Sunday, 11 March 2012

Floodway Thursday

The postwoman deposited our mail through our letterbox, which clunked shut with satisfying certainty. While I lay in a daze on the sofa, my Dad placed in my hands the brown envelope containing the letter for which I had been waiting and dreading in equal measure. By that point in the day, the usual devastating inner
woe had eased enough for me to release my coarsely knitted brow and cease shaking all over. The Keral had alleviated the inflammation, and the dihydrocodeine had blocked the pain signals with its tiny but rather effective barriers and signs saying, "NO ENTRY, MUTHAS!".

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

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

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


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

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


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

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




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

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

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

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

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


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

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

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

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













3 comments:

  1. Really glad you've got ESA - not only for yourself and your parents, but also to show other endo sufferers that there is help out there, albeit hard to get!

    Chin up xxxxxx

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  2. I find it ironic that the pain scale was developed by a endo sufferer yet when we say our pain is a 7,8,9 we are oftern not believed and re told it's just cramps. The last paragraph made me cry because I have a toddler and my worst fear is her having endo/adneo/pcos like her mama. Keep up the good work spreading the awareness!

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  3. well done hunnie you have nailed it right on the spot it to me 4 years to finally be heard by professionals i was in and out of hospitals doctors everyday it got worse to the point my partner had to give up work look after me as i could hadly move everyone just looked at me like it was all in my head and it made me fill like i was going crazy but like i said well done the more people know about this condition the better and the longer you leave it the worse it gets and the more it affects and causes other parts of your body for example pcos,dpv parts sticking together and problems with your bones hip back and lumber spine.
    it has also been proven that endo can be found in the brain on the lugs everywhere
    xxxxxxxxxxxxxxx

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