lymeoutlyndsey

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

Letting Go and Giving Thanks

Letting go is hard

When I was diagnosed with Late-Stage Lyme Disease 3 years ago, one of the first things that I was told by a fellow athlete with Late-Stage Lyme Disease was, “You have to let go of who you were before this illness”.

Although I understood cognitively why they would say that, my mind refused to believe it. Prior to getting sick, I was an athlete with lots of hopes and dreams. I enjoyed competition and pushing myself to always improve. Be faster, learn new skills, or race in a harder category. There was a huge sense of accomplishment I got from racing and being fit. Of course, the shadow side of this was that I placed entirely too much of my self-worth on performance. I think that’s why it was so challenging for me to hear that individual say, “You have to let go of who you were before this illness”. The person I was before this illness was all I had ever known. Slowing down and becoming something other than competitive seemed like it wasn’t an option. It wasn’t something my nervous system knew how to do. Slow down and just enjoy whatever you are capable of even if it’s not your best? That didn’t make sense.

So, I went into treatment with the mindset that I was going to beat this thing and have 100% recovery. I was going to do what I had done before. I was not going to let go of that former life. As treatment started, things were really rough. I was able to endure all of the sick nights and pain, because I was driven. I had an end goal and I knew what it looked like. This was not it. I kept going. I had a standard of life that I measured my days against. As the years passed in treatment, I began to improve. My brain started functioning again and my energy started coming back. The shooting and stabbing nerve pain began to subside. But even with all of that incredible progress, I still was not back to 100% of what I was before and I remained driven.

I would say, for the most part, that drive to be back to 100% was helpful in my recovery. It has been the reason for me not giving up when things seemed pretty hopeless. It has been the reason for me not just fading into this illness. For a while, it seemed like maybe I wouldn’t need to let go of who I was before. That person was wrong, until I realized they were right.

Lately, I’ve been able to ride my bike again and start doing more strength training than I have in about 4 years. Some days are easier than others. I am not even remotely close to the kind of mountain biker I was before, but I am functioning at a level that so many Lyme patients could only dream of. But that standard of my pre-Lyme life was still my measuring stick for success. So, when I went for a mountain bike ride with some friends a couple of weeks ago and had a familiar episode of intense muscle fatigue and soreness about 20 minutes into the ride, I became angry. So frustrated that it made me cry. My body was still not on board with my 100% recovery plan and that’s when I realized I needed to change my measuring stick.

We all have to change our success measuring sticks at some point in life; be it through age, illness, or any other transition. Going through Late Stage Lyme Disease is a massive transition that I was refusing to see. I wanted to be unchanged by all of this and return to the person I was. But that is not the way the universe works. We all know that change is the only constant, but it remains a scary proposition. Yes, I still have symptoms; though they are dramatically decreased to the point of being just a nuisance for the most part. No, my body cannot tolerate intense exercise, lack of sleep, high stress, alcohol, sugar, or dairy the way it used to. Read back through that list. Can your body tolerate those things as easily as it used to? Probably not, even if you don’t have chronic illness. We are animals. We age. We get sick. We die. It becomes necessary to change our perceptions of who we are and how we measure success over time. I am grateful for the drive that has pushed me through the hardest parts of this illness, but I am becoming acutely aware that it is time to let go.

Let go of who I was. Let go of the idea of 100% recovery. We are not the people we were 10 years ago (thankfully, really). Embrace the time I get to play outside in the woods on my bike as a gift instead of a chance to perform. Let go of judgement and anger when symptoms again rear their ugly head. Embrace illness as a side-effect of LIFE. Perhaps the most important: allow myself room for mistakes in this transition.

I am so thankful that I have had the opportunity to recover as much as I have. I am so thankful that I have had the support of such a loving community in my recovery. I am so thankful that I have the capacity to change. I look forward to getting to know the person that I am becoming.

Happy Thanksgiving! I love you all!

~Lynds

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For those wondering about Dr. Smith and Lymestop

Hi folks! There are a lot of you out there asking questions about Dr. Smith and his Lymestop treatment. I just received the message below from a fellow Lyme patient and thought you would be interested in joining this group for more information.

