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Guest Post: Living With Lyme

November 07, 2016

This week, we asked Valerie Brock to write a guest blog entry chronicling her experience with Chronic Lyme Disease.  She writes regularly about living with Lyme on her own blog, lilacandlyme.com.  Lyme is still a difficult disease to diagnose and treat in many cases, and symptoms can be difficult to resolve and last for long periods of time.  Many Lyme Disease sufferers receive PICC lines during treatment, and we are committed to providing support to our customers with Lyme.  Read Valerie’s story to find out more about living with the disease:

Lyme disease is a Thief

Lyme disease affects every aspect of my life. The saying that "Lyme is a thief," is extremely accurate. At times you do not even realize what the disease has taken from you, because it is a gradual stealing away of simple abilities.

When I was first diagnosed with Late Stage Lyme Disease this past March, I had already lost all sense of normalcy in my life. The things that I once took for granted, like grocery shopping, cleaning house, cooking dinner for my family, going for a walk, reading a good book and even taking a shower, had become a struggle.

The truth is that I am too tired most days to accomplish much of anything. The kind of fatigue that you experience with Lyme disease is all-encompassing. It is a deep exhaustion that reaches all the way to your bones.

Like a heavy hand, it dictates every move I make, every word I speak. Even carrying on a short conversation leaves me drained and depleted of energy. I lead an extremely calculated existence.

The Constant Give and Take

For every decision I make to do something, I must give up something else in exchange. It is a constant process of give and take.

If I choose to cook dinner for my family, then I must go to bed early. If I read a bedtime story to my children, then I must give up an evening phone conversation with someone else.

If I choose to go to the grocery store in the morning, it means that I must spend my afternoon totally at rest. Going to church on Sunday, means I can count on being down all of Sunday afternoon and most of Monday. You get the picture.

Lyme is the dictator in my life. Some days my Lyme symptoms allow me to accomplish absolutely nothing. Other days, it is tolerable and I am able to trudge through the day finishing tasks here and there.

Lyme fatigue makes even the simplest of activities difficult. The constant work/rest cycle is exhausting in itself. My entire day is a series of stops and starts. Rest a little, and then live a little, this is Lyme disease.

Lyme Pain Varies from Moderate to Extremely Severe.

My joints and muscles feel constantly knotted and bruised. I would compare my Lyme pain to one of two extremes. Either I feel like I have just exercised for three hours non-stop or I feel like I have just been broadsided by an eighteen wheeler. Neither is desirable, but I would take the former over the latter if I had a choice.

Shaky legs and arms make tasks like writing out monthly bills and walking to the mailbox seem like extreme challenges. Joints that scream with aching, stabbing and shooting pain every time you move them, make you dread even getting out of bed.

Hands and fingers that swell the more you use them, can cause even simple chores like combing your hair seem mountainous.  The deep pain in my hips make sitting, standing and even lying down seem impossible.

Headaches that come to stay for weeks on end produce unending misery. Constant air hunger causes me to feel as if I am suffocating from the inside out. My list of pains and problems seems to go on and on. I currently suffer from over ninety symptoms, all of which are connected to my Lyme disease.

If you were to ask me to describe Lyme with just two words it would be, "Living hell." That is what living with Lyme is like. It is as if your worst nightmares have come to life. Your days become a battlefield. You just hope that you are fortunate enough not to end up a casualty.

Lyme Warriors

Lyme sufferers often refer to themselves as "Lyme Warriors." We are indeed warriors. We are fighters. Each and every minute of the day is a battle. A battle to survive the endless harangue of aches, pains, fevers, tremors, vision problems, digestive issues, constant fatigue and of course our inward struggle to maintain sanity through it all.

Many of us have been put through the proverbial, "medical mill." It took nearly nineteen years for me to reach the diagnosis of Chronic Late Stage Lyme Disease.

By the time I was diagnosed I had suffered irreversible heart and neurological damage. My heart has thickened from constant strain. I have a partial heart block.

My cognitive abilities are permanently impeded. My left foot drags slightly when I walk, remnants from the mini stroke I suffered from over ten years ago. Arthritis has taken up permanent residence in my hands, knees and feet making daily tasks painful. I am in my early forties. Yet, I feel like I am pushing eighty.

All of these things are signs of the battle that has been waged in my body for the past nineteen years.  This battle went largely unnoticed by the medical community. This is Lyme disease.

Lyme is Isolating

To have Lyme is to be an island unto yourself. It is a controversial disease. Receiving a Lyme disease diagnosis sets you apart from mainstream medicine.

Many doctors do not even believe it exists! This common, flawed medical opinion sets the patient apart from understanding and sound medical advice. The path to wellness is obscured by public opinion and lack of research.

This is why as Lyme patients; we must strive to bring into the light what the medical community refuses to see. Chronic Late Stage Lyme is real. It causes real and lasting damage. It is causing inordinate pain and suffering. It even kills.

Finally the field of Lyme disease needs much more research. Better medicines need to be developed to bring about a cure. Public awareness needs to be rallied bringing this horrible illness into the light. As a result, Lyme patients might also be able to live outside the bars of their silent prison, the prison of Chronic Invisible Illness and Late Stage Lyme Disease.

 Valerie Brock is a wife and mother suffering from Late Stage Lyme disease. She blogs about her life with Lyme and provides hope and encouragement for the journey at Lilacandlyme.com.  Please reach out if you'd like to share your own experiences on our forum or have topics you'd like to see discussed.  We are committed to helping people with chronic illness like Lyme through our products and community, and value your input.

 

 

 



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