The Invisible Scarlet Symbol of Fibromyalgia - What It Has Taught Me

If the invisible Scarlet Symbol, I wear now didn’t have a name or label on it; I would not have learnt the lessons I know now about myself and what it truly means to appreciate life for what it is.  

I have learnt regardless of any medical labels that I am a true warrior and survivor, through and through even through the most challenging times 

I can never put into the words what it feels like to this new existence in order for you to truly understand what it feel like. 

I have learnt that aside from being a warrior and a survivor that my body is fragile, more than I ever imagined before. I previously took it- my whole being and existence in this world for granted 

I never for one second, I had to stop and think of what was going on with my body, internally or externally. I woke up and embraced each day on auto pilot. On most days I would not even remember how I arrived at my final destination 

I have learnt that before I was not truly awake and very aware, as I am now of the immediacy and urgency of life and death. What it means to be physically healthy one day, to no longer having the same the same levels of abilities you had before. 

You see after surviving bereavement twice over of loved ones. It appears these particular lessons in my were not sufficient enough for me to awaken to myself and the reality of what death really meant 

Oh no, bereavement was not sufficient enough for the universe to enable me to learn what it meant to be afflicted by immediate and sudden loss. 

Instead the universe chose another dose to be inflicted upon me, in the form of what I call "a raging beast and an invisible scarlet symbol, scarred and scorched deeply into my nerves and muscles. To the point where at times I felt like oxygen was being depleted from my living cells or someone had physically thrown me into a scoring fire. 

There were times, I thought this was it, that I was going to die. Not only was I going to die, it was going to be a slow,  painful and tortuous death that would eat away at me in every sense including taking my soul.  

Lessons learnt were

Although I was a warrior and survivor ready in suited and booted in my body, this felt like fighting a beastly creature on fire that is a million times more vicious, cruel and unkind to the point it tested my physical and emotional well being. 

This beast I call it, had become my everyday waking nightmare. There were temporary moments when I believed it was gone (I had miraculously been healed). It was only a temporary reality,  it only lay dormant sometimes during my sleeping moments,  most idles moments to only attack in my waking moment to remind yet again it had not gone.  

It chose to steal my happy and happier times away slowly and to remind every second of the new limitations my body and mind had. Each time I awoke, pushed my limits a bit (which were my old normal and usual patterns in life) it would remind me that if I continued to push my body there would be consequences. 

It would snatch me back to reality just as soon as I got to the surreal world. It would remind me that not only was my happiness temporarily, that if I engaged as I usually did physically and mentally, my body would shutdown.  

I would pay for it for days or weeks to come, feeling crippled to even get up to partake in the daily and basic normal activities which we don't even take a second to think about. We just do them, like getting out of bed or grabbing a hot drink.   

Progressively I was fighting a losing battle. I didn’t have the fight of the Warrior Princess in me to fight, the hardest battle in my life. I went through the similar process of what people like me who experience bereavement go through (moments of denial, anger, guilt, sadness, loss etc...) 

Only this bereavement process was a process for me and only me. You see I was going through the stages of mourning me, whilst I was still alive.

I literally thought I was going to die. I believed my time of this earth was limited and numbered. Initially, I believed that my body was attacking itself. Well not completely, although it felt like that.  

In the beginning the beast attacked in the form of any recognizable ailment. My peers and colleagues acknowledged the external affliction which to them appeared as though I was suffering from a bad case of a flu

I was described as looking ghostly like (although I didn't notice the resemblance. I kindly accepted that something was wrong and that I must not be well. Only I knew it was not the flu although I could determine what was wrong. 

Little did they and I know that what initially felt to be feel like flu symptoms would never go away and would become my new normal daily life.

The older version of me was slowly dying and morphing into this new version of me (not a new model unfortunately). It would a new version that no longer would feel well. 

You see my scarlet letter that is scorched within my veins is mostly invisible. You would never know looking at me the new hell that I go through. Externally my appearance presents as "normal."

You will never ever be able to see it, feel it, know what it truly feels like to live this existence. Only unless you are part of my warrior tribe. 

What it feels like to wear this burden:

It feels like navigating a new planet for the first time without a campus. It can be very isolating journey, one filled with sleepless nights and days which feels as though a clown is going to literally jump out and tell you its all been a huge joke. You can now wake up and go back to living your normal life. 

Initially, you go though a process where you feel like you are still you. You wake up ready to embrace the morning to go for that long jog or hike. To only be reminded that although your mind wishes to embrace the day, its only a dream for in reality you are not physically able to. 

It feels like some twisted and cruel form of reality which at times you wish to no longer partake in. Only you realize there is no get away car and you have to accept this reality as your new normal

You feel all these unimaginable experiences which you can’t speak into existence for another non warrior to understand

It feels as though you have visited a world, which you can't really describe to someone else - so you remain silent as you go though this roller coaster of a self-discovering journey  

So you either remain silent or you speak up - when you choose to speak up, you want to scream to the top of your lungs 

To express this words - that no really, it is does not feel like the cold, headache or ache, pain that you have right now that will go away in a couple of days or week. For I once experienced those ailments and can relate. 

You wish to scream out that although I look well externally - that is not the actual reality of what is going on internally that at this precise moment;

I feel every fiber of my nerves throughout my body including my hand

I feel like I might be on fire (chronic pain) that is the reason I may not be able hug you, or hold a pen, or write for a long periods at a time. 

