Living with chronic Lyme disease

Life with Lyme

Lyme is a disease that affects the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, the skin…and the list goes on. 
Lyme patients may “look healthy”, but that in no way describes what they go through on a daily basis. I’ve been told, “you look great! I’m glad you’re feeling better!” – even though I never said I was. 
For better questions to ask, consider reading my mini series on caring well for the chronically ill {here} and {here}.

I know others mean well, but looking normal (sometimes with the help of a little makeup) is honestly the only “upside” to this disease. It is no reflection of what I, or others, are suffering through. So, in light of my recent diagnosis, I thought I would offer a better picture of how this disease, which we now know is Lyme and not MS, has affected my life.

I’ve chosen to share, not for those who read to pity me, but because…well, honestly, it’s because I think we all have a desire to be understood. So, even though it’s uncomfortable for me to share, I’m going to anyway. 

I figure the best chance for those who don’t have Lyme to begin to understand and have compassion for those who suffer with the disease (or any chronic illness for that matter), is to hear the stories of those of us who experience and live with the effects daily.

These symptoms be cray cray.

As I mentioned in my last post, I suffer over 60 different symptoms. Each day I experience anywhere from 20 to 30 of those symptoms, many of which are constant, including: severe fatigue, moderate to severe head pain and pressure, dizziness, joint pain, vision abnormalities, muscle spasms, numbness in my limbs, nausea most days, and leg stiffness/weakness…to name a few. 

I won’t share all of my symptoms, since there are so many, but they often come on fierce and all of a sudden (ex: chest pain, stabbing pains, heart palpitations, migratory pain, and more) – which can be both stressful and frightening.

Mornings and nights

These are usually the hardest points of the day for me. I’m at my weakest and often in the most pain. my mornings usually start out with me moving from bed to the couch and staying put for the first several hours. 

Afternoons are my best bet (but not guaranteed) to have slightly less pain and symptoms, but by the time evening rolls around I’m usually ready to lie down again. Sometimes I am able to push myself through a short outing on better days, but I typically pay for it in heightened pain & symptoms later on. 

The simplest tasks, like cooking, washing a few dishes, or a load of laundry often drain me of my energy. In all honesty, I spend many days on the couch or in bed.

What it's like to live with Lyme disease

Triggers.

I’m very sensitive to heat, stress, sugar, loud noises, bright lights, over-exertion (it doesn’t take much) and over-stimulation – which, since I’m an introvert means group settings fall into this category. 

Another “fun” trigger is sitting/standing up…I can almost guarantee my pain level going up at least a point just from the time I spend upright. 

Due to how drastic my health’s response to some of these can be, it’s often difficult to make it to things like the grocery store, church, the movie theater, restaurants, and parties. Or anything outdoor during the summer heat. My heart may want to, but I also can only tolerate so much pain and activity each day.

Making plans.

Fellow chronic illness sufferers will totally understand the struggle that goes into making plans in advance, which, for us, includes even the day before. 

It can be difficult explaining to people that we never know what to expect with our health. For example, I can be at my base of 5/10 on the pain scale when I wake up, but an hour later be at a 7 or 8 without any explanation. 

I can be moving around okay with my limp (again, thanks to the disease) for the first half of the day, but then need Trev’s help from one room to the next later on; hence, why a month ago we decided to buy a wheelchair for such instances. 

Due to these inconsistencies and more, I usually qualify with people when making plans that I/we may have to cancel last minute.

Driving.

My vision issues are what made us decide to have me stop driving altogether in February of this year (2014). We couldn’t bear the thought of something happening to someone else or myself. 

Between that, any pain meds I take, and now my persisting leg stiffness and weakness, we don’t foresee that changing any time soon. Not having the ability to drive myself places adds to the disconnect I can feel living with chronic illness, but I’m honestly not always up to going out for more than an errand or two anyway. 

A fact I use when trying to convince myself to accept the loss of driving a bit easier, but it does nothing for the stir-craziness. So if I really need a change of pace, Trev can help me head out to the front lawn for an hour under the shade tree or have a friend over for a visit and it’s refreshing for my spirit.

Marriage.

My Trev has been a rock through this. A friend of mine, who also battles Lyme, shared with me that her husband tells people “we’re sick” and there couldn’t be a truer statement of marriage in the midst of disease. Its affects both of us

I feel the physical weight, but Trev empathizes and carries an emotional weight as we fight this together. He also has most of the responsibility on his shoulders. 

He does all of the driving, grocery shopping, bill paying, income earning, picking up meals when I can’t cook (often), taking me to doctors appointments, picking up meds, comforting, caring and sometimes even carrying me. 

He needs support, too, and we are thankful for the close friends that have come around us in recent months. This is surely not what we envisioned for our first years of marriage, but we have fought hard for us and with God’s strength (and a lot of scrapes and bruises) we are growing stronger together.

This is really just a portion of how this disease has affected my health and our day-to-day life, but it shares at least some of the weight of Lyme disease. 

There are many other stories that are worse than my own, and I’ve indeed had much darker days than I’ve shared here. My hope in sharing this post is that greater compassion will be birthed in our hearts, for I’m surely not the only one you’ll come across who suffers a chronic illness. 

In my humble and exhausting experience, this disease doesn’t give it’s captives a choice of anything other than bravery.

Us Lymies may not look it, but our hearts and souls are, indeed, warriors.

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9 comments

  1. Samara says:

    This is so beautiful, Kami! I love how real and honest you are. I know you said that’s not why you wrote it, but my heart does go out to you!! I’ll be thinking of you, and praying for you !

  2. Brittany W says:

    I had to stop driving because of vision issues too. It was hard to give it up but it’s really in everyone’s best interest. 🙁 Funnily, afternoons are one of my worst times for symptoms. It’s so interesting how everyone is so differently affected even by similar illnesses! (I don’t have Lyme but my dysautonomia has a lot of the same symptoms.)

    • Kami says:

      I’m so sorry you had to give up driving too. You’re so right, though – it’s in everyone’s best interest. Ugh and afternoons are your hardest! It does seem to vary so much for everyone, between different illnesses and even the same. Thankful for the understanding we can all have for each other, but hate that others are struggling so much too. Sending you hugs, girl!

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