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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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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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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Today.

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.

Nan.

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.

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.

*tumbleweed*

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.]

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.

YOU MAKE ME SO ANGRY.
YOU MAKE ME SO UPSET.
YOU MAKE FEEL STUPID.

Really? Are you sure about that?

Young(ish), Wombless, and Rather Pale.

Last year, nearly a whole year ago (18th March), I lost my uterus. How careless! I have a beautiful 5-inch-long scar on my belly. Hooray! It is my favourite of my dozen or so scars, not least because I think it vindicates what I said for about 20 years.

My pelvis is still being an idiot, continuing, as it always bloody does, in giving me the pains and aches it always has (since I was 12). Only my left ovary remains of my reproductive system, messed up as it was. GOOD BLOODY RIDDANCE. Not so bloody anymore. HA-HA. IN YOUR FACE, WOMB.

I have to keep my ovary because my team of quite super doctors and I don't adore the prospect of having crumbly bones, thanks to osteoporosis.

This is endometriosis for me. This week is Endometriosis Awareness Week. This month (in some places on our glorious and wonderful planet) is Endometriosis Awareness Month.

Please, don't suffer.

Please, change doctors if your current one belittles your reality.

Please, don't be scared to ask for a referral.

Please, talk about your pains.

Please, ask for help.

Please, don't be ashamed of what you can or can't do.

Talking about periods and vaginas and wombs and fallopian tubes isn't dirty, it isn't weird, and it isn't disgusting. You are not dirty, or weird, or disgusting if you want to talk to someone about your pains and periods and fears. I'm one of millions of women told, for years, it's all perfectly normal. It wasn't. It isn't. And I'm one of many millions of women who don't know what painfree means any longer.

Talk about your bits! VAGINAS! FALLOPIAN TUBES! OVARIES! BOWELS! POO! DYSCHEZIA! Open your bowels and talk about endo.

Time to Talk

Long time, no post. But look! Here's one, now! Here is my #Take5ToBlog post.


1. HI MY NAME IS... Lucy, and I have experienced (and still do experience) acute clinical depression, severe anxiety and panic attacks, suicidal contemplations, and OCD.

2. My mental health has affected every part of my life; friendships, sleep, some semblance of a career, relationships, appetite, education, hobbies, my closest family, and so many more aspects have, in some way, be it enormous or weeny, been affected by my mental health.

3. My greatest source of support has been my parents, as a whole. Together. As one... "thing". (Sorry Ma, Pa.)

4. My hope for the future is that a unicorn will swoop me away to Sparkly Rainbow Land. Failing that, I hope that I'll keep on gaining confidence and be able to volunteer and/or draw for cash, again.

5. I'm taking 5 on Time to Talk day because mental health isn't something to hide or be hidden. So many people experience some kind of mental health trouble, and I think that no-one who has felt anything from a hint of anxiousness or the worst of bi-polar ought to be ashamed.


Accepting things that I can not change has been one of the hardest challenges in my life, and, since I did, I loathe myself far less than when trying to fight it all. Ultimately, when fighting so fiercely to deny what was real, I failed to progress at all, and felt even more miserable, even more of the time.

I don't like any of my mental bothers but I have learned, grudgingly, to accept that they are part of what makes me me. Without them, I simply would not be who I have become, and I'm a lot more kind to myself now (sort of), even though I still occasionally have a panic attack and frequently have sobfests. Or maybe it's because of, not in spite of, those things.


Come, join me on my mental journey! Find me online, but know that I may take a year to respond. Not a year. Exaggerated. A while. Probably.


(This is openly-shared on here and on facebook, so, if you want to pass it on (with credit where due, obviously), please do.)



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On a knife-edge of disappearing...

It will happen soon. But I'll be back. I shall return to my blog, and being my usual idiotic self, and drawing and painting, and crocheting and knitting, and cuddling my impossibly brilliant and affectionate cats. I will be away for a short while. Though, I'm not certain what the official time-length or dictionary definition is for a "while".

