Six Months

Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.

I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.

I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.

You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.

If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.

I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?

It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.

That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.

You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.

Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.

What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.

The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.

I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.

I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.

Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.

It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.

If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.

First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.

I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.

Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.

I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.

Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.

So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.

Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.

I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.

That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.

My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.

If you’re reading this and you feel hopeless, know that you are not alone and there is hope.

Advertisements

More than we fear


If I couldn’t

Be relied upon

I would still

Try to stand strong

And if I fell

And those who are my kith and kin

Let me fall, rudderless

I believe I would still

Try to stand once more

This attending effort was not

Born to me

I was a slothful child

Idolent in summertime, slow to come home

Engrossed in the token more than press of life

Missing meaning within magpie’s shiny locket

I may blame a lack of moral structure

But it was ever my way to remain hollow, we are vessels of sound

The rod or the wild, we choose in our forming

I chose the willow path overgrown by neglect

You, it was you, years hence

Bending with an acrobats supple spine

Taught me purpose and value from your own pain

Late and much too past, still never entirely lost

On even the laziest soul, truth can take hold

I thought I knew truth

Until I learned to listen truly

I thought I knew loyalty

Until I witnessed real mercy

It was as if I had ever not, known a thing

And wiped clear of experience

Began anew, shivering in dawn without wrapping

I couldn’t see then, the other shore 

Or how

Waves are measured in metric pulse, known to moon 

I walked among prophets blind

And only saw my own, sorry reflection

I bled and believed myself insightful

When the blood was void of rust

You see, it takes rhat meterlurgic alchemy

To disipher ourselves and then, once seeing, cross that wasteland

I believed my intuition when I only saw shadows

No crucible of real direction I walked without legs, on the back of dry twigs

Until, woven with deception, snap, the pasture denied me 

Even the position of desicated scarecrow

For I was just an approximate, empty inside, tredding fallow

Without hunger or thirst, nourishment naught

Nobody to stand as sign post

If I couldn’t

Get up from my knees, though they were made of lead

And discover the dream, still in embryonic state 

That has been here all along, put away, almost forgotten

For we are, born to dream

Not to linger in collapse but

Leap graceful without weight

The chains imposed, released to fall

Cleanly from their imprisonment

Shackles are no natural state, prisoners of ourselves

Each of us has, a measurement of myth

Wings to fly and imagine if

We let go of shame and doubt

Those habits cast around us in woe

Lift, lift, oh that we could

Find the fabric beneath the world

And swim in unisen to its music

If I couldn’t 

I would not still be here

Trying to prove we are always

More than we fear

Of needing

When the capture

is weakened

when neglect owns

no name

but like paint

faded by days 

needful of coat

then you listen closer

not to temptation 

and her guest

but the soft rummage 

of needing

notice my new dress

or the turn of my hands

as I clean and wash and pour

these invisible chores

chalked over by repetition

the line between your eyes

a quickened thunder

didn’t you buy more nutella?

this is not ironed through 

holding an outline of wrinkle 

oh so true

when love is new 

we inhabit scarcely

that fantastic vaunt 

slowly to fall

in little unmendable ways

like gathering wool

rubbed by barb

a trick of light

words shared like jewels in dark

oh the power you manifest

in one observation

worth all a stranger distorted

for it is not in the arms of replacement succor is found

but the sure tred through years holding our hems above us

strung in purposed knots, hand over hand, over hand

rubbed against stone til transparent

*I wrote this after hearing a few sad stories of people in unhappy relationships, and my wondering why they were unhappy together and why they couldn’t last and be happy together and how sad a world filled with people who no longer want to be together anymore is. I may be a dreamer but I’m not the only one who believes we hold the answer.*

Superficial

16708220_10208952052418165_5456016437649641167_nSkim the stone on the surface

watch it butt against reflecting light

until falling through surface

out of sight it drops

to a darkness

or a peace

depending upon your vantage point

I for one would welcome

a life spent below, than above

listening to the mocking calls of unseasonal green parrots

filling trees with their envy

they make everything brighter it is true

yet something about the jarring

competitive nature of their plumage

strikes me as less sincere than

the drab and disliked pigeon with

old face and white circles around

his rumey blinking eyes

who can always be relied upon

to lose a toe in Winter

I think of how often I have watched

something curl to the side of a street

and wait to die

how a part of me felt helpless

inhabiting stages where stories

rent through armor and pierced

my conscience

after the third pigeon in a box

tucked beneath my office shoes

my boss told me

look, this is enough

he preferred I collected his shirts from the dry cleaner

bagfuls of shopping for his wife

my perk was

one day I could grow up to be like him

ignore dying birds in the street

driving silver BMW to my Thursday mistress

whilst another slave worked after-hours

filing life upward like blind builb

it came to me then, ungluing my eyelids

leaving behind one word

WRONG

written in magic marker on his desk

I took the cooing box I’d hidden

and the pigeon and I went home

to a cold flat with no furniture

where he proceeded to try not to die

and I watched understanding very well

the hue of his life

for I am a stone who sank before

she saw the sun and only the moon knows

the way to lift me up