An update, possibly rambling!

I’m a woman on a mission on today, to crack several sticky issues, but I wanted to bash out an update here while my cup of tea is brewing 🙂 .

Social care
There’s been no word from social work since the social worker who assessed me for social care in May, left to begin maternity leave at the end of July, despite my being told that I’d be allocated a new social worker. I’ve tried to contact the service manager, my ex-social worker gave me her details as she left, but I can’t get any response for her. A form did arrive in the post two days ago, from a different department, together with a letter asking me to supply the financial details requested in order that they can determine how much to charge me. This without my having been told that I would be charged. My next task today will be to complete the form. For the moment I’m putting the question of what happens if the decided charge is more than ‘buttons’, putting social care out of my reach, because that’s too scary to contemplate right now.

I still haven’t been told who will prove the care I’ve apparently been assessed as being eligible to receive (according to ex social worker), the terms of it or when I can expect it to start. Six weeks ago, my second choice of provider had apparently said that they thought they could support me but couldn’t confirm just at that moment. It’s proved impossible to find out anything more since. Sheesh, just writing about this is making me feel weary, so it must be a bagful of fun to read too. Apologies folks 🙂 .

Advocacy
I’ve emailed the local advocacy service this morning. My advocacy worker is now only available on Thursday and Fridays and so have asked for a meeting on either day this week, in order that we can discuss the following:
– Social work/care – I’ll ask if she will phone the manager when we meet – when she phoned earlier in the year there was immediate action. I could phone but I think the added clout of someone other than me phoning could make a difference. Also, I’m already under too much stress and both my interim therapist and my inner self care monitor (!) are urging that I lighten my load if at all possible.
– Complaint re crisis team – This is covered in this post, skip to the paragraph beginning ‘In September 2016’, to read the most pertinent bit. I have just two months left to get the complaint in. I’ve had to put it on hold with so much else going on.
– GP – I’ve lost such confidence since the crisis team debacle – not helped by my struggling to click with a new GP since my one left the practice last year. Her replacement is largely ineffective and the senior partner I chose to see instead, generally patronising but also, worryingly, dismissive of my mental health and won’t discuss it. I don’t know whether that’s due to his own ‘issues’ or whether he’s been influenced by the crisis team’s inaccurate conclusions.

Health
I’ve just called to make an appointment to see a female GP at my practice, having realised that I’ve consulted three male GPs during my five and a bit years with the practice and never had a good experience with any of them! Conversely, I’ve seen four female GPs there – all but one at least several times and all of those were excellent, only the one was dreadful (older, rude and crabby) and I opted never to see her again 😀 !

My first choice is about to begin a month’s leave. I’m booked in for a double appointment with my second choice (only second because she works fewer hours) on Friday, 8th September, and have already asked if my advocacy worker can accompany me. I’ve been advised it’s worth having that support until I am settled with a new GP and until my complaint about the crisis team has been resolved.

Primarily, I need to speak to her about the new and different depressions that I’ve been experiencing, which I strongly suspect are related to the perimenopause. Despite having experienced episodes of depression for nearly 30 years, these are the worst I’ve experienced, because they are so … complete … that’s the only word I can think of to even begin describe it. It’s just MORE … than previous depressive episodes, possibly because my usual depression is ‘reactive’ – a response to a particular trauma or stressor – this stuff ‘just is’, as clinical depression often is, but with the added ‘quality’ of exacerbating my Complex Trauma symptoms. I lose all capacity for days on end and it’s as though I … Tigger, grab life by the horns, heart set on living – have left the building. I’m left entirely unable to connect to anything or anyone and actively suicidal … like never before (and I’m without support for that). It’s difficult to write about. It’s difficult to appreciate if you haven’t been there. Suffice to say it’s horrendous and I’m generally worried for my safety and very much hoping that the GP will be sympathetic and will work with me to find a way to manage this, and to get to the bottom of the myriad of other new symptoms that I’m experiencing lately, making it impossible to sustain even a semblance of life.

Time is of the essence
I’m trying to be as productive as I possibly can in the next two weeks, squeezing even more than usual out of every ‘spoon’, to get as much sorted as possible, because, if the establishing pattern continues, I’m likely to lose the next two weeks of my ‘cycle’, and spend it clinging onto life by my fingertips. Lordy, I do hope not, but I’m trying to prepare to try to mitigate the impact. The last episode alone cost me £124 in appointment cancellations fees (dentist and physio) eating up the last of my little kitty from the Journalist’s Charity, and I haven’t even got my new specs because I had to cancel that appointment too. Oh my, I HAVE to laugh :-D, while I can, it keeps me going.

