Spoonie Solutions

Hands up who has #spoonie problems? Me too, I probably whine about them a lot. You’ll know this if you follow my ig stories! So what’s this #spooniesolutions all about? Well it’s turning the hashtag #spoonieproblems on it’s head. Before you cry in protest its not because the problems are not valid, quite the opposite in fact. They matter so much, and need to be highlighted. #spooniesolutions is all about identifying the problems and shouting about them. Then I want to attempt to discover some answers.

This all came about after a combination of discussions, and a personal review of my blog and Instagram. I had a big appointment recently in which I found that, as expected, I have an area of hyperperfusion in my brain. In the appointment I took it in my stride, but as the results sank in I felt very upset. Part of me wanted to jump for joy that I have a positive (as in something showing up not a feel good) result, and part of me was scared and in shock. It explains a lot including migraine, and serious mental health issues, confusion and fatigue. But it broke my heart to think that it is active in the blood vessels in my brain. For my own sanity I had to recognise my upset (spoonie problem) but find a way to deal with it (spoonie solution). For the first week I cried and it still makes me cry now. But I am getting there.

I’m in a position now in which I can reflect on how I’ve survived through the past few years. Yes that’s dramatic but it has been survival. I can hand on heart say that it’s been through living life slowly and taking time to nurture myself by being creative and living a more simple life. I want the solutions to #spoonieproblems to reflect this but also offer a range of approaches that I hope will be useful to me and anyone else that is out there and reading. They’ll include practical advice, campaigning for change, and most importantly opening up the issue for discussion.

As a veteran spoonie I feel qualified to address the issues from an insider’s perspective. But to ensure that the solutions given are thorough and actually useful I will be consulting with other spoonies via the comments here, Instagram and in real life. I will also include resources from medical practitioners, other websites (such as The Mighty), apps (such as HealthUnlocked) and relevant organisations.

I have a few solution guides planned including travel and holidays (vacations), everyday travel, work and benefits, and hobbies. All of these will include parts of my personal story and anecdotes. But I will approach how to deal with them by being creative and living slow.

Please don’t be shy, I’d love to help your share your story and looked at spoonie problems together. Let me know in the comments, via social media or email.

Look forward to hearing from you…

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Creating a bedtime routine

When the clock struck midnight on 2017 I decided to not make a New Years resolution. In fact at the time I was probably drinking a glass of bubbly and wishing I was in bed already 😂. I decided that this year I would focus on my physical health, which as you may know, is problematic. Instead of overwhelming myself I decided that each month I would set one focus to work on. For the first two months l’ve done Veganuary, and tracked my water intake.

For March the focus was sleep and here’s what I learned by tracking and focusing on it.

Medication

In 2016 I wasn’t sleeping for more than 3 to 4 hours a night due to pain and mental health. Being that sleep deprived does bad things to your wellbeing and even worse things to a body coping with autoimmune. When I went into crisis I was prescribed quetiapine which was great as it knocked me out and calmed the mind. The pay off was sleeping ten hours, not being able to wake up, and being in a constant fog. I’ve had huge meds changes over the past 3 months and dropped down in dosage on tablets that help sleep. This means I’m sleeping less but naturally so this focus has really helped me focus on natural sleep.

Undisturbed sleep

So one of my worst habits is waking up at 3am and staying awake till 7.30 am. When you then want to be up by 9 this is no good. I often need to wee in the night and have a terrible dry and painful mouth. This combined with pain in my knees and ankles due to Behcets, or bursitis on my hips that creates painsomnia, means I just couldn’t get 8 hours sleep. The meds above helped but without them I am the most restless sleeper.

Waking up

So I always aim for the average 8 hours to get up around at about 8am daily. I’d usually use the iPhone bedtime alarm on the clock app but often I wouldn’t fall asleep in time, or I’d not feel refreshed from sleep when I did. I have restless legs syndrome so would find I couldn’t get off to sleep in time. I also used my Fitbit this month to track my sleep and found that my sleep was so restless. Not really a surprise, as I mentioned above, my sleep is so disturbed. But I also realised I wasn’t helping myself as when I woke up I would be tempted to watch something on the iPad to help me get back to sleep but it was doing the reverse.

