Lyme Disease Awareness Month!

May 08, 2014

May is Lyme Disease Awareness month so I am dedicating this post to my experience with Chronic Lyme and the impact it had, and still has, on my art.  I want to share my story, not only of my struggle with the Lyme, but my struggle with my life after Lyme. There is plenty of information out there on the symptoms of the disease. But what happens after Lyme?  Most people never get better.  Eventually you learn how to cope with Lyme and create a new life for yourself.

So, a brief history of my Lyme: I started having anxiety and chronic fatigue in 2005.  Nothing severe enough to cause much alarm.  In 2009 I had a very stressful year and I believe the stress weakened my immune system enough for the lyme to really take over.  As the year got more stressful I began to notice something was really wrong.  I couldn’t comprehend what I was reading or stay focused and organized. I had no energy and my right knee and elbow started hurting.

By Jan of 2010 I was having such bad anxiety I couldn’t eat or sleep and finally was so sick I had to go to urgent care. The doctors had no idea what was wrong with me and sent me home. Luckily I was seeing an amazing naturopath at the time, we spent about a month testing me for all sorts of things.  When every test came back negative, she suggested I get tested for Lyme.  Sure enough I tested positive.

I was very fortunate to have been diagnoses correctly so early on. A lot of people who have Lyme go untreated for years. Like me, they never realized they got bit by a tick. Because Lyme mimics so many other diseases it can be really hard to diagnose and tests can sometimes result in false positive or false negatives.

In March I started my 10 month treatment of antibiotics, but by the end of April I was so sick I could no longer get out of bed. The medicine that was supposed to cure me was wreaking havoc on my body.

I spent the next 8 months my life in bed. I had to give up every aspect of my life and focus on healing. Most days I struggled just to get out of bed and go to the bathroom. Gravity was my enemy. I was lucky if I could make it to the couch in my back yard studio. I would lay there looking at my art wondering how I ever had the energy to hold a paintbrush. How would I ever be well enough to paint again?

Cat Nap

Cat Nap

By October of 2010 I started to see a little improvement and by January of 2011 I was finally able to get off the antibiotics. I realized my road to recovery was only just beginning. Not only did my body have to recover, I had to start getting my life back together.  I had to get back to the “old me”.

Here I am 4 years later, I still have symptoms and like most people who have chronic Lyme, I don’t know if I will ever fully recover. I finally realize I will never get back to the “old me”.  I have learned to cope with Lyme and balance my life so I can stay as healthy as possible.  But it isn’t easy.  Compared to how I felt two and three years ago I feel great, but my body still aches and I am always tired.

Sleep, sweet sleep. Being tired is the base line of my existence, then there are the times when I am exhausted.  And not just regular exhausted, painfully exhausted.  My body aches with a buzzing pulsation, I can’t think, I feel like I am going to vomit. Living with Lyme is living with a limited  daily supply of energy and there is no borrowing from tomorrow’s supply.  When you are out of energy, you are out.

Being tired and in pain all the time makes it hard to go out and participate in life.  I have really slowed my pace of life down, and I have to continue to work at keeping it that way.  It is too easy to fill my week up with errands and socializing and then not have enough energy to paint.  I also had to make changes to my studio practice and to the direction I want my art career to go to accommodate my health.

Having a couch in my studio is a must,   having my studio in my house is preferable.  It makes my life a lot easier when I can multi task throughout my day by getting household chores done or taking a quick nap while I wait for paint to dry.  I find myself saying no more often now, not just passing up socializing but also turning down art opportunities.   While I used to enjoy painting murals, I know I can’t work at the pace and scale needed to complete a mural. I paint at a much slower pace now, so I have less work available  to show.

The benefit is that  I have more time to contemplate my work.  If I am too tired to paint, I can still sit in my studio space and look at the art, deciding what my next move will be. I find I am much happier with my finished work more often now. I also find that I am much happier with my life now. I don’t have the energy to sweat the small stuff and my life is filled with amazing people who support and love me.

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2 Responses to “Lyme Disease Awareness Month!”

  1. I am following your blog which I just located looking for Flashe paint properties. Like your work and you by your words. Now interested in your Lymes because I too have been having pain and fatigues for years/ undiagnosed. My
    website is outdated

    • kelly neidig says:

      Hi Ethelyn,
      Sorry I didn’t respond to your comment earlier. Most of the comments I get are spam! Please email me if you have any questions about flash paint or lyme disease.