Monday 3 December 2012

Suicidal due to endometriosis - an open letter to BBC health correspondents.

Dear all,

Please excuse the group addressing if this email. I contacted you a fair while ago about endometriosis, asking if you would consider covering it, showing how utterly devastatingand soul-destroying it can be. The awareness weeks are always in March.

Three weeks ago today (Monday 3rd December), I put myself through a traumatic injection of Noristerat; I nearly passed out while feeling the jelly-like substance slowly make its way in to my muscle. At the same time, I was terrified that my nightmare of depression and bleak pointlessness because of hormones b
eing artificially altered would return.

I told my consultant this would happen. My taking of the anti-depressant, Duloxetine, is not enough to keep my mind balanced. I haven't bled since the injection, and am not likely to for months but this break from my horrific periods means nothing, just as I said would be the case.
Over and over, I literally beg for help, pleading for something to change. Nothing helps. The pain is constant. Not even a second passes without something in my pelvis hurting, regardless of painkillers (dihydrocodeine).

Yesterday, in the week leading up to what would be (possibly, for my periods are irregular) my premenstrual days, all the bitterness, cruelty, anger, and bile erupted in a sobfest, with me wondering what the point of all of this is.

All the treatments I've tried do not work. Surgeries have lessened the pain ad made periods slightly more bearable for several months but, inevitably, they always, always return to their established torture. Tramadol was a fleeting option, ceased when I developed the initial symptoms of serotonin syndrome. Even a hysterectomy and/or oophorectomy are not guarantees of a painfree life. I may already be infertile. I may never have a chance to find out, if I opt to have the whole cursed lot taken away.

I've just turned 31. I can't work. My Mum is my carer when I am ill with a period. There is no hope of improvement, nor of change, nor of reason to keep doing this. That's how I felt yesterday. Death felt like the only answer, the only action to stop all this happening. Not for the first time, my consultant didn't listen to me when I said this would happen. The angry part of me blames him for this happening, blames him for not seeming to realise I can not indefinitely go through treatments with vague hopes there will be a slight improvement. I can not carry on hoping something will help. What's the point? Why? Nothing changes.

Some people assume it's just a period, idiotic arrogance causes them to tell us to stop moaning, to stop seeking attention, that we are weak and simply not trying hard enough. They don't have the slightest understanding, no sympathy, no empathy.

Please, I beg you, bring the dark world and hopelessness and pure fear of endometriosis and its often horrendous treatments to the attention of people. There are at least two million women in our country with endometriosis. Two million people. Many of them are treated with contempt by others because of lack of knowledge and kindnes. Not every woman suffers terribly, not every woman will be unable to have children, and not every woman will welcome her own demise as the way out after trying so hard to carry on through endless and often silent agony.

Today, I don't want to die. Today, I want to bake cakes using the recipe birthday card and teacupcakes from my lovely friend, Mark. Today, I might begin to crochet something from my Stitch 'n' Bitch book. Today, I might watch more of my beloved Attenborough show me the world I may never see.

Please help people understand how frightening hormones and incurable diseases and ovaries and periods can be. Please report on it. I don't mean to suggest I ought to be the subject but please, just do SOMETHING to help this awful, horrible, devastating thing become more known about, more public, more understood. Please.


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Wednesday 3 October 2012

Reviewing my options.

It's a little over two whole years since my first laparoscopy, and it'd been hoped that the pains I had before it would not reoccur as soon as they have. "Oh, bugger", you might say. "FUCKING HELLFIRE!" is what I said. Hardly different.

I've been given Tramadol by my GP for the bad, terrible, awful pain - which says "hello" rather abruptly and burningly - for two or three days. So that's nice. How will I feel when I take them? Much different to how I feel right now, two hours after taking yet another 60mg dose of dihydrocodeine? Will I feel very sleepy and groggy, and will I be so incoherent and bleurgh, that even My Amazing Mum won't be able to understand my side of our Endo Pain Code? I know some people who have taken it after an accident or surgery or something very painful have been utterly wiped out by it, but I think they've not had any strong (by my standards, anyway) painkillers, so maybe they're just lightweights. FNAR.

