Wednesday 5 October 2011

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...

Monday 3 October 2011

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.

Thursday 1 September 2011

Wobbly Jobbly.

Endometriosis UK is SO important to me that I almost don't have the words to explain how I feel about it. Almost.

It gave me information about endometriosis before I was diagnosed and, through its pages online, I learned more than the very little I knew then about what happens with this horrendous disease, this illness, this condition. This... THING.

It doesn't stop for me, the pain. I don't have a constant stabbing pain in my lower right abdomen, and I don't always have a heavy dull ache in my pelvis, but I hurt all the time, in some way. Of course, it is not the worst thing EVAH. But it is bad enough, and I get depressed fairly often because of it, about my future, about my prospects in life, work, independence, ohh, so many aspects of so much.

Without this fabulous and tiiiny charity of wonderful people, I would be utterly LOST, and without the friends I have made through its Facebook page, my life would be much less good with far fewer laughs and reasons to wake up each day.

PLEASE, if you can spare the small change you might pay for a pricy pint or crafty kebab or that pongy packet of filthy fags you know you really ought not have, PLEASE sponsor me to do this 5k in Hyde Park on Sunday 11th September.

But why should you? WHY on EARTH would you want to give money to a charity you've possibly never heard of because some girl asks you to? And what is this endothing, anyway? This page was the start of everything changing for me. It explains very clearly what endometriosis is. It's a frightening, confusing, unspeakably painful thing to have, and to know it can't be cured, and that operations to relieve and painkillers to ease the pain don't work is a dreadful reality to have to face.

But face it we must. And it is by no means easy. And that's where Endometriosis UK is so extremely vital to millions of people. Its existence means women and girls and their families can find desperately-needed support at the end of a phone or in the online forum, to ask questions, obtain advice, find information about how to help their wife or Mum or sister or friend, to ask if others have reacted badly to this wonder drug, or to just "be with" other women who KNOW what it is to have this thing continually destroying our insides.

If you've sponsored me already - THANK-YOU.

My target for last year's race was £500, and gave about £950 to Endometriosis UK. That amount has been given to this year's and I'm aiming to get another £550 at least for Endometriosis UK, because it NEEDS to carry on - women and girls like me NEED to know there will always be someone to talk to, and that can only happen for countless people if Endometriosis UK stays alive, doing what it does. Without it and the critical comfort it gives, some days I have wished that I hadn't woken up, and I know I'm not the only woman with endometriosis who has felt or feels this way.

This year's 5k will be worse for me than last year's, even though I'll be walking. This year's treatment has been far more difficult than last year's first course of injections and HRT, despite being exactly the same formula, which was the only reason I was able to even think about doing the 5k last year, let alone DO it. Just walking to my local shops makes me very tired and achy now. This 5k lark isn't something I do, same goes for general exercise, and I don't walk fast anymore. This will hurt me, which makes it all the more important. If it was going to be an easy thing, I'm not sure it would be "worth" giving - if you know the person doing the thing is going to suffer, I think it makes you more willing to donate. And, let me assure you most truly, I will suffer the next day. And the day after that. It will hurt me. A lot.

PLEASE help, if you can, if you want to. Here is how.

Thank-you. x

Thursday 25 August 2011

Angry Bird.

What kind of person wants to say the truest of harsh facts to their most loved people, with such venom and spite as to shock and upset and crush their very heart? Who would want to do that?

I would.

It's terrible. It's foul, and cruel, and nasty, and it's how my mind thinks when the anger rises to such levels that I fear hideous bile will force its way from my enraged soul to antagonise the one I love the most in all the world. I can't explain it. I can't explain why it happens. I don't say the things I "want" to, because my Mum is my best friend, my carer, the one who knows me so well it almost scares me. She's my Mum. She's amazing. She's brilliant and supportive and kind and generous and so much more. She's had cancer and still suffers its effects, and she STILL does so much for other people, and is still expected by some other people to do too much, but they sometimes don't realise it's too much, because she's the one who does the charity stuff, so, of course she'll do it.

Being trapped in one's home because of a relentlessly painful health condition and a mental illness which manifests itself with dark days of apparently never-ending tears and pointless panic about who knows what tends to make one slightly narked, to say the least. Depression bleeds craftily through my clumsily-built wall of denial and fear. My subconscious absorbs it without contention. My nerves gradually become more agitated, my sleep interrupted by insomnia, and my appetite impaired. I don't care for Art, or writing, or music, birds, animals, Doctor Who, Harry Potter, all of it - I don't care. It's... pointless.

In my mind, when I'm feeling thoroughly pissed off, everyone is too loud and too fucking stupid to understand that I'm TRYING to DO SOMETHING HERE.
Why won't they see it?
What the HELL is wrong with them?
What a STUPID question to ask me.
I DON'T CARE what you're doing.
I don't understand what you're TRYING TO SAY TO ME.
Just get out of my face. OUT.

