Friday, 30 March 2012

Anniversary Special


It's easier to be the person having an operation than to be one of the people waiting for news. Today has not been difficult, as such, but it has been witness to some stress and concern. And yes, a bit of worry. My Mum is always worth the worry, of course.

On Sunday 1st April, three entire years will have passed since Mum had her lumpectomy after being diagnosed with breast cancer mere weeks earlier. Outside was bright and Sunny, the birds still flitted and sang, the people still shopped for food, the night still fell. I remember not being angry about the situation in which we all found ourselves. ("We" is always Mum, Dad, brother, and me.) I felt angry that my Mum had to suffer yet more physical pain and more stress and more depression because of cancer. That bastard, the fucking shitster cancer.


Having cancer is bad enough. Jeez, it's hell. Having to undergo surgery to take away part of your body because of cancer is yet worse. But having seen my Mum suffer pain and all the other things that occur with a situation like that, and then be told that the cancer was more devious than they had previously thought is... well, it's terrible. We didn't know if that meant she'd have to have chemotherapy or radiotherapy, whether she'd be confined to a bed, whether she'd still be there at Christmas.

The tests post-op confirmed what no-one wanted to ever hear: "The cancer's spread." The lumpectomy wasn't enough. A mastectomy was needed. And so it happened. Devastation, research, tears, disbelief, fear, more research, more tears, anger. More anger. Lots of anger.

It all happened shortly after I'd gained some reasonable knowledge from reading alrighttit.com - big words, technical terms, how procedures were done, what happened first, which leaflets were given. God, SO. MUCH. STUFF. If you haven't read any of it, shame be upon you! Lisa is superb, P is wonderful, the families are gold. DO IT. DO IT NOW.

The breast unit which treated Mum was - and still is - outstandingly good. Her oncology team was wonderful. Utterly, truly wonderful. (There was a time I had to see the same surgeon when I had something of an unusual boob occurrence - no, none grew, sadly. From personal experience, he is a safe pair of hands. But that's irrelevant.) I knew when she'd have to be admitted for about a week to have her mastectomy she'd be very well looked after. The ward staff were so caring and careful, so thoughtful. I couldn't see Mum for a few days, because she was too unwell to see more than one person at a time and, of course, that one person was my Dad. We couldn't hold her, we couldn't squeeze her tight in our arms and keep her safe, because she was in so much pain that she couldn't speak at times.

One of the most brilliant things in my life is seeing my parents smile, seeing and hearing them laugh. That stalled for a while in those horrendous dark days. We still laughed. We had to. and we did because we couldn't not laugh. It's part of our lives. It's so important, and I think sometimes some people forget or don't appreciate how vital humour is.
We knew how lucky we were, though, because the mastectomy was, said the doctors, absolutely the right thing to remove what turned out to be aggressive cancers. Plural. Chemotherapy was not needed, nor was radiotherapy. The relief in my entire being was indescribable, after reading Lisa's experiences of it all. And even then, she left out information.

My parents, being soulmates, were equally as affected by this awful time in our family's history. Even though three years have passed since the surgical beginning of it all, it's not less disturbing and bizarre to say "My Mum had cancer". My Mum? MY MUM? You must mean someone else. You CAN NOT mean MY. MUM.

With all these reflective emotions and hormonal upheavals, it's not surprising this is not the jolliest of posts, but nor is it the most depressing. I know so very well that our lives could be so much worse, so difference, so dreadful. I have such dear, such lovely friends whose Mums have, in recent years, had drastic surgery and chemotherapy, friends of the same caliber who have been and who are going through that same kind of hell. It makes my endometriosis seem pathetically unimportant. I know neither it nor I am pathetic but comparing it to cancer makes it seem... well, so much less terrible. I'll hit myself in the face when this period arrives for saying that, I'm sure...

This current time of concern for my Mum is, as I said at the start of this post, nothing like that of 2009, but it doesn't change the level of care which exists. I would do ANYTHING for her and my Dad. I still think of those times every day. It's impossible not to, for me, because Mum and I spend so much time together, and we talk about all sorts. Around the house in their usual places, there are the hospital booklets and appointment letters and the post-surgery underwear catalogues from a friend. There are hot flushes and low days, the scar and the not-actual chicken fillet, the tenderness of nerves and skin that have still not healed fully.

And I will not tolerate anyone's extreme stupidity, the misguided ignorance of someone thinking they're helping raise awareness by insulting people, the telling me I should prove I know about cancer and its effects on people. I'm not sure why there are those among us who feel they must assert themselves in those ways, why they can't see how wrong they are. The selfishness of some people I've known is astounding, and the reluctance to admit wrongdoing is staggering, given the subject. So, I swore a bit. And? You'll get over it.




