Tuesday 16 July 2019

Living with Fibromyalgia- The Things I don't Tell You!


The things I don’t tell you about living with a debilitating musculoskeletal widespread pain and chronic illness known as Fibromyalgia.   

First and foremost, you'll often find me looking seemingly well. It's a facade I've grown accustomed to, to the point where I've stopped outwardly explaining that I'm still not well.

There's a lot I keep to myself.

One reason is I don't want you to think, "Oh, here she goes again with her sob story," not that you would necessarily react that way, but it's a concern that crosses my mind.

Each time we meet, I choose not to disclose that I'm not well because I don't want to be the party's killjoy.

Here are some things I wish I could share:

Just because I appear well on the outside doesn't mean all is well inside. Most of the time, I'm grappling with my health. It's a constant struggle that never relents.

It requires ten times the daily effort to coax my brain into a semi-normal state. I have to push through and surpass the mental fog that clouds my thoughts before even contemplating stepping outside on most days.

Describing how it feels is a challenge in itself.


In the intricate dance of daily life, what you see is just the surface, the facade I've mastered – the art of appearing well when, in reality, my world is a constant struggle. There's so much I don't share, not because I don't trust you, but because I fear the label of the perpetual bearer of bad news.

Here are glimpses of the hidden battles:

Imagine waking up one day and realizing that some integral part of your brain's functionality is lost. The effortless activities we take for granted become monumental challenges. My new normal is a realm where even the simplest routines demand Herculean efforts.

I must will my mind to coax my body into action – waking up, walking to start the kettle, or taking a shower. Mundane tasks, once thoughtless, now require meticulous planning and strategic execution to overcome the exhaustion that accompanies them.

It's an internal struggle that defies description.

Physically, it feels like moving dead weight, especially when navigating stairs, which, to me, feels like scaling the Himalayas. My feet need time to awaken, pushing through the numbness as if I have no legs to hold me.

This is not a plea for pity but a window into the unspoken aspects of my life.

Before meeting you, my mind meticulously calculates the distance I'll have to traverse and the mental and physical toll it will exact. I'm constantly strategizing how to navigate our social interaction, contemplating its impact on my well-being, both physically and mentally.

But this is not about changing mindsets. I've become adept at self-development, honing resilience in the face of adversity. The challenge lies not in thinking about it but in the relentless, painful reminders from my body and mind that I'm unwell.

No matter how well-rested I may seem, the nights are restless, and sleep offers no sanctuary. It's a vicious cycle that can lead to isolation, an inability to fully participate in the world.

So much remains untold.

The hesitation stems not from a lack of desire but from the fear of revealing vulnerabilities that may prompt sympathy. I halt myself because, at times, my throat feels like it's on the brink of tears, and I don't want you to witness my vulnerability.

As we converse, I strive to absorb your words and mirror your enthusiasm, all while wrestling with the sense of alienation from a life I once knew. Simple words escape me, spelling becomes a challenge, and I navigate a world where the mundane is now a puzzle.

While we sit together, I'm juggling thoughts about our surroundings, anticipating the discomfort that might set in and calculating how long I can endure before succumbing to the need to move. The awkwardness of standing mid-conversation in a seated crowd becomes a concern, as I try not to draw attention to my physical struggles.

In these moments, my senses intensify, reacting acutely to noise and lighting. Sometimes, I leave earlier than anticipated, my heightened senses demanding solitude.

And then there's the joy – a different kind, accompanied by the bitter realization that every waking day begins with sickness. I've learned to slow down, sacrificing the fullness of life to find a more balanced existence. I live half a life, moderate and limited, to prevent the consequences of overexertion.

This is what I needed you to understand:

Appearances can be deceiving. While I may look the same, I'm no longer the person you used to know. There's much more to tell, and perhaps, with time, you'll come to know the intricacies of the life I now lead.