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GOT LYME? MAKE A LYMONADE! -part 1

Lymonade anyone?In my first years as a Lymie, during the short occasions I was going out socializing with friends, I found myself talking about my Lyme disease. Usually people were talking about how great everything was going for them, what had happened at work, what shopping spree the girls had, what restaurant they have gone, and babies. None of those topics was contingent with what I had on my depressed agenda.

My days were passing at a totally different pace, in a different environment where I had to deal constantly with my sickness which had taken over my life. My sickness was ruling how my day would go. I never liked to identify myself as a sick person or make my sickness the mainstream of my life.

Let’s be honest! Who wants to hear sad stories? Who has time for this? Who likes to be around sick people? Most of the people treat this topic with politeness but never go into many details for many many reasons. Maybe they don’t want to know, or it is scary.

Maybe they don’t have the time. Maybe they try to avoid such uncomfortable topics which they might feel trapped thinking the sick person would ask for their help. Or maybe they want to spare the the sick person of feeling down or embarrassed of not being able to share the same glorious lifestyle as them. Maybe they feel pity and they acknowledge that if they show it, it might offend the sick person.

During those social gatherings me and my friends we were not reasoning on the same frequency. After a while I preferred to socially withdraw, invoking same sickness related excuses for each social event I got invented to. Back then I was depressed and I had no idea about it.

I felt I had nothing in common with my friends. They were going on with their fancy lives while I was fighting against the whole word, without them showing any bit of real interest in my cause. I was fighting the insurance company, their doctors, my employer, my friends and relatives who were telling me that it was all in my head.

Among the few allies there were my Lyme specialist, my family doctor and two of my close friends. They kept me going. They still do! My new Lyme diet was tough and because of it I stopped smoking as well. I had my last cigarette on June 30th 2011, on a terrace in Saint-Augustin, Florida.

For over one year I did not feel like going anywhere. More, I found repulsive the idea of doing so, just for the sake of some conventional gossip, superficial small talk and coming back home hungry after having attended a dinner party. Getting ready for a dinner party it was taking much longer than before. Most of the times I couldn’t eat any of the dishes served at the table due to my strict diet.

Couple of times I even got angry and thought that my friends should have considered asking me what I could eat or no, instead of just apologizing in the end for it. After it happened couple of times, I was not sure if they were doing it on purpose or not, but then I realized I was exaggerating.

Eventually I had reached the point where it did not matter anymore. They were doing it and that was it. I was tired of blaming people. I couldn’t take it anymore. Therefore I stopped calling and returning calls, I reduced the gatherings and visits to none. Slowly the invitations dropped to zero and I found myself alone.

LYME POET – THE STORY BEHIND THE NAME

Recently I have been asked on few different occasions why I chose The Lyme Poet as a pseudonym for my writing. What was the reason behind it or what was the connection between Lyme and my poetry.

To answer the question, I will say that Lyme and poetry are two of the things that describe me the most. I write poetry and I am a Lyme disease advocate. I even write poetry about Lyme disease.

As a chronic Lyme disease sufferer I have seen my health deteriorating to a point where I thought there was no turning back. Lyme stole my best years from me and threw me on a roller-coaster ride that I was not prepared for. It took me a few good years to get back on track.

That’s after I spent two years trying to get a proper diagnosis and seeing over twenty-six specialists who passed me on from one to another, shrugging their shoulders as they were unable to tell me why my health went down the hill so fast.

When I was in my late twenties, within less than four months, I went from 154 pounds (70 kg) to 99 pounds (45kg) and I lost my ability to walk without help. In addition, while I was fighting chronic pain, fatigue and having a wide array of debilitating symptoms (burning under the skin, muscle twitches, electric shocks in the limbs, numbness, migraines,etc.), I plunged into a depression that lasted a few good months. As a bonus, I developed anxiety as well. I had hit rock bottom when I was supposed to enjoy my best years.

Needless to add the levels of frustration and anger were skyrocketing. You can’t imagine how it feels to have your whole life, your future taken away from you. The perspective of ending up in a wheelchair for the rest of your life is not something that crosses your mind when you are in your twenties!

