I am label free. In other words, a generic version of myself.

  Rant alert.

 Should you choose to proceed and read this , you have been warned. lol. sigh.



I reject The Spoon Theory and any concept which has me focusing on what I can't do and  which leaves me feeling like a failure, because of my "limitations" (lack of spoons). And I can't with the concept of losing a spoon for tomorrow.
It doesn't give me any hope to know that tomorrow is going to suck because, I'm already "lacking" the usual number of spoons I need to get me through the day. WTF kind of negative thinking is that?

 Rather than "lose a spoon" for each task I'm unable to complete, I choose to instead give myself credit for all of the little things I can do. That is much more therapeutic for me.






 I acknowledge how ranty this may come across to some. Who am I kidding? It is ranty. This is how I'm feeling, and I own it.  In no way do I mean disrespect to the creator of The Spoon Theory or anyone who follows it.  I am cognizant  that many people do find the spoon theory beneficial, and kudos to them. Whatever works for each individual. The last thing I want is to come across as close minded or intolerant. That is not supportive of those of us who are chronically ill. And we need the support and understanding. So much. Especially from each other.

But I have to go with what works for me. And "The Spoon Theory" doesn't.


"I am myself and I am here." - Sartre

That is all.





*Update

This is now like the millionth edit (maybe I'm exaggerating a bit, yes I tend to do that. Shocking. I know.) Anyway. Yesterday I wrote from a place of frustration, and published it. Once it is out of mind, it is out of sight. I forget that people sometimes read the blog. On rare ocassion, I suppose. Haha. Anyway, upon reading the comment left below, I wondered if I'd been too negative. Which would be ironic, as I was complaining about how negative I found the Spoon Theory, and in doing so, I too was being negative. Here I go again, ranting about a rant. How meta. I really need to work on a filter. lol.   

Also, I worry that I may have been to simplistic or one-sided in how I presented the Spoon Theory? This is highly probable, because what do I know? I live in a perpetual state of confusion. lol



As I recently told someone when describing my blog,

" It is like I vomited my emotions all over the place."

Did I really just quote myself?! *facepalm*

Like everything in life, we take what we we need, what is useful. I don't completely reject everything about The Spoon Theory. I do like how it uses the metaphor as a way of helping those who are not ill understand a day in the life of a chronically ill individual. I also identify with the "But you don't look sick" concept, wherein the fact that I may "look" well doesn't negate the fact that I am sick and may be feeling it. Looks are deceiving. Especially for those of us living with "invisible illnesses."

I have many twitter friends who identify as "spoonies" and the last thing I'd want is to offend any of them. I am grateful for them and how supportive they've been. I reiterate, that for now, I really am not labeling myself, because I already carry my diagnoses, and that is more than enough, lol.

May 19 is World IBD Day

 

 

Today is #WorldIBDDay. Spread awareness about how 5 million people globally live w/ #Crohns Disease and/or  ulcerative colitis

As I wrote in  Letter to my 16 year old self  I have been living with Crohn's disease since I was 16 years old. It is my hope that we soon find a cure for both Crohn's and Ulcerative Colitis. Though today is "officially" World IBD Day, in MY world, it is EVERYday. May is recognized as Crohn's and Colitis Month. But for the 5 million of us, it is an everyday battle. I hope to continue to raise awareness, in the hopes that one day ,we will be able to eradicate these life-threatening, debilitating, invisible illnesses.

Until then,

*Resources:

 World IBD Day, led by patient organizations representing 36 countries on four continents, is officially celebrated on May 19.   World IBD Day

Crohn's and Colitis Foundation of America (in the United States)  CCFA

on twitter: @CCFA


And remember  ;)

Scars

 

 

It's been said that "Time heals all wounds."

 

To which I call

Bullshit.

 

Time does not heal all wounds.

Because some wounds don't heal.

They become scars

that become imprinted in our brains

in our soul.

 

Wounds of the psyche are so much worse

than those which are physical.

What can be seen eventually heals.

 

The wounds of the soul

that can't be seen

or explained

are worse.

