Heart REset on living + SEVEN WEEKS

I think it feels as though more time has passed since that wondrous day following that fateful post. Certainly a LOT has happened.

I have always prided myself on capitalising on both hope and opportunity and I hope that this is evident.

I posted an update 14 days after my friend’s visit and I went on to post, on the 26th June, about the BIG PLAN that I was formulating and putting into action. I called it Operation Thrive. Here it is as it stood then, at that point all Priority 1 tasks were already complete or underway:

As at today, all Priority 2 tasks are now either complete or underway … yay! I have also taken a couple of tentative steps towards actioning some Priority 3 tasks.

I have had no further support since my friend’s unexpected intervention on the 10th June, except for the monthly visit of the woman I pay to help with cleaning tasks. I had three relatively good weeks then had three very challenging weeks due to a number of stressful events and by the end of the week before last was again struggling with suicidal feelings partly because I was overloaded and lacking support, but also because of the apparent impact of perimenopausal issues on my mood (I’ll cover this in a separate post). However, I managed to hold on and pulled through. Last week was altogether better and had a moment of real high! I’ll cover that in a separate post.

Priority 1:

• I am writing most days – if not here, then in my journal. I haven’t done any work on my novel project recently but still without support my capacity is much reduced and there’s only so much that I can do. I am doing as much as I possibly can.
• I have felt much less lonely overall, although I am aware that I am still largely isolated. In the seven weeks since my friend’s intervention, I’ve had one other visit from a friend and maybe five phone chats. I have taken the initiative and I am connecting much more with friends (almost all of whom live at a distance) via social networks. I post daily updates. I reach out when I need support and usually receive comments with virtual (((hugs))). Sometimes someone will chat via a messaging app. I am keeping in touch and not allowing myself to withdraw. One friend hopes to visit in September/October which would be lovely. Today has been difficult. I reached out specifically asking for contact yesterday and today, but there hasn’t been anyone around for anything more than a virtual (((hug))) or wave. When loneliness creeps in it does make things harder, but I keep busy and distracted as much as my ‘spoonieness’ will allow. At the worst moments I hunker down for a while. My calendar is as full as I can sensibly make it for the coming month. Perhaps by the end of the month or the start of the next, we can hope, social care support will finally be in place to pick up the slack, allowing me more freedom to get and out and build more of a life, and giving me regular twice weekly contact at home.
• Rarely are two days the same so daily routines do vary but are generally good now. I’ve only failed to shower on a handful of very difficult days. I am mostly on top of chores – but need help to catch up with the mountain of laundry and some cleaning tasks. Luckily, I am very tidy and organised and that helps a lot.
• Self care has improved steadily in the last seven weeks and exponentially so in the last week following a couple of significant appointments (more in a separate post)
• My ability to get out and about has also approved steadily and continues to do so. I am  happy with my progress.
• The routine inspection by my landlord’s agent was successfully carried out some weeks ago. My landlord himself, who lives overseas, will make an annual visit at the end of next month. If support isn’t in place in time, I will no doubt stress and overstretch myself ensuring that the flat is in entirely immaculate order.
• I’ve been to the GP a couple of times and had the necessary tests. There are ongoing issues, I’ll cover that in a separate post at some point.
• I am still without support for my eating disorder. However, I have made progress by myself. Progress has been steadyish and, more recently, certainly significant. I hope to join a local branch of OverEaters Anonymous but at the moment I don’t have the ‘spoons’ to attend its evening meetings. Evening outings are only possible if I rest for most of that day and each Tuesday I’ve had other commitments. I’ve recently discovered that Beat, the eating disorder charity, runs an weekly support group online. I’ve registered and I’m waiting for my registration to be processed. I will write a separate post about my weight and eating issues; they warrant it.
• Psychotherapy/Trauma Therapy – there is a lot to say about that! Suffice to say for now that some significant progress has been made both in terms of provision and with my interim therapist.