Now, if you don't mind, I need to eat a whole pack of Strepsils and a ton of ice. Goodnight.



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Tuesday, 27 March 2012

Padding


I was reacquainted with a different kind a pad yesterday. It wasn't the miserably familiar sanitary kind, but that of the paper variety. Cartridge paper. Daler-Rowney. Thirty pages, each 130g/m2. Pencils. Soft, hard, chalky, smudged, lines, shading.

It took a lot for me to do it. It was a mental challenge. Physically, it was easy. But I'd not done it for such a long time, I wondered if I'd be still able to draw what I saw in front of me and make it look the same. Or at least similar. And I worried that, if I couldn't do it anymore, what was I going to do? It wouldn't be the end of my world as I now it but I'd certainly feel stupid, and useless, and a failure. A failing, non-drawing twerp. It was a hurdle, one of those things to overcome, a fear to knock out with brutal force to prove to myself - never mind any other person; I'm tough enough to prove things to - that I still can call myself an Artist. I only sketched 3 or 4 things but I did it. That's what matters. I did it.

I'm glad I did that yesterday because, despite the still-glorious weather and the gentle heat, the birds singing and flitting between trees and eating the food I placed out there for them, I feel quite rubbish today. In a matter of hours, I felt the transition begin from feeling reasonably all right to feeling really not right, when the heaviness arrived. Yes, indeed - the premenstrual ughness is back. Already! For heaven's sake! So, the strong tablets, the disturbed sleep, the confused appetite.

Compared to my usual posts, this is mercifully short, but I wanted you to know that I've done one of the things I was so concerned about, and that I was pleased with what I did. I may show you, I may not. Not sure yet. What I do know, though, is that I'm very tired and still working through those bloody photos, reducing the sizes and moving them to different folders. Time for tea, I think.

As George Michael said, "Let's go outside". But only for sitting and drinking tea. No sex, please - I'm British. And I've got a headache.





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Wednesday, 21 March 2012

Changing the guard


No traffic. Occasional buzzing of a light aircraft overhead. Delicate rustling of the birch tree beside me. The intrigued meaows of the cats as they surprise one another from behind the lavender and euonymus. My dark hair absorbed the glorious heat from the Sun on a perfect Spring and, as I closed my eyes, I was in the place I call to in my anxious times, my ideal safe place, the place where everything is all right. My lovely garden and my lovely home.


Last night, Mum and I had been at a neighbour's house with several others to discuss plans for our Queen's Jubilee street party. Even if no-one wants to say "Hoorah!" for HRH Liz, they can at least have a nice cup of tea and a bop to Glenn Miller. My headache had not - and still has not - left me for days. I am still 95% certain that it's a sinus problem. Still. Again. Last night was the time of something else "interesting": the taking of my first Duloxetine capsule. Yes, it's my new anti-depressant! *Dramatic music.* I know. No more Citalopram. Shocker. I've surprised myself by how relaxed I feel about the change. I'm more comforted than perhaps I could've been after I discovered that Duloxetine is used to treat generalised anxiety disorder and... pain. I'd taken Amitriptyline for a few years a long time ago and again last year at a low dose after nerve bruising resulting from my second laparoscopy.

While I've been honest with you lot about my depression and insomnia and endometriosis, what I tend to hide is the anxiety aspect. I hide it from me. Or, I try to. It never bloody works, so I wonder why the hell I keep on trying to pretend things are OK or that they will be. Soon. It'll all be fine. A few weeks and it'll all be OK. But it's never that simple. Because of the anxiety, I've felt nauseous every day, my appetite has been quite rubbish, the aforementioned sleep disruption is building up to ARGHsome levels. My shoulders have been so friendly with my ears that I'm beginning to look like Gladstone Small.

I have months of "OK", and then a low, tearful, woeful wobble. And it repeats. Over and over. And this is a low wobbly bit. Eurgh. And all the fears of how to cope with it all, without Mum and Dad, how to live a "proper" life, how to try to relax when everything seems so hard to do, they all come back and punch me so hard in the gut it winds me. And I don't know what to do. Someone saying, "chin up" or, "rest for a few hours" doesn't help. I know what I need to do, but that doesn't mean I can do it. Depression isn't a simple "chin up = suddenly feeling better" equation. It's a punch-worthy thing to say.

It's something so bafflingly complicated and beyond reasonable logic, I wonder if Albert Einstein and Stephen Hawking collaborating on it for 50 years would lead to an answer. I can not cheer up. I can not take things easy. And while I'm bloody annoyed, I'm not brave, either. Living a life of pain and depression and fear isn't a choice I've made; it's something that's just as it is. It might improve. It might not. But it's not bravery. It's just... it's living. That's "all" it is.

