Boarding the Social Care Merry-go-round

Hello again ūüôā !

Please note that I wrote this post several weeks ago following a social care assessment by a social worker that had taken more than a year to come about following an urgent referral. Lots has happened, and changed, since then as more recent posts evidence, but I wanted to post this to update this part of the story and so that I can next post a more brief update on the social care front.

This is an intense post … very raw

*** TRIGGER WARNING – this post contains mention of suicidal ideation and brief description of planned method – but with an optimistic outcome, I promise. It also contains a sweary moment.***

I’m afraid to get too excited. I’m scared to hope until it’s all been verified and approved. And yet somewhere inside me it’s bubbling away, small but unbridled, fizzy excitement.

It’s keeping me on¬†top of a precipice, by keeping hope alive.

Since my collapse in mid February, it’s been quite the job to stay alive … too many times I’ve almost tumbled over the edge.

****

Having experienced significant trauma and having been abused for many years, I’ve experienced suicidal feelings on and off since my late teens – that’s almost three decades – due in part to mental illness caused by the trauma and abuse. They call that being ‘passively suicidal’, which sounds rather like there’s some relaxed, chilled vibes going on. In actual fact, feeling suicidal, regardless of whether you’ve reached the ‘actively suicidal’ stage of making and seeking to execute suicide plans, can be HORRIFIC.

Sometimes suicidal despair is less about mental illness and more a human, albeit extreme, reaction to devastating circumstances. It’s often a desire to end the most terrible pain, and to end life appears the only way to do that.

I’ve been actively suicidal around four times in all those years. I’ve made only one actual attempt to end my life (a survived attempt is known as a parasuicide) and that was a little over a decade ago. At that time I was very mentally unwell and poorly supported as I tried to come to terms with the recent realisation¬†that the family members to whom I was devoted, hadn’t loved me at all and had sought only to harm me. Furthermore, that estrangement from them – what remained of my family – was the only way forward.

Since then¬†I’ve become far less mentally unwell on account of a lot of psychotherapy and a lot of hard work. I’m lucky that’s worked for me, it’s not the same for everyone. Mental illness can be as individual and as complex as those who experience it. I’ve also¬†become¬†extremely well practised at keeping myself safe even in extreme circumstances. I know that if I can’t keep myself safe, that that’s an¬†emergency situation. The difficulty comes when the¬†system does not have the resources to provide appropriate support.

In July last year I set up a noose in my flat, carefully balanced I tested it to ensure that it was fit for purpose. As, during this test, I settled it around my neck, the phone rang suddenly – loud and shrill. I started and almost fell off the object on which I stood, and which ultimately I was planning to kick away …¬†It’s not funny, it’s really not, but still I find myself laughing now. You could not make it up.

I could just have gone with it but instead I fought to right myself and hurried to¬†the phone. My phone rarely rings. I answered to hear the voice of someone who has rarely called and never without being asked to do so. I do not believe in divine intervention but the interruption gave me sufficient pause. The ‘spark’, as I think of it, inside me that’s kept me alive through everything¬†yelled … Do not fucking extinguish me. I am not done yet. It’s pretty difficult to ignore ol’ ‘Sparky’.

That said, in spite of the urge to fight on, I knew that I was under a great deal of pressure in very difficult circumstances. I knew that I was losing the capacity to keep fighting by myself. I knew to ask for help and I did, but it didn’t come. I had my first ever direct experience then of a mental health assessment – carried out in the large and somewhat forbidding psychiatric hospital in the city where I live. I was found to be ‘too well’ for inpatient care (much to my relief, I admit) but also for the support of the community based Intensive Home Treatment Team or ‘crisis team’. I was told that there was nothing else. The assessing doctor did suggest that I try volunteering as a means to ‘occupy myself’. The irony that I’d spent the previous four years volunteering, first for two years in that very hospital, setting up and running a not inconsiderable project by myself supporting ex and current patients, and a further two years working with a mental health charity, was not lost on me. I didn’t need to be occupied, I was more than capable of doing that for myself, sometimes to excess in a bid to keep myself going. I needed some practical and emotional support, for I had none.

