An update, possibly rambling!

I’m a woman on a mission on today, to crack several sticky issues, but I wanted to bash out an update here while my cup of tea is brewing ūüôā .

Social care
There’s been no word from social work since the social worker who assessed me for social care in May, left to begin maternity leave at the end of July, despite my being told that I’d be allocated a new social worker. I’ve tried to contact the service manager, my ex-social worker gave me her details as she left, but I can’t get any response for her. A form did arrive in the post two days ago, from a different department, together with a letter asking me to supply the financial details requested in order that they can determine how much to charge me. This without my having been told that I would be charged. My next task today will be to complete the form. For the moment I’m putting the question of what happens if the decided charge is more than ‘buttons’, putting social care out of my reach, because that’s too scary to contemplate right now.

I still haven’t been told who will prove the care I’ve apparently been assessed as being eligible to receive (according to ex social worker), the terms of it or when I can expect it to start. Six weeks ago, my second choice of provider had apparently said that they thought they could support me but couldn’t confirm just at that moment. It’s proved impossible to find out anything more since. Sheesh, just writing about this is making me feel weary, so it must be a bagful of fun to read too. Apologies folks ūüôā .

Advocacy
I’ve emailed the local advocacy service this morning. My advocacy worker is now only available on Thursday and Fridays and so have asked for a meeting on either day this week, in order that we can discuss the following:
– Social work/care – I’ll ask if she will phone the manager when we meet – when she phoned earlier in the year there was immediate action. I could phone but I think the added clout of someone other than me phoning could make a difference. Also, I’m already under too much stress and both my interim therapist and my inner self care monitor (!) are urging that I lighten my load if at all possible.
– Complaint re crisis team – This is covered in this post, skip to the paragraph beginning ‘In September 2016’, to read the most pertinent bit. I have just two months left to get the complaint in. I’ve had to put it on hold with so much else going on.
– GP – I’ve lost such confidence since the crisis team debacle – not helped by my struggling to click with a new GP since my one left the practice last year. Her replacement is largely ineffective and the senior partner I chose to see instead, generally patronising but also, worryingly, dismissive of my mental health and won’t discuss it. I don’t know whether that’s due to his own ‘issues’ or whether he’s been influenced by the crisis team’s inaccurate conclusions.

Health
I’ve just called to make an appointment to see a female GP at my practice, having realised that I’ve consulted three male GPs during my five and a bit years with the practice and never had a good experience with any of them! Conversely, I’ve seen four female GPs there – all but one at least several times and all of those were excellent, only the one was dreadful (older, rude and crabby) and I opted never to see her again ūüėÄ !

My first choice is about to begin a month’s leave. I’m booked in for a double appointment with my second choice (only second because she works fewer hours) on Friday, 8th September, and have already asked if my advocacy worker can accompany me. I’ve been advised it’s worth having that support until I am settled with a new GP and until my complaint about the crisis team has been resolved.

Primarily, I need to speak to her about the new and different depressions that I’ve been experiencing, which I strongly suspect are related to the perimenopause. Despite having experienced episodes of depression for nearly 30 years, these are the worst I’ve experienced, because they are so … complete … that’s the only word I can think of to even begin describe it. It’s just MORE … than previous depressive episodes, possibly because my usual depression is ‘reactive’ – a response to a particular trauma or stressor – this stuff ‘just is’, as clinical depression often is, but with the added ‘quality’ of exacerbating my Complex Trauma symptoms. I lose all capacity for days on end and it’s as though I …¬†Tigger, grab life by the horns, heart set on living – have left¬†the building. I’m left entirely unable to connect to anything or anyone and actively suicidal … like never before (and I’m without support for that). It’s difficult to write about. It’s difficult to appreciate if you haven’t been there. Suffice to say it’s horrendous and I’m generally worried for my safety and very much hoping that the GP will be sympathetic and will work with me to find a way to manage this, and to get to the bottom of the myriad of other new symptoms that I’m experiencing lately, making it impossible to sustain even a semblance of life.