In my last blog post, I told you about my January appointment with my consultant. It was ANYTHING but a surprise to me to hear him say there is no other treatment to try in an attempt to ease my pains, that there is nothing else to be done to stop my periods. I knew it a long time ago. Years ago. Nothing. Nothing to be done except the one thing I said years ago would happen. Nothing to be done except ensuring, unquestionably, that I could not have any more periods. Not ever again.

You may have guessed by now that the one thing which can be done to stop my horrendous and appallingly restrictive periods is for me to have a hysterectomy. And, if you did, indeed, say it to yourself, or even out loud (weirdo), you are correct. I have no prize to give you, alas.

But you can have coo over this ADORABLE hamster picture, by dgtecnozero on flickr.

Hormones just do not work for me, or with me. They make me suicidal, every bloody time. I'd stare at all the tablets in my cupboard and wonder how long it would take for me to feel sleepy, to not hurt anymore, to not feel anymore. Too many times I've felt that way because of apparently-harmless little contraception pills or injections. It just doesn't work for me. Everything doesn't work. Nothing has helped enough to make a difference so beneficial that it's been worth carrying on with, even if I did still have some pains or some fatigue. Nothing. Nothing has been the answer.

I'm 32. I can't work because of the pains, the fatigue, the heaviness, the depression, the tears, the unmitigated devastation this damnable endometriosis has brought me in so many atrocious ways, and with such ferocity that, some days, I sob so hard and for so long that I can not stand up, I can not speak for the destruction it's caused. And I can't do it anymore. I can't allow myself to go through these wretched and unyielding periods any longer, to always fear the next one, knowing how they will be but never when, and feeling all the pains days or a week before they start.


I CAN NOT do this ANY LONGER.

I deserve to have a break. I deserve to have a fucking break from all of this, to not be frightened of my own body, to not be a prisoner because of what should be an incidental happening, not THE EVENT. This is not how I thought my life would be. I did not think, all those years ago, in my precious childhood, and limited, solemn, and anxious teenage years that, in my early thirties, I would still be living in the family home, with no job, no ability to work, and claiming benefits because of an illness with no fucking cure. And dammit, I deserve to have a chance to live! I damned well do. It may not happen immediately after the operation but I'll bet I'll be a hell of a lot more unstressed about a hell of a lot. Hell. Yeah?


The operation, on Tuesday 18th March, is to remove only my uterus (and probably my cervix, too, which is good), since I need to keep the now-lonely left ovary in there for my bones, so that I don't develop osteoporosis and they don't crumble, and to keep hormones relatively unwobbly. The hope is that I will be able to DO STUFF. I've yearned, ached, desired to draw and paint and sell the work, and take commissions to draw people's relatives and cats and dogs and horses and rats and who knows what else? But... I haven't been able to. There's been one or two pieces here and there but I haven't been anywhere near well enough to do a "normal" *retches* amount of work. Not even sketching.

Walking upstairs to open the cupboard and my folders to get my sketchbooks, pencils, paints, and pens, then walking downstairs again, and sitting down to concentrate takes away too much energy and it's hard enough to sit on a sofa after taking morphine, trying to focus on anything to take my mind off the pains that won't stop. So... I have to stop them. And this is the only way. The Only Way Is Hystex. TOWIH. I'll have that.

I know that, after my operation, I may still have pains but to not have periods is going to make an extreme and extraordinary difference. And it will, I'm certain, take a very long time for me to be used to them being gone, rather than suppressed for a few months, and I'm concerned about how emotional I may be about it all, when the potential wound is past the ARGH stage. But that's for then, it's not for worrying about now.


And the cherry on the top of the piss-takingly-badly-timed e-v-e-r-y-t-h-i-n-g of it all? I have a period. Now. Just started, two days ago. Just before the operation to stop them. Just as Endometriosis Awareness Week begins in Britain. I did say, didn't I, in that last blog post, that my timing was... well, it's bollocks, isn't it?


