Housekeeping

Well, this is exciting. What an adventurous two days I've had! Yesterday, I took a fair number of photos of some plants and flowers in the garden, threw more seedy food on the garage roof for the birds (and possibly some cats, the weirdos) and... I did some ironing! Fourteen tops! I know! It's a rare thing these days, dear reader. It's a sad but true truth, so it is. This moral boost, such as it is, has been a good thing, and all the more fulfilling because, for me, it's not a frequent thing. Yesterday and today have made me feel good. And then not so good today. Today I am Miss Grumpy Socks.

Frustratingly, I forget my limits and attempt to do more than I can realistically achieve. Inevitably, I fall short of my targets, and then feel as if I've failed. Woe is me and so on. That's probably a depression thing, the not feeling good enough or like my efforts are worth anything. Gladly - just call me Pollyanna - that doesn't happen often, either, which I owe to Citalopram for keeping me mostly level and "OK". And quite groggy. What with the endometriosis, polycystic ovaries and depression, it's a wonder I'm not permanently on the floor every day inspecting carpets while weeping more than the quantum-locked angels.

This year is practically full of events I may not be able to attend because of said endometriosis, fatigue and general painful mess it provides. A gorgeous friend of mine is inviting friends to eat cakes and drink tea to raise money for charity. I would like to go, but I think it may not be possible because... Well, you can probably guess the rest of that sentence. And I've been invited to The North for a thing to do with endometriosis. Again, despite wanting very much to go, I'm not sure I'll be able. The concern of all this possibly-letting-down-people is hidden at the back of my head, like a forgotten tin of soup I really meant to have one day, a while ago, but never found the right time to have. Then I find it. Again. And it's more dusty and more troublesome than the last time I saw it but now I can't ignore it and I have to face it and deal with it. I have to get that can opener. Or the can't opener, as I sometimes prefer it to be.

Ignoring the worries and chores is so easy. Of course, sorting them out like letters in to a folder or filing cabinet is not fun, particularly, but it's like housekeeping - it has to be done to maintain order and a sense of health about the place.

"I'll do it later."
"The letter? Oh, it's in the drawer... somewhere. Oh, it's fallen down the back? Oh. Shame..."
"No, it's all right - I'll do that, and I absolutely will not throw it in the box marked 'Do it later. Probably.' Probably."

One of the things I've put off for a long time is sorting photos on my laptop. Because I have a lot of photos on my laptop. I've had to unload hundreds of photos and files and megabytes from my computer to the tiny but massive hard-drive to make room for yet more photos of cats and insects and clouds in the same poses, on the same leaves, and in almost the same formations, respectively. It's taken me hours already today to file and sort and move and copy and save photos and films, then make sure they're all in the right place. All that while having to remember to make tea!


Today was so warm and sunny, it was gleeful, and I sat outside while I drank my first cup of tea of the day. With my camera and RSPB book, I sat there and all I could hear was birdsong. It was a veritable orchestra of blackbirds, blue tits, skylarks, jackdaws, crows, woodpigeons, collared doves, goldfinches, greenfinches! It. was. b-e-a-u-t-i-f-u-l. Even hours later, in the afternoon as I sat by the window, I could see and hear sparrows chirping away, deep in conversation, unaware of a human sitting so close to them, enchanted by their charm. It's just lovely.

Wearing my chunky-knit cardigan and Dennis the Menace-esque top, I absorbed the delicious warmth and spied on a wasp hovering around the euphorbia. My heart almost skipped a beat when one of my favourite birds, a goldfinch, landed in our biggest tree. Red metallic feathers on its head glistened in the Sun's brilliant light, and yellow flashes on its wings shone as bright as our biggest star. The pretty bird didn't stay longer than 20 seconds but it arrived, and delighted me, and delights me still, hours after it happened. More photos to upload, edit, file, sort, move.

The Sun's heat and rays do seem to affect many people in a positive way. Snow is magical, for me, but I do adore being able to leave the house without a coat or a jacket. And Summer always seems to be the season full of weddings. As I closed my eyes and listened and smiled, I thought of more events this year. I've been invited to three weddings and/or receptions, which thrills me beyond reason, and not just because I can wear pretty dresses, hopefully some heels, and look like a proper girl instead of being made of comfortable trousers and a bobbled cardigan in its four-thousandth year of existence. It means some of my most lovely, kind, beautiful friends are getting married. And that fills me with joy and happy nearly-tears each time I think of them all.

There's also been a thing I've been doing, which I can't share with you yet, but I shall, when it's done. It's taken a fair bit of my time to do, lots of concentration and quiet thinking, and has been an incredibly enjoyable challenge. And a bit of an ego boost. Hoorah for that, what? And, as if that nice boost were not enough - and it is - I've discovered I'm permitted to to some work, if I feel able, and earn up to £95 per week while on ESA. It's a boon! As with the decision to pay me the benefits a few years ago and now, this being permitted to work doesn't mean I can, and it doesn't mean I'll suddenly be applying to work in an office or in a shop or any place, actually. It means I can try to do stuff like I used to and maybe feel better in myself, at least until the next period of... well, period. I haven't drawn anything for so long that I can not remember the last time I did. Photography with my handy digital camera is easy. It's so easy it's almost obscene. But then, I always want to edit them, sharpen the image, throw out those that don't meet my standards, file them, move them, sort them, and then there's more to do when I'm too bloody tired, dammit!

