Money, Money, Money

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Boarding the Social Care Merry-go-round

Hello again 🙂 !

Please note that I wrote this post several weeks ago following a social care assessment by a social worker that had taken more than a year to come about following an urgent referral. Lots has happened, and changed, since then as more recent posts evidence, but I wanted to post this to update this part of the story and so that I can next post a more brief update on the social care front.

This is an intense post … very raw

*** TRIGGER WARNING – this post contains mention of suicidal ideation and brief description of planned method – but with an optimistic outcome, I promise. It also contains a sweary moment.***

I’m afraid to get too excited. I’m scared to hope until it’s all been verified and approved. And yet somewhere inside me it’s bubbling away, small but unbridled, fizzy excitement.

It’s keeping me on top of a precipice, by keeping hope alive.

Since my collapse in mid February, it’s been quite the job to stay alive … too many times I’ve almost tumbled over the edge.

****

Having experienced significant trauma and having been abused for many years, I’ve experienced suicidal feelings on and off since my late teens – that’s almost three decades – due in part to mental illness caused by the trauma and abuse. They call that being ‘passively suicidal’, which sounds rather like there’s some relaxed, chilled vibes going on. In actual fact, feeling suicidal, regardless of whether you’ve reached the ‘actively suicidal’ stage of making and seeking to execute suicide plans, can be HORRIFIC.

Sometimes suicidal despair is less about mental illness and more a human, albeit extreme, reaction to devastating circumstances. It’s often a desire to end the most terrible pain, and to end life appears the only way to do that.

I’ve been actively suicidal around four times in all those years. I’ve made only one actual attempt to end my life (a survived attempt is known as a parasuicide) and that was a little over a decade ago. At that time I was very mentally unwell and poorly supported as I tried to come to terms with the recent realisation that the family members to whom I was devoted, hadn’t loved me at all and had sought only to harm me. Furthermore, that estrangement from them – what remained of my family – was the only way forward.

Since then I’ve become far less mentally unwell on account of a lot of psychotherapy and a lot of hard work. I’m lucky that’s worked for me, it’s not the same for everyone. Mental illness can be as individual and as complex as those who experience it. I’ve also become extremely well practised at keeping myself safe even in extreme circumstances. I know that if I can’t keep myself safe, that that’s an emergency situation. The difficulty comes when the system does not have the resources to provide appropriate support.

In July last year I set up a noose in my flat, carefully balanced I tested it to ensure that it was fit for purpose. As, during this test, I settled it around my neck, the phone rang suddenly – loud and shrill. I started and almost fell off the object on which I stood, and which ultimately I was planning to kick away … It’s not funny, it’s really not, but still I find myself laughing now. You could not make it up.

I could just have gone with it but instead I fought to right myself and hurried to the phone. My phone rarely rings. I answered to hear the voice of someone who has rarely called and never without being asked to do so. I do not believe in divine intervention but the interruption gave me sufficient pause. The ‘spark’, as I think of it, inside me that’s kept me alive through everything yelled … Do not fucking extinguish me. I am not done yet. It’s pretty difficult to ignore ol’ ‘Sparky’.

That said, in spite of the urge to fight on, I knew that I was under a great deal of pressure in very difficult circumstances. I knew that I was losing the capacity to keep fighting by myself. I knew to ask for help and I did, but it didn’t come. I had my first ever direct experience then of a mental health assessment – carried out in the large and somewhat forbidding psychiatric hospital in the city where I live. I was found to be ‘too well’ for inpatient care (much to my relief, I admit) but also for the support of the community based Intensive Home Treatment Team or ‘crisis team’. I was told that there was nothing else. The assessing doctor did suggest that I try volunteering as a means to ‘occupy myself’. The irony that I’d spent the previous four years volunteering, first for two years in that very hospital, setting up and running a not inconsiderable project by myself supporting ex and current patients, and a further two years working with a mental health charity, was not lost on me. I didn’t need to be occupied, I was more than capable of doing that for myself, sometimes to excess in a bid to keep myself going. I needed some practical and emotional support, for I had none.

