I would consider myself a positive person. Lyme disease on most days hasn’t changed that for me. My husband is soon to start his third month of treatment for this brutal disease. After $5,200 spent, two doctors visits, and many pills taken, recently he started to see a little improvement. There were about two solid weeks where most days were good days — not great of course, but there were days my husband laughed and woke up with zero brain fog and was able to feel halfway normal for the first time in months — maybe even a year really. I got to see the man I married break out of his shackles that the parasite borrelia burgdorferi have chained on him. It was a great view to see — I think it refilled both of our hope tanks and reminded us what is to come on the other side of this thing.

That is why it was so devastating to see his smiles leave, to see the disease creep back in over night and to awake with the feeling of no progress, brain fog, the same days of going to bed at 7 p.m. and the feeling of being right back at square one. These are the days of treatment that are the hardest for me — the days I can’t deny what this disease has stolen from our family: time, thousands of dollars, happiness, and health. These are the days that I mourn the loss of our previous life. These are the days when I look at my two sleeping babies and weep hoping they don’t remember this part of their childhood, when Daddy was so sick and Mommy was running on empty going to sleep at night thinking they didn’t get the best of us because this disease had stripped us of the ability to be at our best for the time being.

little girl sleeping on couch

little boy sleeoing

These are the days when I am unable to think long term, to plan anything, because I’m unsure of what the future brings. These are days when everything feels like unstable ground and I feel like I could crack at any minute. Most of the times when I write for mainly therapeutic reasons. In my words I basically give myself a pep talk, saying, I know things will get better, I know this won’t last forever. However, on days like this, I can’t stomach those words because there is a part of me that questions if those things are really true. My husband is due to up some of his most herxing meds next week. A “Herxheimer reaction” is when your immune system is so busy fighting what is trying to destroy it that it makes your symptoms 10 times worse for the time being, so needless to say things are probably going to get worse before they get better.

I know we will get through it — even on days like today when I question everything, when I cry typing — even on these days, I still know we will get through it, because we have no other choice… because these two people are counting on us.

toddler boy and girl sitting on a couch under blankets hugging

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Some people don’t believe I really have anything wrong with me besides the name of my diagnosis, and I kind of get it. I know I don’t look very sick most of the time. That’s because I don’t like people seeing me when I am sick. People with chronic illnesses usually don’t feel comfortable showing that side if they can help it. But can you blame us? Usually family and friends never quite know how to handle having someone in their life when there is a diagnosis of chronic illness. When someone gets sick, the common response is “get well soon!” but what are they supposed to say when it’s obvious you won’t get better?

Misunderstanding turns into judgement, where I hear things like:

“You were able to go out last weekend so why not tonight?”

“You really aren’t that sick – you have been going to class all week.”

“It’s not just a coincidence you’re sick every time you get stressed.”

Well, I don’t exactly have control over this kind of thing. Sometimes I will try to fight it, or I get so tired of being… sick and tired, that I do things I shouldn’t anyways. Having two beers with a friend will lead to inflammation, causing fevers, pain, and usually asthma. But I’ll go out and have a beer anyways, since I won’t ever get completely back to normal. No amount of bed rest will cure me.

Sometimes being sick the next day is worth it.

You see me on Facebook smiling, going outside or to social events. I am a 21 year old that’s supposed to be partying at bars after all. But I don’t show the temperature fluctuations I get, or the fact that the one picture was all I had energy for and then I went home. Some days I do feel better, but remember feeling better for someone with a chronic illness normally means being able to function temporarily, as it usually doesn’t last very long.

Professors in college have repeatedly questioned my doctor’s notes credibility, besides the fact that it has lettering from a major hospital and my doctors phone number listed on it. With so much contradicting day-to-day, chronic illness can start to seem fake even to the ones having it. I start to wonder if I am really sick, if maybe the medications I am on aren’t really working because it’s “all in my head.” I’ve seen the blood work on paper and done the testing multiple times but even hard physical proof can seem unimportant when so many important people in your life start to question your well-being.

