. I've found the people who've stuck by me are really understanding when I am unable to do things - they don't even seem to get mad!

I'm also sure that when I start feeling better I will really appreciate it!!! And not let the little things bother me like I used to...