A Day in the Lyme Light: A look at living with chronic Lyme disease | Living Grace Blog

A Day in the Lyme Light

May is Lyme Disease Awareness month and today I am sharing a look into a day of living with chronic Lyme. This can vary greatly from day to day and from one Lyme patient to the next, but it help gives context to the response of “what do you do all day?”

This moment as I lay in bed scrolling through the emails of the morning, I may look like any other 29 year old starting their day.

But Lyme has made it clear that these are not ordinary days. There is no healthy normal, no magic “feel better” day right now for me. There haven’t been for years.

I’m lying here, giving my body the space it needs to prepare for my next routine of the morning: migrating to the couch.

My right big toe nail feels like it’s on fire today. I gently rub it against the sheet as if that’ll put the “fire” out. My joints ache and my ears are ringing with a high pitch tone that only dogs should be able to hear.

The muscles in my legs tense and spasm as if I’m flexing them even though I’m doing nothing to make it so. My head feels as if it’s been used as a bowling ball all night and so I continue to lie here.

I breathe deep breaths and remind myself I don’t have to move until my body is ready.

This is not a “bad” day for me. This is my norm. I’ve learned to deal with it, knowing I’m working hard at killing these bugs off. Trusting, believing, hoping and declaring that this is not, cannot be the end of my story.

I’m coping with tears, but it’s not because I’m sad this morning. These aren’t tears of defeat, these are the tears from battle. From fighting for your life.

Lyme has drastically transformed my little corner of the world. The effects of this illness, in combination with the host of other infections, my genetic makeup, mold illness, and mercury toxicity, have led to a debilitating life.

A life that looks so different than the one I dreamed of in childhood, high school, or even college.

I’ll be thirty this year. Thirty. But as I struggle through my days, my ability aligns more with someone much older and a whole lot more frail.

Chronic Lyme disease can drastically change the way you’re able to function. And this is just a glimpse into the day-to-day life of those living with chronic illness.

The day-to-day of chronic illness: my response to the question, "What do you do all day?"

After an hour or two of my “waking up” routine of resting and waiting to acclimate, I finally sit up. If I’m stable enough, I’ll stand and move out to the living room.

Today I’m just going to sit for awhile on the edge of the bed, waiting. For the room to feel more stable. For my feet to be more secure. For my body to be more ready to start this day.

After finally making it to the couch I am already exhausted. This level of fatigue goes beyond whatever idea I used to have of it meaning “tired.” It’s so much more than that. This is a mixture of sick, tired, overworked, and no shut-eye for days, all rolled into one. And no amount of sleep or rest remedies it.

The morning things need to be done and so I pick up one heavy foot after another and work my way into the kitchen to prepare breakfast. Which includes a delicious dose of what I’ll thinly veil as “supplement sprinkles.” (They’re all-natural pills, okay? I was trying to be cute).

After gathering my start of the day supplies and feeding the pup, I’m off to the couch for a dose of quiet or Netflix as I rest and munch. My brain is too foggy and full of pressure to write, or talk or human right now so I’ll be here til my next nutritional recharge, thank you.

It’s taken me time to accept that resting is a key component to my treatment. My body demands it or else it will protest. And not peacefully, mind you.

It will tantrum, shoot pain levels up and cripple me with dizziness and muscle weakness until I’m forced to listen. Until I respond with quiet and rest. It will leave me with no option if I don’t give it what it needs now.

Today it requires a lot of rest. I didn’t listen as well yesterday. I did a load of laundry (no folding), loaded the dishwasher and made dinner. Though those may sound simple to you, that was my Everest. And I’m paying for it.

So I’ll focus on REST today.

A day in the life of chronic illness: Why I spend my days at home, resting. | Living Grace Blog

I’ll stay close to the couch, texting and messaging friends, both sick and well. Passing the time in between cooking shows, documentaries and Jane the Virgin. I’ll write if my brain allows, read if I can focus long enough or color if my hands can handle it.

But mostly, I’m trying to listen to my body and be still. I’m trying to heal. Before dinner I’ll get in the sauna or do one of my other forms of detox therapies, but those may be the biggest tasks of my day.

I used to be embarrassed when asked what I do all day at home, but now I try to shake it off and just be real. I’m not lazy or unmotivated, I AM SICK. I am fighting for wellness. These are the facts of my reality.