So after all this trying to focus on the problems I’ve decided to try a different approach. I wanted to make a change to the way I get ready for bed so that I set myself up for a good nights sleep and feel more in control of the individual elements. So I created a bedtime routine and thought I’d share it with you.

Making your own personalised routine

So the first thing I did was to pick a bedtime. I chose 11pm so I could aim to wake up at 7.30am ish. Then I worked back in half an hour blocks to create a plan.

10.30 pm

As this is the bit right before bed so you want to be winding down. Take these moments for a last minute tidy, but nothing rushed or intense. Turn your bedroom back into a tidy sanctuary. I put my clothes in the laundry bin and make sure everything is hung back in into place. My clothes are sorted Marie Kondo style so it’s great to keep it this way. I also tidy away any beauty products and clutter from the day. It’s here I take my bedtime meds and then hop/ into bed with a podcast playing. Oh and I found the best thing for right before you settle down, a pillow spray by Feather and Down that helps you get off to sleep. It makes me breathe deeply to inhale the incredible scent which helps with relaxing. Set up your beside table to make this easier.

10pm

I chose this time to try to empty my head. I try to keep it simple and uncomplicated. In true bullet journal style spill your mind out onto a piece of paper > check your journal > make a to do list for the next day > fill in any habit trackers and memories/ gratitude journals. Finally I pack my bag with any books or letters and post needed for the next day. Set up a place to keep your things for the morning including a charging station for your phone and battery packs etc.

9.30pm

Stretch and move. I find a last bit of activity before bed helps to firstly make you feel like your body is tired and secondly helps hugely with restless legs later on. I love yoga with Adriene.

9pmScreen free time! Try as much as possible to cut out your screen during your routine. This is the hardest thing for me to do but it is well known that the blue light affects both our health and sleep patterns so I’m trying really hard. To force me off I use the app Moment. This sets bot a daily limit and screen free time. Try to do something enjoyable in place of your phone so you don’t get tempted. Like reading a chapter of that book you’ve not got round to, or grab that colouring book you were given in 2015 and never completed.

8.30pm

Begin the wind down with a little self care. Take your bath now, I like mine scalding hot so I can feel my heartbeat and my skin turns red. Apparently by raising your temperature in the bath it then lowers your body temperature when you get out and makes you sleepy. If you don’t fancy a bath or don’t have time make sure you take your makeup off earlier in the evening so you’re not too tired and give up when you crash into bed later. I’m also trying to get into the habit of getting my clothes out for the morning, the night before so I don’t have to bother in the morning. I use the Cladwell app to help pick outfits.

So that’s my routine. It’s ambitious I know but I’m dipping into it to begin with. I always go for the slowly, slowly habit learning approach. So maybe pick one of the things to do for a week. Feel free to make it your own and find what works for you. I’d love to hear about your bedtime routines in the comments.

Anxiety girl

Hello anxiety that is making angry, scared and unsociable. Where are you coming from? I know I’ve accidentally missed some important meds and some sleep. I’ve worked quite hard volunteering, and it’s been Christmas, the most anxiety ridden time of the year. But clearly I’m a bad person who can’t manage myself.

I’ve got constant butterflies and I’m trying to do all the things to tell the negative thoughts to go away. But the voice gets stronger and I hear people talking about me and criticising as though they are in the room. I ignore it and carry on but it just gets louder.

Yesterday I didn’t have any sleep because I missed my meds the night before. The meds are the only way I sleep and without them it’s a nightmare of pain and bad thoughts and being fidgety. This combined with a migraine knocked me for six. I tried to take control of it but when the migraine kicked in I crumbled. I ploughed on and went to the cinema with my friends. I fed the migraine with darkness, drugs and caffeine. Eventually the pain subsided and only the tension remained. I felt exhausted and emotional and anything slightly negative made me catastrophise. I couldn’t talk to anyone and was convinced I just pissed everyone off. The wall went up and I teetered with a meltdown.