“I started a Facebook group for LymeStop support and information with Dr. Smith’s blessing. I’m hoping those of you who are considering it, or who have already done it, will join. Just look for “LymeStop Support and Information” on Facebook and ask to join. We are a group of patients of Dr. Smith, and potential patients. We’re also discussing other magnetic therapies. Dr. Smith has and his office staff are NOT members of the group, so everyone can speak freely. Please check us out and join. I was hoping Lyndsey would join too, as we could use more people who’ve done the treatment a while ago, not just those of us who were treated recently. I was there with my daughter at the end of July and there are several others who were treated in the last few months. Please join us.”

The link for the group is here: https://www.facebook.com/groups/336036643214013/

 

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LYME RECOVERY UPDATE and a note to those still suffering

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Hi friends! It’s been a long time since I’ve updated this blog and it’s because I’ve been out having FUN and LIVING life! Yay! I am now 2.5 years into treatment for Late-Stage Lyme Disease and am recovering really well. My exercise tolerance and energy level has increased dramatically over the past 3 months. Just as an example, this morning I went to my kettlebell sport class, then went to brunch with some friends, then had enough energy to come home and clean the house (including scrubbing the bathtub). Just 1 year ago, that would have been impossible. I am so grateful to have had such incredible improvement recently. I am still in treatment with my doctor in Seattle. Still on antibiotics and lots of supplements. Also, I had another Lymestop treatment with Dr. Smith at the end of April. I have had a lot of questions about what I think is definitively responsible for my recovery and my honest answer is: I don’t know. I wish I could tell you 100% what has worked so well for me, but since I am doing so many things at the same time, it’s impossible to know. My current treatment regiment includes: antibiotic and enzyme therapy, Lymestop treatment, drinking Asea, exercise, eating a healthy diet, regular infrared sauna treatments, Rolfing, chiropractic care, and regular somatic psychotherapy appointments. I will do another blog post soon about my thoughts on the effectiveness of each of those treatment modalities. I think the combination of many things has been necessary for my recovery. I wish I could give answers to you all about what may be effective for you, but the truth is, you have to listen to your body and find out for yourself.

Lately, I will have days where Lyme Disease doesn’t even cross my mind. I mean, I’m still a slave to pills 11 times a day, but I don’t actually think about how sick I am, because I’m not! It’s truly incredible. The other day, I took my dog to walk a loop that I used to have to break up into segments and sit and rest between slow painful walking intervals; and not only did I have enough energy to walk the entire thing, I started to RUN! I got a couple of minutes into my run and I felt fear start to creep in. Fear that I was going to start hurting soon and that my energy was going to drain and I would have to sleep for the rest of the day. But, as I kept running, I realized that the pain was not coming back and that with each step, I felt MORE energetic. At that moment, I started sobbing in the middle of the woods. (Sobbing and jogging = awesome combo! Ha!) It was like some incredible cloud had lifted. Like I had been released from jail. My joints moved freely and my heart beat to a regular rhythm instead of painful palpitations. I cried out of joy and disbelief. I cried because it has been a long difficult journey to this point.

I also cried because I thought of all of those out there still suffering. Living in pain with no sign of relief. I cried for them knowing that they have a long journey ahead. Knowing that some of them may never get relief. I cried because I wish I could change the effects of this terrible infection, but I can’t. I know you are out there and I know you feel alone. I know you think there is no hope, but I am here to say that there IS! I started running faster and starting running not just for myself, but for all of you out there who are still looking for answers. All of you who would do anything to be able to simply walk around the block. My thoughts go out to you and I hope and pray that you find answers. That you find what works for you. That we will no longer be ignored by the medical mainstream. That the scientific community will put more effort into Lyme Disease research. I am here to say that recovery is possible. You have to do everything in  your power to get better, but it can happen.

Do I know that ALL people can recover as well as I have from Late-Stage Lyme Disease? No. I don’t. Every body is different and every body responds differently to different therapies. All I can do is hope that you find something that works for you and be grateful that I have found what works for me. And trust me, I am fully aware of how lucky I am to be recovering so well from this ugly illness. I wish it were the same for everyone. I know it may not be, but I also know that there are more people out there than you think that are beating this thing! The internet is full of horror stories, because when people start to get well, they are out living their lives instead of posting on the internet. I know that is true for me. So hang in there.