Due to my invisible illness and the lack of a real diagnosis, people thought I had become anorexic. I lost a lot of friends on the way because they were not able to see what I was going through and I had no strength or energy left to explain how I felt. I had doctors telling me my symptoms were not real. I never gave up looking for an answer.

If you are interested in knowing more details about my Lyme journey, you can read them here.

When I finally discovered that I had Lyme, my illness was already at the late stage, which meant the recovery was going to be a slow and lengthy process. I had change my lifestyle completely, make tabula rasa and find new ways to define my so called normality.

I turned into an obedient patient who alternated cocktails of antibiotics with homeopathic remedies just to ensure my liver had a survival chance. I went a gluten- free, sugar-free, yeast-free diet for more than five years. I downsized twice and adopted a minimalist lifestyle.

I had friends and relatives from all over the world bringing me medicine (antibiotics) that I was not able to get within my country. Thanks to Lyme I lost my job, my friends and drained my bank account.

Fast forward a couple of years. I got better and I learnt how to keep my Lyme symptoms under control. I got better at blocking or ignoring the pain and focus on the positive things in my life.

Therefore, I was able to see the silver linings of my condition. Lyme allowed me to reach my real potential, discover the myself and see things in a different light.

A few years ago I finally took a step and became a Lyme advocate. I realized that if I was not going to Lyme-educate the people around me, they won’t know what’s going on with me.

Last year, I started my own awareness campaign for Lyme disease. On A-ZLYME.COM website I wrote about Lyme disease in detail from how to diagnose it to ways of transmission and available treatments.

Some of my Lyme-related articles have been also published by THE MIGHTY and then featured by Yahoo. I was glad to see that I got such a wide exposure. What got me thrilled was the fact that my words reached those who needed them. I got messages from people all over the world who suffered from Lyme or had someone close to them affected by this illness.

The reaction I got from the readers humbled me. It was for the first time when I actually experienced the feeling of a support community. It encouraged me to continue my awareness campaign because I know somewhere around the world, someone needs to hear that he is not alone and that the symptoms he is experimenting are real.

TOP 10 WORST SYMPTOMS OF LYME DISEASE

If someone would ask me what are the most annoying Lyme-related symptoms that I ever experienced, I would have a list ready within less than a minute. As a late stage Lyme disease victim I experienced a lot of symptoms, mostly because my illness was not discovered on time. Thus I ended up developing neurological symptoms, muscles and joints problems, heart and circulation and digestion.

Let’s start the final countdown and see what are the insidious symptoms. Keep in mind that the list below starts with the less annoying symptom and ends with the winner, the most disturbing symptom of them all.

FLOATERS. Floaters are a common visual disturbance of the eyes. When exposed to bright light, a Lymie may see in vision dots, lines, or streaks ranging in colours from blue, green, yellow, or red. Floaters can prevent you from performing some activities that require using your sight. That covers a lot of the basic daily activities, from reading to driving.

BRAIN FOG and COGNITIVE PROBLEMS aren’t fun either. When you find yourself stopping in a middle of a sentence without knowing what you were trying to say, or looking for your words makes you feel like you are either a toddler struggling to talk, or a lost person with no idea of what’s going on. Both scenarios, you feel like awful. Needless to add that forgetfulness is your daily companion.

CHRONIC FATIGUE. Imagine your energy levels are completely depleted and a long night of peaceful sleep can’t help you reach a state where you feel better. Somedays the fatigue is so bad that you can feel it in your bones. You are totally zoned out and incapable of doing anything but dragging yourself from the bed to the couch.

PARESTHESIAS (electric shock sensations in the trunk or in the limbs). The electric shocks are far more disturbing than the numbness, tingling or itching. If you have to think which leg you put down first when you get off the bed, in order not to experience a sudden electric shock going from the lower back to the tips of your toes, then you must know what I’m talking about. Regular people, wake up and don’t have to worry about which foot goes down first. Some even jump out of bed. This Lymie can’t afford that risk, as I may crumble to the ground, unable to sustain my bodyweight while facing the unexpected shock and the pain caused by it. Experience makes you more aware of your own limitations and teaches you how to avoid certain triggers.

