 | An extremely poignant and well written description of the struggles of living with Lyme - thank you Emma (Written December 2013) |
"Memoirs from a year of knowing my devil – dancing with Lyme Disease" by Emma T
It’s hard to capture the immensity of Lyme Disease in just a handful of paragraphs. But I will start with resting, because resting is what I do most. Resting has taken on a new meaning. It is no longer that fun experience of snoozing on the sofa, watching day time TV whilst chatting on the phone to a much loved friend about the wild weekend you had, or a lazy day lounging in the sun with a book. It is now solitary confinement with in my skin. A battle to do as little as possible in the hope of getting some relief from the bone-shattering fatigue, discomfort and cognitive dysfunction that has become my daily life. There is no relief, but resting stops it getting worse and will sometimes allow me to bank some enough precious energy for a special occasion so that engaging with life for a fleeting few hours is possible.
My body aches in so many ways and I can't cope with being on my feet too long. I am too exhausted to do anything useful and my brain is barely able to recall words never mind put them together in a sentence. People say ‘make good use of this time you have off work’ – I wish they could step inside my prison for just a moment to understand that this is no holiday. There is no making good use of this time, sometimes just being inside my body is the hardest and most gruelling thing I have had to do. Reading is out, it requires a memory and that disappeared long ago. Hobbies are an impossibility. As is loud music, bright lights and TV (although that's out for many reasons). Everything (most things) I love - loved, is no longer fun because the effort and consequence cancel out the enjoyment…and then there is the pain too. Did I mention frustration?
There are fleeting moments of ecstatic gratitude and love…but these moments are like the gasp of breath when you surface from the depths of water, before plunging under the surface again. Remaining in a place of gratitude and love is exhausting in itself, like treading water until you can barely hold yourself above the surface, it too takes effort and sometimes to simply feel nothingness is a relief.
I sometimes dread having to go into town in case I can't get a parking space near to where I have to go. Even making breakfast is a challenge, standing up AND making decisions; I leave an empty pan on a lit hob and walk away, forgetting. My career is on PAUSE, to be resumed. I can't function and the wonderful opportunity I have had to do what I love has turned into a painful realisation that I am too sick to look after myself never mind work. My love of study and research is gathering dust, awaiting the day when my brain can recall what I read just a moment ago.
Engaging with my beautiful friends has become a heavily planned (usually non-) event; will I have enough energy to drive, will there be a chair that I can rest my head, will I be able to keep warm? As the debilitating fatigue creeps in my cognitive function declines, the inability to make any sense when speaking takes its toll emotionally. Sometimes I hear myself and the words and sentiments are not even mine, and I wonder who just said that - that surely wasn't me. Is the bacteria eating their way through my neural networks rewiring me into someone I am not.
There are no fun plans to be made, not even for tomorrow, for tomorrow may bring a darkened room and pain. How could people understand that sometimes a simple phone call seems like an impossible task on so many levels, even if I was able to laugh and play earlier in the day. I have often phoned my husband and before we connect I have already forgotten I am on the phone, only the little voice coming from my pocket reminds me that just a moment ago I dialled his number. Only the hardiest stay close as the Emma they knew is long gone. I LOVE dearly those who have stayed, those I have met on the way, and those I have yet to meet in person because our relationship is restricted to online support groups as they are unable to leave the house.
So often people tell me I am looking well, and I do look well. But I am not well. Outings are usually timed when I have enough energy to wash my hair and leave the house, this is where the resting comes in. Only my husband gets to see the gritty side. And when I do see people I am ‘lighting up’ because there is still part of me that remembers the joy that life once was, and I find the most joy in connecting with people. I can walk into a room and nobody would know I had Lyme Disease. I can function quite highly when I need to but I can't sustain it and it's at a cost. I can draw upon tomorrow’s energy to engage in today, but there is always a consequence - there is never freedom.
Sometimes I am just filled with so much joy I could burst with excitement, this is never free energy, it usually precedes me being confined to the sofa once more, buzzing with exhaustion. Sometimes I dance across the room, with heavy limbs but light heart, and I hear my husband say ‘should you be doing that, you have to go out later’. I add a pirouette out of defiance but I only hurt myself.