If I go upstairs to my bedroom, to be on my own, it means I don't want company. I don't want to be around you. I don't want to be around anyone. I don't want to talk, because if I do, and tell you why I'm feeling like this, after you asked so nicely, I'll fucking tell you. You are DOING MY HEAD IN. The truth? You want me to tell you the truth? I want to take two of my very strong painkillers, go to sleep and forget that I feel so utterly shit and worthless and angry and helpless and useless and trapped and pained. I want this to stop, all of it. I want a better life, one that I can't have, with controllable pain, better treatment, a mind that doesn't insist on being shit whenever it fucking likes.

I can't drive a car to wherever to escape, I can't go for a walk lest I become unable to get back, I can't LEAVE this prison. I'm not a victim, even if it reads that way. I don't see myself as one. I don't think I behave as one. I can not stop feeling "low". It's not a passing "meh" - it won't lift once this has all blown over, the endometriosis and the associated pain won't stop and the disease itself won't be cured, the fatigue won't decrease, and the worry of it all encompassing my every waking second will not magically end. It's an unsolvable problem. These are unwinnable fights, and I don't know how I can keep on trying to "get better". What if I can never be better than I am now? What if this is it? Where is my love, my passion, my romance, my enthusiasm, my desire for all that makes me who I am? IS THIS IT?

Sometimes, it's time. It's just time that is needed to "heal" the current messy wounds of my own mind; other times, it's part of the joyous lady hormones. Currently, I've a suspicion it's a mix of both. I'm worried about periods returning, now I'm nearing the end of my second six-month course of decapeptyl injections. I fear the pain, the codeine increase, the days of fright, wondering what the FUCK is going on in my pelvis.

I can't stop my depression. I can't stop my endometriosis. There are medications to ease and ameliorate both, but nothing will stop either from happening, at least not now, nor in the very near future.

And so, I go to sleep.

And I wake the morning after the day of hell. The anger, the fire in my soul has gone, and I feel calm. I feel relaxed, and at peace, and I think of my life, "It could be worse. I have a family, made of love and brilliance, and friends who know", and I'm OK again. But it carries on, the circle of despair at my own self with good intentions and not enough strength to do what I have to, or what I want to.

And now, I will go to sleep, so tired from the numerous medications, the returning and ever-present pains, the depression. And the anger will be gone. Again. For a while. Until the next time. Still... could be worse.

Saturday 20 August 2011

The Bird Effect Emsemble

The Bird Effect Emsemble

Thursday 11 August 2011

Who Do You Think Me Are?

I tweeted an outrageous statement of fact on Wednesday night that people were not, as someone said, voting with their fists; rather, hurting and destroying.
This egg, whom I shall call Egg, replied rather angrily to Puffles and me with "Your oh so clever & snidey MC lets enrich our own arse values are reflected back in the rioters actions."

Was it directed at me? Puffles? Both? I'm not sure. Not a polite way of talking to anyone you do or don't know, in any case.

Egg said, "Read your profile , dont think it screams politically sharp working class urban attentätur , just saying"

I don't scream, I'm not urban, and I'm not... that last thing, whatever that is.

For the non-Twits, a Twitter bio is a space of limited characters in which you may tell people about yourself. You can lie, exaggerate, tell the truth, or not say anything. It appears, then, that because I can construct a reasonable sentence with grammar and intelligence, that I like to write, am good at drawing, raise money for charity, and like vintage style, it makes me smug, clever, and middle class.

That's clearly a very silly and unfounded conclusion to reach. Does it mean the working classes are illiterate, then? No, of course not.

Anyone who does know me, even a bit, knows I've been interested in English language and literature, and was literally capable from a very young age, that I appreciate it, and like to use it to its fullest. I'm not middle class because I can use grammar correctly; I'm educated.
If you know me, you know my desire to work, and my inability to do so because of my ill-health.
You'll know, dahling, how much I simply adore the 1940s and Katharine Hepburn and rockabilly and vintage style and life (without the blitz, thank-you).
If you know me or follow me, you'll likely be aware of how difficult it has been for me to remember that, despite the anti-depressants, the codeine trouble, the operations and so much more, my life is still good at times.
Some of you know what endometriosis is and how it feels, and you know the heartache of being told nothing is wrong with you, for years and years.
And some of the women with endometriosis and I have an inexplicable bond, a closeness I've never known before.

One may glimpse a small part of another's personality, their character, their soul, even, from some of those Twitter bio words. I don't think, though, that one can tell (from my tiny window of information) the kind of upbringing, or morality, or "class", or continuous depression and chronic physical pain and umpteen prescriptions for medication, and hospital visits and operations needed for my helpfully hidden incurable disease.

Egg - you. don't. know. me.

My life isn't dramatic; it's really bloody boring, often, not least because of endometriosis doing what it does to me, and the medication I take daily to make my life bearable. I play inane free Facebook games with 19th century frontiers, and gardens of time, and slot machines to win a purple key to open the next level to occupy myself while I wait for the painkillers to work.

Rockin' the stylish privileged, spoiled life right there, yo?

Those tablets have their own effects, including drowsiness and lack of concentration. Because of all of that, I can't work. I'd LOVE to get back to my Artwork, to create and sell and be independent. But I just can't, not now. And not for a while. I should nap instead of typing this. I am woozy, wobbly, can't focus brilliantly, and have forgotten what I just proof-read in this blog not even one minute ago.