I have resumed physiotherapy treatment – again a separate post is warranted. My treadmill routine got derailed by a lack of ‘spoons’ and being so busy elsewhere with appointments but I am determined to restart it on Monday.

I saw my dentist last week, had a fabulous appointment, I will blog about it soon and its relation to my recovery from abuse. I have a further appointment next month.

I’m due to have my eyes tested and get much-needed new specs next week.

I should be making a renewed application for Personal Independence Payments (P.I.P) in the next two weeks.

I have tried to return to a weekly support group for women who’ve experienced mental illness/trauma in the last couple of weeks but was thwarted by my ‘spoon’ count. Third time lucky this week, I hope.

Still without support, it is very difficult to keep all the necessary balls in the air. Some things are working well, while others are not. Some things work well for a time then fall by the wayside because something else has to take priority. The advent of support should see the emergence of some consistency and sustainability … both of which currently feel akin to the fabled gold at the end of the rainbow!

Thank you for reading. I’m sorry that this turned out to be more than a bite-sized post. Either I am just a waffler or there really is masses going on! I actually feel like I’ve written a lot but failed to convey all that is going on. Perhaps because I am tired.

Comments as ever are very welcome and appreciated. Do let me know that you are reading and that I’m not just talking to myself 😀 .

Heart x

 

Boarding the Social Care Merry-go-round

Hello again 🙂 !

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.

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

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

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

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

 

A look at the BIG plan …

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

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

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

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

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 – plan 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 🙂 !
• 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

 

 

 

Heart REset on living (a.k.a the power of hope)

I do love that title but I can’t take the credit for it – thanks my friend for coming up with it, it’s inspired, you know who you are.

Well … what a difference a day makes!

Writing the post ‘Heart set on dying?’ on Friday was excruciating. On Twitter, I likened it to performing open heart surgery on myself. Certainly readers who are familiar with my blog noted it to be my most ‘raw’ post to date. It left me feeling very exposed. I even toyed with the idea of deleting the post an hour or so after publishing it, which is, I think, a first. I’m not afraid to explore difficult stuff, but I’ll do it with a smile, with humour, anything to deflect, otherwise I might be troubling you; you might judge or reject me.

You might think me weak.

I can feel a barrier in my mind when I try to really capture my feelings around that thought but I know this much; it’s a fundamental for me. Being consistently told when I was growing up that I was weak and lesser, in a multitude of ways, had a huge impact. I never wholly believed it, a life-saving grace, but I was deeply affected by my family’s apparent belief in it and it has left me with a deep-seated fear of being deemed weak.

Primarily, I wrote that post first and foremost to try to release the pressure in my head; its volatile contents were fit to explode. I did also hope to connect in some way, otherwise I could’ve just scribbled in a notebook. I didn’t, I chose to write here and publicly post. Secondly, I’m uncomfortable with the idea of dying without having put my ‘story’ out there, by that I mean without someone at least knowing what my life has really involved and who I really am. Third, I’d no expectation of being able to reach someone in a way that resulted in meaningful connection but the spark within that fuels me, held hope of it.

I knew there was every likelihood that my teenage best friend would read that post, as I introduced her to my blog earlier this year in what was a tentative step on my part to try to decrease the distance that I had put between us. I did not expect that she would read it late that very night and turn up on my doorstep the next day!

Yep, she did.

She lives almost 200 miles away – something like a six hour round trip –  and we last saw each other in 2002.

We use a messaging app to chat. When, yesterday, a photo of my friend, who is not given to selfies, popped up, the background of which looked like the distinctive city where I live, I was a little bemused. I assumed I’d got it wrong, or that it was an old photograph. I could see that she was writing a further message and calmly awaited further explanation.

I am on my way to put the kettle on … it began.

I gasped, for a moment I thought she was kidding before swiftly considering that she would not joke having read that post, which I knew for certain she had.

***

So, we hadn’t seen each other for 15 years – we’ve known each other for 33 years.