***

In recent years, a complex set of circumstances including marriage breakdown and later divorce, two major bereavements, unexpected severe financial difficulty leaving me unable to afford to heat my home and dependent on food bank for three months and in fear of losing the roof over my head, had threatened my mental health again.

Added to that, was the fact that I was driving myself into the ground by working my socks off to get myself through all of this and onto a better future. I drove myself to breaking point. Support did materialise for six months, in the shape of my GP, a housing support officer and a friend. I made huge strides and began to thrive. Then my GP relocated, in the same month my housing support worker was withdraw overnight … the service is limited due to budget constraints.

By this time, a little over a year ago, I’d begun experiencing flashbacks¬†to abuse of which I’d previously had no memory. I experienced intense anxiety that I hadn’t felt in years, and I also began to realise that dissociation had likely long been some part of my experience. The friend who been supportive, began to back off at this point, seemingly unwillingly to believe in flashbacks and dissociation, because they were outwith her own experience.

It seems as though having finally got out of my marriage, which wasn’t healthy, having some support in place and space to be myself, something unlocked in my mind. I already knew there were some things that I still needed to process in therapy, but I came to realise that there was more than I knew. In addition to the flashbacks and anxiety, it was as though I could suddenly feel the impact of all of the loss that I have experienced, and the attendant grief. That’s everything from the loss of my whole family, through losing my career, close friends and my marriage – all as a result of abuse/trauma, through the loss of the opportunity to have children, and right down to the permanent loss of a¬†significant amount of my hair due to alopecia.

The pain was off the scale and unable to obtain any support despite, even if I do say so myself, valiant efforts, my mental and physical health deteriorated rapidly, until one day in February this year I could do no more and was left with the barest of function.

***

When I moved into my second floor flat a little over two years ago, I could run from the street below up the numerous stairs to my front door, in a one-er. I was EC-STAT-TIC the first time I managed it. I might as well have run the London Marathon … in record time … such was the size of this¬†achievement.

I’ve never been what you’d call ‘sporty’ and, although I love to walk, I couldn’t ever imagine having any desire to run. It took among other things a broken back; the loss of my family, close friends, my career and my hair; a suicide attempt that left me in cardiac arrest, and finally a broken marriage to send me in search of my very own running machine.

My health is a bit wonky these days. I say these days. The wonkiness set in before I was 30 and I’m now approaching 50.

Aside from the umbrella of ‘Complex Trauma’ – which for me includes¬†Post Traumatic Stress Disorder, Depression, an eating disorder and compulsive skin picking known as Dermatillomania; I have several physical conditions¬†for which there is currently no cure. The former is a direct result of my experiences of abuse and trauma.

Lots of bits¬†hurt; bits squirt, leak and splutter. Bits fall out and bits malfunction in such a way as to leave me feeling as though I’ve gone 10 rounds in a centrifuge. Among other things, I can be incontinent, my¬†mobility can be impaired, I experience memory loss, pain disrupts normal function and, when this lot really means business, I cease to function.

I’m great at faking wellness and pretty bad at showing sickness. It kills me to tell you – unless you’re in the same ‘club’ – how bad I’m really feeling. I’ll really try but I’ll skirt, feint and increasingly hesitate. It’ll be like pulling teeth and you’ll probably end up none the wiser.

Right now, I haven’t been able to leave my flat for almost four months and an attempt to run up those stairs would foolhardy to say the least. The treadmill is gathering dust but I still yearn to run.

I’m always going to be limited in some ways by health issues, but careful self management – to be fair, a rigorous regime of physiotherapy, graded exercise, medication, diet, meditation and more – has in the past meant I could make more of my ‘spoons‘. That’s what got me in a position to be able to run a mile several days per week. I don’t mind putting the work in, far from it, but support is necessary to sustain it.

