How are you?
I have become resentful of this question. People who live with extreme chronic pain just don’t have a simple answer to this question.
I have a lot of bad nights, but last night was absolutely miserable. I took a pain pill before bed but woke up in the middle of the night with severe low back, neck and head pain. I took the maximum amount of all my pain meds (which is a lot!); that helped enough that I could get comfortable in bed but my head pain was still thru the roof and I had pulsing pain (sort of like an electrical current) running through my entire body. My feet, hands and lips were extremely numb – at some points, I couldn’t feel my fingers when I touched them together.
It’s one thing to share my pain on a blog where people have the choice to read it – or not. It’s another thing to look someone in the eye standing in the middle of an aisle in the grocery store and tell them how bad last night was and how much I am hurting right now. How do I tell them my pain is so bad that I just want to cry? Do they really want to hear about my misery? If I do tell them I’m not doing well, they want to know why treatment isn’t working better and when I will get well. It’s such a difficult thing to answer. Lyme is a complex disease and treatment is complicated and uncertain. I used to say “I’m doing ok”. Such a lie! And the response was usually something along the lines of “I’m so glad you’re better!” But I’m not better. I’m so not better!
Why am I writing about this? Well, I am hoping people who know a lymie will be able to find ways to interact that make everyone more comfortable. Here are some suggestions and things to think about:
- Try not to ask “how are you?” Just tell us you know we are in a lot of pain and that you’re happy to see us out and about.
- On the other hand – don’t ignore our sickness. You don’t have to make a big deal out of it…just let us know that you care.
- A Lymie out in public is on limited time. We don’t have much energy or stamina – being out of the house is a very large gift for the day. We cherish this time and we would love to have happy chit chat. So tell us about the good things that are going on in your life.
- I think we scare people, especially when we are in a wheelchair or riding the scooter shopping cart. It’s ok to acknowledge that we’re not walking. Just don’t look at us with pity. We already feel like an outcast. Just treat us like we’re normal people. Because we are!
- If you are truly interested in how we are doing, tell us! But know that it’s not gonna be a short conversation. Offer to come visit us. But only if you really want to know. If you’re not truly interested, then stick with the previous bullet points. That’s good enough for us! We are just happy to see you.
If you’re still reading this – thank you for taking the time to get all the way thru it. I know it can be boring to read about someone else’s trials. But it is an amazing feeling to know that you care.
In His Grip