Over an year ago I became a contributor to THE MIGHTY, meaning they accepted to publish on their website some of my Lyme related articles. They offered me the exposure I needed to voice my story and raise more awareness for Lyme disease.
Thanks to them, some of my articles were featured on Yahoo and Huffington Post. I couldn’t have reached a wider audience on my own. In addition, they added a direct link to my A-ZLYME.COM on each of my stories that they published. That little link they added, helped me increase the traffic to my website and have it rank higher on the Google search, which made it more accessible to other people.
What did I get from joining The Mighty community? More than I could have ever asked for. I got an incredible exposure for my Lyme disease awareness campaign and a supportive community that helped me move forward with my struggles. They made me see that I was not alone. I also got a lovely t-shirt that I proudly wear. It’s the one in the photo below.
On The Mighty’s platform, I connected with contributors and readers. Some of them were touched by different illnesses while others were simply looking for answers. What they had in common was the need for support. The Migthy offered just that: a digital health community that aimed to empower and connect people struggling with health challenges and disabilities.
Among the replies I got for my articles, I remember one from a Lyme-sufferer, a women from the states. She wrote to me, thanking me for voicing her cause and giving her hope for better days. Until that moment, I hadn’t fully grasped the impact my articles had on other Lyme sufferers, as I was more focused on preaching how to prevent Lyme or explaining others what it entailed to live with Lyme.
Her message made me understand that I needed it to open up and talk more about my personal experience with Lyme, which I did and continue to do. Otherwise how can one expect the rest of the world to know how it feels to live with an invisible illness, if he doesn’t talk about it? How can others know what he feels if he doesn’t share his struggle? Not everyone has the ability to read minds!
One year down the road and I still get asked why do I write for free about Lyme, or why do I refuse to put adds or monetize the website. My answer will always be the same: “Not everything is about the money!” When I created A-ZLYME I wanted it to address all possible questions related to Lyme, from A to Z, hence A-ZLYME.
It was designed to help those looking for information about Lyme disease and make their search easier by having all the data in one place. I know by experience it ain’t easy nor pleasant to spend long hours looking for information online while fighting brain fog and experiencing neurological symptoms of Lyme.
I might not have an answer for how to get rid of Lyme, but I learnt how to cope with it. I know that building mental strength helps the body perform at its peak which is key for living a happier life.
If you are struggling with a chronic illness or you have any health issues that you’d like to talk about with someone, you may want to have a look at THE MIGHTY and consider joining them.
Being a Lyme sufferer prevented me from getting back to working full-time and made me jump through a lot of hoops. In a nutshell, I was one of the lucky ones who managed to see the light at the end of the tunnel, meaning that I managed to find a way to live a normal life after becoming a Lymie.
I won’t lie to you, this was a long journey with ups and downs and many dead ends. It was a journey that I did all alone cause most of my friends vanished on the way. I moved on and I learnt to enjoy my solitude. I saw it as in investment in my own person, not a waste of time for social formalities.
Throughout this journey I gained a lot of knowledge and I feel I grew like a person. Maybe I finally grew up?! I learnt about suffering, compassion, sharing and love. And I now see the slight differences among all of their levels. I learnt how to talk to myself and more precisely how to listen to myself. The most important thing was that I finally understood that the power to heal laid in me.
Self-pity and fear of loosing control
At a certain point the self-pity took control and I was unable to see the way out of this sickness. I experienced lots of episodes of anger, self-pity and frustration.
Suffering from a mysterious illness and experiecing a wide array of strange symptoms are more than enough to make one question his sanity. Especially when no doctor can offer a medical explanation for it! Not to mention when they imply everything is not real!
When my health went down the hill to the point where I needed assistance to walk or take care of myself, these were the most frightening moments in my life. Loosing my independence hurt even more than the physical pain. The day I had to accept I was no longer independent and I needed help was a crucial point in my journey. I was lucky that one of my friends insisted on moving in with me in order to help me.
I couldn’t even hold a coffee mug in my hand, or walk straight for 10 minutes without sitting down or feeling exhausted. Then the sleepless nights started – the pain levels were so high that I was falling asleep only when my body was exhausted by pain.
Since my health continued to deteriorate and none of the specialists I had seen couldn’t help me, I decided to take this issue into my hands. I felt I had no time left for fighting doctors, an incredibly stupid and unfriendly medical system or an insurance company who was treating me just like a number, insinuating I was faking my symptoms.
Lyme Disease awareness
Lyme is a serious threat for everyone. It is a shame that so many people have to suffer just because the doctors are not properly trained to diagnose it. It is hard to believe that a tick bite can do so much damage!
