About My Lyme Disease
(Thirty Things About My Invisible Illness You May Not Know
created by: Christine Miserandino)
November 6, 2012
2010 - present
2010 - present
The illness I live with is:
Lyme Disease and a Co-Infection of Babesia. Sounds simple, doesn’t it? Only, living with this disease is anything but. Lyme Disease mimics symptoms of Lupus, Multiple Sclerosis, Huntington’s, Anxiety Disorder, Bi-Polar Disorder, Chronic Fatigue Syndrome, Fibromayalgia, and much more, and Babesia is a malaria-like disease. What does that mean, exactly? Lyme Disease is like having all of these illnesses invading your body. At once.
2012. My year of healing.
I was diagnosed with it in the year:
We can pinpoint it as far back as 7th grade, when I was somewhere between the ages of 11 and 13 (I was never good with timeframes) and diagnosed with “mono” for the first time, but not the last. However, we’re wondering due to the anxiety I had when I was as young as four if I could have contracted it even way back then. Well over 15 years without a diagnosis, believing this was just who I am. I feel like I’m discovering myself all over again.
But I've had symptoms since:
Giving myself a break. I never wanted to be sick, and I certainly didn’t choose this disease, but the guilt I’ve felt at not being able to function as a normal person has been overwhelming, to say the least. Not many people will understand the toll that these diseases will place on your body and your mind; they certainly won’t understand the emotional turmoil these diseases will put you through. The biggest adjustment has been in my own attitude: I can’t worry about what these people think — my one priority has to be to myself and to my healing, healing of body and spirit.
The biggest adjustment I've had to make is:
The easy answer is that most people assume that I’m not sick. I’ve certainly been met with some ignorance from people who believe because I’m able to go to work for a few hours or smile and laugh or even work on my writing that I’m fine, that I’m cured or that — the most ludicrous statement I’ve heard yet — that I was never sick at all. It hurts to not be understood, it hurts to have to fight not only for your life and livelihood, but for your character and sense of self.
One of the greatest lessons I’m learning through all of this is that I have a right to smile, a right to be happy, and a right to dream and pursue that dream, in spite of being sick. Being sick doesn’t change who I am. Well, maybe it does. This disease may have weakened my body, but it has only strengthened my resolve to continue to be the best person I can be for myself and for the people who matter, the people I love.
Most people assume:
The brain/Lyme fog. Imagine your worst night of sleep ever or your worst bout of insomnia or the worst flu you’ve ever had where you’re so fatigued, your body aches all over, and your mind is just a mess of confusion, poor memory, and you have a hard time distinguishing the dream from the reality.
Now magnify that by 10. That’s what Lyme Fog is like. That’s what the fatigue is like. It drains you and pulls a blanket across your mind wherein the world is muffled and you can’t make sense of anything. It usually takes a few hours after waking to clear, through my worst cycles. Now that I’m finally starting to sleep through the night, the mornings are beginning to get easier.
The hardest part about mornings is:
Here’s a confession — I’m not such a fan of medical TV shows. I used to love ER, but I never watched it religiously, and although I often begged for my own Doctor House (or Dr. Chase, just sayin’…) when I was searching for a diagnosis, I began to realize that medical diagnoses aren’t easily tied up in a pretty bow at the end of an episode. Though, for medical mysteries and cable television, it was pretty high on the list of good ones.
My favorite medical TV show is:
My iPhone. Lyme Disease is more isolating and lonely than I could ever begin to describe. For months I couldn’t leave the house except to go to the doctors or to my parents’ house where they would take care of me, and while most of my friends were great about stopping by, I craved the social interaction. I know what these diseases can do to relationships, and I refused to allow myself to give up on a community that has always been so important to me.
Already knee-deep in social media, I relied on Twitter, Facebook, and this blog for support, using it as an outlet to step outside myself, finding catharsis in talking and explaining and often crying through the worst of it. I will never, ever be able to thank you all enough for all that you’ve done for me, for how you have played a part in saving my life.
