I’ve been trying to come up with a way to express to the people who love me what it’s really like to live with chronic lyme disease but I’m at a loss. How can I possibly explain to a healthy person what it’s like to live in a body that is no longer my own? To mourn not only the life you once had but also the future you had been working so hard towards? And even if I could, so few would want to hear it. The unfortunate truth is that most people want to live in a reality of their choosing and a friend or loved one being chronically ill doesn’t fit well into their picture frame so they crop it out, leaving the ill behind.
As much as this hurts – and believe me, there is no pain like it – if you can find a way to keep your heart open those holes will start to fill with new friends, ones who have the courage and worth to stay around through your illness and who see that you are not your disease. And they are there to remind you of this when you too, find yourself forgetting.
You will mourn the life you once had and the life you were striving for, deeper and greater than you ever thought possible It will feel as if your body has died while your soul is screaming and clawing to escape, leaving you wishing with everything you have, to be able to do all of the things you desire to do. To live the way you desire to live, and for all of the abilities that the average person doesn’t even have to think about. In this you will find gratitude for so many simple things that you also had taken for granted in the past.
The lyme bacteria is a spirochette that corkscrews deep into your muscles, tissues, organs, bones and brain, where it protexts itself inside of an antibiotic resistant shell called biofilm. Here it rests, hiding for years even after treatment just waiting for its opportunity to strike again.
While some are hiding, other are screwing deep into every inch of your body causing joint pain, fatigue, muscle aches and spasms, eye pain, shakes, blurred vision, weakness, nerve pain, numbness, severe bloating and cramping, sciatica, noise sensitivity, feeling of general overwhelm within body for no reason, weakness, hair loss, fatigue, dizziness, heart palpitations, trouble concentration, internal vibrations, headaches, vision changes, memory loss, poor balance, night sweats, cold sweats, hot flashes, chills, rashes, dots in vision, disrupted sleep, bruising, jaw stiffness and pain, ulcer pain, vision processing issues, collapsing, aphasia, unexplained weight gain, hallucinations, psychosis, panic attacks, suicidal thoughts, migraines and much more. Lyme disease being the “great imitator”, often looks like MS, Parkinsons, ALS, Lupus, Rheumatoid Arthritis, Autism Spectrum Disorders, ADD/ADHD, Alzheimers, Dementia, TMJ, IBS, Chronic Fatigue Syndrome, Central Sensitivity Syndrome, Fibromyalgia, Depression, Anxiety, Panic Disorder, Bi-Polar Disorder, Schizophrenia and Psychosis.
Healthy people tend to think you’re a drama queen or a hypochondriac because they can’t understand how you can be in so much pain and have so many different ailments or diagnosis’ and still look fine on the outside. You learn to live in more pain than they can imagine, and you learn to appear like an average person on the outside while everything feels like its shutting down on the inside. It’s not healthy people’s fault that they can’t see it, so you learn to ignore their comments about your so-called-drama or hypochondria, or when they use these tactics to downplay your symptoms. Even the closest to you will do this. You will be shocked and hurt and still will learn to let it go because you can’t imagine possibly losing more people than you already have. Also, chances are you don’t have the energy it takes to stand up for yourself anyways and by now you know that it is impossible to explain to someone what they cannot see or feel for themselves.
You will start to embrace every joyous moment and take every opportunity to spread love and remind people that you love them because you know that even though you still look fine on the outside, inside the bacteria can be drilling into your heart, liver, kidneys, and every other organ, trying to shut them down completely. You’re very aware that there is always a possibility of going into organ failure. You also know that it could be attacking the parts of your brain that control communication and you could be left unable to speak, write, see, hear, etc. Suddenly it is more important than ever that those you care about, admire, aspire to be, respect, trust, all know how you feel and that the world knows who you really are before you’re unable to show it. Chances are you’ve already lost the ability to communicate at least once in your lyme journey and you never know when it might happen again and for how long.
Typical stressful life events that an average person could cope with actually cause you intense physical reactions and can send you backwards in your treatment – or if you are in remission, can send you back to being unwell. You start to resent the saying “what doesn’t kill you makes you stronger,” and learn to fight back the urge to tell people who say that to you during these stressful events that no actually, in your case it doesn’t make you stronger it makes you weaker, giving the bacteria their opening to attack, and that yes actually, it could kill you.
Every single morning you wake up in pain. Your legs feel like they have cinder blocks strapped to them. Your throat feels as though its been clawed. Even if you did manage to sleep through the pain you wake up feeling as though you just completed a marathon that you never trained for. Every inch of your body filled with overwhelming fatigue and aches. Feelings that were once so foreign are now the norm.
Although sometimes you are ravenous and others you can’t eat a thing without vomiting, you’ve likely had a lot of unexplained weight loss or gain. It doesn’t seem to matter how much or how little you eat, this doesn’t change. If you aren’t too nauseous to eat you’re probably too fatigued or weak to cook. Or your joints hurt too much to chop vegetables. Or you’re afraid to turn on the oven in case you forget and leave it on overnight – again.
You forget things, alot. And people around you will try to say that everyone forgets things, but you know yourself and you know that its abnormal. It feels as though someone has gone through your brain like a filing cabinet and plucked out hundreds of random files. You start to get good at re-routing your brain to remember names, and even when no one notices it never feels less embarrassing and becomes one more daily reminder that you are not the person you were or want to be.
Sometime amidst each day’s confusion you have to juggle your meds. There will be hundreds of pills and tinctures per week, each with a different set of guidelines. With food, without food, together, alone, with dairy, without dairy, with 8oz of water, with 2oz of water, right before bed, don’t forget you can’t lay down for 15 minutes after taking, and more. I’ve only been on treatment for 3 months and I’m on 164 pills per week. So far we aren’t taking anything away, only adding. 164 pills per week just to function like a below-average human being. Just to be able to work one job part time when I once thrived with 2 businesses and 2 volunteer boards. You will also learn to carefully respond when well-intentioned friends come up with the idea that the meds that are keeping you upright must be causing your symptoms.
There will be times when treatment will make you so unbelievably ill that you pray to whomever you pray to to take you, and yet when you’re off treatment you’re so disabled that you can’t even recognize yourself. On top of all of this you will undoubtedly experience overwhelming guilt for all of the things that you can’t do, the events you miss, and towards the people who have to care for you.
I hope that you won’t allow this disease to kill your spirit. That you keep your heart open to the incredible people who will undoubtedly appear in your life to help you through. That you will reach out and find other lyme warriors who will help you understand what is happening to you. That you won’t let condescending family, friends and doctors tear you down. That you will learn self-care and forgiveness. Most of all I hope that you too, will find gratitude and love and allow them to guide you through your journey, and that you never give up hope.
**Please note that I will have to come back and edit this later and may add to it, writing it has taken me a couple of days and typing it up took all the energy that I had for tonight. So although it is a first draft, I really just wanted to get it up!