It occurred to me recently that had I ever followed through with my invention I may be rolling in it by now. I know I don’t seem like high powered entrepreneur, but I’ve actually had a few amazing ideas that turned into real money spinners. Join me as trawl through the ideas I should have got a patent for!
The Vajazzle
Yes. Really. Way back in 1999 I came up with that idea. I welcomed a boyfriend back from a trip at Xmas time with a glittery festive shape instead of a landing strip. It was a hit. A mere decade later those damn Essex girls stole my idea and made a mint.
Folding Flats
You know those clever little ballet flats that fold into a tiny pouch? My best friend and I had that idea in the 90’s too. Sick of walking around barefoot holding our heels after a night out we drunkenly came up with fold away shoes. As with most 4am ideas we did no follow through. A few years later some other more committed bugger actually made them. Another money making opportunity missed.
Nail Art
Oh I know, this seems unlikely. It’s still true. I’ve been painting designs on my finger nails since my early teens. Granted, I wasn’t always good at it, but I was absolutely doing it before it was a thing. My little sister even got in on the act way before any professional salons started offering it. We were trailblazers. These days we both pull off amazing nails, but other folks are raking in the cash.
Armery
In the early 2010’s Mary Portas Lauched her Armery collab with Charnos (many brands have had similar designs since). She claimed it was her revolutionary idea, sleeves that could be worn under anything for women who didn’t want bare arms. Well, once again, I beg to differ. Portas was not the first to think this up. Myself & many other self harmers had been taking scissors to tights to fashion an identical product forever. Necessity is the mother of invention. Hiding the tell tale signs of our terrible secret had us innovating long before Mary. It’s pity some of us didn’t get together and launch the idea.
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As I said in my previous post, I have been on the struggle bus recently. My stupid body has been making it difficult for me to get a whole bunch of things done. This has left me clinging even tighter to the things that I can master. Since one of things also offers an opportunity to sprinkle a lot festive spirit, I have been diving right into it. Thus, I give you even more xmassy nails.
I did this manicure at around 3am because pain woke me up & couldn’t get to sleep. I was exhausted and so the design is fairly random. Still pretty jolly!
Frosty White – Marks & Spencer Everything Else – Barry M
Next up was was an icy blue set. I’ve been trying to get snow flakes right for the last two christmases. I think this year I finally nailed it. Do you agree?
Barry M
I’m currently sporting this lovely glittery design. Another mix & match inspired by various festive bits. I like them, but have managed to break one nail & chip another already. The brushes will be coming out again tomorrow.
Frosty White – Marks & Spencer Everything Else – Barry M
Bronan remains entirely struggle free. Oh to be a cat.
It’s another gloomy Sunday afternoon. It’s drizzling outside & the day’s main occupation is emptying my over stuffed washing basket. It’s not a terrible day. Just routinely tedious.
It would merely be one more underwhelming day if it weren’t for the lightening crack in my pelvis. The shock that spreads to my back and sinks into my thighs. A monthly reminder. A living memory who’s intensity at times pushes the familiar into trigger territory. What rushes in full colour into my brain? Blood
Blood in my pants
Blood on the floor
Blood on my thighs
Blood in the bath
Blood on surgical gloves
Blood on a hospital chair
A supercut of blood. Staining an array of places I’ve called home, polluting clothing & towels. I can feel the rush of blood in my ears as various medical professionals tell me things I never want to hear. The heat, the rhythmic contractions, the fear rush me from yesteryears.
I know all the tricks. I breathe. I describe my surroundings in detail. I repeat ‘I’m ok’ over & over & over. I pet my cat; hear his purrs, feel his super soft fur. I plant my feet firmly & watch my toes wriggle on solid ground. I’m here. I’m safe. I’m in this room. And I am. For long enough to switch reels.
I’ve clicked over to a different familiar. My heart is pounding & adrenaline crackles. My body gets there a fraction before the idea fully forms. It’s too late to call halt. The only thing that ever stopped the bloody horror is more blood. Controlled, purposeful blood. I can almost smell the metallic rapids.
No matter how many days, weeks, months go by without splitting my skin the connections remain. My broken brain leaps from trauma to maladaptive solution with confidence. I must convince myself all over again that blood isn’t the answer.
Don’t find that box
Don’t open it
Don’t slip a fresh blade on the handle
Don’t find the perfect spot
Don’t drive the scalpel in
Don’t let blood trickle & flow.
I know this trick too. Sheer force of will. I will not. I can not. I do not.
I have not for so long. I’m ‘recovered’. No one told the deep dark core of me. That fucker still yearns for it. Not every day. Maybe even not all that often, but I know it’s there. I know how fast the urge can rise. And, oh, I know how hard it is to continue saying no.