Duloxetine and Citalopram are different types of drug; the former is an SNRI and the latter, an SSRI. Citalopram helped me a hell of a lot but maybe it's reached its limit. Maybe it's just not working enough any longer. I don't seem to have control over the anxiety like I used to, and part of me suspects it's because of the stresses of endometriosis coming, once again, to the fore to be all I bloody think about. I have high hopes for but not unrealistic expectations of the new fella. The bouncer outside my brain, protector of my prodigy, guarding my grey matter. But not the grey hairs. They can sod right off.

The places I've been invited to are family and friends' homes, they're full of welcoming love and comfortable atmospheres. I would love to go to all those places I've been invited. Gosh, I really would. But. Aside from endometriosis period stuff potentially being my jailer at those wretched times, I also fear myself. That is to say, I fear possible anxiety and panic attacks. It's so easy for one to avoid those situations or places that may be where anxiety and panic rear their exceedingly ugly heads, but one can't avoid them forever. The list of places grows so long there's almost nowhere left to go because the possibilities increase and then nowhere is safe. ARGH! Why do I let it bother me so? Why do I let it control me so much? Am I weak? Am I?


No. I know I'm not. Heavens, after all the pains of endometriosis, and the acutely depressive and deeply suicidal thoughts I felt when I was 13 and 14, I should think I can handle a bit of tough. Not too much, though, please Oh Holy Great Big And Really Rather Pretty Cosmos, please. Please. I have, after all, still the depression to contend with as well as all those other things: the stress of pain; the knowledge of pain; pain medication; managing and taking stock of my pharmaceutical cabinet filled better than Boots (i.e. the kitchen cupboard); hospital appointments; benefits. It's so hard to be "positive" when so much seems to be shit.


Baffingly, as I composed this post on the bench on the decking, under the birch, beneath the wonderful warmth, the only pains I felt were in my sinuses and my headache. My shoulders were still spying on my eardrums but nothing hurt. I mean, aches were still present and I was tired as heck but... it's weird. I'm not dismissing it, not at all; it's that it's different. When something is different, even if it's good, it's not necessarily easy to get used to.

So, did I go mad at the ironing board? Stay outside? Clean the bathroom? Sketch some... sketches? Dust and vacuum? It's "relax" or housework; I don't have enough spoons for both. When I came back in for another up of tea, the robins were still singing, the clouds were still passing slowly overhead, the breeze was lighter than a whisper upon my face. I wanted to stay out there. I wanted to go to sleep out there, in the quiet, in my mind's calm place. Had I stayed out there, I'd've felt guilty for not helping when I could have.

I cleaned the bathroom. And my headache still weighs heavy. I'd ask you to play violins but you'd disrupt the...












Monday, 19 March 2012

Knees bent, arms stretched, ra-ra-arghhh...


It's not yet two weeks since Floodway Thursday, and look at me: laid out on the sofa, blanket over me, hot water bottle on my front, heat pad on my back, and strong painkillers in my face. Again. It's not another period; it's one of the mid-"month" bits I loathe almost as much as the periods.

It's not period pain, but pelvic pain. It's heavy. It drags. It's sharp, and drawing, and piercing. It aches deep inside in all the bits you can imagine and more you can't, and it won't stop unless I take painkillers. As an aside, I think I also have another sinus infection, on which I'm blaming my meagre appetite, stuffed up nose and relentless headache. I'm not sure if it's my perception of feeling a bit more ugh or if I actually am feeling that way that's made me tearful. I've felt really quite low and, while it's always easy to blame it on hormones, it might just be something other than. I keep experiencing trouble with my face, ache-worthy as it is. My sinuses always feel blocked, I have a (newly-discovered) deviated septum, and regularly feel pressure in my face. Usually, it'd be my brother using his hand to push me out of the way (aha ha ha) but now it's that unsettling feeling of a headache which just. won't. stop.

To a point, I can control my "normal" pains. I feel some pelvic aches, I take the appropriate tablets, I wait an hour or so, the pain lessens. I feel sleepy, sometimes giggly, always unable to concentrate. Occasionally, I can't speak coherently. That's when I giggle. And others do, too. The sods. It is funny, though.

When I went to the hospital a few weeks ago, they gave me a booklet called "Your guide to managing chronic pain" - it's full of wonderfully supportive words. It doesn't tell you to think positively to wish away your pain, because that's not how it works. It doesn't magically disappear and they know that. I know I've iterated this fact before, but I'm going it say it again: they believe me! They believe us!

