My moving on from lyme journey
Donation protected
Lets get started with some facts….working with people with Autism has given me a new respect for facts!
- I have late stage Lyme disease. It sux. Really badly! (I think that’s a fact right?) Sure feels like one!
- Lyme disease is caused by the bite of an infected tick. I believe I was bitten on the coast in South Australia. I was a mad camper and loved nothing more than being in nature.
- I was diagnosed 15 years after being bitten and as a result of the misdiagnosis of “fibromyalgia/chronic fatigue” for that entire time the Lyme has now taken over my entire body and my brain.
- If I was diagnosed and treated 15 years ago a short course of antibiotics would have killed the bacteria.
- Lyme disease is the number 1 vector born illness in the world and is believed to be the next AIDS epidemic.
- Lyme disease causes a variety of symptoms, mostly pain and fatigue and if you are unlucky enough (or live in Australia) and don’t get diagnosed until decades later you may also suffer with neurological symptoms. That’s me.
- People with Lyme disease don't always look sick. We even have good and bad days. Some days you may think I'm fine! If you know me well enough though you know what a bad day looks like.
- Lyme disease is not recognized in Australia. We have some of the world’s deadliest animals but ticks carrying Lyme apparently don’t live here. They do however live just about everywhere else in the world. Go Australia, the lucky country!
- Lyme disease can be passed on to a baby in its mother’s womb.
- Lyme disease can be passed on to sexual partners.
- People die from Lyme disease.
- I don’t want to die. Not yet.
So that’s where I need your help.
All of the treatments I have had so far have not eradicated or even diminished the Lyme in my body. I need to go to Germany for treatment. It’s my last hope.
So as many have suggested I need to do some fundraising.
This is hard for me. Im usually the one helping others. Its what I do, its what comes natural to me, its how I earn my living, its what I love, actually its who I am. Being sick is taking that away from me and I don’t like it one bit. I have so much more I want to do with my life and giving to others through my work especially is something that I want to continue with. We are all born with gifts and I believe I was given the gift of having a big heart and not being able to use it to its full potential is “heart breaking”.
I also want to get better for my husband, for my self and hopefully for our future children. We want lots of babies! A whole tribe! Odai (my wonderful husband) would be the most amazing dad and I need to be healthy to be a good mumma bear. To be honest though I am just hoping for a life where I can enjoy things...walking doggies, dancing, drumming again would be great, the ability to stay awake all day, go places with my husband, go back to work full time and continue assisting incredible people with autism find employment, explore this magnificent world, write, read!!! Oh I miss being able to read a book, walking comes up again because that’s how much I miss it. Other things that may seem trivial to some but are so missed when you haven't had them for so long include a full night sleep without sweating so much that I need to shower three times, ability to think properly, a day without crying, the ability to regulate my body temperature, ability to enjoy the moment without screaming on the inside.
I have tried so much to get better. Herbal treatment, antibiotics, intravenous antibiotics that screwed up my system so bad that I lost my gall bladder. Now I need to try the treatment that seems to be the best fit. Well actually that’s not entirely true, it’s really just my last hope. It’s an option that I have seen a few people take and some have gotten better “cured” in fact, and others have not. Nobody really knows why it works for some and not for others. Its pretty bloody scary to think about going to the other side of the world to be sedated for 8 hours twice while they heat your body up to such a high temperature that it actually destroys stuff! But hopefully it eradicates these bugs that are slowly but surely destroying every cell in my body.
When my brain is having a better moment I’ll explain how the hyperthermia works, but you can Google it of course!
So folks, this is me putting it out there. This is me bearing my soul in the hope that you may listen and hear my cry for help. I’m starting to think that illness is a bit like an addiction, taking away any sense of pride you may have once had so that you can beg for what you need to get “fixed”. I would be happy with even partially fixed.
With a brain that was once bright and sharp I am now left with a fair bit of mushiness. I find it hard to maintain concentration, hold thoughts and most of all plan and carry out appropriate actions. Many days my brain feels like a washing machine just spinning round and round but with ideas leaking out and no cycle to put them back together nicely. This is known as “lyme brain” or “brain fog” and although the physical pain is constant and unbearable at times, the fatigue and loss of cognitive function is the scariest for me.
So it is with my “lyme brain” that am asking for your assistance.
If you are willing and capable of helping me get to Germany to try and get my mojo back….wow just the thought of it took my breath away…..then please “you are invited” as they say in Ghana to come and help this once bubbly, life loving dancing gal and you will be my angel for always.
With my heart racing right now I say thank you for listening.
