(you can read more about her at: www.huffingtonpost.com/lisa-copen/living-with-invisible-illness_b_937234.html)
Now I do walk with a cane, and depending on how my legs are doing on that particular day, sometimes I have to bring along Johnny Walker Red (my red walker and my Dad came up with that clever name!) so I DO have something to indicate that "ALL IS NOT WELL WITH ME"! But so many of my fellow Lyme friends do not have a cane or walker and go thru life in constant illness and pain, and people have no concept of what they are feeling. I don't like to complain, and after three years now of living with Lyme Disease and other co-infections, I only express my discomfort when the pain level reaches a "7" or higher. And at that point, I just don't care.
But all that to say, that today, just a mere 5 days before Christmas, I summoned up the energy to face the crowds and do a few errands. First the Dollar Store (GREAT deals on wrapping paper BTW!) and then CVS to pick up a few things, and then finally on to the grocery store. All the while, I am PUSHING and PUSHING to keep going. Sure I might look "okay" on the outside. But it doesn't reflect AT ALL what I'm feeling on the inside. On the inside, I'm thinking that my leg pain is getting really bad, but just to push through. And my brain is beginning to shut down like it does everytime I go shopping and get too overstimulated. This all started after I became sick with Lyme - trust me, I used to be a NORMAL person! I was SO normal in fact, that I was like the Energizer Bunny. I had SO much energy and was always GO GO GO. I loved to get out and be social, I loved shopping, I loved being active and hiking and always thinking about what exciting thing I was going to do next.
Now, I can spend weeks at a time barely able to get out of bed or off the couch and then invariably I will wake up and have a LITTLE bit more energy and that's when I know I need to take care of things until I crash again. Living with Lyme has certainly taught me to become very in tune with my body.
But today, running these errands, made me realize how different I was than all the other shoppers buzzing about, doing their last minute Christmas shopping. I had to PUSH and PUSH to keep going, and I had to keep refocusing my brain back to what I needed at the store, it's all so very hard but it's my life now.
People ask me all the time, "Are you feeling better yet/now/today? (pick a word) and actually when I think back to 2 years ago, when I was at my worst, I can say something positive, like "yes, I AM doing better than I was 2 years ago" and people say "That's great!" I always feel like people need to hear something positive. Am I really better? Yes, I can honestly say YES. But if you knew how sick I still was, the healing process has been agonizingly slow.
I'm still in treatment and taking a zillion pills a day, I have to watch my diet and avoid things that will increase my inflammation (I have enough pain to deal with) and take things to HELP my immune system. But anytime I start feeling down about my situation, I just think back to how much WORSE I was before. I have a long way to go, but I HAVE to believe that someday I will get my life back. It can't come soon enough.
Much love,
S.
