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

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

Well … what a difference a day makes!

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

You might think me weak.

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

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

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

Yep, she did.

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

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

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

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

***

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

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

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

“Let’s have a cuppa”, she said.

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

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

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

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

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

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

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

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

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

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

Heart x

 

 

 

 

 

 

 

 

 

 

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

 

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. 

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.   

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. 

 

Daylight and a whiff of fresh air

It’s 6pm. I’m sprawled on my bed, tapping this out on my phone, squinting because I’m tired and I’m not wearing my specs. 

I’m feeling sore (meaning in this case in pain rather than angry or grumpy, should I happen to have any American readers :)) but I’m also feeling accomplished.

And here I relent, shift myself to close my bedroom window and the window blind, before putting on a light and then donning my specs after cleaning them. 

It’s not easy to type a blog post on a phone when you need to hold said phone at arm’s length to prevent the text from becoming blurry. I really need to visit my optician. I was due to have an eye test last June but have put it off because for now I can’t afford to buy a new pair of glasses.

Still, I digress, I’m feeling accomplished because I’ve had a productive day … although perhaps not what many people would consider all that productive or fruitful.

I spent an hour detangling my dirty matted hair; cleaned my teeth and took a shower for the first time in a fortnight, before getting dressed.I stripped my bed and threw open the bedroom window, giving me my first clear sight of daylight and.hint of fresh air in two weeks.

I liberated my kitchen from under the detritus strewn worktops by way of three dishwasher loads, a sinkful of dishes, and much wiping and tidying. 

With seven extremely brown bananas begging not to be wasted, I baked a quick batch of banana and oat bars using four of them (I’ll make a banana loaf tomorrow to use up the rest), four cups of organic porridge oats and eight tablespoons of milk. They make a healthy snack. They’re pretty irregular in size, today was not a day for perfectionism! BBC Radio 4 was a very welcome companion, particularly the engrossing Resistance by Val McDermid.

I cleared and dealt with the mound of mail piled behind my flat door, and organised a batch of recyclables.

I composed and sent vital emails to my physiotherapist and a local advocacy service. I’ve crunched my way through  a bowl of cornflakes, quaffed a very large mug of tea, and scoffed a couple of the banana oat bars. I’ve blogged … twice!

I am very tidy and very organised and other people often describe my home as immaculate. I care about and take care over my appearance. I’m also resourceful, driven and very self motivated. Exceptional circumstances left me unable to take care of myself or my home in recent weeks. Whatever you might imagine, I doubt that you could guess correctly … 

And on that thrilling cliffhamger, for now I must stop writing for the sake of my increasing pain levels, and your attention span ;), and I must remake my bed before I seize up entirely! 

See you anon … 

A new group … or Day 5 of The Rest of My Life

Today has been particularly challenging. I’ve been reeling from big news that I received yesterday. It’s triggered the pain of loss and exacerbated intense feelings of loneliness.

I woke very early this morning – sometime around six o’clock. Realising that I wasn’t about to get back to sleep easily, I set about being productive and wrote a blog post. Still the difficult feelings persisted although I continued to be productive but carefully pace myself, and also took time to relax. Around lunchtime, feeling worse, I took myself off to bed, in the hope that a nap might help. Sometimes it’s the only option to try to halt a complete mood crash and descent into crisis, when no support is available. I slept peaceable enough and woke around 3:30pm, at first slightly disorientated. My mood was still flat.

I knew what I must do and that is be productive again. I set the dishwasher going, refilled my water jug, took some painkillers, tweeted the link to my earlier blog post, brushed and straightened my hair and put on some make up before sitting down at my desk to write this post and send a couple of important emails.

I’m due to go out in a little over an hour. I plan to try out a local craft group. It’s held a short walk from my place, lasts just 90mins and there’s free tea and cake! I am so isolated and the more I can engage, #spoons permitting, the better. I am anxious about going along. My comfort zone is to be on top form in the company of others, which, in my situation, is quite frankly exhausting. The aim this evening is just to get there and try not to put myself under pressure to perform. The aim is to make that effort but not strain myself. After all, this is supposed to be about getting fun and engagement into my life!

Wish me luck!