If any class, I am working class. Why? Because I was raised in a home by a Mum and Dad (who adored their children) who worked from morning until night, doing stressful, hard, low income jobs. We didn't have much spare money, if any. IF we were given pocket money, it was 20p, or 50p, and not every week. Maybe, if one of Mum's hairdressing clients was having a particularly special party, we may've been given a whole POUND each. I remember shopping with Mum for the minimum (tiny Mum! No...), and at the till, Mum would search her purse for all the copper coins to pay for the loaf of bread we needed. This was not an easy time.
We didn't have holidays abroad, ever, and it wasn't a given that Mum and Dad would even be able to afford a yearly holiday. It's a luxury, and when you don't have enough money, you don't spend on things you don't need - I know I'm stating the obvious with this, but it's what innumerable people do every day, and it's hard. And I still don't have a passport.
We were taught manners, politeness to appreciate everything, because Mum and Dad had to work bloody hard to get what we had.
We didn't expect to have a new toy just because.
We didn't expect to be allowed to do whatever we wanted.
We didn't dare disobey Dad because he had, and still has, a hell of a scary booming voice. (I love my Dad. Twits who follow me know I love my Dad. I love my Dad.)

We had rules, and (mostly) lived by them. If we did play up, we were told we were wrong to do so, and we KNEW we were wrong. And we said sorry.
We were taught to say "please" and "thank-you" when appropriate.
We were taught to offer to help someone if we thought they were in need and to hold doors open for people - "After you". I still do that, and when I do, people are surprised. Without doing the ego thing, I look younger than I am, and I think they assume I'm in my early twenties, and to see a young person show politeness is unusual. That makes me sad. When they've recovered from the shock of my manners, they thank me, and I say, "You're welcome", with a smile. And the smile is reciprocated. It's nice. It's a terrific little boost, too, because in a very small way, I've helped someone. And they've seen a miracle.

My upbringing wasn't unique, of course. I know myriad people have had similar, decent, honest, sterling nurturing from their parent(s), so it's not as if I'm (rightfully, although not literally) singing the praises of my parents as the only people in all the world - EVAH - to have done so. They taught us to be grateful for things, to know the value of love, loyalty, friendship, kindness. And they taught us well.

I was never a shouty, screamy, greedy, spiteful, confident girl. I was bullied, insecure, severely lacking in confidence at times, I grieved for my Nan, and cried at school. At home I was happy. I have the most magical memories of my childhood. I'm smiling as I think of the cats, the guinea pigs, the games, the garden, the tents made of old blankets and pegs, the home-made orange juice lollies, the paper doilies we made with aforementioned Nan. She would always tell us "there is no such thing as bored". I could be pedantic and say there is, but at home there is always something to do. Granted, you may not want to do it, but there is always something which needs doing. Washing, ironing, cleaning, gardening, writing a letter, tidying, anything.

Back to Twitter: I wasn't offended or upset by anything Egg said. A brilliant feat for me, given my intense shyness and lack of self-belief that existed for years. Opinions? Whatever you want. It's what you think. And you're no-one to me. Hence no hurt. Interesting lines of conversation to be had, though, from it. I don't think he thought I am smug; rather, he was angry or annoyed that I disagreed and didn't react with argumentative tweets. I stated my case (quite well, I think) and I wasn't personal or sarcastic.

Egg, like so many people, seems angry about the riots and looters. That people want answers or solutions or someone to admit they made a mistake in government or authority is understandable. Some people want someone to make it less bad, make it stop, and to halt the misconceptions about it being all caused by children, youths, damned YOBBOS. Given how horrific the recent riots have been for so many people, it's not astounding. Of course it's not something which can be "fixed" in a week, the damage won't be mended in a month.

It's a huge ball of intertwined lines of problems that are going to be difficult to untangle, if that's even possible. I'm not sure it is, not completely. Wibbly wobbly and all that.

Unfortunately, I don't have the answers a lot of people want, and being angry with me for having an opinion you don't like isn't the way to be, surely? Like countless others, I have ideas as to why some things may happen, and I have some understanding of the psychology behind why some people's confidence means they don't appreciate themselves, and are not worth being kind to.

There is so much more to all this than parents' responsibility or "respect" or "free" stuff. And, while I don't have answers, it's clear to anyone with sense that there are a great many causes, reasons, problems and more why any or all of this frightening confusion developed.

I HAVE been affected by the rioting, and I HAVE been affected by the looting. But if you, whomever you are reading this, do not know for certain, assumptions make you look like an arrogant prick.

Here endeth the brilliantly modest post.

Saturday 9 July 2011

A cutting reality.

He said "I do understand" as sincerely as he could and, through stinging tears and a broken voice, I said, firmly, "No, you DON'T understand."

How can one understand something when one has never known it? How can one ever know? One can not.

Since Wednesday's appointment with my consultant, I have felt entirely depleted of confidence and enthusiasm, filled with hand-flapping joy at watching Hugh Grant and Steve Coogan be magnificent on Question Time and Newsnight, respectively, and back down to that grim cave of anxiety and insomnia which have rendezvoused and grabbed me firmly, and cruelly won't seem to let go, dragging me further in to the dank, oppressive bleakness of depression. It's basically a dementor. But more real.

