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How My Husband and I Cope With Lyme Disease Through 'Loving Kindness'

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The practice of loving kindness has new meaning for me since Lyme disease. No surprise that the pain and burden of Lyme disease pushed me to my limit. Loving kindness is good place to go for help.

It is funny, recently a friend of mine remarked that my hubby and I treat each other with love and kindness in a way that is visible. Different from the way long-term couples often interact. She said that she and her ex never managed to get there, to treat each other with respect and kindness even in difficult times. I was so grateful to hear her observation and know it is true. We practice loving kindness with each other in my family.

“Loving Kindness” Helps With Lyme

I said we made a conscious decision to be kind in our treatment of each other. We really try to be consistently respectful of where we are. Don’t say things in spite or frustration that tear each other down. Give each other the space and support to heal and live.

This became so important after our Lyme diagnoses. I was diagnosed first, and as unexplainable pain and brain fog really started to affect me, I could feel my husband’s impatience and lack of understanding. I didn’t know what was wrong or how to communicate what I needed.

We were driving an old car with unbalanced tires. I would ride with vibration suppression gloves on and my hands crossed across my chest to dampen the pain. On certain bumpy roads I would just withdraw and weep in pain. It was hard for him to connect to my experience, but he was still concerned, kind, respectful and tried to help.

I had no energy. I had to say no to most social events. He was feeling lonely and I was very isolated. The pain in my hands and extreme vibration sensitivity got worse. My symptom load increased. At that point I couldn’t push a supermarket carriage. By the time I had a diagnosis, it hurt me just to touch or be touched. My world was shrinking, and that affected him. My pain was shouting in my body, but he couldn’t hear it.

Lyme Support From a Place of Love

Love and kindness motivated his help rather than understanding initially. He wanted to help me however he could. So my hub was the designated driver, taking me to doctors and tests. Love and kindness helped me not to take my pain out on him, at least somewhat. It gave me the will to own my experience without lashing out too much. Love and kindness gave him the will to stay the course and help me rather than cut and run.

Later after his diagnosis he got Lyme-induced gout and was in terrible pain. I had to drive him around. He said to me, I really had no idea vibration could cause so much pain. I am so sorry you were so uncomfortable for months. Now I understand. We both understand about chronic pain and how to help each other treat each other kindly.

That was a real turning point for us. We both recognized how defaulting to kindness save tons of unnecessary arguments and stress. It kept both of us in a place that helped us heal more easily.

How do you get to loving kindness?

Remember “loving kindness” as a default way to treat people in general and loved ones in particular. It can be such a powerful motivator. When I am frustrated with myself or someone else, I try to bring to my mind a loving thing I or they have done in the past. Remember I am lovable and worth loving and they are too.

One way to connect into the feeling is metta meditation. Metta meditation can have some wonderful benefits. Studies have shown it can reduce stress and increase compassion in those who practice regularly. Metta can help how you relate to others, but also decrease pain and support healthy self-esteem.

My meditation practice includes the mantra. I start with myself and use these words.

“May I be filled with loving kindness, may I be peaceful and at ease, may I be well.” (times three)

“May we (me and my husband) be filled with loving kindness, may we be peaceful and at ease, may we be well” times as many times as it takes to feel.

I repeat this, expanding the “we” to include more and more people. For an example practice of loving kindness meditation, click this link.

“Loving kindness” is a solid place for me to go to support healing. Try the practice in your life, I know it helped mine.

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What 'Success' Means to Me Since Illness Changed My Life Plans

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Recently I came across a quote by Nelson Mandela that immediately became a new favorite quote of mine because it spoke to me on such a personal level. In his quote, Mandela said, “Do not judge me by my successes, judge me by how many times I fell down and got back up again.”

I think one of the worst feelings is to be judged by people who barely know you. Everyone is guilty of casting judgements; however, through facing many unique adversities through my chronic illnesses from a young age, I’ve learned quickly just how cruel it is to judge a person.

