#HAWMC Day 3 Wordless Wednesday

Today’s Prompt:

• Post a picture that symbolizes your condition and your experiences.

 
Frida Kahlo, Without Hope, (1945)

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.

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 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

#HAWMC Day 23 Health Activist Choice #2 Personal Responsibility

#HAWMC Day 23 Health Activist Choice 2: Personal Responsibility

“If I get through this year, kicking my demon when it comes up, I’ll face the field of life, instead of running from it the minute it hurts.” - Sylvia Plath


At my doctor’s appointment, which took place last Friday, I learned that I have Fibromyalgia. While it is one more diagnosis to add to my trilogy (Crohn’s, Depression, and PTSD), it is a relief. I have an answer as to why I have been experiencing so much body aches/pain and fatigue. And having a diagnosis means treatment. I was started on Gabapentin, which I began taking on Friday and to date has brought me relief. It is so reassuring to now have an explanation for why I’ve been feeling so horrible these past few months. Of course, it also means one more obstacle to overcome.


My doctor and I had a long discussion about the courses of treatment to help me treat the Fibro. While it’s not a life threatening illness, it is a chronic illness, which can be triggered by stress. As we discussed my treatment plan, my very perceptive doctor, addressed my need to not only take personal responsibility, but to face things which I’ve been avoiding. I have been avoiding so much lately. I’ve grown too comfortable by staying home (due to my anxiety about going out), yet by not challenging myself, I won’t grow. By not addressing my fears, I am not giving myself the opportunity to overcome them. I am letting my fears control my life. And in that sense, I am creating a block for myself. All the while that this discussion with my doctor was taking place, I was feeling increasingly nervous and resistant. I even felt resentful towards my doctor: how dare she push me towards something which makes me feel unsafe and uncomfortable! Ha! The nerve of her suggesting something which would be of benefit to me! ;)


I have had all weekend to reflect on this. I must hold myself accountable for all the things I’ve been avoiding. I have been hindering my growth. It’s so easy for me to choose to stay home, rather than go out and increase my anxiety. My anxiety set in last Thursday evening in anticipation of my doctor & therapy appointments on Friday! Even though I was able to get out of the house and drive myself to my appointments and afterwards to the pharmacy, the anxiety was my companion and it was very high. When taking my blood pressure, the nurse remarked on high high my pulse was. My hands were shaking (in part as a response to the coffee I’d consumed) out of my anxiety. Yet, for all the anxiety I felt, I got out of the house, went to my appointments, drove around for a bit, came back home. The point is that no matter how anxious I felt, I took myself out of my comfort zone, and I survived! While the worst of anxiety makes me feel as if I’m going to die (not being melodramatic here, a panic attack is awful) I didn’t! I survived it! And it was nice to be outside of the house.


My doctor made a good point. I need to challenge myself more. To take myself out, even if it’s for a drive, start out small and gradually build up to something larger. The point is to get out. So that I may re-join society rather than avoid it. Because that is what I’ve been doing all this time: avoiding. Running from myself. From my friends. Hiding in fear. But that is no way to live. To be in a constant state of fear. Prior to my surgery I was a highly functional person. I miss that. I want to go back to that. I know I’ve got it in me. But the key is to take the first step towards getting back to that place. I refuse to let my “limitations” prevent me from living as full of a life as possible. I would be lying to myself if I said that my “limitations” are defined by my illnesses. That is not true. My only limitation is myself. I get in my own way. I am not holding myself accountable.


My goal for the week is holding myself accountable for things I’ve been avoiding and what I need to do.


Per my newest treatment plan for my Fibromyalgia, my doctor has suggested I look into: yoga/meditation/acupuncture classes. Per my therapist, my goal for the week is to follow up on a referral to a psychiatrist who specializes in pain. I am also to set up treatment with a therapist who specializes in Cognitive Behavioral Therapy.


It’s a reasonable goal as most of it consists of making phone calls. I have a particular clinic (where I feel safe & comfortable) that offers acupuncture. My goal is to go at least twice this week to receive treatment. It will be good for me as it will not only get me out of the house, but acupuncture always leaves me feeling very relaxed and pain free.


There is a lesson here. Much like the Sylvia Plath quote I’ve included, my lesson is that I must stop running from my fear and anxiety. Most importantly, I must stop running from myself. Only then will I be able to gain the strength, confidence and courage to live rather than hide. To let myself out of my cage and live life. It is time. I acknoweldge it is a process. I’ve got a long way to go. It won’t be easy. But I believe I’ve got it in me to overcome these obstacles.






@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/337-hawmc-day-23-health-activist-choice-2-personal-responsibility