I've mentioned before, a while ago, how I miss drawing and painting. I'm scared I mightn't be any good any more. The way to find out is to try, I know that. I've sort of hidden all my pads of paper, the paints, the brushes, the pencils, the pens. And I feel guilty. In order to do those things, I have to spend time not trying to help around the house. That means more for others to do. And that's not fair. However, I don't do that much anyway, precisely because of how I feel, and that's the thing which stops me getting all Arty Farty again. Hello Circle, you vicious git.

It's hard to feel like you're making progress when things don't seem to change. Am I making progress? Am I changing? I don't know. I want to. Some things simply can't change, like the pain, and I know that. I know, too, that the need for pain relief won't change, either, nor will the feelings of fatigue and insomnia and ohhh, shut up about it all. I need a cup of tea. And a sketchbook...



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Floodway Thursday

The postwoman deposited our mail through our letterbox, which clunked shut with satisfying certainty. While I lay in a daze on the sofa, my Dad placed in my hands the brown envelope containing the letter for which I had been waiting and dreading in equal measure. By that point in the day, the usual devastating inner

woe had eased enough for me to release my coarsely knitted brow and cease shaking all over. The Keral had alleviated the inflammation, and the dihydrocodeine had blocked the pain signals with its tiny but rather effective barriers and signs saying, "NO ENTRY, MUTHAS!".

Several times that bright and beautiful morning, I had sunk to the floor with less grace than a rejected Roly Poly chasing cheese down a hill made of custard. First to the toilet floor, then that of the kitchen, then of the living room. My legs transformed in to cotton wool and my breathing became erratic and laboured. I felt weaker with every second that passed, and fainting emerged as the most welcome prospect, for it would mean I would be unconscious, unaware of the pain, if only for a few minutes. But, it was not to be - I would remain very much awake for the rest of the morning through the worst of it. Bloody typical. The severity of my "normal" period pain never fails to stun me. It's not just period pain, though, of course; it's endometriosis pain plus period pain, with bowel/IBS pain from dihydrocodeine and Lactulose.

Once more, my angelic Mum was my saviour and, once more, she hurt her back, hip, and shoulder taking my entire weight as we shuffled steadily from the kitchen and along the hall to the living room. As fast as I could - and it was slow by many others' standards - I swallowed the Omeprazole and Keral and willed the latter to work. It did, but only after about 40 minutes. Mum had to leave me to sort my hot water bottle, but I didn't want to be alone. At that very moment, my brother passed by the door and I beckoned him in with a form of sign language. He held my hand for a few minutes until Mum returned with my trusty, well-used, and purply soft hot water bottle.

"I'm sorry... I can't... give you... a grand... child... at the end... of all... this...", I said between gasping at the sudden kicks in the abdomen by the Invisible Hulk in a really bad mood after his mother told him to tidy his room instead of going out fighting. I hadn't dressed since Tuesday, nor been able to wash properly since then. My pyjamas and dressing gown were like second and third skins, respectively. To walk the meandering 11 metres to the downstairs toilet, I needed to use one of my walking sticks to provide the support and balance I lacked, thanks completely, as ever, to the endometriosis.


The Mankoski Pain Scale was created by Andrea Mankoski as a way of explaining how endometriosis interfered with her life. I discovered it only last week. Inevitably - in my head, at least - the worst pain during those worst times, my periods score an unhealthy and rather sinister 9. As I said earlier, passing out doesn't happen. Sadly. I can not recall the last time I scored a 0, 1, 2, or even 3 on that scale. Most days - excluding periods - I score between 5 and 7.

I've often remarked - in real, actual life, if not on here - that endometriosis makes my periods predictably unpredictable, to paraphrase Noel Gallagher when speaking of his brother, Liam. Therefore, the simplest and best-laid plans are made in to a big mess of cancellations, apologies and let downs. And guilt. On Tuesday, I was due at the hospital to see the doctor heading my pain management treatment. Ironically, I was, as you may have guessed, ill with a period! Surprise! Oh, endo, you old rascal, you. The exhaustion it causes would have been twice as bad if I'd've gone and then, consequently, recovering from that extra ughness would've meant I'd've been iller for longer, which really must not happen if it can be helped.

"I don't think I can read this", I said as I looked at the brown envelope, with DWP printed on the back, in my hands. I waited a few seconds, contemplating whether I ought to hand it to Mum, instead. I messily ripped open the envelope, and read the first line of text below my name on the first of 5 pages. Printed in bold were the words, "Your benefit is changing to Employment and Support Allowance". I sighed and smiled. "Oh, thank-you!", I said to no-one in particular, "They believed me." Time had dragged on horribly slowly since my assessment appointment a little over 2 weeks before. They had now informed me that I "have been placed in the support group because (my) illness or disability restricts the possibility of working". It almost makes up for those frustration-filled and humiliating years of being ignored and scoffed at because I only had "bad periods".