TTFN. Thanks for reading.

Heart x

 

 

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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!

 

Daily Log: 6th April, 2017

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

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

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

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

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

Driven to distraction before languishing in limbo

Distraction was the order of the day yesterday. I’d slept well on Thursday night and woken feeling relatively refreshed, but I soon began to feel decidedly uneasy.

I knew that I was troubled both by having posted this the previous day and by having emailed an acquaintance to ask if she might possibly visit me and help out with a few chores. I felt increasing guilt and shame, and a rising sense of that damn fiend, terror.  

I took my digestive meds, ate some generic ‘Weetabix’ and caught up with some undemanding telly. While watching the new series of MasterChef, to keep track of who’s who, I gave contestants names such as Ms Bullock (when she smiled she reminded me of actor Sandra), Mr Citrus Chicken (his dodgy dish), Ms Berry (a dab hand at baking), Mr Rochdale and Mr Experimental. 

With terror still making its presence felt and preventing me from doing anything useful, I let myself fall asleep and napped for a couple of hours. I woke after a series of dreams, in the last of which I was having a heart attack.

Despite the anxious dreams, terror seemed to have slunk away while I slept. I ventured into the kitchen and made some Porridge Berry Bakes. They’re quick and easy to make and are a healthy way to satisfy a sweet craving. (Thanks are due to the person who shared her recipe on a Facebook group dedicated to eating well on a budget.)  

Beat two ripe bananas (mashed) with two eggs and some vanilla extract. Separately, mix two and a half cups of porridge oats with some cinnamon and one and half teaspoons of baking powder. Now mix everything together then add one and a half cups of milk (I use skimmed cow’s milk, soya, almond etc also work). Divide the mixture into greased muffin tins (or silicone if you prefer) and add your berry toppings of choice (I used blueberries, as my photos illustrate). Bake at 180 for 25-30 minutes. N.B. Choose a non-diary milk and replace the eggs with another banana for a slightly more dense but vegan-friendly cake. These are good for children’s lunch boxes, or so I’m told.

Porridge Berry Bakes ready for the oven
Porridge Berry Bakes ready to eat

More MasterChef came later and the appearance of Ms Pastry, Ms Cabin Crew, Ms Muddle, Ms Sour and Mr Bland among others. I also spent time reading the memoir of a woman who took her fight for ‘the right to die’ to the High Court

I was determined that today I would work on part two of that significant post (if you’ve been keeping up then you won’t need the hyperlinks 😋) . I also needed to think about how on earth I might proceed from here. I’m a dyed-in-the-wool planner. I’m never without goals and plans of action, at least I wasn’t until now. After much brain-wracking and head-scratching, I felt as though I was languishing in limbo.I had no bloody clue what to do. Terror still lurked and threatened to pounce, somehow I kept it at bay. Somehow, slowly, very slowly at first, I started to write. I made two lists: What Does My Life Look Like Right Now? and How Should It Look? Alternative titles might be Existing vs Thriving or Deep Crisis vs Getting Better. I titled a third list, yet to be written, How Do I Get From One To The Other?  

Successful Scribbles

After a catch up with an online buddy and a few cups of tea, I wrote part two of that significant post, ‘Bullets 2016’, roughly in the order that they hit! From there this post began to take shape. While I was writing, an email arrived from the acquaintance I was worried about having asked for help, happily agreeing to do so. When you’ve nowhere to turn and you’re left having to ask for help from people you shouldn’t really be asking, the guilt is enormous … at least it is in my case. 

I don’t know the way out of all this, a few days before I found the strength to start blogging again I’d have felt the way out would be ‘in a box’. Now I only know that I think that writing is key.  

I’ve just re-read my post Silence Is Not Golden, for the first time since I published it. I’m surprised to find that it’s not quite so together as I felt it to be as I wrote it.Although it’s accurate and my story, it’s almost as though someone else wrote it, and that feels a little disconcerting. By contrast, as I’ve written this post, I haven’t felt as though the words were almost writing themselves nor as though writing was akin to pulling teeth. I just feel like me, writing  What that all means, goodness only knows. 