In the last week or so, I've spent a lot of time online, updating my LinkedIn profile, (re-)opening my Etsy shop, opening a Folksy shop, creating and editing a facebook page for this blog and one for my general Multicoloured Pop Shop (i.e. pictures and information about my work), promoting my work on Pinterest... (They're all clickable links, by the way. Leading to places with my work and me. Click them, go on...)
Plus, there's STUFF on my Where am I? and My Artwork for SALE pages, in the tabbed section at the top of this page.

I'm really, really trying hard to get a head-start on things before my operation, so I don't have everything and more to do after, while I should be trying not to concentrate but just allow myself to get on with healing and getting better. I'm trying to gather as much business advice from various online places as I can, about accounts, business plans, contacts, connections, new media, and so much more. And it's a hard-going challenge. It's really difficult because of that fatigue and trouble concentrating, the tiredness and headaches, and lack of sleep. For countless years, I've wanted to BE an Artist, instead of just knowing and believing it but not actually DOING it. I've wanted it for so long. And now, for the first time, really ever, it feels like it might actually be a possibility. Really actually possibly. It might actually happen. I know it will take a lot of planning, albeit with lots of leeway for possible unwellness, but even the planning can begin. Planning for actual stuff.



I'll very likely be tweeting my usual crap - sharing megasweet pictures of kittens and rats, and pinning floral cushions and crocheted bears - before the operation. But, until the next time on here, if not before the 18th, look after yourselves.

And, now, I must ensure I rest enough to adequately recover from this, my last ever period, so that I can try to do at least some exercises and walking before my operation. That is assuming it doesn't have to be put back, again; it should've been today, Tuesday 4th March. But now, it's not. Now I have an extra two weeks to prepare, write lists of what to take, especially the essentials - puzzle books, reading book, MP3 player, glasses, phone, spare batteries, all those things. And the medication. They need a whole rucksack on their own. If only I could smuggle several of my most precious people in through the doors of the hospital with me to keep me occupied, and be there when I wake up... You know who you are, and this is for you.






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The Reappearance of Lady Scarfacts

If I were to attempt to blow away the dust and cobwebs from this blog and the path I took to get to it, I could well sneeze for a week, so I shan't do it. I shall simply type and publish and hope no-one notices how terribly I've neglected this place.

Good reasons exist as to why it's been so long since my last blog post; the morphine I have to take each day for the pains is still not conducive to energetic activity or prolonged concentration, and, of course, the ever-present fatigue is rampant. Not rampant, as such, but still there. Here. It's still with me is what I mean. Anyway... Groggy and heavy-eyed, I've thought every day of blogging and telling you about how my pains are, or how the most recent treatment(s) have been affecting me. Alas... I have not.

Last year, on the early-August morning of the day after the nth (actually, the third) operation I underwent to (hopefully) stop my periods *scoffs* and to remove the pesky right ovary, I managed to sit in the comfortable chair beside my hospital bed and scribble down my thoughts for a blog post I would type and publish in the next week or so. Hm. That didn't happen. I did, though, post a wordy-picturey-appy photo of one of my newest scars not too many days after the operation but it wasn't a "proper" blog post, nor do I consider the post, Home, a proper post. But I still have the scribbles! And here they are, just for you, dear reader:


Wednesday 7th August 2013

From what I could gather, I was at least fifty years younger than the four other women on my ward. The only people I talked to while I was in there were the nurses, and most of them were younger than me, which is a strange kind of feeling because I still feel as if I'm in my early twenties, not early thirties. All of the nurses were delightful, with the patience of every saint that may ever have lived. All that patience, all that selflessness, all that kindness. So much of each. And each nurse who helped and tended and literally supported me was full of pure lovely.

I wrote a note stating my solid respect for and appreciation of each of them. On my ladies-only ward was at least one elderly patient with a kind of dementia, and another who was exceptionally cantankerous and demanding, to the point where I felt evermore-compelled to throw a pillow across the room, aiming quite precisely for her head. Shortly before I left my temporary residence in a suspensionless-but-free-to-use-and-pushed-by-my-SuperMum wheelchair, for I was NOT about to attempt to walk the roughly-450-metre distance to the car to go home, I handed the note to one of the nurses. She read it and smiled, and said, "Aww, thank-you. That's really lovely of you, I'll show it to the other girls", which she did, just after. I can not praise those women more with mere words, as wonderful as words are. I felt so safe, so calm about being there, and so confident in their abilities.

