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.   

Sunshine, Sleeplessness and Soporific Solutions

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

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

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

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

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

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

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

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

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

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

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

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

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


Too much? Too bad!

If you read this post I hope that you’ll forgive me the cheeky title :).

I’m aware that I’m suddenly posting very frequently, and apologise if you’re trying and struggling to keep up but I can’t stop just now because it’s doing me good. 

I don’t know how long it will continue. I’ve often aimed to post daily but have rarely managed to post even weekly. The last thing I expected this week was to suddenly find myself posting several times a day!

It is really helping me, by providing me with an outlet, giving me a sense of connection, and it’s also helping me to celebrate my achievements and keep motivated. 

 

Eating Insoles

Since I posted Terror earlier this evening, or rather yesterday evening as I’ve just spotted as I write that it’s 12:01am, I’ve ventured into my kitchen, consumed a catarrh pastille, made up a large jug of powdered skimmed milk in the absence of any fresh, taken my daily medication for my digestive disorder, written and published a second blog post and fiddled about with some of my blog settings. 

Said catarrh pastille was rather pleasant, at least in the context of I’ve failed to clean my teeth for almost two weeks, I haven’t eaten or drunk amything in at least 24hrs, my mouth is like the bottom of the proverbial budgie’s cage … this pastille is nectar! 

Said meds should be taken first thing every morning, at least 20 minutes before I have anything to eat or drink. My usually highly organised routine went out the window as crisis took hold and continued to deepen. 

The powered skimmed milk is entirely palatable. That is except in tea or coffee, alas. It will be far more enjoyable than the Sainsbury’s ‘Basics’ Cornflakes which I’m about to pour some of it over. They taste rather like I imagine the insole of a shoe might taste … 

I’ve smiled more than once while writing this post. I amuse myself if not others 😉 . But, to be serious, I haven’t been able to smile in quite some while. I am aware that those very real terrors have not diminished let alone gone away, and that desolation still lurks with terrible menace, as though it were ready to pounce and suffocate the life out of me.

It seems that this evening since writing that first post, I’ve managed to make a space in the fog to just be for the time being. 

Inspired by an earlier commenter, I’ve also delved into my bedside drawers to retrieve this lavender sachet – a one-time gift – and am ‘partaking of its aroma’ at intervals!