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

 

Self-styled ‘abuse survivor’ … and proud?

I came across this statement on Twitter recently. It pulled me up short.

Abuse survivor opinion tweet

I hadn’t gone looking for it or anything like it. It appeared in my timeline, ‘retweeted’ by one of the people I follow.

As I read the words of the tweet, I remember thinking that I’m a ‘self-styled’ survivor. I also remember that I didn’t have the slightest urge to rage at this tweeter and that made me smile. There have been times when I would have felt very angry indeed, as were many of the people who replied to the tweet on Twitter, hurt on behalf of all ‘survivors’, and so got myself very worked up in spirited defence.

It’s perhaps a measure of how far I’ve come that I was able to quietly reflect and focus first on reaffirming for myself why I sometimes choose to declare that particular status and, with another smile, realise that I feel confident in it. I have gone on to wonder in the days since I read it what might have prompted such a statement from the author of that tweet. It could simply be the work of a ‘troll’, someone who gets a kick out of making inflammatory statements online seeking a reaction, particularly one of hurt, from others. I deliberately chose not to look up the author of the tweet, for the sake of self-preservation, at a vulnerable time. However, since writing the bulk of this post I have now taken a look. I saw that the author defines herself as someone who writes about false accusations and ‘pseudo victims’. Sometimes people make things up, some people do generally like to play the ‘victim’ in life. I’m not deriding the woman, I haven’t looked deeply enough to know what she’s really about. I’ll just say that I think the tweet that prompted this post was misguided.

However, this post isn’t really about that tweeter. This post is primarily about me. I know, I am such a narcissist …

I wanted to write this post because communication is hugely important to me. I believe that good communication is fundamental and can be a real force for good by facilitating greater understanding, Unfortunately, in the years since my status as a survivor of abuse became apparent I’ve learned that many people don’t care about much beyond themselves and their own. Empathy and understanding are too often in short supply, while intolerance and ignorance proliferate. What are prejudice and intolerance if not a lack of knowledge, more specifically a lack of understanding and the absence of empathy? Add fear to ignorance, and watch intolerance and prejudice spread like the proverbial wildfire.

I want to reach out to those people who do care enough to want understand more than their own immediate experience … those who can see past the end of their own noses. I know, now who’s making inflammatory remarks?! What the hell: I’m not perfect and I do despair of reluctance to take a broader view.

I don’t wear the label ‘abuse survivor’ like a badge. It’s not who I am or what I’m about but it is a large part of my experience. I was abused for many years, and beyond childhood. The effects of those abusive experiences have been devastating and have pretty much decimated my life – wrecking my health and costing me, among other things, a career, relationships and a family of my own. I don’t say that lightly. For me, to ‘whinge’ is to cringe; I’m relentlessly positive, driven and upbeat and find it difficult to be otherwise. I’d rather pull out my own fingernails that have anyone think me a negative or downbeat sort of person.

I don’t declare myself abused and decry the terrible impact of it for fun or attention. I say it because those are the facts and because the impact was so great that recovering myself and my life became a full time occupation. I use the term ‘abuse survivor’ when I need to begin to explain my circumstances and also to connect with other survivors.

My Twitter bio. includes the phrase ‘abuse survivor’. Despite the title of this post, I actually don’t see myself as being a ‘self-styled’ abuse survivor. I am a ‘self-styled’ Wordsmith. That word, a cheeky nod to my love and life of writing, also appears in my Twitter bio. Describing myself as an abuse survivor is nothing more or less than a statement of fact. I use it on Twitter because it’s there, and via WordPress blogs, where I’ve found it possible to connect with other survivors – for mutual support and learning. It’s not to say ‘oh poor me‘ or ‘oh look at me‘. Given the amount of shame that survivors feel – that one is pretty much universal – that’s hardly likely. It is to say here I am, this is a part of my experience and I’m here if you’d like to connect. 

Where does pride come into it? Well, I imagine that ‘survivor pride’ … no, as far as I’m aware that isn’t a thing nor am I trying to make it one. I use the term loosely for the purposes of this blog post only … is something akin to Gay Pride. Once again, it’s not about narcissism. We don’t have ‘Heterosexual Pride’. We don’t have it, because we don’t need it, anymore than we need ‘White Pride’. Homosexuality, however, has long been the subject of oppression, abuse, ignorance, intolerance and prejudice. It remains illegal in parts of the world, and persecution is not uncommon.

If I’d held on to my sense of self faced with that lot, I’d be damn proud too.

