Pain, Pain & Me

Most “spoonies’ (a unifying nickname for the chronically ill), will understand me when i say that I began this blog, without any thought of time. I couldn’t afford to try and place a deadline on each posting.How can i make my body understand that i need to put the pain on pause and halt the nausea for just a few hours to write down, record and save an account of an experience that can only be described as “epic”. Unending and intense, with twists and turns, a journey, a journey overshadowed by frustration.

 

I had planned to post a blog i had pre-written. It was a response to the huge outpouring of support and love that followed my first posting. Considering i have yet to advertise this blog beyond a post or two on twitter, the number of people who made an effort to get in touch and say “hey, i feel that way too”, speaks volumes. 

 

Too many, are suffering in a dark pit and they cant find their way. Not for want of trying but because it’s just so.

 

I have written what i can only describe as a coarse poem. 

Its an expression, a rant and a vocalization of how i feel right now. Its a feeling I experience regularly in my internal battles with pain but i’ve recently been struggling more than usual and this has had its impact on pretty much everything. Including this blog.

 

Now i feel like i have built up the anticipation for this, 

this word journey through pain, 

Oh dear, 

 

Pain, pain & Me. 

March 2013.

A J Bukari  / Editor of Unseen Magazine 

 

PAIN, PAIN & ME.

 

The punishment for pain and his lies?

I prescribe, 

A penalty, undoubtedly intensely, painful.

Its sad, 

Its shameful, 

that he would be terrified, positively horrified

trying to conceptualize the materialization of his own state. 

Pain.

 

Somehow, i am able, i am slightly stable,

but able,

to organize and conceptualize a ploy.

Distract him,entrap him, pull him, drag him, into,

into,

a very narrow pit.

So dark that it,

 

gives the impression that determination and vocalization,

of his lies, will end his rein, release the pain, its painful, so shameful.

 

 

 

For a while, I try to visualize, to look beyond,

to hear a song, travel beyond, 

his hold, its so painful.

Away,

I go, up,up, no lows, i soar, i climb, i’m able. I’m able!

 

I look down and see a land of possibilities, 

houses that symbolize phases,

like mazes, my plans intertwine, they climb to the height.

where i’m able.

Still it’s painful.

 

The floor comes to meet me, i fall, i fall down.

Then,

then,I hit the ground with such force, i’m found dumb.

dumb, dumbfounded it’s painful.

 

He picks me up and then flicks me and drops me, 

he shakes me and drops me, so painful.

I try to resist, but i am his,

i’m his bitch, his own, i’m not able.

to shake him off, he’s strong,so strong,

I cant breathe, I cant leave,

I’m unstable.

 

For a moment, i’m fooled. i’m his, i am ruled. 

I cant move, i am owned, i’m not able.

Unstable.

I’m

Falling.

The ground, the walls, the ceilings, 

cant  breathe, 

 

i am choking.

 

i’m not able,unstable, 

it’s painful.

 

I scream.

It’s painful.

Pull me out!

Pull me OUT!

it’s too much, it’s too much.

Too painful.

 

All too painful.

 

 

 

 

ROCK, PAPER, SYRINGES

The harsh realities of trying to achieve with a chronic illness.

So the blog began…and it had to be paused.

Did i hit a proverbial rock in the form of a mental/writer’s block? Not at all, life decided to stop ‘art’ in its tracks.

 

Amidst the tinsel and christmas chaos, my body began to grumble more than usual and i had to face the possibility of another christmas in hospital. As usual i told myself that “i wont go!”, no matter what happens, I’ll pretend or rather hide the pain and just keep going. I’ll smile and make everyone believe all is well. (As well as it can be for me anyway.) 

 

Well ,you can imagine how long that lasted! Especially when my other half can look at me and deduce exactly where i am in terms of pain and suffering. Even my 3year old son has learnt to read when mummy is “hurting”, so the whole idea of ‘pretending’ was over before it started.

 

Somehow, i made it through the red and green haze of family, food and festivities but it was not without cost. 

Christmas day was a half day for me and boxing day began on the ropes; i woke up after 4pm!!! Still, i pushed forward. 

 

By December 27th my body was screaming at me.“Stop, i’ve had enough, i need help!”. I stopped, momentarily but the need to catch up on the ever growing pile of work, correspondence and general things to do, was far greater than my willingness to concede and let my body take control.