From my long and tiring battle with Lyme disease and multiple autoimmune conditions, I’ve had my fair share of people who have harshly judged me. Thanks to makeup, a smile, and a good attitude, a lot of the times it is quite difficult to tell that someone is battling a chronic illness. Even at my sickest when I was unable to walk, I was still questioned by complete strangers on why I was in a wheelchair when I am such a young girl and appear to “be fine.” Yet, these people did not know the struggle I had endured and continue to endure on a daily basis.

Life is never easy for anyone and we are all facing different demons and battles.  What I’ve found is that people don’t put thought into that a person may appear to be “fine,” however they could be facing something that is detrimentally impacting their life. I am almost 25 years old, yet physically I have the health of someone three times my age. I am almost 25 years old, yet I am behind in life in terms of my finances and ownership of materialistic things that society tends to define what it is to be an “accomplished adult.” I am almost 25 years old, yet I feel as if I am twice my age in mental maturity due to facing numerous hardships from a young age.

When you are chronically sick, you live a secret life. You live one life that is what society sees — a vibrant, put together person and as if there is nothing wrong.

Then there is the “secret” life. This is the life that only yourself and your close family and friends see. They are witnesses to your struggles, the pain, and the battles you fight behind closed doors. The frustration of trying to keep up a facade that requires energy that you don’t necessarily have to live life as if you are healthy. This facade is a double-edged sword — you keep going despite the discomfort, yet people around you are quick to judge.

I often become very embarrassed when I evaluate my life. I was always a planner; when I was younger, I had a blueprint of my life all planned out, from my education and career to dates that I wanted to accomplish my goals by. When I became chronically sick, life as I knew it changed and things didn’t happen according to my planning.

At 16, I didn’t have the privilege of getting my driver’s license and my first car. Instead, my first set of wheels were those of a wheelchair. After high school, I couldn’t go to school for what I really wanted to go to school for — a firefighter paramedic.

Thankfully, as I regained my ability to walk and built up my strength, I fought my way through a very difficult journey to accomplish the goal of becoming a firefighter-paramedic. Throughout this journey, it has been quite embarrassing and difficult to explain to strangers, teachers, and classmates why I don’t have a car or why I can’t afford this or that as a nearly-25-year-old.

I’m tired of feeling ashamed for things that I cannot help. I fight a daily battle that most don’t know about and have been for most of my life. Somehow each morning, despite the physical discomfort my body feels, I muster up the courage to get up and fight another day — for my health and my future.

I do not have a car right now because my life didn’t go as planned. I couldn’t walk from ages 16 to almost 19 years old. I couldn’t get my driver’s license until I was 21 years old, something that took a lot of hard work in physical therapy and exercising on my own time to be able to get.  Why don’t I have a car right now? Because I am too busy paying for doctors and treatments that keep my body going and will hopefully bring me to remission. I am too busy paying for my education, which I refuse to give up on regardless of the hardships I face. I recognize that as an adult, materialistic things are just things. They are not important. What is important and is of utmost value, however, is my health… and I have been fighting relentlessly for it.

Just because I have not hit milestones that society deems what “should” be accomplished at or by said age, doesn’t mean I haven’t accomplished anything at all. I am alive and I am walking. I have fought tirelessly for things that healthy people take for granted on a daily basis. I have fallen, but each time I pick myself up and continue on. I refuse to let my chronic illnesses define me, or let society define me by what they think is successful.

So instead of feeling inadequate about my “shortcomings,” I will celebrate my journey and how far that I’ve come. I will celebrate all the days that I’m able to get up out of bed and walk, because at one point I wasn’t able to. I will celebrate who I am as a woman, because my tribulations have molded me into who I am. I will celebrate the tests I have been given in life as I continue to turn them into my testaments. Most of all, I will celebrate every time I have fallen and persisted to rise once more, and for that I will measure my own triumphs and know that I am indeed, successful.