My receiving the ESA doesn't mean I'll be magically well, that the pain will simply disappear, or that I'll be the socialite I've never wanted to be. It doesn't mean I'll be out and about, spending the money on clothes, DVDs, home furnishings, an enormous HD telly, holidays, expensive jewellery. It means I can guiltlessly buy sanitary towels the size of a mattress and bed protectors to protect my knackered knickers and bed sheets from a bloody mess. They're not the price of gold but they're not as cheap as they might be, especially when you have to stock up every few weeks.

It means I can pick up my ludicrous number of prescription medicines without worrying about how much it will all cost. As I don't rent or pay for a property, I give a chunk of the money I receive to my parents as a kind of rent or housekeeping because, after all, I need to eat and be heated and I use electricity. I'm not a or the bill payer - I'm a Lucy. Ha! - and I need to live, so, obviously, I cost money as a person who, y'know, lives. Money to my parents is the right thing to do, I feel.

I'm sure some people wholeheartedly, absolutely disagree with the DWP's decision to pay me that money. There is almost unequivocal surety that those who disagree believe I am not as ill as I say I am, that my pain and periods are easy to fix, and that I really should make more of an effort. I know what is true, my GP knows what is true, my award-winning consultant know what is true, and my pain specialists know what is true. And, now, the DWP does, too.
I am a person. I am an adult. I am not able to work and, as such, am "entitled" to a kind of "living", as I am unable to provide it for myself. That's what I was told upon my first visit to the Job Centre a few years ago so, if you have issues with any of the "morality" relating to that, talk to them rather than bombard me with dire attempts at bullying behind the façade of a cyber-profile and taking the righteous role and telling me all about those hard-working, decent people and the "real" deserving people.

After I wrote "The benefits of being a bloody burden" and Sunny published a cut-down version on Liberal Conspiracy, a particularly unempathetic, right-wing Daily Mail reading know-all replied. No.5 - for the person was the 5th person to comment on the piece - made up quotes from me in the post, one of them being that I had stated I wanted (sic) "everyone else to pay for (my) lifestyle", what with me being on benefits because of a pesky little disabling health condition which can not be cured.

Bloody scrounger, obviously. Clearly, I do not want others to pay for me. I replied to No.5 with facts and information. There may have been some kindness among the later comments but I read no more of them, as I didn't want to waste my time on any other people who seem to feel a desperate need to denigrate others for being something they don't like. It may come as a shock to some people, but I don't bloody like it, either. People like that do exist and they do upset and affect other people whose wills and confidence are not as strong as they might be.

I have typed a little about that horrid kind of person. However, I do not give 2 hoots of an owl's tit what the unbelievers think. I know the truth, and that is all that's important.


I thought, by this age of 30 years, I'd be living in my own house or flat with my husband and a child or two, a nice garden, a cat, a reclaimed table and chairs that don't match... Instead, on that Thursday of brightness and sunshine, blue sky and birdsong, I was composing this blog post while lying on the sofa in the living room with my grey blanket over my legs, a heat pad on my back, the obligatory hot water bottle on my belly, and 6 cushions propping me up.

That Thursday was a HELL of a day. Day 4 of a period is usually the day it all starts to get ever so slightly better. This time, however, it was the day it got worse. Much, much worse. It wasn't the day it eased, but became the day I had to be carried because I could not stand. It was the day of primal howling amidst increasing misery. It was the day I gained a kind of redemption even though I have done nothing wrong. (Well, not relating to my endometriosis, anyway.) It was the day I was reminded, once more, how much help I need to merely get through each day, let alone the very worst times.

The same sort of thing happens every time: when the pains lessens - which, for me, it thankfully it does mostly with painkillers and anti-inflammatories - a gentle cloud of misty exhaustion and shock descends upon me. I stare at nothing. My breathing settles to a more normal pattern. My tense muscles relax and soften and I'm able, at last, to lean my head back to rest on the cushions behind me, which dutifully keep me supported. My shoulders eventually drop away from hugging my ears. Then, at last, I sleep. Sometimes for half an hour, other times for about 3 hours.

It's a carousel of the same, old, horrible, ugly truth and it's not only my life; it's the truth of millions of women and girls. It will happen yet to millions more yet to start their periods. All across the world, little girls, toddlers, babies will be hurting - some of them will live this life and be ignored, and told nothing is wrong, and be mistreated. Endometriosis isn't about class, colour, race, religion, country, or strength of character. Endometriosis is everywhere.









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Too much.

This isn't even a proper post, not really.
Bed. Phone.

I'm trying to continue reading the book I began a couple of weeks ago. Or was it more than that? I can't think straight.
I can't sleep from nausea, gurgling innards, and the echoes of mild pains through the flimsy shields of pain relieving medication. My eyes are heavy, my body aching, my womb throbbing with the ceaseless threat of what is yet to happen to me.

Tuesday was tolerable. I did not collapse. I did not think an ambulance would be needed. I did not need my Mum to stay with me at all times. Tomorrow will be different. Wednesday will be wicked. It will be familiarly cruel, frightening, paralysing.

