It was doing the dishes that did me in, that broke me and brought me to tears.
It had taken everything I had in me to get up, to go beyond my extreme fatigue, and attempt to prevent the spiralling chaos that life with chronic illness creates.
Within minutes of working at the sink, my hands had become swollen, hot, stiff and shaky.
The more I used them, the shakier and clumsier they became.
The effort to keep myself in an upright position was exhausting.
My lack of coordination and throbbing pain proved to be too much. I had to stop.
Hot tears filled my eyes.
I felt defeated, yet again.
Even with iron willpower, still, I was unable to complete a simple task.
How do you carry on when you live with an invisible disease that incapacitates you to such a degree? When you can’t prepare food to eat, you can’t shower, you can’t work?
When you are forced to live in a perpetual state of disorder, with dirty piles of dishes and clothes, disgusting floors, erratic work patterns, and daily uncertainty?
To say living this way is frustrating is an understatement.
It’s wretched and soul-crushing.
You lose your sense of self and question who you are.
I miss the person I used to be.
I used to be so many things…
I used to be I used to be a yoga instructor.
A long-distance cyclist.
I used to dance salsa, climb mountains, travel the world.
I used to make plans with friends.
I used to be so fit.
Do you know what it’s like to BE the person that loves to exercise?
That WANTS to do what most people can’t find motivation for and then have that taken away from them?
It feels so utterly unfair. So cruel. So wrong.
It is heart-breaking to not be able to do things you once loved; that were part and parcel of who you were.
“If I can no longer control my body or my life, if I cannot do the things I love, that make me ‘me’, then who am I?
As I look deeper into what ‘identity’ means I turn to the dictionary’s definition:
- who someone is.
- the qualities, beliefs, etc. that distinguish or identify a person or thing
So what does this mean?
Does it mean I am my attitudes? My roles and responsibilities?
What distinguishes me now that I can do so little?
There is so much I am not.
And what happens if I lose even more abilities with time?
Who will I be then?
What will I be?
I know that only from extreme pain, suffering and dissolution of what ‘is’ can anything new be born, so, my logical self says this must be a hidden gift.
One I cannot understand just yet.
One where I must change how I operate, how I view myself, surrender and simply be.
Death and rebirth.
Rebirth is impossible without the death.
But why must I die so many times?
As I splash cool water on my face I remind myself this won’t last forever.
I know I will feel better again.
Both physically and emotionally.
And yet, in this moment, knowing this does not diminish my grief.
I deal with it as I have learned to do these seven plus years of progressive illness: I acknowledge my reality and allow the emotions of grief to flow through me. I don’t try to push them away, nor pretend they don’t exist. I don’t try to be superhuman and rise above the need to cry.
I allow myself to be sad,
to feel the tremendous sense of loss,
and accept the reality that I may lose even more.
I also remind myself that, at the end of the day, the essence of who I am can never be taken away, and that seven years later I am still learning the balance between having a sense of identity without fully identifying with what I can do or how I am perceived.
There are many things I still am.
I am genuine, caring, and have the ability to laugh at myself.
I notice the subtleties that make the ordinary extraordinary.
I am inquisitive, open, and deeply curious about the world around me.
I am someone who dares to live greatly; who is courageous and takes risks.
I am a bird lover, nature lover, and honour the consciousness that exists within each living being.
I am a keen witness to the wonder and awe that surrounds me.
I work with what I have, with what’s left.
I attempt to thrive under all conditions.
I am someone who believes in themselves and knows that so long as I am on the planet, I am a force of nature, and nothing – illness or otherwise – can take that away from me.
Are you living with an illness and mourning the loss of your old self?
Are you highly sensitive and wondering how to operate in a world that isn’t?
Consider joining my waitlist – I’m creating a membership site for people just like you – complete with a private forum, courses and live trainings from a highly sensitive, introverted living with an autoimmune disease (that’s me!)