May is over so that means that Lyme Disease Awareness Month is too. I want to say thank you to everyone who participated in the giveaway and those of you who went out of their way to do Lyme Awareness Nails. Please go and check the hashtag #lymeawarenessnails
on instagram as there are some amazing designs from lovely people who deserve recognition for their work. I really hope that many people have found out about Lyme Disease and now know prevention, symptoms and the controversy around testing and treatment. I have shared a lot of information this month on my instagram @alintamcmurdo
, which I hope you have all read. Please share your knowledge about this disease and lets pressure the Aus government to recognise and treat it.
I also shared information in my Lyme Disease Awareness Nail Polish Giveaway
post, but there is one thing I think I have missed information wise. When I talk about some symptoms like fatigue and pain, they’re not the sort of fatigue and pain you feel after running a marathon. The fatigue is unrelenting, you are constantly out of it as your brain doesn’t have the energy to work well, and no amount of sleep helps this. The pain is widespread and isn’t relieved by any form of medication. The pain can be in the bones, joints, muscles and skin. It migrates around and can feel like a dull ache, stabbing pains or burning sensations. When I was healthy I wouldn’t have even been able to imagine the suffering that these two symptoms alone cause. Some symptoms seem like they can be worked around but when you look closer, even the most simple of symptoms still cause a lot of difficulty. When it comes to memory issues, it is easy enough to write a list when you know you have to remember something, but there’s nothing you can do when needing to remember a book, movie, memory or previous conversation with someone.
It’s so easy to forget just how bad certain symptoms can get. I always fall into the habit of doubting just how bad my suffering was at a certain point in life, but when the symptom comes back with avengence, I am reminded of just how bad it can get. If even I can doubt the suffering that this disease causes, then I can’t be angry at those of you who question the severity of Late Stage Neurological Lyme Disease. Some doctors have compared Lyme Disease to Cancer, Heart Disease and HIV/AIDS, and have come to the conclusion that a Lyme patients suffering is the greatest. I even have a quote from a Doctor who treats both HIV and Lyme Disease patients “Most of my HIV patients used to die … now most don’t … Some still do, of course. My Lyme patients, the sickest ones, want to die but they can’t. That’s right, they want to die but they can’t. The most common cause of death in Lyme disease is suicide. In the current day, if one compares HIV/AIDS to Lyme Borreliosis Complex patients in issues of 1) access to care, 2) current level of science, and 3) the levels of acceptance by doctors and the public, patients suffering with advanced Lyme Borreliosis Complex have an inferior quality of life compared to those with HIV/AIDS in NC. This statement may seem heretical to some of you, I’m sure. But I can say this with authority — and I am really the only one in this room today who has the intellectual and experiential authority to do that.”
I hope that helps you understand more about the severity of this disease in its late stages. You can also read my A Day In The Life Of Lyme
post if you want to know more about my life specifically.
Don’t forget though, that Lyme Disease, especially the debilitating late stage, can be prevented by wearing long sleeves when in tick areas. If you do get bitten by a tick, early diagnosis and treatment are so important. Late Stage Lyme Disease is preventable, this suffering is preventable, but the information about Lyme Disease needs to be out there. Whilst the government denies its existence, it is up to us to spread the word about Lyme Disease – we can save lives by doing this.
Again, thank you to those of you who have participated, it means the absolute world to me. The random winners of the giveaway are @chips7648 and @mrs.miscostello. Congratulations! I will message you both now and you will have 48 hours to reply or I will redraw new winners. I will be back next year with another great Lyme Disease Awareness giveaway. I hope that something has changed by then, but if not, then the fight will go on.