Living life with an autoimmune disease like Lyme Disease is not easy. It's not like the lives of others. You have your good days and your bad days. When I am feeling good it's great, but when I am feeling bad it's the worst. There are times when my body shuts down and tells me it's done. There are times when I feel like my body is giving up on me or failing me in some way. Those times are really rough times.
The hardest part is friendships, keeping them or even having them (that can go for romantic relationships as well, but that's another story.) I never know how I am going to feel from one day to the next. I make plans with someone, but by the time it comes around I may not feel up to it and it could end up being a day where my body says "nope, not gonna happen girly" and I have to cancel.
One day last week I had plans set to meet up with my cousin after work, but I ended up working late that day and had completely forgot about having made plans, needless to say she ended up finding me just as I had gotten in my car and was getting ready to leave the parking lot. She asks me "where are you going?" and I said to her "I don't know" she then says to me "I thought we had plans" and I was like "yeah we do" she asks then what I want to do and I end up having to tell her sorry, but I am exhausted, I worked later than I was supposed to, and I just don't feel up to it. I felt really bad, I had actually totally forgot about our plans, and then when she finds me I am too tired to go through with them. I was so gone by the end of the day that I almost got into a wreck pulling out of the parking lot after our conversation in front of someone I hadn't seen. Thank God it was just a close call and we didn't collide. I felt like a zombie that whole drive home. My body and mind were done for the day and it took all I had left to get home in one piece. My angels were really looking out for me that day.
Then there are my really good days, you know those days where I really feel like my old self again. I feel like I could take on the world, and I want someone to share it with. But in this day and age everyone has their lives so scheduled and completely booked that there is no room left for spontaneity anymore. So if I call someone and say "hey I am feeling great, lets go do something fun" the response I get is "oh I have plans, I have my kids, I have this or that going on, I can't" whatever the reason. So I go out and spend my best days on my own or with my dog.
With that being said it can be lonely sometimes, it can feel really isolating. I feel isolated by my symptoms and my friends, and they can feel alienated by me when I am not feeling my best. Many of them remember my "old self" and have a hard time seeing me now. Even though I look the same, I am not who I once was. And that's ok. We are meant to grow, evolve, and change. Change is inevitable. Mine is just different than others.
There will be more posts about living with Lyme Disease, stay tuned.
Can anyone out there relate? Please share if you do. How has it been for you?