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.
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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.

 

Heart REset on Living + 14 days

Fourteen days on from the day that my high school ‘bestie’s’ unexpected appearance on my doorstep tethered me to life, a lot has happened.

I’ve made a lot of progress away from the suicidal depths and towards my goal of thriving. I’ve already written about my adventures in admin. I *think* I’m winning so far but there’s more to do!

Here’s what I’ve done so far. I’ll give you a bullet list, I’m going to write another post, perhaps tomorrow, about MY BIG PLAN. ¬†With me, there is ALWAYS a plan … even if at the worst of times, it’s only a suicide plan. I thrive on planning, targets and goals, proactivity and productivity. Did I ever mention that I’m a wee bit driven …

Perhaps having to make the best of terrible circumstances when I was younger is what helps me to capitalise on every scrap of hope, opportunity or potential. Regardless of the reason I’m very grateful for that capacity.

  • I’ve showered 13 out of those 14 days.
  • I’ve been out twice to take out my rubbish, twice to visit my GP surgery and once to go to the hospital – having vital physical health checks. Bearing in mind that prior to this I had been completely housebound for four months.
  • I’ve started on the road to rebuilding my fitness and stuck to my plan for that.
  • Progress is ongoing following my assessment for social care (a personal assistant for four hours per week) – I’ll blog separately about that.
  • I’ve set the ball rolling for a return to the physiotherapy treatment I was about to begin when the crisis that left me housebound hit in February. I may not be allowed to resume – a funding issue – but it won’t be for the want of trying.
  • My eating is improving – another more in a separate post for that!
  • I’ve been keeping in touch with friends via email and social media and they are keeping in touch with me. I feel that I’m rebuilding some old friendships and developing new ones – if you fall into either category and agree, do let me know, my friendship confidence is still a little shaky :-).
  • Another dear friend stepped up two weeks ago, asking how she could help, her message moved me to tears. It’s gratitude, she said, for a “normal” life. This is because of the research I did that helped to crack the conundrum of the rare condition that was devastating her life. She said, “I have never nor will I ever forget what you have done for me.” I well remember her illness, and know I did research but much beyond that is lost to me. This was soon after my abuse was uncovered and the rug was pulled out from under me. I was all over the place but I’m so glad I seemed to have pulled it out of the bag then. Her words mean the world to me.
  • I asked a Twitter pal if she’d like to meet up next year – there’s reason for it being next year – and she said yes, which is lovely, and I look forward to our ‘day out’ .
  • I received a ‘care package’ in the post from another online friend, full of thoughtful items – either useful, fun or edible! From comedy dvds to batteries, a massage ball to peppermints.
  • On all the occasions that I left my flat I wasn’t wearing any make up (OK, except lipstick) this is also progress – and yes, more on that in a separate post!

I hyper-focus on ‘the bright side’ – that song could be my anthem, and I’ve recognised that in the last few days I’ve been having thoughts along the lines of …¬†Look at you, you’re doing OK. You’re fine really. You don’t need support. It’s a familiar refrain.

I know a lot about ‘getting on with it’. I know a lot less about thriving within a supportive network. Growing up, trauma was played down and I was schooled to ‘get on with it’, to such an extent that it’s one of the main reasons that I didn’t recognise that I was being deliberately harmed.

Aside from that, having spent four months housebound, showering a couple of times a month, bingeing, starving and stinking, alone, dealing with flashbacks, grief and increasing despair, the last two weeks do look like nirvana in comparison!

I have to remind myself that while it’s great to applaud each step of progress and C-E-L-E-B-R-A-T-E the small things … it feels odd to call them ‘small’ because they are huge achievements when you’ve been struggling so much, but to most people showering, going outside, doing a little shopping, taking care of the basics, are small things … I have to have an eye on the bigger picture. That’s to say that I need to recognise the difficulties I still face, the burdens I carry and the mountains I have to climb, and allow myself to get help where I can AND feel worthy of it.

There’s more on the progress front but I think I’ve given you the highlights! I’m flagging, I’m low on spoons today. I plan to do my treadmill ‘5’ then allow myself to ‘flop’ and indulge in a telly fest of Doctor Who and Pitch Battle!

I don’t know where I would be now if my friend hadn’t made that mercy dash two weeks ago. I am glad that I don’t have to think about that.

Thank you for reading. As ever, I welcome comments, conversation and tweets.

Heart x

Once upon a time … a tale of doctors, dastardly doings and mountains scaled.

This story begins at a little after 3am this morning.¬†I’m going to use my tweets to tell the first part of it, covering the period up until around 7:50am.

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It took a few minutes and several callbacks to get through and then I spent a little more time in a queue, with nervousness building. The surgery receptionists are generally fierce on the phone, less so in person, but I was delighted to be answered by one who is pleasant on the phone. I’d been advised to call today at 8 to try to obtain an ‘on the day appointment’ with my GP.

This GP is new to me, I have seen him just twice to date – in December ’16 and January this year. My previous GP, also male, replaced my great GP of a couple of years in April 2016 when she moved to another city. He is, as she was, the only one of this large practice’s many GPs to work full time, readily accessible pretty much at the drop of a hat. Appointments with the rest are like gold dust, as I’m sure is the case elsewhere.