A gadget I couldn't live without is:
Going to sleep and staying asleep. It’s the nature of Babesia, that malaria-like co-infection to Lyme, that the germs are awake and ready to play at night. I never used to have problems falling asleep; rather, I would wake up, always, at 3am, on the dot and have trouble falling back asleep for hours. Now that I’m starting to get better, I’m finding it easier to sleep through most nights, with less-troubled sleep.
The hardest part about nights is:
Heavy-duty antibiotics, hormone medicines, an anticoagulant, and a shitload of vitamin supplements. 15+ years of Lyme Disease and my immune system has been shot; the difference I’m seeing from not only the medicines but the vitamins has been tremendous.
Each day I take:
I believe patients have to trust their instincts, trust their doctor (once they find one they can trust), and do what’s best for themselves. While I’ve researched alternative treatments such as homeopathic and holistic remedies and more technology-driven courses such as rife machines and IV treatments, I’ve seen marked improvements with oral antibiotics and I’m comfortable with this path, especially in knowing that my doctor and his family have been through the same and would never ask a patient to do something they haven’t done themselves.
Regarding alternative treatments:
It’s not an easy answer. Because whether you’re dealing with an invisible illness or a visible one, there will always be ignorance and always be judgements. Sometimes I wish my illness were more visible — at least, more so than the difficulty walking and ashen face when I was at my worst — because then, at least, those judgements are honest. But when you’re dealing with an invisible illness, you contend with people questioning you, questioning the illness itself, and questioning your character.
This is the lesson I’m still learning through all of this: To not worry about what others think of me. After all, this is my illness, this is my healing, this is my life.
If I had to choose between an invisible or visible illness, I would choose:
Regarding work and career:
It’s gonna suck. It does suck. All that talk about judgements and people questioning you aren’t coming from the family and friends who care about you but from the people who have to pick up the slack when you’re not able to talk without stuttering. They’re going to resent you. Their compassion and understanding, should there be any to begin with, is going to fade. And you’re going to cry and push yourself beyond your limits to show them that you’re trying, but it’s just going to make it that much worse.
You have to do what’s right for you: you have to do what you have to do to heal, to get better, no matter what anyone says, no matter how they try to guilt you, no matter how they try to tear you down. Because 15+ years of illness doesn’t heal overnight, and it won’t heal in six months, and maybe it won’t heal in a year. But it does get better.
So at times it’s going to suck, but there will be times when it’s great and you feel like yourself and you’re happy to have a purpose again. The point is to find that purpose. Whether it be your job or a passion or a dream that you pursue when you’re up at 3am because you can’t sleep or stuck in bed all day because you can’t move, you find a way to fill the void that this illness has created. Find a reason for being, a reason for living, a reason to fight for every tomorrow.
See? I may be learning slowly, but I’m learning all the same…
I’m pretty transparent. No, I’m not saying you’d be surprised to know that…I’m saying, I’m a pretty open book so there may not be too many surprises. I believe in honesty, especially in terms of this illness. Talking about it is what has helped me get through some of the darkest times of my life due to this disease, it’s what has connected me to others — those who are fighting this disease themselves or those who know someone who is — and I can’t begin to express how grateful I am that my story has helped others with their own.
I believe in education and awareness. I will sing that same song until the day after forever. Education and awareness are what breed compassion and love, and we can never have enough of either.
People would be surprised to know:
I have limits. Limits suck. I don’t even like to obey the speed limits, so how am I ever supposed to know when enough is enough?
The thing is, I’m ambitious, I’m a go-getter, and I’m a fiercely independent woman. I’ve always been the one who (gladly) takes care of others and I think a part of me has always believed that no one is going to do it for you, so you have to do it yourself. So to have to hold back and let someone take care of me, to have to watch someone do the tasks that were once so easy for me but are now so difficult, to have to depend on others has been so incredibly hard.
I push myself until I break, and then I keep pushing to see how far I’ll break. I think there’s a word for that…At the same time, I don’t think I would be getting better so quickly if I weren’t pushing myself, but I have to know those limits, I have to be aware of the warning signs, and I have to be ready to stop when I push too far.
Lesson #5112…and counting.
The hardest thing to accept about my new reality is:
I never in my wildest dreams thought that I would be able to help so many, just through connecting and just through talking. Just the acknowledgement that we aren’t alone in this can mean a world of difference, especially considering the isolation of this disease.
