The art of forgiveness

I do not forgive easily

I ache from deep inside myself

Gutteral acid seeping from my stomach and chest

Forcing hard breath from my soul

As if my heart had been torn from its strings
And held there in a cold steel cage, beating only because it has no other choice

I breath

Flinching as punched hard in the gut

The pain.  The betrayal.  The harm and broken shattered soul tears.

Blood still pumps, hard, red, relentless.

Sweet dark numbness; too far from reach to even rest a moments thought on

But that moment’s crescendo explodes into deafening squeals of anguish erupting from every crevice of my being

my well of love overflowing into a waterfall of sadness and river of crystal clear emotions ebbing into the universe

Dispersing into everything 

The monotony

Routine

Laughter

Fear

Guilt 

Anger

Then love, pure love

And sleep

Seconds, hours, days and then years

My mind wandering with the twists and turns of the present 

Thrive in the present

And when that time comes

I forgive you

Peace 

Clarity

Purity 

Life
By Lis December 2015 

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Intro to my one woman show… Exclusive!

Well I’m in so much pain I can’t begin to try and sleep.

I’ve always dreamed of doing a one woman show.  I love to act, and write, I’m far better at monologue that dialogue for some reason.   

 I love you to read this and let me know what you think.
Lissy Lis’s one woman show… The beginning…
I’m feeling torn. Torn between trying to get a good nights sleep so I don’t feel shitty in the morning, and staying awake as long as I can to put off the agony of the morning alarm ringing in my ears. It’s 2am and I’ve decided that a good nights sleep is vastly underrated. Morning sucks harder than a no hands spaghetti eating contest.  

Have you ever had that dream? The one where you are rushing to get to work? I get that when I’m subconsciously panicked about oversleeping. It’s the one where I’m trying to leave the flat, packing my bag anxiously with work essentials, but those essential items are strewn across the room, I’m frantically hunting a hairbrush, my phone, keys, sandwiches, diary, eyeliner, my cats bowl, a cheese grater, until I realise I’m now 3 hours late. God knows how I did it but I’m out of my house, I’m rushing down the road when I come to the stark, horrific realisation I haven’t brushed my hair at all. I have sex hair, wild, knotty and matted at the back. I hunt through my bag relentlessly for that brush but I can’t find it. 

 I feel somewhat narked that I missed the part of the dream when I got my scruffy hair do, but the lucidity never lasts. 

 Oh god. My shoes! Where are my shoes? I can’t go to work barefoot can I? So I decide to call in sick. I’m trying to type numbers into my phone but I press a 0 and then a 6 appears on the screen, I delete the 6 and press 0, then a 9, 99, no a 0, 999 appears and the police automated system is literally telling me I have prank called them. No! I didn’t prank you my phone malfunctioned, oh god what if they notice my shoes, my hair! Oh god, run!
But I can’t run can I? I’m trying to run through glue, thick viscous, invisible glue. The harder I try the harder it is to move at all, I’m doomed. I’m surely doomed. I get on my knees and I’m crawling like a shoeless hobo with hooker hair down the high street, desperately clutching at the kerb, pulling myself towards the road I urgently need to cross when sirens and blue flashing lights surround me, whirring knee-knorrs getting louder and louder and louder until.  
Hang on. I’m in bed. I roll over and press snooze.
Snooze really is an amazing thing isn’t it? It amazes me how many times I can press it without even realising 2 hours have gone by. 
Well that’s it.  What do you think?  Do you have any tips? What would keep you entertained for a whole show?  Would you like me to post a performance video?

Twisted

Every scene that haunts me

Stays inside my head

Lurks behind the curtains

Impending sense of dread

It’s lingering behind me

It’s watching whilst I sleep

It’s calling out my name

But when I turn

There’s just a heap, of black and tattered remnants

Laying strewn across the ground

Motionless and sinister 

I lost that won’t be found

Amongst the flowers

There’s a body

Laying prone so frail and cold

A scream that rings inside my heart

A story never told

dark trauma it consumes me

drips into my mouth

fills me up and drains my soul

Tears me up and spits me out.

A cymbalta victim.