I was really keen to remain with my great GP’s replacement primarily because of the accessibility issue but it wasn’t to be. Great GP was renown for her lovely manner, efficiency and proactive approach, which very much suited me, myself Mrs Proactive. Her replacement is probably in his early thirties. He’s mild mannered and has a lovely soothing voice with an Irish lilt and was always willing to make himself available to me – with the exception of a home visit in an emergency last year. However, he is far from proactive, is reactive only after a fashion, and is prone to moaning about the hardships of his lot as a GP. Don’t get me wrong, I utterly sympathise.¬†I know that the NHS is terribly s-t-r-e-t-c-h-e-d and I’m certain that the majority of GPs are greatly stressed and more than earn their salaries. I hope that many are wholly patient-centred. With appointments scarce and often limited to eight or 10 minutes, I think that time is for the patient not the doctor’s own grumbles.

A good relationship with a GP is vital if you’re ill, of course. This goes double when you’re chronically ill – when your illness is enduring and you often have complex needs. Health impacts beyond the mind and body, lives can be disrupted even devastated by health problems. In the UK, GPs are the gateway to all other services within the NHS and are also generally necessary to the process of obtaining things such as welfare payments and social care – both of which have also been subject to budget cuts and as a result are increasingly difficult to obtain. There are no guarantees of need being met. A good GP in your corner is a wondrous thing.

I’ll write in another post about how I’ve been unable in the last year or so, to obtain NHS support and treatment in the form of physiotherapy, trauma therapy, treatment for an eating disorder and support to deal with the onset and acute impact of Post Traumatic Stress Disorder (PTSD). I’ll keep this post to the difficulties I’ve experienced in accessing a GP.

In September 2016, I was referred, for the first time in my life, to what is known as an Intensive Home Treatment Team (IHTT), they used to be known as ‘crisis teams’. Essentially, it’s the community version of in patient psychiatric care, designed to keep you out of hospital. ¬†The reasons for that referral, the process leading up to it and my general experience of the IHTT warrants a separate post. I’ll confine myself here to detailing my final experience of the team because of the profound impact it had on me, my health and my ability to access my GP and other services.

I was due to be discharged in early November. The service is a short term one, designed to deal with the most severe crises, those which put someone at risk. However, discharge is known to sometimes be unduly hastened due to the paucity of available resources as a result of under-funding. This particular team came in for criticism recently when a young patient died by suicide immediately after being discharged without further support in place. I already struggle with concerns about being a burden but further felt pressured to be OK when I really was not. The day before my planned discharge I considered. I knew that I was still at risk because further appropriate support had not been put in place. I was fighting to keep myself safe. I felt that it would better to speak up ahead of discharge, rather than afterwards when I would then likely have to go through the whole referral and assessment process again Рno doubt generating bundles of paperwork Рif I were to access the team again.

A Community Psychiatric Nurse (CPN) visited me on the day of discharge. She had visited once before and unlike with the rest of the team I’d found myself feeling wary of her. I pushed myself to plough on. I calmly explained, although not without cost, how I was feeling and the difficulties I was experiencing then. I revealed great detail about the horrible depths of my eating disorder, she is still the only person to whom I’ve revealed those details. She seemed quite nice about it, promised much action to get further support in place and said that my discharge was now on hold. She told me she’d call me the following morning with updates. It was early evening the next day before I heard anything when I received a curt call from the team secretary telling me that two team members were on their way to see me. They arrived moments later. I knew as soon as I opened the door to them that something was very wrong. There were no pleasantries and the pair, the same CPN together with a male support worker I’d seen a few times, were openly hostile. The support worker was openly aggressive. I was utterly bewildered. It transpired that they didn’t believe what I had told the CPN the previous day. They called me a fraud and implied that I was a liar and the support worker told lies about previous statements that he had made to me, about something the team psychiatrist had said to me about a referral to the eating disorders service, and about further support. I was appalled and visibly very distressed, almost unheard of for a woman with a compulsive ‘brave front’ who finds crying difficult, something that they knew.

I need to see my GP as soon as possible for a number of reasons, not least because my physical health has very much deteriorated because of the other issues I’ve been facing. The experience with the crisis team left me terrified that GPs, none of which now really know me, would also disbelieve and dismiss me. I became terrified at the thought of further mistreatment when I was already on my knees and fighting for my life. I know that those of my ‘mental health friends’ who’ve had similar experiences will relate to that last sentence. I’m never entirely comfortable saying that I’m ‘fighting for my life’. That’s not because I don’t believe the statement to be true but I know that while society accepts cancer, as an example, as a life threatening illness, very many are unwilling to accept that mental illness is often life threatening. Many still see suicide as a choice. I am pretty ‘gung-ho’ but no matter what I could not push through this fear. I didn’t give up and it’s taken a lot of work, various actions, to get to this point. Of course, had I not been handed hope this weekend I couldn’t have achieved this today regardless.

