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

 

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

  1. Well they say the medium is in the message! As ever, your bravery and honesty in just coming forward and saying how things are does you great credit – I certainly empathise with a fair few physical details to say the least!
    You’ve done really well to get all this ‘into print’ and that cup of tea is richly deserved. Enjoy your brew! x

    Liked by 1 person

  2. Keep writing is all I can really say. I’m here cheering you on to face all your challenges, and I really appreciate your honesty. If I can get myself together you may eventually get something in the post too! xxx

    Liked by 1 person

    • Hello my lovely friend!
      Thanks for reading and commenting, I really appreciate it. Honesty means so much to me, particularly as I grew up in an environment fuelled by lies, I really appreciate people noting mine.
      It’s always lovely to hear from you in any form, but know that I appreciate how much it takes to do just the basics.
      I keep remembering to reply to your DM then promptly forgetting again before I’ve the spoons to do it! I’ll get there.
      Lots of love to you xx

      Like

  3. I would not be one to tell you to be positive. Posting this was positive enough for one day, I’m sure. And that’s good enough for me.
    I have an incurable skin problem called Pityriasis Rosea. It causes unbearable itching on parts of the body, mostly on my chest at the moment. When it is bad, I get very down with the uncontrollable scratching, and the soreness that follows. I can well understand how added to all your other issues, skin problems can make you feel even lower.
    Compared to last year, you are definitely opening up more, and whether that involves ‘toilet talk’, or any other conventionally unpleasant things, is of no concern to me. I just think it is good that you are ‘talking’ again.
    Best wishes as always, Pete.
    (I am having lots of issues with WordPress, so had to find this post in the Reader.)

    Liked by 1 person

    • Thanks Pete, always good to hear from you. I hope I am being more raw, more real, having realised last year that I needed to be more so. Some older posts don’t ‘sound’ like me to me, either because I was experiencing some level of dissociation when writing and/or because I waa deploying the compulsive ‘brave’ front that I didn’t even realise I had, partly to protect myself and partly to sanitise my story for others.
      I hadn’t heard of your particular skin condition but will look it up out of interest. I feel for you. I can usually bear the itchiness of general eczema but the itching of pompholyx is close to unbearable. You want to tear your skin off amd then as you say, it’s so sore.
      I think we also have BPPV in common, don’t we? Vertigo with the nausea, debilitating dizziness and ‘spinning’?
      Word Press, after alerting me to my unpublished drafts, keeps telling me that my drafts folder is empty, leaving me thinking I’ve lost the lot! It takes a bit of a faff to find them, they are there, presumably that’s a glitch too.
      Best to you . x

      Liked by 1 person

  4. I would love to send you a postcard, or lettter. I know I’ve said this before, but tmy degree took over every waking minute. Now that I’ve finished, time to get my sh*t together.

    Liked by 1 person

  5. Dear Heart: I just found you. I am a lifelong CPTSD and DID seventy four year old woman. Have decades of therapy in me and yes – my “heart is set on living” – Thank you! I grieve that your life is so difficult. I just followed you. I wish you spoons for many things. Write when you want/can. I look forward to reading. Thank you again. TS

    Liked by 1 person

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