Today I took 22 tablets - all but 2 were for pain relief.

My eyelids are heavy. I'm being charmed by the wonderful simplicity of the delicate sparkle of silvery stitch detail on the roses on my duvet cover...



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Invisible snow

The events of Sunday 5th February 2012.


An ethereal glow of whiteness found its way through the slim gap at the top of the bedroom curtains, which had not closed fully the night before for hope that the light would gently wake her. As she remembered that snow had begun to fall the previous evening, which excited her as ever it does, she knew that day she would be restricted, unable to feed the birds, build a miniature snowman or snowcat, take macro photographs of the snow crystals and frozen plants. Sleep had been annoyingly truncated, not helped by the not-unusual company - invariably on her legs or feet - of Pieman, one of her cats. The night-times with Pieman are occasionally a love/oh-get-off-my-back-I-can't-breathe affair. She could, very easily, shut the bedroom door to prevent him joining he but he and she would be all alone for the night and, besides, she enjoys his company.

Between doses of dihydrocodeine and dozes from it on Saturday evening, she had caught sight of what have been a blizzard without its full share of might. The flakes were small but the depth grew at a satisfying rate. The grooves in the corrugated roofs disappeared, the hard lines of the kerbs softened, the foxes taking cover in their dens. Weather forecasters had informed the nation that there would be a significant amount of snow to wake up to on that Sunday morning. And they were precise in their skill of reading clouds and atmospheric conditions, which continues to intrigue her. She would, she was sure, like to learn it all one day. One day. At least five inches of the white wonder stuff fell during Saturday evening, through the night and early the following morning. She was awoken by the distressingly familiar dragging heaviness that was period pain caused by endometriosis. As is usual when the inner fury arrives in its fiercest manner, she awoke before her alarm sounded. Before the pain violently strangled her insides fully, she was able to wrench herself out of bed and to the window where she looked out and gazed at the marvellous view before her. The fluffy surface of the snow was untouched but for footprints made by early rising foxes prowling through the front garden.

She could feel the cool air from the window and the walls and soon shivered, before she hurriedly pulled her dressing gown around her bare shoulders. She struggled to cover her feet with the thick socks she had placed within easy reach the night before, followed by her sparkly slippers, which she then awkwardly and slowly fitted on her feet. She had learned, through immeasurable agonies, that so much of what's important about knowing the effects of one's imminent and routine illness is the simple act of planning. It's about ensuring the appropriate rituals are ready to be carried out: cushions and blankets arranged and in position; heat pad plugged in and placed on the cushions; hot water bottle by the kettle; tablets placed on the table by the sofa-made-bed; walking stick by the sofa-made-bed.

Somehow, as always, she clumsily hobbled down the stairs without falling face-first in to the front door. Stumbling, still frowning deeply, and by now breathing like she was in labour, she narrowly and apparently miraculously avoided spilling boiling water over her hands wile filling her hot water bottle. With her drink poured and her hot water bottle tied to her belly with the belt of her dressing gown, she staggered, in typical her-style, in a superbly ungainly fashion along the hall and leaned on the wall and sideboard to support her increasingly weak and shaky body. She became, in seconds, heavy and at any moment would be sure to sink to the floor, helpless to defend herself against the furious fire within her if she didn't make it to the sofa. The sight of the sofa is always a welcome one, as it always is at those times and, as she arrived at her temporary day-bed, she turned on the heat pad which she had left against the cushions the night before, when she had first felt the intense pains begin. All the while, the curious other-worldy radiance from outside lit the house with wondrous luminosity but it all meant nothing to her, the girl who could live a month in snow for the silly reason of thinking it impossibly pretty.

The first task - after making it so heroically downstairs - was to take an antacid capsule, Omeprazole, to prevent her stomach bleeding as a result of the interaction between the anti-depressant, Citalopram, and the yet-to-be-swallowed anti-inflammatory, dexketoprofen (as known as Keral). The second task is the worst: the waiting. She could feel her insides burning and tearing, and she was unable to take any kind of pain relief for thirty minutes. The antacid must be given that time to work but in that time, the endometriosis is doing its own work and she could feel it. Swollen, searing, stabbing. She was altogether helpless, and desperately needed someone to help her. But she could not speak. She could barely breathe or move her eyes, and she fell inelegantly on to the sofa with the cushions she had arranged the night before this frightening morning. Seconds stretched themselves so that minutes became hours, the monotonous tick tock of the mantle clock slowed down, and she was frozen by the fear of what her own body and what it was doing. She was involuntarily silenced by her own self and there as not a thing she could do to change it.