JOINT/ MUSCLE PAIN. The migratory pain is an unpleasant reality of Lyme disease. When you wake up in the morning, before leaving the bed or even before moving the feet or arms under the covers, you wonder what will start to ache first. Where did the pain move? Is it going to be on the knee as the previous day? Or somewhere else? Will it shift to the neck or the shoulder? There are endless variations.

MIGRAINE HEADACHES. Another annoying symptom is the headache. You’d say: “Come on! Everybody gets headaches!” I agree. The only difference is that a Lymie has to handle a throbbing migraine headache on top of other disturbing symptoms. It requires a lot of self-control and determination to stand and perform a normal activity like washing the dishes or preparing dinner while experiencing a combo of symptoms.

BURNING UNDER THE SKIN. The “famous“burning sensation mentioned by all Lymies, refers to the sensation of having your body on fire. The fire can migrate from one area to another and change its intensity. If you want to read about about this read my previous post.

SHORTNESS OF BREATH. Walking up one flight of stairs without gasping for breath? It’s not due to the lack of exercise! Feeling like you are running out of air is not an unusual symptoms among the Lymies, especially those diagnosed with Babesiosis co-infection. That can trigger shortness of breath, chest pain, vascular headaches and so on. Lyme gets you the whole ordeal.

HEART PALPITATIONS. Most of the chronic Lyme sufferers have learnt or experienced that any sudden move, small physical effort, even a good laughter or a bigger meal can make you feel your heart is about to pop up, come out of your chest.

HEART PAIN. There’s nothing fun in feeling or going through the symptoms of a heart attack. When you lie in bed (that’s if you made it all the way to the bed, otherwise you may be lying on the floor) with your hand clutched to your heart, trying to miraculously make the pain go away or at least reduce its intensity, offering your poor self some comfort, you know that it is by far the worse symptom you ever have experienced.

The level of pain experienced by a late stage Lyme sufferer can vary from short-term and mild to excruciating long-term or any combination in between. People experience pain differently. The above list is based solely on my experience.

What are your top 3 worst symptoms?

THE PAIN OF NOT LOOKING SICK

When you suffer from an invisible illness things are more challenging because you need to deal also with the pain of not looking sick. It feels awful being in pain, living in pain and not being believed. When you have to constantly explain yourself and convince others that your sickness is real and you are not hypochondriac, it is a horrible feeling.

Take a look at my photo above. At a superficial glance, there’s nothing wrong with me. I look just fine! That’s where everyone is wrong! Little you or others know about the war going on under my skin, about the long list of invisible symptoms I experience. I used to get annoyed whenever I was judged based on my appearance, while I was struggling to look “normal”. A few years back I took another approach: I started to Lyme educate everyone. I did my best to explain all that entails being a Lyme sufferer.

Once in a way when I attended a social gathering or when I met someone new, I was faced with the the same issue: everyone kept on telling me I looked healthy and that I may had a wrong diagnosis. At one point I had given up using makeup just because I could not stand one more comment regarding my appearance. I wished to look sick, just to be in line with everyone else, to make it easier for others to believe me. Their disbelief and ignorance made me feel worse than I already was.

Whenever asked what was the most annoying symptom that I had to put up with, I said that it depended on the day I was having. That’s when I saw people raising an eyebrow in disbelief. Those who took an interest in finding out more about the details of my invisible illness know that I always tried not to burden them with my daily cocktail of pains and symptoms. Once they heard me describing how the burning felt like, they understood my misery.

The burning under my skin is by far one of the most disturbing symptoms. It never leaves me. It simply increases or decreases its intensity depending on my other symptoms. I also get shifting pain in the muscles, joints and bones, combined with electrical pulses, twitching prickly tingly muscles. All of these things happen within my body on a daily basis. Despite all this, I still manage to put a smile on my face and carry on with my day. Life goes on! I learnt how to deal with all these.

Neurological Chronic Lyme Disease (Neuroboreliosis) takes things to another level. Once the illness starts to affect your nervous system, you have to deal with a new ordeal of symptoms. Some of them are quite strange and bizarre, though not everyone gets to experience all of them in the same time. Some people have these sensations during a flare, a herx (Herxheimer reaction) while others have to deal with them on a daily basis. I count myself among the “lucky” ones who still have them.