I don’t think a year has gone by without some sort of contact, even if just a scribbled note in a greetings card. We perhaps connected on social media between three and five years ago, I can’t remember. We’ve certainly chatted frequently online for the last year, if not longer than that. I curse my addled my memory here for not being able to remember.

They say that the best of friends can pick up where they left off, no matter the time that has elapsed, as though it were only yesterday. I’ve heard this, friends have said it of my friendships with them, but I hadn’t seen it until yesterday.

“Let’s have a cuppa”, she said.

“I haven’t got any milk”, I said, genuinely appalled … and fearing that I could never again set foot in our Lancashire homeland having committed the cardinal sin of not being able to offer someone ‘a brew’.

“You have now”, said she, revealing a pint of milk with a familiar flourish, swiftly followed by teabags, coffee, a choice of sandwiches, strawberries, chocolate, fresh juice, and dinners for the following three nights courtesy of M&S. She’d remembered that I’m vegetarian. There was also tissues  – in case we got emotional – and the softest, most ‘snuggle-up-able’ ‘comforter’ in one of my favourite colours. That girl got it covered!

If you read Heart set on dying? you can probably imagine that my socks had been well and truly blown off by this time.

Given the distance that I put between us, given that she was the friend that I seemed to have most feared confiding in as my ‘car crash’ of an adult life unfolded, I was staggered to realise that I felt comfortable, that there was not a moment of awkwardness. We chatted and meandered about my flat, like it was something we do every week.

That fear of confiding seems to have been rooted in shame, a perception that she must surely see me as a ‘failure’, a ‘dropout’ or a ‘loser’. She and I went through our teenage years together, closely entwined, with different dreams and ambitions but with a path mapped out through O level and A level examinations and on to the hallowed territory of university. Amid the abuse, I fell at the first hurdle and I had long been left behind by the time I fought my way back onto the path and ultimately made it to university. Perhaps I feared her reaction most because she mattered most, I don’t know. I am sure that it will be healing to explore those feelings in future therapy. For now, they are difficult to access, I’ve had to ‘shut down’ a great deal over the years in order to continue to put one foot in front of the other. Now I know that I am accepted, not judged but embraced. It’s a new feeling and I sense it will take some time to embed itself and take root.

I was shocked to be reminded that she knew more than I thought, as she recounted, among other things, my often reluctance, and fear of, going home. She knew, back then, that I was unhappy, and that my surviving parent was ‘odd’ to say the least, but nothing of the violence or details of other abuse that was the basis of my daily life. Abusers school in silence. This was the first time I’d discussed my situation, my abuse, in any detail with someone who was in my life at the time. It was emotional, it was powerful, it was tough but I was really glad to do it. It was validating, and it’s also helping me to begin to fit together some of the pieces of that ‘Ultra Jigsaw’. I’d like to write more on that, but I am time pressed today and I have a mountain to climb tomorrow and I need to prepare for it.

I wish I could tell you my friend’s maiden name. I have always known it but only this afternoon did it suddenly loom large in my mind making me gasp and then laugh. I am not superstitious but to think that through those terrible teenage years amid the horrors of my abusive home life, I had a best friend with a name to suggest that I should, that I could hold on to her. We used to read our horoscopes with glee and anticipation back then, and asked burning questions of a sort of a pendulum constructed of a necklace and a ring, you know that thing? You’d think they might have nudged me to note the obvious!

Thank you to those who read ‘Heart set on dying’, and sent messages of comfort and support. Please know that you are valued.

Yesterday’s visit meant more than I say and has given me yet more still. I began to capitalise on it immediately and when I’ve the ‘spoons’ , and the time … there is always so much to do, I will write here, in explanation.

Thank you, as ever, for reading. Comments welcome.

Heart x

 

 

 

 

 

 

 

 

 

 

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.

Getting my s*it together, as I believe is the expression, and publishing a post!