I know most people never bother understanding chronic illness, as they shouldn’t have to. But for the ones that have them, please ask questions if you have any. The more you ask, the less guilt or burden is felt for having the disease. If my health issues are recognized then I don’t feel like I need to hide it as much. Nothing is more exhausting than dealing with symptoms and having to pretend like nothing is wrong. Please acknowledge I have something wrong with my body, and that it is a part of me. Be involved, you can ask what symptoms I’m having today. You can ask what my disease causes or what I can or can’t do. You can ask if I’m OK.

What I have is real. My condition is a chronic illness which has no known proven treatment or cure yet. I am in medical studies, following every research article I find and trying every option the doctors will give me. But it doesn’t have to be the elephant in the room or an embarrassing topic. So please ask me anything you want about it. It would be so nice to know that what I now have is accepted as a part of my life and can be validated by those I care about.

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Thinkstock Image By: IlkerErgun

In my younger years, I loved parties, loved going out with friends, and I always had to have something planned for Friday and Saturday. How that shifted when I had kids. For years after they were born, I planned nothing for the early evenings after work. I awakened early, worked a full day, had two small kids to pick up from daycare and was exhausted. I questioned how other working adults had the energy to drive their kids to activities. I did not volunteer to help with the kids’ after-school activities or get involved in community events. By Friday nights, I was completely wiped out. This was my new normal as a young parent; I never intentionally set out to be antisocial.

Once I was diagnosed with chronic Lyme, I withdrew even more from society. Here are six reasons why I’m not the social butterfly I used to be.

1. When the Lyme disease flares up, I can be too tired to walk down and up stairs or walk through several hallways. At times, I’ve been dizzy also. I just do not have the stamina to leave my space, travel, and return. When I’m not feeling well, every action requires a rest period and my body pays for it.

2. Lyme has affected my memory and my vocabulary retrieval. It’s created a brain fog in me that has nothing to do with “age.” (With treatment, some of my memory has returned and some of my brain fog has departed.) It’s not as easy for me to hold a “light” conversation anymore. It’s not as easy for me to hold a serious conversation either.

3. I don’t watch my TV. I don’t get to the movies. I cannot handle much stress or sadness in a show and my attention wanders quickly. Because my family has been through so much turmoil, I only want happy shows with happy endings. I prefer to read, and I read a ton, but I intersperse that with checking everything on my iPhone. So I’m not about to have a conversation with anyone about “Game of Thrones” or the latest Netflix series.

4. Small talk is hideous for me. I have huge issues on my mind – mainly, recovering my children (and me) from chronic disease. It’s difficult for me to listen to people talk about their successful child and complain about academic or athletic issues that I only wished my ill kids struggled with. It’s hard to hear about parents of healthy kids whine about driving a child to zillions of activities when I’m driving my child to zillions of doctor appointments. It’s hard to hear about family vacations when we don’t take vacations anymore. But I never say anything. I do care about others and I want to be a good friend. So I listen. It hurts.

5. I speak Lyme. Yeah, I can’t help it anymore. I gush Lyme and co-infections, International Lyme and Associated Diseases Society (ILADS) and Lyme Disease Challenge. Not everyone wants to hear how Lyme tests are frequently incorrect and how most infectious disease doctors aren’t familiar with chronic Lyme. You don’t get it until you get Lyme yourself. I might be excited about my advocacy work because I am desperate for change, but in truth, everyone has their own pet issue.

6. When I’m not feeling well, I become more introverted. I just want to hole up in my little home, on my big comfy bed and connect via the internet with the friends who are doing the same thing. I’ve even taken online personality tests and they differ based on how well I’m feeling! Flare? Total introvert. Feeling well? The extrovert and introvert sides are balanced.

I do love to see close friends. These are the people who innately understand me, many of whom also speak chronic disease, who are warriors and survivors, with whom I’m often quite comfortable. I have friends who are not a part of the Lyme community, who are not struggling, but are excellent listeners. Friends who make me laugh, who care.

