THE WORST 40 MINUTES IN MY WHOLE LIFE

Years back, while I was still struggling to get a diagnosis for my mysterious invisible illness, I reached the limit of my patience. I still remember this incident as if it took place yesterday. It was my first visit to a neurologist’s office. 

I really had high hopes for this appointment. After seeing many other specialists before him, all unable to offer me an explanation for my multitude of symptoms, I was hoping he would be the one that would have a breakthrough. I was kind of at the end of the line, facing a dead end.

To my surprise, this prestigious neurologist told me that I was perfectly healthy, that nothing was wrong with me and that I should return to work. I remember clearly  his annoyed face when he said to me: “Miss, everything is in your head! You are fine to go back to work!

In that second, I was shocked. I couldn’t tell exactly what was more painful: the physical pain I was enduring or the frustration accumulated within all those months of useless medical investigations. Or maybe it was the arrogance of this doctor who was insinuating I was a pretender.  

My mind was telling me, that at least he could have had the decency to buffer it, and tell me I may suffer of a psycho-somatic disease, meaning basically almost the same thing. I wasn’t aiming for compassion or empathy from him. All I wanted was an explanation for my symptoms. It’s hard to move on when you don’t know what you are fighting. 

But him, in his mind, he had taken a decision. He had labelled me as a lazy person trying to exploit the benefits offered by the workplace’s insurance company and avoiding to return to work. Within less than an hour, he turned me from a sufferer into a scammer.

Those 40 minutes spent in his cabinet seemed like hours. While I was there I experienced such mixed emotions. I felt powerless, angry, ashamed and miserable at so many levels.

  • Frustrated because the doctors couldn’t help me again. That I was tired to be treated like an interesting case and be passed over from one specialist to another.
  • Aching. I was physically aching. Running around from one hospital to another, waiting long hours until the actual consultation in the cold weather with temperatures way below zero were just some of the factors contributing to my chronic fatigue, exacerbating some of my Lyme symptoms.
  • Angst because I thought I was getting closer to my death since my whole body was in pain.
  • Ashamed because suddenly I had become someone who needed help. My pride dissolved into my anger.
  • Hurt because my genuine suffering was left unheard.
  • Angered because someone was thinking I was acting. Also for not being taken seriously and  not being treated with the respect and care I was deserving, that any human being actually deserves.
  • Scared because I did not know what was making me feel that way.
  • Worried because I did not know if whatever I had was curable or not.
  • Petrified by the idea I will loose my independence completely and I will end up in a wheel chair or even die.
  • Lonely because I was an emotional mess and my partner was also sick at the time. I spared him the details of my days, thinking that dumping all my problems in his hands will not help him recover from whatever he was fighting at the time. Therefore, I had only myself to share all of this colossal burden of thoughts.

 

What about you? What were you worst two minutes? Would you like to talk about it?

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!

 

 

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 askedHow 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!

 

 

 

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.

 

FALL IS HERE!

As autumn arrived earlier than expected, the delightful fall foliage brought in the foil-peeping tourists. During my morning hike, I noted that autumn leaf colour phenomenon has started. On my way back to the parking lot I passed by a lot of people. To my surprise, most of them were not properly equipped for hiking.

I felt compelled to tell them to watch out for ticks. Some of them were foreign tourists who had no idea what was a tick, or barely spoke English or French, while others thanked me politely brushed me off.

I did not feel offended and did not care if they might have considered me weird. I would have probably done the same thing ten years ago. Prevention is key. I have said it a million times and I will say it again, hoping it will make a difference, that it will avoid having someone else getting Lyme.

Although more and more people get bitten, and Lyme is now making the news, some think is not real. They consider it a hoax. They do not understand the risk that they expose themselves at by hiking in shorts and flip-flops.

A simple Google search is more than enough to show that there are cases of Lyme disease within Canada. Actually, you can hear it on TV. Today  even CTV Ontario News announced that a tick found in Sudbury has tested positive for Lyme disease. If that is not enough proof, I don’t know what will be.

Would you go hiking in shorts?