WordPress loves to remind me how many posts I’ve drafted but not published. I know this, dear WordPress, it’s not for the want of trying. Today, I decided that I would prioritise writing a complete post AND publishing it, over just about everything else.

My current situation is so complex and there are so many things happening that it’s impossible to explain it in a few lines, even though writing about it and sharing that writing is very helpful to me. Doing so takes a lot of time and even more energy, and ‘spoons’, that’s chronic illness shorthand for energy and ability to function, click the link for an easy explanation), are currently in very short supply.

Yesterday, I managed to shower and dress in order to be ready to answer the door to receive a delivery from a parcel courier. I have had to force myself to allow ‘Pharmacy Bob’ (who I’m certain is the antithesis of his more famous namesake) to see me in smelly dishevelment but fear negative judgement too much to ever make a habit of it with others. Afterwards I had to get back into bed because I was so physically depleted by chronic fatigue and pain. I longed to be productive, there were things to do, so much I wanted to do; it was a struggle to limit the impact of my lack of capacity on my mood. I managed to get a bowl of cereal and kept hunger at bay for the rest of the day with dry crackers, risking a flare up of a painful stomach issue that occurs if I get too hungry. That seems to have been triggered when struggling so much last year I went, at worst, eight days surviving on only sips of water. (I ended up in A&E some weeks later with urinary retention, a complication thereof, which is, I discovered, a medical emergency.) I didn’t sleep after my return to bed, despite having only managed a little over three hours the previous night, but I rested and by evening, had at least the capacity to watch the BBC Question Time election special and engage in some lively political ‘repartee’ on Twitter, as it aired!

I’m aware that to some people that much of this post could sound like I’m moaning, feeling sorry for myself, demonstrating narcissism, or focusing on the negative. Actually, anyone really getting to know me understands that I am relentlessly positive and also hugely enthusiastic about grabbing life by the horns and making the most of it. Call me a snowflake, but sometimes it hurts to be thought of as otherwise.

We so often shy away from hearing difficult stuff, we hyper-focus on the positive, often because we realise the difficulty or horror of something, and perhaps that a positive outcome may not be possible, and sometimes we don’t know what to do or we can’t deal with that so we shut it down, don’t really listen and we fire out the positive platitudes.

I love blog comments, tweets and interactions in general. I really do. I love hearing from you. Please just don’t tell me to be positive, if you’re tempted, even though I know that you mean well. If you want to be supportive, hear me. Tell me that you understand that I’m facing grim circumstances. Tell me that you appreciate my determination to try to keep going. Offer help if you’re able, and I appreciate capacity for this can be limited in all sorts of ways, anything from a friendly word on a postcard, a poem or a film you think I might love, or a chat to a ‘care package’ or a visit. I’m fighting the urge to delete that last line – and I’m going to leave it there however uncomfortable it makes me feel, the reasons for that are for another post.

I’d woken, yesterday, with a very red, swollen and itchy face. It’s the second time that’s happened in the space of a month, but it hadn’t ever happened prior to that. I’ve had eczema, relatively mildly, since I was child, although as a child my family didn’t recognise it as such. I was screamed at when I scratched, punished if I dared to get blood on my nightclothes or bedding, and asked if I had fleas. It’s only really been in the last few years, since I entered my forties, that I’ve begun to experience severe episodes of eczema, at first on my hands, later on other parts of my body, and then on my face, particularly around my eyes. At first I assumed that this month’s sudden flare up was eczema, only the worst to date. The skin was red, itchy, and a little scaly. The area around my eyes was also puffy and swollen. I used the usual emollient treatment for eczema but it burned and felt sore. It took several days for my skin to begin to settle and clear up. The episode that began yesterday got me thinking. Severe redness and swelling/puffiness were the main issues, the majority of the area was not itchy and it isn’t scaly. I suspect I’ve developed an allergy to a skin product that I’ve happily used for some time, and is in fact the only thing I found that actively helps to reduce the impact of my Acne Rosacea. (Yep, I’ve got that too. Apparently, chronic conditions like to party together.) I’ve only used the product twice recently, the night before the two reactions. Phooey! I would get it checked out by a doctor or a pharmacist – but getting to see either is an issue just now, one that I’m working hard to surmount – more on that, again, in another post.