Bless my husband who married me not knowing how ill I was, nor did I. He hadn't seen me at my worst because I lit up when he was around and crashed when he wasn't. He is only just making sense of what is happening to me and so am I. We have been friends for 20 years, we met just before I got sick but it was just 2 years ago that we had a whirlwind romance in England when I was home for the summer and after 10 months of long-distance relationship we were married. He remembers me before I got so sick, he remembers things that I cannot, he is my time machine to happier times.
Looking back I have no idea how I managed to return to England to make my vows in August last year, I wasn’t functioning, everything was just so hard and I was ever so limited in too many ways. Neither of us knew I would get worse. He could have left so many times but he remains by my side. He gave up the life he loved to move to Australia and whilst he works to support me in a country he doesn’t know, I live in the underworld that is Lyme Disease, useless and barely able to contribute to our life, a drain on his.
And I am one of the ‘lucky’ ones, my symptoms are NOTHING compared to some. I watch and hear my Lyme warrior friends struggle in ways I pray I will never have to, I can’t imagine I would be strong enough to make it through one day of the many years they suffer. For some it is too much, they choose a freedom I hope I never have to seek.
There is a small army of doctors, sufferers and researchers out there fighting for this insidious disease to be acknowledged by the world and treated with protocols that will help not hinder. These people risk their livelihood fighting the cause in a world of arrogance and ignorance and it consumes their life, one that should be spent with their loved ones, not fighting a system that slowly kills those it should protect. I want to fight too but the slightest stress leaves me shaking and exhausted for hours so I watch from the sidelines feeling useless but grateful that someone has my corner. This is THEIR life, yet they choose to fight for every Lyme sufferer…for you, because chances are Lyme Disease will affect someone you love.
Despite all of this I am grateful, Lyme Disease has changed my life in many wonderful ways and I have met the most wonderful people on the way. But I cannot take much more, I have always run wild in this world and now my skin has become my prison. I want to live again, existing in this battle is not enough.
I will not give up – I will win this war. And when it’s over I will dance my way through life, rain or shine.
It’s hard to capture the immensity of Lyme Disease in just a handful of paragraphs. But I will start with resting, because resting is what I do most. Resting has taken on a new meaning. It is no longer that fun experience of snoozing on the sofa, watching day time TV whilst chatting on the phone to a much loved friend about the wild weekend you had, or a lazy day lounging in the sun with a book. It is now solitary confinement with in my skin. A battle to do as little as possible in the hope of getting some relief from the bone-shattering fatigue, discomfort and cognitive dysfunction that has become my daily life. There is no relief, but resting stops it getting worse and will sometimes allow me to bank some enough precious energy for a special occasion so that engaging with life for a fleeting few hours is possible.
My body aches in so many ways and I can't cope with being on my feet too long. I am too exhausted to do anything useful and my brain is barely able to recall words never mind put them together in a sentence. People say ‘make good use of this time you have off work’ – I wish they could step inside my prison for just a moment to understand that this is no holiday. There is no making good use of this time, sometimes just being inside my body is the hardest and most gruelling thing I have had to do. Reading is out, it requires a memory and that disappeared long ago. Hobbies are an impossibility. As is loud music, bright lights and TV (although that's out for many reasons). Everything (most things) I love - loved, is no longer fun because the effort and consequence cancel out the enjoyment…and then there is the pain too. Did I mention frustration?
There are fleeting moments of ecstatic gratitude and love…but these moments are like the gasp of breath when you surface from the depths of water, before plunging under the surface again. Remaining in a place of gratitude and love is exhausting in itself, like treading water until you can barely hold yourself above the surface, it too takes effort and sometimes to simply feel nothingness is a relief.
I sometimes dread having to go into town in case I can't get a parking space near to where I have to go. Even making breakfast is a challenge, standing up AND making decisions; I leave an empty pan on a lit hob and walk away, forgetting. My career is on PAUSE, to be resumed. I can't function and the wonderful opportunity I have had to do what I love has turned into a painful realisation that I am too sick to look after myself never mind work. My love of study and research is gathering dust, awaiting the day when my brain can recall what I read just a moment ago.
