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...
Wednesday, 5 October 2011
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.
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
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.
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
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.
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.
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 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.
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?
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?
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