So I pulled my socks up and went to the pharmacy to get some emergency meds. I did my research and the Nhs website said to try your doctor (they were shut), then your pharmacy, then a walk in centre. I walked to the pharmacy in pain from swollen joints to be met with a pharmacist shaking her head. Instantly she dismissed me and told me she couldn’t help. I pleaded with her that I’d read the Nhs website and this is what it told me to do. She suddenly changed her story and said she could do it if I rang 111 for an emergency script. ‘Are you sure?’ I replied, the Nhs advice didn’t say this at all. But facing another day of suicidal thoughts and crippling anxiety was too much so I complied. ‘If they don’t get you one I’ll do it’ she said ‘but you have to try first’.

Half an hour later I was still sat in Boots. My migraine was returning and I was sat on hold to 111. The bright strip lighting flickered and pounded. I started to feel ridiculously hot and sweat soaked my clothes. My pain meds we’re wearing off. My knees, fingers, ankles, hips and back were screaming. I know I was beginning to fall over fast.

So we begged the pharmacy for somewhere quiet to sit. A super nice pharmacy assistant found us a small room and we sat with the lights off and a fan on. They asked if I wanted to go to hospital. No way Jose was I going just for meds, and a migraine, joint pain and anxiety. I agreed I would if I started vomiting , shaking or fitting.’ I explained that the best thing would be the just get home to bed. The pharmacist then changed her tact and said she’d only accept the 111 prescription and I’d need to go elsewhere if I didn’t get it in time. The inconsistency was a nightmare for my anxiety and I’d been there before to get them so was on their system. I had a bundle of paperwork to prove I was on them but it was a case of ‘computer says no.’ It was as though she was making it as difficult as possible and I was just annoying them.

The assistant, however, was wonderful and we chatted about mental health and chronic illnesses. I began to calm down and eventually spoke to 111 who said they’d get a doctor on it. We then went round in circles for the next 2.5 hours. 111 kept asking if I wanted to go to hospital as my symptoms were alarming. I didn’t want to go, the best place for me was home if only someone would give me the meds I’d manage what I’d manage everyday. I felt like a dick that caused a drama as eventually they tried to get rid of me from the pharmacy and ask me to start the whole thing again with another pharmacy. I felt like a burden and just wanted my bed.

After 3 hours, countless phone calls and giving my details over and over the prescription still hadn’t arrived. The doctor I spoke to was convinced I lived in Norwich. Erm no I said I live in Canterbury and had done for 17 years. I think I went to Norwich once about 12 years ago, it was dark and wet and I didn’t even see the town. So he continued to ask if I was visiting Canterbury. No I explained again, I live here, just like I’d told the two advisers I spoke to. He writes the prescription. Turn forward an hour and the script hasn’t arrived and so I ring them back. Im now in a flap that the store shuts in 15 minutes and I’ve sat here for no reason doing everything everyone is telling me to. I’m trying really hard to sit and be patient despite it making my pain worse. Speaking to the East Kent (not Norfolk) team again I will us to be near the end of the whole sham. Then I was told my surgery was Aldington . Nope I said I’ve given you my details 3 times it’s Chartham, perhaps Aldington is in Norfolk, I suggested!?

Anyway 10 minutes before closing the fax arrived and I was given 6 tablets in a bag by a rude and unsympathetic pharmacist. Lack of pain control and anxiety through the roof I’m a mess, I’ve convinced myself she hates me, all the staff have been talking about me and I never should have said I went to the cinema to hide from the light. I’m not sure who was judging me more, them or myself?

By this point every look, word and action becomes overwhelming. I’d tried to plan a nice New Years Eve with a cocktail menu and funny description bit that means everyone who was coming was included. My friend had rejected it by saying she’d only drink her own cocktail on the list. I knew her reasons were ok, she wanted to stick with one drink to not get too hungover etc. But in this mindset it’s rejection. The menu, lovingly made by me for everyone, went straight in the bin as soon as I got in. I felt as though I’d tried to make a nice gesture then been told I was controlling or had bad taste/ ideas. I was ready to give up and go to sleep and sulk.