As I wrote these notes at lunchtime on Wednesday to pass the time and capture on paper my feelings at the time, Scott Walker was serenading me with tales of Jackie, after The Clash set up a White Riot, and Edward Elgar's Nimrod made my heart swell, as it does every time I hear it. My Puzzler Pocket Crossword Collection book thing saw some inky action while I was in hospital but Sherlock Holmes and his doctor chum remained untouched, sadly.


And there my scribblings finished because Mother Ma arrived and gathered up my bits and pieces, and then we went home. And I recovered, and took things slowly and easily, and tried not to feel guilty about being unable to help with housework and the cats and the garden and so much more. The scars are now pinkish-purplish, with the right-side one still being ever so slightly sensitive and sore at times, and was also the one which seemed to want to keep the stitches in longer than I preferred. Crucially, I am right-ovary-free. Hoorah!

The outwardly-normal-looking right ovary, which I'd said, umpteen times, was definitely making me ill and was the cause for the atrocious pains on my right side was dissected and analysed and was found to be fairly well packed full of endometrial cysts and bits and stuff. Yes, I was unsurprised, too. At my follow-up appointment six weeks later, I did just happen to mention to my consultant that, "I don't have too much pride to say, "I told you so"...", to which he replied, "Yes. Yes, you did tell us so..." and I tried as hard as I could to suppress my smug-but-devastated face. All that time. All those YEARS of AGONY because of a tiny defective egg bag, which "appeared" to be "normal" *retches* but which was utterly knackered beyond repair. Because "it looked normal" on the outside. Lessons must be learned! Surely, they must. I like to think my consultant has learned from me, The Awkward One. Ever awkward.


In January, I saw him again. I told him that, precisely as I feared, aside from the continuing pelvic pains, my periods are getting worse, heavier, more painful, after Novasure. They are doing what I unequivocally knew they would, what they always do - they're reverting to their terrifying and physically- and emotionally-exhausting "natural" ways. So, there's another treatment which hasn't worked and, in my next blog post, I'll tell you the outcome of that New Year appointment, right in time for Endometriosis Awareness Week. My timing is nothing if not late. And slightly impeccable.

(Images courtesy of ManicXMiner, AIGA Design Archive, and Kaye Sedgwick for Endometriosis UK, respectively.

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Scar tissue.

As I struggle to keep my eyes open, I felt a need (for some reason) to show you my biggest cut yet. And it's adorned in a photo with stuff and roses and words and birds through phone apps and photo things.

It's past 2am. I need sleep. Here is one of my battle wounds, healing well with all stitches now out.

Sleep is now.

Home.

Occasionally, I forget what I've just been through, and attempt to cough. And then I remember. And I curse myself. Because it really fucking hurts.

I have four fancy new - and startlingly-neat - wounds, minimal gas pain in my right shoulder, and general post-operative restrictive pains. The hours immediately after I woke up were, without question, up there on the oft-unreachable heights of the times I've experienced my most terrifying period pain.
Post-endometriosis-surgery pains have been almost the same each time, for me; this was different because, as I found out a little later, my surgeon had to use a trocar on my left side to take out the pesky right ovary.

And, as ever, the nurses who looked after me on my ward were FANTASTIC. Such kind, caring, funny, sweet people. Definitely in the right jobs. I love the NHS. I really do.

Basically, I am all right and must rest. It will be some weeks before we - "My Team" - know if things have improved and if the right thing(s) was done. Recovery will be a longer process than I had previously thought; I have to double my three-week assumption based on my other operations. I did add a week to those recoveries but... Hm.

Thank-you to every one of you who sent such kind words and wishes and get well things. 
It's all so very much appreciated, every bit of it.

I have to go, now, to do that resting thing. Until the next, reader...

C. U. N. T.

Next Tuesday.