Luv Aylee xx
- I have late stage Lyme disease. It sux. Really badly! (I think that’s a fact right?) Sure feels like one!
- Lyme disease is caused by the bite of an infected tick. I believe I was bitten on the coast in South Australia. I was a mad camper and loved nothing more than being in nature.
- I was diagnosed 15 years after being bitten and as a result of the misdiagnosis of “fibromyalgia/chronic fatigue” for that entire time the Lyme has now taken over my entire body and my brain.
- If I was diagnosed and treated 15 years ago a short course of antibiotics would have killed the bacteria.
- Lyme disease is the number 1 vector born illness in the world and is believed to be the next AIDS epidemic.
- Lyme disease causes a variety of symptoms, mostly pain and fatigue and if you are unlucky enough (or live in Australia) and don’t get diagnosed until decades later you may also suffer with neurological symptoms. That’s me.
- People with Lyme disease don't always look sick. We even have good and bad days. Some days you may think I'm fine! If you know me well enough though you know what a bad day looks like.
- Lyme disease is not recognized in Australia. We have some of the world’s deadliest animals but ticks carrying Lyme apparently don’t live here. They do however live just about everywhere else in the world. Go Australia, the lucky country!
- Lyme disease can be passed on to a baby in its mother’s womb.
- Lyme disease can be passed on to sexual partners.
- People die from Lyme disease.
- I don’t want to die. Not yet.
So that’s where I need your help.
All of the treatments I have had so far have not eradicated or even diminished the Lyme in my body. I need to go to Germany for treatment. It’s my last hope.
So as many have suggested I need to do some fundraising.
This is hard for me. Im usually the one helping others. Its what I do, its what comes natural to me, its how I earn my living, its what I love, actually its who I am. Being sick is taking that away from me and I don’t like it one bit. I have so much more I want to do with my life and giving to others through my work especially is something that I want to continue with. We are all born with gifts and I believe I was given the gift of having a big heart and not being able to use it to its full potential is “heart breaking”.
I also want to get better for my husband, for my self and hopefully for our future children. We want lots of babies! A whole tribe! Odai (my wonderful husband) would be the most amazing dad and I need to be healthy to be a good mumma bear. To be honest though I am just hoping for a life where I can enjoy things...walking doggies, dancing, drumming again would be great, the ability to stay awake all day, go places with my husband, go back to work full time and continue assisting incredible people with autism find employment, explore this magnificent world, write, read!!! Oh I miss being able to read a book, walking comes up again because that’s how much I miss it. Other things that may seem trivial to some but are so missed when you haven't had them for so long include a full night sleep without sweating so much that I need to shower three times, ability to think properly, a day without crying, the ability to regulate my body temperature, ability to enjoy the moment without screaming on the inside.
I have tried so much to get better. Herbal treatment, antibiotics, intravenous antibiotics that screwed up my system so bad that I lost my gall bladder. Now I need to try the treatment that seems to be the best fit. Well actually that’s not entirely true, it’s really just my last hope. It’s an option that I have seen a few people take and some have gotten better “cured” in fact, and others have not. Nobody really knows why it works for some and not for others. Its pretty bloody scary to think about going to the other side of the world to be sedated for 8 hours twice while they heat your body up to such a high temperature that it actually destroys stuff! But hopefully it eradicates these bugs that are slowly but surely destroying every cell in my body.
When my brain is having a better moment I’ll explain how the hyperthermia works, but you can Google it of course!
So folks, this is me putting it out there. This is me bearing my soul in the hope that you may listen and hear my cry for help. I’m starting to think that illness is a bit like an addiction, taking away any sense of pride you may have once had so that you can beg for what you need to get “fixed”. I would be happy with even partially fixed.
With a brain that was once bright and sharp I am now left with a fair bit of mushiness. I find it hard to maintain concentration, hold thoughts and most of all plan and carry out appropriate actions. Many days my brain feels like a washing machine just spinning round and round but with ideas leaking out and no cycle to put them back together nicely. This is known as “lyme brain” or “brain fog” and although the physical pain is constant and unbearable at times, the fatigue and loss of cognitive function is the scariest for me.
So it is with my “lyme brain” that am asking for your assistance.
If you are willing and capable of helping me get to Germany to try and get my mojo back….wow just the thought of it took my breath away…..then please “you are invited” as they say in Ghana to come and help this once bubbly, life loving dancing gal and you will be my angel for always.
With my heart racing right now I say thank you for listening.
Luv Aylee xx
Organizer
Aylee Affotey
Organizer
Balga WA