 

 

People can't tell, by looking at you, that you are in pain

A visible scar shows some type of trauma happened somewhere on the body

 

 

but what about the scars that cut deeper

that cut through the layer of skin

down to the soul

that never heal

that can't be seen

but that are there with us

 

time will never heal those wounds

there is no salve which can be applied to them

to lessen their visibility

 

there may be medications which we are given

when that pain becomes so deep

that psychological intervention is needed

yet unless we take a pill which erases from our memory

the trauma which caused that wound

the scar will always be there

a tattoo on our soul

 

scars which can easily break open

wounds which can bleed at anytime

these scars which are so deeply embedded in our psyche

that resist treatment

scars which never fully heal

neither do we

 

therefore

to say that time heals all wounds is an utter lie

an illusion

something we tell ourselves and others

to give hope

a false hope

because the truth is we will always remember

and as long as we do

the pain will be felt

 

our task then becomes acknowledging the scars

and learning to live with it

learning to live with the pain

because it will never go away

no matter how much time has passed

To label or not to label? That is the question.

“What labels me, negates me.”
― Friedrich Nietzsche

I've currently got my health diagnoses listed in my twitter bio. I've included that I've got: Crohn's, Depression, Fibromyalgia. I did this to help others with similar conditions to find me/follow. It's a great way to connect and is how I met the numerous Crohnies as well as others who are chronically ill. And as I'm learning, twitter is all about connecting/networking. It's a great tool and I love the many people I've met, many of whom I follow for my varied interests (amongst which is health related, but it's a very interesting and eclectic group)

Anyway, lately I've been thinking about my twitter bio and whether or not to remove the labels which identify me as someone who is chronically ill. On the one hand, it is a large part of my focus and what drew me to twitter in the first place. On the other hand, it brings me down each time I look at my bio, as it is a constant reminder of my illnesses.

The twitter bio is the first thing people read when choosing whom to follow (at least, that's what I do, I read bios, cos I'm nosey like that, Ha!) anyway, I don't just want to be thought of as someone who carries SO many illnesses. It's a wonder more doctors and pharmaceuticals don't follow me. Haha.

Though I follow A LOT of people I try my best to interact as much as possible. It's a great way to bring myself out of my moods and also to distract myself from my pain.


To label or not to label? That is the question.

It's all about how I identify. I am chronically ill, but that doesn't define me. Hopefully by now, people who follow me have seen beyond that. The fact that they continue to follow, must say I'm not all that bad? lol

I don't know where I'm going with this post. Feels more like a ramble.

I have to think about this more in depth. To get to the bottom (NO pun intended, Ha!) of what is bothering me about the labels/bio. Hmm. I feel it's too limiting. And the bio is essentially a person's first impression of me. It's not until they (hopefully) interact with me that they can get a better idea of who I am. It's not like I spend the majority of my time tweeting about my illness, symptoms, etc. I *could* just leave the #ChronicallyAwesome hashtag, which encompasses the illness but what goes beyond it. Hmm. I'm so tempted to go and remove those labels. Something to ponder.


I came across the Nietzsche quote as I was writing this:

" What labels me, negates me."

This is exactly where I was going with the post. It perfectly encompasses how I'm feeling about labeling myself as someone who has SO many chronic illnesses. Because in doing so, I feel that the illnesses overtake me.  And in doing that, I take away from who I am (whomever that may be).



For now I'm just Kat. aka. "Alice". 
A girl who fell down the rabbit hole,
got lost in Wonderland.
 and is trying to make sense of things.

Chaos

 * painting by Lori Earley

       “You must have chaos within you

         to give birth to a dancing star.”

                        ― Friedrich Nietzsche

I took a break from writing because the tone felt too dark. Writing has been a very cathartic experience, yet it is uncovering wounds which will take time to heal.

Lately I have been feeling so melancholic. Some days I will wallow in the dark thoughts, yet I must remember and try to also look towards the light. I may be a pragmatist but I am also an optimist. While I acknowledge the therapeutic benefit of allowing myself to be vulnerable, I don't want to just focus on the darkness. 