Several days ago, I happened upon Krishna Talsania's article about the reporting of benefits "cheats" by uneducated readers of The Sun. In the piece, she says what I, and doubtless innumerable other people, have felt for so long: "It is a strange burden to have to be conscious of strangers' perceptions of your disability, rather than concentrating on striving to live life to the full." I still feel concerned about what others think of me, walking to the shops with such apparent ease. She's buying a set of pens? From Lidl? She must be laughing at all that money! No-one has actually said that to me but maybe they've thought it. The first thing people (who've asked about my employment situation) seem to wonder about me is why I'm not working. I could be working, of course. I could be a part-timer, I could be self-employed, working at home, on holiday. But when they know I claim benefits, but not necessarily what for, I can see in their eyes - not all people, but some - that they doubt I'm really deserving of the money, of the "attention".

The NHS pain services are, as mentioned, fantastic. Well, they are to and for me. Some of their literature includes some words of wisdom (also known as "common sense" in some quarters), and includes, "However pain in both the short term (acute), and long term (chronic), can be severe enough to lower quality of life, and in severe cases profoundly disrupt your ability to engage in day-to-day activities. Pain can also cause both short-term and long-term emotional and mental health problems."

Chronic applies to me. My quality of life is, currently, less than ideal. It's crap, actually. That's not to say I have no reason to live; I have many! Jeez, I can't count how many - that's how many. Yeah. Amazing. Anyway. It's the relentlessness that gets people down. I know this as a fact because I have spoken to people and read "stuff" and things. (I have.) The frustration and lack of social interaction/reduction in social life are the two aspects that people with chronic pain mention most often as the things that really, really get them down. They really, really get me down.

Here's something extremely pathetic: the new Lidl leaflets are something to look forward to. Just hear that tumbleweed go! There it is, look. All tumbly and... and weedy... See also: new Avon catalogue. And I genuinely really like the Avon catalogue event. I do. Less exciting, though, are the arrivals of the Kleeneze and Betterware catalogues.
Walking to Lidl, or the Post Office, or the charity shop from whence so many of my books have come is something to sort of prepare for. It's not Everest, admittedly, but it takes effort and it hurts me. It depends when I walk, though. When in my "cycle", that is. Premenstrually is not good for me. Yesterday - Saturday - I was not premenstrual, but it was still a little too much to do. It sounds so dismal a way to do things. And it is, reader. Dear reader. You poor sod.

The NHS booklet, with that comforting "we know it's not something you've made up" tone, has images of several gentle exercises to help you achieve tension release, and the stretches are easy to do. I still have to get back to the yoga. I did recommence it, and I felt good! I actually felt good. Well, not "good" but... but I felt "better". No, thinking back to it, I did feel good. And I tell you what, that's worth so much to me I don't even know which words to use to express how it made me feel. And then I stopped the yoga. Why? That's right! I had a period. *Sighs out loud.* I just sighed out loud. True.

In my last post, Housekeeping, I talked of my task of sorting hundreds of photos on my laptop. I'm still sorting them. There are more than hundreds. I think "thousands" is more apposite. It's taken so long, I can't believe it! Resizing photos from 4MB to 300KB, moving them in to new folders more appropriately named than "STUFF", moving them again to sub-folders more appropriately named than "OTHER STUFF". It takes time is the thing. And it takes effort. Bloody effort. Sitting. Just sitting, typing a few keys, clicking a few buttons.

But it's not. Because I also have the dihydrocodeine, which makes me very drowsy. The pain for which I take the tablets makes me fatigued and moody. The anti-depressants make me drowsy. I've said all this before. I'm basically always tired. And mental concentration has taken it out of me. When I'm "tired", I get emotional. And that's why I cried myself to sleep on Friday night.

The frustration of the computer being too slow, my pelvic cavity being a git and hurting every place it could two hours after I took two of the strong tablets, the cats' snoring getting louder, my face full of sinussy snot. *Cue dramatic bit* This bleeding, broken flesh prison, which doesn't let me have a break from any of it, is waiting until the next event to laugh me down and suffer simultaneously, in a fortnight's time. Or three weeks' time. Or four weeks' time. I don't know. It's day *checks calendar* 15 of my "cycle". I am dreading the next time I am sentenced to the sofa with almost all my independence stolen from me by my own womb and ovaries. *Understands this is endometriosis, which is not fatal, and realises this may sound theatrical when others suffer so much more.*


So, does anyone truly believe I, or other people, want to not work? That I'd not want to earn money through working? I think some people think I enjoy this life. I think those same people think that, as I said in the previous post, the pain stops once the state's money is given, that the mood lifts, the Sun shines, and the rain clouds disappear. Oh, look! A Disney bluebird flying round and round, over by the window. How quaint. I've had three doses of the strong stuff today. It's all helped. It's relieved the heaviness, the sharpness, the piercing stitch-like ovary pains. It's helped. But that's all it does. It doesn't stop anything. It doesn't cure it. It's all temporary. The laparoscopies are just maintenance. It's all just... housekeeping.





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Thursday, 15 March 2012

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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Sunday, 11 March 2012

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 fa├žade 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.













Wednesday, 7 March 2012

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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