***

In recent years, a complex set of circumstances including marriage breakdown and later divorce, two major bereavements, unexpected severe financial difficulty leaving me unable to afford to heat my home and dependent on food bank for three months and in fear of losing the roof over my head, had threatened my mental health again.

Added to that, was the fact that I was driving myself into the ground by working my socks off to get myself through all of this and onto a better future. I drove myself to breaking point. Support did materialise for six months, in the shape of my GP, a housing support officer and a friend. I made huge strides and began to thrive. Then my GP relocated, in the same month my housing support worker was withdraw overnight … the service is limited due to budget constraints.

By this time, a little over a year ago, I’d begun experiencing flashbacks to abuse of which I’d previously had no memory. I experienced intense anxiety that I hadn’t felt in years, and I also began to realise that dissociation had likely long been some part of my experience. The friend who been supportive, began to back off at this point, seemingly unwillingly to believe in flashbacks and dissociation, because they were outwith her own experience.

It seems as though having finally got out of my marriage, which wasn’t healthy, having some support in place and space to be myself, something unlocked in my mind. I already knew there were some things that I still needed to process in therapy, but I came to realise that there was more than I knew. In addition to the flashbacks and anxiety, it was as though I could suddenly feel the impact of all of the loss that I have experienced, and the attendant grief. That’s everything from the loss of my whole family, through losing my career, close friends and my marriage – all as a result of abuse/trauma, through the loss of the opportunity to have children, and right down to the permanent loss of a significant amount of my hair due to alopecia.

The pain was off the scale and unable to obtain any support despite, even if I do say so myself, valiant efforts, my mental and physical health deteriorated rapidly, until one day in February this year I could do no more and was left with the barest of function.

***

When I moved into my second floor flat a little over two years ago, I could run from the street below up the numerous stairs to my front door, in a one-er. I was EC-STAT-TIC the first time I managed it. I might as well have run the London Marathon … in record time … such was the size of this achievement.

I’ve never been what you’d call ‘sporty’ and, although I love to walk, I couldn’t ever imagine having any desire to run. It took among other things a broken back; the loss of my family, close friends, my career and my hair; a suicide attempt that left me in cardiac arrest, and finally a broken marriage to send me in search of my very own running machine.

My health is a bit wonky these days. I say these days. The wonkiness set in before I was 30 and I’m now approaching 50.

Aside from the umbrella of ‘Complex Trauma’ – which for me includes Post Traumatic Stress Disorder, Depression, an eating disorder and compulsive skin picking known as Dermatillomania; I have several physical conditions for which there is currently no cure. The former is a direct result of my experiences of abuse and trauma.

Lots of bits hurt; bits squirt, leak and splutter. Bits fall out and bits malfunction in such a way as to leave me feeling as though I’ve gone 10 rounds in a centrifuge. Among other things, I can be incontinent, my mobility can be impaired, I experience memory loss, pain disrupts normal function and, when this lot really means business, I cease to function.

I’m great at faking wellness and pretty bad at showing sickness. It kills me to tell you – unless you’re in the same ‘club’ – how bad I’m really feeling. I’ll really try but I’ll skirt, feint and increasingly hesitate. It’ll be like pulling teeth and you’ll probably end up none the wiser.

Right now, I haven’t been able to leave my flat for almost four months and an attempt to run up those stairs would foolhardy to say the least. The treadmill is gathering dust but I still yearn to run.

I’m always going to be limited in some ways by health issues, but careful self management – to be fair, a rigorous regime of physiotherapy, graded exercise, medication, diet, meditation and more – has in the past meant I could make more of my ‘spoons‘. That’s what got me in a position to be able to run a mile several days per week. I don’t mind putting the work in, far from it, but support is necessary to sustain it.

The responsibility of care/support falls first to families, no matter their age, then friends … neighbours … the world and his dog. Social care is not readily provided by the state. Hoops must be conjured, immolated and resurrected before then being jumped through so accurately as to achieve a perfect score.

