By: Rebecca Bressler
One of the things I've had to learn throughout this disease process is how to handle the toughest days. This disease takes and takes and takes and it's up to us to make good out of it and because of this I've changed a lot.
I used to be a very outgoing, crazy, musical theater girl and I loved it. I trained and ran marathons, I loved crew (rowing) and I loved traveling. I have become a much more introverted person now, I get nervous when I'm around people not knowing if I'll say the right thing or if I'll be awkward, I can no longer run or dance and my vocal chords are too tired to sing sometimes. My very identity has been taken from me. When it comes to socializing I know I can be a bit awkward. Add on top of it an obligation and a bad day, that makes for some tough moments. You want to experience life and all it has to offer but you know you are limited. So what comes next is how each one of us singularly accepts everything that needs to happen. We need to take care of our bodies and rest, we need to be present, we need to socialize? For me, sometimes, that is where the line is drawn.
When I'm having a painful day, I'm usually very quiet. A lot of people without chronic illness don't realize how much energy it takes to hold a conversation. Not only do I have to work all the muscles in my face and jaw to talk but I also have to think. My mind needs to be able to keep up with what you're saying. A lot of times that's just not going to happen. If I'm in so much pain it should be said that none of me feels well and my Lyme brain is in full force. It can't function normally and that's why I'm quiet.
But I understand that you want to help. Usually everybody starts asking you questions. Like what can I do for you, can I get you something, do you need water, what hurts, why does it hurt, so on and so forth. It means so much that you care to ask because so many don’t but sometimes there isn’t anything that can be done. A lot of times when you have chronic Lyme your system can become overstimulated causing sensory overload. When you’re in pain all your receptors are active, your nerves are firing off throughout your entire body and any sound, light, noise, smell can become intolerable and painful on it’s own.
The best thing I can suggest is to just be understanding.
If you know what I usually need when I’m like this than please feel free to grab it for me. Whether it be pain medication, some thc or cbd if it’s legal in your state, some essential oils and lemon water. But most importantly, don’t be judgmental. I’m really struggling to be a part of this and it might look like me lying down on the couch while you are all outside. It might mean missing out on fun family or friend events because the event would be too much on my system. It also might mean me sitting quietly next to you.
What I desperately hope my loved ones understand is that even though I'm quiet and fighting doesn't mean I don't want to be there and I'm not enjoying everything that is happening. I'm quiet so that I'll be able to have energy to smile, to hum, to eat, to take a picture with you, to hug you. I love you and I'm there because I want to be, but I'm also sick and I hope you can understand.