I've had a laparoscopy, and I know what happens. I know the less-than-ideal Sidal soap bathing/hair-washing ritual for days before the operation. I know the very painful cannula needle in my left hand, I know the woozy feeling when they administer the painkillers in to said needle, and the cold sensation in the back of my throat when they give me the anaesthetic.
I know the gas-induced shoulder pain after, the time I'll need to heal, how to move and how not to move, with what I'll need help, I know I'll feel completely shattered for days, and that my emotions will be unpredictable while the anaesthetic fades away.

What I don't know, though, is how to feel before a laparoscopy when already diagnosed with endometriosis. Why is it a problem? Because, like too many other women and girls, the first one didn't work. ("Didn't work" translates as "I still had terrible pain with my periods" - there was such hope that I may - after 16 menstrually-destroyed years, with pain hindering everything I've tried to do owing to the sickening agonies of undiscovered endometriosis - have some genuine control over my own life.)

It was better, for a while, although the fatigue, the heaviness, the laser-sharp stabs in and/or around my right ovary and dragging pelvic aches continued. And still continues. All of it does. But now I have the menopausal forgetfulness, what feels like bone pain and stiffness all over but especially my legs, hands and lower back. There's the insomnia, the nausea, the depressive tendencies to not care about what I love, what I absolutely adore, and cherish.

Whether it's hormonal from the treatment or a reaction to the reality which confronts me with no mercy, I'm not sure. I can't change anything for now; the 5th and penultimate injection is on Monday, and on the 2nd of August I shall undergo my second laparoscopy in 17 months.
My consultant wants to see if he can help the pains I have from my right ovary, and the normal-for-me pains of my periods.

I'm not hopeful.

I don't doubt his ability and skill as a surgeon; I curse and fear, equally, endometriosis and its surreptitious skills, its seemingly completely impervious nature and utterly brutal affects.

Every treatment I've tried so far hasn't worked sufficiently or not nearly enough for me to feel at least partly well.
  • Contraceptive pill: too strong in hormone dose and brings depression back to stay with me for months.
  • Contraceptive injection: simply not an option, because the chances are it will cause depression, as above, but it would be in my system and I wouldn't be able to stop it.
  • NSAIDS: in particular mefenamic acid - was good to begin with; now does next to nothing.
  • Keral: OK but still leaves a lot of pain.
  • Codeine: well... I still have that accidental dependence after the following method...
  • Mirena: seemed perfect - it caused awful pains for the 3 months it was in. And didn't stay there properly, anyway.
  • Implanon: another treatment likely to cause me depression, as well as (like Mirena) cysts to form on my ovaries, which is not good, as I already have polycystic ovaries, and endometrioma were discovered on each ovary during last year's laparoscopy.

I don't know what to do. What if surgery doesn't help? What if the ovary hurts as much as ever? What if periods and the pain and bleeding between periods carry on, and the pain before periods? What if the depression stays, and I can't lessen my anti-depressant dose and recommence driving, begin a kind of work, strive for that thing called independence I've heard so much about?

I'm not unbreakable; I can't keep my chin up or think happy, positive thoughts when it "all gets a bit much".
My optimism is limited to reason.
I bruise easily, both literally and figuratively.

Realism, not pessimism, is the rule by which I try to think and live. When this. is. reality, when all that is offered and tried doesn't stop me feeling unwell or ill almost all of the time, what am I supposed to do? What are we, the women and girls with this hopeless set of non-options, to do?

What would you do?

Saturday 18 June 2011

I'm in the mood for lancing.


Mood music. Dream catchers. Wind chimes.


This is NHS acupuncture. For me, it meant a clinically stark hospital room with no windows, a sink, a desk, 4 chairs and a bed with obligatory MASSIVE toilet roll sheets upon it. I didn't need those, thankfully.

Admittedly, receiving acupuncture as NHS pain management treatment seems a little strange to me, but the pain continues, along with its myriad side orders, including fatigue and general narkiness in plentiful supply, interspersed with moments of laughter and joy. And, while that pain exists and the strong painkillers affect me in various unpleasant ways, I have to try other means of easing it.

I'm compelled to try to find other ways to at least attempt to "deal with" the pain(s) I feel and have felt every minute, every hour, every day for as long as I can remember. Somewhat luckily, I seem to be unaware of much of the pain while I sleep. I'm not wholly convinced that chakras and meridian pathways exist in and/or on our bodies, nor that putting needles in my (rather sensitive) skin can help relieve the severe pain endometriosis produces in me.
However, it's free, it may help me to relax (at least while I'm there), and it's not codeine. So, before the treatment began, it had those 3 positive points.

Needle Man was pleasingly frank about possible stings or pains, and was dry-witted; I took that as a good sign. The sign stating "Tea - 85p" next to the one with "Tea - £1.65" in the on-site restaurant after the appointment was a good sign, too...
We had the obligatory chat about what pains I have, how often, where, what I'd like to gain from or feel after the treatment. "Some help in how to better manage my pain", I said. "I'm not expecting a miracle; I know nothing can stop the endometriosis but if this could help somehow, that would be terrific." I'm sure the pain will never cease, nor, indeed, the countless effects it and endometriosis as a whole have upon me, but if there is relief to be had somewhere, that's a good thing. And an understatement.

