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A Introduction

Parenting is far from easy, this much is fact.  But then you add in complications.  That said I guess I will start at the beginning so you have a rough idea whom I am, my family is, n why this blog has come to me.

May 2012, yes that long ago I did a pregnancy test, I remember it vividly sat in the bathroom of a high street department store, peeing on a stick, and then waiting, the wait that appeared to take an eternity, whilst not the most glamorous of settings it served its intended purpose BUT their was a issue, I am legally blind, have been since March 2010.  I couldn’t see a line let alone two on said test, so ended up Whatsapping a photo of said test to a friend who knows whom she is and asking her what she could see!  The outcome being those 2 lines are now a human called Jemima who will be 6 years young in January.

That is the crux: now to the more complex aspects of why I have opted to set up a blog.

I am many things yet nothing, I am someone yet something, I live with and deal with a lot, far more than many actually could or try to comprehend and that impacts on every element of my being.

I am a solo parent, all be it dating an incredible human called Chris.  

I am a human of lived experience, which includes but doesn’t just include as to list all would bore you to tears n pain my hands to type:

Bipolar Disorder

Complex Post Traumatic Stress Disorder

Fibromialgia

ME

and have I mentioned I am blind. 

Alongside all this I also happen to be Gender Fluid, Pansexual and Jewish.

Whilst this blog will cover a lot including my day to day life, it may also let you the reader into darker aspects of my being, as earlier this year I was raped twice in 6 days by someone whom was at the time a friend, his actions resulted in me loosing my Mental Wealth and ending up in a dark hole of Mental Illness once more.  I am now left failed by the system as have had the police tell me due too lack of witnesses and or CCTV they can’t take the case Luther, no support from the Community Mental Health Trust ie NHS I am having to self fund private Trauma Therapy – if you  can spare anything itd mean a lot
https://www.gofundme.com/continuing-mental-wealth

So settle down, take a seat, and come on a journey as I attempt to process my head via the medium of blogging

Chris holding Jemima and then me next to them taken at The Deep during October 2018 Half Term
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Medication (or lack of)

So, yesterday ICS (Intensive Care Service) were supposed to bring me more medication at noon. It is now nearly 2pm the next day so 3 doses of medication missed.

The Psychiatrist whom came out for the planned visit told me “as you are on 2 controlled drugs issued by us their wasn’t anyone else around to sign them out so someone will bring them later today”. Ok fair enough.

Fast forward to 8pm and a good worker who has been phenomenal is on the phone informing me shehas searched not only their building but the one next door and no sign of any medication for me and someone will flag it in the meeting this morning and Il get a call back around 11am.

11am came n went so I rung them at 1pm, nearly a hour ago, they are now going to phone me back so sat waiting for pharmacy to bring general meds and ICS to bring 3 different ones.

Who says being a mental health service user isn’t rock and roll!

But it does ask the question where are the meds that the shrink was supposed to bring, where did they go?

Easter Break (catch up)

It was beautiful, we were awake at 430am, left Leeds at 5am for Great Yarmouth to meet up with Chris (my partner) 2 girls from his previous relationship, his parents, his sister, her husband and their 2 girls. So all 11 of us had a wonderful time on the beach and in the arcades, laughing and joking enjoying ourselves living life as it should be making memories as a family.

all 11 of us
Left to Right, Phil (Chris’ dad) Margaret (Chris’ mum) Raf (bro in law) LeiLei on his knee, Chris, me sat on his knee, Nancy, Fiona in front, Jemima (my 6 year old), Maya and Claire (sis in law)

Love Yet Hate Disability

I love yet hate disability.

Bit of a bold statement to make you may think, as what is their to love about a world not geared up for those of us who fail to see as the sighted world can and does?

Thanks I guess to the severity of my KC I associate more as someone who is blind in a once sighted world, but take away the KC and I am still disabled due to Fibromialgia and ME not to mention surviving several mental illnesses.

Take away the battles I face, be it magnifying iwth a 20x mirror to do make up, or a hobble holding 2 banisters to safely get down the stairs on a morning to make my daughter breakfast, or battling deliberating anxiety just to do the school run, would I be me?

whilst disability doesn’t define me, it is often the first thing people notice about me is a cane in my hand n wondering why iv a slight limp, struggle with eye contact and appear to be “away with the fairies” wrapped in my internal world to protect me from the judgement of the sighted, able bodied, sane headed views and perceptions or should that be misconceptions of those whov no idea just how much energy it takes to function, to even type this post.