When Borrelia Burgdorferi (the main culprit for Lyme) and Bartonella (co-infection) are hijacking your nervous system, you get to experience some unusual sensations, unknown before like:

crawling sensation – a creepy feeling that something is crawling around on or under your skin, throughout your body
freezing or burning sensation
buzzing or vibrating – better described as a TGV train passing through your body making each single cell vibrate
numbness
tingling (mostly in the limbs)- being pricked at once with thousands of needles. It does not feel anything like acupuncture. It is a totally different sensation.

How can I translate into words the burning sensation? Imagine that you went to the beach and got a severe sunburn which is making your body and skin ache. What do you do? You avoid touching your skin in order not to feel the pain or the tingling burning sensation. Now try to picture how it feels applying a frozen ice cube on your skin, all over that area that just got sunburnt. I am sure you just shrug your shoulders trying to visualize it. This is the best explanation I could come up with for the burning under my skin. Only difference is that it feels that way throughout the entire body. Some days it might shift from one area to another and it can change its intensity.

The craziest sensation is when you experience this burning on your head. Generally when you have neurological Lyme (Neuroborreliosis) , you get the “privilege” to feel it. That is a bit different. It feels like you have a slug or an army of ants moving slowly leaving an icy trail on your skull.

After reading about my daily ordeal, next time you meet someone touched by an invisible illness, please don’t tell him he looks good or healthy! Refrain yourself from saying something that would make him feel worse. Try to be creative. Make an effort and come up with something new!

RISK OF LYME DISEASE INCREASES WITHIN CANADA

The federal government allocated last year only $4 million for a research program meant to develop improved Lyme diagnosis, testing and treatment. Despite the fact that the Canadian health authorities have noted an increased number of cases of Lyme, the changes are not noticeable at all.

Nowadays Lyme disease seems to get more recognition than the previous years. (Not thanks to the government though!) It’s all due to the Lyme sufferers who turn to the media.

The pace is still incredibly slow. Yes, people hear more often about it, may learn a thing or two, but those who are directly concerned need more. They need reliable tests and access to proper care and treatment.

Within the last seven days, CTV covered the stories of two Lyme sufferers from Maritimes and Saskatoon. Sadly, their stories followed the same pattern. They had to get themselves diagnosed abroad and spend their lifetime savings on treatments which were not covered by the insurers.

It’s so frustrating to see that some many people can’t get proper help and they are being refused treatment. Why? For the simple reason that provincial governments still insist on saying that Lyme disease is rare within Canada and it is mostly contracted abroad.

Raising awareness about Lyme is crucial because it has turned into an epidemic on full swing.

Until when this controversial condition will be ignored by doctors? When will they learn and admit that Lyme is a global threat? Each year more and more cases of Lyme are being diagnosed all over the world, from North America to Australia.

The doctors need to be better educated on how to diagnose and recognize the signs and symptoms of this debilitating illness.

There is a dire warning saying that the tick population flourished due to the mild winter we had so far. Scientists claimed that we will be faced with an unseen outbreak of Lyme disease cases.

How many people and lives will be destroyed before a proper testing method is developed, not to mention a cure for Lyme disease?

FINDING THE SILVER LININGS OF LYME DISEASE

When you are fighting Chronic Lyme Disease, there is no doubt that your life has seen a dramatic change due to your illness, that your priorities changed. Facing the harsh reality of being diagnosed with a chronically illness unleashes feelings of denial, fear and grief. You feel robbed of your best years. Your sense of identity and purpose, your perceptions and perspectives about the world shift. You see life through a different lens.

It is an unrealistic expectation to keep an optimistic outlook while you are dealing with chronic pain, burning under the skin, flares, fighting anxiety or depression. If that was not challenging enough, things get even harder when you have to hear harmful or annoying remarks regarding your condition. These comments can have a detrimental impact on one’s health or remission, as they can trigger negative relapses.

Here’s a list of the most annoying (if not cruel) things I heard over the years:

“Lyme is not real, it’s a hoax!

“You’re exaggerating or faking your symptoms!”