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Reframing Illness: From Dwelling on Losses to Celebrating Gains

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I am transported back to a Winnie the Pooh episode where he is lost in the forest. He begins his journey confident, following a set route marked with sunshine and forward vision. Suddenly, the loss of an item in the wind steers him to stray from the path where the mood, scenery, hope and future steps shift to unknowing darkness. Panic grips him as he no longer has access to his original calm, happy route and is unable to locate a different or alternate option to remove himself from the darkness. Each new turn brings darker corners, horrible visions and mounting fear.

Until October 2015, I, like Pooh Bear, was fortunate to find myself following the first path full of light, hope, dreams, plans, happiness and security. Just as suddenly as his item is taken by the wind, so too was my health and control in all areas of my life including living location, work and relationships in addition to my health. I, unlike Pooh Bear, was chasing pieces of myself which Lyme disease stole. I found myself ill equipped for the dark, panic inducing new path which this disease thrust me onto. With each turn searching for answers and a way out I found darker depths, horrible visions which became my reality and mounting panic of being stuck in this despair forever.

Unfortunately, I have experienced a great deal of loss through this process. I have lost my life plan, relationships, self-esteem, confidence, patience, trust, happiness and abilities I always took for granted in mental, physical and emotional functioning. All of these, plus many more instances, led to a loss of my sense of self, but also a loss of my happiness. Waking up every morning feeling heavy, as everything about my circumstances comes rushing back is not a way to live.

A constant dark cloud was my companion, as I felt I was sinking and drowning in despair and the world kept beating me further into the ground. Walking around feeling as though your soul has been sucked out and there is a rotting hole in your chest with the prickling of tears in your eyes at all times is draining and damning. Losing my personality, natural aura, optimism and happiness have been devastating. Depression, as a symptom of Lyme, is to blame, but for months I again tried to “snap myself out of it” and berated myself for my inability to win out over these feelings.

Being a fixer by nature, I did not accept these losses and desperately fought them, draining myself of energy, beating myself up for not being in control of myself and not giving myself or my body the grace and acceptance I needed to realize this was not me, but was a manifestation of the bacteria and disease and would only be temporary.

Through all of these losses, however, my eyes have been opened to a multitude of gains, which far outweigh the losses experienced. I have been granted a new perspective of the world as I learned that if my life was going to be flipped upside down, I would invent a way to see right side up until I could flip back over.

Through each aspect of this illness and the changes in my personal life, it is so easy to get caught in a perpetually negative state of mind. Thoughts of ,“Why me?” and wallowing can spring up at any moment. Despite the pain endured and losses suffered, I have been blessed with an equal if not greater quantity of gains, which sometimes go overlooked. Daily, I am trying to live with a positive outlook of thankfulness for the bounty of good I do have.

My biggest blessing has been my family. My parents are two of the most loving, selfless, caring, amazing people in the world. They picked me up when I was at my lowest, have fought each step of this journey with me, have never stopped searching for answers and have been a continual source of positivity on the darkest days. I have gained a stronger relationship with not only my mom, dad and sister, but also with my extended relatives, who have outpoured love, support, kind words and prayers. I have gained parts of myself back from their tireless helping efforts and uplifting reminders. I am blessed to have such a safe, unconditionally loving, welcoming family.

I have gained an understanding of the type of people I want to surround myself with, open my heart to, as well as who is a true friend. This was a tough lesson to learn, as well as a painful one, when the person who meant the most to me walked away, as well as others in my life from lack of understanding, or the choice to not support me through the trials and tribulations of this illness.

Out of this pain I have gained stronger relationships with the friends who surprised me, rose to the challenge and loved and accepted me even more than they did before I got sick. I have gained memories and experiences as these amazing friends have kept my social calendar full, built my self-esteem back up and loved me unconditionally while constantly providing support in whatever way I need.

I have gained insight into the medical world, learning valuable health information, and a solid understanding of my body and mind. I am self-admittedly still in the process of learning to not put so much pressure on myself, ease up on my perfectionist ways and hold myself to a standard that is actually achievable, remembering John Steinbeck’s words, “Now that you don’t have to be perfect, you can be good.” I have gained the ability to listen to my body and am doing a better job of accepting when I am tired and actually listening instead of continuing to push myself.