I feel a cold chill of the sudden that is now making my legs feels as though they are swollen and my muscles are tightening up

That I can't recall when I fully woke up feeling like I experienced restorative sleep

That although I am talking to you right now my brain is trying to process and remember some simple words to help me complete by sentence

Even though the book you are reading looks interesting, my brain will not be able to process all the information 

You wish to scream out that - no it’s about you. That in moments when I am not able to physically get up and mentally not able to push through the barrier of brain fog, to come to meet you it definitely is not about you 

So you choose to stop explaining- for after-all you look completely well externally, so it is a belief and temporary thing that has now gone away, for you look well.  

So I choose now choose to own this scorching and burning scarlet symbol - I choose to name it and call it for what it is and to own it. For if I chose to not own it or name, I would not be learning any new lessons in life. 

It would be like disowning a part of me, that is here for a reason.  I wouldn’t be writing this today, nor would I be able to relate to others who walk in my shoes 

Nor would I be able to connect with someone who is unfortunately about to embark of this journey for the first. To let you know that you are not alone  

So I shall not ignore and not speak its existence for doing so, just means I am ignoring the life lessons I am meant to learn as a result of being afflicted 

I wear the scarlet letter externally even if some choose to believe it’s not real. 

Even if some who wish to believe for my sake that I will be healed and I will be fine. 

Or because some believe this thing does not exist and its only an experience I am going through 

I choose to speak of its existence because without embracing pain there is no life journey to knowing. To becoming fully aware of what your body and mind requires, or needs to eventually make the journey a bit easier and a bit more livable. 

I choose to speak of its existence  even if it was given a label by medical professionals as this is what some general population understand it to be and know is as Fibromyalgia  

If I didn't speak of its existence and being afflicted by it I would not have met some amazing warriors and survivors, who have enabled me a space to speak up for us to be able to mutually connect on an authentic level. 

At this precise moment, as I type the internal beast that I have learnt to tame overtime is not as idle and doing its usual initial subtle magic of attempting to resurface

You see every key I press with my fingers, is a slow and gradual re-awakening on the nerves in my body. A form of electrical wiring at play subtitling reviving itself to remind me not to over indulge in this activity. Even if my mind believes it has the will and power to continue by body reminds me otherwires

The beast is dormant for I have chosen to make it dormant and feel as though I have conquered it, which this might be true. It is only a comforting lie that I have created in order to live a semi normal life 

For it to be dormant means I have had to sacrifice my freedom of expression (namely stress is non existent or very minimal in my life). I have had to sacrifice the spontaneous and adventurous me - who would wake up go for a run or walk miles on end without a single thought of anything in the world only to smell fresh sea air and feel revived and revitalized again 

That person, who had so much energy and woke up revitalized is no longer a part of me and I have come to terms with that. This is part of the bereavement process 

I know live with a person who is never revitalized or fully energized as before with the understanding that she has to operate in this world at a much slower snail like space. 

So in a sense the beast is still winning - so the battle continues 

I have learnt to leave a slower and more mindful lifestyle, more than I had imagined before - which was not necessarily healthier as I was living the "fast paced and hustle until you die lifestyle,"  always on the go to no woman’s end and a road leading nowhere at times. Well a road up the career path ladder, but to where exactly? 

The beast lives within my nerves and controls my every waking moment - to what feels like being a puppet  

Every step I take I am reminded that either by body as my legs begin to become stiff and lock with each step I attempt to take. Whether it be up the stairs or an incline, or flat surface take your pick it depends on day. Either way I start to morph into a frail like older version of me ( a 90 years old me, I imagine often) lethargic, lacking oxygen/proper circulation at times, to feeling breathless for no damn reason (pardon my french).

It is a daily fight again the force mightier than you. Bring on mother nature with lovely force,- you become like the weather woman. Your body becomes more in tune with changes of the weather than it used to be before whether you are awake or asleep. The rain, misty, cold days and dump days bring on the pain and a lovely dose of chronic pain. the heat has its own impact which so far seems similar to colder months, with the added pleasure of feeling weaker. 

You would think that I had been on the most wonderful Skye Diving and Mountain Climbing activities, or even horse ridding for hours on end for my body to feel this -  on the contrary nothing that fancy only a 5- 15 mins walk sometimes is all it takes. 

So you go through circular lifestyle: 

Awaking to insomnia or chronic fatigue, to the the stiffness of the body, to the nerves doing what they do best in either over firing or short circuiting like electricity to chronic pain and all the other cocktail of symptoms that come with this condition 

As I type this my nerves through the puppeteering of the beast remind me that my figures and hands are fragile and stiff. That soon enough I will definitely need to stop this activity and rest  

I will have to stop even if my mind thinks and believes I can continue for hours- my wrists, hands and fingers remind me of the painful truth. 

So this is where I end of

Only I had to stop for a minute, to remind myself due to moments of memory loss and limited concentration levels, about what I started off writing about. What was this topic about? 

You see I can type this long script, but will limited in my brain function to now to read every single word this is due to limited concentration levels. So I opt for audio information more nowadays 

I am now also limited with multi-tasking - must not be done at all. Especially if I want to remember that my kettle might be still be boiling, whilst I am attending to another activity 

I am a warrior and survivor for I never cry anymore for 

• what I have lost
• what I am not able to do anymore, like house chores in one go without feeling completely wiped out. Now I am reminded to only clean in small manageable stages throughout the week. That is not the end of the world if I cannot attend to something immediately (the perfectionist in me) 
• for what I am missing out on, or may be missing out on. I now live a different type of normal, which has become just as good for me 
• for my youth being taken away

I am a warrior and survivor even though I am afflicted, I will not let this condition define who I am as a person 

I am a warrior and survivor for now I truly see yet again and appreciate how fragile and precious life really is. I really see what I didn’t see before which I neglected to see due to the “busyness of life” 

So now I hope you understand why, “if the  scarlet symbol I wear now didn’t have a name or label on it I would not have learnt the lessons I know now about myself

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