My fingers are also being attacked by pompholyx, and feel as though they’re getting more raw and painful to use by the second. I also have the more usual eczema on the rest of my hands, although that flare up does, mercifully, seem to be easing. Added to that I’ve had a infected thumb for a few days, and I’ve had an extensive flare up of something – again, I think this is eczema – on my neck and chest for several days. My skin is a rebellious teenager – raging out of control.

My ‘spoon count’ is generally very low just now because a series of challenges including bereavements, divorce, low income, the emergence of Post Traumatic Stress Disorder – involving flashbacks, dissociation, nightmares, depression and suicidal feelings, and the absence of sources of support. These have left me unable to maintain the rigorous regime of self management that keep me ticking over as best as I possibly can while still living with chronic illness – that’s ongoing illness for which there is no cure – it’s not my fault I got it, it’s just something that can happen to people. I’d barely been near a doctor bar the odd routine visit until it happened to me, then suddenly my medical notes looked like War and Peace in triplicate.  Chronic illness can become acute and be life-threatening, often it’s debilitating and life-altering. It may not kill you but it can decimate your life.  My self management regime includes physiotherapy exercises (very many ‘reps’ per day), graded exercise, diet management, medication, meditation, and a lot more. Without that rigorous regime, and with added stress, difficulty, lack of available support etc, the conditions flare up and begin to rage. It’s fair to say that I’m far from at my best just now … she said in the best tradition of understatement :-D!

Today, I’ve managed to shower and dress in order to receive a further package. Beyond that I’m prioritising this blog and keeping in touch with friends online because isolation is a major issue just now that’s jeopardising my safety. More on that too in another post!

Taking a break just now to nip the loo stole another a ‘spoon’ because, as is often the case, I needed to clean it due to the, shall we say, explosive emissions associated with the condition Bile Acid Malabsorption. Sometimes I leave it a while, when just getting to the loo was challenge enough, sitting on the fear that someone somehow will want to use it in the meantime!

I have no compunction about discussing toilet ‘doings,’ pain, ‘oozings’, ‘leakages’, ‘blisterings’ and boils, despair, compulsive binges and skin picking, and urges for self destruction; I make no apology for doing so. That’s not to say that it’s easy to do. It can be really difficult because you’re often met with negative judgement and a lack of empathy. It’s not the most fun when you’re positive, enthusiastic and determined in the face of adversity, hearing that you’re lazy, boring, narcissistic, not trying hard enough or ‘milking’ the system …

I believe that education, communication and understanding of experiences outside of our own are vital to society, and speak and share accordingly.

I need to have something to eat today. I can make a bowl of porridge, but if I want to eat more than that then I will have to cook more extensively. I have the ingredients to make a veggie chilli ‘non carne’, but it will require a lot of ‘spoons’. I hope to have a phone chat with a friend later. I also hope to manage to do a load of laundry and ‘reboot’ (empty and reload) the dishwasher. I’ve yet to have a drink (Edit: I’m drinking a cup of tea as I do a final read through) and, much to my discomfort, I left my bed unmade to save a ‘spoon’, but finally I have something to publish, and another step on the road to telling my story has been made.

This has taken longer to write and waaay more ‘spoons’ than I hoped. Even telling you where I am just now, with little mention of how I got here takes an age. Arrrrgh! Admittedly, fear of people not ‘getting it’ probably does lead me to say more than I need.

Thank you for reading, I really appreciate it. I hope to continue with more frequent, shorter posts. Things are happening. I have a lot to say! x

 

Self-styled ‘abuse survivor’ … and proud?

I came across this statement on Twitter recently. It pulled me up short.

I hadn’t gone looking for it or anything like it. It appeared in my timeline, ‘retweeted’ by one of the people I follow.