At last! At last. Those tortuous thirty minutes had passed. At last. Now, she could take the anti-inflammatory, dexketoprofen. Now the pain relief can begin. But that only helps so much. And now another wretched thirty minutes were ahead of her before she could take the once-powerful dihydrocodeine. The anti-inflammatory swallowed, she resumed her awkward slumped position on the sofa unable to move her hot water bottle, which was by now burning the skin on her stomach causing it to glow an unhealthy red - she hadn't arranged her pyjama trousers and dressing gown adequately to prevent yet another reoccurrence of the scorching. Her skin was raw and itchy and needed to be relieved of the intense heat but she couldn't move. The pain continued to engulf her in waves of familiar terror, and the fleeting moments of respite she had were spent trying to breathe more normally, while recovering from the inner rage which enveloped her whole being with overbearing cruelty. Just like before, the time slowed to an unbearable pace and the lock louder than was acceptable. The cats wondered what on Earth she was doing, again, why she was groaning, why she stared through them, willing the dexketoprofen to hurry up and magic the pains away. Magic, of course, does not exist. The second round of silently celebrating the passing of the minutes was short-lived, as she fumbled to break the pesky blister packs to release the painkillers. Knowing these were her wonder drugs, she hastily consumed them, then ate two biscuits she had to eat because when taking them, eating is what's required of dihydrocodeine.

The hot water bottle still burned the light from outside was still eerily bright for so early in the morning, and nausea had its ever-unwelcome return. Her dishevelled hair had fallen over her face, and she peered through the blurry gaps to gaze out of the window from her sofa-bed. She could see plants heavy with ice crystals, cars unrecognisable under the smooth white drifts, and heard not one voice. Silence everywhere.

By half past ten, she had been awake for a little over two hours, but it had felt as though she had been awake all night without rest. Her mother had made her a cup of tea and, being in a semi-conscious and almost totally dependent state from the pain and medication, had to take almost all of her daughter's weight to help her sit up enough to drink. She ached deeply all over, and the wretched pain within had been dulled significantly but not completely. She still winced and flinched in response to the sudden and needle sharp pains - dihydrocodeine is good but not that good.

When, after another hour, she needed to get to the toilet, her mother again wrapped her arms around her daughter and helped her to her feet, slowly and gently. With her walking stick, she made her way to the brilliantly placed downstairs toilet when she was waylaid by the sight she beheld through the kitchen window: a breath-taking vision of clean, pristine snow and a chaffinch and sparrow in the tree in the garden. Shortly after retaking her familiar place on the sofa, the usual Sunday smells permeated the house. Roast chicken, potatoes, vegetables cooking beautifully in the nearby kitchen. The small window in the kitchen was open to clear the air. From the smell of one bird to the sounds of another: the resident robin sung mellifluously, its metallic melody breaking the stillness outside. He and his two feathered friends were hungry, as the seed feeder and suet balls had been frozen, and she felt so guilty at being unable to get outside to help them. Her poor birds! So cold and so in need of food, which she knew would be available elsewhere but she didn't want to let them down. They were sitting in her garden and been left without food.

All too soon, the pains returned and the need to take the dihydrocodeine had arrived again. Once more, she groaned and became immobile, and once more she feared her body and the agonies it was providing. More tablets, more biscuits, more sleeping on the sofa with the cushions, hot water bottle, heat pad and blanket. The day dragged on and on, the minutes again became hours of miserable attempts to rest and not tense up all over with the apparent punches in the gut. That Sunday night was made of broken hours and exhaustion, and the next day was the same as the previous one.


And so it goes. This "story" is what will happen in about a week's time, albeit without the snow. The days between periods are less horrendous but still painful. Not everything can be fixed, not every pain and twinge and niggle can be mended by a tablet or some positive words or people thinking you're OK because you look "OK". This is my truth. And it devastates me every time. It causes depression, insomnia, codeine addiction, migraines, and more. And it won't get better. This is what happens to me. Every time. And I dread and loathe what is to come in the next week or so.

The benefits of being a bloody burden.

From my vastly informed experienced, it appears that those of us who are fortunate financially - and are in government - are able to imply that this current wave of austerity affects us all, while knowing it does not and will not affect them.

I have no bitterness about people who are comfortable, financially. I feel anger about pointless and stubborn reluctance to think another way, to accept the possibility that, maybe, what some people see is only what they want to see because the truth is not preferable. It means they might be wrong. Heaven forfend!

What frustrates me? Among other things, is how and why David Cameron, Andrew Lansley and Ian Duncan Smith assume they know what is best for me. Empathy hasn't yet been shown by any of them. They also seem to know what must be done for countless others who can not work because of, frankly, rubbish health - be it temporary, chronic or permanent - or disability. How do they know what I need to do? Have they read my medical files? I haven't. Despite trying to make me feel it, it's not my fault I am unwell. Why do they seem to try to make me feel guilty, punish me, insult me because of my health?

I've noticed some curiously suggestive language being used by Cameron and his crew. That people who are paid benefits “earn” that money. That people who are paid benefits ought to start “paying back society”. That those who pay tax ought to be riled at others being paid benefits. How dare they take money they are entitled to?! It's a shrewd and somewhat cruel effort, by my reckoning, to (attempt to) mildly brainwash and affect people's independent thoughts by continually churning out the same, old patronising “you deserve better” line, while “they” should stop being a burden on you, the hard-working person. Ignorance does, indeed, breed hatred.