That there is scientific evidence to prove it can help with the kinds of pain I have is a sort of reassurance that it's not all mystical crap. Hot water bottles, codeine, and regulated breathing like I'm giving birth to the children I'll probably never be able to have does, to a point, work "reasonably well". I gather the acupuncture sessions will be ongoing for some months, as the problem for which it is treatment is chronic.

The needles were mostly not painful or awkward. Mostly. Did it hurt? Well... yes, a bit, actually. I have a bruise the size of a 20p piece on my side. I know: fetch the Philharmonic Orchestra! I'm not complaining in the least. Lawks, if this is what it takes to help even a bit to lessen the hell that is endometriosis, then get the needles ready, Needle Man!

I'll be at the hospital again next week, on Wednesday. Not for another acupuncture sessions; that's the week after. This upcoming appointment is to (presumably) see the consultant whom I've not seen since Monday 15th March 2010, when he told me I did have endometriosis after telling me so often that I did not. I do, still, expect an apology, for he did make a mistake. I believe the delay in diagnosis led to my pain progressing to the point where the strong stuff is not strong enough. I think I've suffered more than I needed to, if anyone "needs" to at all.

I shall make every effort to ask why there are no posters or leaflets from Endometriosis UK at the hospital. In my GP's surgery, the leaflets I placed a couple of months ago have been taken and I have replaced them several times. Surely, that is a sign there are people suffering and wondering. After all is said, and after all is done in an attempt to find out what afflicts some women and girls, sometimes, doctor does not always know best. And it is still. not. good. enough.

My current treatment - round 2 of a temporary induced menopause, plus HRT, after last year's round 1 - is, once again, consuming the energy from within me like the Vashta Nerada, while simultaneously stiffening my knees, my back, my hands, and my neck, ensuring I feel as if they're becoming arthritic. It's an intensely sore aching, the bones feeling as if they're burning from the inside. My lower back is often immovable, cracking gently as I try to straighten myself.

I'm not really a typically forgetful person, but being menopausal has made my mind a vacant one. Thicko. It's not only frustrating, though; it's quite disturbing. Am I becoming ill and mindless or is it a symptom of my decapeptyl injections? I think I know. But there's still doubt.
So, too, am I not lazy. I dislike laziness. And yet, here I am, sat wearing my dressing gown, on the sofa, typing away. Dimbleby on telly talking about How We Built Britain, cup of tea on the table beside me. But I'm not lazy; I just appear to be.
Walking hurts me, always, but more so now. Trying to sit and stand and lay comfortably is not often easy, now.
My not doing much about the house - minimal vacuuming, dusting, tidying, cat-feeding, and the rest - isn't because I'm not bothered or I don't care. It's because it hurts. I'm also still weaning myself off the co-codamol, and this is now week 4. And taking painkillers for this kind of hurt isn't an option, because they doesn't work.

It's a sighsome situation, y'know. If I think about it too much, carefully analyse my life, what happens to me, how it affects my parents and brother, the stress I indirectly cause, I feel that horribly familiar sense of dread and desperation creep along, the anxiety-producing adrenaline sending that cold, sickly feeling to my stomach, my heartbeat quickening irregularly. I panic and cry and shake with fear that there is no solution. There IS nothing to stop endometriosis, because it will always be there and even with this current drastic treatment and the removal of my right ovary, I'll not feel "well".

It's not just about problems with periods; it's a lifelong condition, a disease, an illness. Whatever you wish to call it, it is a fucker of a thing to have. You can't see it from the outside, you can't really tell what's wrong or that when you talk to me, I'm hurting, constantly, the pain never ceases, there's always something there, something aching, piercing, tearing, swelling, aching, and dragging.

I seek attention for Endometriosis UK, but not me. I want you to know, if you don't already, that Endometriosis UK provides the most welcome services of understanding and such invaluable support for when we feel overwhelmed by the fucking huge hurdles ahead of us. These aren't piddly little fences to hop over. These are some of the biggest bastards you've never seen, the steepest stairs with no rail to hold on to, up the steepest mountain of endometriosis, the disease laughing in our faces, us looking back at it with red anger and fear.

The way I feel at this moment, as I type, right now, this second, I've no idea how I'm going to get on the train to London, let alone get round the 5k in Hyde Park in September.

But I shall. I will bloody well do it. And I'll bloody well have a superbly awesome time getting more money for Endometriosis UK at my 30th birthday party in November. Small things, short walks to the shops, a drive with Mum (she does the driving) to the next town, a visit from a friend, tire me, but I'm going to make sure that day is one of the best I ever have. Lots of planning, though. Bit tiring. Bugger.

And now I need to eat. Oh GOD, my life is SO UNFAIR!


Thursday 24 March 2011

Howe did he do?