At the time of writing – popping between this and Twitter as all good writers do (!) – two tweets appeared on my timeline both, although carrying dispiriting messages, suitably illustrate this post. Cue a further frisson of excitement, stirring music, and … and … the … the …THE STARS ARE ALIGNING!

I have to shake myself back to reality. After suicidal depths and isolation, so perpetual as to rival purgatory without the promise of heaven, real hope can send one a tad giddy …

This tweet pictured below is from a psychiatrist working in an NHS Accident and Emergency Department. Whether a real or an ironic example, the message is the same. Resources are very limited, ever more strict criteria is applied to determine who may receive them. People in need can and do slip through the widening cracks in the system. The second tweet contained a link to this article in the Guardian.
Tweet 24 May 2017 to use to illustrate a HSOL blog post

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

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

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

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

 

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

 

A footnote on mindfulness … or ‘being in the moment’

How many of us don’t at some point feel worried about the future or dwell on some element of our past?

And yet the past, while it may influence our present, is utterly unalterable. Our actions in the present may yield future favour, but we cannot predict the future.

All any of us has is the present … to be lived, as far as possible, moment by moment.

I’m finding that difficult right now, because I don’t know how I’m going to pay the rent this month, but let’s face it … worry isn’t going to pay it! I could get hit by the proverbial bus tomorrow. It could be curtains. I may never need to make that rent payment.

I don’t have a death wish right now so let’s work on the premise that I will see the end of the month. I can’t magically erase my money problems but I can boost my ability to deal with them. 

Mindfulness can help. Some find it easy to ‘live in the moment’, others find it more difficult to achieve. It takes practice. Even, as I discovered when I first tried it, just 10 minutes a day can make a difference … lowering stress levels … calming a busy mind … providing much needed breathing space. 

Mindfulness is not a panacea for trauma nor even a cure-all for everyday ills, but, for me at least, the benefits on offer are worth the effort I must put in to my practice. It’s worth noting that it is an effort but not a strain, and that there is a difference. 

And with that, I think I’ve just got myself a mantra of the moment, something to help me to curb the hyper-drive tendency and make peace of mind rather more tangible than nebulous. 

Effort Not Strain 

 

GENDER GRATUITOUSLY GRANTED!

Gender matters, but it’s not the be all and end all. Much like unbridled alliterative headlining … obsession with gender difference and superfluous gender labelling are rife.

We’re discovering that gender, like sexuality, can be more fluid than first assumed. Whilst natural conception requires the combined attributes of a biologically, or traditionally, gendered man and woman (functioning penis, vagina and reproductive systems); this does not preclude innovative gender identification.

My home is a mix of old and new – traditional and contemporary with added personal ‘creative innovation’. It’s personally appropriate; it’s ME.

We evolve, we grow, we move on. Out with the old, in with the new, is sometimes the best policy, but traditional, progressive, even unique, can co-exist.

Gender difference and gender identity have, arguably, never been such ‘hot potatoes.’ Personally, I find the idea of someone being transgender an easy concept to accept. I’m not a scientist, I have an entirely arts-biased brain, but it strikes me as both logical and natural. We as humans have common foundations but myriad variation, also exists. Like grey eye colour, left-handedness, homosexuality, or a third nipple. It’s neither right or wrong, it just is. Be yourself by all means, but to dismiss or prohibit others difference is to discriminate. Being gay, of non-binary gender, or a six foot, left-handed woman with ‘ginger’ hair and size 10 feet, does no harm. The same cannot be said for discrimination, intolerance … or narrow minds.

There are religion-based arguments against such thinking. While I respect the right of others to diverse beliefs, in my view as an atheist those arguments have no basis in fact. Fact matters, particularly the fact of whether harm occurs. Your beliefs are your choice. Believe that the world is governed by green invertebrates from the planet ‘Zog’ if you so choose. If ‘Zogans’ should decry all but white male supremacy; seek to ban abortion in all circumstances; see same sex relationships as abhorrent, and insist women should always wear pink dresses and high heels; it’s your right to do so too. Unless you can prove beyond reasonable doubt that anything else causes harm, you have no right to impose your views on others. To do so would be harmful and contravene their right to think and act differently.