Yet being disabled has its perks, queue jumping at theme parks, 2 for 1 at the cinema and live music, been able to get upgrades on flights, front row seats to plays my daughter does at school and plenty more.

Disability is what you make of it, after all as someone famous once said “the only disability in life is a bad attitude” which in turn makes me question and ponder which parts of me and intrinsic, which are due to the cards life dealt to me and which would I not be me if I didn’t live with. Yes at times it gets me down and frustrates the hell out of me, but for the most of the time, watch out world I might be disabled but damn it has opened my eyes far more than many would realise n given me a deeper level of empathy than many would comprehend.

Live life, enjoy it, learn from the obstacles and remember you are able to educate through experience and that is what matters, if you don’t learn from it how can you expect others to comprehend how it is for you n those like you?

Psychosis & Me

No idea how to phrase this blog, what to say or if it will even make any sense? so going to type and just hope for the best.

About 4-5 weeks ago Chris (my partner) became concerned for me, if honest I was worried for me, walls were moving and my head was loud and noisy, congested, nothing made sense, a sentence was unable to be followed without me forgetting simple words, fibro fog it wasn’t and dissociation it wasn’t this was new it was scary in fact it was terrifying.

My movements were random, Id be transfixed anywhere but making eye contact, I couldn’t cos then my world would be exposed, but what would happen if it was? Sleep was my friend and place of solace but was hard to achieve,

Somehow and I don’t know how Chris got me to A&E to see the duty psych team who confirmed it was a Psychotic Break/Psychosis. this was a new label for already failing mind that had previously given multiple diagnoses.

They wanted to admit me, but no beds, so care in the community in the form of the home treatment team or ICS, I was paralysed with fear and paranoid at best. Everything moving, nothing staying still.

I started on some new medication, that I hadn’t any prior experience of other than friends taking it, so Haldol it was. After 3 days of taking them I was asked if they helped, and I was honest and said not yet so they got stopped, that was not a good move as ended up with further symptoms louder voices and more moving walls and other visual hallucinations it was not a nice place and resulted in self injury two weeks in succession and ambulances called on me both times because I was literally away with the fairies unable to consent to treatment and with reflection I am glad those who called them called them.

Today as I blog I am 16 days clean of self injury it is not the 13 years and 1 month and couple of days I had achieved before I had a breakdown last year but it is a start.

We are fortunate as a family to have some incredible friends whom had Mima last week on school days and different friends who had her for Shabbos, so we had her home Saturday night before she went back to a friends where she stayed till Tuesday. Not easy to admit I was in no state to parent my own daughter as the fortnight or so prior to that she had been staying with my parents but they were on holiday for mums birthday, just wasn’t in the headspace and I was too volatile to be in control and scared myself rigid with paranoia so was far safer to have the small taken care of.

I have always said I am fortunate to have my village of humans, whom when needed mobilise and support, that is a blessing, I know I am fortunate and not all whom are mentally unwell and have physical health needs like myself do not have that village, but my village thank you all for being you and helping me raise an incredible human, who is a blessing not only to me but the world at large.

I am still under the care of ICS, the psychosis is slowly calming and voices not as loud n walls have stopped for now at least from whirling and other things from being in my already limited vision.

Thank you Chris for remaining by my side and not running when the tough got well tough, you are my rock and give me reason to keep fighting to reclaim my mental wealth, it is not a easy ride but with you by my side it is a hell of a lot easier than itd be if I was facing it alone.

Photo of Mima recently dressed as Matilda for School when it was Purim

Hair Got Dyed Last Week

For the past 3ish years my hair has been various blues, purples n pinks but last week I got bored.

Chris kindly had a few spare spoons so bleached my hair then added a mix of the shades Fire and Tangerine by a company called Directions once the bleach was out n the result is incredible

So bright n vibrant

Here is a photo

Well ok it is a collage of different views of my hair.

We deliberately avoided my roots as scalp still recovering from the burns it suffered just before Christmas (2018) from a salon in the city centre who still wont respond to my complaint n have blocked me on Facebook n ignore my phone calls with excuse after excuse why the manager can’t take my call yet had no qualms when inflicting said issues to me pre Xmas time.

I will try them again this week n if again they fail to respond il once more try hold them to account online n if that fails once Iv regained some spoons go in in person n rip them a new one in person!

In the meantime Chris is my safe human n wish he knew just how safe even at nearly 5am he enables me to feel; knowing he cares unconditionally is worth far more than I can express and explain in this blog n as he said a few hours ago “we are a team n will get through what life throws at us as a team”