Late last year, Baroness Smith of Basildon asked questions about endometriosis in the House of Lords. Earl Howe provided answers. I don't think them to be satisfactory. So, I wrote and told him so. Here is my letter:

Friday 11th March 2011

Dear Earl Howe,

I write regarding your answers in response to Baroness Smith of Basildon in the House of Lords, on 20th December 2010, regarding endometriosis.

Concerning your answer to her first question, it’s not clear what the government is doing to ensure greater awareness. The online solution only works for people who have Internet access and know about this terrible condition. A purely online solution is not considered an adequate way of informing the public.

In the UK’s Endometriosis Awareness Week, which ran from 2nd to 8th March, there was no apparent plan to increase the extraordinary lack of public knowledge and awareness.
There was no mention (on 2nd March 2011) to be found of anything about the Endometriosis Awareness Week on any of the NHS websites you mentioned in your answer.
The NHS Choices and NHS Direct websites do feature very informative advice about endometriosis but they are online.

The Department of Health’s website features nothing at all about endometriosis. This can only add to the number of ill informed GPs, obstetricians, and gynaecologists, when the government’s own dedicated website of guidance for NHS professionals does not even mention endometriosis.

I would like to know what the government will do to greater enhance the public awareness of endometriosis among those without Internet access, and to better signpost for those that do, the online material on the NHS websites you mentioned in your response.

I would like to know what the government will do to ensure that the guidelines for healthcare professionals will be used by those for whom it is intended.

Your response to Baroness Smith’s second question doesn’t seem to take in to account that some gynaecologists still suggest the unreliable transabdominal ultrasound scans to determine, conclusively, the presence (or, indeed, absence) of endometriosis in a woman or girl’s pelvic region. As the Royal College of Obstetricians and Gynaecologists states in its “What you need to know” information leaflet for patients, published November 2007, “A normal scan does not rule out endometriosis”.

Without a gold standard laparoscopy having taken place, women and girls are continually being told that, from results of a transabdominal ultrasound, and sometimes, equally unreliable blood tests for CA-125, they “do not have endometriosis”.

I am collecting a growing number of case studies to show that women are suffering unnecessarily due to GP and, at times, gynaecologist ignorance; each one was told that, because the ultrasound scans were “clear” and/or blood tests were “normal”, there was nothing wrong with them. This sentences countless women and girls to years of neglectful agony because some gynaecologists and GPs ignore the guidelines by which they should work.
I would like to know what data the Department of Health has on:

i) The number and percentage of patients diagnosed with endometriosis (compared with other countries, if possible);
ii) The number and percentage of patients diagnosed with endometriosis using the gold standard of a laparoscopy; and,
iii) The average waiting times for treatment after diagnosis of endometriosis.

I would like to know if these findings have been published, and, if so, when and where. If not, I would like to know why.

With regards to your answer to the final question, despite endometriosis being a specific topic within the undergraduate medical curriculum and in core specialist medical training for obstetricians and gynaecologists, many among them seem staggeringly unfamiliar with the disease. This is true of GPs, too, about the symptoms of endometriosis, visible presence of it during laparoscopy, as well as treatments, and overall impact on the health of those directly affected. Comparisons with, for example, the French system suggest that we are lagging behind and have a poor performance, and are severely letting down and prolonging the suffering of our women and girls.

There is a growing feeling amongst those who suffer that the training for GPs is inadequate and very far from satisfactory, based on the experiences of women and girls who have suffered the most horrific pains. Time and time again, doctors do not apply what they have learnt, and what they have learnt seems gravely insufficient for the patients in their care.

Fortunately for me, and quite rare among the women to whom I have spoken about this, my own GP has been very good in listening to me through the years and has acted efficiently and with empathy. I am exceptionally grateful to him and his continuing high standard of care. Conversely, since I first sought help with my own “bad periods”, aged 18, I have seen 6 gynaecologists before last year finally being diagnosed with extensive endometriosis, aged 28. In all, I have suffered with period troubles for over 16 years, and the outlook for me is not one of a pain-free life ahead.

I would like to know what checks are undertaken, by whom, and how often, to ensure that what doctors are taught about endometriosis goes on to be practised. So often, correct diagnoses and treatments, that are required to prevent lives being ruled and destroyed by endometriosis and its unforgiving symptoms, are unnecessarily delayed, sometimes for over a decade, during which time severe irreversible internal damage occurs, not forgetting the all too frequently mentioned cyclic and chronic excruciating pain.

For your information, I am copying this letter to Baroness Smith of Basildon, Jane Hughes at the BBC, BBC Look East, Endometriosis UK, Royal College of Obstetricians and Gynaecologists, and Fiona Godlee, the editor of the BMJ.

I look forward to your reply.

Yours sincerely,

Miss Lucy Palmer.

Tuesday 15 February 2011

Ooph! orectomy.

When I don't have a period, I think I purposefully forget how fearsome the pain is. It's a rubbish self-protection system. This most recent period convinced me that the removal of my right ovary is certainly looking and feeling like the best decision I can make.

I could barely stand by myself, as my strength was drawn away by the period; my legs threatened to collapse as I struggled to stay upright. Ish. Both my parents were propping me up, with each of my arms holding them so tight my knuckles were white and I almost couldn't let go. Shaking from the what-should-be-unbearable sickening hurt of endometriosis, I was close to passing out - I wished I had; it was a much more preferable state than the nauseating one I was in. Primal howling and childbirth-style breathing ensued. My hell was truly back, tearing me apart inside with its apparent white-hot dagger and the unimaginable terror it inflicts, every period, without fail.