The responsibility of care/support falls first to families, no matter their age, then friends … neighbours … the world and his dog. Social care is not readily provided by the state. Hoops must be conjured, immolated and resurrected before then being jumped¬†through so accurately as to achieve a perfect score.

At the time of writing – popping between this and Twitter as all good writers do (!) – two tweets appeared on my timeline¬†both, although carrying dispiriting messages, suitably illustrate this post.¬†Cue a further frisson of excitement, stirring music, and … and … the … the …THE STARS ARE ALIGNING!

I have to shake myself back to reality. After suicidal depths and isolation, so perpetual as to rival purgatory without the promise of heaven, real¬†hope can send one a tad giddy …

This tweet pictured below is from a psychiatrist working in an NHS Accident and Emergency Department. Whether a real or an ironic example, the message is the same. Resources are very limited, ever more strict criteria is applied to determine who may receive them. People in need can and do slip through the widening cracks in the system. The second tweet contained a link to this article in the Guardian.
Tweet 24 May 2017 to use to illustrate a HSOL blog post

This is not a great time to be vulnerable or disabled. 

After completing the lengthy assessment – in two visits of around 80 minutes each – my newly allocated social worker tells me that she thinks her request for support for me – four hours per week delivered in two hourly sessions – will be approved.

To have real possibility of a support worker or personal assistant (PA) – appropriate, flexible support — dangled, like a diamond encrusted carrot, right before my very eyes,¬†feels like the winning the lotto, the big money, life-changing bucks. But forget that, who needs it?!

I will feel like a millionaire for having won the social care lottery because it will afford me the luxury of being able to do more than survive … and instead to thrive.

 

A look at the BIG plan …

With me, there’s ALWAYS a plan. I discovered Bullet Journalling last year … and was as happy as the proverbial pig in muck/mud/sh*t – however you choose to term it, having discovered a cool system to both simplify and maximise my planning activities!

I was in some pretty deep doo doo at the time and struggling to keep afloat, 2016 being my annus horribilis,¬†but at least I had a ‘customizable and forgiving organization system’ to help me… And one, according to the creators of the system, that will ‘teach you to do more with less,’ surely that’s got to be a goodie for a¬†spoonie?¬†

Tea is oft purported to be the cure for everything. Personally, although I like tea, I think stationery is the answer to everything. A nice new notebook, PENS, lots of lovely PENS, and paper, and labels and stickers too … oh the joy! Give me those and I’ll scribble and doodle my way to a master plan. If you’re a stationery/planner geek, you probably already know the joy of just doing a Google image search for ‘bullet journal’ …

A Bullet Journal is essentially – diary/planner, journal, to do lists, notebook, budget tracker … and anything else you need … in one. For me, a bullet journal keeps me on track but does away with the need for a multitude of ‘systems’, and it’s simplified approach does allow you to ‘do more with less’. Click here for a quick lesson if you want to learn more or start your own.

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Journal Geek-ery right there: Just looking at them makes me smile, I am THAT bad

I hadn’t named this latest plan until it just struck me that I usually do – others have been Operation Self Care and Operation Fight Back –¬†and then I knew that I wanted this one to be called Operation Thrive. I feel a bit emotional having just written that, because thriving means so very much to me. I had a taste of it earlier last year – when I had some support for a time. I survived but I plan to thrive is this blog’s tagline. Thriving is my recovery goal. Abuse recovery to me = thriving. I can’t wave a magic wand and cure my chronic health issues but when I’m living my life to the fullest alongside them, that’ll do me! When I’m thriving I’ll know that I’ve won, that despite all the pain, and grief, and terrible terrible loss, and so much time spent just existing let alone living, I’ll know that I’ve made it. I know that I’m already a winner in that I’m not bitter, and because I’m a good person and I am, by choice. very different to the people who abused me. BUT thriving, that’s the ultimate WIN.