BAM!

Lightning fast.

Ohh, NHS - and especially the staff in "my" "departments" - I do love you.

Here we go. Again. Cue treadmills...

Unforeseen circumventing.

Laziness/tiredness tells me to copy and paste what I've already told select people, with some editing here and there. So I shall.

Bloody ill people taking up hospital beds. Don't they know my ovary needs to be analysed?!

Because I'm such a hardnut on megadoses of morphine, I'll need a lot more than The Average Joe after my operation, which will cause a lot of pain. So I need a bed. And the weekend saw a lot of people needing beds. So, instead of sending me home in severe pain, they must keep me in overnight. But they can't. Because there is not one bed free. Anywhere in the hospital.

*Add Lansley and Hunt blame here*

So, my op has been postponed. AND I was first on the list! Sod's Law is working well today. Next thing will be a period. "LOL" at that thought. No, hang on - that's not funny. That is NOT funny.

I'm not angry in the least; frustrated, yes, but whaddya gunna do? A phonecall or letter will tell me when I'm due in. Again...

Thanks so very, very much for the good wishes, love, and kindness. All of it is so appreciated by all of us here.

Time for tea, stamps, Rosie cuddles, and very probably a sleep on the sofa. STAMPS AHOY, SAILOR!

Monday, Bloody Monday.

It's the finality of it all. The totally unquestionable end. It's the wholly different way of thinking, planning, living. Living. Living day-to-day without the fear of it coming back all too soon. The knowledge that it will not be coming back; it won't be "just" six months off, give or take other highly restrictive pains.

I don't have any love to give endometriosis, and I shan't miss my periods one tiny, weeny, neutrino-sized bit. The drastic change seems to be the thing I most think about: my being unable to have children despite not wanting any, anyway; the potential of being able to continue my Artwork without being forced to account for delays or spending weeks away from it; cancelling appointments at hospitals or dates with friends.

Essentially, having wants and being able to achieve them. Simple wants. Regular desires. Seeing friends, walking alone in the town shops, driving, travelling on buses and trains. Independence! Decades of hoping for it. Striving.

I'm trying not to be optimistic about possible results, while trying not to be too negative; I'm aiming for realism. I think I'm about there. I think.

A vision of me reborn, leaping and smiling, twirling in my flouncy new red dress like someone in a Special K ad ought not be imagined. By anyone. I perhaps have the hair for it but that's all.
Pain, I fully expect, will stay but at a (hopefully) lesser degree than currently. I expect, also, to keep this wretched fatigue, and all who sail in it. If my pains do decrease in severity, I hope, very much, that I shall be able to begin lowering the doses of morphine, with a view to eventually end up taking my old pal codeine, again.

But, first, I should concentrate on the operation which could change my life from the stressy bollocks it is now to something a bit less bollocky.

There's no bravery. There's no pity. There's nothing to be sorry about. Shit happens, and it just happened to hit my fan so hard it broke. So it has to go, along with old gurgly git here, The Right Ovary.

It's the undoubtedly emotional upheaval of it all which I keep coming back to. Even though this is my decision, it doesn't make these past few days any less difficult to get through, nevermind the day of the operation and the days after.
And, even if I did want motherhood in my future, could I put myself through this debilitation and the sickening terror of my periods for another five years, for example? I don't believe I could. I truly, honestly don't.

Science: sort it the fuck out. PLEASE.

The operation happens on this coming Monday, 29th July.

The Future.

I didn't take enough tissue. As usual. The leaking of my Doctor Who water bottle was not helpful to my tissue situation. I knew I would cry. I typically do at those kind of  appointments, those gynaecologist chats, those highly emotional discussions with my consultant about my life and potential problems and treatments.

I have tried every kind of treatment offered and explained and favoured.
I have felt terrible with various side effects.
I have been at a total loss as to what to do, in a quicksand of panic to stop the pain.