I also never thought I would be able to so actively pursue a dream, never thought it would come so close to becoming a reality. Little did I know how much I needed this to push me forward, to have me thinking about the future when the future seemed so dark and empty.
Maybe, in some strange way, this illness has taught me to dream in ways I never had before: to dream and actually believe that they could come true.
Something I never thought I could do with my illness that I did is:
Are non-existent. Lyme Disease is a hidden epidemic and highly political and controversial in its diagnosis and treatment. It’s sickening, really, considering how many are infected — most without even knowing it. This is why we, as patients, have to be the voice. This is why, even at our weakest, we will continue fighting to be heard.
The commercials about my illness:
Energy. I never really had energy, actually — ever since I was in 7th grade and diagnosed with “mono” that first time and then CFS in high school and college, I’ve always been severely fatigued. And somehow, I still managed to graduate college with scholarships and awards, get promotions in my job, buy and take care of (for the most part) my own house, and now, try to self-publish my first book. All while sick with Lyme Disease, all while never having the energy of a “normal” person.
I keep saying that when I’m better, I’m going to be a force to be reckoned with. I can’t even imagine…
Something I really miss doing since I was diagnosed is:
I really thought I was going to lose everything when I was diagnosed. Instead, I can’t believe how much I’ve gained.
It was really hard to have to give up:
A new hobby I have taken up since my diagnosis is:
Playing Words With Friends on the iPhone. It’s actually been really good for my mind, especially as I need to keep it active, even among the fatigue and fog, and the phone fits in the palm of my hand.
I lose every single game, though. Details…
Travel. I miss traveling more than anything.
If I could have one day of feeling normal again, I would:
My illness has taught me:
This illness has taught me more about myself than five years of self-reflection on this blog ever could. It has taught me my strength, my resilience. It has shown me my fighting spirit and that I am, above all else, a survivor. It has allowed me to grow my compassion while adding a layer of self-protection. It has shown me, above all else, that I am deserving of a beautiful life.
It has taught me courage. It has taught me how to be brave.
I hate it when people:
Assume. Don’t. Just don’t.
But I love it when people:
Here’s something: I want you to ask how I’m feeling; I want you to be curious about my illness. Because, to me, that shows that you care, that you see me not just as another body in the way of the world, but as a person. And Lyme Disease is so debilitating and so damaging to the psyche that it’s easy to take it personally when you ignore me, when you pretend I’m not there.
I may be ill, but I am still a part of this world. And I desperately need to be reminded of that very fact.
My favorite motto, scripture, or quote that gets me through tough times is:
“In the depth of winter I finally learned that there was in me an invincible summer” – Albert Camus
When someone is diagnosed, I'd like to tell them:
This will be the hardest fight of your life, in every way possible, but you will get through it, you will get better. Find something to hold onto and then, when you feel like you have nothing left and you can’t hold on much longer, hold onto hope. You’re not alone. You will never, ever be alone.
At least, not while I’m still here.
Something that has surprised me about living with an illness is:
This disease fascinates me. It horrifies me for what it has done to my mind and my body — my life — but the science of it all fascinates me and I can’t quite believe I understand all of it. Ok, well, most of it. These germs are smart — Mensa-smart. And the more I learn, the more I can’t believe that Lyme is not a word on everyone’s tongues.
It will be.
Sometimes it’s the littlest things that have the most impact, especially when you’re dealing with an illness such as Lyme Disease. My brother mowed my lawn for me every week in the summer and my other brother teased me and made me laugh when laughs were hard to come by. Friends called to check in or stopped by every weekend ready to share their smiles; some showed their support on social media through encouraging words, urging me onwards through recovery. My parents have brought me to every doctors visit, been with me every step of the way, learning and researching and hanging on through my worst moments. I love them. All of them, all of you.
I can’t even begin to express how grateful I am for all of it.
The nicest thing someone did for me when I wasn't feeling well is:
I'm involved in Invisible Illness Week because:
Ok, so, confession. I was supposed to fill this out in September, but I didn’t even know if its existence until yesterday. So…There you go.
The fact that you read this list makes me feel:
Loved. Supported. Grateful.