Somehow in that moment I managed to pull myself out of it. I put on my dress and lipstick and found some inner strength to have a good night. I rebuffed the negativity and overwhelming thoughts and for the most of it laughed and had a genuinely good time. It didn’t mean I wasn’t squashing the ‘they all hate you’ voice constantly, but as dramatic as it sounds I survived another New Years! I’m proud of myself despite being exhausted because I won a battle.

This morning I’ve woken up with the butterflies. It’s the alcohol I drank acting as a depressant, I tell myself. It’s because you’re ill and tired. I start to work a little on a project I volunteered on. I poured everything I had into it but I feel like a failure. Every time I try to make something happen on it there’s obstacles, politics and I do the wrong thing. Now I’m utterly terrified of the meeting tomorrow and that I’ll be belittled. I can hear the conversations that are going on behind my back and I feel sick with butterflies. But it’s just another day that I’ll get through somehow.

I am anxiety girl and I think I’ve realised at the moment I’m not at my most well. So bear with me, I’m fighting it and it will be ok but I may be a little fragile.

As an after thought. Just like the meme says above I have 99 problems and 86 are in my head. If I’m working with you at the moment, or have been around you it’s more likely my sensitivity and brain than anything that’s real. Chronic worrier here gets all sorts muddled. I’m also excellent at hiding it all, even from myself.

How to find joy

  1. Walk with a dog, more people talk to you than if you walk alone
  2. Use the ‘golden hour’ to take a photo and marvel at your skills 
  3. Wake up just to see the sun rise and do step two. You’re allowed to go back to 
  4. Laugh really really hard till it hurts. Friends and YouTube videos help
  5. Make someone cake for no reason and share their joy 
  6. Show a child ‘wonder’ and watch their joy, it’s infectious 
  7. For slow burning joy plant some seeds and feel joyful each time you see them grow a little bigger, and think ‘I made that happen’ 
  8. Light a fire, indoors or out, and spend time roasting parts of your body till they go red. Decide it’s probably bad for you so sit and stare and getting lost in the flames 
  9. Eat cheese and don’t feel bad
  10. Climb as high as you can to get a really good view

Reality

For all those that may think my 6 months off is a lark heres a link to a little video. Do you know what it is and it isn’t fun, just like working is and isn’t. This is what most days look like unless I’m off finding a small break in the misery like flying a kite or walking my pup.

Plus I’m broke, on the verge of homelessness and generally a bit of a whinge.

I also carry massive amounts of guilt for not working.

https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FChronicIllnessOnThemighty%2Fvideos%2F1374582545896823%2F&show_text=0&width=560

Today

The streets itch with discontent,

The map was off centre all day.

Childish tears threaten to break through the adult face.

The stone walls sweat yesterday’s rain,

I pound the concrete with sticky heat between the layers of my clothes.

The lipstick curdles and I wipe it raw with paper.

 

Fingers bandaged from no fight,

I’m neither citizen or tourist just broken knees.

Guts cramping propel us from cafe to cafe.

Food sticks in my throat as I push it round the plate.

My hands tremble as they try to raise the cup,

Thick black coffee drives my blistered feet.

 

Something is not right in the world, I’m not quite here or there.

It’s ugly criminals saunter like they own the roads.

We ask ‘why are people so cruel?’

Then the man stops to pick up some other’s rubbish.

A women tends the silk and velvet with more love than she knows.

The smile of the woman on the bus is the most beautiful thing I’ve ever seen.

 

The flash from no camera, the sky opens and moans.

White then orange makes my heart pound.

‘Don’t walk on the floor with bare feet’ she says.

It makes me want to feel it’s force, to feel alive,

to take off my socks and dance with life on the cold tiles.

I bleed with the sky and prepare to begin all over again.

Sick in the head

So lets have a little chat about mental health… well my mental health.