Since before my teen years began, all of that has not been right. There has always been something wrong. For at least five years, and at most of those tearful hospital appointments, I have complained about the incessantly dull but intense aches and shocking sharps that occur in my lower right abdomen. After both previous laparoscopies, in which my messy and cystic right ovary was "cleaned up", those pains (unsurprisingly) eased enough for me not to be halted mid-speech or mid-breath. They returned, as I expected, but the temporary relief was a kind of magic.

This last appointment had its own mention of the problematic egg sack. So, although somewhat reluctantly, it seems my consultant has agreed that it JUST MIGHT be causing those aforementioned pains and, as such, that right ovary is due to be removed in what will be my third laparoscopy.

My endometrium will be treated to a zapping, courtesy of Nova Sure, and my left tube will be clipped.

I shall undergo a laparoscopic oophorectomy, laparoscopic sterilisation, and endometrial ablation. I shall have one ovary remaining. I shall be infertile. I shall be sterile. No baby shall emerge from my nether parts. I shall have no more periods.

Let me repeat that bit, chaps: no more periods. NO MORE PERIODS. NO MORE PERIODS. Using words, I simply can not convey my joy to you.

I don't want to have this surgery. I don't want to have these kinds of procedures done. The truth, though, is that I, like so very many more girls and woman, don't have the luxury of a thing like choice. Of course I've thought this through; I have thought of little else for the past few years of my life. How to stop the pain? How to stop the periods? How to prevent the shaking and sweating, the incoherence and immobility, the disabling and sickening burning inside, the nausea, insomnia, migraines, anger, helpless tears, and countless unfulfilled dreams - all because of periods, because of endometriosis.

As I type, that right bloody ovary is causing those aches. The ovulationesque pains. The pains not supposed to happen while the ovaries are "asleep" during the menopause-causing injections. I've been having other premenstual pains and symptoms, too. Which has been jolly spiffing. Jolly.

What if I have another mental breakdown about what I'll have done? What if I regret it all? What if what if what if etc. and so on. It's all so fucking hard to live and it never seems to get any fucking easier. WHEN will an all-round, actual, definite cure be discovered? WHEN? It must happen. It MUST.

In preparation for my forthcoming operation, I've already bought two pairs of comfortable trousers and big old lady knickers for my inevitable swellings - elasticated waistbands are a definite NO. I have many a suitably-sized cushion to put over my bloated belly and under the seatbelt for the journey home, slip on shoes, blanket, mints, a non-leaky bottle for water, puzzle books...

Now I know something useful is going to happen, albeit not yet when, I want it done. I just want it done, and over with, out, finished. I can't wait to see if I change my mind about treatment or children. I have to do what's right - or as right as it can be - for how I feel now. I can't keep waiting and hoping. I can't. I won't.

I expect pain to continue long after I've healed. I think it would be naïve of me to expect any kind of "cure". But how I live, how my days are spent, they have to be better than this. It all has to be. And when I have momentary doubts about it all, I remember the periods, the suicidal depression, the sallow-skinned shaking, the unspeakable terror of that internal pain. And then I feel sure, once again, I am doing the right thing.

The End.

Tomorrow, my consultant is probably going to say he'll refer me to his friend and apparently highly-regarded colleague in London. I shall insist I am against it.

I'm as certain as I can be after Sunday's devastating sobfest that I want no more "treatments", I want no more "to see how it goes" or, "to see if there's some improvement". All the years I asked for help, all the people who let me down, all that time I've lost waiting for a possible reduction in pain, suffering through days and nights of unspeakable agony from periods, waiting for appointments, waiting for the artificial hormones to leave... I have had enough.

And here's a thing: the dihydrocodeine doesn't work enough now so I've been prescribed morphine. And this is when I "shouldn't" be having any pain. "Shouldn't" as per The Law of Endometriosis, i.e. "sod the rules; let's go against logic". Previous posts, if you don't know about the menopause injections, explain all that.

To think of all the places I could have gone, the festivals, the museums, the galleries, the friends in those beautiful foreign lands and in counties so close.
To remember the times I said I'd be somewhere but wasn't, the tickets I bought and couldn't use, the calls and texts and emails to let people know I had to let them down, again.