I’m not always invited out, but when I am… well, I used to always go. Now… sometimes. If my family is in crisis, I stay closer to home because I can’t treat a cocktail party like a therapy session. I occasionally avoid seeing people who are friends because I don’t want to break down in tears as I try to gloss over how challenging our lives are right now. I find that when I do see people, I ask a lot of questions so that I don’t have to talk as much about myself.

Socializing should not require false smiles and acting ability. If it takes way too much energy, I end up back on my bed. And then I can’t get out and socialize.

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Thinkstock Image By: Jena_Velour

Chronic illnesses often come with side effects, some of which can turn simple things you took for granted — like getting a good night’s sleep or remembering which groceries to buy — into painstaking tasks. It’s only natural for a sense of grief and loss to follow — something Shania Twain said she experienced due to her battle with Lyme disease.

In a recent interview with Amazon Music, Twain explained that the reason she hasn’t released an album in 15 years is because she had problems with her vocal cords, which she attributes to Lyme disease. The loss of her voice made her feel as though “a part of [her] had died.”

“I was grieving the loss of my voice. I really believed I would never sing again,” Twain said. “I thought well, I’m a songwriter anyway more than anything else and I was prepared to write songs and accept that I was never going to be the performer of those songs anymore.”

Twain said she had to go back to vocal school and speech therapy to relearn how to sing. “I don’t know, determination kicked in, the more I wrote the more I was singing. So a lot of this time I’ve been away it’s just been working on getting this voice back,” she said. Her new album comes out in September.

Twain contracted Lyme disease in the early 2000s in Virginia, and, in an interview with CBC News last week, said that she actually saw the tick fall off her and soon began experiencing symptoms.

“I was on tour, so I almost fell off the stage every night,” Twain said. “I was very, very dizzy and didn’t know what was going on. It’s just one of those things you don’t suspect.”

Though she was diagnosed quickly, Twain said she didn’t realize her vocal issues were caused by Lyme disease until years later.

“It took all these years to determine that,” Twain said. “Then it was all about, ‘Now what do I do about it? How can I fix it?’ So that took several years, just working out what therapy would work for me, without even knowing how well it would work in the end.”

“Maybe you need to lose some weight.” I heard that many times before my diagnosis of Lyme disease. Sometimes people would say it with love and compassion and sometimes with scorn. I went to the doctors with pain and inflammation issues that were often attributed to my weight.

Each time I heard that phrase a little part of me shut down. I was a really chubby kid and grew into an obese adult. When you are really heavy it is hard to imagine a path to a healthy weight. In the moment of being called out, it feels like an impossible task.

Over time I began to internalize and accept the idea that somehow I deserved difficulty, fatigue, pain and inflammation problems because I was fat – really fat.

But I didn’t push back, in part because I felt so bad about my body and myself. So I had an infection that went on for years without treatment. I got worse and the pain and inflammation escalated. Sure, some of my symptoms were probably related to excess weight, but all of them? I lost trust in my body and my judgment.

Trust Yourself and Find an Answer

Friends and teachers pushed me to get tests done to find out what was going on. They pointed out to me that I was stuck in a negative feedback loop that was only making things worse. No one deserves the type of pain I was in. There had to be something else working in the background. They pushed me to buck up, take responsibility for my own health and investigate.

So I went back to the doctors and asked for help.

I got caught in the testing problems that many people with Lyme encounter. I tested negative three times with the Elisa assay, before I paid for a more accurate test out of pocket and confirmed Lyme. Subsequent tests also confirmed four co-infections. No wonder getting through the day felt like a siege. My body was under a multipronged attack and battling for its life.

After a hard-fought-for accurate diagnosis, a lot of care and the loss of a lot of weight, I know better. If you are in pain and are told you are getting old or too fat, get another opinion. Sure, be honest with yourself about how you are eating and feeling, but don’t blame everything on excess weight or hitting 50 or, or… Trust yourself and if you believe something is wrong, reach out and get the help you need.