Silence Is Not Golden

I’m waiting for Bob, the smiley man from the pharmacy, to deliver my weekly package of Fibromyalgia medication. Only he’s not so smiley anymore; instead he looks both disconcerted and slightly disgusted, faced each week as he is now with my shambolic self; undressed, unwashed and sometimes smelly. 

I automatically summon a smile and good manners, but with my increasingly poor dental hygiene and dead-eyed dissociation neither can offer much reassurance. 

I’m unsure as to whether it’s a fear of intruding or an absence of community spirit that prevent him, in recognition. of my dramatic deterioration, asking if I am OK or if I need anything.

Weeks ago I couldn’t have dreamed of answering the door, allowing someone to see me in such a state, with Bob it’s become the norm. 

His deliveries have always taken only a moment or two, perhaps because in this largely ‘permit-only’ zone, he is parked on double yellow lines below, or perhaps his speed merely reflects efficiency. I’d guess his age to be beyond that of average retirement. He has a handsome, healthy appearance and sprints up the stairs to my second floor flat with the ease of a teenager. In the wake of my escalating disarray, he’s shaved seconds off his time. 

I did write for several hours on Sunday and into Monday, working on that significant post, mentioned here. I am trying to tell the story of the past year. It looks as though it’s to be set out in two parts, with the first giving background, context; setting the scene. The second a planned to be a bullet pointed list giving details of each trauma as they came, in rapid fire succession. 

I’d have said perhaps that each bullet left clear entry and exit wounds. They passed through and I carried on, like cinematic villains or monsters that just won’t lie down and die, but continue to advance while riddled with bullet holes. 

Now, I wonder about the impact of those bullets. I see now that they must have torn me apart inside  I knew I had been hit, repeatedly. I didn’t ignore it and I did ask for help … repeatedly … but none came. 

I think I was shattered. I realise I was silenced as surely as though a bullet had sliced through my vocal chords.

Bob has just made his delivery, the door is locked once more. My focus is now solely on completing this piece of writing, catching the words as they flow. 

I know that it feels good to write like this – as I couldn’t for so very long. Writing for me is like receiving a life-giving blood transfusion. I’m not sure I can assess the quality of this writing but it feels very good! Instantly I fear that must mean that it is in fact far from that. Yet it’s as though I’ve tapped into a natural spring that flows with exuberant ease. Clear. Fresh. True. It flows, seemingly without effort, almost certainly without strain. 

It’s as though it has to be written, would write itself if it could, and that I’m merely a conduit. Except I am connected to these words, they are telling my story.

On Sunday the pace of progress was rather more sluggish. The flow murky and stilted, like a tap turned on for the first time after the supply has been turned off, to allow the water company to attend to a burst pipe.The cloudy flow splutters, disgorges a flurry of debris into the sink. The tap-turner’s nose wrinkles in distaste.

I found the writing process increasingly stressful. I couldn’t tap into the feelings associated with the traumatic events of the past year without experiencing increasingly acute distress. I determined to press on feeling that this work was vital, the key to progress. I felt that if I could find the words here then, perhaps, I could find the words out there

With ‘part one’ nigh on complete, I reviewed and edited it until I could take no more. I wanted to publish and see the achievement of at least 50% of the task completed, but something held me back. The words felt forced, although they were not inaccurate, they did not feel true. Perhaps that makes no sense? 

The fog was closing in again. The clearing where I’d stood while I blogged for those few days last week, swallowed up. I was left with only terror and desolation for companions. I imagine their laughter deadened by the cloudy cloak but still perceptible. They roared at my gullibility, my willingness to hope that there might have been a way out. 

I soon as I try to write or speak about the trauma of the past year, the flow becomes stilted and murky, and then it stops. 

I was schooled in silence. As tools of the trade go, it’s pretty essential to an abuser. Without it they must rely on apathy or disbelief on the part of anyone hearing, or else they themselves must rely on the tool of discredit to save their skin. When the reality of my family life was finally disclosed, well into adulthood,  to a locum GP, the only one to act on suspicions, and with the gentle telling that followed that this was abuse and I didn’t have to live like that anymore, I knew. I knew that I had to learn to open up, that to begin to heal I had to tell. I did so. 

So, last year, I kept going, bullet holes and all, until a small event on the 13th of February this year (I’m not superstitious, the date is purely coincidental) became a monumental trigger. 