That whole experience with the IHTT was somehow surreal, in that I could not believe that health professionals, particularly ones working with people at risk, could behave so unprofessionally and without regard to their duty of care. This is the first time I’ve written about this experience, it was six weeks after it happened before I could speak about it. It’s only now that I am beginning to be able to discuss what happened in any detail. I won’t discuss here how I felt in reaction to it, except to say that I felt dirty among other things and I hadn’t felt that way since being abused as a young person. I told only my ex-husband who I rang after asking the IHTT workers to leave. I was very polite but firm, they were doing a lot of damage and were clearly unable to either recognise that or care about it. I was distraught and I knew I needed to do that to protect myself.

I rang my ex in utter despair, not knowing where else to turn, speaking to him helped a little, and at least I began to manage to step back from immediate thoughts of suicide and start to continue on.

When my call to the GP surgery was answered this morning all appointments with my GP today had been booked. The next bookable appointment was on Monday 26th. I also had the option to phone again tomorrow at 8am and try for an on the day appointment. Until two days ago, I hadn’t been able to leave my flat for four months due to a combination of PTSD and Complex Trauma symptoms and issues including pain and fatigue affecting my mobility. Ideally, at this time, I need someone to accompany me to the surgery and back home again to ensure I’m safe from falls and such. This is not impossible to arrange but is proving very difficult. A friend has generously agreed to help but, through no fault on her part, has limited availability.

With notes to read otherwise my nerves would have made me incoherent, I rang the surgery again in ‘speaking time’ later this morning – a daily slot when patients can call in and speak to their own GP, if available, or to the duty doctor of the day. Mercifully, I was able to be put straight through to my GP. He received a letter in early May expressing acute concern about my mental health from my newly allocated social worker. He wrote me a letter a week later telling me to make an appointment with him if I needed one. I started by saying that the social worker had been right to be concerned and that my health has been generally poor since February.¬†I explained that I’ve had difficulty in getting to see him for a number of reasons, most recently because of the scarcity of appointments (I did say I wasn’t complaining about that) and because of the issue of needing to be accompanied. I asked politely, clearly and directly if it would be possible to make time for a 10 minute catch up over the phone. He didn’t answer, or offer a home visit as I know Great GP would have done, but said that he’d book me an appointment on Thursday at 10, that I could tell my friend and that he’d hope to see me then, that was it.

My friend is not able to accompany me on Thursday as she will be at a conference out of the area. I’ve decided that it would be a good idea to ask my advocacy worker to sit in on the appointment with me. She is not able to do the escorting to and from bit, but I’m wondering if I can get myself to the surgery in a taxi, which I was planning to do anyway as a one off, whether if I was to become too unwell afterwards she’d be allowed to make an exception and see me home. If not, my friend has offered to ask a friend of hers to accompany me if possible. So, a couple of options there, we’ll see what transpires.

With regards to the rest of the day, I need to do a laundry load – I ¬†have an underwear crisis, I need to run the dishwasher, place an online grocery order and compose a couple of vital emails including a reply to my social worker’s message of Friday. I would like to take some time to reacquaint myself with my art journal. ‘Spoons’, as ever, will dictate for the most part. I know, especially given my disrupted night, that I’ve already scaled mountains today and I’m very pleased about that.

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Thanks for reading. See you anon.

Heart x

N.B. I have taken steps to begin the process of making a complaint about the actions of the IHTT. That’s what lead me to an advocacy worker.

Heart set on dying?

I want to die. I really want to die. I just want this to end.

Those thoughts have been uppermost after months of waxing and waning. I’ve continued to fight but my ongoing deterioration is undeniable.

I long for someone to tell me to sit down, to say ‘let me do it’, to take the strain if only for a few moments, and for them to bring me a cup of tea and a sandwich. I long for someone to let me curl up under some ‘comforter’ and pour it all out. I LONG to feel connection to someone. I long to be heard. I long for kindness and support. I long not to have to do everything by myself, to be able to stop having to continually fight horrors alone. I long not to feel that on occasion I have to inappropriately ask support of people who should not be giving it, because I am desperate. Like the person you know only to nod hello to at work only to then find yourself suddenly having to ask them to wash your smalls or some other indignity – and no, I haven’t actually done that¬†one. I long to be asked: What do you need? What would help right now? and to feel that the person asking was willing to try, amid their own limitations be they geographical, health or time or otherwise related, to try to work with me to make some progress.

At some point during the night, a friend on hearing of my suicidal despair told me to ‘stay with him’ and that we’d ‘try to find a way through’. Such powerful words when you’ve lost hope and need something to which to CLING.¬†Those are just the words you need from friends at the worst of times. Certainly I was glad to hear them, only I couldn’t take comfort in them.

We have never met. We live many miles apart. We are online friends, although we have come to chat on the phone in recent months. I haven’t had the gut feeling that there is something to fear from the friendship and that it would be dangerous for me to proceed, as I’ve had many times in the last 15 years. I trust my ‘gut’ but have forced myself to ignore it since loss and illness narrowed my world to such an extent that I came to feel that this ‘beggar’ couldn’t afford to be choosy. Every time my gut instinct proved right but not before I’d paid the price for ignoring it. This friend, of last night’s words, and I have some shared experience and this friend undeniably has empathy. Although it’s a relatively new friendship, this person appears to have a good grasp of what I’m about and a reasonable grasp of my complex circumstances. Finally, after the last year, too many damaging encounters and friends who have betrayed my trust have left me unable to trust and connect. I can now only see that this friend, and any others, will come to stop caring.