“Your symptoms are psychosomatic.”

“There are no ticks within the city! You’re paranoid!”

“You don’t look sick enough!”

“You’re not depressed, you’re bored! Depression is only another form of being lazy and avoiding work!”

“You should stop your treatment! You’re cured!”

“You should stop taking antibiotics!”

“You should not read daily about Lyme!”

“You’re being used a Guinea pig by your doctor!”

“Your Lyme doctor treats your bank account, not you!”

“You don’t eat enough! Some sugar or a drink won’t kill you!”

“You need to go out more and make new friends!”

“You’re getting depressed due to self-isolation!”

“You need to connect with more Lymies!”

“You shouldn’t follow doctor’s orders so strictly!”

“You should meet and give Lyme related advice to a friend of a friend suspecting to have Lyme”

“You became arrogant since you turned into a Lymie.”

“You need to get busy and get out of the Lyme bubble!”

You can imagine that any of the above mentioned remarks or suggestions were not helpful. On the contrary! Though, to be honest, the last one had some truth into it, which I discovered only later on. As a matter of fact, it turned out to be the most valuable advice I ever got regarding my condition.

In order to cope with the pain and the burning I had to find ways of preventing my mind of processing the thought of pain. I developed new hobbies and focused on those. I started to draw and paint. I learnt whatever I could find available online about painting and drawing techniques. I experimented with different mediums and fell in love with the acrylic paints.

Thus I discovered that the creative process had the amazing ability of shutting down the sides of my brain responsible for registering the pain. In a few months, I trained myself to ignore the pain. Someone had told me that “pain was in the brain”. That remark did not made much sense the first time I heard it, it turned to be 100 % accurate only a few years later.

When that happened, not only I was almost pain free, but I also came up with some nice artwork. Thanks to that, I was able to turn a hobby in a small source of income. I got commissions from family members and friends, while the rest are being sold online.

As for the writing, spilling ink had always a therapeutical side, even before contracting Lyme disease. During my darkest hours of sickness and pain and not only, poetry was vital for me, as it helped me channel my emotions, clear my mind, voice my deepest fears. It has always been my main tool to express positive and negative experiences.

Whiteless Thoughts and Burden of love are two poetry collections that I wrote over the years and finally published last year, each one embarking the reader in a journey of a multitude of emotions. Being able to connect with my readers and getting some “Get well! “ notes from them, had a positive impact. I felt that I was on the good path, that my voice had found an audience, that my efforts of raising awareness about Lyme were being seen and heard. The most touching note I got from one of my readers was from a reader in the states, a Lyme warrior as well, who thanked me for voicing her cause. I never felt more humbled.

I guess I am one of the lucky persons who was able to find the silver linings of this health challenge. If I would not have got infected with Lyme, I would probably had never taken the same path I am now. I wouldn’t have become an author, a ghostwriter or a self-taught artist. I would have not pushed myself to the limit or done tabula rasa. I certainly wouldn’t have discovered my real self and be happy with who I am. I would have continued working in a corporation, without tapping into my creative side. It’s ironic how some of the most wonderful moments of our lives are made possible by an event that we wish it had never happened to us.

What are the positive things that you discovered within your DNA after being diagnosed with Lyme disease?

WHEN LYME MEETS MS – INSIGHTS OF A CHRONICALLY ILL COUPLE

In the Internet era, we often read or hear sad stories about how chronic illness destroys relationships. It is a painful topic that no one really wants to discuss about, because they will have face the ugly truth straight into the eyes. It takes guts to be candid about the difficulties of caring for a chronically ill spouse.

It also takes a lot of finesse, patience, empathy, compassion and commitment to deal with a chronically ill spouse or significant other. Sometimes one needs magician skills to run through the hoops of a moody, depressed partner. The staggering divorce rate among chronically ill people is crippling.

When both of partners share the burden of an illness, the risk of clashing is touching the roof. It is nearly impossible to prevent the relationship from failing, leaving alone keeping the flame alive. That’s for the regular folks, who have enough time to get bored of each other.

While faced with the cruel reality of a chronic illness, there is little space left for romance. The choices are limited, while its effects can be devastating. Usually when one’s needs (emotional, affectional, personal) are not met, words such as divorce or separation are often mentioned.

