A Day in My Life With Chronic Lyme Disease and Chronic Pain
I am writing this to bring a little perspective to what it is like to live with Lyme disease and chronic pain. I long to bring to light what it means to face the daunting task of daily living with this chronic illness.
I am not seeking pity, just understanding. For every person, each new day brings with it a new set of challenges, whether or not you have a chronic illness. But every day is unpredictable when you live with chronic Lyme disease and fibromyalgia, as I am sure is the case with any other chronic illnesses. If you have a chronic illness, I applaud you. I admire you. I understand! I am so sorry. You are not alone.
For me, Lyme disease is a mixed bag. Some days are fairly good, which, in the case of Lyme, usually means they are uneventful, though never easy. The norm being just the regular aches, pains and fatigue that go along with this disease. Bad days are just that, unspeakably bad.
Most of the time, I feel like someone who is twice my age. I feel like I live in the body of an 83-year-old. Upon waking up every morning, I do a quick assessment of how I feel. Usually, before I even open my eyes, I can tell if it will be a “good day” or “bad day.” Today, I knew right away… “bad day.” The kind of day that makes you want to roll over and pull the covers over your head. But I have a young family and do not have that option. “Good morning, Lyme,” I say. Just like a storm-tossed ocean, I feel the day’s battle roiling beneath the surface.
Today, every joint in my body throbbed. This is normal for me, but today the pain was much more intense than what it is on “good days.” It felt like I had just spent a week participating in the most intense basic training operation you can imagine. My elbows were screaming as if they were broken and bruised. My knees felt tight and puffy. My fingers aching so deeply (like a toothache that never ends) that it felt like they may not be movable.
The permanent knots from arthritis on my finger joints were swollen and red. I flex them slowly. It feels a bit like a creaky door that needs a good dose of oil on the hinges. Like a balloon that has been blown up too tightly. My shoulders were shouting for relief. My neck tight and unforgiving, as if I had carried the weight of the world on my shoulders for at least a few thousand miles.
My lower back felt fragile and ached so deeply that it radiated over to my hips and groin, even down the backs of my legs. My upper back throbbed relentlessly, as if I had carried 100-pound bags of bricks all night long. My ankles creaky, stiff and sore as if I have been running for many miles.
I felt the pressure of air hunger building in my chest and throat. The feeling that I cannot get a good, deep, cleansing breath no matter how hard I try. Air hunger is by far one of the worst symptoms I suffer from. It is a terrifying feeling and one I have found I cannot escape. When it shows up, I just have to hang on for the ride. It feels a bit like suffocation from the inside out. Like I have the proverbial elephant I mentioned earlier sitting on my chest. When my air hunger flares, I cannot talk on the telephone, carry on a conversation or read aloud to my children. My doctor thinks this problem stems from a co-infection known as Babesia. It is commonly transmitted along with Lyme and other co-infections and is hard to treat.
The laundry list of aches and pains just got longer. Oh, my pounding head. My thoughts so jumbled I couldn’t think clearly. “What was it I was supposed to do today?” I’m sure there was something important… yet, I cannot remember.
Why, oh why does it feel like I swallowed a bag of rocks? My gut is wrenching from spasms. So much for enjoying food today. Hello to early onset indigestion before I even eat one bite of breakfast. On and on and on the morning assessment continued.
I felt that old, familiar enemy, fatigue, pressing on me. Even though I had slept for five solid hours prior, I felt as if I hadn’t slept a wink. Fatigue was there, pushing like a heavy, iron hand that insisted I stay rooted to the spot where I had slept. This invisible “hand” is powerful. It can make or break my days with its absence or presence, whatever the case may be. (Although I can count on one hand how many times it has been somewhat absent this year, it is always there lurking beneath the surface of my life.)
Today, it was strong. It took a long while for me to partially break free of its grip a bit. Finally, with much struggle on my part, I was able to sit up on the edge of my bed and attempt to begin the day. Just walking to the bathroom this morning was a struggle.
In a matter of minutes, I realized what I was up against. The day loomed ahead of me, one long struggle. I straggled to the bathroom and then back to the edge of the bed. I sat there until I had enough strength to gingerly walk down the stairs to the kitchen to take my morning cocktails. This mainly consists of tinctures and herbal supplements and, of course, the tried and true prescriptions for my cause.
