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?

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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”

I Said No!

I am a lover of live music, it makes me come alive, enables me a safe outlet to my emotions and enables me to feel.

But on Saturday I said NO.

A couple of years ago at Bicon I went to a workshop which to this day is probably the most profound workshop I have attended at Bicon as it was on learning to say no and that it is ok to say no to things and people just have to well deal with the fact you have said no and respect it.

The tickets for this gig were booked a year ago with a good friend, but the gig ended up rescheduled.

I spent the majority of last week in a bad place mentally and physically my body didn’t know if it was coming or going with pain levels and my head was fragile to say the least. Avoided self injury as Chris was home from work for the week, ironically signed off with stress and exhaustion but spent most the week looking out for me as I was a mess.

As it got closer to Saturday my anxiety intensified, but on Thursday I think it was I bit the bullet, sent a text to the friend I was meant to go to the gig with and simply said “am so sorry but going to have to bail as not up to it, and as the tickets are in my name and non transferable unfortunately will mean you can no longer attend the gig, hope you wont be mad at me”. Said friend didn’t seem bothered either way, at least that was the impression I got from his reply to my message.

I feel guilty buying tickets for a gig I never made it to but on balance know it is ok to say no to things even when they’re things I have looked forward to as I can’t put a price or value to my health and that matters far more than music. Their will always be another gig but they’re is only one attempt at health.

It is not easy to say no, it is harder to hear it from someone at times, but it is worth putting yourself first as you matter and to hell with the consequences as you are number one no one else.

Side note Bicon 2019 is booked and I CAN’T WAIT FOR MY 4 DAYS OF HUMANS WHO ACTUALLY GET ME AND I DON’T HAVE TO MASK ANYTHING COS BICON HUMANS ARE THE BEST HUMANS I HAVE COME ACROSS IN LIFE

Why Today Anxiety?

[yesterday Jemima turned 6 photo of her at dinner last night blowing a candle out on her cake]

Mental Illness you are a bastard; it is 8am my alarm is set for 9am yet for the last 3 hours uv been hyper vigilant of everything which culminated in a panic attack!

Fuck you! Mental Illness today is Mima’s party with some of her close friends I refuse to allow you the power to ruin yet more what should be happy times for us as a family!

Please just allow me this day to enable I remember for the right reasons all the fun Jemima and her friends have and don’t steal from me more as you have previously

Titleless Poem Written at 430am 24 January 2019

Nameless Poem I wrote at 430am and read during the training today:

Slipping through the shadows of yesteryear,
emotions heightened and senses overwhelmed.
Whomever said “the past can no longer harm” is clearly unfamiliar with the paralysation and excruciating pain of a body memory
Not to mention the fragility of when lines blur, and worlds collide.

“Live and let live, try move on”
Far too easy to say by you, 
when my head stutters and stumbles whilst I fumble to attempt to live let alone try to move on,
Knowing a high is long overdue but then inevitable crash will occur,
Determined, it wont result in backward steps

this journey is emotional, irrational, anxiety provoking, physically fatiguing,
But I must continue to hobble if for no other reason that 
I survived it all at the time when it occurred,
Body memories do cause pain,
but negligible to all caused at the time,

I might be perceived as brave, strong,
battered and bruised
and this might be me,
Yet I know before you speak,
I must keep speaking out ,
when my brain enables me to remember
as I long to reclaim life once more

Just so you can wait and watch in awe, as soon Il be ready,
to take all by storm

Well That Was Not To Be

So, yeah um that was shit. Actually shit has a purpose n that wasn’t.

Went to view a 2 bed ground floor flat, except yeah it smelt like damp, and someone had died in it was vile! mould but no idea where from. Needs flooring, needs a modernisation to kitchen and bathroom urgently, both bedrooms and living room are vastly smaller than here, BUT it has a garden.

I am not safe here, am yet to spend a night here along with Mima haven’t since the end of May n as it is my anxiety is sky high as Chris has to work nights tomoro (tues, wed n thurs) this week n I only found out today, so dread is filling me already.

Why is renting in LS17 unachievable privately and in turn am penalised due to being long term disabled n thus have to rely on benefits to pay rent, which most non housing association properties wont accept, not to mention the lack of housing association properties available in LS17 that are fit to purpose for our needs. Yet another reminder that I feel like I have failed, yes I did the stereotypical things of get married (And divorced) got a degree, had a child but now I have the child, I have the degree, yes I have a fit for purpose roof over my head with ample space but not a roof that makes me feel safe

Id love to just up and move somewhere new start afresh, total clean state BUT Jemima is happy, she has friends (although cept a select few playdates are rare) she is in a good school at which she is thriving in all areas

To think a year ago if ud told me how severe and enduring my mental ill health would be and it would return with such a bang id have thought you were the crazy one not me, is another reminder that it is in 4 months time a year since this nightmare begun and yet he still has the power and control, due to negligence n mass failings from the system letting me down.

Anger isn’t right for how I feel, nor is abandoned, nor is upset, nor is hurt, overwhelmed engulfed, trapped, caged, freedom and liberty removed, merely functioning but putting a smile on my face as that is what is expected of me as a parent, when in reality I need to curl up be held and cry,

I need ground floor, I need it for my health long term, but I need space for a child who is soon to be 6 and only going to get bigger not smaller.

Thanks Mel for coming with n dealing with the elephant in the room with me. x