I was inspired both by the painting and the quote, to help me focus on the light as well. I don't want to get so lost inside myself, that I get lost in the darkness. It's good for me to get in touch with , and work through, whatever inner turmoil I may be experiencing. I can identify and work through them. The ultimate understanding is the duality: in sorrow, pain, grief, there too shall be healing, happiness. I have to remind myself that how I'm feeling is only temporary.

that awkward phone call

That awkward phone call


that I just received
from a friend
I've had since the 5th grade.

Not said out right,
but clearly implied,
was,
" I miss you".

The irony,
that just hours earlier,
I wrote a piece
about being missed.

So the phone call
was very awkward
and uncomfortable.

 It ended awkwardly
with
 "let me know when you are receiving visitors".

Ouch! That really stung.

I was tense the whole time.

She brought up facebook
(on which I have gone M.I.A.
since summer of 2011!
at which point
I ran away to twitter)

You can run, but you can't hide.
 Life exists, and it is calling.

How much longer
can I stay
down this rabbit hole?
I like it down here,
in my world.
It is safe.


But my world
includes the people
whom I've excluded
pushed away
Hurt.

Because I am cognizant of how much I've hurt people.
And I feel so much guilt and shame over it.

I owe so many people apologies.

My departure was very sudden.

The onset of depression
crept over me
caught me unaware
so that it was a very
gradual process
that overtook me
in which I lost interest
in everything

Speaking to people
began to feel like a chore

So many questions
about how I was doing
every
single
day.

As if my pain
and my condition
miraculously improved
in the course of
24 hours

Then there was the energy
which I did not have
to reciprocate
and get involved
in their daily lives as well
to ask questions
to engage in conversations

I couldn't engage in life

engaging
was so difficult
that I withdrew

so many unanswered calls
texts
emails

so many people
with whom I lost touch
people
who care about me
and must be feeling
hurt
confused
shunned

when they did nothing wrong


It's not you, it's me
 it really is me.
Or my depression

Depression
that is like a
captor
that has me locked away
from reality
imprisoned

but eventually the captive
must be freed
if not by will
then by force

I have to fight back
I am fighting back
daily

I give myself credit for that
slowly I am coming out of it
that depression

I am not the person I was a year ago

the person who "ran away" from facebook
and the person I am now
are two completely separate individuals
and yet they aren't

Is this a lie I am telling myself?

Is it that I am someone different
or that I am denying
and repressing a part of myself
the part
that is too painful
for me to acknowledge

There is a world out there
that I do belong to
whether I choose to accept it or not

While it is safe to be
down the rabbit hole
I can't stay here forever
it is not therapeutic

I can't hide behind
my diagnoses

And I realize now
that it is
 exactly 
what I've been doing

Yes,
I have PTSD
but how will I heal
if I don't address my fears
my triggers

Because the people,
places
and things
which I am avoiding
are
the people
places
and
things
which I need in my life

Maybe this call was a reality check for me
a reminder that I am missed
because I am wanted
and because I want it too.

I want to rejoin the world
I have changed
each day I grow
I've met new people
but I can't erase my past

Most importantly
I am not alone
I belong to a community
to my family
my friends

Even though I get in my way
though I lock myself up
and don't allow anyone else in

I can't blame the depression
it is not the captor
rather
it is me

I need to work on
bringing myself out
of this cage
and destroying it
to prevent myself
from feeling tempted

because once I lock myself up
it is so tempting
to throw away the key
and never
let myself out

yet that is no way
to live 
and it is not what I want

#WegoHealth: "You think you know, but you have no idea..."

 

 

 

 

 

 

You think you know what it's like to live with Crohn's Disease; a chronic, invisible,  incurable illness, but you have no idea.

 

You think you know what it's like to miss me, but you have no idea what it's like for me to miss myself.

 

 

 

Those 3 dreaded words:

 

 "I miss you." 

 

They make me feel resentment and sadness.

Because as much as you may miss me,

I miss myself even more.

