Monday, 30 January 2012
Wednesday, 25 January 2012
Tuesday, 24 January 2012
The benefits of being a bloody burden.
From my vastly informed experienced, it appears that those of us who are fortunate financially - and are in government - are able to imply that this current wave of austerity affects us all, while knowing it does not and will not affect them.
I have no bitterness about people who are comfortable, financially. I feel anger about pointless and stubborn reluctance to think another way, to accept the possibility that, maybe, what some people see is only what they want to see because the truth is not preferable. It means they might be wrong. Heaven forfend!
What frustrates me? Among other things, is how and why David Cameron, Andrew Lansley and Ian Duncan Smith assume they know what is best for me. Empathy hasn't yet been shown by any of them. They also seem to know what must be done for countless others who can not work because of, frankly, rubbish health - be it temporary, chronic or permanent - or disability. How do they know what I need to do? Have they read my medical files? I haven't. Despite trying to make me feel it, it's not my fault I am unwell. Why do they seem to try to make me feel guilty, punish me, insult me because of my health?
I've noticed some curiously suggestive language being used by Cameron and his crew. That people who are paid benefits “earn” that money. That people who are paid benefits ought to start “paying back society”. That those who pay tax ought to be riled at others being paid benefits. How dare they take money they are entitled to?! It's a shrewd and somewhat cruel effort, by my reckoning, to (attempt to) mildly brainwash and affect people's independent thoughts by continually churning out the same, old patronising “you deserve better” line, while “they” should stop being a burden on you, the hard-working person. Ignorance does, indeed, breed hatred.
Never, more than of late, have I felt so sidelined, so belittled, so very offended by that notion that I should feel guilt at my situation. I don't feel guilty, and no number of derisive words from ignorant people will change that. I did not ask for this to happen to me. I did not want to have to take medication every day to ease the physical pains, the emotional imbalances that affect my days. My mental breakdowns were no single person's fault, nor is my chronic physical pain. I don't blame anyone for what's happened to me; I do, though, blame the medical people for what I see as incompetence, those who were meant to help me but didn't, dismissing my pain as normal or insignificant or psychological, thus delaying the necessary and correct treatment. In turn, this has meant more damage has been done to my insides, which means I need stronger painkillers, and my options of treatments are limited. I've had 2 laparoscopic operations, and have had more pain since the second. This has and will cost the NHS more money, surely, with my constant need for medication.
My problems are endometriosis and depression. The only job I have had is a paper-round, delivering a weekday local newspaper and collecting the money at the end of the week. The round took about 45 minutes on Mondays, Tuesdays and Wednesdays, and about 1 hour and 20 minutes on Thursdays and Fridays. I liked a lot of the customers I delivered to, some became friends, some I could not tolerate, and others were almost never seen. I did well at Christmas: some customers gave me £20, others a couple. Often, my tips totalled up to over £200 at that time of year. None of them had to give me money, but they did so because they were nice, they appreciated my time, my kindness, and my consideration. I'm nice like that. And modest. Obviously.
Crucial to my mentioning this oft-lonely job of mine is that I could not even do that as I should have been able. Periods. Always the periods. Then, as now, they rendered me unable to walk, instead causing me to rely on my Mum to help me get to the toilet, to bring me my tablets, to get me up the stairs to bed, to sit up to eat. She stays with me to hold me while the pain rips me apart, burning me inside with unforgiving and inexorable cruelty. On the average worst 2 days of a period, I'll take about 45 tablets in all. Certainly at least 20 a day, and that only includes the painkillers. I'll have 8 each of 30mg dihydrocodeine and paracetamol, 3 of the anti-inflammatory dexketoprofen, 1 Omeprazole capsule to stop my stomach bleeding in interaction with my anti-depressant, which is a daily 40mg Citalopram tablet, plus, a fair measure of Lactulose to try to counteract all that codeine. A lot of medication, and all (but one tablet) because of endometriosis. It doesn't help the whole big awkwardness that my periods are irregular. So, your guess is as good as mine regarding when they will start.
