The a Emotional Ups and Downs of Lyme, you are not Alone

This is a re-post from May, but it is so relevant to the journey of the Lyme sufferer. When you are so ill that you are barely functioning you literally just live life day to day, because that is all you can handle, I call it survivor mode. When in survivor mode you ignore all the “big” things…all the things that normal people are out there doing because it is just too much, and too painful. So what happens when you start to feel a little better? You realize how much older you are, how many years this disease has eaten away, how very lonely and single you are (at least me), and that your youth was eaten by bacteria…literally. 

   I am in NO way ungrateful, but the emotional toll of Lyme can be equally if not more of a trial than the illness itself. That said, here is my original post:
Feelings and Emotions
Lyme disease can be (dependent on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….
       These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.
        I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).
ISOLATION: It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.
  DEPRESSION AND LOSS OF SELF: Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try. Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself”  I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.
It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.
ANGER: Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin…experiencing physical time passing without reaping any of the benefits those years could have given me.I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.
     Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.
      SUMMARY:So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;
       Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.
     Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.
    Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.
   Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.
     God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield.  He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored


So What DO You Eat?….revisited


So it has been a while since I posted any food from my uber strict diet. I am again prompted to post because I have been getting those questions again…”what DO you eat?”

For any newbies I am gluten-free, grain-free, dairy-free, sugar-free, soy-free, starch-free, …no processed foods or anything artificial.
So for tonight I am eating
Zucchini Coconut Flour bread (yum!)
With chimichurri, egg, and gingered carrots

Dealing With Lyme Related Fatigue

Yep, we’ve all been there/are there, the fatigue that comes with Lyme can be completely crippling. Lifting a leg over the side of your bed can be quite a feat (ha ha). But even 6 months and beyond into treatment fatigue can be overwhelming. Here is a quick video along with supplement suggestions on how to deal with fatigue

Lyme Byte


Yummy Evening Treat

Invented a delicious night time latte;

Chamomile Latte

Unsweetened Vanilla Almond Milk
2 bags chamomile tea
Vanilla liquid stevia
Egg Nog Ice Chips. (

A great treat on a restricted diet


1 year into treatment you can still hit a wall

The last couple months as I have shared I seemed to get over the crest of the hill with the Lyme and have had more energy. However the last few weeks I have been battling an underlying exhaustion. I have done my best to ignore it, to overcome it, to caffeinate it, but today it really caught up to me. I went home early from work and pretty much collapsed and slept for several hours, which really doesn’t normally happen in the middle of the day.

Still, even though I am lying in bed right now after my nap feeling like a good 24 hour relationship with my mattress would be beneficial, I think there is still a distinction between exhaustion and overwhelming fatigue. I am exhausted because realistically during a work week I can’t get nine hours of sleep a night, and silly me I have actually been doing a few things in the weekends other than just staying home in bed. So I am going to listen to my body right now and just rest, I hope it will be rejuvenating enough to kick this exhaustion to the curb for now.

Another problem is I have been making some dietary mistakes. When I am overly tired it is easy for me to each for the wrong food not only because my will power is down, but also because I desperately want to eat for energy…aka things that spike glucose.

Fellow Lymies will know that a lot of us have similar autoimmune anti-candida diets, and these often fall comfortably into the perimeter of the paleo diet (minus the maple syrup, honey and dates of course). One thing I have been reading about on some paleo sites/blogs and also from Dr Mercola is kick starting your system with doing a “fat fast”. Basically you do 2-7 days of getting 90% of your calories from healthy fats, not to exceed 1,200 calories in a day. So you eat several smaller meals throughout the day of almonds, avocado, etc. This gets your body off of glucose dependence and into ketosis (body burning it’s own fat stores). Glucose and energy spikes even out, baseline energy is higher, and (yay) you lose weight. After you are done with the fat fast days you reintroduce proteins and veggies back in but keep healthy fats high.
I am really excited to try this! I feel like it will really help my baseline energy and take off those last 20 pounds. About a decade ago I did a ketone diet called Lindora with great success. This was based more on hight protein, but ketosis was still the goal. After you get past those agonizing first few days where your body is fighting to use its fuel stores, you start to feel amazing.

I do not think this is an endeavor I could have taken on even a few months ago with the Lyme, but I think my body is in a place to handle it better now, we shall see. Another good thing I see is that this may also help the CHRONIC inflammation and water retention that has plagued me for so many years. I will let you know how it goes. I am going to eat my avocado now

Fat Fast article


A Little Help From Our Friends

Image(healthier days…)


A request on behalf of our family. Dear friends, I am making a request on behalf of my amazing parents for some help.
As most of you know our family has been battling chronic illness for many many years, and finally last year my sister and I got an answer with the diagnosis of Lyme disease. Chronic Lyme (unlike immediate diagnosis after being infected) is a long hard expensive battle. By the time the spirochete has been in your body for years it has had the opportunity to bore into any area of your body, including heart, connective tissue, brain…
At that point treatment is very much about targeting the Lyme, but also dealing with it’s devastating effects in the body and supporting an immune system that has been compromised, as well as organs like liver and kidneys, and hormone imbalances and everything else that has fallen apart in the body. We are so blessed that we have good medical care by experts, and praise God we are getting better. But the financial toll has been overwhelming, and both my sister and I are looking at about another year of treatment. I know that it can be very uncomfortable to ask, but I was thinking if each of our friends gave only $10 that would really help a lot.
If you feel led it would really be appreciated. But please know that prayers and support mean the world too!
As difficult as this long struggle has been I am grateful for how God is revealing Himself, and changing me/us day by day.