When Borrelia Burgdorferi ( the bacteria responsible for chronic Lyme) enters the body it hijacks your biological system in ways that are beyond thinkable. The body you once knew so well becomes a system now speaking a different language. A language you have never heard or can understand. You go through the hell of the symptoms as well as the soul destroying realisation that you are losing yourself, you don't know who are or the body you once knew so well, what it has become.
You cling on to everything you can that defined you as a person, your body and so live in a state of denial.
Never knowing what really is going on, but choosing to ignore it as much as possible and hide any signs and clues of change.
Years of misdiagnosis can also help drive this denial and confused state you find yourself living within.
Here are a few things that take over the minds of anyone suffering with chronic disease.
*You lose your identity;
Once an outgoing, go lucky, happy and giggly girl to someone who isolates herself, suffers from a tremendous amount of sadness, becomes quiet, maybe even angry with an irritable mood.
It's a big change. You know it is and has happened. You hate this new you and you do all you can to cover up these unknown personality traits knowing you could lose friends, be seen as the 'sick, negative, buzz kill' of the group. We know nobody wants to be around people with those traits! You wouldn't want to be around it. So you cling on to trying to be the fun, talkative, smiley soul that everyone wants to see and be around. This is truly draining though and knowing how tiring this act is, hurts more because you can see this downward spiral that you don't understand nor do you know how to stop!
You question yourself and everything you stand for.
Little do you know that this progression is not your fault. The Borrelia attacks the brain, nervous system, heart & joints. Though once comfortable in the brain, and feeding on your cells, reproducing and changing your DNA you do become a different person because the messages and chemicals in your brain have been hijacked.
With brain fog a huge part of the illness I know that in social situtations I am now forced to leave early when I can feel brain fog taking a hold, sometimes I retreat from conversations as I no longer know what I am saying, if I am making sense or able to understand properly and I become quiet because I am confused.
The above is an example of the learning to adapt around the 'new' you that you are becoming and how to cope with this added stress.
Borrelia is extremely clever and is forever changing its make up to hide from the body's defence mechanisms. Meaning your health, mind and symptoms are always changing. There is no rest you are always having to learn how to deal with new symptoms, changes in body and mind.
The confusion leaves you all tangled up and feeling trapped.
Who the hell are you?!
For me.. I just try to focus on being a kind person. No disease can take that trait away from me nor can it take my motivation and drive away. So as long as I show kindness to all and have given each day and task my best shot that's all I can ask of myself.
And that's the true Sophie that is still there inside!
And you loved ones will understand and know this. They will know the real you and the when it's the Lyme talking.
It's not just difficult for the person to accept their identity crisis but it's hard for their loved ones to see the changes in their loved ones. Their friend, daughter, granddaughter etc they once knew over a short period becomes someone even they feel they don't know. As you are having to do, they simply have to accept this hurtful fact and work with the changes as best as possible.
*Lose of worth, purpose and life;
We all thrive off having a purpose whether that's within the home, in a caring respect, in your career and within your circle of loved ones. When you become unwell, you can't work, you struggle with house chores, you struggle socialising and being there for your loved ones etc. You begin to question, naturally what are you good for? What are you bringing to the table?
You aren't the fit, successful athlete you once were, you aren't the baker who made people happy and filled their stomachs with sweet treats, you aren't the organiser running around getting everyone straight, setting dates, throwing events and bringing everyone together.
You have become homebound and live a life of endless doctors, hospital appointments. Surviving not living as you desire to.
You feel a strain on your loved ones, you not only cause them financial strains but emotional strains. Your life isn't the only one being affected by your illness. This we never allow ourselves to forget and why we hold so much guilt. Our worth takes a massive hit.
We begin to feel out of place in a world we dreamed of conquering in our own way. With all our goals, dreams and desires.
This will be one of the main reasons why so many people suffering sadly take their lives.
I try to make myself see that I am still worthy and have a purpose. By seeing my new found knowledge, my new hobbies ( colouring, poetry and writing ), my blogs that I do to help you all, my books and my daily get up and go fight as my worth and purpose which is more than enough.
For many they really do struggle to find anything they deem worthy to give them a purpose.
( Read my 10 things that make us chronically ill worthy blog to help you find and channel your own worth ).
*What's Right And What's Wrong;
You lose many of your senses- taste, smell to name a few and abilities balance, muscle strength etc. You also begin losing that clear mind you once treasured. You become ever more indecisive, confused and numb.