As I read the words of the tweet, I remember thinking that I’m a ‘self-styled’ survivor. I also remember that I didn’t have the slightest urge to rage at this tweeter and that made me smile. There have been times when I would have felt very angry indeed, as were many of the people who replied to the tweet on Twitter, hurt on behalf of all ‘survivors’, and so got myself very worked up in spirited defence.

It’s perhaps a measure of how far I’ve come that I was able to quietly reflect and focus first on reaffirming for myself why I sometimes choose to declare that particular status and, with another smile, realise that I feel confident in it. I have gone on to wonder in the days since I read it what might have prompted such a statement from the author of that tweet. It could simply be the work of a ‘troll’, someone who gets a kick out of making inflammatory statements online seeking a reaction, particularly one of hurt, from others. I deliberately chose not to look up the author of the tweet, for the sake of self-preservation, at a vulnerable time. However, since writing the bulk of this post I have now taken a look. I saw that the author defines herself as someone who writes about false accusations and ‘pseudo victims’. Sometimes people make things up, some people do generally like to play the ‘victim’ in life. I’m not deriding the woman, I haven’t looked deeply enough to know what she’s really about. I’ll just say that I think the tweet that prompted this post was misguided.

However, this post isn’t really about that tweeter. This post is primarily about me. I know, I am such a narcissist …

I wanted to write this post because communication is hugely important to me. I believe that good communication is fundamental and can be a real force for good by facilitating greater understanding, Unfortunately, in the years since my status as a survivor of abuse became apparent I’ve learned that many people don’t care about much beyond themselves and their own. Empathy and understanding are too often in short supply, while intolerance and ignorance proliferate. What are prejudice and intolerance if not a lack of knowledge, more specifically a lack of understanding and the absence of empathy? Add fear to ignorance, and watch intolerance and prejudice spread like the proverbial wildfire.

I want to reach out to those people who do care enough to want understand more than their own immediate experience … those who can see past the end of their own noses. I know, now who’s making inflammatory remarks?! What the hell: I’m not perfect and I do despair of reluctance to take a broader view.

I don’t wear the label ‘abuse survivor’ like a badge. It’s not who I am or what I’m about but it is a large part of my experience. I was abused for many years, and beyond childhood. The effects of those abusive experiences have been devastating and have pretty much decimated my life – wrecking my health and costing me, among other things, a career, relationships and a family of my own. I don’t say that lightly. For me, to ‘whinge’ is to cringe; I’m relentlessly positive, driven and upbeat and find it difficult to be otherwise. I’d rather pull out my own fingernails that have anyone think me a negative or downbeat sort of person.

I don’t declare myself abused and decry the terrible impact of it for fun or attention. I say it because those are the facts and because the impact was so great that recovering myself and my life became a full time occupation. I use the term ‘abuse survivor’ when I need to begin to explain my circumstances and also to connect with other survivors.

My Twitter bio. includes the phrase ‘abuse survivor’. Despite the title of this post, I actually don’t see myself as being a ‘self-styled’ abuse survivor. I am a ‘self-styled’ Wordsmith. That word, a cheeky nod to my love and life of writing, also appears in my Twitter bio. Describing myself as an abuse survivor is nothing more or less than a statement of fact. I use it on Twitter because it’s there, and via WordPress blogs, where I’ve found it possible to connect with other survivors – for mutual support and learning. It’s not to say ‘oh poor me‘ or ‘oh look at me‘. Given the amount of shame that survivors feel – that one is pretty much universal – that’s hardly likely. It is to say here I am, this is a part of my experience and I’m here if you’d like to connect. 

Where does pride come into it? Well, I imagine that ‘survivor pride’ … no, as far as I’m aware that isn’t a thing nor am I trying to make it one. I use the term loosely for the purposes of this blog post only … is something akin to Gay Pride. Once again, it’s not about narcissism. We don’t have ‘Heterosexual Pride’. We don’t have it, because we don’t need it, anymore than we need ‘White Pride’. Homosexuality, however, has long been the subject of oppression, abuse, ignorance, intolerance and prejudice. It remains illegal in parts of the world, and persecution is not uncommon.

