You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.

Try to comprehend that which you’ll never comprehend…

In the midst of a wonderful weekend at the Edinburgh Fringe I had two really inspiring experiences. Both of which fuelled in me a desire to share some writing that hasn’t seen the light in quite some time. On Sunday I saw Neil Holborn perform his stunning poetry. He is very open about his struggles with mental illness & includes his own experiences in much of his work. The power of his honesty & the emotional response he received to some of his pieces really struck me. He reminded me of the power of sharing the dark reality of mental illness. Later that day I was introduced to a friend of my boyfriend who also talked openly about his past mental health struggles. This led to a discussion of how helpful it is to talk about these issues; how more often than not other people will then share their own experiences of mental illness. We talked a little about how that realisation that mental illness is actually really common relieved so much shame. It reminded me how important it is to talk frankly about my experiences, so that those in the depths of illness can see that they are not alone. Equally important is to reach those who have never been touched by mental health problems. Letting people see that this can happen to anyone, that the pain is intense, debilitating & uncontrollable lifts stigma. I really believe that the way to fight ignorance is information. Not just statistics, but brutal insights into conditions often misunderstood. It is so much harder to dismiss mental illness when you have been confronted with it’s reality. 

With this in mind I decided to review work I produced in my darker days. For those unaware I have battled with PTSD, depression & self harm for most of my adult life. Although my mental health is much improved from the time of this piece, it remains a daily struggle. One is never cured. The best I can do is learn to live with what I cannot change & fight for what makes my life beautiful. I am profoundly grateful to no longer be actively self harming. I am also aware that urges still exist. It takes work to maintain my current life. I make a daily decision to keep fighting & I am far from alone. 

I know these words may be disturbing to some, but I ask you to read them anyway. I share this because I passionately believe that a deeper understanding defeats stigma & grows compassion. 

i had another little crisis

despite a transfusion in late december,

my haemoglobin had again dropped to 6.6

causing doctor’s to get jumpy

&

prompting talk of another transfusion.

this fuelled  a panic in me

i do not like having blood transfusions

i feel incredible guilt.

other people are more deserving of this blood

someone selflessly gave of themselves.

i will waste it

i know it will feel horrendous inside me

i do not want it.

i don’t really have the option of

saying

no

they will call in a psych consult

which could lead down a road

i can’t

even

think about

my first stupid reaction

is

i must cut

whilst the dr’s decide

i will blood let

i know it doesn’t make sense

to most

but

there is method in the madness

my hb is already low

i may as well be hung for sheep as a lamb

i will hate myself less for shedding my own blood

if i lose enough blood

do enough damage

i may feel sated for a while

with this in mind i set to work

after two disappointing nights

of

slicing

&

producing inadequate wounds

i got angry.

on the third day,

the gp called to say they had decided to go with an iron infusion the following week.

i considered myself free

to

paint the town RED

i felt it couldn’t be that bad

if i didn’t need a transfusion

i had still better fit in as much damage

before treatment

&

truthfully

after two pitiful nights

i needed it

so,

feeling enraged with myself

i set to work

i chose a spot on my slightly less scarred right forearm

i cut vertically

downwards

towards my wrist

everytime i reached a depth i could live with

i elongated the cut

&

started to work down into it again

i got into the most dangerous mindset

where

i just can’t resist

a little

bit

more

i ploughed through the layers of my flesh

fascinated

with what lay beneath

i watched three distinct fountains of blood

flow into one

sticky

hot

pool

i pulled the wound apart to make the blood spurt higher

i sawed through

some

tough,unknown inner material

and

thrilled

as the spray soared out

and hit my face

when i was finished

i watched

for

i don’t know how long

long enough to become dazed

i had created a gaping trench

the entire length of my foream

that continuosly filled with blood

and

spilled over, flooding the floor.

i could not stop the blood

nor, could i think straight

i wrapped a towel around my arm

put a huge jumper on top

and

took the bus.

yes,

the bus

to a&e

i trailed blood into reception

& collapsed in the triage room

i was so ashamed

dreaded trying to explain myself

lay in a cubicle

crying

i had done this many times before

but somehow

i couldn’t control my fear or self loathing.

i received 21 stitches

a transfusion

and

was hospitlised again for three days the following week with chest pains & breathing difficulty 

requiring

another

two units

&

suffering from severe pain

i spent those 3 days in & out of a morphine

induced altered reality

Junior dr’s were too scared to take blood from my arms

apparently experience is required

to find a vein in this network of scar tissue

the consultant was overly kind

fellow patients

stared & whispered

i lay there in

shame

pain

fear

all of which added up to

another attempt

to stop.

11 days

and counting……

20/03/2012

Blood on a mirror

Gonna find out who’s naughty or nice….

I have a confession to make. I open presents. I just can not wait. If you give me a pressie of any description early, I’ll have it opened seconds after you leave. This year I was determined to behave & save all my gifts for the big day. That was until a mystery package arrived & I did what any girl would do; tore it open immediately. I genuinely didn’t realise it was a a Xmas present, but nevertheless I have been naughty again. 

My darling friend Jenna has clearly been reading this blog as nestled inside that package was something I really, really wanted. 

  
This pendant was made for me. Plath is one of literary heroes. I adore her words & let’s face it, these words could have been written about me.  I haven’t taken it off since it arrived. 

Once again I am reminded that my people are the best people. Thank you, Jenna. Big love.