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From Karen:
I have always been the type of person that didn't know how to "sit still", with a typical day for me being active for 16-18 hours of each day. Then Lyme came along and decided things would be a little different, and that 16-18 hours a day was all of a sudden spent in bed. I am pleased to say that is no longer the case and I am on the road to recovery.
Whilst I try very hard to maintain a positive outlook on life, one thing I will share about my journey with Lyme disease is: Living with Lyme is sometimes not living at all; rather can only be described as a day to day "existence". There were many days where the limited energy and muscle strength I had meant that it was a choice between having a meal or having a shower. This existence is made to seem all the more futile as the denial of Lyme disease means you cannot get medical treatment because you live in a country where the presence of Lyme disease is denied. My own experiences, and seeing and hearing of the suffering of hundreds of people is why for me, advocacy for Lyme disease and speaking up for those that are too sick to talk for themselves is a must.
In order to have an outlet for my frustrations at the lack of awareness and widespread suffering that surrounds Lyme, on any day I was able to get out of bed, I worked on research into the Australian situation on Lyme, and as my health began to improve, I extended the patient support/advocacy work I had been doing by starting a Lyme forum to provide support to patients and families living with Lyme. Through doing this, I was not only able to channel my anger and feelings of frustrations and helplessness at that lack of recognition of Lyme, I was also able to feel a contributing member of society by being able to give support and hope to other people struggling with the maze of Lyme treatment and denial. Helping to organise, as well as participate in awareness and protest events, both in the national and international arena will be a part of my life until the needless suffering of thousands of people stops.
For more on Karen's Lyme journey and awareness and advocacy work see her website: Lyme Australia Recognition & Awareness.
I have always been the type of person that didn't know how to "sit still", with a typical day for me being active for 16-18 hours of each day. Then Lyme came along and decided things would be a little different, and that 16-18 hours a day was all of a sudden spent in bed. I am pleased to say that is no longer the case and I am on the road to recovery.
Whilst I try very hard to maintain a positive outlook on life, one thing I will share about my journey with Lyme disease is: Living with Lyme is sometimes not living at all; rather can only be described as a day to day "existence". There were many days where the limited energy and muscle strength I had meant that it was a choice between having a meal or having a shower. This existence is made to seem all the more futile as the denial of Lyme disease means you cannot get medical treatment because you live in a country where the presence of Lyme disease is denied. My own experiences, and seeing and hearing of the suffering of hundreds of people is why for me, advocacy for Lyme disease and speaking up for those that are too sick to talk for themselves is a must.
In order to have an outlet for my frustrations at the lack of awareness and widespread suffering that surrounds Lyme, on any day I was able to get out of bed, I worked on research into the Australian situation on Lyme, and as my health began to improve, I extended the patient support/advocacy work I had been doing by starting a Lyme forum to provide support to patients and families living with Lyme. Through doing this, I was not only able to channel my anger and feelings of frustrations and helplessness at that lack of recognition of Lyme, I was also able to feel a contributing member of society by being able to give support and hope to other people struggling with the maze of Lyme treatment and denial. Helping to organise, as well as participate in awareness and protest events, both in the national and international arena will be a part of my life until the needless suffering of thousands of people stops.
For more on Karen's Lyme journey and awareness and advocacy work see her website: Lyme Australia Recognition & Awareness.
From Lisa:
Pre-Lyme I was a medical assistant and worked in home health care for many years with people who were disabled. I used to paint and play piano until I became too ill to do so anymore. I have had Lyme Disease for over twenty years now. It took over fifteen years to get diagnosed with Lyme Disease and once I did I didn’t know where to turn.
The difficulty in finding help, knowledgeable doctors and the right treatment led me to get involved in advocacy and activism. Helping Lyme patients find support is now a goal of mine. I met Karen through coordinating the Worldwide Lyme Protests, as she was the Australian Coordinator and I was the American coordinator. We wanted to continue the global efforts even after the protests ended so decided to embark on this next journey together and starting the Global Lyme and Invisible Illness Organisation.
For more on Lisa's Lyme journey and awareness and advocacy work see her website: What Is Lyme
Pre-Lyme I was a medical assistant and worked in home health care for many years with people who were disabled. I used to paint and play piano until I became too ill to do so anymore. I have had Lyme Disease for over twenty years now. It took over fifteen years to get diagnosed with Lyme Disease and once I did I didn’t know where to turn.
The difficulty in finding help, knowledgeable doctors and the right treatment led me to get involved in advocacy and activism. Helping Lyme patients find support is now a goal of mine. I met Karen through coordinating the Worldwide Lyme Protests, as she was the Australian Coordinator and I was the American coordinator. We wanted to continue the global efforts even after the protests ended so decided to embark on this next journey together and starting the Global Lyme and Invisible Illness Organisation.
For more on Lisa's Lyme journey and awareness and advocacy work see her website: What Is Lyme