Then, it is another 30-minute wait to eat while I wait on my meds to “kick in.”
All this before breakfast. No one really knows what I have felt. No one knows what I have thought. It’s just there, a part of my everyday life. A quick shot in the viewfinder of my existence. I choose not to talk about it most days. Not to discuss it. There is no need to. It is just a constant reality.
Each morning is similar to this one. The struggle is real. This is the wake-up call I deal with every day. This is chronic Lyme disease. I have accepted the battle. I refuse to be defined by it.
After eating breakfast, I begin to assess what has to be done today. Things that I have no choice but to do. Things like writing bills, scheduling appointments, attending appointments, planning meals for my family, etc.
Halfway through the 30-minute wait until breakfast, my heart decides to take off at racehorse speed. I creep up the steps to the bedroom and take my blood pressure and pulse rate. Too high and way too fast. Yet another problem to include on my growing list.
Before the morning is up, I will also include vertigo and costochondritis pain (an inflammation of the cartilage that connects a rib to the breastbone that causes chest pain, etc.) to my list of troubles. Again, this is normal for me.
I have found it very useful to compare my energy levels to Christine Miserandino’s Spoon Theory. Basically you start out the day with a set number of “spoons.” You use up a spoon for each activity you engage in. Get up out of bed, I’ve used a spoon. Get dressed, another spoon. By the time I have finished breakfast each day, I have used up over half the spoons I have available for any given day.
Once in a while, I can push myself and borrow from tomorrow’s spoons, but that puts me at a disadvantage the next day. Some activities take more than one spoon. For example, cooking a meal of any kind takes at least three of my spoons. Some days, I use all of that day’s spoons and most of the next day’s allotment. Then, I can count on a visit from a huge flare-up of Lyme symptoms. It is exhausting and limiting.
I lead a very calculated existence, as my illness controls each and every decision I make. If I want to read aloud to my children, then I must give up something else in exchange. If I want to go to the grocery store in the morning, I must spend the afternoon totally at rest. If I want to go to church on Sunday morning, I can count on being down all of Sunday afternoon and most of Monday. You get the picture.
For most people, when the word “rest” is mentioned, they picture reclining in a comfy chair or on a couch or bed, cozied up with a good book, etc. In my case, however, even reading a book is often too strenuous for me. Just the simple act of holding up a book is too hard on my arms. My fatigue is so great, I often do not even have the energy to enjoy that simple pleasure. To hold up a book is to feel like I am holding a 50-weight. I miss reading for pleasure so much! Maybe I’ll invent a book prop or something, but then I would still have to turn the pages. I digress.
I have come to understand that life is what it is. The things I cannot change, I try to accept. I love keeping a positive attitude. It helps to look for the silver lining in all situations. No matter how long it takes to see it, there is always a rainbow somewhere!
I am just grateful to have the chance to be here. The chance to make everyday decisions. The chance to live, no matter how limited. Some are not given even half of what I have. I am thankful. Life is a gift. I want to treasure the one I have been given.
The rest of my day goes very similar to the morning. Do an activity, like load dishes into the dishwasher. By necessity, stop and rest. My whole day is a series of many stops and starts.
By the time the supper hour rolls around, I am done for. I eek out whatever simple supper I can come up with and totally crash afterwards. At bedtime, I rally whatever spoons I have left, which is usually none, or I borrow one from tomorrow’s spoon jar and carry on with the nightly routine. Baths for the kids, teeth brushing, tucking in, and once in a while, a story.
If it is a good day, I get a shower. If it is a bad day, I take put a soapy washcloth over my face, etc., and skip the shower altogether. Crawl into bed and sigh with huge relief. The day is done.
Now, if only I could sleep. It is a vicious cycle. No matter how exhausted I am, sleep usually eludes me until the wee hours of the morning. Too tired to do anything, yet unable to sleep. What’s a girl to do? I try to count my blessings.
If you know someone who has a chronic illness, give them your understanding and love. Pity is never useful. Friendship is always needful. If you have a chronic illness, I am so sorry for all that you face. May you always find the silver lining. May you always see the rainbow, even in the darkest storms, hiding behind the clouds.
Follow this journey on Lilac And Lyme.
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