Tuesday 7 August 2018

Crosstown Traffic

Sorry about that. Away for longer than I thought. Quoting Dave Grohl, traffic was a bitch...

Much stuff has happened since that last post in February of last year, not least my appalling memory allowing me an accidental break from blogging because I forgot to renew the domain on this little place. Oops.

And so, here I am, asking you to give up 6 seconds to endorse me via that giant Private Detective badge over on the right 👉

Best Kept Secret. That's my category on the WEGO Health Awards. I've known about WEGO for several years. Have you heard of them? A community of people, across Earth, doing what they can to help others who have illnesses, to bring together minds and knowledge, connecting groups and reducing loneliness.

Modestly, I don't know why anyone would think to nominate me for that because, truly, I don't consider myself worthy of being nominated. Yes, I talk/tweet/blog/post about endometriosis because it's still so unknown to so many people, worldwide, and enormous numbers of people suffer, struggling each day to live with this terrible disease, sometimes without any hope of a brighter future.

But, does that mean I'm nominee-worthy? I'm not sure.

If you are, and want to bring relief from hidden illnesses by helping me to build my little leopard-print platform, please click or tap that Big Orange Button.

Better, and more interesting, posts soon. Thanks for still being here. It means so much.

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Thursday 9 February 2017

House of Pain.

"It's really good", my GP said while nodding. "Not that you're in pain; the way you're talking about it."

It was while we were discussing my changing pains, and how to deal with them, that my pelvis helpfully reminded me why I've started to take an extra daily dose of co-dydramol. Next month marks three years since my hysterectomy and, although it hasn't what might be called by some people a "success", for me it has been worth every slice, stitch, and scar.

- The pains have returned but I don't bleed for Britain now.
- I don't have to raid the local chemist for all the Kotex Night-time mattresses for "normal" days.
- Towels don't have to be laid down on my seats and bed to prevent stains from leakages.
- The floor doesn't suddenly hit me in the face as I collapse.
- I can wear pretty white underwear whenever I want!

March is significant in my life for The Big Op but, also, it's the month of international endometriosis awareness, which I found to be literally painfully ironic, since it was also the month of my first and diagnostic laparoscopy, seven years ago. I had been due to be operated on during the UK's week of awareness but was postponed until the next week. The date on which it was carried out was 15th March. Beware, indeed: only 4 years and 3 days later would most of my bits be gone. It's a shame, I think, that I wasn't given the opportunity to have a celebratory Burning Of The Womb festival over the local park. "Inappropriate", apparently.

As I type this, my heat pad is behind me, soothing my aching back. A hot water bottle is helping in my almost-futile attempt to relax my tense stomach muscles. My favourite, ancient blanket is over my lap. King Arthur is nestled next to me on the blanket. I'm yet to get up to take the last dose of painkillers for today. From where I'm sitting to get to the kitchen, I have to walk only 10 metres, if that; lack of energy right now means I can't face it. Can't face the lower back ache-spasms when I begin to get up, or the pointed pulling inside my pelvis of the endometrial glue, or the wobbliness of my legs because of the fibromyalgia.

Again, I'm not complaining about it all, though I know I could. And this is me saying that, having been out today for the appointment with my GP, then to get the 5 or 6 prescription items and several bits of shopping, I am now shitty-shit-shattered. It's not tiredness. It's not lack of sleep. I mean, it is, but not just a few hours lost. My eyes are puffy and feel heavier by the minute. Not moving my legs, they feel as if they're burning and leaden to the bones. The stiffness crackles and snaps in my lower back, thanks in part to a fractured vertebra.

"You look really well!" is never not welcome to hear, as long as it's about me, obviously. I'm being honest. And modest. When I've been waiting for h-o-u-r-s for pains to ease off enough to walk without nearly falling, when I've woken up enough to counteract the groggy from the meds, when I've accomplished walking up the stairs without having to stop? Hearing that I look "well" is terrific! It's also indicative of my excellent and under-reported acting skillz, yeah? And make-up. (Big nod to Clinique.)