 

Most people would feel some kind of relief at being missed by their loved ones and friends. It signifies we are important to that person. That our absence is felt from their life. Because of the positive impact we left on them.

 

But what happens when you suddenly become chronically ill, and who you are, becomes who you were?

 

It's even more difficult when the chronic illness is also one which is invisible. Outward appearances are deceiving,

yet it is so difficult for so many who know me to grasp.

 

 

My outsides don't match my insides.

I may look the same

 but inside,

I'm a mess.

 

During this past year and a half I've been through a lot.

Much like a soldier who has gone to combat

 and returns a shell of him/herself,

I too feel the change in me.

I am no longer who I was.

 

 

I miss who I used to be.

 

It's horrible, because I know I can never go back.

I have a hard time looking at pictures of myself,

because I see a stranger.

It's almost as if I disassociate because,

I know it's me,

and at the same time,

she couldn't be more of a stranger.

 

 I grieve for her.

The Kat pre-surgery.

Whose life was about to change drastically.

Who was about to undergo

the most traumatic experience of her life.

 

A part of her died.

She was altered

fragmented

into

the before

and the after

 

So when you say you miss "me"

I feel sad and also afraid

because I don't want to disappoint you.

You may think I'm strong

brave

courageous

cheerful

 but inside I'm doing everything I can

to hold myself together

because I'm falling apart.

It's hard to pretend I'm ok

when I'm not.

 

So I end up avoiding friends and family.

Because it's too much work

to be pretend to be the Kat they know.

The one they are comfortable with.

The Kat who no longer  exists.

 

 I don't want to worry anyone

or let anyone down.

I don't want anyone's pity.

So I retreat into myself

and shut myself away.

 Because it's so much easier

than putting on a fake smile,

and say I'm ok.

I hate being fake.

It's not in my nature.

 

You think you know

what it's like

 to miss me,

as if I'm intentionally avoiding you.

 

When in reality,

I am protecting you

from seeing me fall apart,

from giving you the burden

of feeling you have to help

put me back together.

 

 

You think you know

what it's like

 to miss me,

 but you have no idea

Because as much as you may miss me,

I miss myself even more.

 

down the rabbit hole of depression

unraveled
broken
sad
depressed
anxious
empty
emotional


I feel myself falling...
down...
down ...
down...
spiraling
...out of control...


tumbling down
the rabbit hole
of
depression

It happened so suddenly
I was fine on Friday.
I was ok Saturday morning.
But sometime later,
the physical pain
also became
emotional pain.


I find myself in this spot.
and don't feel like talking to anyone.


I'm in my safe space
and I've withdrawn.
I feel so empty
sad,
melancholic,
tearful


depression isn't something that can be easily explained or described,
you've either experienced it or you haven't.
And if you haven't, then you can't understand
the agony,
the desperation,
the rawness.


I'm learning that I'm an extremist.
I'm either happy, or sad.
I need the in- between.
The normalcy.
I'd been experiencing a sense of contentment.
What changed?


It doesn't make sense that I should go from one end of the emotional spectrum to the other.
After all, don't most people exist in the "in -between"?
In the balance?


I'm not balanced.
I'm not whole.
I am not together.


I am fragile
I feel shattered
broken
lost
unraveled


I feel guilt and shame
So self-indulgent and self-centered
because I can't give to anyone else
I have nothing to give
I can't pretend I'm ok
I don't want to upset others
I don't want pity
I don't feel sorry for myself


I would much rather experience the physical pain
at least there is something I can do about it
I know how to treat it




But this emotional pain
is unbearable
it's got me in its grips
and won't let go


I can't distract myself
or ignore this pain
agony




I have this ability to get in touch with my pain
with my depression
I can go inside
and it scares me
what if the day comes when I'm unable to come out of it?




I've got a fresh wound that is bleeding
and I don't know how to stop the blood


I feel dead
unhealable


It's as if I've committed emotional suicide

So Broken

Can't find a better way to describe how I'm feeling right now.

This song does it perfectly.