Today, for instance, is 3 weeks since the last one started, and I was on the kitchen floor with period pain. I am wiped out for the best part of a week.
Most days now, I have to take 2 or 3 doses of the 30/500mg co-codamol because the headaches and pelvic and ovary pains are not tolerable without relief for me. Every dose makes me at least a bit tired and, depending on what my hormones are doing, I may be drowsy to the point at which I fall asleep. I have stiffness in my lower back and knees, and can't stand for a long time or walk for too far a distance without stopping, crouching down to stretch my legs and back. It hurts, basically.
I wake in the mornings feeling sick, and almost always with a headache. I find it hard to concentrate and remember what I have to do around the house, so must write down my goals for the day. When I am able, I load the washing machine and tumble dryer, iron clothes, wash up, load and unload the dishwasher, clean the cats' trays. It's not all go go go. I need to sit down, I need to “rest” between things. I may have a burst of that energy stuff and decide I can manage the trays, the washing, and the kitchen sink and make a cup of tea for Ma and me. Then I'll sit. And stay sitting. And feel tired again.
I don't do even a fifth of what I feel I should at home. I like my good days. I can do things I meant to do before, yesterday, last week, but hadn't felt able. (This is where the spoon theory becomes impossibly useful. If you don’t know it, please read up on it. It explains it all so well.) The mental list of things I want to do is longer than I care to think. It would be longer still, but I keep forgetting to add to it. And where I put it.
Visiting shops and walking about for even a short while can hurt me. I don't go out every day. I don't make a fuss or go on about my pains but I do try to ensure people know it's not fleeting, a day out will mean a lot of rest will be required. Chronic fatigue is not fun. Pain, of one kind or some others, is present all the time. I live it and get through it and suffer and take it because that's what people do. I'm not special, I'm not asking or expecting to be treated with cotton wool gloves, I'm not suggesting I'm wonderful or heroic or brave. Because I'm clearly not. It's not great to be living like this but I know, so well, it could be a hell of a lot worse. Perhaps, if you saw me walking around Sainsbury's or Lidl or buying a newspaper, you may well wonder why I am paid income support. Because, mostly, I look OK. I'm not well. I'm just not.
I don't claim incapacity benefit; I'm not eligible.
I don't claim housing benefit; I'm not eligible.
I don't claim Disability Living Allowance; I'm not eligible.
I don't claim tax credits; I'm not eligible.
I know people who have worse times than I, people who have to live a life knowing they won't get better, people who can not walk, people who can not find anything to help the, feel even slightly improved. I'd never suggest that my endometriosis is the worst in the world, or the worst amongst my friends. Some of those friends work, some have to use every bit of strength to get through days and look after families, some I admire more than my words could ever express. I've "lost" friends because of all this. I don't miss them one bit, thankfully, since they have disclosed their embarrassing ignorance and baseless assumptions without effort to rectify. I really am better without those who think I'm laying it on a bit thick for their liking, or craving attention, or whatever else those buffoons would like to think.
For me, though, working outside of my home is not an option. I worked so hard at college, through periods of hell, depression blackening my soul for days and weeks and month. Anxiety caused me to shake and retch at the thought of getting to and staying at a place which contained so many things I utterly adore – Art materials, books, people. Hormones. Real, genuine, actual problems because of hormones. I want to use my talents as an Artist to earn my OWN money. I don't want people to pay for me, look after me, and be my chaperone. But it is that way and it won't change. It's not negativity; it's realism. I want to sell my work - my drawings, take commissions, and paint garden birds in watercolours. I want to use MY money to buy my own sanitary towels, my own socks, and my own hair grips to replace the others that bent too much to use any more.
Will I be given permission to live my life the best way it can be lived? I'm waiting for the response to the benefits form, which I filled in a few weeks ago. I really don't know what they'll say. Even if I did manage to create some work to sell, it would take a while to do. I'd need to pay for prints of my Hendrix picture, and they're not altogether cheap to have done. But they do look fabulous.
