Lyme Disease is often called an invisible illness. For me, its the silent killer. A person with this disease will only allow you to see what they want you to see. I did this until it was absolutely impossible for me to do anymore. I would lie about how bad I actually felt because I didn’t want to worry them. I would get asked all the time how I was feeling and I sounded like a broken record, so I just started lying.
I have been so fortunate to get this amazing treatment by Dr. Jemsek. I have come SO far and will continue to recover. Lately I have been experiencing some symptoms again. Before, I actually thought I would die abruptly from a seizure or my heart giving out because my resting heart rate was 155. Now I am left with constant reminders of this disease with pain and various restrictions. I feel like it is killing me softly at this point. (Yes. I love the Fugees. lol) That’s the thing with this disease. There is no cure. There is only remission. As soon as I started seeing the all too familiar signs I was angry. I have not left that angry phase yet. I am so angry that this will be my new normal. I was very optimistic on how I would feel after treatment. I wasn’t expecting to be in this much pain and still be this restricted on tons of things.
About a year ago someone sent me and article explaining the ‘spoon theory’. Let me explain. Say you have 10 spoons to get you through the entire day. Every time you do something, you use a spoon. You wake up and walk to the bathroom…..that’s one spoon. You take a shower…..that’s THREE spoons. You walk to your car…….that’s one spoon. You park and walk into work…..two more spoons. You have now used up 7 of your 10 spoons for the day and you haven’t even started work yet. If you know someone dealing with an ‘invisible illness’ and see them out….please don’t make assumptions. Just know that those are the days they are fighting the hardest. Before I was diagnosed with Lyme, I didn’t know much about invisible illnesses. Now I know. I will do my best to educate others as best I can through this blog and my book. I am determined to spread as much awareness as I possibly can for Lyme Disease. Let’s all be more kind to each other and less judgmental of others.
I will be returning to see Dr. Jemsek in October and will know more on my treatment plan after that. I keep reminding myself that I have come so far and I am leaps and bounds past where I was. My body is still fighting and healing and I am so thankful for that. Even the most positive people are not positive all the time. That’s real talk. I’m learning that sometimes its okay to just not be okay. So, today I am angry.
To all my fellow spoonies/Lymies……..There is no rule book for this disease. Celebrate each victory no matter how big or small. They are all milestones. It’s okay to not be okay. We will all have a new normal at some point in our journeys. None of us are the same as we were before. We are stronger now. May be not physically yet, but mentally for sure. We will all continue to kick ass and make Lyme our bitch. -Lindsey