Song: Björk - So Broken (Unreleased)




Lyrics:
So broken
In pieces
My heart is so broken
I'm puzzling


Here I go
Trying to run ahead of that
Heart break train
Thinking
It will never catch up with me


I'm so broken
heðan-biður-afte-care
So broken
heðan-biður-afte-care
heðan-biður


I'm trying to land
This aeroplane of ours gracefully
But it seems just destined to crash


I'm so broken
heðan-biður-afte-care
My heart is so broken
heðan-biður-afte-care
How can, how can
And I sense

All continuity
Has vanished away
At one step at a time now baby, baby

I'm so broken
Heðan-liður-afte-care
I'm-m-m-mmm...so broken
Heðan-biður-afte-care
Yeah, ha-ee, ha-ee, ha-mmm


I'm so
Completely unhealable, baby

I'm so broken
heðan-biður-afte-care
So broken
heðan-biður-afte-care
heðan-biður

#HAWMC Recap: It's not the End, It's only the Beginning

#HAWMC Recap HAWMC: It’s not the End, It’s Only the Beginning

I am sad to say goodbye to April because it’s been a great month. My participation with #HAWMC pushed me to go outside of my self. Pushed boundaries. Helped me expose myself. Feel a little bit more comfortable with who I am and who I am becoming. Gave me a tiny push that has set a change into motion. A process within myself that I feel is taking place. I’m learning to open up more, to be ok with showing who I am to others. It has also been a great platform to get me out into the chronically awesome and health bloggers community.


Writing has been such a great tool for me to cope with my health. I hadn’t kept a journal though it had been suggested to me by my therapist. Having prompts helped in that I had a place from which to start. I don’t have any particular “favorite” prompt. Some were a lot easier to write than others. For example, Day 1: Time Capsule, was hard as it was my first ever blog post. But once I got over that, my writing process was set in motion.


There were a few blog posts which were difficult to write, as they stirred emotions within me. But I never held back. I embraced the writing style which best suits me, which is “stream of consciousness”. I allowed myself to be vulnerable, open, honest. I wrote for myself, not thinking about who would be reading my blog.


Having said that, the most difficult blog post was the Third Person Post: Kat and Sophia. It took me all day to write, because I had to keep stopping. I was very emotional and I even had a panic attack. Lots of tears were shed as this piece was written. This only goes to show that my writing is a great way for me to process what I’ve been through. It has been a very cathartic experience for me.


Participating with HAWMC has taught me that I need to write. Because there is so much I’ve kept inside for far too long. By writing, not only will I start healing, but I will also grow. it is my hope that maybe my writing and my experience will help someone else, to help them see that they are not alone. That there is hope. But ultimately, I will write to help myself. First and foremost. And that is ok. Actually, it is more than ok. It is empowering.


I can’t write this without expressing my gratitude to Jules, for giving me SO much support. She set me up as a “blogger in residency” on her website, What the Jules. By doing this she made it possible for me to have a space on which to write, and she also mentored me. I had never blogged or participated in any type of project, such as HAWMC. When I agreed to participate, I had so many doubts about whether I would be able to do this! And I did! I wrote a blog daily. For a whole month! And it wasn’t as challenging as I thought it would be. Most importantly, I did something which intimidated me. I was afraid, yet I did it anyway. And I can now say that I faced that fear and I survived!


This marks the end of my participation with HAWMC but it is only the beginning for me. Now that I’ve faced my fear, I plan to continue writing.








” I write because there is a voice within me that will not be still.” - Sylvia Plath




I too have a voice within me that demands to be heard. We all have a voice, we all have our stories, and we deserve to be heard. I choose to use my experience as a tool to transform myself and grow. And each day I feel myself growing stronger and transforming into a chronically awesome individual who amongst other things, happens to have a chronic illness. I am discovering my gifts and talents. I have a chronic illness, but it does not have me. And that is a very powerful feeling.


@hipsteralice
Alice in Crohnsland
April Blogger In Residency for

http://www.whatthejules.com/april/353-hawmc-recap-hawmc-it-s-not-the-end-it-s-only-the-beginning