I have gained the ability to open up and share with others when I am struggling rather than holding it all in. It is still uncomfortable and not my nature, but little by little, I am learning. I have learned that it is OK to ask for help when you need it. I have gained the understanding that it is important to be receptive to constructive criticism and feedback, reflecting and making changes if needed. I have learned how imperative it is to be there for someone when they are not able to be there for themselves. I have learned the importance of patience and loving oneself. I have learned that too much control in life is limiting, rather than helpful. I have learned to question doctors, to ask until I am comfortable with information, to research, and to be my biggest advocate. I have gained insight into what truly makes me happiest.

Most importantly, I have gained the ability to not let the little things in life bother me. When you go through something so monumental and have seen the deepest, darkest days, everything else is put in perspective. Days or circumstances that I used to complain about I now celebrate. I don’t “sweat the small stuff anymore” as they say, and I notice the beauty and blessings in the most minute aspects of my day.

Moving forward I know how positive my life is going to be, and I am thrilled to know that I will have a matching positive mindset. I have a student who when asked, “How are you?” responds every single time with, “Great! It’s the best day ever!” I want to adopt this zest for life with the realization that it is the best day ever because I am functioning, I am getting answers, I am getting better and the best is yet to come.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Why We Need to Talk About Health Anxiety in Chronic Illness

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If you were to ask me, “What’s been your worst symptom of Lyme disease?” I would tell you it’s not the pain, or the fatigue, or the brain fog, it’s the unrelenting health anxiety. With the other symptoms, I can trust myself and take the appropriate steps to feel better. When it comes to health anxiety, it takes over my mind and I succumb to downward spiral thinking that often ends up with a trip to the emergency room.

According to the DSM-5, “health-related anxiety is a non-pathological response to a serious illness.” In other words, when you’re sick it’s perfectly normal to be anxious about your health. It’s good to be aware and alert, but when not kept in check, health anxiety takes over and becomes counterproductive to healing (and then I become anxious about how the anxiety is impacting my health and the cycle continues).

People rarely die from Lyme disease; however, it does happen, which causes me to be hyper-vigilant. When a previous symptom returns, I don’t worry, but with Lyme disease, new and worsening symptoms are frequent and change with every adjustment in medication. Each time a new symptom crops up (like a sharp pain in a new location or fluttering in my heart), a new wave of anxiety rushes over me. I’m afraid to take new medications and supplements, because I never know what new symptoms will be unearthed. I’ve also developed extreme body awareness, so I feel every single skipped beat and see every new mark, lump or bump.

I’m not alone in this. Many people with chronic illness experience frequent health scares. The difference between this and other symptoms is it’s rarely talked about. Personally, I’m afraid to look irrational, or seem like a hypochondriac, so I keep it to myself. This creates more anxiety, because I worry if there is something wrong with me, and criticize myself for not being stronger. If more people talked about it, we could build more support within the community.

If doctors and hospital staff were more aware of how health anxiety manifests in chronic illness patients, they could do a better job of sensitive and help navigate possible solutions. They could be compassionate to the fact that with each new prescription or invasive procedure comes a host new of worries, and have open conversations about the risks. Too often, I get told “not to worry,” which is easier said than done. However, I must give credit to the doctors who have gotten to know me and consider “peace of mind” a reason to run a test, and try not to overload me with medication and supplements.

After about year of feeling stuck, I started searching for answers. I learned about Mindfulness Based Stress Reduction (MBSR). MBSR uses mindfulness techniques and body awareness to reduce negative thinking. Mindfulness breaks the cycle of ruminating on the past and the future. It’s an excellent treatment for health anxiety in chronic illness patients, because it is designed to help both adaptive and maladaptive stress. I found a course at a local hospital and signed up.