I actually don’t know where to start. From about 15 I experienced manic and depressive episodes. I’ve also had severe anxiety for a long long time. There have been a plethora of traumatic life events and my physical health is screwed. But the past few years have been relatively stable for me compared to the past. It’s had its ups and downs.

What I didn’t realise was my relationship, which once allowed me to be me, was becoming toxic. I was being suffocated and dimmed until I didn’t believe in my self any more. At home I was walking on eggshells incase I upset the one person that made me so happy and free. Or shouting because I was literally being ignored and he pretended I wasn’t speaking; I thought I was going crazy. In fact I was told repeatedly I was. I’d be ignored for sleeping on the wrong side of the bed, and cry on my own whilst he went out.

I was lured into staying at home whilst he went out because of my illness and I withdrew more and more. I tried to manipulate time together and control this not realising what I was doing and that something was deeply wrong. Anxiety at leaving the house was returning and I never spoke about my life and what I was doing. I’d listen to hours on end to his problems and help him solve them. Coaching the other person to be a better person and neglecting myself.

My physical health was going hand in hand with this silent gagging. I felt permanently guilty for the unexciting, fat, ugly monster I’d become. He always said it would be ok and I was still beautiful, these were lies.

Then there was the courting other people. Horrid toxic people. My intuition has always been good and alarm bells were ringing. But I was forced to let these people into my home and berated for questioning it. Then came the series of public humiliations in front of them. He was no longer fighting for me, or with me, but hurting me.

Alongside this my physical health with auto-immune was slipping and I couldn’t cope with any of it. I was going to appointments on my own now and feeling very frightened. He got angry when I needed an ambulance. In the end he had to be told it was odd that you’d rather be at work (or maybe fucking that girl) whilst I was having a lumbar puncture.

I was fighting a battle with the world to say I really am sick, please believe me, I’m not a fraud. I’d drive to work in so much pain I’d stop and vomit 3 or 4 times along the way. I let people down and got so muddled. It was like daily torture. I earned less and less and he made me feel like a burden. I desperately tried to keep earning and budgeting. Quite often I was covering up his big mistakes and lavish lifestyle. I agreed to put my name on a huge loan so he could get a brand new motorbike we couldn’t afford that was impractical and feeding his image. I was made to feel bad for not being able to ride it.

I heard my friend’s story about domestic abuse and alarm bells rang. I ignored them because I still believed in him but it was there, I was in love with a narcissist:

  • Love Bombing – He made me feel so special, this was it and I was the one. He promised me the absolute world and went above and beyond to win my love.
  • They can’t admit when they’re wrong. – He never ever said sorry even if he was proven wrong. You’d make me beg for forgiveness or tell me I was going mad.
  • Conversations are one-sided. – in the end I was helping him run his business but he didn’t even realise I was directing a play!
  • They’re really, really ridiculously good looking. I was made to listen to hours of how he got girl’s and guy’s numbers over the bar and was the most good looking guy at work. I was always made to feel lucky then ugly.
  • Their brand of empathy is self-motivated. Being the kindest most generous person in public was his forte, and it tricked us all into thinking he was so kind. It wasn’t like this at hime, the brooding moods and hours of silence or being picked apart showed that.
  • Your needs and requests don’t matter. So in the end I got so sick I couldn’t move, I felt terrible that he was my carer. I’d not ask for ages but then not being able to get upstairs for meds or into the kitchen for food. I’d guiltily ask for help or painkillers. He’d then stretch the time out as long as possible till I’d beg like he had some kind of control. It was torture yet always my fault. And the same was happening with our dogs as he neglected them then blamed me.

So towards the end I couldn’t work and was in and out of hospital. The experts were still saying it was OK, I was not OK. I was in pain most of the time and not coping, I was taking a lot of painkillers and 9 different meds everyday. I didn’t go out or forced myself to be exciting then be in bed for a week in agony.

