chronic lyme disease Archives - A

6 Ways To Beat Holidays Blues

We need to keep in mind that not everyone shares the Holiday spirit and there are some people who find this period of the year extremely difficult. While most of us look forward to reunite with our loved ones, others try to isolate themselves and stay away from the holiday madness which acts as a trigger for their depression.

As a chronic illness sufferer, I know how challenging and daunting it can be to see others parading their good cheer and merriment while you’re all under the blue. It doesn’t make you a Grinch nor a Merkel, but it certainly gets on your nerves to see everyone around you enjoying a life of happiness that you have been deprived off.

This is when the Why me? question reappears and wreaks havoc through your mind, making it more tough to pull yourself together and move forward. You’ve done with it before and thought of having it sorted. Though, somehow it pops out again and puts you on the wrong path again.

Fortunately there are ways to chase away the holidays blue. All you need to do is to be willing to change something and step out from under the black clouds of doom. Here are some ideas that may help you improve your spirit and pack away the Grinch:

Avoid self-isolation as much as possible, join a gathering or a party! Try not to roll alone into your own misery. It will only make things worse. Attend that party at work or cocktail and engage in conversation with someone you never talked to before. You may find it easier to talk to someone new who is not aware of your condition. You can even enjoy having a proper conversation non-relevant to your illness. If you were trying to avoid feeling pity for or having shallow greetings, now it’s your chance to socialize!

Engage in conversation, be honest about how you feel. When asked about your health, be blunt and offer honest answers. This enables you to bring more awareness about your condition and allows you to see who are those really interested in what’s going on with you.
Shop online for your Xmas presents. If you know that crowds tend to get you overwhelmed, why not avoid them? There are plenty of websites where you can buy your gifts! Save your energy for some other activity that you would enjoy more!
Travel to a new destination, if you can afford it and if your health allows it. Go explore your surroundings as much as you can. Nothing beats the excitement of revelling in anonymity while being away from home. Don’t think of it as a way to escape reality, but as a reward, a ticket to pamper yourself.

Create new traditions. Sometimes it is much easier to try something new or step out of your comfort zone instead of doing the same old thing that doesn’t bring you much joy. Who says you need to have a fir tree or thousands of lights shimmering on your house? If you don’t feel like doing it, ditch it and don’t feel guilty about it! Step out of the patterns and celebrate the holidays on your own pace, following your own rules. Even Santa changes the rules once in a way!

Cultivate gratitude for all the positive aspects of your life. Although it might not seem there is not much left for you to be thankful for, you will be surprised to see how many other things you are taking for granted. Try to make a list of the things that are still going okay in your life and focus on those. Happiness doesn’t come in bulk, it’s all made out of little moments of joy that sprinkle our life here and there.

Wishing you all Happy Holidays and a wonderful time filled with love and peace!

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!

BORRELIA’S IMMUNE EVASION STRATEGY

Ixodes scapularis ticks are known to carry and transmit Borrelia Burgdorferi, resulting a multi-system illness affecting humans and animals as well.

How does a bacteria trick an innate immune system? It uses a mechanism to fight the hosts’ immune response.

Researchers from the University of Maryland (UMD) have discovered how Borrelia Burgdorferi can survive for months within the human body.

Dr. Utpal Pal and his team have done research on Lyme and Borrelia for over a decade at UMD. One of his latest studies revealed that Borrelia has an incredible ability of creating a protein that dissolves the host’s body immune response to the infection.

Dr. Pal’s theory says that the disease itself is caused by the host’s body reaction to Borrelia. According to him, Borrelia has a layered defence strategy and it can live within the human body for long periods of time.

Dr. Pal explains that Borrelia is actually producing a protein which has the ability to disable the host’s body immune response to the infection with the pathogen.

Borrelia is special because unlike other pathogens, it can re-appear weeks or even months after treatment.

In one of his previous studies, Dr. Pal produced the protein marker used to identify this bacterial infection in the body. In his latest research, Dr. Pal was able to isolate the protein created by Borrelia enabling it to put down the host’s first immune response. His study revealed that even in the absence of the protein, the bacteria was capable of surviving the treatment.

The findings of his study will have major implications on the treatment for chronic Lyme disease.

If you’d like to have a more in depth knowledge on this topic, read here.

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!