Finding the balance, the proper tools to navigate through the illness are key. Juggling with the personal needs and those of the spouse is challenging. It requires far more than love to persistently care for someone who is chronically ill. This dance between the moods, brain fog, physical pain, anxiety crises, episodes of depression, misdirected anger and resentment, poor communication is worth at least one Oscar.

The problems arising between the partners are never ending. Both need to have their needs met. Both are entitled to love, care and treatment. But who will get these first? Who will selflessly assume the caretaker role and burden himself with all that it entails? Which one of the two will be treated and cared first?

On what criteria they decide who gets to undergo treatment and for how long? Will they be strong enough to prevent self-pity and guilt crack the foundation of their relationship? What happens when both of the partners are in denial? Or when they relapse in the same time? What if there are children involved?

How can the two support themselves financially or handle the pressure of the daily struggle? This roller coaster ride ain’t getting easier! What about when financial reasons prevent both partners from obtaining the proper treatment and care? We all know that the cost of the Lyme treatment is not covered by the insurers. Thank God that the MS Society got this one covered!

These are only a few of the questions and concerns that the couple is faced with. There is no correct answer, since there is no cure! It’s one thing to be there for your chronically ill partner when you are healthy and a totally different story when you are sick as well.

Becoming a patient and a nurse in the same time is more difficult than you could imagine. In most of the cases, the partner presenting less symptoms, “the healthier one” decides to take on the caregiver role, to become the “helpmate”. Eventually it will wear him out, despite his noble intentions. He will burn out and realize that it is more than he bargained for. It will make him turn bitter, feel alone and drain all his energy, unless he sees some understanding or appreciation.

What it really takes to maintain a relationship going? It is a matter of how much you are willing to let go. Learning to enjoy small sporadic moments of joy and keep them embedded in your mind for the long rainy days. Learning to appreciate what you have instead of focusing of what you don’t or what you would have liked to have. Building a long lasting relationship requires a strong commitment and a combination of the following: love, care, determination, altruism, positive mindset, strong stomach, patience and nevertheless, hope.

The couple dynamics change when the two partners are sick. They surround themselves with the never ending whines and cries of their illness, they fall prey to fear and despair. They forget that life goes on despite all that. Somehow they neglect to acknowledge that they have the power to change something. They can change the attitude towards life and make life more enjoyable.

Here are some practical and valuable tips on how to keep your relationship going:

Celebrate small victories. If you are into the habit of keeping a symptoms track calendar, then it won’t be difficult for you to notice that a number of “X” weeks passed since you had a certain symptom. Remember life offers lots of lemons. All you have left is to enjoy the lemonade (Lyme & aid, in my case). That being said, put out the glasses and invite one more to the party. Engage your spouse in these small celebrations of life. You are not only sick patients, you are also humans with a living ticking heart!

Identify and eliminate stressors. Make a list of possible stressors and try eliminate them. If you notice a pattern repeating or a habit irritating your spouse, just ditch it! It is not worth another disagreement, your peace of mind is far more valuable.

Be thankful. Show gratitude. Find your own unique way of showing how you feel and how much you appreciate the efforts done by your partner. Try developing a new routine of writing thank you or funny notes and leave them in unexpected places around the house for your spouse to find. These little notes have the power to make one smile, laugh and turn a bad mood into a good one.

Be honest with each other. Keep in mind that being overprotective or leaving your partner in the dark can be easily misinterpreted, even if it is an act of love, done out of the fear of overburdening one’s mind or heart. In order to tackle certain topics such as financial issues, treatment options, or couple’s future, you need to be 100% honest.

Be open to suggestions. When your partner tells you something, or gives you feedback, don’t take it personally. Try to see how you can incorporate that into your daily practice/ routine.

Laugh more. Humour plays a key role in any relationship. It is well known that laughter helps improving the moods. “Till Lyme /MS do us part” does not sound anymore as a morbid joke. Dark jokes are welcomed. Humour has the ability to act as a stress hormone regulator, it enables the body to find a way to calm down. Improved oxygen consumption, slowed heart-rate, lowered heart pressure, and reduced stress are only a few of the benefits of humour.

