Not sure Who I am Anymore...ramblings

http://lymeandtheco-infections.blogspot.com/


I am not fully sure who I am any more. This could be Lyme talking or it could be me, recovering from a lifetime of doing everything for everyone else. Lyme could be unleashing the real me. The independent self-indulgent-pleasure-seeking-don’t-give-a-darn –about-anyone-else-me.

I have been sick and not required to do anything for so many months that I can no longer discern duty from desire. From rest and sloth, from greedy desires to stay in bed and eat bonbons or self-discovery at the age of 52.

I have been so very good. I have raised 6 children, married twice, cleaned and lived in dozens of homes, cooked millions of meals, with endless pots of macaroni and rice pilaf, watched hundreds of soccer game in the mostly bitter cold northeast, picked up noisy carpools, listened to girlfriend’s infidelities, read books I didn’t’ really even like for book clubs I didn’t enjoy enough. I think that I am done. I hope and I pray that I am done. Done appeasing, applauding, and wondering. I am tired out. Maybe that’s why I got Lyme. Like all those self-helpers out there say, “You create what you need.” Or “you get what you deserve “You plant the seeds of your bounty”. ….or what ever the saying is for what I feel.

I am sick of swallowing pills and waiting to see how many hours until something arises- like nausea or headaches or crying jags. I am sick of moping and wondering when it will end; what I should be doing and why I am not doing things better, quicker, fuller, happier.

I am sick of driving to doctors and hoping for some new improved way of thinking, a clue about how my body is really doing. Is the battle being won, or am I at Waterloo, or the Battle of the Bulge? Is it the Revolutionary War or the Civil War or The War of the Worlds- that never really happened except to a few dopes who happened to listen to the radio at the wrong time. They didn’t’ hear the preamble, the warning that this was only a story, an amusement, or a test,…nothing but a test.

Isn’t that what it feels like after all? I mean I have a disease that doesn’t exist to most, that causes doctors to live in fear of losing their license to treat you. That people don’t get. A disease that has countless infections that don’t test positive. A disease where if you test positive it is a good sign because at least you are mounting a response, unlike the unlucky f..ers who just feel like sh..t and don’t test positive to anything and are told to take more Celexa, or Ambilfy.

I went to a conference with a Lyme expert and he said if you had a science fiction movie disease it would be Lyme. It (Lyme) can do anything. It can travel through tissues faster than blood, it could go anywhere- do anything. Make you numb, give you toothaches, swell your joints and then just as rapidly, unswell them. It can make you think you are unlovable, cloud the smartest brain and ring eardrums while you sleep. It can make you cry in the middle of the night when you least expect tears. He said that it(Lyme) can tease your immune system- stick its tongue out at your blood cells and then within seconds join its head to its toes and flip inside out so your white blood cells never even saw it. Even your cells are confused about what is happening around it. Am I infected or healthy? What is going on?

Add to this some germs that behave like malaria. Live happily inside your cells only to burst out, unannouced when it pleases. An unwelcome guest inside your brain. Named like a cute storybook character, Babesia. It sounds huggable and sweet, like the cartoon deer that lost its mother too young. Despite its sweet label , it gives you sweats and bone breaking chills and headaches that feel like you have entered a Bosch painting of Hell. It makes you dizzy and irritable. It makes you think of ways want to kill noisy children, machines that whine, or people who speak loudly. It makes you fell dizzy, like an unsettled boat- one minute you are about to fall in murky water.

Add to this a bacteria that sounds like an Italian pastry or a special pasta dish. The waiter would roll the words “Bartonella” off his tongue and it might sound tasty. It is perhaps the cleverest of all infections because it so very subtle. You and your doctor do not even think of testing for it. And why bother, as it is nearly impossible to test for, and even harder to treat effectively. It is so subtle it just makes you feel cranky and as if you woke up on the wrong side of the bed. A little sorry for yourself. It is indeed self-indulgent and slowly it whittles away at your self esteem and convinces you that in fact you are unlovable. It can make you believe every bully that you have internalized inside your brain. Every insult thrown at you as a child or a full blooded adult. Ahh, Bartonella perhaps the cruelest infection that give you stretch marks, burns your bones and toes.

OH WOW
I am going to keep a copy of this. It is so perfectly said and described and I share it all!!... My goodness.
The parts about doing the duties all these years.. and being done.. and all the infections that each eat at you in various ways. And how well people do not understand.
My family and friends getting angry at me lately because I do not call them or answer my phone enough or email enough.. i try to explain.. but it does not matter. They can not imagine what i am gong through. When i say I am sick they think of a cold. They say lay there and watch movies and why can you call. What is wrong with your hands? They do not get it.. And I can not say the words near as well as you did..
That is an awesome way of expressing it all.
Thank you for that.. And also. i am so sorry you have to endure this or anyone has to..!!!! This is a horrid disease and a horrible way of life... and it eats me up every day... picking apart and picking at me just like you described..

I have only enough energy to say "Wow." Could not have said it any better. Take care.  D

What a great post! This accurately describes what most of us are going through and how we feel.

pcpc You are very eloquent you should write us all a book for the deaf unlymed. To describe it for everyone who doesnt have it to understand, and for everyone who cannot express it to there family and friends. You are darling.

AWESOME leter PCPC,

may i ask if its ok to show your letter to the new station here when they come to intervue me for the lymes awerness pice?

RD

pcpc - I usually have to skip long posts because I don't have the energy, comprehension, short-term memory, etc. to read them. But, when I started reading your post I could not stop. I want to print it out and take it with me to ALL of my doctor's offices. When they ask "How do you feel?", I'll just hand them a copy.

Thank you.

pcpc:  WOW!  I feel just like the others did when they read your post!  Just like JELAINEP said, I'm printing a copy and taking it to every doctors appointment my sister has!  Your words ring truth, loud and clear!  That is exactly how my sister feels every day of her life, only then to hear criticism from doctors because she's depressed!  Her latest LLMD even said she was "blocking her own path to help"!  Well, I guess depression and sadness can do that to a certain degree, but when your sick and your body is battling a very serious invader, I'm not convinced that "thinking good thoughts" will cure you!!

Thank you for your very eloquent words!  Take care and God bless!