Yesterday, I descaled the kettle and cleaned its soleplate. Today, my arms and back hurt like a bitch on heat. I wasn't dressed until 1:30pm, and I didn't have breakfast until 2pm. (BUTTERY CRUMPETS.) This is a 3-dose day. This is a hard day. Tomorrow will probably be a hard day, because of going out today. 

Even I've been impressed by how I'm coping with all this. This. Emotionally, facing the angry truth of being another step nearer to morphine, the past few months have been... tough. That's contributed to my being even more rubbish at communication with friends. Having to have that extra dose of painkillers means that, like the 2-doses-a-day time, the 3-doses-a-day time will also have its limit. when that happens, it'll be stronger painkillers. And then more of those. And then morphine. And, at that point, it's a Maintenance Surgery kind of situation.

So, personally, mentally, emotionally, but not physically, I'm feeling pretty, pretty good, despite the ouchiness of endometriosis and all its bastardy facets. It's just that niggly knowledge bit I keep thinking about. I keep staring. Standing and staring. Thinking about what I'm going to do. Thinking about when it'll change again. I know it doesn't really help me to achieve anything "constructive" but, as I said to my GP, I am a person (allegedly) and I have to go through these thought processes *shudders at phrase* to find better ways to cope with it all. Which I am doing. See my Instagram post here for pictorial displays of therapy.

The acceptance of pain and fatigue and their effects isn't negative or pessimistic; it is wholly opposed to anything like that. I can't prevent the pains, so I have to be re-active, instead of pro-active. When I feel the pains, I take the painkillers, and that allows me to have some control over how it affects me, rather than the ideal, which is to control it. Which I can't do.

And, for every smile you may see on my face, there will be a dozen or so frowns because of the pains within my abdomen.
And, for every bad joke you may hear me make, I will gasp uncontrollably because of the insufferable adhesions.
And, for every pointlessly-loquacious update I post on facebook or twitter, I will be temporarily struck by an inability to speak or move from sudden and dreadful pains.

With me, as happens with invisible illnesses, what you see is what you get, but with multiple added bonuses of a heck of a lot more.

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Monday 4 July 2016

Balkan at change.

A thoroughly lovely neighbour had a sort through of some stuff last week, and what she didn't want was going to be given to our local Sue Ryder charity shop. Thoroughly Lovely Neighbour said that, if I wanted the Maritsa 30 typewriter and replacement ribbons among the selection of stuff, I was welcome to keep them. (I didn't just take in to my possession the typewriter and ribbons; I donated to Sue Ryder online.)

Nostalgia. To quote Phil Daniels, I love a bit of it.

Pressing the keys shows the actual printing of the characters on the paper after the satisfying clack of the metal. The crystal-clear "ping!" of the bell at the end of a line is enchanting. At the time I opened the lid and first saw it, I had a stubborn headache. Despite that, I embarked upon an experimental session of clackety-ping. It's not a piece of aesthetic design like a 1920s-era Underwood but, still, it is a tremendous machine, even just to look at.

The Sue Ryder charity shop, to which the typewriter was previously destined to go, is, by a recipe of some luck and good placement, among a very select few of my favourite second-hand repositories. Before I realised that abundant treasures so often rested behind the doors of charity shops, I was so ashamedly snobbish, thinking that I was "better" than venturing to one.

What. An. Idiot.

Happily, for charities and me, I have, for two decades, fully understood the marvels of the people who work there, as well as the reasons for the shops and the stock they're given.

As is usual with me and my depression, I only notice that my mental (in)stability is at such a concerning level when I consider that not waking up in the morning is preferable to anything else. During my most recent emotional and mental breakdown, my wonderful GP and I agreed to increase my anti-depressant medication. I'm certain that that's had a noticeable influence on my moods, and my long-absent and now-renewed sense of hope. The way out was blocked. The tunnel got darker. The last of the candles had melted and the flame of the future had fizzled to fuck all. I hadn't quite realised just how lacking hope has been in my mind or soul or whole being, whatever you may call it. Since my GP is wonderful, he wonderfully encouraged [frowned at] me (again) to begin the looking-for-volunteering process. Again.

