Find Your Superpower

What’s your super power? Well I’ll tell you a story about mine…. A while ago my sister had a gene test come back as an abnormal mutation, and as soon as I heard this my brain jumped to the X-men who are all ‘mutants’ with super powers caused by mutated genes. I mentioned it to my doctors (not the x-men bit) at the Behcets Centre and they tested me and unsurprisingly it came back as positive too (TNFRSF1A variant R92Q incase your interested, it’s sometimes associated with TRAPS and MS neither of which I have). Since then we’ve been joking about what our  super power may be, I have ask my doctors when the power is going to appear, we’re all still waiting patiently whilst they look bemused. But it has got me thinking about how recently people with disabilities have been represented as superheroes and what the impact of that is.

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Image from http://superheroseries.co.uk/ who  are ‘the UK’s one and only disability sports series for the Everyday Superhero!’

There’s been a big change in the way people with disabilities have been seen in recent years. The Paralympics in London 2012 showed us athletes who were able to do everything despite having faced illness, accidents or birth defects etc (see Channel 4’s Advert Meet the Super Humans, it still gives me all the feels). Even the popular tv chat show, The Last Leg, sprung up from the games with 2/3 of the hosts having prosthetics. It championed disability and difference through comedy and sport. It’s still broadcasting in the prime Friday night spot over 6 years on (though it has sadly has moved away from its original roots of disability visibility and rights). With its triumphant music, Public Enemy’s Harder Than You May Think, reporting of the games it thrust people with disability into the mainstream as Superhuman, the true X-men.

One of the show’s prominent features is its hashtag #isitok and is used to ask is it ok that… type questions about current issues. In the beginning these were disability related such as.

 

But here’s where I want to ask my own question. #isitok to be disabled and not be a superhuman? #isitok to sometimes be weak and fall apart? #isitok to just be a normal everyday person?

Am I a superhero or a super victim?

Being chronically ill means that I often find myself sometimes being a little bit super hero and sometimes being a little bit the victim, but mostly a real person thats none of these.

I am very aware that people think I’m always winging about being ill or broken or in pain and its true (theres another post coming on this soon). The fact that the constant pain is held in 90% of the time is a feat of superhuman strength that you don’t see. BUT there’s points at which I reach crisis and fall apart and these are my ‘victim’ moments. These points usually come at times when everything reaches a peak pain levels, or I have fought so hard with benefits and housing and come across another stumbling block. At these times everything falls apart and I don’t want to be strong. This is the time that people offer words of support and point out how string I am the rest of the time, how i’m superhuman.

Most of the words about being strong come from others as words of support. I completely hear when someone is saying you are so strong and it is a compliment. It does boost my self esteem because it acknowledges that 90% of the time that my mouth is shut and fighting the pain, or the loss of my life as I knew it. But I’m going to say this because its the truth, not because I want to offend people: at the same time as it being a compliment it is also a burden. I don’t want to always be the hero of this story.

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Sometimes it would be nice to crumble and for that to be ok. To fall apart and someone else play the hero. Sometimes I’m tired beyond tired. The pain has worn me down to the point I can’t live with it anymore. The system of benefits has broken me and I don’t want to feel like a criminal for asking for help from the state that I’ve paid into my whole life so far. I don’t want to hear ‘stay strong’ when I can’t see an end to the housing crisis I’m in. I don’t want to hear this will change when 2 and a half years is my limit and I’m saying its gone on too long. I just want to fall apart and that be ok.

The pressure to perform

So I think you get that living with a disability isn’t fun and we to be honest we are not always feeling superhuman. We are ordinary people and like everyone some like playing sport and others don’t, a small minority will be athletes. The risk of presenting people as superhuman when they compete with a disability means that the rest of us that don’t are not doing enough to help ourselves. To be honest I hate playing sport, especially those played on the olympics (I do love watching them though). This is probably because I’ve been hyper-mobile my whole life and sport really hurts! But it’s just not in me to do it. Does that mean that I am a failure even at disability?

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Invisible illness and sport

When I look at the Paralympics I do also want to ask is it also ok to ask why invisible disabilities are not included in the games? In fact we are rarely represented at all on screen or even as disabled people. How, with fatigue, can we train and practice to compete? How with joints that dislocate can we complete in running, leaping and jumping? How with fluid in our joints and excruciating pain can we whizz round a basketball court or hit a volley ball on the beach. I think all this highlights is that the disabled community itself still hasn’t accepted chronic illness and invisible illness fully. So I’ve asked myself what sport could we compete in? Where are the events for napping, getting dressed, walking the dog? Because sometimes just daily activity is our superhuman feat: that getting out of bed in the morning is like flying to the moon and back.

