A whole lotta grief

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

That’s how it feels when it hits you.

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

Why am I grieving?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Heart

x

 

 

 

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

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

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 – no doubt generating bundles of paperwork – if 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

 

Daily Log: 6th April, 2017

I slept well, extensively actually – fot around 12 hours – that’s been the way of things during this crisis. I either sleep a lot or I don’t sleep at all. 

I’ve changed my bedding today, showered, cleaned my teeth, dressed, aired the bedroom and dusted the bedroom furniture. I’ve folded some clean laundry, washed a few dishes and emptied the dishwasher. 

read for a while, and I’ve played a few games of Mahjong. I haven’t played any computer games for years, but when an ad for a free version popped up on my tablet, I remembered that I had once loved playing Mahjong on some device or other. Within days I’d whipped through the 40-odd levels, finding it an outlet for my natural drive. I’ll admit I was disappointed not to receive onscreen fireworks or some sort of fanfare to mark the achievement :D! I’m still hoping to beat previous times but mostly now play because I find it mindful and therefore calming.

I’ve just shot about a foot in the air at the sound of my buzzer, I have a ridiculously exaggerated startle response. I pressed the button to open the street door without speaking into the intercom assuming it to be the early arrival of supermarket delivery of groceries that I’m expecting between 9-10pm. Delivery charges range from £7-£1; this slot is the cheapest.I haven’t eaten today so I’m looking forward to it arriving and having some supper. I thought my wait was over but with no sign of the delivery person nearly 10 minutes later, it looks like wishful thinking. I’ve stopped hovering by the front door, peering at intervals through the spyhole for signs of my shopping being lugged up the two flights of stairs to my flat.  

The rest of the evening holds promise of further writing, making notes ahead of a planned meeting with my advocate tomorrow, and catching up with MasterChef before reading then sleep. 

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. 

Feeding Myself

Note: I  wrote most of this post on Sunday but became swamped by trauma symptoms and wasn’t able to finish it until today, Wednesday 5th. 

My belly is full of wholemeal toast, eggs scrambled with spring onions and cheddar, seasoned with a dash of sea salt and lashings of black pepper.
I’m not a food writer nor do I aspire to be one, but I am inspired by at least two of them. My favourites, Jack Monroe and Ella Risbridger started out as bloggers, before books and the world of traditional publishing beckoned.

Until I reached ‘middle-age’ I had no real cooking confidence. I blogged about that and how that changed, here.

I have a difficult relationship with food. I have an eating disorder. There, I’ve said it, that wasn’t all that difficult was it? Actually, you know what, it really was; it’s difficult for me to be open about it.
I’ve probably had a tendency to struggle with food for most of my life, but there have been two periods where that struggle became a full blown eating disorder.The reason it’s so difficult for me to discuss isn’t because I feel ashamed about it in myself. I recognise it as an illness and accept that the trauma and abuse that I’ve experienced lie at the root of it. However, I am aware of the stigma that it carries.

Many people, including some medical professionals, scoff (I know, I couldn’t resist the ironic pun) at the very idea that binge-eating disorder is described as an eating ‘disorder’ at all. I’m just fat and greedy, right? If you don’t agree with that last statement, you might be surprised by how many people would.

Beat, the UK’s leading charity providing support for, and campaigning about, eating disorders, has this to say: “Binge eating disorder (BED) is a serious mental illness where people experience a loss of control and overeat on a regular basis.”  You can read more on the Beat web site, here.

In recent years ‘fat-shaming’ has become ‘a thing’ and some have fought back against those who seek to mock, deride or in any way bully someone who is overweight. An element of ‘fat pride’ has emerged, with a rise in plus-size bloggers and models.

I’d like to be fat and proud. That’s not because I’m happy being so overweight, I’m not in the least, and that’s entirely because of the impact that it has on my health and fitness. I’d like to have that ‘fat-pride’ while I remain this size because I do not want to feel shamed or otherwise negatively regarded because of my size.

I’m never going to be without curves, that’s the way I’m built. I’m a pear-shaped woman with an ample bosom. I’ll gladly celebrate those curves, in the way that I’d encourage anyone to be body confident; body positive.

I want to beat my eating disorder and lose weight. I want to regain, and revel in, my fitness because of the positive impact that is has on my life. I did beat the disorder the first time around. I did it without help, not because I was trying to go it alone but because I wasn’t offered any. After regaining some control over my eating patterns, it was some years before I was able to lose the weight I’d gained as result of the disorder. I did it between 2011 and 2012, losing five stone.

I was inspired by the ‘Hairy Dieters’ television programmes, they focus on that old chestnut, a low calorie diet and increased exercise. The hairy ones aim to make low calorie options that taste good and satisfy. It takes effort to lose weight and every bit of incentive you can muster really helps.

