It is hard to know if and when I was sad over the three years I was unknowingly battling Lyme. I believe there were many days of frustration but the fact that I thought it was something that would pass, generally kept me distracted from the mounting problems.
What has surprised me in reflection is the lack of sadness in the last months that my condition rapidly deteriorated. I became so accepting of my situation, which seems quite unlike myself. I did stay very focussed on what I could do instead. As fitness became impossible, I started walking. As walking became impossible, I started painting. As painting became a disaster (funny story for another day), I started putting away at all the little things I could do to keep myself busy. I stayed focussed on what I could do…until my mind started to fail me. That became insurmountable because not only could I not think of what to do, I was having trouble just thinking.
Here is the shocking thing that started to happen in this process. As I fought to find things I could still do, things I still had in my life, things that gave me purpose, I realized I had more than I ever knew before. As pieces of me were slowly stripped away it unveiled all the things I took for granted. And maybe I didn’t take them for granted, but I didn’t take the time to consciously consider them and be grateful. Which in truth is taking them for granted.
As I sat outside wondering where this unknown illness was going to take me, whether I would be walking on my own much longer, I noticed the incredible 100 acres of natural view I had, the mock orange tree my mother in law gave me that had grown into a huge beautiful tree, the willow that reminded me so much of my friends father, the amazing rock terrace my brother in law built, that replaced the pool that my daughter spent countless hours in, the rock sandbox that my son spent countless hours in, the shed, porch, deck that friends and family not only helped us build but spent many days and evenings, sitting in, on or around. The list went on and on, so many things, the spruce trees we transplanted that acted as goal posts for my daughter billion soccer shots, the open lawn that made way for my son’s billion football plays. Meanwhile, my daughter is out for a jog on the country road and my son is on the tractor helping his grandfather in the backfield, my husband is cleaning his ATV (again lol)…if all I ever do is sit here, I am so blessed. What I am so sad about, is why did so much have to be taken away for me to clearly see all of this.
I am glad that I had those moments and days of clarity because I was also lucky to have found a diagnosis, support, and treatment shortly after this. I think the saying must be true “to get what you want in life, you must first appreciate what you have.” Although I still have a way to go in my recovery which is filled with highs and lows, I know that I have so much to be thankful for. I know that if this is as good as I get, I am blessed. I know I have friends, family and a community that supports me and that in itself, is all I need to have a purpose. I don’t know where this Lyme road will take me, but if all it does is take me to where I am today, I will be just fine.
The really interesting thing about Lyme, especially for women, that I have learned, is how badly it affects their hormones. My husband will likely say he didn’t need to be a scientifist to prove that one. I understand the bacteria feeds on the hormones and creates incredible imbalances. For years when I was “googling” all the possibilities of what could be wrong with me, hormone imbalances certainly frequented the list. So, if this blog sounds like my journey has been all rainbows and lollipops, I am sorry to mislead you. That is certainly not the case. Funny enough the hormone imbalance became most obvious in recovery.
My first effort at recovery was with antibiotics. It was clear right from the start that they were working because symptoms started to disappear. Although the antibiotics would not work for me in the long run because of many adverse reactions to them, they sure made a dent in the bacteria and started my recovery. Yet, it took me a few days to realize what was happening. Sometime between 8:30-10:30 every morning, I would cry. I don’t mean for this to be upsetting to anyone, it became a bit of a game with me. It took a few days for me to realize what was happening. I might be writing this blog, cleaning up something that spurred a memory, something someone said wrote, sent me, did and I would start to cry. It wasn’t the kind of sadness you couldn’t hold in, so I just let it out. I started to accept it was going to happen each day and gathered curiosity in what it would be that would set it off. It kind of became part of my schedule as silly as that sounds.
What I did learn in all of this is that as the Lyme was being attacked by the antibiotics, the hormones were not being attacked and were gaining a running start at rebuilding, balancing and restoring their normal status (as normal as possible with me lol). Like clockwork, I assume somehow correlated to when I took my antibiotics, I would have something hit me deep inside and make me cry. It felt good, was healing and then started to transform into the most profound gratitude I have ever felt in my life. It started with sadness and then would feel more like gratitude and then it became the gratitude that made me cry… “a good cry” as they call it. It is a lot for me to admit this. I am usually one to hold it in, hide the sadness, or at least deny the cry. But I somehow believe it to be a monumental step in my recovery. It didn’t allowed me to deny any worries, fears or sadness, it had to come out.
So as I approach three and a half months into recovery, I have to admit it doesn’t happen very much anymore. I guess this is as balanced as my hormones will ever get (oh my poor family hahaha). But it has made me realize that on the other side of sadness is something we work very hard to achieve in life and that is gratitude despite the situation. I have seen how the most giving, grateful and generous people are often the ones that have lost so much or had to fight for what they have. I now realize why, when so much is taken away, you are able to see how much you have.
I have decided to find the gifts in this process and this is certainly one of them. Sadness, fear and vulnerability don’t scare me anymore. I have gotten better at accepting help and support because I know when I am better, I will give it back. Somehow deep inside, I feel this disease is going to give me more than it ever took away.
I have also decided to quit waiting until I am better to do things. I was waiting until my anxiety got better to head out in crowds, for my energy to come back before I went out for any length of time, for my brain fog to dissipate before I just went out. But I have since decided to live with the Lyme as it presents itself each day. I have gained many coping mechanisms to deal with the remaining symptoms, so in case this is as good as it gets, I may as well put them into practice. I can’t keep hiding at home waiting for this all to be over. It just doesn’t work that way. I believe if I can accept where I am today, it will only get better from here. If I am grateful for where I am today…it will only get better.