If I’d held on to my sense of self faced with that lot, I’d be damn proud too.

And that’s how I feel about being proud to be an abuse survivor. I can’t change what happened to me, it was vile and appalling and has come close to killing me more than once. I’m not proud that it happened but I’m proud that I am not bitter, that I am a kind, caring, empathetic, inclusive, creative, vital … and witty(!) … person in spite of it. I’m extremely proud that I’ve achieved that after such terrible experiences and in an ongoing fight to thrive in the face of a scarcity of empathy and appropriate support and resources.

Like so many things in life, a ‘one-size fits all’ approach does not apply to ‘abuse survivors’. We are not a homogeneous group. Each survivor’s experience of abuse is different – abusers too have abuse in common but are otherwise varied. Abuse is often a life-altering experience with recovery sometimes life-long, but there are some for whom the impact is smaller. There’s no right or wrong way to be an abuse survivor. It is what it is according to each individual’s experience.

I have encountered enormous strength of character, courage and kindness among survivors. But that’s not to say that these people are ‘saints’. They are real people – as complex and varied as anyone else – who happen to have also endured something truly terrible. Abusers don’t discriminate, they’ll abuse whomever or whatever they can get. Abuse happens in all areas, all walks of life.

I could describe in graphic detail some of the abuse that I have experienced and that of other survivors I have got to know, either through work or friendship. I have knowledge that bleach couldn’t sanitise, but bluntly disgorging it here to attest to the veracity of the ‘abuse survivor’ would be crass. That’s not to say that I don’t think greater awareness of what people have to endure, survive and how they can struggle to go forward in life, and why, wouldn’t be helpful.

I believe in freedom of speech. That author of that tweet exercised hers. I’m happy to say that I’d fight for any abuse survivors right to declare themselves as such, and for their freedom of speech.

I feel like I just ran a marathon

9:55am I’m in bed, heart racing and body exhausted as though I’ve just collapsed over the finishing line at the end of an arduous race. 

I’ve just completed my first session with my trauma therapist since the 8th of February. I’ve phoned in for our regular session (this is a voluntary sector trauma therapy service that is delivered by means of a 50 minute weekly telephone call) most weeks in the intervening period but have been unable to utter a single word, not even so much as hello, and have felt utterly compelled to hang up. This is not a natural course of events for a chatterbox like me who is ordinarily an engaged and proactive therapy client.

Fear, even terror, and shame forced the silence, exacerbated by my having not yet established a relationship with my therapist, as I only became her client at the very end of last year. There’s much to unpick within that fear and shame. In the simplest terms, it’s fear that, after the terrible events of last year, there is now no hope of receiving any support, and shame at being who I  am, where I am. The terror is at potentially being hurt again by a ‘caring professional’ and, worst still, that if no help is possible, my fight to not only survive but to thrive could have been in vain. 

It’s taken a lot of work on my part to get to the point where I could today regain my voice. For a moment there as I wrote that I had the urge to cry hang out the flags … I did it! 

I may write some more later about the content of today’s session but my focus here is on the result of the session.

I feel glad that I was able to reconnect with my therapist today. We don’t yet have any real connection and I wish we could have talked for so much longer than 50 minutes but it was something, and it was helpful if only in as much as I could share some things and feel heard. 

I feel a renewed determination to try to finish the, to date, 75% completed pair of blog posts telling the story of the last year. In order to write about it, I must confront the events of the year and that is proving to be traumatic. 

Realistically, I’m unlikely to wotk on those posts today as I’m shattered having only slept for 90 minutes last night. I’m genuinely struggling to keep my eyes open and my brain focused. I’m looking forward to an early night. I hope to work on completing those blog posts tomorrow.