Engaging with my beautiful friends has become a heavily planned (usually non-) event; will I have enough energy to drive, will there be a chair that I can rest my head, will I be able to keep warm? As the debilitating fatigue creeps in my cognitive function declines, the inability to make any sense when speaking takes its toll emotionally. Sometimes I hear myself and the words and sentiments are not even mine, and I wonder who just said that - that surely wasn't me. Is the bacteria eating their way through my neural networks rewiring me into someone I am not.
There are no fun plans to be made, not even for tomorrow, for tomorrow may bring a darkened room and pain. How could people understand that sometimes a simple phone call seems like an impossible task on so many levels, even if I was able to laugh and play earlier in the day. I have often phoned my husband and before we connect I have already forgotten I am on the phone, only the little voice coming from my pocket reminds me that just a moment ago I dialled his number. Only the hardiest stay close as the Emma they knew is long gone. I LOVE dearly those who have stayed, those I have met on the way, and those I have yet to meet in person because our relationship is restricted to online support groups as they are unable to leave the house.
So often people tell me I am looking well, and I do look well. But I am not well. Outings are usually timed when I have enough energy to wash my hair and leave the house, this is where the resting comes in. Only my husband gets to see the gritty side. And when I do see people I am ‘lighting up’ because there is still part of me that remembers the joy that life once was, and I find the most joy in connecting with people. I can walk into a room and nobody would know I had Lyme Disease. I can function quite highly when I need to but I can't sustain it and it's at a cost. I can draw upon tomorrow’s energy to engage in today, but there is always a consequence - there is never freedom.
Sometimes I am just filled with so much joy I could burst with excitement, this is never free energy, it usually precedes me being confined to the sofa once more, buzzing with exhaustion. Sometimes I dance across the room, with heavy limbs but light heart, and I hear my husband say ‘should you be doing that, you have to go out later’. I add a pirouette out of defiance but I only hurt myself.
Bless my husband who married me not knowing how ill I was, nor did I. He hadn't seen me at my worst because I lit up when he was around and crashed when he wasn't. He is only just making sense of what is happening to me and so am I. We have been friends for 20 years, we met just before I got sick but it was just 2 years ago that we had a whirlwind romance in England when I was home for the summer and after 10 months of long-distance relationship we were married. He remembers me before I got so sick, he remembers things that I cannot, he is my time machine to happier times.
Looking back I have no idea how I managed to return to England to make my vows in August last year, I wasn’t functioning, everything was just so hard and I was ever so limited in too many ways. Neither of us knew I would get worse. He could have left so many times but he remains by my side. He gave up the life he loved to move to Australia and whilst he works to support me in a country he doesn’t know, I live in the underworld that is Lyme Disease, useless and barely able to contribute to our life, a drain on his.
And I am one of the ‘lucky’ ones, my symptoms are NOTHING compared to some. I watch and hear my Lyme warrior friends struggle in ways I pray I will never have to, I can’t imagine I would be strong enough to make it through one day of the many years they suffer. For some it is too much, they choose a freedom I hope I never have to seek.
There is a small army of doctors, sufferers and researchers out there fighting for this insidious disease to be acknowledged by the world and treated with protocols that will help not hinder. These people risk their livelihood fighting the cause in a world of arrogance and ignorance and it consumes their life, one that should be spent with their loved ones, not fighting a system that slowly kills those it should protect. I want to fight too but the slightest stress leaves me shaking and exhausted for hours so I watch from the sidelines feeling useless but grateful that someone has my corner. This is THEIR life, yet they choose to fight for every Lyme sufferer…for you, because chances are Lyme Disease will affect someone you love.
Despite all of this I am grateful, Lyme Disease has changed my life in many wonderful ways and I have met the most wonderful people on the way. But I cannot take much more, I have always run wild in this world and now my skin has become my prison. I want to live again, existing in this battle is not enough.
I will not give up – I will win this war. And when it’s over I will dance my way through life, rain or shine.
Originally shared on LARA facebook page on December 13th, 2013. Facebook post can be seen HERE
