Thirty Things About My Lyme Disease

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Thirty Things About My Invisible Illness You May Not Know
created by: Christine Miserandino

1. 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.

2. I was diagnosed with it in the year: 2012. My year of healing.

3. But I had symptoms since: 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.

4. The biggest adjustment I’ve had to make is: 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.

5. Most people assume: 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.

6. The hardest part about mornings are: 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.

7. My favorite medical TV show 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.

8. A gadget I couldn’t live without 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.

9. The hardest part about nights are: 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.

10. Each day I take:  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.

11. Regarding alternative treatments: 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.

12. If I had to choose between an invisible illness or visible I would choose: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.

13. Regarding working 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…

14. People would be surprised to know: 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.

15. The hardest thing to accept about my new reality is: 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.

16. Something I never thought I could do with my illness that I did was:  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.

17. The commercials about my illness: 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.

18. Something I really miss doing since I was diagnosed is: 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…

19. It was really hard to have to give up: I really thought I was going to lose everything when I was diagnosed. Instead, I can’t believe how much I’ve gained.

20. 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…

21. If I could have one day of feeling normal again I would: Travel. I miss traveling more than anything.

22. 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.

23. I hate it when people: Assume. Don’t. Just don’t.

24. 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.

25. My favorite motto, scripture, 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

26. 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.

27. 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.

28. The nicest thing someone did for me when I wasn’t feeling well was: 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.

29. I’m involved with 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.

30. The fact that you read this list makes me feel:  Loved. Supported. Grateful.

 

Thank you. I love you.

 

{ 4 comments… read them below or add one }

julesz senn January 3, 2013

MY daughter got mono last year and strept too many times to count.Ever since she has a had time in the morning and doesnt have any endurance. She has had many test but i fear its lyme disease she has been bit by ticks many times.Can t get her doctor to test for it. She always tired and gets sick so easly been tested for many things but her docter refuses the lyme test Trying to get new doc Thanks for any help or specific test to be done

Reply

Susan Pogorzelski January 4, 2013

Hi Julesz,

Mornings were always rough for me as well, and my main symptom has always been fatigue — it’s definitely hard to fight through, and my heart goes out to your daughter.

It’s often hard to get accurate testing and a diagnosis by general practitioners due to both the political nature of the disease and because not many GPs are aware of just what this disease can actually do. My suggestion, based on my own experiences, is to try to locate a Lyme Literate doctor in your area — they specialize in Lyme and will be able to better guide you by getting accurate testing as well as offering a clinical diagnosis, as Lyme often is.

Please feel free to email me at twentyorsomething@gmail.com if you would like to talk more! Best to you and your daughter!

Reply

cj March 12, 2013

I think we are invisible illness doppalgangers (sp?). Your blog validates and eerily reflects my history/experiences/struggles of living with Lyme Disease & co-infection Babesia. I would not wish these illnesses on anyone, but in a very selfish way it is comforting that my experience is not unique. Someone else knows EXACTLY what my life has been like and can understand perfectly. It helps to have my symptoms/illness experience validated..

Reply

Susan Pogorzelski March 13, 2013

Hi CJ,

I can relate to what you say about finding it a comfort to share this experience with someone. You hate saying that, it feels selfish and you really don’t want anyone else to suffer as you have, but at the same time, you’re so grateful that someone understands what you’re going through. I think that’s especially true in this case with Lyme Disease and the co-infections, because it is such a silent disease — silent in the fact that doctors remain ignorant and thus we go years without finding answers, and silent in the fact that people remain ignorant to the serious dangers and suffering of this illness.

Validation is absolutely the right word…I’ve had people in my professional environment question the truth of my illness, in turn questioning my character by saying they thought I was making it all up. And then, when they realized I wasn’t making it up, they tried to further invalidate my experiences by saying I was playing the disease up — to what end, I still have no idea. Patients and those closest to us know the effects of this disease, and that’s the truth to which I cling. It’s a hard fight, but it’s worth it, and I think the more we share our experiences and realize we’re not alone, the greater the victory becomes.

Thanks so much for your comment…Please feel free to email if you’d ever like to talk. Wishing you all the best in healing and health.

Reply

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