This, reader, is my reality. It's not exaggerated; it doesn't need to be. There's no "Artistic licence"; I'm not a good enough "writer" to have that. This is how it is for me, and, sadly, hundreds of thousands of other women and girls. No, make that millions. For me, the aforementioned hell last 3-4 days. They're my worst days. And then it will carry on - but far less painful - for another 5-7 days. The general pelvic heaviness, the back and all over aches, and stabbing ovary pains are always there, every day, and periods are no let up. They drain me of my precious energy, or "spoons".

And what of the endometriosis period fear? And the constant feeling of "unwell", as "normal" for me? I'm really not sue I can do it much longer. Of course, I have to. I can't just give up. I have to stay alive, and live, and love, and be a daughter, a sister, a niece, a friend. I want to stay alive, but when life is like this... I sometimes wonder what the point is. I'm not suicidal, but this current way of things is so. f-u-c-k-i-n-g hard. to. cope. with. No-one can ever know how they'd feel in any one situation unless they've lived it, or had to make the choices associated with it, or take all the tablets to keep the inner agony at bay, as much as is possible with an ever-increasing tolerance to that medication.

One of my exceptional friends, Lisa, struck the (almost) perfect chord since the E major was discovered. She did so with a particular blog post in which she talked about the loss of her ovaries. As I type, and certainly for a year or so (definitely pre-laparoscopy), I've not wanted to have a child, I haven't felt the urge to be a Mum, I haven't felt "broody". Maybe I feel like this because I might not be able to, because of the irreversible damage to my ovaries from not having the correct treatment at the right time. Maybe it's because I don't want to have sleepless nights and shit and vomit all over me. Maybe... I just don't want to be a Mum. It's not instinct to want to reproduce. It's not necessary for the humans of Earth that Lucy with the curly hair has a child to further the cause of life.

Along the lines of what Lisa said, I'm still caring, and nurturing. If my Mum, or Dad, or brother is ill, I want to help them. It nearly broke me when my Mum was diagnosed, operated on and treated for breast cancer in 2009. When my cats have been ill, I've been in bits, waiting for the hours to pass, to find out how they are, if they're awake from anaesthetic, if they found cancer, or dodgy kidneys, or iffy thyroids. How on EARTH (without Little Lucys) would I cope if my own child were to be ill? Would I cope? There's no "have to" about it. I might not survive the anguish of it all. What if he or she died? That would surely be the end of my life. Maybe that's why I feel I don't want children. And if endo was as bad as ever, how would I look after a child AND me? I can't even look after myself now; how the fuck would I manage with a a child, too?!

Unless you know me - I mean REALLY know me - you've no idea how spiteful and nasty I can be when premenstrual. And I AM extremely unpleasant to be around. The anger and vitriol I feel toward strangers and my own, closest family and friends, is tremendous in the worst way possible. I want to hurt people, and make them feel guilty, I want to upset them. If I "did" hate, I'd hate it. I'd hate me. I have that whirl of cruelty spinning round and round in my head, and I can't stop it. It happens every. single. time. that I'm due for a period to start, whenever the hell it decides it will be. It never tells me. Why should it? I'm only the fucking HOST.

If I carry on like this, being unable to care for myself on the worst days of my periods without someone helping me do nigh on everything, how could I ever live independently? I wouldn't want to live alone. I couldn't. How can I ever recommence driving? How can I work? How can I travel without wondering when I will be ill? What life is this? When I am at the mercy of this vile hidden disease which controls my life through its pain and fatigue, and what what feels like never-ending stress, depression and doubts, and regrets, fear and overwhelming guilt for the burden I feel I place on my parents, month after month after month.

This isn't dwelling, or negativity. This is my life. These are the facts. If this is your first reading of my blog and you're this far in - hail you! This blog post is what goes on in my head, all the time. I wake up thinking about it, because I hurt the second my eyes open. I think about it in the daytime, as I take the codeine-based tablets. I think about it as I try go get to sleep, with myriad pillows and cushions to prop up my legs in such a way that nothing is strained and pained too much. It does get shunted to one side, sometimes, when I'm thinking about a tea dance, the clothes I might wear, the DVD I might watch, the food I might have for lunch, the yarn I might buy... But it's always there, somewhere, in the dark, in the corner, hiding, waiting to push me back to the unforgiving, chilling reality. This is what happens after years of neglect and misdiagnoses, and incorrect treatment, and ignorance.

Endometriosis destroys lives, and means some of the most unenviable decisions must be made, simply to cope with life. The decisions are often from very few quite unreasonable choices:

~ "Menopause or infertility? Agony or menopause? Agony or infertility?"
- "Uhhh, can I get back to you on that?"
~ "Not really, no. If you don't have children now, you never will! Have a nice day."
- "...oh."