I did.

A week later, I spent a few hours helping in one of my favourite charity shops. I washed crockery that'd literally just been donated, so that it could be tagged and displayed on the shop floor, immediately. I learned about the rotation of stock, about tagging clothing, and how the donations are sorted. Something always has to be done, be it dusting the shelves, restocking the linen rail, replacing the till receipt roll, emptying the box of hangers behind the counter, or one of myriad other tasks there wasn't time to talk about.

Only three hours was I at the Sue Ryder shop, and I wasn't doing anything like strenuous or difficult. Such are the physical effects of depression, endometriosis, fibromyalgia, hypermobility, and spondylolisthesis upon me that, at about 12:30 - 2 1⁄2 hours after I arrived to help - I felt heavy and stiff, with endo flaring up, and my back and legs feeling full of leaden aches. (I listed the ails alphabetically, did you notice? I'm aiming for the full 26. I've heard you get a limited edition kettle if you collect them all.)

The day after, I ached and was decidedly energy-deficient, and with the kind of post-activity fatigue which renders me unable to do anything, much, except stare at nothing in particular and mumble incoherently. Wiped out. Exhausted. Broken.

Feeling so pained and drained after just a little less than three hours of "light housework" was a distressing reminder that I'm really not so well. Complacency, existing every day without changing routines (or having any), or pushing the limits of capability, by even a minuscule fraction, is not good for my soul. I know it. Trying to do something I wouldn't usually do, no matter how passionately I feel about doing it, unfailingly uses so much energy emotionally and physically. It doesn't deter me from doing it again, or doing it less well or for not as long.

It's just inordinately difficult to get through those post-activity days, and to remember that those "hangover" symptoms won't last for much longer.

There is no simple solution to feeling fatigued, and suicidal, and utterly without any spark of hope. As I type, I still have that little tittle of hope I mentioned earlier.

Stamina? I used to have that. For now, I have a still-sealed DVD of Life of Brian for £1.95, a Portmeirion RHS cup and saucer for £2, two decent-sized floral jugs for £10, and a kosher West Ham shirt for my Dad for £3.25. I bloody love charity shops.

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Friday 29 April 2016


Cancer was the reason our lives were irreparably changed, seven years ago. And exactly seven year ago today was when my Mum had to have a mastectomy.

A Sunnier, warmer day than today, it's still unforgettable, the sounds and smells of the ward still lingering in my senses' memory. Or my memory's senses. Or both. Whatever, it's all still there. It's still upsetting to think about.

More pleasingly, today is also the last day of Mum's treatment; the final Aromasin tablet will be taken tonight.

This post doesn't really have any point. I don't think it has Anything New in it. I just wanted to let you know that today is important, and that, if I hadn't posted something today, I'd've regretted it. I wanted to also say that I STILL haven't given up collecting stuff to sell (100% for charity, every time) on ebay for Breast Cancer Care, Macmillan Cancer Support, and Cancer Research UK.

Some of you, my delightfully-kind-and-patient friends and readers, will know that my own shitty health guff has become a bit overwhelming in the last few years; I don't feel that I've managed to achieve the being-in-control-of-my-ailments position to satisfactorily sort out the mundane larks of "every day life", never mind the absofuckinglutely joyous "job" of listing and selling and sending the CDs and signed posters and myriad autographs.

What Lisa managed to say, more eloquently than I could, is that the bastard that is cancer affects everyone. Without any doubt in my mind, being the person who has it can be wholly destructive. I don't know how people do it. I don't know. I know that they do. But I don't know how.