Operation Thrive Рplan initiated 10th June, 2017

PRIORITY 1: 

  • WRITING – finally this is coming top of the list and it’s staying there.
  • Ending isolation and reducing loneliness by increasing connection
  • Reinstating routine and regaining function
  • SELF CARE!
  • Being able to get out of my flat – and then get out and about locally
  • Getting my flat ‘immaculate’ ready for a routine inspection by the landlord’s agent
  • Re-engaging with GP and getting vital health checks done
  • Taking steps to begin to tackle disordered eating
  • Psychotherapy/Trauma therapy – it’s difficult to know where to place this because of difficulties/delays with the provision of it

PRIORITY 2:

  • Starting to rebuild fitness – and taking steps to resume physiotherapy treatment
  • Visiting dentist both to resume my treatment programme to restore my smile devastated by a dental phobia caused by abuse, and also to assess damage caused by latest crisis and create further treatment plan. (Delayed by illness and financial difficulty)
  • Optician – ¬†have overdue eye test and purchase new specs. – also delayed by illness and financial difficulty.
  • P.I.P – make a new application for Personal Independence Payments

PRIORITY 3: – can only be undertaken once a support worker/P.A. is in place (assuming the local authority awards funding)

  • Back onto a calorie counted diet
  • Increased exercise – talking walks and going swimming – and once physiotherapy is complete joining an 10 week exercise management programme for people with disabilities/chronic illness – assuming I can get onto it, if not I’ve got a Plan B ūüôā !
  • Getting out and about beyond my immediate area and support groups
  • Restarting hobbies, building new ones and making new connections – join a choir (September) and an art group

There are sub-categories to some of the above – but you get the gist as it stands! Priority 1 is all now either underway or complete.

Getting back to work is a HUGE goal, but as I am not to try to run before I can walk, for a change, I’ve not yet included it on this plan. Once I’m settled into Priority 3s, I’ll add more!

The bulk of my Bullet Journalling is at the moment centred on ‘Daily Logs’ – a list of what’s happening and what’s to be done on any given day, and daily recovery focused journal entries that I’ve called ‘Recoverlogs’¬†– a term shamelessly snaffled from mental health campaigner and vlogger, Jonny Benjamin. You may have seen the brilliant Channel 4 film¬†Stranger on the Bridge about his own mental health story.

To do lists keep me on track but are also a great motivator. It feels SO good to tick … ‘done’ ! Budgeting goes in there too, shopping lists, ideas, thoughts and plans for blog posts, notes for and on therapy sessions, and so on. This plan is no small undertaking. There is no one working on it with me, no one to oversee it. My social worker is classed as my ‘key worker’ but is only involved with me as far as carrying out a social care assessment and managing the application for funding to pay for some support. My GP doesn’t know the half of it, as there is never enough time to fill him in on all that’s going on for me. I hope there’ll be an opportunity to share the plan with him at our next appointment on 3rd July.

 

 

Silence Is Not Golden

I’m waiting for Bob, the smiley man from the pharmacy, to deliver my weekly package of Fibromyalgia medication. Only he’s not so smiley anymore; instead he looks both disconcerted and slightly disgusted, faced each week as he is now with my shambolic self; undressed, unwashed and sometimes smelly. 

I automatically summon a smile and good manners, but with my increasingly poor dental hygiene and dead-eyed dissociation neither can offer much reassurance. 

I’m unsure as to whether it’s a fear of intruding or an absence of community spirit that prevent him, in recognition. of my dramatic deterioration, asking if I am OK or if I need anything.

Weeks ago I couldn’t have dreamed of answering the door, allowing someone to see me in such a state, with Bob it’s become the norm. 

