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.

#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

#HAWMC Day 28: The First Time I Walked Again

#HAWMC Day 28 The First Time I Walked Again

After being hospitalized for over 3 1/2 months, it was time for me to get out of bed and start walking again. Having been bed-ridden for so long, I’d not only lost muscle mass, but I’d lost the ability to walk. I could barely get up and move around my bed area. But part of treatment is making progress. I was in a skilled nursing facility and the goal was that I would be able to get moving again, by starting physical therapy. To prepare for physical therapy, part of the treatment plan included getting me up and out of bed. So that I would gradually build up stamina.


I remember the day, it was a Saturday. Two of my very good friends who had been very supportive of me during my hospital stay were visiting. The nurses suggested I go for a walk around the unit with them. I had a wheelchair and a walker. The plan was that I would walk as far as I could. I was very scared, but I felt comfortable with my friends. More comfortable with them than with my parents because with my friends I could let down my guard without fear of worrying them as I would with my parents.


Anyway the time came. My friends wanted to take me for a walk out of the unit down to the cafeteria, to grab coffee and chat. My room was at the very far end of the unit, which was on the opposite end of the entrance. I remember the fear and unsteadiness that came as I began taking steps. One friend walked next to me, and the other walked a few steps behind me, with the wheelchair, so that were I too feel unsteady, I could sit. I should add that one of my friends is a fellow Crohnie, and the other is a nurse. Needless to say, I was in good company. Safe. Anyway, I very slowly made my way down the hall. I was terrified. What if I fell? My legs felt very unsteady. I was pushing my walker and my friends were cheering me along. The entrance to the unit may as well have been in a different city, it felt I would never get there.


The nurses’ unit was the halfway point between my room and the entrance. It took all my strength, both physical and mental, to make it that far. By the time I’d reached the nurses’ station, I was out of breath and psychologically was near my breaking point. I was on the verge of a panic attack. I began to feel light-headed and dizzy. As I approached the nurses’ station, I made my way directly to the chairs that were in the area and sat down. My heart was racing quickly, I was shaking, my head felt light. The nurses congratulated me on having made it that far but inside I was an emotional wreck. It took all my strength to pretend I was fine and to act like the dizziness was the issue. I sipped water and chatted with my friends while seated in front of the nurses’ station. Then it was time to go back to my room.


I didn’t walk back. I was too weak and felt too unsteady. Of course, this raised everyone’s concern. It was agreed that it would be safest for me to be wheeled back to my room. I was very scared of falling. It’s natural to have that fear, as I wasn’t used to walking. It was as if I’d regressed to toddler hood and was once more learning how to walk.


That night, after my visitors had gone, I could no longer hold back the tears. Even though I’d taken some steps, I felt like a failure. I wondered if the day would ever come when I’d walk again. It was so frustrating to go from being so active, so ambulatory, to not even have the strength to walk down a hallway. I was afraid that I would never be able to resume my normal activity.


Eventually, I was able to walk further until I was able to ambulate with ease (and with the help of my walker). By the time of my discharge I was able to walk around with ease (with the aid of my walker). I remember going back a week later to visit my roommate. I will never forget the look of surprise and pleasure on the nurses’ face when they saw me walk in. I wasn’t using my walker anymore. And I was fine. It was as if I’d never needed a walker in the first place. It was a shared happy moment for all of us.




@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

#HAWMC Day 27: 5 Challenges & 5 Small Victories

#HAWMC Day 27: 5 Challenges & 5 Small Victories

I am not a good list maker. Especially when it comes to listing “challenges” and “victories”! I understand the therapeutic value of this exercise. It is so much easier for me to list my weakness than my strengths (because I don’t want to feel like I’m bragging!). Yet at the same time, I’m struggling with listing “challenges” because it makes me feel like I am complaining. I am not a whiner, I don’t give myself pity parties. I don’t like to focus on the negative. I approach my health “challenges” by taking them in stride.


With that in mind, I am focusing my “Top 5 Challenges & Small Victories ” on health (both physical and mental) as that is what I’ve written about in my blog.


5 Challenges


1. Living with Chronic Illnesses


a.) Crohn’s, fibromyalgia, depression and ptsd (See how indecisive I am? I couldn’t just pick one illness/disease! Ha!)


b.) taking medications: side effects contribute to my fatigue/make me so sleepy and feel like a zombie


2. PTSD: causes me to avoid: people, places and things which are triggers.


3. Fibro: constant pain/fatigue


4. Depression: and with it the tendency to shut people out and withdraw.


5. Not being able to go to work due to my health condition (I know this is only temporary)


5 Victories


1. Allowing myself to be vulnerable. (this one is a crossover as it is both a challenge *and* a victory)


2. Starting therapy: addressing my ptsd & depression. Getting help. Admitting that I can’t do this alone.


3. Joining Twitter (yes, this IS a victory… and an addiction! Ha!) : feeling comfortable speaking with others about my health conditions in such an open forum.


4. HAWMC: blogging daily is a great accomplishment NOT a small victory, rather a great one.


5. The discovery that I am Chronically Awesome: that while I may experience illnesses, there is more to me than that.


Tell us what surprised you about these items, what you expected (or didn’t expect), what excites you.


What surprised me is the ease with which I am stepping outside of my comfort zone, by opening up to others, via twitter and my blog.


What I expected and what happened, was that it was very easy to list my challenges, yet difficult to list victories. I wasn’t surprised to find that I struggle with letting people in; due to my unwillingness to be vulnerable. Another reason is that I don’t want to be a burden or a “Debbie Downer”.


What excites (hmm. I don’t know if that’s the right word? Maybe a better term is ” What gives me hope” or “What motivates me” ) about this is knowing that what I’ve listed as “challenges” are obstacles which I can overcome.






@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

#HAWMC Day 24: Health Mascot

#HAWMC Day 24: Health Mascot: Hipster Alice

For today’s prompt – give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them.


Bonus points if you provide a visual!


Rather than choose a mascot for a specific health focus, I’ve chosen to give myself a mascot, which will represent my blog. This makes much more sense, as my blog focuses on more than one health concern: 

Crohn’s/Fibromyagia/Depression/PTSD

and also, because it is a more holistic approach. I’d like to be seen as more than the disease/illnesses I have.






I have chosen the theme of Alice in Wonderland but with a few twists. I have a tumblr blog (which I need to update) which I titled “Alice in Crohnsland”. Thus, it makes sense
that my Health Mascot would be Alice. I also have a twitter account: @hipsteralice.

Therefore, as a way to unify my tumblr, twitter account, and this blog, I have chosen to utilize the picture from my twitter: Hipster Alice. In this way it is much more consistent, as I am recognized on twitter by both the Hipster Alice name and picture.


Do you think the creation of a mascot will enhance your blog and your writing? Did it help you to visualize your role as a Health Activist better?

It will enhance my blog in that it will make it recognizable to people who already know me and follow me on twitter.

@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/338-hawmc-day-24-health-mascot-hipster-alice