This week I’m mostly being a ‘normal’ person…

…. Whatever that is?! It’s certainly using up my valuable spoonage.

  
I just realised I can blog on my phone; I know, get with the 21st century.

I’m procrastinating because I’m literally the best at it.

Today I went to my new job

I’m thrilled to have found a new job, the people seem so lovely and the job itself totally doable.  It’s mainly coordinating home carers from a desk base, it’s very straightforward and not as pressurised as my previous stressful, traveling all over the county management role.  That role I’m sure contributed to two serious relapses, seeing me bed bound.  

Tomorrow I get to get up early YEY!

 
Did someone say 6am?

Ok I’m not a morning person, in fact I don’t know anyone with Fibro or chronic fatigue that is.  Tomorrow I get to meet some lovely customers so they can put a face (mine) to a name (mine) very early in the morning.

I don’t mind.  I think I told my boss the last time I got up that early was at Christmas.

How to declare conditions to new employers, it’s tough right?

I’m yet to declare officially my conditions, I’m doing this tomorrow.  It’s such a hard decision to make, because I desperately want to prove to them how dedicated I am, and that I can, despite my illness be a valuable asset to their team.  I also fear judgement, knowing that I’m in probation and they could just let me go… Out into the realms of unemployment, something I do not want at all.  I do not think they will do this.  Not without being given a chance anyway.  

It’s going to be challenging, but my life is challenging no matter what I do.  Once the pros and cons were weighed I knew I had to remain employed.

I don’t know how I’ll cope.  I’m sure I’ll go back to the days of, work, sleep, work, sleep, work… Whilst my body adjusts to its new demands.  I know it will be painful.  I know my Craig will have to make me more teas and get up earlier to help me bath and stuff.  I’m going to need to take more painkillers.  I know at least one and a half of my 2 days off will be slept away.

I’m gonna need ALL of my spoons.

  

So why do I bother?

Because of my self worth

My drive to feel useful and needed

My passion to embrace my own independence 

I get out of ‘these 4 walls’

I make new friends 

I learn new skills, so I feel like at least part of my brain is not willowing away in a foggy mess

I will have to drag myself kicking and screaming out of my bed in the morning, yes the AM! 

I will embrace days, whole days

I’ll feel like I’m living again

I will pay my bills, and not rely on welfare and be at the beck and call of our awful government.

I will not be wasting away, I might even get stronger physically.

Wish me luck (particularly for the early start!)

Oh…. We also move home this week.  Nothing like doing nothing for months and then all of a sudden changing your whole life in one week! 

  
Next week we are on holiday, so I’ll take some beautiful mountain pictures and we can all breath a sigh of relief and relax again!

Big hugs to you all, stay strong xx


My Illness is NOT a Secret. But why should I explain it to you?

invisible me

This is a photo of me… photo-shopped to make me grey and invisible, as that is how I am feeling right at this moment.  My illness is invisible, however I am not, and this seemingly gives people the right to ridicule me in public, it’s not fair and I want it to end.  Not just for me but everyone who goes through embarrassment like I did today.

I will not use my walking stick just because it provokes your compassion, I will not do anything to the detriment of my own independence, just so you can see my illness and not take the piss out of me.

You wanna know what happened?

OK.

Today, no less than 3 hours ago, I was in the Ramsgate Waitrose store very close to my home (that I traveled to, 1 stop by bus), getting a few bits for dinner this week.  I was having a particularly good day, and went without my walking stick, I knew I would be able to hold onto a trolley in the store, and this is always more helpful than the stick is anyway!  I felt good to get out of the house and mingle in the community a little bit.  I start work again soon, and I’m trying to build my tolerance/strength up.

I haven’t been able to carry a shopping basket for several years due to serious pain building up quickly in my arms.  They are not an option for me so I chose a shallow trolley.

I went to the meat aisle and placed four items into the trolley and went to the checkout, there was a small queue.  I felt ok, calm and relaxed, when the man in front turned, chuckling to himself and said “That’s a bit lazy isn’t it?”.

I looked at him, smiling, bemused…

He went on “Bit lazy isn’t it, all that trolley for those few things?!!”.

I just smiled and shrugged my shoulders.  He didn’t say a word more as he turned and tended to the 3 items he had carried to the checkout.