Lyme Healthy Lifestyle Habits Have Double Benefits

Losing and maintaining major weight loss was an incredibly healthy thing for me to do. No doubt it puts less strain on my heart and my joints. Weight loss alone would not help me to recover from all the pathogens that had taken up long-term lease though. I needed serious medical help and self help to fight the infections, reduce inflammation and rebuild my ravaged body.

Building wellness has naturally helped me maintain a much healthier weight. I largely eat to replenish my body with nutrient rich whole foods. Low sugar and low irritants happen to be lower calorie too. Exercise every day moves my lymph and keeps my joints limber. I do this to feel good and support my immune health. Instead of using food to soothe, meditation is my go-to to help me relax and stay positive.

No one says, “Maybe you need to lose some weight” to me anymore. Sure, I could lose a little more, but my priority is eating and living in a way that builds wellness every day. Lyme is a great teacher and I am still learning from it.

I gained key insights from my diagnosis process. Listen to family, trusted friends and teachers when they are trying to help me. Tune into my self talk and address excuses. If I am making excuses for how I feel, it means I am off track. Pay attention – when my body asks for help, respond in a proactive way.

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Thinkstock photo via fraulein_freya.

As I lie here in seething pain at 4:00 in the morning, I can’t help but think of all the “advice” I’ve been given about my illness and how to avoid my all-nighters. I appreciate your well-intentioned words and I mean this in the nicest way possible, but please… shut your mouth.

My issues are something beyond your comprehension and when you offer these quick fixes to a complex problem, you belittle how I’m feeling and minimize my situation. I know you “don’t mean it that way,” but if you tell me to just “lie down and close my eyes” or “stop doing ______ and you’ll fall asleep faster,” I honestly want to smack you.

Here’s my night in a nutshell:

I take all my medicines as intended and lie down in my bed. I crack and twinge as the pains move about my body. I will toss and turn for as long as I can, trying to desperately find the “sweet spot” that hurts the least. Somehow there will always be those areas that will ruin me regardless: currently it’s my right side that is spasmodic below my ribs and both knees which are either throbbing or on fire.

When I’ve exhausted myself physically I move to the couch to attempt a new surface. I will sometimes pass out for a couple hours but otherwise it’s another fruitless attempt. I’ll make a warm cup of tea – but thanks to my memory issues I’ll forget about it until I find the cold mug on the counter around noon. QVC and the Game Show Network have become my best friends.

When I think I can try the bed again I slowly make my way back into the bedroom, trying not to pull anything, and get under the covers. As I lie there, I get the sensation that I can’t breathe. My palpitations begin and it feels as though I’m falling through the mattress. I can’t get a full breath in my lungs and no matter how I’m positioned, I feel like I’m drowning in my sheets. It got so bad that I slept on my floor for three months straight just so I could breathe a bit better.

The sun is now breaking and birds are chirping – a beautiful way to wake up by any standard, except I’m sleep deprived, in a great deal of pain and now I have to fight through another foggy day. I will take naps whenever possible or else I will fall on my face. I’m currently out of work due to Lyme disease which allows me time to nap – but that stops no one from judging me for doing so.

Allow me to say this loud and clear:

You do not have any idea what my life is like. You don’t know my body or my needs. Stop telling me what to do as though the answer is crystal clear because it isn’t. It’s hard enough getting doctors to believe the severity of my disease without having my peers adding to it. I am well aware of my situation and I have tried any and all methods to attempt to help myself through it.

If you must comment on my life, please do so respectfully and with regard to my situation. Offer support and ask if there’s anything you can do to help. If you have a suggestion, do not talk down to me when presenting it and don’t make me feel stupid for not trying your methods. There are certain things I cannot take/try on my protocol and there are others I have tried many times, to no avail.

People with chronic illness do not lose sleep the same way regular people do. Please be patient with us and understand that our road is long and uncharted. This rings especially true to anyone who may share a bed with us. We want to cuddle, etc. just as badly as you do, but when we feel trapped in a sarcophagus of pain all night long the very last thing we want is arms and legs wrapped around us.

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Thinkstock photo via rilueda.

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