EXPLAIN MY PAIN: LYME

A journey of pain and suffering

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!

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!

 

 

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?

 

LIVING WITH LYME

Whenever someone asked me how was it to live with Lyme disease, I was never capable of fully explaining how that felt, without worrying for leaving something out or getting the audience bored.

No one can understand the amount of pain a Lyme sufferer must cope with on a daily basis, nor how much strength or effort it takes to go through the day, unless they go through the same thing.

Throughout the years, I learnt to cope with Lyme. Some days I win, some days I lose. It’s always a struggle. I chose to focus on what the positive aspects of my life and call myself lucky for so many reasons.

Today I stumbled upon Marisol Thomas’ speech at the Global Lyme Alliance Galla. I was moved by the way she described her daily struggle. I don’t think one could have done a better job! She really deserves that Global Lyme Alliance award!

Here’s a link to the Globally Lyme Alliance website.