Time is of the essence
I’m trying to be as productive as I possibly can in the next two weeks, squeezing even more than usual out of every ‘spoon’, to get as much sorted as possible, because, if the establishing pattern continues, I’m likely to lose the next two weeks of my ‘cycle’, and spend it clinging onto life by my fingertips. Lordy, I do hope not, but I’m trying to prepare to try to mitigate the impact. The last episode alone cost me ¬£124 in appointment cancellations fees (dentist and physio) eating up the last of my little kitty from the Journalist’s Charity, and I haven’t even got my new specs because I had to cancel that appointment too. Oh my, I HAVE to laugh :-D, while I can, it keeps me going.

TTFN. Thanks for reading.

Heart x

 

 

Monday musings 

Feeling a bit scared tonight because I’m a lot more fatigued and in a lot more pain than I’d expect to be in accordance with my activity. 

I don’t think I’m coming down with anything and I have been pacing myself very carefully for the last couple of months. 

I’ve just got into bed (8:05pm) and I’m tapping this out on my phone. I’ve got a very early start tomorrow because I’m due to attend a free course run by a local organisation for people who have disabilities. Both lunch and transport are provided and I’m due to be collected by taxi at 10am. 

I’m worried that this excessive pain and fatigue is a sign that I’m entering a flare-up – a prolonged period of increased symptoms. A bad flare reduces my capacity to near zero and makes it very difficult to look after myself without support. Such incapacity and not being able to properly look after myself takes a serious toll on my mental health. I have one friend who could drop in with supplies in an emergency but she travels a lot and is often not in town. Otherwise it’s just up to me. 

It may not get so bad again this time. I am well aware of that and I’m certainly not trying to focus on the gloomy side. That is definitely not my way. I guess I’m just aware of how much I’m at risk while I’m still without support. Things are hard as it is day to day but in a flare up they become impossible. I suppose that no matter how positive, how Tigger I am, that reality remains and whether consciously or unconsciously it’s hard not to worry when symptoms worsen. My mood feels wobbly, better than over the weekend, but as though it’s not on solid ground. It feels vulnerable and so do I in turn. 

I knew I faced a huge challenge to carry on without any support at all while waiting for the wheels of the social care system to turn. It’s been almost three months now since I was finally assessed and found to be in urgent need of support at home. I’m hoping so much that support will finally be in place by the end of this month.  I hope that I will be able to take my foot off the pedal just a little and feel like just a little of the burden has been lifted from my shoulders. 

I’ve had a productive day today starting with some physio exercises, then, after showering and something to eat, doing necessary admin, some domestic stuff including two very necessary loads of laundry to provide me with both clean underwear and towels. I posted some cards and letters, picked up a few errands and I met a friend in a nearby cafe for an hour which provided me with some very welcome company and conversation. She has schizo-affective disorder. As I understand it, that means that she sits somewhere on the spectrum between schizophrenia and bipolar disorder. She feels herself to be bipolar with a bit extra thrown in. She has many challenges of her own. We arranged to go to see a local band play late next month. It’s a free gig, just an hour in length, so bite-sized which fits my spoonie requirements, and is during the daytime, which is also a must for me. I’m silently praying (or something, given that I’m an atheist) that I will keep well enough to go. 

It’s high time that I stopped writing and focused instead on trying to relax. I need to be asleep by 10:30pm at the latest. I still need to assess whether I’m going to need painkillers in order to be able to sleep. I will manage without them if at all possible. I also need to clean my teeth and moisturize – the last couple of bits of my before bed routine. 

G’night folks!

Heart x 

Money, Money, Money

I’m not someone who is driven by money, money,¬†money.¬†I’ve no desire to amass great piles of it, and I struggle with the idea of people having vast fortunes way beyond any person’s need.