One thing I know about you is that this isn’t your fault, more that it’s an unholy concoction of circumstances … You’re my friend and I’m very proud to know you.¬†How can this friend – an ordinary bloke, said with no disrespect but a worry that perhaps I am under-estimating – say that where other friends can not? If older friends* – those in whom I can still feel something, could say words like this, the power would be extraordinary and could catapult me into new connections with some confidence. Does anyone understand what I mean? If people who have known me for years, who were once very close to me can’t say/act like that I matter, on top of the betrayals of family, can I ever really matter to anyone else? *They are now so very few, admittedly this is a very small sample.

It seems ‘crazy’ to think that when my abuse was first revealed more than 15 years ago and I became so very ill, I consoled myself with the thought that friends would rally …
I didn’t expect that I would lose so many of them because they couldn’t or wouldn’t understand and so rejected me, or found my situation too uncomfortable and so distanced themselves. I pushed away the stragglers who remained on the periphery, too terrified to confide for fear of more of the same. A few years ago I reconnected with one such friend lost in that way, someone I valued very much and trusted, but ultimately there is now only more distance. This is alienation in the truest sense, my situation and suffering (I hate to apply that word to me; it feels to reek of self pity) too alien to comprehend, and waaaaay too alien to ever want to embrace. I long for that ’embrace’, some connection. I belong nowhere …
It seems crazy because in spite of all that, deep down inside somewhere the desire for friends to rally still lives on.

Picture me, if you will, clinging to a perilously lofty cliff face with no safety lines and ever-crumbling hand and footholds, frequently flailing, slipping and falling, before grasping and clinging on again by the merest margin.

I want to let go. I want nothingness to engulf me.

Count your ‘pegs’, or whatever climbers call those things that they tap into rock, your ‘ harness’ and other ‘safety lines’, for me now, will you, please? Perhaps there’s a spouse or partner, a pet, a home of your own, children, a job, sufficient income, food in your fridge, connections and pleasures, colleagues, friends, wider family, history and memories, a safe place, a trusted professional. Things that amid stress, and even at the worst of times, to which you can cling and feel grounded, tethered, held in place – pinned to that cliff face even though you are terrified, even though your predicament is hellish, you are held in place. I ask this because in all these years I have never yet encountered any other ‘struggler’ without tethers. Plenty who can feel that they are without them, who can struggle to see them, yes, but no one without any in actuality. A GP once told me that those people never make it. I like to defy odds but in the last year I have feared I’ve been stupid in my dogged belief that I could.

Fantasies and fear are my only ‘tethers’. I want to write more on this but I’m flagging. I’ll try to do it in another post, except to say that in the absence of psychosis and with depression only rarely removing my rationale, I fear a suicide attempt failing and landing me in a worse situation. I’m not living, I’m existing, but I’m failing to die.

I live with the knowledge that if I were to go missing there is no one to notice or to raise an alarm, and that if I were to die it could be weeks before I would be found. I don’t dream up these thoughts to dwell or wallow or feel sorry for myself. They are facts I’ve been forced to face in the last couple of years. Realisation slow in the making but helped along by having to beg a near stranger to help me to get to A&E in December and the days that I’ve gone without food since 2015, either through lack of funds or lack of capacity due to illness to prepare something, because there was no one willing to help – for eight days at worst. It’s immensely difficult to lay bare these examples as the circumstances surrounding them are complex and there is much left unsaid. I fear misunderstanding and negative judgement.

I’d never heard those words before last night, not in all those years or the preceding years of abuse and trauma. Not one of the people I loved and cared about ever said those words or any remotely like them. I’ve said those words VERY many times. I’ve actually lost count of the number of times I dealt with someone else’s suicidal crisis between 2011 and 2016 alone. I have quite a record and, given that I’m not a Samaritans volunteer or mental health professional, it’s probably a fairly unusual one. I jump in, a LOT, always hoping to make a positive difference but sometimes for misguided, even unhealthy, reasons, mostly a desperate need to try to prevent others feeling what I feel.

I have had not a single regret that I cut myself off from what remained of my family as it was only, and could only ever be, abusive. Likewise I have never regretted leaving my marriage a little over three years ago. It was dysfunctional, deeply unhealthy for the most part and has been described by others as sometimes being abusive; I find it difficult to claim that. The hugs were wonderful, as sometimes was the kindness and the connection, but the damage it was doing, ultimately to both of us, was too great. I am sad that illness and my circumstances have isolated me. I am angry that chronic under-funding of health and social care has killed many and severely worsened my own health and circumstances leaving me to suffer acutely, unnecessarily, and unable to ‘grab life by the horns’ and thrive. Again, that’s so difficult to say. Ultimately, I’ve been rendered housebound for the past four months – no longer able to leave my flat either psychologically or physically due to Post Traumatic Stress Disorder and issues of pain, fatigue and mobility.