Plan small. Whatever you are doing, plan small. Don’t overload your schedule trying to solve too many things within one day. Leave something for tomorrow. If you solve one thing per day, that is enough. Why getting yourself exhausted if it is not a life threatening situation? Don’t feel guilty if some days you can’t perform even that one task! Don’t be too harsh on yourself!

Exercise together. Performing a physical activity together, not only has the ability to make you achieve your fitness goal, but it can also improve the efficiency of your exercise. Working out together can increase your emotional bond and boost your romantic life.

Prepare/ plan meals together. Meal preparation can be a great way of spending time with your partner. Showing someone that you care does not mean you have to go out of your way and move mountains. No! It all consists in being kind, present and involved. Deciding what your weekly meals plan will look like can be practical and fun.

HOW DOES IT FEEL TO LIVE WITH AN INVISIBLE ILLNESS LIKE LYME DISEASE?

After more than a decade of being sick, I still get asked within my circle of friends or by extended family members how come I am not cured yet. Or why don’t I look sick like other Lyme patients they have seen in the news? Some insist on recommending me a either specialist or a home made remedy meant to bring me some relief, while others dive in pure oblivion and tell me Lyme is not real.

A few years back, I used to get annoyed by these comments. I was disturbed by the fact they were not able to see what I was going through. I blamed them for not taking a step further and digging deeper in what my Lyme world looked like. I felt the gap between us grew bigger and bigger day by day. I couldn’t relate to anything they were interested in, while they failed to understand that I had hit rock bottom, that my priorities had changed and my life had turned into a Lyme wonderland.

Now I know that I was equally responsible for this gap, as I chose to isolate myself and keep my story and suffering private for various reasons. As a result, I lost a lot of people on the way and I am partially guilty for not doing any follow-up. I was too tired dealing with the havoc caused by my illness to think of others. Or maybe Lyme got me less tolerant to nonsense. I don’t take it anymore. I am too busy digesting my Lyme cocktail to worry about what people think or want to hear.

During any social gathering that I attended, when asked “How are you? How are you feeling? ” I always replied “It depends on how much time you have.” At that point I was able to see the confusion on their faces.

Then I would continue with my explanation. For those who were pressed or simply asked me a polite question my answer was: “I am fine! Thanks for asking!”

To those who had a minute or two, I used to say that “there was room for doing better” and talk only about my dietary restrictions.

Only to those few who had five minutes to listen to me, I was giving a brief summary of my daily cocktail, explaining how the burning under skin felt like, giving a preview of day with my shifting pain, tremors, twitches, floaters, fatigue and concluding with the level of pain from a scale of 1 to 10.

In the rare occasion I was being given more than five minutes, I would dare to talk about my anxiety or how lonely or depressed I felt. In most of the cases I would stick with “I am fine!” just to avoid having my audience bored or having another polite conversation.

I learnt to tailor my answers according to the time I was offered. Let’s be realistic, who wants to listen to a sick person venting about his day?

One day I was not able to stick to my tailored answers and I simply blew off some steam. I could not pretend anymore I was not affected by others’ comments or reactions regarding my chronic illness.

Thus I decided to Lyme-educate everyone around me in order to raise awarenesses. I started to open up more about my symptoms, the anxiety and depression I was dealing with. For the first time in years, I was revealing a more detailed picture of how a regular day looked like for me. Their reactions varied and revealed a wide array of feelings: empathy, surprise, shock or boredom.

That was a valuable lesson which taught me that when no one played on my side, I had to put myself first. Therefore I changed. Lyme changed me. It bent me but didn’t break me down. I turned into a survivor and I don’t exaggerate when I say that. I got stronger! Think only at the level of pain I am constantly dealing with! On top of that, add the burning sensation which never leaves me and the chronic fatigue.

I doubt one would be able to cope with it and still be able of doing other things. I turned into a Lymie. I did not know there was a name for it. A lymie warrior and writer, as I found comfort in writing. When there was no one around showing any interest in what I had to say, I wrote it down. That spilled ink helped me get it out of my system. I dealt with feelings which I had no idea how to label or understand: anger, guilt, rebellion, despair, etc.