It is very nice to have enough money, by that I mean enough to live comfortably, to pay one’s way in life and to be able to live a fulfilling life.

I haven’t been able to undertake paid employment for quite some time due to ill health and the process of ‘trauma recovery’. The latter can in itself be a full time occupation. I was in paid employment as a broadcast journalist when I met the man who became my husband and I was able to contribute to our union, but he went on to support me financially for some years due to my ill health.

I’ve been in receipt of welfare support or benefits for a little over a year and a half now. Obtaining them is a stressful, arduous and sometimes dehumanising experience. Some months after my marriage broke down, I found myself unable to afford to heat my home or buy food. A couple of friends helped out but I had to rely on food parcels for three months, from one of the UK’s growing number of food banks.

I receive Employment and Support Allowance (¬£250 per fortnight), Housing Benefit (¬£500pcm) and a discount on my council tax bill meaning that I pay around ¬£30 per month instead of more than ¬£100. My rent costs ¬£670pcm. I live in a one bedroom flat. It’s not ‘flash’ but it’s certainly comfortable. It could be cheaper if I were to move, but this is the first truly safe home I’ve known. It’s my haven. I don’t have the money for moving costs and waiting lists are long for local authority-owned property.

I am extremely mindful of my privilege because I’ve been able to obtain some financial support from the Journalist’s Charity, the charity for people who work or have worked in that profession.¬†A friend wrote recently about her gratitude in having been able to turn to ‘Pharmacist Support’.

With the support of the JC, I have been able to have my hair cut and coloured this week for the first time in over a year. What?! I know, you might hardly consider a ‘hair do’ an ‘essential’. It was a scraggy, greying mess and together with my alopecia (I have female pattern balding) it was having a big impact on my self esteem. I am happier and healthier for it.

I was also able to visit the dentist, after many months, for a much-needed appointment, because I finally had the £20 needed to pay the fee I owed for a short notice cancellation due to illness.

I’ve been able to make an appointment to have my eyes tested next month, two years overdue, because I will have the money to pay for the new spectacles I need. They will be available at a reduced rate because I am in receipt of ESA but will not be free.

I’ve also been able to buy a number of healthy ‘ready meals’ – a ‘godsend’ while I continue to wait for social care support twice a week to be put in place, and continue to struggle to have the capacity for cooking. The healthy part is vital, particularly as I continue to try to recover from an eating disorder.

On a few occasions I was able to take a taxi to get me to vital hospital and GP appointments that I would otherwise have been unable to make due to my health issues, and also to return home from buying food from a budget supermarket. Budget supermarkets do not make deliveries.

Without that charitable¬†support … NONE of these things could have happened.¬†

I have received support from the St Margaret’s Fund who gave me ¬£200 towards the cost of a respite/convalescent break last year. I’m applying to another organisation in order to try to obtain funds for a similar break this year.

It is charity. I would rather not have to rely on it BUT at the same time I don’t feel ashamed about accepting it. I don’t find it easy to ask for that help but that’s because I know that in our society it does carry some sense of shame. People say things like ‘it’s not charity’ and they try to dress up ‘charitable support’ in some other way, as though accepting charity is a terrible thing to do. I’ve supported many charities, by donation and by fundraising, and I still donate, when I can, although just a pound or two here or there, supporting someone’s fundraising effort or buying a copy of the Big Issue. I believe in giving and I believe in sharing and I believe in a society that promotes opportunity for all, and which supports those who are in need.

Applying for the charitable support that I’ve received involves completing detailed application forms. I have often struggled to do this due to illness and have had to wait until such time as I could find just enough capacity to complete the task.