Inside my mind I am as proactive as ever, as hard working, as determined, as enthusiastic, as ‘can do’, as ‘grab life by the horns’ but now mostly only when I unconsciously dissociate from reality. Reality that includes a sick body; a mind tormented by loss, grief , loneliness and desperate desire to thrive; hunger; and isolation so complete that I don’t know when I’ll next see or speak to another human, and I’m struggling to remember when I last saw someone. I am permanently online, often now too lost to connect to anyone but still ‘seeing’ the world, if only virtually, remains a sort of tether but one without comfort. Without it these past few months, I think I would already be dead. It’s kept me from completely losing my mind.

I hoped that writing this would provide some sort of catharsis. I have written it to try to let it out of my head. I have written it while trying not to try to hard, trying not to think of the audience or worry who might judge, feel offended or otherwise react negatively. Part of me doesn’t want to receive comments on this post but another part cannot allow me to enter my WordPress ‘dashboard’ and turn off that function on this post. I fear judgement and disdain. I fear troubling anyone. Another part wants people who know me to read this post, and wants to find ways to encourage that. I know I welcome questions and would welcome the attempts of others, especially my friends, to learn and understand. I am thoughtful and reflective and my depth of insight is frequently noted but I think I may currently lack the wherewithal to isolate my motivations, comprehend and marshal them in my best interests. Perhaps I am setting myself up for more hurt? Part of me feels that I should let people grow ever distant, set them free.

I have continued to engage with my online friend since we connected late last night. I am in the sitting room at my desk writing this post. I emailed my recently allocated social worker, ostensibly my key worker, around 8 this morning to let her know that I am in dire straits. I have been told there is nothing that can be offered right now, but I forced myself to ask her directly if there is anything¬†at all ¬†that she could do to help me at this time. Occasionally, pushing hard reveals that actually something is possible, but my experience is that pushing alone, however skillfully, is rarely enough. You’re easily dismissed when alone and without others to back you. I had to do something having failed to find the courage to attempt to kill myself. I’ve not yet received a reply but continue to compulsively check my email. She might even be on leave. The working day is all but over as I write this sentence, at any rate.

I could say more; I still feel compulsive urges to do so, particularly around the suicidal ideation, and also expanding on reasons for the dearth of support, in a desperate attempt to make readers understand. I shall refrain from doing so, and deploy my inner ‘Tigger‘ to publish and be damned.

Final note: I have just received a reply from the social worker. It is kind enough but offers no support, just tells me to keep keeping on by myself and reminds me of the usual crisis lines. I will try to write specifically about the health and social care support situation soon.

Thank you for reading.

EULOGY: A POEM

TW: This post features themes of abuse, trauma and suicide. It may make difficult reading, however it is, ultimately, hopeful. 

Support is vital in all our lives. Appropriate support is paramount to survivors of abuse and trauma, and people living with mental illness.

I’m both, and know many others in the same boat. It is¬†notoriously difficult to obtain – for reasons including, but not limited to, funding cuts; policy; limited awareness; and the constraints of symptoms and circumstances.

Last year I gained appropriate professional support for the first time, the resulting impact was life-changing.

Finally, I could do more than survive, more than fight, more than exist, more than toil, more than tolerate, more even than live. I could begin to thrive. I could, for the very first time be entirely myself … more than four decades into my life. I am rarely lost for words but¬†there are none to describe how that felt. There was intense, profound, unadulterated¬†JOY, but so much more.

In early April my trusted GP, the first to have seen and heard ME, relocated to a new city. A week later my housing support officer was withdrawn overnight, with only 24 hours notice.

At the beginning of that month I’d come to understand that now that I finally knew a sense of safety and some peace of mind, my mind was beginning to unlock trauma, pain, grief, anger, all yet to be processed. Also, thriving at last, I came to realise the extent of what had been stolen from and kept from me, for so very many years, and the impact of opportunities, such as motherhood, forever lost.

I must grieve. These¬†are necessary steps on the road to healing. It was a process I welcomed and was at ease with, as far as one can be with these things. It began happening at a gentle pace, but a deluge was be triggered.¬†On top of the loss of ¬†support and the ‘unlocking process’, unexpected and significant¬†stressful incidences occurred – not least the sudden re-emergence of a figure from my childhood, who then turned out to be a wolf in sheep’s clothing. The combined impact was devastating.

My housing support had been approaching its natural end, with my housing crisis over, and related financial issues close to resolution. However, I was not in a position where it was safe for me to be left without any support. A phased ending to housing support and a supported transition to new support were required, to safeguard my well being and my safety. Instead, the ending of my housing support was extremely poorly handled and these measures, although agreed, were not implemented. A number of other vital assurances were broken and my trust betrayed.

Betrayal sounds dramatic. To have the trust of a survivor of abuse is a privilege, to willingly compromise it is to betray it and the person who gave it. For me, it triggered latent symptoms of Post Traumatic Stress Disorder (PTSD) and resulted in an incidence of self harm. Such harm was never common for me, and had not occurred in many years. The betrayal of trust has also had a negative impact on my friendships.

I have now been without any professional support for more than nine weeks. I am presently unable to access any¬†because I am terrified to trust again. I know I must, somehow. I’m working on it. I’m working very hard.