I’m going to finish this post with an anecdote from a close friend who has narcolepsy (she’d be my competitor on the napping event for sure). She once asked me ‘If you could lose your legs or have a chronic illness which would you choose?’ And my answer in a flash was lose my legs, and she said she had answered the same in a conversation with her husband. It in no way comes from a place of saying losing your legs isn’t life changing and devastating, because it is. But it comes from a place of certainty and being able to adapt. With losing my legs I would learn what I can and can’t do and work with this. My capability wouldn’t change so drastically from day to day, but be a constant thing I could learn around. It wouldn’t be easy but I’d still have my health and energy. I could work towards something like the Paralympics.

Syndromes like Narcolepsy, Behcets, Auto-immune, Fibromyalgia. Lupus, RA, EDS etc. don’t allow for this. They are tricky because its like flu everyday and its unpredictable. They rob your life in a different way. In addition to this the symptoms are often not seen by others so completely misunderstood. You don’t see that under my clothes my joints are hot, full of fluid and dislocating. That I have sores that burn and ache. That at the beginning of the day I can’t walk properly for 3 hours or that at the end I’m moaning in bed from pain of the day. That my biggest spend this Christmas was on eco incontinence pads. That the fear of running our of painkillers produces panic. That I’m tied to medication and its a constant worry. That my diagnosis is permanent, incurable and my life changed forever.

The Paralympics 2012 began to change the world’s view on disability and watching that superhuman advert still fills me with awe. But it is only the beginning. The fight doesn’t stop here. I know that I am not represented by these athletes but I know they’ve opened a gateway into acceptance. That those few people competing have changed the view on what disability means. But most importantly they’ve made disability visible. The next steps are to make ALL disability visible. But to do this in a way that recognises that superhuman means coping with the everyday. I got up and wrote today, no one will give me a medal for that. But I am happy that I’ve achieved this.

I am a superhero of napping, baking, gardening and making. My superpower is creativity. I’ve often been encouraged to apply for the Great British Bake Off but I know I couldn’t because of my disability. I was so encouraged to see Bryony this year compete and that her disability wasn’t drawn attention too, she was a competitor, that was it. I would love to work with producers to find a way for this dream to happen but I just don’t know how it would work.

I found my superpower because it is my everyday and my drive. Everyone has their own too you just have to dig to find it. I also know is it is ok to be strong and also sometimes weak.  It is this that makes the best super hero story, the ones we love are the ones that are human and mess up. We are all super human, some are just a little more tired and achey, but we are just us.

Whats your superpower?

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.


How to do a bootfair

I think bootfairs are uniquely British. They’re similar to flea markets but different. Everyone rocks up in their vehicles, puts out a rickety decorating table then flogs their unwanted stuff from their boot (trunk if you’re American).


So I wrote a little guide to bootfairs here:

  1. Clear out all your junk and think it looks like the best stuff ever. Mentally top up in your head the £200 you’re gonna make.
  2. Rope in someone unsuspecting friend, who has never done a bootfair so will be unjaded.
  3. Cram it all into your car with your decorating table and camping chairs. Get your float and price labels ready and feel smug at how organised you are.
  4. Get up at some ungodly hour on the most holy of lie in days, Sunday.
  5. Drive thanking the fact no one else mad enough to be up at this hour because a) you can’t see out any mirrors or windows and b) you can’t move the gear stick without everything falling and crushing your arm.
  6. Get there and feel much better that you’re not the only one insane enough to do this.
  7. Panic pull everything out the car and frantically set it up whilst the bootfair pros pull and poke your old belongings shouting ‘how much, how much’.
  8. Panic more because you left your float at home. Go through every pocket, purse and the  footwells of the car in search of change.
  9. Step back and survey your table and notice how your stuff now looks like the shittest stuff ever and realise you’re probably gonna make a fiver not £200.
  10. As people paw at your old stuff you feel slightly naked and like everyone is judging your life right now.
  11. Get really angry and defensive when someone haggles over your possession that is £6 and they want to pay £5 but you’re not budging. That waffle maker was £30 only 3 months ago (fuck you).
  12. Get bored and take a wander amongst the rows and rows of everyone else’s toot. Aisles of soup bowls and picture frames. Clothes wracks of plus sized sequins and every species of animal made of bone china.
  13. Spend your forgotten float at the burger van to break a twenty you had in your purse and sneakily get more change. Try to get something that costs nothing but that is so suspect it should come with a public warning. Its also probably safe to eat a ‘burger’ as a vegetarian because it’s never even seen a cow. 
  14. Return to someone haggling with your buddy over a 20p item. They want it for 15p and it’s 5 pence you difference you cheapskate.
  15. Have a little rush of sales and feel energised by the fact you’ve got up at 6am, broken your limbs hauling boxes and bags and sat for 5 hours in a field for £20. That’s £4 per hour pay and there’s two of you so it’s £2 per hour, illegal.
  16. Get all energetic and upsell everything to everyone and realise you’re the best market trader in the world. Make another tenner.
  17. Feel hard done by when they collect your £5 pitch fee
  18. Start to lose the will to live and stop chatting to people that come by, play on your phone feeling antisocial and refuse eye contact with everyone.
  19. Sink into dispear when you sell the waffle maker for £3 and realise you’re the mug 
  20. Start to panic that you’ll have to take half the shit back home again. 😱
  21. Realise there’s still an hour left and pray for a reason to leave. So you buy another coffee and eat into your £25 profit
  22. Battle with yourself not to buy the kitch picture on the stall opposite because you think will make your house all edgy and arty. You’ll only put it in the next bootfair, not sell it, and be stuck with it for life anyway.
  23. Sell a last few things for 20p because the thought of moving it again makes you feel sick.
  24. Start giving people stuff for free and feel like you’re the nicest person alive.
  25. Get so tired that you can’t cook so get Sunday lunch at a pub with your earnings and feel smug that it was free and oh well you got rid of a quarter of your junk.  