Because of a period, whether waiting for or having one. Because of the "mid-month" fatigue and bleeding and pain. Because of not knowing how I would be and not being able to afford risking wasting the money.

Because of endometriosis. ALL because of that.

I have never wanted to be a mother. As a child, I used to play with dolls and pretend to be a Mummy and pretend the dolls were babies and such. And I assumed the longing for my own baby would arrive. It hasn't. Mostly, children irritate me. Friends' children are really incredibly cute and sweet. Polite. But others? No. I really don't have the urge to reproduce. I don't ever see it happening.

Cats? HOLYMOLY. I LOVE MY CATS. Kitten paws? Cat squeaks? Purring? WHISKERS?? Adorable. I do girly squee stuff and say, "Awww!!" a helluvalot at those gorgeous fluffy lovely gorgeous cheeky monkeys. Cheekychops. I love my Rosie more than words could ever say. Ever.
I love to feed the birds. Love to.  Woodpigeons, house sparrows, starlings, blue tits, great tits, fieldfares, blackbirds - GIMME. I clean their feeding apparatus, complete with many splats of their pungent guano (brilliantly poetic word for "bird shit") with a grimace but pride, because I know I'm helping them, helping the cheeky starlings and house sparrows survive. The comic antics of the stunningly-coloured woodpigeons are total entertainment, at which I do actual LOLZes. Truly.

Babies? Human babies? No. Not mine.

I can not risk my sanity any more than it has been risked already. My mind and body can not survive any longer in this permanent state of flux. On and off for the last 4 to 6 weeks I have wanted to end it all. Make it stop. Stop the hurt. Stop the tears. Stop the tortuous mire inside me, physical and emotional.

I am not unbreakable.

I am not stoic.

I am human and I bleed and I hurt more than is reasonable, and I can not stand it.

Endometriosis has beaten my medical team, and it will not let go of its grip on my emotions, my body, my entire fucking life. I have been ruled by my reproductive system since I was 12, at least since then.

I am adamant that I want at least both ovaries and fallopian tubes out. The quite exotic term for that surgery is "bilateral salpingo-oophorectomy", or BSO. Or BullShit Ovaries. Or Bye, Sod Off.
I have thought of little else for weeks, I know it's a drastic and HUGE decision, and I know it's not without risks but, as I've tried everything else that could be offered, what else is there?

Really, what else is there to be done?

Chronic.

I don't know who I am anymore. I don't know how to stop feeling so dark and bitter and disappointed. These injections were meant to stop periods and help my emotional state. Periods have stopped but my mind isn't in a good way. And the pains haven't gone; they still do well at fucking up my plans and days.

Endometriosis still hurts, even when I'm having what is termed a "medical menopause". Will the pains be like this if I have the whole useless lot taken out? There might be no point in having it done.
What if the jabs aren't strong enough?
What if I can't have any other surgery to remove any cysts or implants?

Is it temporary, feeling so hideously heartless and soulless and literally carefree? I don't know. The combination of the same injections, and the same HRT, and my "good" anti-depressants isn't as good as I hoped.

I don't know if a life with no periods - the heavenly lack of period pain and messy blood and heavy-limbed exhaustion - is worth living if I feel this way for the foreseeable future. I don't know what to do.

I don't care like I used to, about people or animals or world events.

I don't have compassion like I used to.

I'm not in the least bit grateful for advice about what might help me, least of all when offered by someone with shit all knowledge of endometriosis and/or depression, and the illogical nature of each. And they wonder why I react in snappy or moody ways. "HORMONES??", I may say, sarcastically and with a look which could turn water to sulphuric acid. "There's no need to be like that", they may say. And then I imagine clumping them in the side of the head and saying, "I CAN'T. FUCKING. HELP. IT.", before summoning the determination to just... walk... away...

Cabin fever is also not helpful. I need to get away. Nowhere to get to. Can't even fucking walk properly some days, and my forgetfulness is getting worse every day.

I don't feel as affected as others clearly think I ought to, who then judge me for being so cold.