A survivor of abuse is vulnerable in the extreme. Like abusers, there are many who will exploit that vulnerability to some extent, sometimes maliciously, often not, but instead as a result of carelessness. It’s likely, as in my case, that an abuser(s) will not be the last to betray a survivor’s trust. After damaging experiences of professional ‘support’, it took huge¬†nerve and a gargantuan leap of faith to try again last year, ten years on from my last encounters with support professionals.

I was experiencing my worst depressive episode for a decade and increasingly suicidal. I don’t lack courage and I’m commonly quite gung ho. Regardless,¬†I had to reach rock bottom before I dared allow a support worker into my life. I was blown away by the quality of the service, and it was good. It’s perhaps worth noting that I have a tendency to focus too much on the positive and be too grateful, so may not fully appreciate negatives.

As the impact of appropriate support was profound, so was that of the betrayal.

Eulogy is inspired by these recent events and my experience of them. It’s told from the perspective of a support professional. It describes how it was for me – only the death (by suicide) and the worker’s thoughts are imagined. It could have been my reality in its entirety.

I live to fight on …

I welcome comments and discussion. I’d¬†love¬†to hear from health professionals and professionals working in the field of support and encountering clients who are survivors of abuse and/or experiencing mental illness. This post is NOT intended to berate or malign those professionals in any way. I write it seeking only to be seen and heard.

EULOGY

To the funeral he came
Head bowed
Inside it a bell tolled

He felt guilt, yet he bore none
He cared
She knew and was grateful

Her suffering appalled him
He ached
Now she was at peace they said

She found peace with me, he thought
She thrived
She was happy then and safe …

Long buried pains sought freedom
Safe now
Let them come and be processed

And so the key was turned
Box unlocked
Fear not, now the time is right

She could not cry, could not feel
Pain unleashed
She longed to move through it

Freedom she knew lay that way
True healing
The hose not blocked, free-flowing

It came, drip by drip at first
She welcomed
Meaning was not always clear

Not all dots could be joined
Confusion hampered
Slowly her vision cleared

Sudden withdrawal, word broken
Triggers impacted
She braced and held tight

She alone would be enough
She doubted
Her tenuous grip weakened

Without safety net, she hung
Dam breached
Tears flowed, fears grew, hope died

Reinstate support, she said
He ignored
Amid increasing swell she clung on

Trusted support is vital
She pleaded
I’m at risk, no longer safe

You must understand they said
Protocol matters
We can no longer support you

He didn’t reassure her
Stayed silent
Had he cared? Did he still?

She longed to know safety
She tried
They misunderstood her now

They judged, her trust collapsed
Not seen
She couldn’t make herself heard

When it came she was ready
She accepted
The torrent swept her away

No lifeboat or rescue came
She drowned
Few knew it to be a loss

He came to show respect once more
She mattered
He remembered her light

For once he couldn’t cry
He swallowed
He endured, just as she had

He hoped she had known he
Liked her
Might even have been her friend

He wished she could have lived
Known it
Believed, enjoyed and thrived

She knew that, he told himself
Had to
Could not dwell, he must go on

He left, head bowed once more
Something stirred
Inside she smiled, he cried

Copyright ‘heartsetonliving’ May 2016

 

 

 

 

 

 

 

 

Asking for help in a crisis … or not!

I spent the majority of 2015 ‘in crisis’. Between¬†May and December I experienced my most severe depressive episode in a decade. It took me right off my feet, for the most part left me entirely incapacitated, and ultimately at risk of dying.¬†CRISISI only began to recover in the days leading up to Christmas. January saw steady improvement in my mood. I was thrilled to find myself alive,¬†having been convinced that I wouldn’t see Christmas because I had to die. I had hope again and, for the first time in my life, reliable, consistent support – which was to prove life-changing and to allow the final pieces of my life and self recovery puzzle to begin to fall into place.

February was rather more of a roller coaster of mood. I panicked as I first felt my mood decline, terrified of the depression taking hold and fearing I would be trapped in it again for months, or even years as I once had been. Depression can be paralysing.

Late last year, on a day when I was able to harness some capacity, I arranged to visit the local crisis centre – a voluntary sector project – to obtain support to build a crisis plan. It was a helpful appointment – my plan involved strengthening my fledgling support network and reaching out to speak to a worker at the crisis centre. The latter can be contacted by text, email or call … 24/7. A follow up appointment may then also be made for the client to visit the centre over the course of the next two days or a follow up call may be made to the client the next¬†day, if more support is needed. It’s a good service. There is only limited provision of a similar type throughout the UK, certainly nowhere near enough to meet demand. Commonly, someone experiencing a mental health crisis, certainly outside of ‘office hours’, is likely to find attending A&E, where resources are stretched and often not geared to mental health, is their only option.

I feel enormously grateful that I¬†now have¬†access to appropriate crisis support. I experienced a four year period of serious mental illness some years ago. There was no specialist crisis support where I lived at that time, only an out of hours GP service that was stretched and, I’m afraid, in no way sympathetic to mental health difficulties. Telephone helplines, such as those offered by the Samaritans, SANE, Breathing Space¬†(Scotland)¬†and Supportline,¬†although helpful, were no substitute for the services¬†that are now available to me in a new area. I believe everyone experiencing mental health crisis has a right to the best, free care – 24/7. We are some way from making that a reality.