I am doing the very best I can, which sometimes means saying no to an outing or phone call. It may mean missing out on an important event or gathering, but that could also make the difference in my pain level and ability to function for the days following.

This taste of a day in the Lyme light is a window into the struggle of illness, but it is only one piece of me. Of any illness fighter.

In the hours and moments I am able, I find ways to give back. I write, I encourage, I share authentically about this fight with disease. I love those around me. I smile and laugh and joke like anyone else.

I am a tiny person, but I am a warrior with a brave heart. I am a vessel to be filled with purpose, grace, kindness and compassion. And I aim to share them with others.

I may be debilitated most days from this illness, but it’s not the end of my story. I am more than these limitations. I am more than the fears that can hold me back. I am more than Lyme.

So what do I do all day?

I’m a survivor, a fighter, an illness warrior. So I do what we do best:

I survive.

 

As I continue to fight this disease, treatment costs continue to pile up (as they do for all Lyme patients. Insurance usually covers nothing to very little of the expenses of treating chronic Lyme). My husband and I have begun fundraising for the next stages of treatment. If you are able and wish to give you can visit my fundraiser page here.

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18 comments

  1. Liz says:

    This is so amazingly encouraging and inspiring! I’m 24 and have systemic exertion intolerance disorder (I plan to get tested for Lyme this year, though, since the symptoms are so similar).

    • Kami says:

      Aww, thank you, Liz! I’m so sorry for your own daily struggles you face. Sending you hugs!! That’s interesting your symptoms are so similar. Lyme seems to commonly overlap or be misdiagnosed – I was originally diagnosed with multiple sclerosis before Lyme.

    • Jen says:

      Please understand lyme tests are up to 80 percent false negatives. You can not rely on a lyme test. Mainstream medicine will deny you have lyme.

  2. mom & dad says:

    Praying for strength and health. You are amazing and strong in faith. Beautiful inside and out. And, we are your cheerleaders!!! You go Kamigirl!!! We love You and Trevin. Xo

  3. Mary says:

    How did you get diagnosed ? What type of doctor? The ringing in my ears is driving me insane. I can’t even begin to describe the fatigue. My joints are so inflamed & my body is wracked with pain. No one is listening to me.

    • Kami says:

      Hi Mary. I’m so sorry you are struggling so much. Hearing your symptoms, my heart aches for you, knowing how awful it is to live with everything you described. It’s in your best interest to find a Lyme Literate doctor who will order proper testing through ILADS or be able to give you a clinical diagnosis. I have other resources I’d be happy to share with you via email as you search for the answer to your illness – someone will listen. I know it’s exhausting and traumatic to have doctors repeatedly turn you away or tell you you’re fine when you’re not, but there are specialists who understand. Feel free to email me to chat more! Praying for you. kami@livinggraveblog.com

  4. Lisa-Michelle says:

    You are the carer of an unwell person, and it sounds like you are doing the very best you can… and pushing for just that bit more.

    I like how you say about connecting with friends and sharing encouragement…..I do that when I’m well enough to think but lying down is safer for my bod. Its really helped me not go crazy…actually, it’s helped me get better from being crazy….the mind has something to do and so it doesn’t attack itself
    Good luck on your journey to increased Wellness. May your pillows be fluffy and your sleep sound xx

    • Kami says:

      Thank you so much for sharing these words and encouragement, Lisa-Michelle…I’m very grateful for the kindness. May you feel comforted today, reminded you are not alone. Sending you such love!!

  5. Kasey Passen says:

    You write so beautifully and I feel the bravery and strength in every word you share with the world. I understand everything you are saying because I am going through treatment of chronic lyme and have been on this journey for a few years. Tonight I was looking through blogs to decide if I want to start one of my own. I feel I need to do something with all of the wisdom I am learning and somehow share my struggles as well. So that my voice is heard and someone can be touched by me. Your words touched me and you might be the inspiration I need to start writing my own blog.

    • Kami says:

      Hi Kasey. I am so touched to read your comment. I know that it was the writing of others that first inspired me to start this blogging journey and I’m so grateful to be able to pass that inspiration onto someone else. Writing can be so therapeutic for both the writer and the reader. I hope you embark on this journey! There is such beauty in sharing your story and I have no doubt there is someone who needs to hear yours. Sending you much love and a gentle hug, fellow Lymie. Feel free to email me if you need to chat! kami@livinggraceblog.com

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