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 

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.

 

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.

Tweet1 12 June 2017

Tweet2 12 June 2017

Tweet3 12 June 2017

Tweet4 12 June 2017

Tweet5 12 June 2017.JPG

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.

Tweet6 12 June 2017

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.

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

 

Successes, Safety and a Salient Staircase 

Sleep was brief, around four hours, but surprisingly restorative. I didn’t have the ‘spoons’ for this morning’s planned soak in the bath but was able to shower thanks to my bath board. It’s a disability aid that I was reluctant to take possession of last year but which is actually worth its weight in gold.

I spent some time menu planning – breakfasts, lunches and dinners – yesterday evening. Having a plan is beneficial on many levels not least in beginning to tackle my eating disorder, promoting self care and maximising my tight budget. Variety, satisfaction and healthy options are key to the former. As I said here, when ‘spoons’ run low cooking so often falls off my to do list. I’m making it a priority as one of my first steps out of this current crisis. Some old favourites will feature on the plan together with some new recipes. Here’s a selection:

  • Baked eggs with mushrooms and spinach 
  • Courgette and potato soup
  • Courgette muffins
  • Chocolate orange porridge 
  • Three bean pate
  • Porridge Berry Bakes
  • Sweet potato wedges with homemade houmous 
  • Mushroom and herb pearl barley risotto 
  • Quesadillas – most likely cheese and bean 
  • Lemon and dill courgette with broccoli rice, houmous & salad

Yes, I did buy a large box of ‘Basics’ mushrooms and large bag of ‘Basics’ courgettes and have been hunting ‘spoonie’ friendly courgette recipes!

Today’s breakfast was an old favourite from the Hairy Dieters – crumpets with warmed berries, fat free Greek yoghurt and a drizzle of honey. 

Lunch was herby mushrooms and tomatoes on toast, followed by a banana.

In case you hadn’t noticed, I don’t eat meat. Dinner was a bowl of the Chilli Non Carne that I made this evening. My recipe varies according to budget and what I’ve got in. This version used the following:

  • 1 large red onion 
  • 1 small red bell pepper
  • 1 small green bell pepper 
  • A handful of mushrooms 
  • A carton of ‘Basics’ chopped tomatoes 
  • A tin of ‘Basics ‘ baked beans 
  • A tin of ‘Basics’ red kidney beans 
  • Tomato puree
  • A cheat’s sachet of chilli seasoning together with my own ‘everyday’ seasoning 
  • A packet of Granose dried soya mince.

I bought several packs of the soya mince while it was on offer and much cheaper than Quorn  or generic chilled varieties. You reconstitute it with boiling water then treat as normal. It does not look appetitising when first made up but tastes good in the finished product! 

I’m really shattered and virtually out of ‘spoons’. Emptying the dishwasher of last night’s load and putting in today’s dishes has to wait until tomorrow. The chilli prep and cooking takes a fair amount of ‘spoons’, and by the time I finish I’m very sore, luckily it will make a few meals. My Fibromyalgia had already rendered me very stiff today, so when I stand up I can’t straighten up at first and have to painfully unfurl pace by slow pace. In these moments I laugh at my predicament to help me to deal with it. 

I’ve just enjoyed watching MasterChef. I do admire the cooking adventures of the participants. I smiled tonight at the appearance of ‘whey-glazed carrots’ … they’re waaaay beyond my culinary ambition! But seriously, if posting photos of your daily meals and basic cooking efforts seems dull or even narcissistic, I can say only that it’s integral to my thrust for recovery. I can’t remember the last time I ate three good meals in a day, let alone made three virtually from scratch. Posting in this way, in celebration of my efforts, is motivating and a useful record of my progress. Perhaps, somewhere along the line, my posts might help someone else too. 

9:50pm I’ve been pyjama’d and under the covers since a little after 8 but I’m determined to complete and publish this post tonight. I’ve had to rewrite half of it after WordPress gobbled it and refused to give it back. I suspect I’ll sleep tonight, but it might be an idea to take painkillers to try to limit the risk of #painsomnia. 

I was able to meet with my advocate this afternoon for the first time in over two months. This is a huge deal. I’ve made many attempts to meet with her since mid February but overwhelming trauma symptoms forced me to cancel each time. She visited me at home together with one of her colleagues, both were so lovely. I had written notes ahead of their arrival. We had a productive meeting  It felt safe, and to feel any sense of safety at all, after the devastating events of last year, is progress. I’ve yet to regain real hope for the future – something I thought couldn’t be shattered, after all I’ve survived so much, but last year’s events broke me – however, I’m focusing on an idea that was once very helpful to me … You don’t have to see the top of the staircase to take the first step. 

My advocate and I have made a plan of initial steps. We’ll speak on Monday and arrange a further meeting. 

 

ULTRA Jigsaw

The experience of trauma, particularly abuse, can fragment a life, and a person.

The process of recovering could be likened to tackling a jigsaw or crossword puzzle, the number of pieces or the complexity of the clues individually determined, as each individual’s experience of trauma is unique. Recovery too means different things to different people and can take many forms.

My recovery jigsaw is complex. I opened the box and tipped out 1000 puzzle fragments to be painstakingly pieced together. A combination of original and replacement pieces may be required if some are missing or too damaged to use. Rogue pieces may thwart progress appearing to fit in one place while their true location lies empty elsewhere.

The pieces are vulnerable …

The goal is a correctly completed puzzle, a myriad pieces picked up and put together to reform a whole. 

*****

Life as I knew it blew apart as surely as though a bomb had detonated within it. I lost my family, friends, my career, my health, and any semblance of normality. I was 30 years old. Subsequently, I almost lost my life too.

In the years immediately afterwards I met a woman, I’ll call her Eartha, at a community art project for people experiencing mental illness. My diagnoses then were Depression, Generalised Anxiety Disorder and Agoraphobia. Latterly my symptoms and experiences have been neatly bundled under the term ‘Complex Trauma’ which, as I understand it, is variously described as Complex PTSD¬†(Post Traumatic Stress Disorder) or Complex Trauma Disorder.

I don’t remember much about Eartha’s particular circumstances but I do remember asking her how long it had taken her to get her life back on track. 10 years, she said.¬†I did a double take, stepped back in amazement, sank into a dramatic faint, and just about every other astonishment clich√© you might name.

I jest, but I was truly horrified. NO WAY was it ever going to take me so long. My career, dreams, passions, and goals -none of which were inconsiderable – were waiting, and they were becoming impatient.

I’m now approaching 50. Never in my wildest nightmares did I imagine that almost 20,

years later, I’d still be struggling to compete that puzzle and stride forward into life again, much less that I’d yet again be fighting for my life.

This, is ULTRA Jigsaw: The Epic Endurance Event! It’s set to test my mettle, as though the original trauma weren’t challenge enough.

 So, why has it taken me so long?
Am I just slow and lazy?!
I’m actually very proactive, determined and driven.

I think the answer to the question of what’s taking so long is threefold.

I’ve been rebuilding my life on quicksand. I don’t yet have any firm foundations but that’s not for the want of trying.¬†For a number of reasons, I’ve ¬†lacked reliable consistent support. Mostly I’ve had to go it alone. The scale and complexity of the task itself is problematic.¬†

I was abused for decades.I lived in a situation of recurring trauma for more than 30 years, and then spent more than a decade in a damaging marriage on top of that.

I’ve been ‘free’ for just three years.¬†

I imagine that someone reading this might wonder why on earth I didn’t get out sooner. There is no quick answer but if I’m able to tell more of my story it will become clear.¬†

To be continued …