Having concluded that I should hold off publishing ‘part one’, on Monday this week, an hour before I was due to receive a visit from my advocate I sent a desperate, terror-fuelled email cancelling my appointment. I was and remain petrified of the consequences of speaking out. I’ve lost count of how any times I’ve cancelled in recent weeks. 

All I can say now is that among the traumas of last year was an incident in which I disclosed significant trauma and detail of significant risk to myself to two trusted professionals. I was not believed, and lies were told about me. I was not treated with respect but rather with contempt. I was mocked. I was refused support. I was left sobbing like I’ve never sobbed before, traumatised and feeling dirty in a way that I hadn’t felt since the abuse that occurred within my family.

The whole event had an element of the surreal about it. It was such an appalling abuse of power, a disregard for professional standards and duty of care.so shocking, that it was difficult to take in that it really was happening. To make matters worse the incident happened in my own home, the only safe one I’ve known. 

I don’t know how I’ve managed to write parts of this post. I can feel both shame and terror lurking, waiting to pounce the moment I hit publish. 

I’m clean! 

Having changed out of fetid pyjamas, showered and brushed my teeth, I’m back in the realm of daylight and a whiff of fresh air

While I’m happy to be more functioning, the more that I do, be it washing myself, eating, doing chores or whatever, the more  that I’m forced to confront how bad things are for me right now. Uh oh, there goes that guilt again that I spoke of in my last post .. I’m moaning/whining/being pathetic. I should think myself lucky, shut up and get on with it or, at the very least, seek to justify my every thought and action. Ho hum, I’ll try to ignore that.

Yesterday’s second dishwasher load has been unloaded, load number three is on the go and those few items that require handwashing are bathing in hot soapy water. I’ve stripped my bed, organised some paperwork for shredding, rinsed some items for recycling, and dealt with a pile of post.I’ve rested periodically, vital ‘spoonie‘ pacing, to try to avoid crashing and burning. Although, I’m sensing that the more I gather momentum the more I feel an urge to keep going and so resist the need to rest.

I’m now munching on some of last night’s banana loaf. Next I’ll wipe the kitchen work surfaces, do a quick swish and swipe in the bathroom and remake my bed, …then I’ll flop for a bit with BBC Radio iPlayer.

Thursday into Friday 

Good morning 🙂 

I’m feeling positively breezy this morning but I think I may finally have learned not to get swept along by my need to be positive, and to understand that my current ‘breezy’ is a long way from the ‘breezy norm’. 

Any improvement, however slight, on being locked into the fog of dissociation with only terror and desolation for company is wondrous. That ‘wondrousness’ is  a bit of blighter actually because it can leave me feeling guilty, that things are not so bad after all and that I certainly ought not to be requiring, or even less, seeking any help. 

I grew up believing that I wasn’t suffering at all, despite experiencing appalling trauma and abuse. I notice that as I wrote those words I felt a twinge of guilt that made me cringe. Was it really so appalling? Am I exaggerating? I say that as someone who aged nine witnessed one parent actually trying to murder the other and, while still a child, lost a parent to suicide on my birthday. Those are but two of many more examples that I could give. 

I grew up with that belief partly because these events were given no more significance than a broken fingernail in terms of their impact on me, by those around me. It was also drummed into me that I had it so good and that there were so many people in the world worse off than me. Consequently, I can struggle with the distorted perception that if someone, anyone, is worse off than me then I am not struggling/suffering/in need and should just ‘get on with it’. 

Yesterday, I made and ate a plain omelette,  ran two dishwasher loads – making a sizeable dent in the accumulated kitchen ‘crisis detritus’ – ate some kidney beans with tomato, black pepper and cumin, and, when late yesterday evening hunger was still a problem but food was scarce, a bashed together a banana loaf which, despite being missing a couple of ingredients, turned out to be my tastiest yet. 

I also took the huge step of introducing my oldest friend to this blog, *waves hello to her*, and thoroughly enjoyed watching the final of the Great Pottery Throwdown. Although, I’ll be experiencing withdrawal symptoms now it and the Great Big Painting Challenge have both concluded this week! 

Today I will be focused on cleaning myself up (a far greater task than it may sound) and receiving a supermarket delivery of some groceries this evening. I hope to work on a significant blog post. It may prove challenging to compose but I believe the benefits of doing so will outweigh the challenges.