So, what is a mental health crisis? If you’ve had one you’ll certainly know about it; they are far from¬†fun. Like those who experience them, they are varied and individual. A crisis might involve psychosis. For the uninitiated, that’s not where one wields an axe and becomes a killer as media depictions¬†might suggest, but rather where a person’s perception of reality becomes mildly, moderately or severely distorted. Read more here.¬†I thank my lucky stars that I haven’t had to experience it and have much respect for those who do. They’re not ‘loony’, ‘psycho’ or ‘sick’, but experiencing the symptoms of illness. They are as¬†deserving of respect and care as anyone experiencing serious illness. A crisis might involve suicidal feelings,¬†ideation and plans. Equally a crisis might involve loneliness, despair, fear or anxiety, impeding a person’s ability to cope or function.

For me, crisis is feeling suicidal,¬†whether those feelings progress to planning¬†to end my life or not, I don’t want to feel suicidal. As far as humanly possible, I want to avoid slipping that far.

Crisis prevention care is as vital as in-crisis care.

The increasingly stretched NHS is, in mental health terms, generally reactive rather than preventative, as limited funds mean limited resources and so limited capacity. In-crisis care is often woefully inadequate, crisis prevention nigh on non-existent. I was only able to access the support I needed when I was deeply in crisis, even after months of crying out to my GP for help with my rapidly worsening depression and suicidal ideation. The attitude was very much one of not to worry, you’ll be fine. When I described¬†finding myself assessing¬†elements of my home as means to end my life, my GP said that was OK, so long as I didn’t act on those thoughts.

No support was put in place to ensure that I didn’t act on them or to help manage and indeed, reduce¬†those thoughts. Only when a friend, sensing that a suicide attempt may well be imminent, telephoned my GP surgery insisting they take action, did appropriate mental health support¬†begin to materialise. My friend (at the time working away from home and 500 miles from the city where we both live) was correct in her assumption and may well have saved my life by at first listening, by continuing to listen until she was able to understand, and, once she did, by taking prompt and appropriate action.

Aside from a lack of appropriate sources of support, the symptoms of mental illness may themselves impede access to support. In recent months, despite¬†having confidence in my local crisis centre (at least my ‘logical brain’ does) and having received much encouragement to seek support from it and other sources, such as my GP and my housing support officer, I have been unable to do so while in crisis or once I begin the slide towards crisis. This is because my depression rather has its own mind and it’s not supportive of my well-being, darn thing that it is! Depression makes me believe that I’m a burden and that no one can or will help me. That’s not what you need to be thinking when you need to reach out for support to manage your illness. You see my dilemma.¬†I don’t feel that way unless I’m in the grip of depressive illness. That at least allows me to continue to devise and revise techniques to circumvent the obstacles to support.

I have made progress.

In February, with encouragement from my housing support officer, I was able to contact the crisis centre as my mood began to rise after a frightening few days of persistent low mood – although not so low as to ignite suicidal ideation. The contact helped strengthen my capacity to recover and continue to move forward. I was able to arrange to visit the centre two days later, in order to discuss my difficulty in reaching out as a mood slide or other crisis trigger occurs. This proved to be enormously helpful. I found my own answers, but having the time and space to discuss my feelings and thoughts around the problem with a crisis worker, is what enabled me to do so.

I realised that I had not been able to engage with either my crisis plan or my crisis/comfort box, despite working so hard to establish them to support me. In conversation with the crisis centre worker, I realised that I had been treating both plan and box as pariahs.

They reminded me of being in severe crisis – a terrible place to which I never again wanted to return – and so I shunned them.

I resolved to rename my crisis plan a rather more cosy support plan and to drop the word crisis from the comfort box. I also made a new, larger box and reworked the contents – a few of which are shown below. It includes, but is not limited to, the following.

  • Items for relaxation – such as a stress toy, herbal tea bags, a relaxation audio, a book and postcards to colour.
  • Photo frames to fill with images of the few who stood by me last year and remind me of the hope and support they offer me.
  • A soapstone heart and fluffy bunny – both tactile –¬†to aid ¬†grounding techniques.
  • Assorted toys and other items from my free and¬†brilliant ¬†Little Box of Distractions¬†to occupy and distract a stressed mind are also in there.

Someofthecontentsofmycomfort box

For the first time I feel confident about accessing appropriate support when I need it – in the form of contacting a supportive friend, the crisis centre or a specialist helpline, whichever is¬†most appropriate in the circumstances. I am somewhat less confident about accessing crisis prevention or in-crisis support from the NHS because of it’s failure to support me in the past and because of the limitations I know have been forced upon it.

Last week a mood slide was triggered by the unexpected discovery of a psychiatrist’s report from more than a decade ago. It details my poor mental state in the immediate aftermath of my disclosure of the physical and psychological¬†abuse I’d experienced in childhood and beyond. I had some horrendous experiences within the NHS in those days, the worst when I was verbally abused by a GP, who went on to admit his wrongdoing but which was subsequently covered up and I was hounded from the practice. A mental health charity backed me but said that without family, a supportive partner or friends to stand and fight with me, I had zero chance of redress.

I still fear being that vulnerable again and know I have still work to do to recover from it. My current GP who, since my friend acted, has improved her support and so has been slowly gaining my trust – the first to do so since that event 11 years ago – is leaving the practice next month. Starting anew with another GP will challenge me, but must be done.