It’s struck me that much of the support available has a middle class tone. I was born and bred in a working class ‘cotton mill town’. I consider myself to be working class, but I know that many working class people would consider me middle class because of my privilege. I had a university education and have a professional qualification. I live in a middle class area, albeit on the edge of it and that of a ‘poorer’ area. I love literature, theatre, arts, read the Guardian newspaper and listen to BBC Radio 4. I consider those interests classless – I’ve loved all of them, with the exception of Radio 4, since my ‘cotton mill childhood’ (when I listened to Radio 1!) – BUT realistically I know that you need a certain amount of privilege to pursue them. It’s rare now that I go to the theatre because of the cost involved.

It seems that there’s privilege even among those who are poor. There is a charity offering financial support to ‘gentlewomen and artists’. I’ve seen others offering support to ‘gentlewomen’. Their definitions of what constitutes a ‘gentlewoman’ are undeniably middle class. They list ‘suitable’ professions and backgrounds, all of which you need to have had a certain amount of privilege to be able to claim. Being working class can considerably narrow one’s opportunities.¬†A minority of students at Oxbridge come from working class or ethnically diverse backgrounds and that’s just one example.

What happens if you don’t belong to a profession with its own charitable body? What happens if you don’t have the means to discover that there are charitable organisations who may be able to help you regardless of your status, professional or otherwise? What happens if you don’t have Internet access, the default application process is now online, or aren’t even computer literate? I don’t envy those who must throw themselves entirely at the mercy of the state, run by many for whom privilege is everything.

Two links to UK based web sites that may be useful:

https://www.turn2us.org.uk/ – much useful information for people struggling financially and there is a section where you can search for organisations offering grants

http://www.disability-grants.org/grants-for-disabled-women.html – a database of organisations offering a variety of financial support to women with disabilities – the main site offers details for men too!
N.B
I love ABBA but I adore Meryl Streep, that’s the reason for the link to the¬†Mamma Mia¬†film version of the song at the top of this post!

 

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.

 

‘Painsomnia’ and a painful mind

Yesterday was, to be frank, a bit rubbish. Pain disturbed my sleep on Monday and kept me awake for the greater part of the night. Lack of sleep caused other physical symptoms to flare; this ‘symptom siege’ coupled with fatigue, felled my body but allowed my mind the freedom to perform a fandango!

Fandango
noun
  1.  a lively Spanish dance for two people, typically accompanied by castanets or tambourine.
  2. an elaborate or complicated process or activity.

There were no castanets or tambourines. This was more lively storm, than jamboree. Grief was first to step onto the floor and whirled around with emotional pain, anger and depression in the ‘fandango’ that was my mind trying to process recent events and their relationship to the abuse and trauma I experienced in the past. This is, as I’ve said previously, a welcome process but it is painful. This is especially true when it occurs unbidden AND when support – which is twofold (someone/some people with the experience, professional or otherwise, to help you with the process and someone/some people who can listen, be kind and offer a hug – essentially comfort you) – isn’t readily available.

My interim therapist is on leave this week – 12-12:50pm on Wednesdays is my usual session time. I say interim because it’s not ideal. I’m accessing therapy via weekly telephone sessions via a mental health charity, while I’m continuing the, to date, 17 month wait for trauma therapy on the NHS. I’m due to be assessed on 10th July so that the NHS may decide what, if anything, will be offered to me.

I actually don’t have clear recall of all of the ‘processing’ that my mind got up to yesterday. ¬†A lot can happen in a short space of time – it can be a violent but relatively short-lived ‘storm’. My lack of recall could be because …

  • There was a lot going on – too much to fully take in
  • My memory was impacted by the low mood that came with the storm
  • In the absence of ready support, my mind ‘shut down’ or has ‘dissociated’ from the thoughts and feelings involved because of their traumatic/distressing nature

I know that suicidal thoughts occurred.¬†Please know that on this occasion no action is required in response to those; I am safe.¬†These were passive thoughts. There was no active planning, there wasn’t even a desire to die, this was a sense that perhaps suicide¬†might¬†ultimately be my only option because of the pain and the difficulties I face. The feelings passed and I don’t have any suicidal thoughts or feelings at the moment.