I don't think before I speak and, if I've proverbially brought someone down a proverbial peg or two, I feel disgracefully pleased that I did. I despise what I've become and don't know how to return to feeling the way I did.

I don't care that I've taken too many painkillers and that it might cause damage.

I don't care that my hot water bottle is too hot, or that my skin itches with rage, or that I have permanent burns.

I don't care when I seethe with unreasonable anger and disdain at what seems to my fucking annoyingly-depressed mind to be others' utter stupidity and/or incompetence, that they feel so negatively affected by my (re)actions.

I don't know how much longer I can cope. I don't know what to do.

I don't cry like I did when I might expect it to happen now. Even when I do cry, it feels forced, like it's simply not real.

I don't laugh like I did.

I don't love like I should.

Endometriosis > endometriosis treatment > depression > medication > no endometriosis treatment > endometriosis > endometriosis pain > depression > endometriosis treatment > depression > and so it goes.

I'm not asking for advice or fishing for kindness. I'm not expecting anything; I'm simply telling you a simple version of what I think is going on in my head.
None of it is simple to experience, and none of it is simple to manage.

I don't know what to do. I don't know how to carry on like this.

Help.

I can not do a vast number of household chores in one day or even a week because of my stupid health problems. I do what I can when I can, and I never feel it is enough. There is always something to do and I am not always able to it. Some days, I feel I can do a lot more than others; the "other" days might involve me laying on the sofa unable to move. I never know. It's like Ovarian Bingo.

This is a very personal insight to how I see things in my home. My parents both have their own health problems - Mum's cancer bother and treatment, and Dad's agonising arthritic hip and back, for just a start. I don't happen to think doing all you are able to help the people who have done, and continue to do, e-v-e-r-y-t-h-i-n-g they can for you is unreasonable. But what do I know?

NaPoWriMo 2013 - day 28, part bjtvggshb... I don't know...

Before we had a dishwasher,
I washed up the cups and pans,
And the plates and cutlery,
Monotonously cleaning by hand
Your crumbs and coffee stains,
The grease and the grime,
From your unhealthy foodstuffs,
Not my chosen way to spend my time.

I'm often hunched over the worktops,
Such heavy aches in my back,
But you never bother to ask how I am,
Lest you think about others - imagine that!
You see me stop in the kitchen,
Frozen, breathing heavily through my pain,
And, instead of filling my hot water bottle for me,
You simply sigh and complain
Because I'm in the way of the kettle
And you can't make your coffee
Or I'm selfish about the water
Because I'd filled it up for me.
I hoped the heat may help me relax
After walking up, then down, the stairs,
To fetch another load of washing
Before taking tablets to ease these pains I can't bear.

You most often see me sitting down,
So you seem to assume it's all I do,
But never seem to consider Mum's not alone in
Keeping the home free from the smell of cat poo
Or dirty floors, or limescale-free taps
So I must only ever eat codeine and sleep,
Despite every day SEEING me do housework,
The fatigue in me runs so painfully deep.

The clothes in the ironing pile,
Some more wrinkled than others,
But all must be pressed, and, invariably, it is I
Who stands for hours because you never bother
To offer to iron even only your own clothes
Because it "doesn't matter" if they are not done,
But if I don't do it, the only other person who can
Is the one who suffers enough already - our Mum.

Cleaning has to be done,
Things must always be cleaned,
Including windows and sinks,
Something you still don't seem to glean.
Cleaning your car does not count,
Huffing and puffing never occur
When the buckets and sponges make their appearances,
Why do you so rarely think of Mum? Think of HER.

The recyclable card and plastics
Must be washed and sorted.
They don't magically clean themselves
Have you never had a moment when you thought if
You did that something or other,
Which always seems hard work
You might save your mother some stress,
Rather than just walk on by? It is the behaviour of a berk.
After I've dusted the surfaces
And vacuumed the carpets,
I feel so achy and heavy,
And I've only just started!

Why must you wait to be asked
Before lending your reluctant hand?
Why will you not just offer to help?
Grow the fuck up and be a better man.