Enforced rest vs chill out time

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it. 

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound like an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun. 

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and blurred vision –  all part and parcel of my ‘spoonie-ness’ – and having to lie still to keep some horrible symptoms under some control. 

Screen/online time offers good distraction and company but can also exacerbate symptoms so I have to try to find some sort of balance. Lying down in a darkened room with no distractions or contact would help my body but would drive my mind insane. My mental health thrives on action and productivity. I have to somehow come up with a kind of happy medium. 

I’ve still got to do some things like eat and wotnot but that’s anxiety provoking because I don’t know how much attempting to do those things will exacerbate my symptoms. Sometimes I’ll be afraid to try, sometimes I’ll plough on regardless – sometimes I’ll get away with that, sometimes I’ll pay a heavy price. 

That all sounds so negative which makes it very difficult for me to say, but if I try to hide from or ‘sugar-coat’ the realities of chronic illness then how are people going to gain a better understanding? 

I am still … mostly … smiling :). My mood hasn’t plummeted as can happen when the body is struggling so much. I have hope that a better day is around the corner. To be honest, although I know it’s a possibility, I don’t think about the prospect that one is not as that would sure as heck make it more difficult to cope. 

Back into standby mode for me then and managing to do what I can in this ‘spoon drought’. 

Thanks for reading. Comments welcome as ever. 

Heart x 

Putting myself into Standby mode

Throughout the last week I’ve wanted to write, write and write. I’ve had to work hard to resist the urge to do too much either of writing or anything else. 

It’s been a momentous week with a sea change that’s swept me along, low ‘spoons’ and all. I’ve felt productive and counted many accomplishments. 

Today, I’ve recognised that both my body and mind need rest. I was awake at 7am and showered soon afterwards to await the arrival of the postie and a parcel courier..I began to feel ‘off’ and now feel poorly unless lying still, so that’s what I’ve mostly been doing this afternoon. I’ve napped, watched a lovely film about Billy Connolly, played some word games and read a newspaper online. I’ll continue to rest this evening. I would really like to be ‘up and at ’em’, so this is frustrating but I’m hoping that a quiet, very restful weekend will see me able to me more active come Monday. I still want to write but the fact that doing so right now feels like wading through treacle is a sure sign that intensive rest is required.

Thanks for reading. 

Over and out, for now.

x 

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

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

Well … what a difference a day makes!

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

You might think me weak.

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

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

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

Yep, she did.

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

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

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

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

***

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

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

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

“Let’s have a cuppa”, she said.

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

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

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

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

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

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

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

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

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

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

Heart x

 

 

 

 

 

 

 

 

 

 

Heart set on dying?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for reading.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Self-styled ‘abuse survivor’ … and proud?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I feel like I just ran a marathon

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

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

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

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

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

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

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

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

Overseas Visitors

According to my stats, I’ve had a visitor from Switzerland today. I think that’s a first for heartsetonliving.

As a passionate communicator reaching people thrills me, but there’s a sense of the wistful, the romantic somehow, today about reaching someone in a place I’ve never had the opportunity to visit and which until now hadn’t visited me here. 

It’s good to blog.   

Sunshine, Sleeplessness and Soporific Solutions

I hope you’re appreciating my post titles of late, they’re jolly good, don’t you think?! 😁. 

On Friday evening I didn’t remember that my productive day would lead to a pain-filled night, courtesy of my #spoonie conditions, and so I failed to take the double dose of medication that should have ensured that I slept regardless. Consequently, I spent the entire night awake, not even the beautiful tones of Neil Nunes reading the Shipping Forecast could placate the pain. I distracted the night away by reading and making occasional writing and journaling notes.

I took my daily digestive disorder medication around 8am yesterday. Breakfast was a treat of two cranberry and sultana hot cross buns and a large mug of tea. My ‘spoonieness’, exacerbated by lack of sleep, had me feeling very nauseous, weak, unsteady on my feet and fatigued. I climbed back into bed and with pain finally easing quickly fell asleep. 

I slept for around five and a half hours until 4pm. I really dislike sleeping, even napping, during the day. It doesn’t fit with my orderly seize the day attitude. Going ‘against the grain’ is a requirement of living with chronic illness.

On waking I worried that I wouldn’t be able to sleep that night but then determined that I would. 

I did some low-level activity, made and enjoyed a tasty dinner of two vegetarian sausages, root mash (pre-prepared) and peas, while silently rejoicing that this week I’d had the means to organise, fund and receive a supermarket grocery delivery. I emptied the dishwasher and washed some glass jars that I’d soaked for a time. 

Later I did some writing, messaged a friend via social media then watched some telly on my tablet.I’d taken a double dose of my Fibromyalgia medication and soon felt sleepy. Pain grumbled then roared in my legs. I teetered on the edge of sleep, too drowsy to be of use to man or beast, automatically manoeuvring said legs in the manner of physiotherapy exercises hoping to gently soothe my sacroiliac joint and attendant pains. Thinking about that I realise that in my prone and feeble state I’d make a easy meal for a beast, so some use then … 

At some point, soon after midnight I think, I dropped off. I woke briefly at 9am this morning, conscious but too groggy to be coherent, I quickly succumbed to sleep again. Next I woke at 1pm … really 2, since of course the clocks leapt forward overnight. Praise be for my automatically updating mobile phone and tablet computer. With a fancy for the horological, I’ve more than a few clocks to alter. 

I caught my heart just before it sank at the realisation of another day half slept away. No matter, we’ve got this, I told it, or at least I encouraged myself with a general sense of that.

Blogging and a bath are the priorities of the remains of the day; insistent period pain and associated digestive consequences an unexpected companion. 

That significant post that I mentioned the other day really needs to be written today as it’s a vital part of the process of trying to finally secure support, that process shifts up a gear tomorrow with a visit from my advocate. 

It’s been a weekend of sunshine where I live: all clear blue skies and brightness. I’ve witnessed it fleetingly through my kitchen window. I ache to be out there, on a sunlit and ‘spring-embracing’ walk, but I shroud that desire and, to cope, focus instead on my alternative sunshine. I have food, I have some contact with friends, I’ve slept, I’ve been reading, I’m cleaner, I’M WRITING AGAIN, a vital meeting is set to take place tomorrow, I think there may be hope; there may not be enough hope. I’ll concentrate on the first part, leaving the latter part of that sentence – oh God, how it feels like a sentence to be served –  to languish in the fog. 

Dear Reader, I wish  you some sunshine of your own. 

x 

Champions

This is just to say huge heartfelt thanks to those who leapt to comment on my previous post within mere minutes, seconds even.

I’ll try to reply individually but please pleaae please know that each one of those comments is the equivalent of a life raft or a chink of light in an impossibly long and dark tunnel.   

If you’ve never been alone in the world, without anyone in your corner, wirhout anyone to whom you can say “I need help, please come now”, if you’ve never been desperately vulnerable and at risk, then your value here on this blog might be difficult to appreciate. I’m telling you that it’s priceless. x