I do still have hard days when I change medications, so I am still actively fighting; but I feel that I am well on my way to remission. Lyme Disease will be something that I manage forever, but I am living a fantastic life. Thank you to everyone who has helped me get to where I am today. I look forward to spending more time doing the active things I love.

I am afraid to announce that I am a Lyme “Success Story”, but I think I just might be. To all of you still suffering: have HOPE!

Love,

Lyndsey

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You have all saved my life!

Hi folks!
I just wanted say thank you for contributing to the success of my fundraiser! If you ordered one, you will receive a card from me over the next two months. If you ordered a ukulele song, I will attempt to “the band” together before the end of the summer. I will post videos here. I can’t wait! I am overwhelmed by how amazing my community has been and continues to be. I am forever grateful and in awe of what is possible when us humans come together. I would not be able to be the Late-Stage Lyme success story that I consider myself to be without your help. You truly are amazing and have played a direct role in changing my life for the better! With the money raised during the fundraiser, I will be able to make it through the next year of treatment. My fingers are crossed that after that, I will be finished! You should know that my health has been better than ever lately. I have been able to start riding my mountain bike again a couple of times a month and am training for a kettlebell sport lifting competition in September. I am back at work and feeling alive. I am not 100% symptom free and I still have some struggles, but I am leading a really good life for somebody with Late-Stage Lyme Disease (heck, I am leading a good life for any human). I look forward to updating this blog as my journey continues. My thoughts go out to those still searching for answers and suffering. This illness is really serious and continues to grow every year. Please protect yourself and your loved ones to the best of your ability. I thank you all from the bottom of my heart for having faith in me. Your support has been tremendous.

So much love to all of you,
Lyndsey

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Win this painting for $10 and help me get well!

For every $10 you donate, your name gets entered once into a raffle to win this gorgeous watercolor painting by Cheryl Long. Click HERE to enter! The raffle ends in just 4 days!

https://www.indiegogo.com/projects/no-rules/contributions/new?perk_amt=10&perk_id=1998201

Snowy Owl450

To see more of Cheryl’s beautiful work, go here: http://www.cherylrlong.com/

 

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I need your help!

Please watch this video and help if you are able! Please share my story in any way you can. If I reach my goal, I will donate $1,000 to the LymeLight Foundation to help a child in need. I need your help to finally beat this thing for good. Thank you from the bottom of my heart.

Click here to donate  or visit:

https://www.indiegogo.com/projects/no-rules/x/6191861

No Rules from Lyndsey Needham on Vimeo.

 

I will be back to regular blogging when my fundraiser is over and I’m looking forward to sharing new information with you all. :)

Much love,

Lyndsey

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This is me. Please watch and share.

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Learning to be Vulnerable

Hi friends. Part of living with chronic illness is learning to be vulnerable. Today, I have done quite possibly the most vulnerable thing I have ever done. Please take a look at the link below. Watch the video and help in any amount or way you can. Please share with everyone you know, post on your blog or website. Any way we can get the word out there. My promise to you is that I will continue to fight for full recovery and will continue to share what I have learned in my journey so that it may help you. I will continue to support Lyme research and those in need. Thanks for reading.

So much love and gratitude,

Lyndsey

https://www.indiegogo.com/projects/no-rules/x/6191861

Lyme out shoes

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A Link For The Young Ladies… I Have Lyme, Can I Get Pregnant?

lilneeds:

Having 5 friends that are pregnant at the same time has made me wonder about starting a family of my own some day. I am just now starting to research Lyme and pregnancy. There are LOTS of questions out there that have not yet been answered with solid research. I’m hoping we get more answers in the next 5 years so that I know what my options may be. Here is an informative piece. Good information, though, I don’t like the part where he says that many Lyme patients who complete treatment relapse at some point. The ugly truth about this ugly disease, I suppose.

Originally posted on My Color Is Lyme:

Because there is documentation of Lyme being transmitted prenatally by a mother to her child, having children when you have chronic Lyme is a huge concern. Here is a great article talking about this and the steps to prevent transmission.

http://www.treatlyme.net/articles/2014/2/3/lyme-pregnancy-will-my-baby-get-it-what-about-my-health.html

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Read This!

This is one of the best articles I have seen written about Lyme. Read it and share it!

http://news.nationalgeographic.com/news/2014/02/140228-lyme-disease-borrelia-burgdorferi-deer-tick-science/

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