In my class I learned about meditation as a way to quiet the “monkey mind,” the uncontrollable thoughts that bombard us throughout the day; and I trained myself to think with a “wise mind,” a balance between the emotional mind and the rational mind. I learned to trust my gut instincts, but to temper my emotional response with a rational problem solving approach.

This mantra from “The Last Best Cure” by Donna Jackson Nakazawa has been a big help when I start to feel the panic set in: “These symptoms are present now, but they will go away again. And, if they don’t go away on their own, I can take action, call the appropriate doctor, go in for tests if need be – and yet still remain free in my mind to find beauty and joy and quiet as I do so.”

While my health anxiety is far from gone, it has improved with mindfulness meditation and positive self-talk. It’s become less about hoping I will never have a new symptom to learning how to cope when a one shows up.

My wise mind is becoming more reliable, and my monkey mind is finally taking a much needed break.

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Dear Kelly Osbourne: No, Your Illness Is Not 'Trendy to Have Right Now'

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I don’t know you personally, but I’ve always had a great deal of respect for your bold hairstyle choices. We’re alike in our desire to stand out, in our love of patterned skirts and winged eyeliner. I’ve also just learned from recently released excerpts from your book “There Is No F**cking Secret” that we are alike in that we have both lived with an invisible, chronic illness: late-stage neurological Lyme disease.

My heart hurts to know that you too have been touched by illness — that you too may have felt your body turning against you, your brain acting as if it was not your own. Within just the short excerpt of your book that was shared online, your story contains so many parallels with those of the chronically ill: unexplained, seemingly-disconnected symptoms. Medications that don’t work. “I can’t live like this anymore.”

I’m so glad the explanations and the medications eventually came for you, Kelly, but for so many, they never do. That’s why advocacy is so incredibly important and it’s why your voice means so much to those of us who are ill. It’s also the reason why the way you’ve begun to use that voice is so disappointing. Here’s the quote from your book I’m referring to:

“I’ve kept quiet about my Lyme disease, not only for fear of pharmaceutical companies coming after me because of the cure I found in Germany but also because it seems like the trendy disease to have right now, and I’m tired of seeing sad celebrities play the victim on the cover of weekly mags. Since I know firsthand how awfully debilitating it is, I know who really has it and who is just trying to prolong their 15 minutes. I don’t understand how anyone could think that the life you have to live with Lyme disease is glamorous.”

These are harsh, heavy words, Kelly. They’re also fundamentally untrue, and the chronic illness community needs you to understand why.

Lyme disease is not the disease to have “right now:” It’s a disease that hundreds of thousands have been silently struggling with for years and years. Many have been misdiagnosed and mistreated by doctors, as you were. They’ve been cast away by loved ones who don’t understand the complexity of their condition, left afraid to speak up because they’ve been told their illness is “in their head” more times than their foggy brains can recall. By referring to your illness as a “trend,” you’ve missed an opportunity to tell the world how common Lyme actually is, and how hard it is to accurately diagnose.

By referring to your illness as a “trend,” you’ve also suggested that it’s something people would willingly want to have, or say they have. Did you know that this is actually a common, incredibly hurtful misconception about those with chronic illnesses? It follows patients from their doctors appointments to their dinner tables, and it can be an enormous roadblock in both receiving an accurate diagnosis and receiving support. The suggestion that I could be somatizing or exaggerating my own symptoms greatly slowed my diagnostic process, and it planted seeds of self-doubt that have been far from an asset to my recovery. Somatization is something model and model-mom Yolanda Hadid was also accused of on The Real Housewives of Beverly Hills, which brings me to the topic of those you’ve called “sad” celebrities. “Sad celebrities” who “play the victim on the cover of weekly mags,” to be exact.

I don’t know what you see, from your angle, each time a celebrity opens up about their experience with a chronic illness. But from my angle, I see visibility, hope. I see Mighty commenters and members of online Lyme support groups expressing their deepest gratitude that someone finally validated the way they have felt for so long, that reading about a public figure’s journey helped their family members understand them better. If it wasn’t for Yolanda Hadid’s choice to go public about her life with Lyme, I may have never known to seek out my own diagnosis. Would you have known to, either?