It's not a problem just with periods. It's all. the. time. And I'm tired. I'm not lazy, I'm not not disinterested in the things I used to do. I miss them. I want to do them. I want to draw, and paint, and photograph (nearly) everything I see. I am, though, so very tired. I abhor it.

Now, if you don't mind, my bed is warm and my eyes are heavy, so I'm going to get to sleep. Shh...

Tuesday 18 January 2011

Mama, I just killed a plan...

Motherhood. Children. Family. Do I want that? I don't know. As I type, I don't feel "maternal", in need of a child of my own, or have the desire to nurture a baby. I'm a 29-year-old single woman with an undesirable and incurable health condition, which makes just standing up almost an impossibility and the floor an attractive place when I have a period. Now, pain is here, has left its bags in the hall, and it's not leaving. My life now is not a good one. It has little "quality". I have no control.

I don't know what to do.

Being told to look on the bright side, or to be positive, or one of the myriad other cheery sayings, doesn't help. Frankly, fuck off. (If you find that offensive... then... don't. You should know "my style". (God, I didn't just put that, did I? I did? Fuck.) This is me being honest, and truthful. This is me wanting you to have a bit more understanding about the fear in my whole being, the savageness of this disease, the sense of foreboding.) (This is also me assuming you don't know about endometriosis. Google it if you don't know; please don't just lazily ask what it is. This is a much underrated, very misunderstood problem and more ignorance (I don't mean arrogance, before presuming I'm being bitchy) is not needed.)
I can't look on the bright side, because there isn't one.
I can't be positive, because all my plans, choices, decisions are so often governed by what happens inside my body, something over which I have no control.

I know people mean well when they says things like the examples in the above paragraph, and it is nice that people care. But so often they, or you, are not aware of what endometriosis truly means when it gets as bad as it is for me, or for so many of my friends.
It's really good that your friend had endometriosis, and had an operation, and is OK now. That's brilliant, actually. If she has relief from this hell, I am truly so pleased for her. But it's not that way for me, and don't ever say you know what I mean if you don't: you don't know how hurtful that is to me, and every other woman or girl who lives this unforgiving life. I am not weak; I am unwell. There is a difference.

It's difficult when people you thought would have empathy show that they really have none. Calling someone like me a lightweight, or junkie, or lazy merely serves to add to my less than high opinion of some people with the lack of appreciation for what endometriosis is and does. That hurts. That really hurts, and helps to set my mood lower, and make the already-slippery slope to "better" more slippery than an eel in a barrel of oil. I don't want pity, of course. I'm not sorry-for-herself Lucy. I'm not negative; I'm realistic. And I've learned, now, to understand that some people (literally) don't get it. They can't understand because they don't have the pain, or they just don't have the capacity in their hearts to be that way. And/or they don't have a womb or ovaries.

This complete mess of a situation is yet more complicated by depression and its heinous demons of darkness, and the emptiness which fills my mind with the worst kinds of thoughts about what everything means. What's it all for? What's the point of me struggling through all this physical terror, all this internal torture, taking four or five types of medication a day, waiting, desperately for it to stop? Why is this happening? Why won't it fucking STOP?! And it doesn't stop. The pain doesn't stop. Yes, it lessens, and yes, the "period pain" [endometriosis destruction] ceases, but it's soon replaced by the heavy dragging of pelvic pain, that other never-ending blight of my pelvis, as well as the piercingly sharp and simultaneously dull ache radiating down my leg and up my back. And all from my little right ovary. And so, more medication. More opioids.

Right now, at the time of typing, I have a headache, threatening to morph into a migraine. I feel sick, and dizzy. I have palpitations, and insomnia has come back to play. None of the feelings is stopping. They're the symptoms of codeine withdrawal. On the most painful days of my period, I took about twenty tablets in one day. Co-dydramol isn't made in 30/500mg tablets, so I have to take two 30mg tablets of dihydrocodeine tartrate, and two 500mg tablets of paracetamol. Keral (anti-inflammatory) is still being taken with Omeprazole (an antacid), as Keral still conflicts with Citalopram (my perfect anti-depressant) and could still cause my stomach to bleed. I've had opioids of some kind at least once every day for the last two weeks. It's not a purposeful addiction, if anyone could call it that; it's an entirely accidental one, caused by endometriosis tearing me apart inside, damaging me in ways I may never know.

This period is nearly finished, shorter and lighter than usual. But the pain is as bad as ever it was before the laparoscopy and injections. I was, maybe, naïve to hope that it would be different now, that it'd be easier, less disabling, not so horrific. I was wrong to hope. Why didn't I realise it will always be like this, unless something drastic happens? Unless another operation is done. I doubt another laparoscopy would do much. It didn't seem to help significantly last time which, again, I'd hoped would be the case. If I have a hysterectomy and/or oophorectomy, I could be destroyed emotionally, should I "settle down" later and feel maternal. If the relationship is right, it wont matter. That's not "the thing"; "the thing" is the ability to have children of my own, and whether or not I will change my mind, should I have the ovaries taken away.

With these continuing troubles, the pain, the withdrawals, the anxiety, my inevitable hormone hassles, and trying to find a solution to it all, I'm feeling more depressive tendencies than I have for a while.

And it all comes back to the same words: I don't know what to know.