All of this went on relentlessly and I was trapped in a cycle of pain, misery, bullying. Then we had to move house, I was exhausted. I knew he was cheating but made to feel so awful I didn’t have the self worth left to confront it. I was fucking up work and working like a maniac. I suddenly realised I was having suicidal thoughts.

I was very scared by this point and spent hours fantasising and planning. I tried to voice it but he didn’t listen. I got so sick with migraine I needed an ambulance but he wouldn’t ring one and then abandoned me.

Then out of hospital a week later I had another crippling migraine. I left the wedding we were at telling him why I couldn’t stay. I drove myself 45 minutes home then the vomiting came. I text to see where he was. I now know he was cheating. He came home and his only words were ‘its over there’s no talking about it’. Whilst I was at my weakest and most vulnerable he baled.

That was it for me. The switch finally flipped. My first reaction was flight, so I ran, my head full of ways to hurt myself. But I walked it out and bravely returned to the house to ask like an adult to talk about it. I wanted a reason why, to fight through it. To understand the cruelty and to be stripped of all control over my own life. I know now that he chose this moment because I was so sick and he is a coward. I also think he was in a corner and cheating. This is not how you treat someone after 6 years of building a life together. My voice was smaller than ever.

In one moment my life, trust and my home had gone. I already had lost my work and income and then my health was so bad. There was not an area of my life that was OK.

So I decided to end it. Not for attention or a cry for help. I just wanted peace. It’s hard to say I didn’t want to kill myself but it’s true. I really just wanted to sleep and not wake up. In that moment the pain of the world was just too much and I couldn’t go on. I panicked. I still in a way am annoyed that I wasn’t allowed to make my own choice.

It happened again two weeks later when he said the most terrible things to me after I found proof of the cheating. Even I didn’t realise how low he’d go in the moment of my pure brokeness. Telling someone they are mental and need help doesn’t help them but makes them panic. Panic that everyone will agree and say ‘lucky you escaping from that’. Saying ‘its been dead for years’ is the most hurtful thing he could ever ever say to someone who invested so much. There are things that were said that I cannot even write now as they are too painful. They make me want to vomit they were so degrading and bad. I flipped, went through anger and crazy. I shouted as loud as I could for help to those around me and I was saying I’m not OK. The next thing I knew were the police were climbing through my window and threatening to section me. I had tried to sleep again.

See there’s always a story behind the mental health and mines supposed to be down to my physical health and nervous system damage on top of all of this trauma. I’m not ashamed of my actions at all. I only worry that I still am a burden to others and let them down or scared them silly.

I didn’t actually mean to write this post at all. It was going to be something more generalised about mental health. But it kind of all fell out onto the page. One of the hardest things I’ll ever write and this is so paired back.

I’m also not a victim, I don’t want you to see me as that, I am always trying to fix things. This time my energy and life force ran out. My buttons were pressed. My control taken away. I really did choose flight but now I know I am full of fight. Bring it on. I survived this and now I want to do it my way.

 

Sharp enough

A friend posted that they could see me ‘developing an edge sharp enough to cut through this’ and carve a new beginning.

There’s been a lot of soul searching going on inside this skull over the past few weeks. But it’s all felt like a dull bladed knife trying to cut through lead.

You feel that you know yourself so well and can see your path. In a heartbeat it changes. A few cruel words that bring your world crashing down. Everything is bought into question. The smallest of routine, even the way you make tea or breathe.

The problem is all the destruction is so silent. Everything has changed for you yet the world still silently remains. It carries on without you. I’ve been walking the streets with voices muffled and blinkers on, yet inside a war rages.

All the rituals you made no longer have purpose and you carry on performing them till they are redundant and ridiculous. I caught myself hanging your washing on the line and didn’t know why… energy wasted on you. Taking two mugs out instead of one for coffee. Every word spoken has to be corrected. ‘We, I mean I.’ ‘Us, I mean me.’

Midway through crisis I saw ‘Things To Come’.

The protagonist’s life was changed in the moment her husband announced it was over, that there was someone else. A few meagre words to change an existence and send a life into crisis. More and more went wrong yet the film seemed so calm. Her life was disintegrating around her like a mirror of my own existence. Love, death, job all at once. Her existence questioned.