Never, more than of late, have I felt so sidelined, so belittled, so very offended by that notion that I should feel guilt at my situation. I don't feel guilty, and no number of derisive words from ignorant people will change that. I did not ask for this to happen to me. I did not want to have to take medication every day to ease the physical pains, the emotional imbalances that affect my days. My mental breakdowns were no single person's fault, nor is my chronic physical pain. I don't blame anyone for what's happened to me; I do, though, blame the medical people for what I see as incompetence, those who were meant to help me but didn't, dismissing my pain as normal or insignificant or psychological, thus delaying the necessary and correct treatment. In turn, this has meant more damage has been done to my insides, which means I need stronger painkillers, and my options of treatments are limited. I've had 2 laparoscopic operations, and have had more pain since the second. This has and will cost the NHS more money, surely, with my constant need for medication.

My problems are endometriosis and depression. The only job I have had is a paper-round, delivering a weekday local newspaper and collecting the money at the end of the week. The round took about 45 minutes on Mondays, Tuesdays and Wednesdays, and about 1 hour and 20 minutes on Thursdays and Fridays. I liked a lot of the customers I delivered to, some became friends, some I could not tolerate, and others were almost never seen. I did well at Christmas: some customers gave me £20, others a couple. Often, my tips totalled up to over £200 at that time of year. None of them had to give me money, but they did so because they were nice, they appreciated my time, my kindness, and my consideration. I'm nice like that. And modest. Obviously.

Crucial to my mentioning this oft-lonely job of mine is that I could not even do that as I should have been able. Periods. Always the periods. Then, as now, they rendered me unable to walk, instead causing me to rely on my Mum to help me get to the toilet, to bring me my tablets, to get me up the stairs to bed, to sit up to eat. She stays with me to hold me while the pain rips me apart, burning me inside with unforgiving and inexorable cruelty. On the average worst 2 days of a period, I'll take about 45 tablets in all. Certainly at least 20 a day, and that only includes the painkillers. I'll have 8 each of 30mg dihydrocodeine and paracetamol, 3 of the anti-inflammatory dexketoprofen, 1 Omeprazole capsule to stop my stomach bleeding in interaction with my anti-depressant, which is a daily 40mg Citalopram tablet, plus, a fair measure of Lactulose to try to counteract all that codeine. A lot of medication, and all (but one tablet) because of endometriosis. It doesn't help the whole big awkwardness that my periods are irregular. So, your guess is as good as mine regarding when they will start.
Today, for instance, is 3 weeks since the last one started, and I was on the kitchen floor with period pain. I am wiped out for the best part of a week.

Most days now, I have to take 2 or 3 doses of the 30/500mg co-codamol because the headaches and pelvic and ovary pains are not tolerable without relief for me. Every dose makes me at least a bit tired and, depending on what my hormones are doing, I may be drowsy to the point at which I fall asleep. I have stiffness in my lower back and knees, and can't stand for a long time or walk for too far a distance without stopping, crouching down to stretch my legs and back. It hurts, basically.

I wake in the mornings feeling sick, and almost always with a headache. I find it hard to concentrate and remember what I have to do around the house, so must write down my goals for the day. When I am able, I load the washing machine and tumble dryer, iron clothes, wash up, load and unload the dishwasher, clean the cats' trays. It's not all go go go. I need to sit down, I need to “rest” between things. I may have a burst of that energy stuff and decide I can manage the trays, the washing, and the kitchen sink and make a cup of tea for Ma and me. Then I'll sit. And stay sitting. And feel tired again.

I don't do even a fifth of what I feel I should at home. I like my good days. I can do things I meant to do before, yesterday, last week, but hadn't felt able. (This is where the spoon theory becomes impossibly useful. If you don’t know it, please read up on it. It explains it all so well.) The mental list of things I want to do is longer than I care to think. It would be longer still, but I keep forgetting to add to it. And where I put it.

Visiting shops and walking about for even a short while can hurt me. I don't go out every day. I don't make a fuss or go on about my pains but I do try to ensure people know it's not fleeting, a day out will mean a lot of rest will be required. Chronic fatigue is not fun. Pain, of one kind or some others, is present all the time. I live it and get through it and suffer and take it because that's what people do. I'm not special, I'm not asking or expecting to be treated with cotton wool gloves, I'm not suggesting I'm wonderful or heroic or brave. Because I'm clearly not. It's not great to be living like this but I know, so well, it could be a hell of a lot worse. Perhaps, if you saw me walking around Sainsbury's or Lidl or buying a newspaper, you may well wonder why I am paid income support. Because, mostly, I look OK. I'm not well. I'm just not.

I don't claim incapacity benefit; I'm not eligible.
I don't claim housing benefit; I'm not eligible.
I don't claim Disability Living Allowance; I'm not eligible.
I don't claim tax credits; I'm not eligible.

I know people who have worse times than I, people who have to live a life knowing they won't get better, people who can not walk, people who can not find anything to help the, feel even slightly improved. I'd never suggest that my endometriosis is the worst in the world, or the worst amongst my friends. Some of those friends work, some have to use every bit of strength to get through days and look after families, some I admire more than my words could ever express. I've "lost" friends because of all this. I don't miss them one bit, thankfully, since they have disclosed their embarrassing ignorance and baseless assumptions without effort to rectify. I really am better without those who think I'm laying it on a bit thick for their liking, or craving attention, or whatever else those buffoons would like to think.