I don’t have the right to  tell a biologically born woman that she may not self identify as a man, or feel and be neither exclusively male, nor exclusively female. I don’t feel remotely threatened by the notion or the difference. Curious, yes. I am that about very many things. I’m fascinated by life and people in all their complexity, diversity and mundane minutiae. I love learning and encountering ideas beyond my experience.

I feel like a woman (cue: music!) How much of that is biological, how much is cultural, may be difficult to determine. Some women love pink, but a fondness for it isn’t a requirement of femininity. A woman could be a mother, shave her armpits, wear frilly dresses and favour the floral. She could also play golf, wear boxer shorts and ties, ride a powerful motorbike, detest the frilly, and go out to work while her partner looks after their children. A woman could be all of this, some of this, and none of this … as could a man or someone of non-binary gender. Assuming of course that society respects an individual’s right to self-determination.

Presently, my choice of bathing product is largely determined by price, by virtue of a tight budget. Shopping online last week I favoured a blackberry and ginger scented bath soak. Its labelling promising that I’d ‘feel recharged’ was neither here nor there. When it was delivered I saw that the product is assertively labelled ‘ MEN’. Unlike my previous choice of the ‘stress relief’ variant from the same brand – which is not gender labelled. Similarly, ‘feel blissful’, ‘feel relaxed’, ‘sleep easy’ and the particularly optimistic ‘feel heavenly’ are not gendered, but they are pastel coloured. All the other Radox bath soak products in the range are primary coloured and bear the ‘MEN’ tag. Presumably, men don’t seek to sleep easy, feel relaxed, relieve stress or reach celestial heights? As a confirmed woman, I’d quite like to ‘feel recharged’ or enjoy ‘muscle therapy’. It does feel a tad odd, as a women living alone, having a product in my bathroom that’s prominently labelled for men.

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Engendering consternation

I don’t have any male cheese in my fridge or female bread in my food cupboard. I’m not typing on a keyboard for women, nor do I plan my life with the help of a non-binary diary.

Come on Unilever UK and Ireland, I challenge you to GET WITH THE TIMES! Men can like pink and pampering. Women can favour primary colours, be assertive and dominant. They and every other gender variant can be all things in between.

PUKKA, procurer of expressive but none the less arbitrarily named teas, has also got my non-binary gendered goat. Tea is neither male not flipping female, to say otherwise is definitely not pukka! I like a cup, or a pot, of tea. Builders, fruit and herbal are all fair game; decaffeinated is my preference. PUKKA sell a blend, described as ‘a delicate dance of organic cranberry, rose and sweet vanilla’. It’s a particular favourite of a female friend of mine and we often chat over a pot or two. It was originally called Harmonise, an arbitrary but inoffensive moniker in my view, then it was re-branded …

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Pretty … sickly

I do and have done many things as a woman, dance delicately is not one of those things. Considering the prospect of a ‘delicate dance’ of cranberry, rose and vanilla flavouring a cup of tea denoting womankind, just boggles my brain. I’m inclined to stop buying it in protest, but respect my pal’s right to continue to enjoy it, and anyway she bought my last box and it would be rude not to use them. Although, she too is not enamoured of the name. It’s a wonder we can stomach a beverage described in such nauseating terms.

I hope you have enjoyed reading this, perhaps over a cuppa? I’m off to ‘feel recharged’.

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Time for tea?

Please note: This is not and can not be intended to be an in depth exploration of gender. Nor do I seek to trivialise gender identity issues. It is merely my opinion, delivered, I hope, with due respect and trademark humour. As ever, I welcome … nay, covet … comments, discussion … and tea. 

 

Today in tweets.

This evening I decided to set up a Storify.com account and use some of my tweets to tell you about a key event today.

Unfortunately WordPress no longer support Storify code so I’m unable to embed the story directly into this post, but please click here to read it.

TTFN x