I know that I was at times distressed because of new understanding regarding my abuse. I know that I cried, which is still something I can’t do easily.

I know that at least one point I felt real anger about what was done to me. I very rarely feel anger. In fact, last year a psychotherapist suggested that I might translate anger into guilt and so feel that instead. This makes some sense to me but is something that I’ve yet to explore.

I managed to sleep better last night. I don’t know what caused Monday night’s severe pain. I don’t think I had done too much. The only ‘new’ activity was the wee stroll that I took up to the shop and the postbox at the top of my road. It won’t stop me trying again, but I have to be mindful that, at the moment, this may be a pain trigger.

I was able to get up within an hour or so of waking, and shower and dress. I was about to type that I was looking forward to a visit from a friend this afternoon … when she arrived an hour early … so here I am again, post-visit. We had a lovely afternoon, a really good natter and catch up. She brought fancy biscuits that went down well with our cuppas ūüôā and some lovely flowers. I really love flowers and was just thrilled.

We haven’t known each other very long, but I think this has the makings of a good friendship. I think of her as a ‘breath of fresh air’. It’s taken me a long time to understand that I have a tendency to attract people who are drawn to my energy and enthusiasm … but who want to ride on the back of it, weighing me down. This friend has energy and enthusiasm and a ‘grab life by the horns’ attitude to match mine. She’s keen to introduce me to some of her friends – one, a former GP, who writes and the other a fellow trauma survivor who loves arts and crafts as much as I do. I look forward to meeting them both.

I had thought of taking another wee stroll today, but decided against it, my friend was here for three hours. I’ve been doing laundry and chores, and writing, and I’ve still to do my treadmill time and prep a stuffed pepper to throw into the oven for dinner. I’m having it with some microwaveable broccoli ‘rice’… it’s good, honestly! Hopefully, I’ve just enough ‘spoons’ left to accomplish that.

I had some news earlier from the social worker that wasn’t great, but not terrible, we’ll cover that in another post.

Thanks for reading.

TTFN,

Heart x

 

 

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.

 

 

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

A whole lotta grief

GRIEF!! That word should be writ large with exclamation marks permanently attached.

That’s how it feels when it hits you.

Actually, grief is complex. Studies have been made to try to understand it in greater depth. There’s even a model¬†postulating that there are five identifiable stages of grief:¬†denial, anger, bargaining, depression and acceptance. I’m not sure that I can put myself firmly at any of those stages right now, but I suspect that I’m somewhere between depression and acceptance. I’m feeling the pain of grief – and boy, does it take your breath away – but, after last weekend, I’m not feeling so hopeless about it.

Why am I grieving?

I’m tempted to call mine Uber or Ultra-Grief because I’m not grieving for a single loss rather multiple (mostly major) losses and because the process feels akin to attempting a hardcore endurance event, like the Marathon de Sables¬†(If you’ve never heard of it, do¬†read about it¬†and let your mind, like mine, boggle over who would want to attempt such a thing :-D). I think I’ll go with Ultra-Grief, like my Ultra-Jigsaw, it seems a good fit … ha! See what I did there? Jigsaw … pieces … fit … oh, never mind.

How the flip do you even begin to recover and rebuild yourself and your life, when you’ve lost so much, let alone begin to grieve when you’re busy enough trying to survive?

Well … if you’re determined, proactive, resourceful, able to be gutsy and have words that help you to achieve many things … you think yourself damn lucky, for a start. At least, that’s how I look at it.

I lost all my family, all my close friends – they had either upped and left or I’d put huge distance between us, my much beloved and hard won career, my self esteem, confidence, my health and my fitness, my marriage, the chance to have children, my smile and even a lot of my hair (more on the latter two in the post¬†The Creature from the Black Lagoon) and I’d found myself in poverty, having lost any element of financial security. Make no mistake, I was lucky, I didn’t lose the roof over my head as others have, but at worst I couldn’t afford food and had to rely on the charity of strangers, likewise I couldn’t afford to heat my home and wore many multiple layers indoors that winter, including hat, scarf and gloves, and retreated to bed when that wasn’t enough.