I can’t say with any certainty that these thoughts will ever completely leave. I’m like an alcoholic who remembers the relief of the first hurried gulp. Knowing that carnage follows is enough to stop me raising the glass. I just don’t think it’ll ever kill impulse.
I’m good. My life goes on. Tomorrow could be wonderful. I’m tired, though. It would be nice not to have to fight so hard.
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It recently came to my attention that Joni Mitchell’s masterpiece, Blue is 50 years old. I find it incredible that words written half a century ago still cut right to the heart of me. I discovered Joni when I was around 12 and 28 years later I still love slipping into the blue. This week I have found myself listening to one song in particular on repeat. It’s Baby Loss Awareness week, as I see others share their own losses I find comfort in Little Green.
Little Green is perhaps the most perfect song ever written. I didn’t know precisely what it was about on first listen but I still got it. It still wrapped me in its magical sadness & hope. Green immediately struck me as a beautiful name for a girl. I decided there & then that should I birth a girl, I would indeed call her Green.
I’ve been listening to that song since my teens. Dreaming of the tiny bud who would be my Green. In the passing years I have learned the true meaning of the song, talked to the Green nestled inside me & discovered the reality of loss. Joni was writing about a different, but similar grief. Her words remain entwined with my experiences.
When I dream of a daughter she is a gypsy dancer. All tangled red hair & high spirits. She likes the scent of pine trees & bracing herself against a strong, cold wind. She’s quieter than me, but chatters when excited. I read her everything I loved as a child. Take her to the places that made me feel big things. Her childhood is filled with standing stones & patterned tights & Joan Lingard books & seaside air & empowering women & red liquorice. She is exhausting, exhilarating & exquisite.
When I wake she is a girl in a song. A fantasy my mind summoned; fuelled by 70’s folk poetry and my deepest longing. Listening now is a sweet agony. Pressing my sorest spot because I can’t resist the beauty of it all. The intro wrapping me in the blanket my babies never had. The lyrics bringing the sketches in my head to life.
I’m glad we’re beginning to open up about pregnancy & baby loss. I hope others won’t have to spend so much time alone in their heads with their babies. It helps to talk about losses. To give solidity to those tiny unlived lives. It is such an enormous relief to have the world acknowledge our children.
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It’s 2.35am. I’ve been alerted via social media posts that it’s World Mental Health Day. I feel bound to write something on the topic. However, I’m a little stuck on exactly what that should be.
We’re probably all feeling stuck in one way or another. Nearly 2 years into a pandemic that has changed everything and nothing at the same time. It is surreal to learn that global crisis is status quo for the capitalist monster. It shouldn’t really have been a surprise, but somehow I thought perhaps we might find a way to rise. We haven’t. The incredibly rich continue to suck the (literal) life out of almost everyone else. Those already in the worst positions suffer the most. The rest of us get sick, grieve, sacrifice, struggle and still find ways to pay the rent. It’s A LOT. Even folk with the most robust mental health have floundered. Anyone who was shaky pre Covid probably found the rigours of a plague made them increasingly sinkable.
I’ve found myself in and out of a strange no man’s land. Not ok, but entirely unable to properly articulate the details of that not okness. I’m generally a bit lost. I feel like the world is crumbling around me. We’re witnessing tragedy after tragedy. Death & destruction abound. Our leaders seemingly with no more clue than the rest of us. Politicians still scrambling for money & power as the bodies pile up. Your boss still wants their 35hrs, tabloids still print trash & people are still sleeping on the streets. None of it makes sense.
We’ve already started packaging the accumulated trauma of Covid as ‘burn out’. People write peppy pieces on how to beat burnout with an aim of getting everyone back to bloody work. Back to the commute & the offices even though people are still dying every day. Why? Because despite working from home actually proving to be more productive the higher ups want you back where they can see you. No comfort for the workers. The Tory government continues to grind their boots on our necks too. Cut universal credit amongst Covid & Brexit insanity. Carry on fucking the NHS and refugees and hungry children. Then they film the PM doing puns of their ridiculous slogan and pretend that’s a solution. I’m surprised anyone is still sane.
It’s not over. No definite end in sight. Always another calamity over the next hill & zero provision for help. No extra money for mental health services. Accessing even the most basic support is more difficult than ever. All the people who were already living on a knife edge haven’t gone anywhere. The problem has just multiplied.
*
So, this year I’ll repeat what I’ve been saying forever. Awareness is great, but to treat mental illness we need money and a different ideology. I can’t see any change in NHS mental health funding or direction until there is a huge change in Downing St. Not merely a change of party, but a shift in the will of power. My heart sinks when I think about how long that could take.
In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.
It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.
So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.