After leaving my husband, I took up running in early 2014. In reality I took to walking on my treadmill and slowly built up to being able to run a mile a day, but ‘I took up ‘treadmilling” doesn’t have the same ring to it. (Click on ‘treadmill’ in the tag cloud on my blog homepage, if you’re interested in reading about my route to running.) I’ve NEVER been ‘sporty’ but I really grew to love running, or more likely the endorphins that the activity released, that and the vast improvement in my fitness and my body confidence.

I’m probably not quite back at my heaviest ever weight, I can’t be sure because my scales have broken and I can’t afford to replace them, but as a result of this relapse into an eating disorder, and so months spent in the grip of compulsive eating, I’ve gained at least six stones in weight over a period of around 18 months.

Last year I asked for help via my GP surgery and the Intensive Home Treatment Team (mental healrh out patient crisis service) many times, and with increasing desperation. I knew that this time I needed help to beat it. Despite my massive weight gain in a short space of time and a new diagnosis of very high cholesterol levels, I’ve been offered no help ar all.

My trauma therapist said we could do some work around my eating issues, but given we already have so many other high priorities stacked up, that’s not practical. The Intensive Home Treatment Team psychiatrist promised to speak to the local eating disorders service about the possibility of support for me there. She told me that she’d get back to me. I chased it up when she didn’t and was rudely told that I’d already been told “NO”. I wasn’t in a position to argue and didn’t receive any fuller explanation.

At least my GP’s urgent referral for trauma therapy had got me onto a two year waiting list … I love the NHS but have long found its mental health services to be chronically underfunded and often poorly staffed, and it’s trauma services (that’s the psychological version not A&E) rarer than hens’ teeth. Again and again I’ve turned to the voluntary (charity) sector, itself often cash-strapped with services oversubscribed. As a result, services often receive scant advertising.Many hours of research can be required to uncover what might be available, and then often complicated application processes follow. Recently I bagged a place on a waiting list for a ‘trauma support worker’ – essentially, someone to meet once or twice a month who can provide moral support, guidance and practical help as you work to rebuild your life. I’m due to reach the top of that list in early 2019.

But back to the impact of the eating disorder, I think that I’m now the most unfit that I’ve ever been, and that does not feel good AT ALL. In fact, it’s really rather frightening, the detrimental impact on my health is evident.

I am beginning to cultivate a more positive connection to food, and the beginnings of this new relationship were nurtured by those food bloggers, Jack and Ella.

Jack’s engaging blog began when poverty forced Jack to feed themself and their toddler son (Jack identifies as non-binary and so prefers the gender neutral pronoun ‘their’) for £10 a week. Jack’s no-nonsense style and inventive recipes are budget-conscious and also an excellent resource for.anyone seeking the confidence to cook from scratch.

Ella’s writing is more lyrical, hers is the poetry of food writing. Sometimes high-falutin’ ingredients could be off-putting if you’re a beginner or more especially if you’re low on funds. I’ve yet to try an Ella recipe, but still I savour her blog. I’m along for the ride, vicariously living her altogether nourishing relationship with food and cooking, and learning from it.

What both Jack and Ella have in common is that they have both introduced me to the idea that preparing nutritious food for myself can be a healing endeavour. The process of preparing and cooking food, chopping, stirring, whisking, can, and should be, a mindful, meditative experience, allowing for calm concentration and a break from a traumatised, troubled, or simply busy mind. You savour the process as much as the end result. There’s also achievement and satisfaction in both admiring and eating your creation, however small or simple! Cooking for oneself can be a nourishing experience, not just for the body, but also for the mind.

I particularly enjoy making Jack’s easy peasy Coconut Milk Soda Bread. Jack’s description of rocking a warm, snuggly bundle is my idea of a great twist on ‘comfort food’!

This weekend I’ve discovered the joy of baked eggs all kinds of ways.

Baked Eggs: Mushroom and vegetarian-style ‘Pepperoni’ and Spring Onion and Cheddar, perhaps not the prettiest dishes but certainly very tasty!

I also tried a Sainsbury’s recipe for a healthy snack – roasted chickpeas – simply a can of chickpeas drained, patted dry and mixed with a teaspoon of smoked paprika, a teaspoon of chilli powder and a quarter teaspoon of  both cumin and ground coriander, then roasted in the oven  I really fancied these savoury nuggets but was disappointed with the results. I’d been expecting the promised crunchy snack but in reality felt I could’ve been eating cardboard!

Chickpeas: drained, dried and spiced
then roasted to look great … and taste like cardboard

Put chickpeas to better use and make your own houmous, it’s a gazillion times more healthy than shop-bought versions and tastes great. The easy recipe in the Healthy Living Yearbook is another favourite of mine.

Homemade houmous

I may have Complex Trauma but I’m not a complex cook; I’m a ‘spoonie’! Unfortunately, cooking often falls off the bottom off my to do list when ‘spoons’-  a.k.a energy and the capacity to function – run out.Quick and easy recipes are my way to go.

I’ll discuss my efforts to again overcome an eating disorder together with my hopes for and also my reservations about seeking support via Overeaters Anonymous, in a later post.

.