I secretly love a good car boot, if for nothing else the people watching. I also love seeing people’s stuff from their lives. I find them utterly exhausting for minimal return. But I like the idea that things are being reused and recycled, I can’t bear stuff going to the tip. Plus a they’re a great exercise in minimalising and deluttering and being able to afford a lunch out whilst on benefits.

What’s your best boot fair story or bargain?

The Jigsaw

Last night I dreamt of a jigsaw puzzle. It was double sided and so large that it wouldn’t fit the table. I kept trying to find paper or card for it to rest on in sections so that they were preserved whilst I focused on another section. Then I found bigger table to move it to but it would fill this one too. It expanded faster than I could manage. 

Everytime I attempted it I couldn’t remember which side I was working on. Then I’d complete a large section and feel good and a sense of achievement. Like a taunt, I could almost glimpse the larger beast. But then I’d realise another section had fallen apart as I neglected it to focus on the current one.

All this was going on whilst others were in and out of the picture. Some people came to help and got sections complete with me. Others came and their insesent chatter and advice hindered the process. All this was trying to be achieved whilst pleasing these people and juggling the pieces. I had to serve dinner, casually chat to people. Even the task of doing something for myself got in the way. I didn’t have time for anything for me and felt isolated and alone. 

I couldn’t tell what the bigger picture was. As I completed small parts people’s faces would appear and sometimes the people around me would know the story behind who they were. This bit I loved and it kept me going.

I got to the point where the jigsaw was so frustrating that it was easier to give up and live in the moment. To ignore it in favour of activities that I could enjoy that made me feel hapoy. But then it became the huge unfinished project. The big box of broken pieces and failure hidden under the table, threatening to explode from its box as it grew.

This morning I googled jigsaws in dreams and found they symbolise the different aspects of our life coming together. That you should take a closer look to see if all the parts actually fit and come together in the right places. Do they all belong?

This couldn’t be more apt as this week I’ve shredded my life once again and asked so many questions. Do I live in the moment because it’s easier and there’s less disappointment? Do I plan for the future, because everytime I do chance and disaster dictate anyway. Am I a hedonist who is so fearful of failure and pain I miss the bigger picture? 

I’m not sure I’m doing any of this right, and it all feels out of  control. Apparently life is exciting like a puzzle, because we don’t know what it looks like in its entirety. I just feel a little lost and would like a peek at the box lid please? Otherwise how do I know if all the pieces belong and whether I like the picture at all? 

Narrow Margins

I can’t ever get this song out of my head. The words, oh the words, they say my all thoughts. The melody gets me in the pit everytime.

“Narrow Margins”
I can’t live this way

Breaking all my rules again

Choking on my gin

You push ’til I give in

‘Til the loser always wins
Somehow with his beckoning

Bruising with his threads

Confusing what he says

But I won’t live that way

Though I kind of want to anyway

Kind of want to play

With all the pretty and the pure

Well I return to the earth

I return to the dust

No more beauty by the pound

And this I do not trust
‘Cause nothing forgives

Rules and narrow margins

In our lives

It’s rules and narrow margins

But I will slip by
I can’t find the time

I don’t know the future

I couldn’t bring that past back

I waste what little time I have
But I swear I almost touched it

Yet it slipped between my fingers

Sent shivers down my spine

Cut a splinter in my mind
But it wasn’t nothing, again

These rules and narrow margins

But our life

Is rules and narrow margins

But I will slip by
Rules and narrow margins

Rules and narrow margins

But I will slip by
Half Moon Run

Dear Wolf

It has been a while since we had a little chat. Mostly because I’ve been busy as you know because when I am you sneak in to take a bite or two whilst I’m sleeping.