And that’s how I feel about being proud to be an abuse survivor. I can’t change what happened to me, it was vile and appalling and has come close to killing me more than once. I’m not proud that it happened but I’m proud that I am not bitter, that I am a kind, caring, empathetic, inclusive, creative, vital … and witty(!) … person in spite of it. I’m extremely proud that I’ve achieved that after such terrible experiences and in an ongoing fight to thrive in the face of a scarcity of empathy and appropriate support and resources.

Like so many things in life, a ‘one-size fits all’ approach does not apply to ‘abuse survivors’. We are not a homogeneous group. Each survivor’s experience of abuse is different – abusers too have abuse in common but are otherwise varied. Abuse is often a life-altering experience with recovery sometimes life-long, but there are some for whom the impact is smaller. There’s no right or wrong way to be an abuse survivor. It is what it is according to each individual’s experience.

I have encountered enormous strength of character, courage and kindness among survivors. But that’s not to say that these people are ‘saints’. They are real people – as complex and varied as anyone else – who happen to have also endured something truly terrible. Abusers don’t discriminate, they’ll abuse whomever or whatever they can get. Abuse happens in all areas, all walks of life.

I could describe in graphic detail some of the abuse that I have experienced and that of other survivors I have got to know, either through work or friendship. I have knowledge that bleach couldn’t sanitise, but bluntly disgorging it here to attest to the veracity of the ‘abuse survivor’ would be crass. That’s not to say that I don’t think greater awareness of what people have to endure, survive and how they can struggle to go forward in life, and why, wouldn’t be helpful.

I believe in freedom of speech. That author of that tweet exercised hers. I’m happy to say that I’d fight for any abuse survivors right to declare themselves as such, and for their freedom of speech.

Operation Self Care

Regular readers may remember Operation Fight Back  – my action plan of early 2014 to help me to cope following the breakdown of my marriage and subsequent illness – here’s a sample. I needed to be as well as I could be in order to cope with the impending search for, and move to, a new home, in addition to my continuing efforts to rebuild my life – studying, plans for self employment etc. As it turned out, there was much more with which I was going to have to cope.

My health, which is already an issue, has suffered greatly because of all of that and particularly the ‘straw and camel event’ of Spring 2015. You can read more about that here and here.

I’ve written about self care on several occasions – you can find those posts, should you wish, by clicking on ‘self care’ in the tag cloud on my homepage. Self care was once anathema to me. My experiences of abuse led me to believe that self care was self-indulgent and that to indulge oneself was very wrong – certainly, at least, it was very wrong to indulge MYself in any way. I learned that I should … must, flog myself, metaphorically speaking, until I bled.

I’ve undergone several periods of counselling in the years since my abuse was disclosed and I cut myself off from what remained of my family. In the early days of counselling I learned to do away with the word should, replacing it instead with could. I also learned to have compassion for myself and that self care is an essential part of life. I learned that I am worthy of care. I also learned, after years of giving from an ’empty place’, that you cannot take care of others if you do not take care of yourself. I do have a tendency to forget the latter, and need to be reminded of it!

I know that self care is key to my being able to keep going … and ultimately to fulfil that dream of truly living. (I also know that I can’t do this alone and will need the help of others, but that is for another post.) There is much to say about self care and I know I will return to it. For now here are the basic tenets of Operation Self Care:

  • I will take care of myself physically – that includes showering regularly and brushing my teeth (depression can make you smelly!)
  • I will not withdraw but will connect with others as far as possible – using Twitter and my blog to supplement RL contact
  • I will write, write and WRITE some more – you can read here why writing is so important to me. I realise now that I have been continuing to let it fall off the bottom of my to do lists and how unhappy that has made me. I can still struggle to prioritise my needs, but I am determined from now on to always prioritise my writing. For starters, that means blogging daily, as far as is humanly possible.
  • I will do all I can to nourish myself with home-cooked food, despite my lack of money. You can read more about my new found connection with food and cooking – after abuse disconnected me from it – here.
  • I will always PACE MYSELF, I will acknowledge that I am a #spoonie, and that I am facing really challenging circumstances that would challenge anyone.
  • I will try not to fear judgement and will remember to tell myself that if someone thinks they could do better, that I’d like to see them try 😉
  • In addition to writing, I will consider other ways to incorporate things that make me happy into my life.
  • Exercise will form part of Operation Self Care, as it did Operation Fight Back, more about that in a future post.