I don't want luxuries, I'm not greedy, I don't want innumerable possessions, I don't want holidays abroad every 6 months; I just want a better life than the one I have. That's not bad, that's not shameful, and it's not snobbery. My life is hard work just to get through days like today. Which decent person doesn't deserve a fulfilled life? Why shouldn't anybody? It's not wrong to want better, if what you have is not good enough, less than decent or reasonable. I've heard so many people state quite clearly they disagree with benefits. But which? If you don't inform well enough, the ignorant people among us will choose an opinion, if they've not already been told what to think, and disregard the possibility that there are, in our amazing country, those who must be helped. "Damn the needy!" Why? Damn the people who don't work!" What, every person who does not work? Those who can not work? The genuinely lazy barks who just can't be bothered? Please, say what you mean and use facts as a basis for it, rather than regurgitate the same, boring, copy-and-pasted spew that doesn't MEAN anything? Please? WHY do you think what you think?
I know some people work exceptionally hard. I know this, because my family has done so for so long. They've suffered. We've suffered. I know what a lack of money is. We were looked after superbly and provided for, but we went without, as children, in order to eat. We never went abroad for holidays. We never went out to restaurants or parties, we had furniture that lasted for years until it fell apart, the carpets until there were bare patches, clothes until they could not be repaired in they would still fit. I don't know poverty, as my grandparents did (and they truly did) but I know what going without means. I am not spoilt, I have realistic expectations of people, and I have no desire to get all I can and damn everyone else. I'm not a scrounger.
My desires relate to health, pain relief, days when I'm free from the fear of pain, my own mind's relapses, whereby I work to my abilities, and within my physical limits. I will not risk my health to be what this unkind government wants me to be. Money does not stop pain hurting. Money in the form of income support doesn't make me happy, it doesn't stop my mind entering the bleak world of the black dog and thunderous skies and odious misery where nothing lights the way, and no-one offers a sign of any chance of a path out of this shithole. Money, which I would earn, would not do the same, either, of course; though, it would be money from my work. That counts for something. It must do.
“Surviving”, as Cameron indelicately puts it, and getting by might be good enough for his way of thinking for others, but it doesn't wash with me. People deserve better. I've survived enough with endometriosis and depression and I will not fall in to the trap of believing my life is my fault.
I have no bitterness about people who are comfortable, financially. I feel anger about pointless and stubborn reluctance to think another way, to accept the possibility that, maybe, what some people see is only what they want to see because the truth is not preferable. It means they might be wrong. Heaven forfend!
What frustrates me? Among other things, is how and why David Cameron, Andrew Lansley and Ian Duncan Smith assume they know what is best for me. Empathy hasn't yet been shown by any of them. They also seem to know what must be done for countless others who can not work because of, frankly, rubbish health - be it temporary, chronic or permanent - or disability. How do they know what I need to do? Have they read my medical files? I haven't. Despite trying to make me feel it, it's not my fault I am unwell. Why do they seem to try to make me feel guilty, punish me, insult me because of my health?
I've noticed some curiously suggestive language being used by Cameron and his crew. That people who are paid benefits “earn” that money. That people who are paid benefits ought to start “paying back society”. That those who pay tax ought to be riled at others being paid benefits. How dare they take money they are entitled to?! It's a shrewd and somewhat cruel effort, by my reckoning, to (attempt to) mildly brainwash and affect people's independent thoughts by continually churning out the same, old patronising “you deserve better” line, while “they” should stop being a burden on you, the hard-working person. Ignorance does, indeed, breed hatred.
Never, more than of late, have I felt so sidelined, so belittled, so very offended by that notion that I should feel guilt at my situation. I don't feel guilty, and no number of derisive words from ignorant people will change that. I did not ask for this to happen to me. I did not want to have to take medication every day to ease the physical pains, the emotional imbalances that affect my days. My mental breakdowns were no single person's fault, nor is my chronic physical pain. I don't blame anyone for what's happened to me; I do, though, blame the medical people for what I see as incompetence, those who were meant to help me but didn't, dismissing my pain as normal or insignificant or psychological, thus delaying the necessary and correct treatment. In turn, this has meant more damage has been done to my insides, which means I need stronger painkillers, and my options of treatments are limited. I've had 2 laparoscopic operations, and have had more pain since the second. This has and will cost the NHS more money, surely, with my constant need for medication.
