I Am Doing My Best and Then Some
(Written by a Lyme patient wishing to remain anonymous.)
I work really hard to fake being well. So when you see me doing "normal activities" it isn't because I feel better, it is because I have to get up and do something. If I don’t, it feels like I am giving up. If I lay in bed or on the couch one more minute, I will lose my mind.
I want a clean house. I want to cook your dinner. I want to do your
laundry. I am a caretaker. I always have been. Having said that, when
I ask for help, I need help. Having spent my whole life taking care of
you, it would be greatly appreciated if you would take that extra step
and do something, anything, which might make my life easier. When I
ask for help and don't get it, it makes it that much harder to ask the
When I do something that is not necessary, such as plant some flowers,
please understand that even though it will cost me too much energy, it is
my way of coping and finding a bit of enjoyment.
I struggle with depression, but do not assume that it is the cause of my
health problems. It is a symptom of the physical disease. When a person
has been ill or pain ridden for years, it is extremely hard to not struggle
with depression. Again, it is a symptom not a cause. Too often that is
the fallback diagnosis. If a health care professional can't figure out a medical reason, then it must be depression. I can tolerate that from a stranger, even though I find it extremely frustrating. It is impossible to accept when family and friends think that way.
My toughest daily decision is how much energy do I have today and what can I get accomplished with that. I frequently have to choose between accomplishing a chore or taking a shower. Which is more important today, getting the bathroom clean or doing laundry? Should I attempt to cook dinner for my family, which for the most part I can't eat, or should I change my sheets? Frequently, I choose to take care of you, but that is at my expense.
I want to try to express to you what living with Lyme feels like. Imagine how you feel when you have the flu. Hot, aching, headache. Now throw in joint paint and muscle cramps and twitching. Let's add a virus that is going to make you wish you would vomit so that your stomach would feel better. Add to that fatigue so bad that you literally count how many steps an action will take before you try to do that action. Mix in a few random rashes that itch like the devil. You are never able to sleep more than a couple of hours at a time due to the pain, muscle spasms, and never ending night sweats. The headaches can be so bad that any noise or light is painful. Mix in some depression and feelings of isolation and there you have it. I work extremely hard to put on a brave face and I try not to burden you.
When you are impatient with me it is emotionally devastating. Imagine my frustration at not being able to do what you are used to me doing. I am doing my best and then some. When you act like I am being lazy, it is devastating. I have been a lot of things, but lazy has never one of them. I am doing my best and then some. When you act like you don't believe in Lyme, or you can't understand why I am still sick after five months of antibiotics, it is emotionally devastating. I am doing my best and then some. When you ask me to do something, and I can't, if you get angry, try to talk me into doing it, or respond with disbelief, it is emotionally devastating. I am doing my best and then some. Lastly, when you make the following comments, "you don't look sick" or "I can't wait for the day when I ask you how you feel and you answer great". Neither can I. I am doing my best and then some.
This last bit is for health care professionals and disbelievers in Lyme. Please forgive the anger that I am sure is evident. There are so many people with the same set of symptoms and similar blood test results. Most of us show as having active Mono. I have tested positive for over four years. I have had so many abnormal blood tests with no medical diagnosis. If it isn't Lyme than I want to know what it is. Treat me, I want my life back. Lyme suppresses the immune system, so why keep running tests looking for antibodies? I don't produce them! Run a test that actually looks for the infectious agent. I am sick to death of being told by a doctor whose specialty isn't infections that I couldn't possibly have Lyme after being bitten over five years ago. Where do they think it went? If I had syphilis (closely related to Lyme), you would treat it aggressively. I have been told we don't have Lyme in Kentucky. Really?! My Lyme test is not considered CDC positive because I didn't have enough positive bands. I had two positive and three indeterminate, so explain those bands. Figure out what is causing those to show. Here comes the anger. Just because your arrogant highly educated self can't figure it out, don't tell me there is no way it is Lyme. Medicine is continually evolving, changing and adapting. It must in order to keep up with the continually evolving, changing and adapting nature of infections and viruses. LLMD's (Lyme Literate Medical Doctor) and Lyme clinics that you so derisively claim are a rip off, offer hope which is more than I can say for the 8-10 traditional doctors I have seen. When you condescendingly say you understand that it is hard to be sick for so long, you have no clue! If you can't be compassionate, you shouldn't be in the health care field.
Can YOU imagine what it is like to live with constant pain, weakness, muscle cramps, joint pain, digestive issues, headaches, rashes and fatigue? If you have a loved one that has Lyme or any chronic condition, put yourself in their shoes. Be compassionate, be patient, be kind, and above all, be helpful.
Note from KYLDA:
Depression is a very common symptom of Lyme disease. It has been proven that mental illness is caused by a chronic infection. If you know anyone who suffers from depression, please contact us. We can help.
Governor Steven Beshear Signs Kentucky's First Lyme Disease Proclamation For Month of May
Kentucky Lyme Disease Association would like to thank Governor Beshear for issuing Kentucky's first proclamation declaring May Lyme And Tick-Borne Diseases Awareness Month. May is internationally known as Lyme Awareness month and this proclamation makes it official in Kentucky.
We have some of the best doctors in Kentucky but unfortu-nately several doctors and nurses, alike, have stated that they were not trained to treat Lyme Disease and other co-infections. We still have doctors who think that Lyme does not exist in our state. There has even been patients who have been bit at our local parks, our lakes, and even in their own yards. Lyme travels on birds, deer, rodents, small animals and even our pets. If you have a pet, your risk of getting Lyme increases.
We still have doctors that do not recognize that a bulls-eye rash is indicative of Lyme Disease and telling the patient that it is a spider bite. (Please remember only about 50% of patients ever see a rash and it isn't always a bulls-eye). The patient is given a cream for the rash and leaves with no treatment. This leaves the patient vulnerable for the infection to turn chronic and can possibly spread to other tissues throughout their body.
If you suspect that you have Lyme and live in Kentucky, A PDF version of this proclamation is available below. Please print it and take it to your doctor just in case they tell you that Lyme does not exist in Kentucky.
© 2018 by Kentucky Lyme Disease Association