His deliveries have always taken only a moment or two, perhaps because in this largely ‘permit-only’ zone, he is parked on double yellow lines below, or perhaps his speed merely reflects efficiency. I’d guess his age to be beyond that of average retirement. He has a handsome, healthy appearance and sprints up the stairs to my second floor flat with the ease of a teenager. In the wake of my escalating disarray, he’s shaved seconds off his time. 

I did write for several hours on Sunday and into Monday, working on that significant post, mentioned here. I am trying to tell the story of the past year. It looks as though it’s to be set out in two parts, with the first giving background, context; setting the scene. The second a planned to be a bullet pointed list giving details of each trauma as they came, in rapid fire succession. 

I’d have said perhaps that each bullet left clear entry and exit wounds. They passed through and I carried on, like cinematic villains or monsters that just won’t lie down and die, but continue to advance while riddled with bullet holes. 

Now, I wonder about the impact of those bullets. I see now that they must have torn me apart inside  I knew I had been hit, repeatedly. I didn’t ignore it and I did ask for help … repeatedly … but none came. 

I think I was shattered. I realise I was silenced as surely as though a bullet had sliced through my vocal chords.

Bob has just made his delivery, the door is locked once more. My focus is now solely on completing this piece of writing, catching the words as they flow. 

I know that it feels good to write like this – as I couldn’t for so very long. Writing for me is like receiving a life-giving blood transfusion. I’m not sure I can assess the quality of this writing but it feels very good! Instantly I fear that must mean that it is in fact far from that. Yet it’s as though I’ve tapped into a natural spring that flows with exuberant ease. Clear. Fresh. True. It flows, seemingly without effort, almost certainly without strain. 

It’s as though it has to be written, would write itself if it could, and that I’m merely a conduit. Except I am connected to these words, they are telling my story.

On Sunday the pace of progress was rather more sluggish. The flow murky and stilted, like a tap turned on for the first time after the supply has been turned off, to allow the water company to attend to a burst pipe.The cloudy flow splutters, disgorges a flurry of debris into the sink. The tap-turner’s nose wrinkles in distaste.

I found the writing process increasingly stressful. I couldn’t tap into the feelings associated with the traumatic events of the past year without experiencing increasingly acute distress. I determined to press on feeling that this work was vital, the key to progress. I felt that if I could find the words here then, perhaps, I could find the words out there

With ‘part one’ nigh on complete, I reviewed and edited it until I could take no more. I wanted to publish and see the achievement of at least 50% of the task completed, but something held me back. The words felt forced, although they were not inaccurate, they did not feel true. Perhaps that makes no sense? 

The fog was closing in again. The clearing where I’d stood while I blogged for those few days last week, swallowed up. I was left with only terror and desolation for companions. I imagine their laughter deadened by the cloudy cloak but still perceptible. They roared at my gullibility, my willingness to hope that there might have been a way out. 

I soon as I try to write or speak about the trauma of the past year, the flow becomes stilted and murky, and then it stops. 

I was schooled in silence. As tools of the trade go, it’s pretty essential to an abuser. Without it they must rely on apathy or disbelief on the part of anyone hearing, or else they themselves must rely on the tool of discredit to save their skin. When the reality of my family life was finally disclosed, well into adulthood,  to a locum GP, the only one to act on suspicions, and with the gentle telling that followed that this was abuse and I didn’t have to live like that anymore, I knew. I knew that I had to learn to open up, that to begin to heal I had to tell. I did so. 

So, last year, I kept going, bullet holes and all, until a small event on the 13th of February this year (I’m not superstitious, the date is purely coincidental) became a monumental trigger. 

Having concluded that I should hold off publishing ‘part one’, on Monday this week, an hour before I was due to receive a visit from my advocate I sent a desperate, terror-fuelled email cancelling my appointment. I was and remain petrified of the consequences of speaking out. I’ve lost count of how any times I’ve cancelled in recent weeks. 