My problems are endometriosis and depression. The only job I have had is a paper-round, delivering a weekday local newspaper and collecting the money at the end of the week. The round took about 45 minutes on Mondays, Tuesdays and Wednesdays, and about 1 hour and 20 minutes on Thursdays and Fridays. I liked a lot of the customers I delivered to, some became friends, some I could not tolerate, and others were almost never seen. I did well at Christmas: some customers gave me £20, others a couple. Often, my tips totalled up to over £200 at that time of year. None of them had to give me money, but they did so because they were nice, they appreciated my time, my kindness, and my consideration. I'm nice like that. And modest. Obviously.
Crucial to my mentioning this oft-lonely job of mine is that I could not even do that as I should have been able. Periods. Always the periods. Then, as now, they rendered me unable to walk, instead causing me to rely on my Mum to help me get to the toilet, to bring me my tablets, to get me up the stairs to bed, to sit up to eat. She stays with me to hold me while the pain rips me apart, burning me inside with unforgiving and inexorable cruelty. On the average worst 2 days of a period, I'll take about 45 tablets in all. Certainly at least 20 a day, and that only includes the painkillers. I'll have 8 each of 30mg dihydrocodeine and paracetamol, 3 of the anti-inflammatory dexketoprofen, 1 Omeprazole capsule to stop my stomach bleeding in interaction with my anti-depressant, which is a daily 40mg Citalopram tablet, plus, a fair measure of Lactulose to try to counteract all that codeine. A lot of medication, and all (but one tablet) because of endometriosis. It doesn't help the whole big awkwardness that my periods are irregular. So, your guess is as good as mine regarding when they will start.
Today, for instance, is 3 weeks since the last one started, and I was on the kitchen floor with period pain. I am wiped out for the best part of a week.
Most days now, I have to take 2 or 3 doses of the 30/500mg co-codamol because the headaches and pelvic and ovary pains are not tolerable without relief for me. Every dose makes me at least a bit tired and, depending on what my hormones are doing, I may be drowsy to the point at which I fall asleep. I have stiffness in my lower back and knees, and can't stand for a long time or walk for too far a distance without stopping, crouching down to stretch my legs and back. It hurts, basically.
I wake in the mornings feeling sick, and almost always with a headache. I find it hard to concentrate and remember what I have to do around the house, so must write down my goals for the day. When I am able, I load the washing machine and tumble dryer, iron clothes, wash up, load and unload the dishwasher, clean the cats' trays. It's not all go go go. I need to sit down, I need to “rest” between things. I may have a burst of that energy stuff and decide I can manage the trays, the washing, and the kitchen sink and make a cup of tea for Ma and me. Then I'll sit. And stay sitting. And feel tired again.
I don't do even a fifth of what I feel I should at home. I like my good days. I can do things I meant to do before, yesterday, last week, but hadn't felt able. (This is where the spoon theory becomes impossibly useful. If you don’t know it, please read up on it. It explains it all so well.) The mental list of things I want to do is longer than I care to think. It would be longer still, but I keep forgetting to add to it. And where I put it.
Visiting shops and walking about for even a short while can hurt me. I don't go out every day. I don't make a fuss or go on about my pains but I do try to ensure people know it's not fleeting, a day out will mean a lot of rest will be required. Chronic fatigue is not fun. Pain, of one kind or some others, is present all the time. I live it and get through it and suffer and take it because that's what people do. I'm not special, I'm not asking or expecting to be treated with cotton wool gloves, I'm not suggesting I'm wonderful or heroic or brave. Because I'm clearly not. It's not great to be living like this but I know, so well, it could be a hell of a lot worse. Perhaps, if you saw me walking around Sainsbury's or Lidl or buying a newspaper, you may well wonder why I am paid income support. Because, mostly, I look OK. I'm not well. I'm just not.
I don't claim incapacity benefit; I'm not eligible.