I think that, sometimes, some people can forget that the family members and friends who see and watch the physical and mental changes can suffer as much as, albeit differently, the person who's been diagnosed. It's not only the person who has to have the surgery and treatment and procedures. Everyone has to get through it, somehow. In some inexplicable way, everyone has to grasp at the elusive, invisible threads, to hang on, to guide them, to find any kind of way through the emotional and soul-draining hell of cancer.

Today, we are taking it easy.

Today, we are blanketed, we are cuddling cats and mourning 21-year-old Pieman.
Today, we are drinking hot and cosy drinks and dunking biscuits.
Today, we are watching Jericho (and Cousin Rose-spotting!), Gemporia, and Poldark.

Today, we are still here.

Tuesday 5 January 2016


A whole decade. Ten complete years since my Little Nan went and died with a broken heart. I still believe it was "her time" and that she was ready to go. Having that belief didn't, and still doesn't, of course, make it any less devastating, nor the grief less immense.

I can't count the number of times my likeness to hers has been mentioned by so many people, and I smile every time. She was lovely.

So unspeakably proud and brimming with admiration am I, knowing what my Lovely Little Nanny Annie had to endure as a child - the poverty, the losses and grief, the war.

She was incredibly generous, exceptionally so.
She was dryly funny.
She was f-a-n-t-a-s-t-i-c in her stubbornness.
She had wavy, unbelievably-thick, Irish auburn-brunette hair (exactly as mine *smugface*).
She never missed an episode of Coronation Street if she could help it.
She was proudly, brilliantly, East London working class.
She had the softest skin, and passed her love of rose- and floral-scented talcum powder to me.
She was superstitious; her funeral was on Friday 13th. The irony was vast.
She loved her soft, cosy, knitted cardigans, with shiny gold-tone buttons.

While I can believe that it was ten years ago that she died, I can, likewise, believe that it was yesterday, so vivid are my memories of the day.
I wear her wedding and eternity rings each day with immeasurable love and gratitude, knowing that she wanted me to have them, as her only Granddaughter.

My brother, her only Grandson, and I lost a second, loving, utterly superb Nan on that Thursday in 2006. And, I'm fairly certain that I speak for us both when I say that we love her every day, and still miss her delicious tea and biscuits, hearing her refer to people she didn't like as "bleedin' sods", and her smile-inducing greetings of, "'Ello, mate", with that brilliant chuckle that was uniquely hers.

My last words to her were, "I love you, Nan." - and love her still, I do.

Sunday 21 June 2015

Know your place.

Nicely general-period-pain article about natural relievers in The Independent. Never going to be geared for the terror of endometriosis/adenomyosis pains but still... I dared to glance at the comments. "Man-up" and "stop moaning" and "anything for a quiet life" said by men who were, I think, trying (and failing) to be funny.

When it comes to "normal" period pains, I expect they hurt. I wish they didn't. I wish that they didn't hurt or disrupt plans and exciting times.
I only ever had endometriosis period pains, and the ones I had were (as you may know by now) so appalling and all-consuming that I had to have about 100mg of morphine every day, not just with periods. Every. damned. day.

Point: my Dad was and is not all ewwww and icky and "get on with it" when it came to periods and women's things. He could see how awful it was for me and didn't shy away from comforting or helping when needed. He empathised. He cared. He loved. (Past tense because of post-period era.)

I have some of the most kind and empathetic-to-period/end-trouble male friends I've known. Mark, Simon, Wombat, Lucas, Stephen, to name only several. They have been infinitely more kindly about it all than some female (now-former) friends. ("Have you tried walking when you're on?")

The dismissers are so empty when it comes to empathy and kindness. Obviously. Baffles me. I'm referring to these dismissers here and throughout, and absolutely not all men.

Still seeing so much beautifully-misfired misogyny and sexism on a subject which was hidden and played down (and still is) by the people in charge (i.e. men) shows that the mindsets of those blinkered dismissingers are SO FAR in the past, so opposed to feminism/equalism that they  embarrass themselves with such lack of education. Some said they thought women who have period pains should be grateful that there are painkillers and medications that help some women.