So it’s been a tough time since not working full-time, trying to manage illness and guilt, both playing off against each other. I have begun to realise that you are a black wolf, the wild cousin of the black dog. You affect me both physically and mentally. We are caught in a perpetual cycle of being ill and tired, or being kind to ourselves then being consumed by guilt for not working or not socialising etc.


My biggest frustration at the moment is when you take up residence inside my head. My head which was once sharp, intelligent, and on the ball. It ran a company, studied and managed large projects. It retained countless random facts and remembered everything. Just lately it’s not even been able to remember simple tasks. 

Most of the time this is amusing, like turning up to appointments a whole day early, despite writing the date out a million times over. Then returning the next day joking how efficient I am. I’ve even tried to lock the front door with the remote for my car and not understood why it wouldn’t work. I laughed at the time I organised an entire road trip to Scotland to visit friends and family. Somehow, despite writing everything down meticulously, I managed to book every visit and every hotel a week behind our actual trip. It was organised chaos on a spectacular level. Luckily, everyone saw the funny side and we managed to find hotels in which to stay. Most things work out eventually so I just laugh it off and rearrange.
Other times though, it is plain humiliating. Like not turning up to a huge schools day on a project I worked on for weeks because my brain just wouldn’t function. I cried when I didn’t see the results and felt like I let everyone down. The amount of tickets booked that have to be cancelled and re-booked because I cant match dates up. Keys permanently left in my front door (yes come rob me) because I forget or get confused. I get to work and they talk about my shift tomorrow and I smile because I had completely not seen that shift on the rota but luckily someone always reminds me (so far). Even as I type this on the train from London to Edinburgh, I redden at the fact the train tickets had to be cancelled and re-booked because, despite checking three times over, I booked entirely the wrong dates and days. Then the ticket collector arrives and I squirm because I cannot find the ticket I was holding just 3 minutes before. It’s humiliating and I can laugh most of the time, but as someone who was so good at life before I feel so stupid now.
The humiliation that has taken me sliding down every rung of the ladder and smashed my face on every step. I still try to see the funny side and always will. 
So Wolf, this week has been one of continuous humiliation, of which I’ll continue my frustrations in my next letter.
At the moment dear Wolfy, I ask that please can you leave my favourite organ – my brain – alone. I’ve always quite liked it and I need it most days…

Disentangle

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You say we were two lives that need to disentangle.

But really some of each other became the other one.

That’s the problem. Where do you stop and I begin?

It’s less un-knotting and more a case of cutting it out.

It’s not like cutting out fat, sugar and carbs for my diet to make myself more attractive.

If I do this then I crave the bad.

Maybe I let a remanent of us remain?

It’s a dangerous game, I binge then purge.

More than that its like something that’s diseased.

You cut the tumour out stop it spreading.

I find rancid places to cut you out.

A surgeon, a butcher, a self-harmer.

I peel the taste buds from my tongue

because they shared a love of flavours,

that only we could understand and create.

A menu bittersweet.

I gauge the black place in my heart.

Like cutting the mould from cheese to preserve the rest.

Yet you always worry there’s some you didn’t remove,

and you’ll end up all bile inside.

I remove objects and reminders from my home.

Like cutting the pieces of a stencil,

to make it make a new pattern.

I like the way it looks better than before.

I cut poisonous people out of my life,

it’s an attempt to make it happier, but really I’m afraid.

Scared of their judgement,

because that’s what I became.

Some cut the story from the paper

in order to remember and celebrate.

But the card from last year which says ‘I’m still glad I’m in love with you’

is better forgotten as a manipulative lie.

I cut the nails from my toes,

to stop gouging out the flash at the sides.

Occasionally I don’t do it straight enough,

those feet that danced together become hot and infected.

I dig at my flesh, open wounds and peel back scabs.

I cut you out of me but I keep forgetting where me ends and you begin.

I bleed a little to prove I’m still alive,

and it’s still possible to hurt.

Maybe I’ll let a small piece stay,

like an inked scar to mark the moment we were one.

Is this violent act self harm self-preservation? Cruel to be kind?

I cut away part of myself to make room for more.

