What Lyme took away from me and my family?

What Lyme took away from me and my family?

I have known something was wrong with me for a long time. As this part of the story is similar for the majority of the Lyme community, I got diagnosed 9 years into my initial tick bite. I started my journey to cure 1 year 4 months ago. Since then, Lyme took a lot of things away from me and my family as it usually does to many fellow Lymeys. I’ve decided instead of showing my strong side to the community, it is time to share all my lows and trying times with the Lyme community, with all the spouses, moms, dads, and siblings who are in the supporting role of a Lyme victim, with my family and friends and last of all with my internet buddies. I believe sharing my family’s troubles doesn’t make us weak. It helps me and my family get stronger to see what we have accomplished and how strong we are. Here goes nothing. Welcome to lows and struggles of my family.

Facing Lyme Everyday – Emotionally

There was a 3 months between the initial doubts of Lyme and getting the test results from my lyme literate doctor (LLMD). Oh by the way when I went to my LLMD initially, I did not know she was an LLMD. It was a total coincidence. I went to see her for my IC, which later on I found out it was due to Lyme as well. Anyhow the possibility of having Lyme was like as if I had bad vision all my life and all of a sudden someone put the glasses on for me that had the required/needed prescription to correct my vision. Everything looked different. Of course the fear took over every inch of my body. So 1 – Lyme took over my confidence that no matter what, things will turn out alright in life.

By the time I was diagnosed I knew how bad things were going to get, once I start my treatment. When I got the news the first thing that crossed my mind was “how am I going to break this bad news to my children, especially when their daddy was on the other end of the world Afghanistan?” 2 – Lyme took my ability in assuring my children that things will be alright after breaking bad news to them. 

During my pre-diagnosis, diagnosis and post-diagnosis (treatment) – during this whole journey I had many, many, many tears fall unexpectedly sometimes for valid reasons, sometimes over simple things, sometimes for no reason, which at times made me look like a crazy person to my spouse, my children, my friends and random passer byers (absolute strangers) 😉 So….3- Lyme took my ability to keep it together in public, in front of loved ones and even when I am by myself.

Once my treatment started I have experienced things I have never experienced in my life before. I found my self running back and forth in my living room screaming at the top of my lungs, because bugs were crawling under my skin. I woke up some mornings not having any idea where I am or who I am. I raged so hard that put fear in my children and I got to see that fear in their eyes. I felt all my body go numb, while still feeling tremendous amount of pain at the same time. All because Lyme is also neurological. I spent hours reading my eyes out, before adding just one more medication to my treatment plan, because new medication means more side effects, more herxheimer reaction, more pain. So many things that caused me and my family extremely high levels of anxiety. 4 – Lyme took this idea that I was this courageous person, because thanks to Lyme I’ve learned what fear really is.

I watched my kids get diagnosed. I had to face the fact they got sick because of me – they were infected during my pregnancy. I watched them experience the same levels of excruciating pain I have. I saw them get so sick that they miss school like 2 months and the depression followed it because of all the catch up work they had to do, while being sick. I felt guilty, because they had to go to school, even though they were feeling as bad as mommy. 5- and 6- Lyme took my ability to reassure my kids that we will get through this Lyme thing and my confidence to look forward to a bright future for my children and myself.

 Although I faced this issue less, comparing to many fellow Lymeys I am still familiar with the associated pain. Since Lyme is one of the invisible diseases it isn’t always easy for people to see what you are going through. The vision of human kind is blurred by their negative thoughts. When someone doesn’t believe you and trust your words as you describe what you are going through, s/he can think you are seeking for attention (even though logically that is ridiculous no one love being bed bound). I saw how painful it can get to hear loved ones say dismissive things about your disease and to not have them around when you need them the most. 7 – Lyme ripped away loved ones out of my life.

Facing Lyme Everyday – Financially

Before my diagnoses I had may symptoms that crippled my life, but never was I bedridden to a point I couldn’t take care of myself or my family. Starting treatment took me to that level. I was no longer able to work, clean my house, feed my children or even take a shower on my own. As devastating as this was emotionally, it was taking us down financially fast. I needed many tests that aren’t covered by my health insurance (yeah that topic again), I needed supplements that aren’t considered medication therefore wasn’t covered by my health insurance (these supplements were/are crucial to my treatment), I needed tools like a cane, a walker and a wheelchair (as I progressed for the worse), I could no longer work (there goes our two income life standard down the toilet), my kids needed similar tests and medications, I needed (and still do) assistance at home for cleaning and sometimes taking care of my children. All of this cost money. When you lose income that you rely on and end up with ton of unexpected expenses, life takes a whole different shape for you. I lost all my savings that we worked so hard building, built a mountain of debt and became dependent on friends and family financially. 8- and 9- Lyme took away my financial independence and it took away my financial stability.

So what did I gain as I lost all of these things?

I learned that:

1. Life isn’t always about forecasting your life and it is alright to live it in the current moment.
2. It is alright to show my children weaknesses, to cry in front of them and to let them know my fears. I am not a robot and they should know that.
3. It is not that important to keep up with appearances and I don’t care as much of what strangers think of me.
4. As much fear as Lyme instill in my life, it was alright to be scared of things and also allow others to reassure me for a change. I don’t always need to be that person that keeps it together no matter what.
5. I could fall apart in front of my children and pick back up and show my children that falling down is alright because when you are on the ground, you can always get back up.
6. Happiness is not like a see saw problems on one side happiness on the other side. You can have plenty of problems and still see the beauty of life, enjoy your other blessings and feel happy.
7. It is possible to value people more than their worth and it is a good thing to see those people for who they really are. I also welcomed many good people to my life, some are in close proximity and some are only close via the world wide web.
8. I need to get creative to get through the day and it is not a horrible thing to drop a few luxuries out of my life. Don’t get me wrong I am still living a good life comparing to many others, however there is a lot going on in the background to make things happen.
9. A boat that is rocking makes you change your priorities for sure. I might not have savings in my bank account and I might be struggling to pay my bills, but my life slowed down for a change and staying home I get to enjoy the most important thing in my life more than before – my children.

I see the little blessings in my life that was disguised by the challenges of my daily life. Being chronically ill shifts everything and things that seemed important before becomes less important and things that were neglected before takes precedence in your life. It is possible to suffer through all the tough times Lyme puts on your plate, while still not losing perspective on all the other things that are beautiful in your life.

Note to my fellow Lymeys,

You have Lyme disease (and many coinfections). You cannot change or remove this big fact out of your life. You will hurt emotionally and financially for many different reasons. You will hit rock bottom at times. It sucks. Life sucks with Lyme for sure. On the other side of all this suffering, it is in YOUR hands to keep focusing on all the good things Lyme helped you gain. Trust me you will see, if you look. Removing the negative thoughts will help your vision become more clear. Plus who wants to focus on negativity while going through excruciating pain. I would much rather focus on positives and feel happy. Happiness is in your hands not Lyme’s. Don’t let Lyme define your life!