I’m baaaaaack!!

No really, I keep saying that but I really am back this time ūüôā !

Time and ‘spoons’ have been in short supply as there is such a lot going on in my life just now – all connected to the ‘big plan’.

I’m behind with my reading and commenting on other’s blogs and also on replying to comments on mine too. Forgive me, I’ll catch up soon.

I’m going to write a series of posts over the next few days. My intention is that they will be bite-sized updates and musings.

In the words of Miranda’s ‘Tilly’¬†bear with,¬†more is a-coming …

 

 

 

 

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Quick check in: I’m still alive!

Just to say that I’m still alive and I’m OK, I’ve a lot on my plate but I’m doing well. I just haven’t had the¬†spoons to blog. I have tried and there are a couple of drafts in progress.

All being well, I will return over the weekend with lots of news.

Happy Friday folks.

Heart x

A look at the BIG plan …

With me, there’s ALWAYS a plan. I discovered Bullet Journalling last year … and was as happy as the proverbial pig in muck/mud/sh*t – however you choose to term it, having discovered a cool system to both simplify and maximise my planning activities!

I was in some pretty deep doo doo at the time and struggling to keep afloat, 2016 being my annus horribilis,¬†but at least I had a ‘customizable and forgiving organization system’ to help me… And one, according to the creators of the system, that will ‘teach you to do more with less,’ surely that’s got to be a goodie for a¬†spoonie?¬†

Tea is oft purported to be the cure for everything. Personally, although I like tea, I think stationery is the answer to everything. A nice new notebook, PENS, lots of lovely PENS, and paper, and labels and stickers too … oh the joy! Give me those and I’ll scribble and doodle my way to a master plan. If you’re a stationery/planner geek, you probably already know the joy of just doing a Google image search for ‘bullet journal’ …

A Bullet Journal is essentially – diary/planner, journal, to do lists, notebook, budget tracker … and anything else you need … in one. For me, a bullet journal keeps me on track but does away with the need for a multitude of ‘systems’, and it’s simplified approach does allow you to ‘do more with less’. Click here for a quick lesson if you want to learn more or start your own.

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Journal Geek-ery right there: Just looking at them makes me smile, I am THAT bad

I hadn’t named this latest plan until it just struck me that I usually do – others have been Operation Self Care and Operation Fight Back –¬†and then I knew that I wanted this one to be called Operation Thrive. I feel a bit emotional having just written that, because thriving means so very much to me. I had a taste of it earlier last year – when I had some support for a time. I survived but I plan to thrive is this blog’s tagline. Thriving is my recovery goal. Abuse recovery to me = thriving. I can’t wave a magic wand and cure my chronic health issues but when I’m living my life to the fullest alongside them, that’ll do me! When I’m thriving I’ll know that I’ve won, that despite all the pain, and grief, and terrible terrible loss, and so much time spent just existing let alone living, I’ll know that I’ve made it. I know that I’m already a winner in that I’m not bitter, and because I’m a good person and I am, by choice. very different to the people who abused me. BUT thriving, that’s the ultimate WIN.

Operation Thrive Рplan initiated 10th June, 2017

PRIORITY 1: 

  • WRITING – finally this is coming top of the list and it’s staying there.
  • Ending isolation and reducing loneliness by increasing connection
  • Reinstating routine and regaining function
  • SELF CARE!
  • Being able to get out of my flat – and then get out and about locally
  • Getting my flat ‘immaculate’ ready for a routine inspection by the landlord’s agent
  • Re-engaging with GP and getting vital health checks done
  • Taking steps to begin to tackle disordered eating
  • Psychotherapy/Trauma therapy – it’s difficult to know where to place this because of difficulties/delays with the provision of it

PRIORITY 2:

  • Starting to rebuild fitness – and taking steps to resume physiotherapy treatment
  • Visiting dentist both to resume my treatment programme to restore my smile devastated by a dental phobia caused by abuse, and also to assess damage caused by latest crisis and create further treatment plan. (Delayed by illness and financial difficulty)
  • Optician – ¬†have overdue eye test and purchase new specs. – also delayed by illness and financial difficulty.
  • P.I.P – make a new application for Personal Independence Payments

PRIORITY 3: – can only be undertaken once a support worker/P.A. is in place (assuming the local authority awards funding)

  • Back onto a calorie counted diet
  • Increased exercise – talking walks and going swimming – and once physiotherapy is complete joining an 10 week exercise management programme for people with disabilities/chronic illness – assuming I can get onto it, if not I’ve got a Plan B ūüôā !
  • Getting out and about beyond my immediate area and support groups
  • Restarting hobbies, building new ones and making new connections – join a choir (September) and an art group

There are sub-categories to some of the above – but you get the gist as it stands! Priority 1 is all now either underway or complete.

Getting back to work is a HUGE goal, but as I am not to try to run before I can walk, for a change, I’ve not yet included it on this plan. Once I’m settled into Priority 3s, I’ll add more!

The bulk of my Bullet Journalling is at the moment centred on ‘Daily Logs’ – a list of what’s happening and what’s to be done on any given day, and daily recovery focused journal entries that I’ve called ‘Recoverlogs’¬†– a term shamelessly snaffled from mental health campaigner and vlogger, Jonny Benjamin. You may have seen the brilliant Channel 4 film¬†Stranger on the Bridge about his own mental health story.

To do lists keep me on track but are also a great motivator. It feels SO good to tick … ‘done’ ! Budgeting goes in there too, shopping lists, ideas, thoughts and plans for blog posts, notes for and on therapy sessions, and so on. This plan is no small undertaking. There is no one working on it with me, no one to oversee it. My social worker is classed as my ‘key worker’ but is only involved with me as far as carrying out a social care assessment and managing the application for funding to pay for some support. My GP doesn’t know the half of it, as there is never enough time to fill him in on all that’s going on for me. I hope there’ll be an opportunity to share the plan with him at our next appointment on 3rd July.

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Daily Log: 6th April, 2017

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

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

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

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

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

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. 

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.