My story echoes the voices of many other Lyme sufferers who underwent the same experience of getting infected with Borrelia burgdorferi, one of the smartest bacterias on Earth, capable of evading the host’s immune system and spread throughout the body wracking havoc.
Thanks to the Internet, more and more people learn about it and discover that it exists in their countries as well!
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.
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 PROBLEMSaren’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.
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
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 sensationis 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!
Most of the Lyme literate physicians recommend to Lyme suffers to change their eating habits and switch to a Paleo diet. What is a Paleo diet? You may have heard about it, or its benefits, but you still can’t grasp what it really means?
Basically, the Paleolithic diet is deficient of gluten, dairy and sugar, which are the main culprits for causing inflammation in the body, feeding the spirochetes or suppressing your immune system. Yeast is also something that you should avoid as well.
The Lyme diet is a mix of the Paleo and Candida diets, as the second focuses more on preventing the growth of yeast within the body.
WHAT IS THE BEST PART OF THIS LYME DIET?
The good news is that you don’t have to care about calories anymore and you can eat as much as you want! In order to maintain a good health and maintain your symptoms under control, it is important to have a healthy diet.
As the bacteria feeds on the sugar, it is crucial to avoid the consumption of sugar and all manufactured products made of it. Therefore, next time you stroll down the aisles of your grocery shop, before you put a product in your cart, please read its label.
While reading it, pay attention to the list of ingredients. If sugar is listed as one of the ingredients, you should NOT buy that product! Most of the people make the mistake of only reading the Nutrition facts, which breaks down ingredients into calories, fat, proteins, sodium, cholesterol.
WHAT SHOULD BE ON YOUR SHOPPING LIST?
Keep in mind that buying organic products reduces your exposure to pesticides or genetically modified vegetables and GMO. If possible, try to consume only free-range, grass fed, antibiotic and hormone free products.
Here is a list of the things that you are allowed to eat:
Eggs (omega-3 enriched cage free eggs)
Fowl: chicken, turkey
Fish, seafood, lobster
Meat: lamb, beef, pork, veal, bison
All vegetables excerpt corn and potatoes which have a high starch content. You could add sweet potato or yucca/yams on your list once you completed around four months on this diet. Consuming raw garlic, onions, cabbage (red and green), broccoli, turnips, kale and rutabagas has a great effect on the body, as these vegetables have the ability to inhibit the growth of Candida.
Fruits that are low in sugar: berries, kiwi, grapefruit, avocado, lemon, watermelon, cantaloupe.
Grains: rice (brown), quinoa, amaranth, whole wheat pasta and cereals with no sugar added, whole grain flour, Ry-Krisp, Ryvita, taco shells, tortillas. If you find yourself craving for bread, you can buy Ezekiel 4:9 bread or other types of yeast-free bread made out of sprouted grains.
Dairy: milk and plain yogurt. Though ideally would be to switch to organic almond milk or soya milk.
Nuts and seeds: almonds, sunflower seeds, walnuts, hazelnuts, pumpkin seeds.
Tea: organic green tea, herbal teas without “matte”, seltzer and home made fruit or vegetable juice
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 fromMaritimesandSaskatoon. 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?
In the Internet era, we often read or hear sad stories about howchronic 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.
Theproblems 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 somepractical 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.
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!
The lack of scientific progress regarding Lyme disease has created a lot of frustration within the Lyme community. Lyme patients are tired of being patronized, discounted and dismissed.
Thanks to the Tick Born Disease Working Group changes are going to be made. Within the two-day meeting of the HHS Federal Tick Borne Disease Working Group held on December 11th and 12th, on Washington D.C., vital questions were addressed.
Here’s a bullet point summary of the meeting:
DEVELOP ACCURATE DIAGNOSTIC TESTS
Develop tests capable of recognizing all stages of the infection and the co-infections
Discard the two tier testing approach
Educate the patient regarding the test’s reliability (false negativity)
Fund new research
Examine together medical anecdote, control studies, empirical observations
Leave aside egos, pride, intellectual rights, come together for a better cause.
FIND WAYS TO IMPROVE THE LIFE OF LYME PATIENTS
Forget the CDC definition of diagnosis
Recognize, treat Lyme and co-infections
Create a national education course for medical providers
Provide support to the doctors treating Lyme patients (no more penalties, disciplinary procedures, license suspension or other repercussions)
Allow physicians to treat the patients and their symptoms.
METHODS OF PREVENTION
Mass media prevention campaign
Tick awareness and prevention curriculum should be developped and implemented in all forms of schooling
Develop a safe and effective vaccine against all Borelia strains and co-infections
Create proper screening technique to avoid transmitting Babesia to the national blood supply for the public’s safety.