 

With chronic illness, it feels like your will and your body are constantly at odds with one another. You make plans, you tell yourself this is what you WILL do. No question about it, it will get done. 

 

As the hour looms (yes, things can change drastically in the space of a few hours), you start to take a mental inventory of all the pain, the symptoms and how well you are doing. Are you tired? Does it feel like you are going to deteriorate? Sometimes, its clear how your day is going to pan out. Lying flat on your back, sweating and shaking, its usually fair to say that it may be a few hours before you can even stand up let alone do anything but there are days where you are suprised, (and its very rarely a pleasant one!)

 

So. days go by in this cycle of “wanting to do” and being thwarted by your own body. To say its frustrating is beyond an understatement, but there are only so many words in the english language so it will have to suffice for now. 

 

The frustration of being physically stuck whilst your mind races and paces has to be a sickness in itself. To float from day to day barely aware of the time of the day at any given moment is not as much fun as the sloth may have you believe. The mound of  things“to do”  spills over and takes over your mind. 

The loving support who carries the burden of your illness with you, tries to reassure you that it is ok. “Just relax and let your body have the time it needs, you will get it done”. It is a comfort that someone else understands and can see the struggle you are having but you don’t want to wait! When there is no such thing as “getting better”, and only relatively good days, the idea of “giving your body time” sounds like a joke. 

 

So, you try to plough ahead and it happens.

 

 You crash! 

 

Your body folds and you no longer have any choice in the matter. Its at this point that my common sense usually comes back from holiday and i start to reason with myself, “if i go in (to the hospital) straight away, this crisis may not be too bad”. I think of all the things i have planned and decide that a few days in the hospital is better than months off stuck in hospital. Its always a gamble because you have no idea how your crisis will progress but there really isn’t much you can do at this stage. Pack your creature comforts and head for the A&E.

 

After two separate hospital admissions, each spanning a week, i return. The pain hasn’t stopped and everyday is still a physical lottery but at least i have some choices again.

For a little while, I stop at that moment when i take stock of where my body is on the scale of “coping” to “someone please knock me out!” and use what is left of my brain. If my body needs a time out, i still wrestle but now there is a compromise. Whilst the smell of hospital food is still fresh in my mind, i make a conscious effort to “take it easy”. I know i push my luck at times but i thrive on being busy, getting things done.Its who i am and having had so much taken away by illness, i intend to hold on to the good that is left. 

 

In an ideal world, i would find a healthy balance, but then again, i wouldn’t be chronically ill in an ideal world, so we’ll leave thoughts of the fantastic to books and film for now.The main thing is that even though it takes a fortnight to get what would have been a day’s work done, it gets done. I still manage to be constructive. 

 

As the magazine progresses towards its launch, i’m learning and growing too. 

 

Its hard existing between a rock and a hard place but just as high pressure produces precious stones, life’s pressures create interesting people or in the very least they create interesting short stories.

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From pain to paper

After years of hiding my illness, it feels liberating to be able to speak freely!
It’s a shame that there is no release from being constantly tired!

I’m sick and tired but today I made some progress! I’ve begun to share my story in “from pain to pen” and I’m hoping you will join the journey “from pain to print” as the magazine is brought to life!

Coming from a creative background, it made sense that writing would become my release as my condition deteriorated.What I didn’t anticipate is how much I could help others who live with chronic illness!

I’ve met so many people who struggle because people don’t understand what they can’t see or don’t know. A lot of people felt lost, some felt insignificant.

It’s like leading a double life, the one everyone sees and the Unseen lonely struggle!

We must be seen!

The Journey Begins : From Pain to print.

Inside the head of the editor in chief.  An Unseen Sufferer, determined to make a difference!

Get to know me,my team and the stories that have inspired us to create UNSEEN Magazine. 

This blog will provide information on our journey and struggles : from pain to print.

We hope to inspire you and hopefully make you laugh along the way. 

follow us on twitter : unseenmaguk   and please feel free to get in touch. Please ask any questions you may have and if you have a suggestion for the magazine, we want to hear from you!

Together, we will be seen!

UNSEEN MAGAZINE – Improving lives one page at a time!