Soon the writing took a different direction, as I realized that my voice was being heard. I understood that it was within my power to make a change, to help others see what it meant to live with an invisible illness.

I was pleasantly surprised to see that my words brought comfort and helped others who were still struggling to come to terms with their illness. The isolating loneliness of a chronic illness takes a toll on you, more than you could imagine. Talking about it can only shorten the gap between the two sides.

What did you do to keep your sanity? What helped you move forward and empower yourself? What determined you to raise awareness? I’d love to hear your story!

WHAT DOES A LYME PATIENT WANT FOR CHRISTMAS?

Have you ever wondered what’s on the Christmas wish list of a person who is chronically ill? What could he possible ask Santa for? Would his wish list look similar to yours? Let me start by saying that the correct answer is not snow. Nor ice, nor a gift or a warm pair of socks! He doesn’t dream of any of these.

What a lyme sufferer really wants is to get well and leave behind this bad dream. Since getting a cure for Lyme is not a viable option (yet!), his second wish for Xmas is recognition. It may sound strange to you, since only an insider to this condition may know what that really means.

A lymie wants and needs recognition for his condition. It is his right to be treated with the same respect and dignity as any other human being who needs treatment and care. The last thing he needs is a stranger telling him his illness does not exist, that his symptoms are psychosomatic or to be treated as an attention seeker patient.

Unfortunately the lengthy process of diagnosing Lyme requires him to pass through various hoops. In order to get a proper diagnosis, he has to see an endless list of specialists, hoping that at least one of them would be Lyme literate.

A person infected with Lyme needs and deserves to be given and same type of care, as any cancer fighter, AIDS sufferer or any other type of autoimmune disease patients (MS, Lupus, RA, etc.) when he reveals his burden. Sadly, instead of empathy and compassion he faces raised eyebrows, closed doors, multiple misdiagnosis and even ridicule.

This scenario is not only happening within the doctor’s office but sometimes it occurs within his family as well, which makes it even harder to deal with. It’s no surprise that anxiety and depression come along with Lyme! It’s tough enough that he has to cope with all these symptoms caused by Lyme and the co-infections. Having to reassure others that he is not faking the symptoms is just too much!

I bet that it never crossed your mind that a Lyme sufferer has to worry about losing his disability income just because others believe he “doesn’t look sick” enough. Anyone dealing with an invisible illness, becomes an easy target to all sorts of acid comments or remarks which can have a negative outcome.

Therefore, a lyme patient is fed up of being asked if his condition is real or not. He’s tired of seeing so many doctors and not getting an answer to the questions “why his body is falling apart” or “why he is denied treatment?”

His illness is as real as you are! Just because your knowledge is limited, it does not mean you can label him or decide his faith. What you can do is learn, educate yourself in order to grow compassion and empathy towards those who got affected by chronic Lyme disease.

A lyme warrior is done dealing with politeness and rhetorical questions coming out of ignorance or oblivion. Why a Lyme warrior and not simply a patient? What sets him apart from the rest is his incredible strength to fight for his right to treatment, as he deals on a daily basis with the burning under the skin, chronic fatigue, joint pain, flares and so on…

Even on a good day, which rarely happens, a Lymie has to cope with pain. Life doesn’t stop just because he got sick. Life goes on and so does he. Kids need to be cared for, meals have to be cooked, chores have to be attended, homework has to be done, etc.

Ask yourself if you’d be able to cope with all these and still move on with your life, before you question or judge anyone affected by a chronic illness!

LYME MOVIES

GRACE NOTE is a recently released short movie (November 2017), based on true story, featuring Tracy Mulholland, Yael Grobglas, Jake Stormoen.

LYME ON THE RISE reveals the stories of two Lyme sufferers who have been misdiagnosed for years. The video manages to link their illness to the environmental changes we are currently experiencing.

UNDER OUR SKIN 1 (trailer) a 2008 documentary about Lyme Disease.

UNDER OUR SKIN 2 -EMERGENCE (trailer) a 2014 documentary raising more awareness about Lyme Disease.

UNDER OUR SKIN (Director`s cut)