Lyme Life ~Monday Planning

If you are like most people, you may have indulged in a bit of frivolity last month. The scale may need some adjusting. Maybe you have an unruly wardrobe. Or maybe nothing changed externally, but you can feel the lasting remnants of eating and drinking in a less than ideal way.

For Lymies, Lyme Disease and various co-infections make us sensitive to all kinds of subtle changes that might not bother other people. The sweets and treats that accompany gatherings of friends and family usually leave us feeling inflamed, if not just a little bulkier.

My husband coined the phrase ‘how’s your pain index’ years ago, long before we knew it was Lyme Disease. I was told chronic fatigue syndrome was the culprit. The arthritic pain, headaches, debilitating fatigue was chalked up to fibromyalgia. I seldom let the pain stop me, although it definitely slowed me down at times. Usually, over the counter pain relievers took the edge off enough to get things done.

Of course, if I were not very careful, the pain showed through on my face. “Why are you angry?” was a common question. I wasn’t. But I was often depressed. Being in constant pain is difficult. Lyme Disease and other tick-borne diseases cause no end of trouble. It takes tremendous effort to live life and not just exist.

In the movie, Secondhand Lions, one line stayed with me. “They really lived?” says the boy. “They really lived,” replied the lead. It was a dramatic moment that you cannot hear reading it, but the point was that strong emphasis was placed on the reply. With a slight turn of his head and lowering of tone, the point was clearly that they lived to the full.

I have been sick for as long as I can remember. Pain is no stranger to me. In spite of that, I have had some great adventures. Trying new things, even a new recipe can become an adventure with the right attitude. Art-of all kinds, building or repair projects, even rearranging a closet can be fun.

I don’t think it takes money or travel to have a good time. I do think it requires a mindset. This is our one life. Let’s live.

My friend asked me how I was feeling last week by email. The tears streamed down my face as I read it. I didn’t want to answer at all. I didn’t want to say the truth and put my mindset in that state of reality, but I didn’t want to lie. It’s not that I stay delusional. I prefer to do what I can, while I can, with what I have and not complain about how I feel doing it. I just don’t talk about the pain, fatigue, stiffness, vision problems, and the rest.

To renew, I take care of myself. I want to have the energy to refuse to behave the way my body leads.

So, I plan.

I plan rest, both physical and mental.

It may be a bath or a quiet time in the woods.

I plan positive mental stimulation.

Reading, writing, games, and conversations all help.

I plan physical activity.

I seldom go out but if I do, that counts, housework, walking the dog, dance or exercise, anything that makes me move has to happen.

I plan meals.

Thinking ahead is essential. From shopping to preparation to portions, we must manage the things we put in our bodies.

I plan for the unexpected.

Traffic, crowded lines at the store, broken or lost stuff all happen to everyone. If we plan for it, it doesn’t upset us as much and we can keep a positive attitude.

I plan to hope.

In order to live, we must hope. Looking forward to a conversation with a friend or a certain meal or visits with family or sharing someone’s good fortune or some other good outcome might be as much as I can hope for some days.


What do you plan for?

Maybe you have plans to take a cruise, other travel or hiking and camping along some huge mountain range. Perhaps you plan to write a book. Could it be that you are putting together a wedding or anniversary party of some kind? Maybe you plan for a movie this weekend. I’d love to know what keeps hope alive for you so you can live.

Renew hope on a regular basis to renew yourself.

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