Normally I would gob off.  Do the… “Actually I have a disability, I can’t hold baskets, it hurts me, holding onto the trolley helps me walk”…. But I didn’t say this, I stood in silence.

Those few chuckled words had reduced me.

Made me feel inadequate.  That man shat all over my good day.

See it was only a few words that normally I could laugh off, explain, educate the misinformed gentleman about my plight and that of thousands others like me.

But in that moment, I was broken, reduced to silence.

I came home and cried.

See my illness really is invisible whilst you can see me.  You see me, Lis, the lady in her mid 30’s, who looks younger, wears eyeliner and modern clothing.  She’s standing in the line, getting shopping for her boyfriend because hes been hard at work and taking care of her for months with little thanks and she wanted to do something nice for him on this sunny Monday afternoon.  He came home to her anger and tears.

Please think next time you see a lazy person, like…

A teen boy in the disabled seat on the bus

A man who gets a taxi just 5 minutes walk down the road

A woman with 2 items in her trolley…

Maybe next time you see a ‘lazy’ person… keep your thoughts invisible too.  Chronic illness, learning disabilities, mental illnesses are very visible when you live with them.

Love Lis x

Selfish ME (a delightful poem)

I’m the healthy looking woman who selfishly takes up the disabled seat on the bus, and lets the old folks stand

I get in lifts at train stations when I have no luggage, wheelchair or pram

I lean against coffee shop counters and anxiously pace in the queues

I doss on the ground on train station platforms

if you were me, so would you

Sometimes I get in a taxi

to drive me a 5 minute walk

People think I’m so lazy

Why should I explain anything to them?  What good does it do to talk?

I cover my ears when your baby screams loud

and I heave at the smell of your food

I pray that you’ll take that baby away

but praying don’t do any good

People think I’m selfish

Because I never make the tea

I struggle to get my fat arse off the sofa

I stare at the stupid TV

When I yawn you think I’m hungover

“one too many tequilas with lime?”

I am the wallflower at your party.  You offer me drinks, I decline

I left the party early

When the pain became so bad

that I stayed in bed for one whole month

I gave up, I felt so bad

My sleep it began to suffer, some nights I spent awake

Some weeks I spent asleep

just to recuperate

No more beloved running

and party lifestyle

I started taking medicines

to make the pain stop for a while

my brain became so heavy

like it was sinking in a fog

I couldn’t tell you the day of the week

to recall what I ate for breakfast in itself became a slog

I’m most comfortable in my own abode

in the dark, no noise, no cold

The pain and fatigue are too much for my brain

without this sensory overload

Sometimes I cant even shower

for the noise it makes me pass out

my man helps me bath, and he washes my hair

with him, I could not do without

But next time that we meet, you’ll say I look well

and that we should go out for drinks

maybe shopping and lunch

it’s only a hunch

and after all of this writing I need 40 winks…

Invisible Illness and Me

I wanted to write to you all to explain a little more about me.

I have a full time day job, I work in the mental health sector and have done for many years.  As you know, I also have my small business, making handmade jewellery and designing art cards.  I live in a lovely little flat with bearded Craig, the love of my life, and have lots of friends and a good family around me.  To many it seems I have a pretty perfect life.

In reality my life is a daily/ nightly struggle.

Now I haven’t come here for sympathy.  I have come here to tell you about this, so you understand more about me as a person, what drives me, where my business inspiration comes from.  I also want to spread the word about invisible illnesses.  It’s a bit of a hot topic at the moment and I am desperate to keep the momentum going, because it’s vital people who experience the stigma and frustration of having a disability nobody can see or understand, are seen and listened to.

I was diagnosed with Fibromyalgia about 3 years ago, after many years of being told that the pain and fatigue I suffered were due to depression.  That’s really gonna need a post or 10 of it’s own to fully explain.  In a nutshell my family GP was a locum psychiatrist and prescribed me years and years of antidepressants that didn’t work, until he ran out of things to prescribe and told me I was ‘non compliant’ with medication.  I complained about him, saw a new GP, who listened and took my pain seriously.  I got this diagnosis, Fibromyalgia (FM), finally I had an explanation as to why I had suffered for so many years.  Now, 3 years down the line, my even newer GP thinks I actually have M.E (or CFS or SEID for the really up to date people).  This is because the pain is more manageable than the fatigue I suffer, and exercise, no matter how small can put me in bed for days at a time.