As I have been writing. a veggie chilli has been simmering nicely in the kitchen and a second load of laundry is doing its thing. I have twenty more minutes on the clock* before I know I must stop, take time to eat and make every effort to unwind (it doesn’t come easy), before an early night. My housing support officer, newly appointed in light of the ‘straw and camel event’ and my subsequent decline, is visiting me tomorrow morning and I need to be in reasonable shape to best cope with that. She will be bringing me my first food parcel, after referring me to a local food bank; I’m still trying to process that.

*I can feel my #spoonie symptoms starting to make more of a nuisance of themselves. I hope to publish this post, send a tweet or two and rustle up a quick email reply to a pal, before the sands run out…

TTFN x

Getting on with it and why sometimes you really shouldn’t

When s**t happens, that’s life and you’ve just got to get on with it … right?

Yes, and no.

I’ve experienced so many shattering events, I could make a world record winning mosaic from all the pieces.

I’ve picked up those pieces and I’ve carried on time and time and time again.

In yesterday’s blog post I mentioned ‘a straw and camel event‘ that happened earlier this year, so called because it followed a series of awful events but was the one that broke me. It was the straw that broke the camel’s back. Although, reading about the origins of that idiom, I realise that my ‘straws’ were actually rather more ‘tree trunks’, so it’s really not surprising that this camel’s legs buckled.

I know a lot about getting on with it.

Events such as losing a parent to suicide at the very moment I reached double figures and simultaneously being cut off, without warning or support, from all connection to that side of my family, were treated with about as much gravity as a broken fingernail. So what? Get on with it! The message was clear. It became a familiar pattern and I learned to ‘suck it up’ no matter the tragedy, trauma or difficulty. It’s part, but by no means all, of the reason why I endured an abusive family situation well into adulthood (I was tempted to write horribly abusive, but there is no need to clarify. Abuse is abuse, no matter the type or form; it’s all horrible.). It became normal to me to have devastating things happen – witnessing extreme violence; being assaulted; losing all my family  – yet put a smile on my face and get on with it without complaint. Despite having no real understanding of how bad things were, I still felt the effects of the bad stuff. For a long time I just didn’t know why I felt them.

I know that years later I am no longer the closed book that I became, as a result of the culture of silence so often encouraged, or imposed, in an abusive environment. I know that in different circumstances I would always have been an open and honest person and I’m glad to have at last been able to grow into that person. I know that I am often very matter of fact about things that have happened in my life, things others would deem alarming at best (ironically, I am horrified by similar events happening to other people). I know that stems from having to just get on with it. That experience normalised terrible things for me and put me at further risk.

After the straw and camel in late spring, life stopped. I withdrew. I could no longer cope with doing … with living, much less with seeing others able to live their lives. I retreated into my own special sort of stasis. It’s a coping strategy that’s sometimes helpful, sometimes not. (I long to get to a stage where I can abandon it) A wonderful psychotherapist, who helped me a great deal, described it as being something like a animal frozen with fear at the point of an attack. Unable to take more pain, hurt or disaster I disconnect from the world, it can’t get me if it can’t reach me. I lost the entire summer that way. What a waste, right? I agree, but* …

My username here, and on Twitter, is borne of a desire to live life to the full, to be true to myself and to really live, not merely exist. I am very much a ‘do-er’. I love to be productive, creative, busy and active. I am ambitious. My ‘modus operandi’ is very much to grab life by the horns and, given half a chance, ride the heck out of it. I don’t want to waste a moment …

*With the best will in the world, it doesn’t always work that way. Sometimes you can’t just get on with it. Sometimes you need time out. Sometimes you need help and support. A little compassion and understanding go a very long way.

There are those who will argue. Like the person I saw claiming on Twitter this weekend that depression (just one of the many effects I’ve felt) is a choice not an illness. Grrr.

Please don’t judge. It’s a cliche, but I do believe that, for the most part, you cannot judge a person until you’ve walked a mile in their shoes. Sometimes you just can’t get on with it and nor should you try to do so.

When I am vulnerable, I do worry about being judged. I worry about it very much. I know it comes of being told I was useless, weak, filthy, dirty and more … ad infinitum. That was abuse, it wasn’t fact. I have learned enough, developed enough and recovered myself enough to know that I am not ‘lacking’, but I still fear being deemed so, vulnerable as I am. I fear I won’t be helped or treated with kindness but could instead be blamed. I have to try to hang onto the better part of me that says … You think you could do better in my situation? I’d darn well like to see you try!