Travel
I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:
Hospital App – £11.80
Visit Bestie – £11.30
Vet – £8.60
Pick up Bronan’s Prescription- £8.80
Post Office – £8.60
Work Meeting – £22
Weekly Total – £71.10
Pain Relief
Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.
Heat Pads – £5 per 3 pack.
Tens Machine – £65
Tens Pads – £5 per 10.
Long Hot Water Bottle – £20
Microwaveable Heat Pouch – £15
Dragon Balm – £2.50 a jar.
Lidocaine Patches – £60 per 10 pack.
Vape – £35
Cbd Oil – £15 per 50ml.
Freeze Spray – £1
Paracetamol – 56p per 12
Massage – £70 per 60 mins.
Kinesiology Tape – £5.50
Yoga Mat – £20
Foam Roller – £12
Disability Aids
I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.
Walking Stick Ferrule – £5
Easi Reach – £10.99
Easy Open Food Containers – £25
Jar Opener – £5.50
Easy Veg Chopper – £20
Multi Bottle Opener – £5
Auto Can Opener – £15
Lotion Aplicator – £8
Walking Stick Seat – £25
Sock/Tights Aid – £8
Bra Angel – £17
Hook/Zipper Assist – £6
Suction Grab Handles – £28
Shower Seat – £35
Wearable Tens Holder – £20
Press on Lights – £10 per 3 pack.
Services
There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.
Grass Cutting – £45
Hedge Cutting – £60
Weeding & Garden Tidying – £100
Wheelie Bin Cleaning – £8
Window Cleanimg – £8
Bathroom & Kitchen Deep Clean – £175
On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.
Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.
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For August my charity of the month donation was a no brainer. Priti Patel’s deranged plans to criminalise asylum seekers entering the UK by crossing the channel has highlighted the amazing work done by the RNLI.
If you aren’t aware of their work. Lifeboats provide a 24hr rescue service for ANYONE who gets in trouble at sea. They also provide lots of excellent sea safety education, flood rescue & international work with people most as risk of drowning. They are voluntary charity organisation who risk their own safety to save others.
The Tories quest to criminalise rescuing asylum seekers at sea is abhorrent. It also has significant implications for RNLI volunteers who’s policy is to rescue any person in trouble without judgement. The organisations has received harassment from right wing anti immigrant groups. The idea that we should ask questions before saving someone from drowning is repugnant. Lifeboat stations need our support now more than ever. If you can please make a donation here.
If you would like to make a donation & stand a chance of winning a unique piece of art l have a tip for you. The lovely & talented roseylivesonaboat is running a raffle in aid of RNLI. You can win lifeboat themed needle point art. Full detail are in her latest post.
Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.
That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.
As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.
And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.
My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.
That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.
When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.
It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.
I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.
The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.
It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.
This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.
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For June’s charity donation I decided to give directly to people requiring support. These are some requests that came up in my social media time lines that tugged at my heart strings. There are too many people struggling to access too many essentials, so I know you are also see hundreds of deserving causes regularly. Please help if you can.
Food and essentials for Ex Foster Kids Children who age out the foster system often have very little or no support. You can donate to help provide essentials.
Every now & again I realise that I kind of hate all the latest ‘must haves’. Summer 21 is definitely one of those moments. Thus, I invite you to join me as I trash all the things I really don’t want.
Big Collars
Everywhere I look folk are adding massive collars to everything they own. I can’t stand it. It’s twee in the worst possible way. They’re the ugly offspring of 80’s maternity & flower girl fashion. I feel especially nauseous when I see someone sporting a large doily style collar on a pastel knit. It has to stop. Please.
Nope
Pampas Grass
Is that even the correct name? It’s that awful fluffy stuff that keeps turning up in floral arrangements. Usually accompanied by weird dusky pink dried flowers. It’s another 80’s revival that we should have left to rot. The fluff gets everywhere, they always flop & there’s that urban legend about swinging. I’ll stick to fresh blooms, thanks.
Nope
Hankie Tops
I’m usually all for a 90’s throwback. It was a bloody good decade with some excellent fashion. Hankie tops, however, were awful then & even worse now. I still have nightmares about the lemon yellow gingham hankie top I struggled to keep my boobs in on a second date in 1998. I can’t forgive the pitiable piece of fabric masquerading as a garment.
Candlelit Concert
In theory, I actually love this idea. The first candlelit concert I saw advertised was Vivaldi’s Four Seasons in a beautiful theatre. I could see the appeal. It must have been a success because now there is a candle lit EVERYTHING. Abba, Disney, Daft Punk, ballet (is that safe?), songs of Barry Manilo! I’m out.
Bare Midriff Belt
I couldn’t tolerate Carrie Bradshaw belting her belly button. So, I’m definitely not going to find it charming this time around. Can’t we ever learn from our mistakes?
Nope & Nope
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Something in the way she moves... 
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