All I can say now is that among the traumas of last year was an incident in which I disclosed significant trauma and detail of significant risk to myself to two trusted professionals. I was not believed, and lies were told about me. I was not treated with respect but rather with contempt. I was mocked. I was refused support. I was left sobbing like I’ve never sobbed before, traumatised and feeling dirty in a way that I hadn’t felt since the abuse that occurred within my family.

The whole event had an element of the surreal about it. It was such an appalling abuse of power, a disregard for professional standards and duty of care.so shocking, that it was difficult to take in that it really was happening. To make matters worse the incident happened in my own home, the only safe one I’ve known. 

I don’t know how I’ve managed to write parts of this post. I can feel both shame and terror lurking, waiting to pounce the moment I hit publish. 

I’m clean!¬†

Having changed out of fetid pyjamas, showered and brushed my teeth, I’m back in the realm of daylight and a whiff of fresh air

While I’m happy to be more functioning, the more that I do, be it washing myself, eating, doing chores or whatever, the more  that I’m forced to confront how bad things are for me right now. Uh oh, there goes that guilt again that I spoke of in my last post .. I’m moaning/whining/being pathetic. I should think myself lucky, shut up and get on with it or, at the very least, seek to justify my every thought and action. Ho hum, I’ll try to ignore that.

Yesterday’s second dishwasher load has been unloaded, load number three is on the go and those few items that require handwashing are bathing in hot soapy water. I’ve stripped my bed, organised some paperwork for shredding, rinsed some items for recycling, and dealt with a pile of post.I’ve rested periodically, vital ‘spoonie‘ pacing, to try to avoid crashing and burning. Although, I’m sensing that the more I gather momentum the more I feel an urge to keep going and so resist the need to rest.

I’m now munching on some of last night’s banana loaf. Next I’ll wipe the kitchen work surfaces, do a quick swish and swipe in the bathroom and remake my bed, …then I’ll flop for a bit with BBC Radio iPlayer.

Thursday into Friday 

Good morning ūüôā 

I’m feeling positively breezy this morning but I think I may finally have learned not to get swept along by my need to be positive, and to understand that my current ‘breezy’ is a long way from the ‘breezy norm’. 

Any improvement, however slight, on being locked into the fog of dissociation with only terror and desolation for company is wondrous. That ‘wondrousness’ is  a bit of blighter actually because it can leave me feeling guilty, that things are not so bad after all and that I certainly ought not to be requiring, or even less, seeking any help. 

I grew up believing that I wasn’t suffering at all, despite experiencing appalling trauma and abuse. I notice that as I wrote those words I felt a twinge of guilt that made me cringe. Was it really so appalling? Am I exaggerating? I say that as someone who aged nine witnessed one parent actually trying to murder the other and, while still a child, lost a parent to suicide on my birthday. Those are but two of many more examples that I could give. 

I grew up with that belief partly because these events were given no more significance than a broken fingernail in terms of their impact on me, by those around me. It was also drummed into me that I had it so good and that there were so many people in the world worse off than me. Consequently, I can struggle with the distorted perception that if someone, anyone, is worse off than me then I am not struggling/suffering/in need and should just ‘get on with it’. 

Yesterday, I made and ate a plain omelette,  ran two dishwasher loads – making a sizeable dent in the accumulated kitchen ‘crisis detritus’ – ate some kidney beans with tomato, black pepper and cumin, and, when late yesterday evening hunger was still a problem but food was scarce, a bashed together a banana loaf which, despite being missing a couple of ingredients, turned out to be my tastiest yet. 

I also took the huge step of introducing my oldest friend to this blog, *waves hello to her*, and thoroughly enjoyed watching the final of the Great Pottery Throwdown. Although, I’ll be experiencing withdrawal symptoms now it and the Great Big Painting Challenge have both concluded this week! 

Today I will be focused on cleaning myself up (a far greater task than it may sound) and receiving a supermarket delivery of some groceries this evening. I hope to work on a significant blog post. It may prove challenging to compose but I believe the benefits of doing so will outweigh the challenges.