“Since I know firsthand how awfully debilitating it is, I know who really has it and who is just trying to prolong their 15 minutes,” you continued. But, Kelly, you cannot possibly know who has and does not have Lyme disease, no matter how difficult your own experience has been. And stating that you can only serves to exacerbate another misconception about illness: that is can always be seen. Assuming something that isn’t outwardly visible, or doesn’t “look” like your own experience with illness, isn’t real only serves to further isolate those whose experiences we don’t understand, and invisible illness is isolating enough without assistance.

Your upcoming book is not an illness advocacy book, and that’s OK. But you’ve put yourself on the Lyme list and people are listening to you. So when you speak about your experiences, try to remember the person you were when you first became ill. Try to remember the deep hopelessness, the exhaustion, the need for understanding. If someone doubted you, try to remember what they said and why it hurt you so deeply. Those of us who live with chronic illness face enough doubt on a daily basis — we don’t need your doubt, we need your support.

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Recovering from Lyme Disease Is Like Climbing the Basement Stairs

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I had my first visit with a Lyme-literate doctor last June. He listened to my story, the details of my health struggles, understood the pain and the long months of going undiagnosed. Then he offered me hope. He told me that I have Lyme disease and that he knew I could improve. I have since visited him every six to eight weeks. I’ve been told the same thing several times: It took you a while to get down into the basement, and it’s going to take you a while to climb the stairs back out. Every symptom you have had will flare back up. And the last symptom to leave will probably be the first symptom you had.

You see, Lyme is so difficult to diagnose. What started out as a horrible backache slowly changed into so much more. Every few weeks a new symptom would appear. Stiff neck, numbness, nerve pain, tingling, muscle pain, eye floaters, joint pain, anxiety, depression, unable to sit, and the list goes on. I saw doctor after doctor. I was diagnosed with a wide range of issues ranging from slight bulge in a disk to it all being in my head. There was “nothing wrong with me that would cause me to be in the pain that I was in.” For over a year I slowly descended into the “basement.” The basement was a dark place that I hope I never return to again. It’s hard to even let my mind go back to that time.

But I’m climbing the stairs back out of the basement. My doctor told me I would experience it all again. And I did. And I still am.

There was no magic pill to take to make me better. The antibiotics and IV treatments created a Herxheimer reaction. It’s the Lyme rearing up and fighting back against what is trying to
make a person better.

Standing in the darkness of the basement I looked up for the sunlight at the top of the stairs. It was so hard to see. It was a tiny glimmer of light, of hope. The first steps up were full of wondering if I would ever feel improvement. It was a struggle. It was pushing myself to
believe that the treatments were helping me. It was exhausting. It was painful. It was scary. There was no magic pill to take to make me better.

But my family was there with me every step. They encouraged me to rest. They drove me to my treatments. They cooked and cleaned. They listened to my pity parties. They were always there pushing me up, encouraging me to believe. My friends sent cards, texts, and asked about my health. And slowly I noticed little changes. I noticed that I could sit down and eat dinner without hurting. I noticed that I could staple some packets at school and it didn’t bother my back. I continued to climb. Each step was like a mountain to climb.

The improvements happened so slowly. It was sometimes hard to tell that I was feeling better. It was more of a reflection of, “Last year I couldn’t do this, now I can.” Or, “A few months ago I couldn’t go to the grocery store, but now I can.” It took months to climb a single step. The new antibiotic threw me back into brain fog and constant fatigue and wanting to sleep all day. But then I would notice that I could ride in the car for more than 20 minutes. Slow and steady. As long as I am climbing up, up, up!

I think that I am well over halfway up the stairs now. I can see the top! I’m getting closer to my goal. I still have symptoms. I still have pain. And I still have Lyme. But I have learned so much about myself on this long journey. I have learned so much about the power of positivity. I have learned simply to believe I will make it out of the basement.

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