You overthink! Your health and life is such a rollercoaster as it is that you are so worried about making the wrong decision that could make things worse. You can't bare for things to become any worse.
Yet you are faced with missing out or going and struggling, eating food and being ill or starving, moving on or staying right where you are, mint tea or green tea.
Silly or massive decisions they still cause immense levels of stress.
You overthink to try and make sure you get the most out of your decision, knowing that one wrong move might backfire, you may live to regret it and you can't get time back. When you become unwell you appreciate time a lot more as we never know what is around the corner.
You don't want to admit to yourself and others that you don't have a strong mind of an independent woman you inspire to have and be. Yet your indecisiveness also causes them stress as they wait what seems like an age for you to come to your conclusions. Often having to view the situation a number of times, go back and forth, taste or try things, cry and talk over things for hours, go around in circles for what should have been a yes or no decision ended up being a long, drawn out and stressful process.
You are embarrassed by the issues you have caused and still with a decision made your mind still overthinks and questions your choice!
When you have made a choice and then it doesn't live up to your expectations you kick yourself and become mad at yourself for your mistake. You can't just simply let it go!
It's an endless cycle.
Where is the clear, strong mind you once had? Now deciding on whether to have risotto or sweet potato fries causes you such stress that it can sometimes bring you to tears.
The chemicals within our mind have been hijacked, altered so greatly and continue to be that your mind is dealing with so much, that one decision on top is too much.
Tools to help you with this problem is to write out a pro's and con's list. Go with the side that brings the most benefit to you.
Ask loved ones for advice.
Think about what first comes to you mind - you gut normally has a good instinct.
*Loss of Compassion and Sympathy;
Showing sympathy, compassion and offering people the support they need are wonderful traits.
Lyme disease patients may not always show these traits as you expect them to or how they used to.
This is largely due to the extra toxins and inflammation within the body and particularly the brain. The part of the brain that gives off these loving emotions are under such strain from the Borrelia causing more inflammation that the individual becomes numb and losing the ability to care. They can often come off a rude, up front and selfish. It's been described as emotional paralysis as people feel so numb and unable to control their emotions. It is hard for them to grasp being able to always be the kind and loving person they prided themselves on being.
It's been put in the context of being like the affects of alcohol. When people drink they begin to express themselves in ways that 'isn't them' whether they are more open, more depressed, bouncing off the walls or even violent. They can't control what response they get from drinking, they aren't the influence that creates those feelings & reactions for themselves. This is the same for someone with Lyme. They have the Borrelia as their main influence that is controlling their reactions.
Which links back to loss of identity. No longer in control over the body or mind that you carry with you & defines you.
*Ability To Cope;
Every morning you wake up not knowing what you are really feeling and how you are going to cope with the day.
If the symptoms are new symptoms they can often leave you in a great destressed position of not knowing where to start to try and ease the pain or what's causing these symptoms.
If you are have a flare up then you become angered knowing today won't be a easy one and could affect the jobs, experiences and plans you have on that day.
Depending on these symptoms depends on your mood, outlook on life and situtation and overall ability to cope.
This again links to loss of identity, worth and the loss of ability to control your emotions. You can't judge how you will cope!
It's not like you know you are positive and upbeat, someone who can smile through everything!
Even if you used to be like that. Lyme may cause you to be irritated, sad and rude. A frame of mind you are simply unable to snap out of, irritating you further.
Borrelia Burgdorferi is an Oxbridge bacteria whom can hide acting as spies uncover for years and years, are fabulous mechanics able to change DNA, and the chemical within your cells, drill through organs, tissues and cells. Play tricks and games on your immune system sending it into confusion and attacking itself. Grow and adapt around any treatment used it can adapt to fight or hide from. Surprise parties are their favourites causing flare up's without any warning signs.
A Lymie holds a tremendous amount of guilt, grieve and pain.
The changes not only made to our outter shells but within our bodies have a lot to have to deal with along with the pain and the daily fight that is life.
It's an incredible challenge we find ourselves wrapped up in. One that is emotionally, mentally and physically draining and exhausting.
Please be kind and understanding towards us. If we cause you hurt, upset or fail to show kindness it's not on purpose. All we hope and want to show is kindness, love and support like you give us day in and day out.
I hope this blog explains the mean nature of Borrelia Burgdorferi and it's cruel effects on our minds. As a lot of the focus is on our symptoms or 'bodily' effects. Yet our minds are hijacked too and those effects are even more soul destroying at times. Therefore should not be overlooked.
Keep kindness and love in our hearts.
Let's pray for a positive week.