Leaving my marriage gave me a certain amount of ‘head space’ – as once things were straightened out I was no longer being impacted by its dysfunction. I felt stirrings of grief when my marriage ended but I had to throw myself into finding somewhere to live and all manner of other vital stuff. Grief hit me like a train when a loved one – not a relative but the closest I had to it – died a few months later after a six week illness. Suddenly, I was alone in the world.

It was early last year on a remote ‘retreat’ for a convalescence break that I started to realise that I couldn’t ‘feel’. I’d found this wonderful wee place run by a psychotherapist for incredibly small prices and managed to save a bit from back-dated benefits and obtain a small grant from a charity, in order to go for five days. I ate simple but delicious home cooked food, slept well, walked in ancient woodland, worked in my art journal and undertook some therapy and related exercises. (As an aside, I am hoping to go again later this year.)

As I’ve often said on here I’m a natural ‘Tigger’.¬†I’ve boundless enthusiasm and I freely¬†enthuse about all manner of things – ¬†nature, architecture, art, theatre, and people, to name but a few. Yet, I began to realise that, for the most part, I couldn’t feel my pain, despite the enormity of it. There had been so much that I’d unconsciously shut it down in order to keep putting one foot in front of the other. I’d begun by discussing with the therapist how I longed to be able to cry. It upset me (not that I could show it) that I couldn’t cry and I felt like a cold fish as a result, something which is very much at odds with my character. I could, at a push, shed a couple of tears. My eyes did ‘fill up’ sometimes, but to sob was pretty much beyond me. I came to realise that through all the therapy I’d undertaken, and which I credit with saving my life after my initial disclosure, and also getting me through my marriage and to such a place that I was able to leave it, despite having no money and nowhere to go; I had never cried. I could discuss the darkest of experiences, detail abuse after abuse, and traumatic events such as my father’s suicide and his violence towards my mother, but I couldn’t ‘feel’ them. I intellectualised my way through therapy and I did learn a great deal and make a lot of progress. But, what I learned late last year is that, in the words of my current therapist: If you can feel, you can heal.¬†

Two things happened in the weeks immediately after my time at the retreat. My GP of a couple of years, with whom I’d developed a solid relationship, particularly in the preceding six months, relocated to a new area. Two weeks later, the support I’d been receiving for six months from a housing support officer was cut overnight. It’s a short term service and was put in place when I was at risk of losing my home. Having that consistent support for the first time in my life, going on retreat and feeling ‘peace’ for the first time in my life, and having the realisation about ‘needing to feel’, all seemed to instigate an ‘unlocking’ in my mind.

I welcomed this at first, I was ready to take this on, and work through whatever was to come. Until suddenly, I was again without support …

Since then I’ve been increasingly feeling grief, but without support and in very difficult circumstances, I wasn’t able to cope with it. A close friend died just before Christmas. She had been ill but was expected to recover, she was only in her late forties. She was the best friend I’d made since my moving to my adopted home city six years earlier. Other friendships were made, but when I ignored my ‘gut feeling’ again feeling that this ‘beggar’ could not be choosy and should take what was offered. My late friend and I knew each other for a little over two years. The time we could spend together was curtailed by our respective illnesses. In some ways I hardly knew her but we connected and there was great deal of potential in the friendship. I’ll always remember her sitting for me as I was teaching myself to draw (she was a talented and exhibited artist), my first life model. Alas, I was so nervous, it wasn’t my best work! Discovering that she’d remembered me in her will, floored me. I genuinely miss her terribly. I’m not one to bemoan ‘Why me?’ Stuff happens.¬†Still, I found myself asking why, if I had to lose a friend, it had to be her. I don’t feel comfortable admitting that, I wasn’t really wishing someone other dead, was I?

