My journey through Lyme Disease- Healing my body and mind.

I am a Delicate Flower

on November 6, 2015

I know my updates lately have been regarding my awesome recovery, but it’s time to get more real about my continued limitations also.  Lately, since I have been feeling better, I’ve been pushing my body more and practicing self care less. My diet has been less strict, I have been working 40 hours instead of 35, I have increased my exercise, decreased my sleep, and decreased the amount of time I spend in quiet meditation, practicing yoga, or doing infrared sauna treatments. Basically, I’ve been doing what “normal” people do. It’s not working.

Self care takes time. Quite a bit of time, actually.  It’s time that most of us don’t have since we are expected to work at least 40 hours a week and many of you not only work full-time, but also have children to care for. (Sidenote: How one works full time and also cares for children is a total mystery to me. You deserve lots of awards and a hero cape, etc.) Personally, I believe our system is very broken. Working 40 hours a week is not healthy. Sure, I know many of you work 50+ hours per week and you’re probably thinking I’ve got it made with my 40 hour job, but I think it’s time we get more realistic about what we deem normal. Anyways, that’s another discussion for another time.

Back to living with Lyme post-treatment:

My body has not appreciated my new schedule. Some old symptoms have crept in this month. I have a strange rash on my neck again, my joints hurt (hips, knees, ankles), my muscles are achy, and I’ve had a few nights of consistent drenching night sweats. Granted, these symptoms have been minimal and not nearly enough to hold me back, but they are gentle reminders that although I have gone through treatment and am successfully in what I would consider remission, it is a state that must be maintained.

I often have folks ask me, ‘so, have you recovered 100%? Are you back to your old self?’ It’s hard for me to answer those questions. It’s not straightforward. Yes. I have recovered, meaning I have a “normal” life again. But no, I am not back to my old self. I can’t eat whatever I want, I can’t drink alcohol regularly, I have to sleep WAY more than most everyone I know, I have to manage my exercise differently (can’t go all out), I can’t keep up with people that I used to keep up with on my mountain bike pre-Lyme, and I will never be a workaholic, because my body won’t let me. Basically, I am, as my partner lovingly says, a delicate flower. I’m not so sure about the flower part, but delicate, yes.

It’s hard for me to accept this fact sometimes. I want to be able to go back to my old self and be somewhat indestructible. Sometimes I feel ashamed at the fact that I struggle to work 40 hours a week. Sometimes I feel insecure about going to do things I love like mountain biking or riding my dirt bike because my endurance is less than stellar. What I am realizing is that these insecurities are things that everyone can relate to with age. You don’t have to go through Lyme disease to watch your life change in ways that you may want to resist. I live most days not gripping and resisting these changes, but some days not so much.

The point of this post is twofold. First: once you are through treatment, the work is not over. Second: to all of you out there expecting to come through Lyme Disease treatment as the person you were before you were infected, you may be disappointed. You may be disappointed that you won’t be able to physically or mentally perform the way you could pre-infection. It seems many of you have taken my progress to mean you will be the person you were before Lyme Disease, and I feel I need to be honest and say that is likely not the case. But don’t let that be discouraging. You may not excel in physical ability and you may not become president, but you will, without a doubt, learn so many incredible things about yourself that you will live a life more fulfilled. This post isn’t intended to be negative. Just honest. When I first started treatment, a fellow-Lymey said to me, “You have to let go of who you were before.” That remains the best advice anyone has ever given me.

(Fine Print that isn’t actually fine print: This of course is my experience and seems to be the experience of many Lyme patients I know. HOWEVER, there are some professional athletes who have gone through treatment and are back to 100%. It doesn’t mean my experience will be your experience, but discussions with several Lyme patients recently regarding my recovery has prompted to me to be honest about what things look like for me post-treatment. That is all.)

4 responses to “I am a Delicate Flower

  1. ksmargeson says:

    Brave post, Lyndsey. I bet you feel some pressure for a completely rosy picture, huh? I suuuuper appreciate an honest view of life post treatment. The further into this I get, the more I realize this is probably a whole life change more than a temporary period of good behavior. I think it’ll help lots of people to hear REAL recovery stories like yours. Thanks for telling the truth.

  2. D'Ann says:

    Ahhh, thank you so much for your honest update. I like the honesty. I remember you mentioning “let go of who you once were pre lyme/illness” . It hasn’t been easy but I’ve let go. As a matter of fact I fell asleep the other night meditating on letting go of who I was. Thx for your update 🙂

  3. Dee says:

    Have you been treated for Babesia? The night sweats/ relapse could be indicative of other infections from the tick bite. I have multiple myself and hear you won’t recover fully unless you treat all of them. It’s been hard thinking I may never fully recover too. I caught after two weeks only and I’ve been sick for 6 months now, while getting treatment. I still have hope though.

    • lilneeds says:

      Hi Dee. I have been treated for Babesia. And Bartonella. I beginning to wonder if the night sweat thing is hormonal, since it typically occurs at the same time every month. Hard to say. This last month was super mild. No towels in the bed. Ha! It comes and goes.


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