Faced with this triggered mood slide and associated flashbacks and anxieties, I did not panic and so trigger a further slide (well, OK, I did a teensy bit). I calmly and mindfully worked to ground myself, helping to stabilise me, and reached out to friends, Twitter friends and the crisis centre to obtain the support I needed to begin to recover my mood and confidence.

HappyThoughtsJar

How I felt when I achieved this (delighted) is described on a sticky note held within the jar pictured above. It was made for me last month by that super friend. Her intention is that the happy thoughts collected within it can also help to comfort me at more difficult times.

Medication … miracle?!

TW: This post contains discussion of suicidal intent and a suicide attempt.

So, after stepping back from the brink, how are things now?

Well, by goodness, there is a LOT going on in my life, a great deal to manage and to process but I have some support and may yet have more to come. For the first time in my life that support is¬†appropriate and reliable and it’s paying dividends. There remains a long and challenging road ahead, more of that in later posts, but the outlook is positive.

I have a long history of depression, I’ve lived with episodes of it for more than 25 years, since I was around 18¬†years old.¬†Mine is always reactive and triggered by major stress. Alas, when you are survivor of abuse and trauma, life does rather tend to have¬†more than its fair share of¬†that!

I wrote about the attempt I made many years ago to end my life by suicide, here. It happened in the years immediately following my disclosure, to a GP and subsequently a counsellor, of my experiences of trauma, physical and psychological abuse within my family over many years. I was not well supported then and was lucky to survive the attempt. I was discharged from hospital with no follow up support. I tried to be proactive and so sought it out but soon realised there was nothing doing. I feel great dismay when I read accounts by others who are still having this experience in the 2010s.

Finding myself at risk of homelessness was at the root of the prolonged episode of depression in the year from December 2014, but there were other contributing factors. I had been pushing myself much too hard, for one. The prospect of losing the roof over one’s head would be stressful for anyone. As a result of my experiences of abuse, loss has loomed large in my life. I lost all my family, many friends and with those losses connections to my history. I’ve lost some memory. I’ve lost some hair (!) as a result of alopecia. I’ve lost my beloved career. I’ve lost my marriage and I’ve lost the chance to have a family of my own. I’ve lost health and fitness and I’ve lost a great amount of time to illness and recovery. A few things can be recovered, others are gone for ever, others can be replaced with a great deal of flexibility and endeavour. Throughout it all I have hung on to a home – there have been many of varying types scattered around the UK – this one is mine and mine alone and with that has come a fledging sense of safety. The threat of its loss became unbearable.

Depression threatened me again and as its impact intensified, I was disturbed to find¬†that it was once again very difficult to access support, despite effort and honesty on my part. [I’d like to discuss this issue in more detail but will do so in a later post focusing on¬†issues around suicide prevention.]

Medication was mentioned but I was very reluctant to go down that road. Having previously been prescribed various anti-depressant and anti-anxiety medications over a period of four years. I never felt they had any benefit or served to ease my psychiatric symptoms in any way. The doses were regularly increased to no effect, in my view, except to ensure that I had a veritable pharmacy on hand at home. It was while on the highest doses that I made the attempt on my life all those years ago, by swallowing a massive overdose of more than 100 tablets.

I came off all medication in the year following my suicide attempt but continued to pursue counselling and other forms of psychological support that I found in the voluntary sector  and which were hugely beneficial to me.

When my friend made the call to my GP that brought me back from the brink, a few short weeks ago. medication remained the only treatment option on the table. I was told I would not be allowed to access further psychological support Рsuch as specialised trauma therapy Рon the NHS, without having first tried medication. My GP, whom I have known for 18 months, remained convinced that it could help me. Knowing that something had to change if I was to continue to stay alive and after lengthy discussion with my GP during an hour long home visit, I made the decision to try medication again.

I didn’t want to be able to accumulate medication at home, knowing myself to be at risk of suicide, so we agreed that I would receive my medication weekly and that since I am having difficulty getting out and about it would be delivered to my home each week.

After just two weeks on a relatively lose dose of anti-depressant medication, I realised that my mood had been steadily improving during¬†the preceding¬†seven days. Side effects were unpleasant at first but manageable with the help of my GP and they have subsided. We increased the dose after those two weeks and I’m due a final increase next week. My mood has remained stable and this is despite receiving some devastating news four days¬†prior to Christmas and, additionally, having an encounter that forced me to relive episodes of terrifying violence in my childhood.

When considering whether to try medication again it didn’t occur to me¬†that something is different this time around. Although I’ve been experiencing the most severe depression again, I have come a very long way in the intervening years and I’m in a very different ‘place’. It certainly seems as though the medication is doing its job this time – ironically, I am taking Sertraline which is the very first of the medications I was prescribed all those years ago. (That news very nearly had me running for the hills, I can tell you!) Perhaps the fact that I have moved on so very much, has made the difference.

A Twitter pal has been expressly wishing me miracles¬†in recent months and continues to do so. It looks like that wishing worked ūüôā …. I needed a miracle and I think I got one … thanks LongJohn ūüėČ !