For me, though, working outside of my home is not an option. I worked so hard at college, through periods of hell, depression blackening my soul for days and weeks and month. Anxiety caused me to shake and retch at the thought of getting to and staying at a place which contained so many things I utterly adore – Art materials, books, people. Hormones. Real, genuine, actual problems because of hormones. I want to use my talents as an Artist to earn my OWN money. I don't want people to pay for me, look after me, and be my chaperone. But it is that way and it won't change. It's not negativity; it's realism. I want to sell my work - my drawings, take commissions, and paint garden birds in watercolours. I want to use MY money to buy my own sanitary towels, my own socks, and my own hair grips to replace the others that bent too much to use any more.

Will I be given permission to live my life the best way it can be lived? I'm waiting for the response to the benefits form, which I filled in a few weeks ago. I really don't know what they'll say. Even if I did manage to create some work to sell, it would take a while to do. I'd need to pay for prints of my Hendrix picture, and they're not altogether cheap to have done. But they do look fabulous.

I don't want luxuries, I'm not greedy, I don't want innumerable possessions, I don't want holidays abroad every 6 months; I just want a better life than the one I have. That's not bad, that's not shameful, and it's not snobbery. My life is hard work just to get through days like today. Which decent person doesn't deserve a fulfilled life? Why shouldn't anybody? It's not wrong to want better, if what you have is not good enough, less than decent or reasonable. I've heard so many people state quite clearly they disagree with benefits. But which? If you don't inform well enough, the ignorant people among us will choose an opinion, if they've not already been told what to think, and disregard the possibility that there are, in our amazing country, those who must be helped. "Damn the needy!" Why? Damn the people who don't work!" What, every person who does not work? Those who can not work? The genuinely lazy barks who just can't be bothered? Please, say what you mean and use facts as a basis for it, rather than regurgitate the same, boring, copy-and-pasted spew that doesn't MEAN anything? Please? WHY do you think what you think?

I know some people work exceptionally hard. I know this, because my family has done so for so long. They've suffered. We've suffered. I know what a lack of money is. We were looked after superbly and provided for, but we went without, as children, in order to eat. We never went abroad for holidays. We never went out to restaurants or parties, we had furniture that lasted for years until it fell apart, the carpets until there were bare patches, clothes until they could not be repaired in they would still fit. I don't know poverty, as my grandparents did (and they truly did) but I know what going without means. I am not spoilt, I have realistic expectations of people, and I have no desire to get all I can and damn everyone else. I'm not a scrounger.

My desires relate to health, pain relief, days when I'm free from the fear of pain, my own mind's relapses, whereby I work to my abilities, and within my physical limits. I will not risk my health to be what this unkind government wants me to be. Money does not stop pain hurting. Money in the form of income support doesn't make me happy, it doesn't stop my mind entering the bleak world of the black dog and thunderous skies and odious misery where nothing lights the way, and no-one offers a sign of any chance of a path out of this shithole. Money, which I would earn, would not do the same, either, of course; though, it would be money from my work. That counts for something. It must do.

“Surviving”, as Cameron indelicately puts it, and getting by might be good enough for his way of thinking for others, but it doesn't wash with me. People deserve better. I've survived enough with endometriosis and depression and I will not fall in to the trap of believing my life is my fault.

Sanitary confinement.

Like the big Austrian chap in those robot films, it's back. I knew it would be. It was merely a question of when. Sitting here after anti-inflammatories, dihydrocodeine and paracetamol, I am feeling distinctly befuddled. The period and right ovary pains are not easing enough, which is what I thought might happen. Only two days ago I was at hospital seeing my consultant, who said I looked well. I felt well. Well, not well, but not not well.

Last night, though, everything changed in the time it took me to place 8 plates, 5 cups and a selection of cutlery in the dishwasher. About 4 minutes 39 seconds. Ish. Sudden, tight, pinching, stitch-like burning in my right side, from the usual right ovary area up to my ribs. I've only had a pain like that once before in 2003 when I was admitted to hospital with a suspected appendicitis. After a horrible night of no sleep opposite a sweet old woman who couldn't stop being sick, I was told it wasn't appendix related. They didn't know what it was, they said. Not helpful to me, really. My belief is that it was a cyst or some kind of... über-rupture. Something. I don't know, obviously, but from my first knowledge of endometriosis, it seemed obvious to me it was endometriosis-related.

So, there I stood, awkwardly, leaning on the worktop by the sink, swearing profusely when I could breathe, before cumbersomely shuffling toward the living room and my comfy sofa. It was a spectacular sight - slower than a tortoise in reverse. Once I'd managed to sit and press a cushion firmly on my increasingly tortuous and restrictive belly, the period pain started. Mildly. But it was there. I know that pain. Even at its weakest, I know that pain. Staying still was the only option. Breathing as shallowly as I could was the only way to breathe to keep the searing tautness being too intense. I'd had 2 30/500mg co-codamol tablets 90 minutes before all this, so, as you might imagine, I was a little bit annoyed that this was hurting so terribly.

