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…

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.

Through the looking glass.

And the world spun on and she disappeared in between the gaps. The mirror looked like another room, but as she stepped through there was no drama or magic. She just slipped, into another place between the glass and out of sight.

It wasn’t a sudden event but had been a gradual process of slipping and fading. She once had burnt brightly and fiercer. She once had maybe been liked or even loved (or maybe duped into believing so). But friends who declared allegiance grew tired of her melancholy and as the dramas faded away, they too stopped calling. They wouldn’t be there with their promises a second time round. Their false declarations of solidarity and support made it feel worse.

Life was old news, just like her. She was unable to move forward, no energy to write a new chapter. Her brightness and glow from inside dissolved. Whilst those around flourished and grew from strength to strength and she wilted. She became a nobodies somebody. 

The world turned and as she did she slipped further into the shadows. Everything she’d achieved and earned burnt away as others shone so bright. The world had robbed her and left everyone else with something whilst she was nothing. 

She can’t do this world. She’s too tired, too lonely, too weak envious, too much, in pain and doesn’t want to anymore. Fed up of pretending, enough was enough. That’s when she discovered that the no place was a real place. A chance to step away and begin from scratch. It was her story, owned by her and she held the pen. She could write something new in a way that was  like no one else’s.

She held the pen and began to draw. The first thing she drew was a boat. Not grand, just a tiny vessel. Nothing more than a board bench and some oars. She climbed onboard and launched into the inky sea, and didn’t look behind even once.


Brain malfunction

Sorry this talks openly about suicidal thoughts. If you don’t want to know don’t read on.

You know you’re not right when you walk past a beautiful place and think ‘I want to die here’. It just seeps into your conscious like damp in an old house. Then thats it, your head fills with mildew and once again your at the bottom of the hole. You claw your way slowly back towards the light. Knees grazed, nails ripped and dirt in you hair you stand up one more time.

Disclaimer: I’m OK today which is why I can write this so no one send any police or ambulances or whats apps. If its any consolation I had to cross a railway track about 5 metres from said beautiful spot. I stopped and took my earphones out, looked both ways before carefully picking my way across the track. This is what mental health feels like, in a heartbeat you take care crossing the railway but want to drown in the stream. I constantly surprise myself. I got asked what stopped me I couldn’t remember at the time but I remember now. I didn’t have any stones to weigh me down, no painkillers to make me sleep and I thought if my phone gets wet I won’t hear music as my last thing. Rational hey?

Today I am thankful for:

  1. Beth who cares so much
  2. Sally and her words and depth
  3. Cherries

Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

fullsizerender

 

 

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.

 

It too shall pass…

…Is the phrase everyone keeps saying over and over. Most because they’ve been there and know the pain and moved on. 

So this marks day 12 since heartbreak. My problem with it is it’s not linear. It doesn’t ease with the day but bounces around. I’m ok for a couple of hours then the sick pain returns in my chest. If everyday got slightly better I may be able to handle it. There seem to be major stages I return to. I’ll try to describe them. 

Overthinking – I keep catching myself here. My brain gets stuck in moments from the past. Beautiful memories that create pain such as swimming in the sea, throwing pizza off cliffs, birthday cakes and drunken conversations. Moments of absolute trust and intimacy that will never happen again. Then there’s the future that you planned and dreamed of. Yesterday I went to IKEA with my sister and everything seemed like a painful reminder that I don’t have a future. Well I do but not the one I planned and nurtured. My beautiful home that there’s no point in building. All these things to buy but I don’t want. Holidays and memories that won’t happen again. I know I can hear you saying they will but I am mourning the loss of them not being the same. Places in which I was so happy and secure. 

Numbness – so stay in the present is the advice. The present is now and where we live and mostly it’s ok and a distraction. It’s better with others around but it feels like a slog. Partly I feel complete and utter exhaustion. I’m trying to figure out if this is emotional or part of chronic illness as I often feel like this without the huge life changing stresses. It leads to complete apathy and numbness. One of my biggest strengths is my ability to see the beauty in the world and all of a sudden it seems like an ugly place. Even driving into the spectacular Malvern hills I couldn’t muster a wow. Instead they become a wall of darkness, like a prison preventing me seeing the world.

Crisis – Both of the above patterns seem to lead to this. It is the absolute worst state to be in. Utter dispair takes over and your brain is flooded with  dangerous thoughts. Completely emotionally overwhelmed I panic and my brain works at a million miles an hour. The frantic questions pour out and I just want it all to stop. This is the bit that exhausts me, taking everything left. I try to reach out to people but I don’t want to hear their advice. I claw at anything I can to keep me from drowning. I fear this place and it creeps up unexpectedly.

Irritability – or is it plain anger? Anger that I was duped and lied to. Anger that I had this snatched away without a chance. Anger at myself for being fat and ill. Irritable at others for their words of wisdom and saying what’s true but not always comfortable. I found this on the Pacifica app I previously mentioned. I vent in a forum then get a response which is harsh but true.


 I love and hate this advice in equal measure. The truth you don’t want to hear.

So today my plan was to recognise all this and pick myself up to something stronger and with future. To heal and be kind. To build a future even if it doesn’t have shape or form yet…

Limbo | Some words about this adventurer

There’s a creeping sickness inside my chest.

There’s a living ball of weeds that have a grip,

slowly they snake their way through my ribs,

worming their way into my fractured heart.

It’s in my head but it’s real nauseating pain

that races down my arms till they’ve been hijacked.

Slowly they consume me before spitting the remains out

like the fragments of vomit after being sick for hours.

My heart thuds a sickening acid beat,

conjuring a heat that rises and I give in.

 

Then I forget for a moment and live,

but living becomes a limbo, a holding place.

I’m split in two, too scared to be alone,

too overwhelmed to sit with you and open my mouth.

A warrior and a victim, resilient and weak,

I’m frightened beyond belief.

I’m ‘all about me’ it seems, and irritated by the world.

Everything feels like walking through an endless desert at night,

I can’t see beyond my hands which are so cold and alone

I’m thirsty and need shelter but cannot find the right place.

Your company is welcome but never the one.

No one is the one thing I want.

 

I want to close my eyes to the night’s sky

I want to join the stars and become part of the nothing

I want to stop fighting and trying

I just want rest.

It’s there within reach, within a plastic packet,

It’s just a swallow away from peace.

It’s a wild and dangerous place

full of beasts that make me alive.

 

It’s like a thief came and took my OK, my safety, and my future.

I feel numb and uninteresting to the people around me,

kind people I don’t have the words for.

I feel like I lack a purpose,

I’ve been cut adrift from everything I thought I was,

I’m a tiny, leaky row boat on an inky ocean.

People believed this vessel was a ship,

It never was, it was just a leaky tub that was clinging on.

 

There is a beauty out there in the endless starry sky,

but at the moment it’s just out of reach.

I’ll find my map and telescope soon but please hold in there with me,

I’m just on a break from the adventure.

I’m doing all the emotions at groundbreaking speed,

and someone forgot to install the emergency stop.

I won’t make you promises as I have none to give

but I may surprise you all.