Really? Is that meant to make me rethink my humility? Or put my pain in to perspective? Someone else is OK? Great. We all feel so much better now you made us see it like that. Haven't we been silly?

And the number of times endometriosis-related pains have been apparently-wilfully ignored by doctors - played down, underestimated, plainly ruled out as even existing - can surely only add to that idea of "it's just a regularly-occurring thing that you all have to live with so why are you still complaining?". All for attention. Obviously. We love it.

"You told us it's a taboo subject so we don't talk about it" - "you"? You mean, women? Why is it taboo? Who said it was? And when? Many years ago? When women were not allowed to vote or work? Equality? Pah. Should stay where they belong. Because men said so?

By that way of thinking, does that mean that all women are to blame for you having a problem with talking or hearing about wombs, and bleeding, and sanitary towels, and stained knickers and bedsheets and pyjamas, and the fucking PAIN OF IT ALL? That's not women's faults. Blame blame blame. Don't you ever stop?

If you find a natural solution to your pains, I truly am glad for you. To have a seemingly well-meaning boy tell women so matter-of-factly that "there are options" for treating period pains... it's so unbelievable that it's hilfuckingarious.

[Edit: on 07.08.2018, I removed part of a paragraph, as knowledge and opinion changed re that subject. Learning equals humility. I was wrong.]

Friday 19 June 2015

You make me feel like a...

See, I know I'm bitchy and wretched when the hormones rage. I've known these facts for a painfully and depressingly long time. I do not require reminding whenever someone with "issues" decides to blame me for how they feel when they're having another tiresome tantrum.

No person can make anyone else feel anything emotionally. If you blame someone for how you feel, you give them control of your emotions, of your life, and it means that you don't take responsibility for (or "ownership" of) your own anger or jealousy or feelings of inadequacy or, more wonderfully, your happiness.

No-one made me sad about something; I decided (although, obviously, it's more complicated than "wanting") to feel that way, probably because I care.
No-one made you feel less than good; you didn't believe you were.

It took me decades to realise that, by changing how I think, I know and believe I can and do care less about things that really are not important - or important enough - to me: I AM ALLOWED to not waste my time and effort and golden, priceless energy on worrying about people who don't deserve my precious time; I CAN not concern myself with opinions of people whose only apparent enjoyment is berating so viciously people they don't like; I CAN not pretend to be interested in something which bores me and not worry about protecting everyone from bad things.

We CAN feel those things and not feel guilty. No-one will make me feel guilty for being ill, for being depressed, for not having a job, for being me. I do not let them.

It's been a liberating and difficult process. *shudders at "process"* I didn't know I was capable of not feeling guilt for not doing more at home. I didn't realise until far too late that other people can not make me feel anything, emotionally. Anything. My mind is mine.

Being strong-willed and determined and confident in oneself is not a universally easy way to be. I wouldn't claim to always believe in myself. Health, both physical and mental, are constantly influencing me, in every way, whether I'm aware of it or not. But I will always know that, however and whatever I feel, it is not because someone else has controlled my emotions.

Your mind and your heart and your soul are all yours, and no-one can ever make you be or feel anything. You are, in all probability, magnificent and wondrous and capable of stupendous things.

And my exceptionally-difficult-to-cope-with hormone imbalances still don't mean that other people aren't sometimes whinging, selfish, arrogant little fuckbollocks. It's not actually always me with a problem, or mood, or proverbial bee in my proverbial bonnet.

I am not your emotions, and you are not mine. And that takes us back to the women's magazines of cruel criticising, and blatant bullying, and you'll-never-be-good-enough-you-stupid-big-fat-failure "journalism".

More often than I wish I knew, I've seen people let themselves believe that their emotions are dictated by others. And I've seen both kinds of people become passive-aggressive dickheads.


Really? Are you sure about that?