I don't claim housing benefit; I'm not eligible.
I don't claim Disability Living Allowance; I'm not eligible.
I don't claim tax credits; I'm not eligible.
I know people who have worse times than I, people who have to live a life knowing they won't get better, people who can not walk, people who can not find anything to help the, feel even slightly improved. I'd never suggest that my endometriosis is the worst in the world, or the worst amongst my friends. Some of those friends work, some have to use every bit of strength to get through days and look after families, some I admire more than my words could ever express. I've "lost" friends because of all this. I don't miss them one bit, thankfully, since they have disclosed their embarrassing ignorance and baseless assumptions without effort to rectify. I really am better without those who think I'm laying it on a bit thick for their liking, or craving attention, or whatever else those buffoons would like to think.
For me, though, working outside of my home is not an option. I worked so hard at college, through periods of hell, depression blackening my soul for days and weeks and month. Anxiety caused me to shake and retch at the thought of getting to and staying at a place which contained so many things I utterly adore – Art materials, books, people. Hormones. Real, genuine, actual problems because of hormones. I want to use my talents as an Artist to earn my OWN money. I don't want people to pay for me, look after me, and be my chaperone. But it is that way and it won't change. It's not negativity; it's realism. I want to sell my work - my drawings, take commissions, and paint garden birds in watercolours. I want to use MY money to buy my own sanitary towels, my own socks, and my own hair grips to replace the others that bent too much to use any more.
Will I be given permission to live my life the best way it can be lived? I'm waiting for the response to the benefits form, which I filled in a few weeks ago. I really don't know what they'll say. Even if I did manage to create some work to sell, it would take a while to do. I'd need to pay for prints of my Hendrix picture, and they're not altogether cheap to have done. But they do look fabulous.
I don't want luxuries, I'm not greedy, I don't want innumerable possessions, I don't want holidays abroad every 6 months; I just want a better life than the one I have. That's not bad, that's not shameful, and it's not snobbery. My life is hard work just to get through days like today. Which decent person doesn't deserve a fulfilled life? Why shouldn't anybody? It's not wrong to want better, if what you have is not good enough, less than decent or reasonable. I've heard so many people state quite clearly they disagree with benefits. But which? If you don't inform well enough, the ignorant people among us will choose an opinion, if they've not already been told what to think, and disregard the possibility that there are, in our amazing country, those who must be helped. "Damn the needy!" Why? Damn the people who don't work!" What, every person who does not work? Those who can not work? The genuinely lazy barks who just can't be bothered? Please, say what you mean and use facts as a basis for it, rather than regurgitate the same, boring, copy-and-pasted spew that doesn't MEAN anything? Please? WHY do you think what you think?
I know some people work exceptionally hard. I know this, because my family has done so for so long. They've suffered. We've suffered. I know what a lack of money is. We were looked after superbly and provided for, but we went without, as children, in order to eat. We never went abroad for holidays. We never went out to restaurants or parties, we had furniture that lasted for years until it fell apart, the carpets until there were bare patches, clothes until they could not be repaired in they would still fit. I don't know poverty, as my grandparents did (and they truly did) but I know what going without means. I am not spoilt, I have realistic expectations of people, and I have no desire to get all I can and damn everyone else. I'm not a scrounger.
My desires relate to health, pain relief, days when I'm free from the fear of pain, my own mind's relapses, whereby I work to my abilities, and within my physical limits. I will not risk my health to be what this unkind government wants me to be. Money does not stop pain hurting. Money in the form of income support doesn't make me happy, it doesn't stop my mind entering the bleak world of the black dog and thunderous skies and odious misery where nothing lights the way, and no-one offers a sign of any chance of a path out of this shithole. Money, which I would earn, would not do the same, either, of course; though, it would be money from my work. That counts for something. It must do.
“Surviving”, as Cameron indelicately puts it, and getting by might be good enough for his way of thinking for others, but it doesn't wash with me. People deserve better. I've survived enough with endometriosis and depression and I will not fall in to the trap of believing my life is my fault.
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...
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.
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.
Monday, 26 September 2011
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