Happy New Year with Bullet Journaling

So last year I made New Year’s resolutions then as you may know ‘life got in the way’. I have a habit of starting things and not finishing them, I carry a lot of guilt about it. Partly it’s my personality and getting excited about the next new shiny thing that comes along, dropping the old boring thing I started. It’s also having multiple chronic illnesses which tend to dump on everything. Oh, and then that life bit, I’m not the luckiest soul and 2016 was an absolute shocker!

So this year I debated on whether I should do the whole resolutions thing again. I thought about making things realistic, or achievable. But that’s just not me, I need to be interested and excited and reach for the sky. The difference is how I react when I come thudding back down to earth.

Last year I dabbled with some Bullet Journaling and wanted to continue with a brand new journal for 2017. For various reasons I’ve always shied away from journaling ing and committing to paper. A Bullet Journal was the ideal balance between a to-do list and a diary for me. I began with a basic journal based on this article and bulletjournal.com.

So on the 1st I made an Amazon list of fancy pens and a new Moleskine notebook, and then realised I was falling into my old habit of overspending. So I raided my art materials and as predicted had lots of beautiful materials already to work with.

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So here is what I did:

  1. I left a page spare at the front for my index/ contents. Every page is numbered in a bullet journal and every entry is logged on this page.IMG_3635.JPG
  2. I turned the page and thought about 2017 and brain dumped all the hopes and needs onto the page. I didn’t limit myself, I just poured my heart out…IMG_3638.JPG
  3. Next I looked at the ‘cloud of words’ and put them into categories. I wrote them as a list then made these into columns on how much time and effort I wanted to put into them. ‘Being secure’ is at the top of my list, unsurprisingly, as at the moment I feel so insecure. I colour coded them so I could later see how much time per week I was dedicating.Processed with VSCO with t1 preset
  4. I took each category and thought about how I could achieve them. Theres lots of cross overs and you’ll see in the pictures one category feeds another.Processed with VSCO with t1 preset
  5. Into my life, which is chaotic at the best of time, I wanted to introduce a routine. So I began with an easy morning routine to follow everyday. I aim to create a bedtime one soon to go with it. 
  6. I then divided the activities from earlier on into my first to-do list of 2017. This I divided into ‘one off tasks’ and ‘repetitive tasks’ that happen daily or weekly.Processed with VSCO with t1 preset
  7. I then added a year planner to be able to see the whole year month by month.Processed with VSCO with t1 preset
  8. Finally I delved into January. One page for the whole month day by day. Then I transferred items from the 2017 to-do list into the monthly one
  9. Finally I drew out the week by week journal and added a key. I also included a space for tracking my health and daily gratitude. My key is the same as the standard bullet journal key
    • X = Task Complete
    • > = Task Migrated
    • < = Task Scheduled
    • o = Event
    • – = Note
    • * = Priority
    • ! = Inspiration
    • Eye = Explore

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  10. It sounds complex and labour intensive, and in a way it is. But I think it’s worth it to have a practical journal that works for me. I already love and treasure my 2016 journal, as painful as the moments were that fed it. 

I know there are many prettier examples out there, but mine is mine and works for me!

Finally I read a chapter today about beginning a new project or learning something new:

‘In the beginner’s mind there are many possibilities, but in an experts there are few.’ Suzuki Roshi in Pema Chodron’s ‘The Places That Scare You’.

Chodron goes onto say that we all begin somewhere and at every stage of learning or activity we should  be ‘open, flexible and kind’. Resolutions should not be absolute but ever shifting guides to help us learn or steer us. Our life is an experiment and we are not born as experts. She concludes:

‘At the end of activity, whether we feel we have succeeded or failed in our intention, we seal the act by thinking of others, of those who are succeeding or failing all over the world. We wish that anything we learned in our experiment could also benefit them.’

So I’ll be doing just that, learning from the process and not judging myself on the results. I will also share this latest adventure with you…

#SeekingBeauty

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Right now I’m no words all emotion. I’m genuinely 💔  for America (and the rest of the world). We are a global community and need to extend our love beyond it’s borders.

My dear friend Beth @wisewordsfest posted her son’s wise words: “If we all stand close to the people that are unkind then they’ll learn from us how to be kind. If we are all a long way away they will never see that being kind works better” – he’s 5 going on a 105 in wisdom.

There’s so much truth and hope in his words. So let’s all take stock and breathe. We need baby steps to figure out this crisis on humanity. As part of my recent breakthrough in recovery I started using the #seekingbeauty. Finding small and beautiful sights and moments in the day. Please use it too and share all these tiny things that make the world a better place in the comments below or with me on instagram. If you use the # or tag me I may share a few of my faves in a future blog post.

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