Life With Lyme Disease: Living Moment to Moment


Today is exhausting, painful, stressful and overwhelming.

Today is also filled with moments of laughter, happiness and love, rest and pleasure.

Today is a wide array of emotional feelings that are just a sample of my life.

Today is a sample of how the pendulum of my life swings back and forth from happiness to anger, to relaxation, anxiety, stress and pain.

Today, like many other days, started off low-key and I can’t even really say that one particular thing happened to lead to my stress and exhaustion. Those feelings are just automatically there. It is silly sometimes, the strangest or smallest things that make me feel stress. Actually it has become so stressful just to ponder the reasons I feel stressed, painful or exhausted.

I have Lyme disease, fibromyalgia as well as hypermobile Ehlers-Danlos syndrome (hEDS).

How I am feeling physically and mentally at one given moment may not be true five, 10 or 30 minutes later. That is one of the frustrations with Lyme disease, I never know when I will no longer be feeling OK or able to do something, it changes at random. Sometimes all I want to done is be able to explain how I feel and have another person “get it.” Have them understand and see that I don’t ever really know if I am having a good day. I don’t know if there are even such a thing as good days, perhaps good moments. Life with Lyme disease is a moment to moment thing. It is a life that cannot be planned, as I never truly know what the next moment is bringing.

I don’t share how I am or what I feel for the most part. How do I explain the incongruous fatigue that can overwhelm me and make me feel a though I am made of lead? I feel the frustration of having my eyes fatigue and not work properly, to live with everything I try to look at as blurry and out of focus…Of sudden pain that is stabbing, aching, burning or spasming, that randomly occur anywhere in my body. The pain swoops in like a phantom and can be unrelenting and present, or can just as easily leave just as suddenly as it hit. The pain can stop me in my tracks, stop me mid-breath or mid-sentence when it hits me.

Once I am past the shock of the initial feeling of pain, I then move on, pretending the pauses did not happen, that I can move on as though nothing happened. Although something has happened, and I need now to carry on holding in that it hurts, that I feel done and ready to lay down, that I have no more to give in this moment. At that moment I feel like all I can or want to do is lay down and close my eyes and be done…Except I can’t because I may still have work to complete, kids to pick up, shopping for food to do, dinner needs to be fixed tonight, and the kitchen cleaned after, animals need to be fed, litter boxes and cages need to be cleaned. Lets not even think about how much the house needs a good clean. Those are moments in my day that also exist and do not have a care that the moments of pain, exhaustion and stress are present.

Letting go has become a necessity in my life in order to pace and survive this disease. I have had to learn to let go. As I choose what to let go, a tear drops from my eyes as I think of how much I have had or need to let go. It’s not just the ability to overdo it on a project, throwing myself in knowing I might be a little extra sore the next day. With Lyme disease, throwing myself into such an activity may mean I can’t get off the couch the next day and maybe even the day after that. I have to pace myself in everything I do. Plot out what I have to get done and if I think I will have enough energy to tackle anything extra. Just a small amount of pulling weeds and planting new plants in my garden space steals countless amounts of energy from me. Energy that I might very well be borrowing from the next day.

So what else have I let go of? People, clients, money, independence, activities, spontaneity…And so on. I work less so I make less, I plan less outings and events, I see less friends and family. I never know when I will have nothing to give and have to beg out of an event, so sometimes I feel like why even plan to go. This level of pain, exhaustion, anxiety, etc., stops me in my tracks at times.

But the other part of me is fighting. Fighting to get better and do all the things I need to do to make that happen. Fighting to not be a slave to Lyme disease and all that it is doing to my body. To not allow my life to be ruled by my limitations. Instead I pace myself and make choices to help keep stress low and live. Live as full of a life as I can each moment, and each day. Knowing that many days will be a mix just like today of exhaustion, pain and stress but also of happiness, laughter and love.

Follow this journey on Healing Serenity.

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Thinkstock Image By: Julia_Sudnitskaya

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