The right ovary. The infernal, loathsome, right ovary. It gurgled and rumbled and squelched as it usually does, but more so. And then it eased and left just as quickly as it arrived, all of 10 minutes after Mum had put the ibuprofen in and held the cup of orange juice to my mouth. A hot water bottle, more cushions, the inevitable and unfightable drowsiness after the next lot of codeine-based tablets.

It was all a bit of a shock. I thought it'd be gentle. OK, not "gentle", but gradual, slowly building, a daily increase in pains over a few weeks. But it was all within a few minutes. Baffled. And still no bleeding. Just when you think you know how endometriosis will affect you, there it is, laughing at you from the inside where you can't see it, and it knows nothing else you do or try can help stop its cocky, sneaky, cruel invasion from within.

Although, that's not completely true. I have very few options left, now, as regards treatment. The next thing on the list of prescribed jollop to try is Depo Provera. The plan would be to still put my ovaries to sleep, but without the menopausal symptoms. Hooray! Side effects? Bleeding, nausea, mood changes, sleeping problems, slight increase in the risk of developing breast cancer, backache, dizziness, weight gai-... wait, what? What was that? "It is important to be aware that women using hormonal contraceptives appear to have a small increase in the risk of being diagnosed with breast cancer, compared with women who do not use these contraceptives."

Right. I knew this about contraceptive pills, which I've had before; I wasn't aware of it being the case with Depo Provera (of which I've heard before by talking to my endometriosis-affected friends) until I researched it some more. Slight increase. It's tiiiny! Probably. I'm young! It's fiiine!

But it isn't fine, is it?

My Mum had breast cancer and is still being treated for it. My auntie has had it and has not long finished a 7-year long course of treatment. There's a lot of cancer in the family. A lot of cancer deaths. A lot of them smoked. How can you work out who was more susceptible to cancer than the others, without the smoking factor? I don't know. But the facts are there. All this was apparent before I tried contraceptive pills but my Mum and my Auntie hadn't been diagnosed at that point.

For me, it's too much of a risk, however small. Sod's Law says if I have the Depo Provera, I'll be the 1 in 8 women just as Mum was 2-and-a-half years ago, I'll have encouraged the fuckers to grow from all this messing about with my hormones. But it's not my fault if it does happen, I know that. Many things change with a life or lives affected by cancer. If it did happen to me, I bet I would feel guilty. And feck knows what else. Endometriosis is bastard which is so hard to treat sometimes and, for me, it has to be treated, or at least managed with pain relief - if it isn't, my life is a pain-riddled hell.
Of course I am not suggesting it's on a par with cancer; what I know (among other things) about my endometriosis is that it hurts. It doesn't stop hurting even with the strongest drugs I'm allowed, and it scares me. And something which may help the pain, may stop the pain, stop the periods, give me back some kind of life might encourage breast cancer. In me. Perhaps because I try to not think about it, the risk has never felt tangible before now.

But it feels more real, more possible than ever, not least because of some utterly shitty happenings to one of the kindest, funniest, most thoughtful people I've known. I didn't know Lisa in 2008 when "it" all started. I began reading her blog just a few spooky weeks before my Mum was diagnosed with breast cancer in March 2009 and had, by then, acquired a bit of knowledge about the terms, the treatments, the procedures, the processes, the kinds of doctors Mum'd see. And now, Lisa and P and all those close to them are living in a new kind of incomprehensibility and anger and devastation. And she's my friend. And I'm angry about the unfairness of it, and upset about how ill she feels, and worried about her. I cried. I told Mum how frightened I am that the same will happen to her. And now, I'm (more) worried it might happen to me. Over the top? Probably. Is it? I don't know. Because you, reader, YOU THERE - you KNOW these things don't happen to those elusive other people. You KNOW shit happens, and it can happen to you because you are not invincible. Why would you help along that vicious disease by mistreating your precious body, the only one you can have? Why make things worse for yourself? WHY? You HAVE to look after yourself. PLEASE look after yourself.

So, what can I do? I just can't justify taking the risk of increasing a risk, not now, not that one. I know it's not as simple as "have Depo, get cancer", nor will it be easy (I suspect) to have the Depo and not think every day about what might be happening, what might be changing, and if there is anything happening, is it my fault for saying yes to the Depo and, therefore, yes to making it happen? I feel guilty already and I haven't done anything! Oh, for fuck's sake.

For the foreseeable, all I can think to do for the best, best for me and my family, is carry on with the painkillers and anti-inflammatories I have. I am NOT going to risk upping the chances if I can help it. So, shove it up your arse, cancer, you interloping incubus. Ooh, that reminds me - must ask my GP for some of that rectal Voltarol...

Poetry. Allegedly.

Damn you, endometriosis, and your devastation,
Your resistance to drugs and each second of your pain
Which haunts my days and takes my sleep,
Frightening memories ingrained
Of the times I prayed to a vacant God
To help me through the days
But nothing helped - not time, not words,
There are no other ways
To stop this agony hidden inside,
Which mocks and restricts, and ruins my dreams,
Oh, those countless times I’ve cried.