I cried at her memorial service, more freely than before. This was because I know how much of a loss she is and how much she could still have lived. It was also because of my own grief at losing her from my life. What I didn’t expect as I sat in the large city centre church, which was packed, and listened to all the wonderful words and memories that were being said and shared about her, and as I met and spoke with several members of her family afterwards, was the barrage of grief of a different kind that assailed me. My friend had faced many challenges in her life. She was diagnosed with bipolar disorder, which had a huge impact on her life, medication used to treat it ultimately caused kidney failure which contributed to her death.

That day I saw what you can achieve, despite challenges, when you are loved or more specifically when you grow up in and continue to be enveloped by a loving family. It was wonderful to behold … and it was also agony. It took my breath away. After spending around 90 minutes at the small gathering for family and close friends after the service, I realised that I really didn’t feel right. I felt ‘spacey’ and had a nebulous sort of sense that I wasn’t OK, that I was no longer coping. Leaving some time later I set off for home. I intended to pick up a few errands en route before catching a bus the rest of the way. I was aware of the first few minutes of the walk and then arriving at the mini supermarket where I intended to shop, but not the 10 minutes in between. In the shop I wandered and wandered aimlessly, returning again and again to stare at the same things but I couldn’t seem to process or complete the task. I remember seeing a Big Issue seller outside the store and rummaging for change in order to buy one, only for him to have completely disappeared a moment later. I wondered if he’d even been there in the first place. The bus stop was close by but I had to cross two busy roads to reach it. I remember waiting to cross the first and there was a bus about to pass in front of me. I remember seeing it and seeing myself, in my mind’s eye, going under its wheels, although I had no thoughts of suicide at the time. Although in my mind, it was vividly real. I felt shaken, dazed and disorientated. I know I caught a bus and got home, but I don’t know how. It took me four days to re-orientate myself.

Seeing my dear friend on Saturday after so many years and feeling such connection is SUCH a happy thing. I’m loathe to describe it as bittersweet, because it was SWEET. SWEET, SWEET but challenges did arise from it. I feel grief that so many years were wasted when we could have been closer. I feel grief that I wasted time on some other friendships where there was no real connection. I feel grief that the memory of her knowing that I was unhappy as a teenager and was there for me¬†and¬†hurt for me, was somehow lost. I feel grief that I wasn’t able to confide in her – and through her, her lovely Mum – to greater depth. The past is the past and cannot be changed so there is no point in dwelling on it, still the sadness demands to be acknowledged and that perhaps if I had, I might have recognised that I was being abused and found a way out of my family much earlier, instead of in my thirties, by which time much more damage had been done.

Despite the grief, I am not AT ALL sorry that she and I discussed these things, and I hope in time that we’ll discuss more, because it is validating, it is helpful for me, and it is something that has the power to help me to heal.

Before the State of the Heart address (thanks you know who, for that inspired phrasing) that was Heart Set on Dying?, grief, when it hit, was unbearable and I shut down as far as possible in order to cope and keep myself safe. It was unbearable because I was alone with it and had no sense of belonging anywhere or being ‘tethered’ in any way. I’ve felt it in a big way once since Saturday, it was undeniably very hard but I went through it WITHOUT shutting down. I truly hope that those of you who read this who have stepped up for me in recent days can understand just what a difference you make.

I don’t know yet what the future holds in terms of dealing with this grief. I don’t know whether I’ll be doing it with my current therapist (voluntary sector) or whether if NHS trauma therapy is offered, now that I’ve reached the top of the 18 month waiting list and am due to assessed next month, that will be the place to do it, or whether I’ll seek out specialist grief services such as those offered by Cruse. I’m still finding my grieving feet …

Thank you for reading. This is waaaaaaaaaaaaay longer than I had intended.

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.