I do hold down a full time job (just), and the only way I can do this is by having daily care and support from bearded Craig.  I wake up in the morning feeling more tired than when I went to be, I have no energy to bath and cannot stand up long enough to shower.  Occasionally bearded Craig will help me to bath.  I cannot wash my own hair as the pain and fatigue in my arms makes me feel nauseous.  I rely on facial wipes and sponge baths at my bathroom sink.  Dressing is exhausting.  I always apply make up before leaving the house for work, I couldn’t bear to let people see me looking as ‘dead’ as I do when I wake up.  I rely on bearded Craig to make me tea and breakfast, if I am feeling well enough to eat.  I am driven to work, I cannot sit on a bus comfortably anymore, sitting upright in a chair can be excruciatingly painful and I cannot stand still for more than a minute or two.  I do not drive.  I have such horrendous mental fog, memory and concentration, I have never been able to pass a driving test and even if I had, I am not sure I’d be safe on the roads!  I have lots of coping mechanisms to get through the day at work.  I am lucky in that I can manage my own diary and workload.  It’s mega difficult to get through a day, sometimes I need to travel quite a bit and this is exhausting, lots of taxis and trains (luckily with trains I can usually find a comfortable way to sit, but have been know to sit in the aisle on the floor to be comfy).

What keeps me going is my love of my work, I support people who have mental health problems, I adore doing this, I thrive on helping others.  It gives me such a sense of achievement, and that helps to keep me well in my mind, if not my body.  I have been hell bent on continuing to work full time for a long time.  It’s only been recently that I have started to consider alternatives, because I know my body is rebelling against me and dedicating myself to my work, is horrendously impacting on my ability to live a fulfilling, happy, social life.

When I return home from work, I am drained.  I do very little, and try to maximise on rest for the next day.  Sometimes I go straight to bed for the next day.  Beareded Craig?  He cares for me, he cooks for me, he brings me tea, he wipes my tears away.  God I love that man.

Last week I did something pretty extreme, and went, on Wednesday night to an amateur theatre group.  My friend invited me, and I decided I needed to do something other than sleep and work.  So I went along.  I enjoyed myself, I met people, and I acted, something I haven’t done for a very long time.  I used to do a lot of drama, and I love to sing, I fronted a rock covers band for a long time, before illness took it away from me.  I loved the group and the people were lovely.  I wont lie, it was a struggle, and I yawned my way through it and the next day at work was pure hell, but I am going back, and doing a 2 night show in May.  I think I am gonna book a few days of work after so I can recuperate from it.  I have decided to start putting my social life higher up on my priorities scale.

Part of the reason I am trying to focus on growing my small business is so if I can’t work anymore, I will have something meaningful to do that will pay my bills, keep a roof over my head, and enable me to live my life comfortably and happily.  I see so many people suffering from illness, in these times when our economy and government do not help us.  I don’t want to be victim to the welfare state, I want to thrive despite my illness and I want to help others to do the same.  I believe that my life is in my hands, and it’s up to me to overcome my own battles.

I also desperately want to be a source of support and encouragement to people like me.  People who’s illnesses are not visible.  I am developing a range of cards and charms to gift to people who have these struggles, to let them know they are not alone, that despite their illness not being visible, you know what they are going through, you remember, and you are with them, supporting them to get through each day.

I am the woman in her mid 30’s, wearing a suit on the train, make-up done perfectly, little trolley case on wheels, looking like all the other professional commuters, desperately needing that last seat.  But there’s a teenage boy sitting in that seat now, and he’s playing music loud on his ipod, tapping his foot in the aisle.  Do I tap him on the shoulder?  Ask him if he minds if I sit down? Because I am disabled?

And before you think he is the one that should give up his seat.  Do you know him?  Do you know what he is suffering from?  Why he might need that seat more than me?   Maybe he has the same illness I do.

With love from Lis xx