We (not the relationship we but the friendship one) waited for the revenge, the meltdown, the affair to match the inner turmoil. But it never came. She got a cat, smoked a joint, cried alone. Were we cheated because of the lack of drama? I felt it at the time because I wanted the catharsis of watching someone else meltdown then make it again. Slowly I’ve realised that there is no instant fix but we quietly feel the pain in order to change.

Inside all this quiet death of a life is a sea of turmoil.  But that’s just it, it’s on the inside and the world keeps on silently turning around us. We have moments of anger in which spiteful words are thrown to try to provoke the world into anger with us. We have reckless moments to feel alive to match the pain in our chests but the world still remains waiting calmly for us. Standing in the field watching the season change and the ghosts of my self harm race by I finally stopped and listened. The world was changing once again, partly dying and going to sleep before being reborn. I would stand and see the ghosts of others before me and those yet to be.

During this time we have the chance to be anything we want to be. We are stripped bare and our inner selves exposed. I’ve cried and stamped my feet, tried to dull the pain, let the blackness from the hurt slip from my tongue. I’ve tried to move this process on without stopping to breathe.

All this has quietly been sharpening my edge. Discovering a self that’s always been here and can thrive. The problem with a sharpened blade is the danger of using it. I need to find and practice new routines. For the first time they are for me.

So I’ve decided to keep it simple. To slowly take little steps one by one. In crisis I did a personality test and found out what I already knew:

To play with the first I’m trying to capture beauty however big or small.

Today we walked on the hills above Barcelona. The view was immense but my favourite thing was this tiny window with its beautiful succulents. Almost overshadowed by the might of the city, someone had taken the time to make it so pretty. My images when I play this game will be captured with the #seekingbeauty

All brine and piss and vinegar

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All brine and piss and vinegar,

my mouth is raw.

The pages full of false knowledge

blame the ‘lies’ that my tongue spits.

 
Blisters appear with each spiteful word,

spat at you in a moment of rage.

Anger trapped, desperate for an escape.

They are your lies not mine.

 

Tongue raw from yesterday’s drinks,

burnt and scraped with comfort eats.

Morsels that last a moment,

before they decay and rot.

 

I cannot taste anything but bile,

and vinegar and pain.

I seek the comfort of cold, smooth

kind and compassionate words.

 

My mouth is silenced,

I wake with it glued tight,

a mess of brown clotted blood,

teeth caked in earthy dried fluid.

 

But from inside there is something,

spun from a silver thread.

It speaks truth through your lies.

It’s a tale yet to be told.

 

‘All brine and piss and vinegar’  is borrowed from The Decemberist’s song “Grace Cathedral Hill”

The book that told me ulcers are caused by lies also told the reader period pain was caused by not embracing being a woman enough. I rarely lie, any more than anyone else. I love being a woman. Go figure? It’s like trying to be rescued by a Christian who keeps on insisting my auto immune is because I don’t believe in god. I don’t. Theres some proper drivel out there. I choose to follow my heart.

 

 

Bird. Moon. Mirror. Lighthouse. Wolf

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There’s a caged songbird in my chest,

It’s meant for the sky and riding the air.

It forgot how to fly.

It flutters and bleats and can see the other side,

but my ribs hold it captive.

 

There’s a moon in my head,

Its meant for the ocean and to follow the sun.

It forgot how to shine.

It waxes and wanes and can see a path,

but my skull holds it prisoner.

 

There’s a broken mirror in my eye

It is meant to reflect beauty,

It forgot to be present.

Now it only see’s a painful past,
my gaze holds it there.

 

Theres a lighthouse in my soul

It’s meant steer the ship through the storm.

It’s light is buffered by the wind.

It looks to the future and brighter days,

but it’s light is dull against the fog

 

There’s a wolf in my body, 

It’s meant to be brave and care for it’s own.

It lost it’s pack.

It licks it’s wounds and takes time to heal. 

It will bear these scars with pride.