I've never felt so grim. Honestly. I mean, I'm not so depressed, thanks mainly to the Duloxetine and other stuff, but the situation is so... dire. The first thing I think about when I wake up in the morning is no longer tea, or breakfast, or why I can't move my feet (cat on bed); it's about what dose of painkillers will I have to take. And isn't that just the way not to live? Of course, I know, I KNOW other people have a far worse time than I, but - ahh, a "but" - this is all I know. And it's a bit shit. I've not written on here because I've felt so rubbish. So fatigued. So heavy. So... *shrugs*

I've written reviews for things and stuff on Ciao, a site where people can post reviews (SHOCKER) about almost anything, really. Shortish reviews, small windows of concentration, interesting topics. It's been about enough for me to do. Just the right amount.

I've not been exercising as I should, owing to the pains and the grogginess from the tablets, which is not helpful at all because then I feel stiffer and more pained and more achy, and it goes round and round. AND I'M FED UP. Poor me, etc.. But with all my crapness going on, Mum's got to have two operations very soon, and she's STILL helping me off the floor, getting my tablets, making me tea, doing my hot water bottles. How does she do it? How do I not do it? Why can I not do what she does and help more? Saying that, I did have a marvellous few days where I halved the ironing mountain! Mostly my clothes... I had forgotten I had many of them.

Depo-Provera - a 12-weekly contraceptive injection - has been struck off my list of treatments to try to relieve me of my incessant pains, likewise the 8-weekly contraceptive injection, Noristerat. I hadn't realised the latter's magic ingredient is a progestegin, a synthetic progesterone, and that's a bastard what gave me hell when I was on the pill. And the mini-pill. Even though it was a hormone treatment, the Decapeptyl SR (triptorelin) lessened the oestrogen, rather than add to the progesterone.
True, the Duloxetine has worked very well for my emotional and mental state, but what if it's not enough? How would I cope with eight weeks of depression? I wouldn't be able to stop feeling that dark, thunderous gloom from ruining my horizon, in all and any direction. Can I do that? Can I? Of course my pains are bad, of course they are. But how... how do I... how can I do that? Again? I just can't.

*Sighs an enormous sigh*

Oh, reader. Endometriosis is the only impossible thing in my life. I just do not know what to do. I miss my friends. I miss my lovely people. Some think I let them down on purpose, think I ignore them, forget with malice or disregard. None of it could be more false. I miss going OUT to see people, I miss walking to the shops, I miss sitting in the garden and digging out those weeds, taking photos of pollen. So much gets left behind when pain relief is all that becomes important.

I'm not sure there's even a point to this blog post. I suppose I felt I should write a bit, update a bit, show you I'm still here. So, here I am. And here I go. Time for tea and lunch. And tea. And something Doctor.

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Thursday 16 August 2012


The cool, refreshing breeze gently moved my messily-plaited hair, as I sat by the open window in the waiting room before I saw my pain psychologist. The lavender in the pretty garden just a few metres away provided a perfect view to gaze upon. The scent from the bobbing flowers found their way up my hayfeverishly stuffed-up nostrils. Bob Marley sang "I don't want to wait in vain" on the radio. It wasn't long before I was called in to my appointment on, somewhat amusingly, the first anniversary of my second laparoscopy.

I don't honestly feel that much has changed since that day. A positive aspect is that my periods seem to be more likely to start nearer to the 4 week mark than the 5 week mark. But even that is still not a certainty, so planning is, still, an awkward thing.

When I registered to take part in the 5k Big Fun Run in Crystal Palace, I didn't know if I would be well enough to attend, let alone travel for a couple of hours, walk the distance, then travel another couple of hours. Despite the roller-coaster excitement of not knowing whether I'll be ill from the effects of endometriosis-plagued periods, and having no choice but to let people down, I continue to believe that is still better - and healthier for the mind, or mine, at least - to plan to go out, see people, arrange to be a part of a brilliant fund-raising event like the aforementioned trek amid a dinosaur-fest.


This time, like countless others, I won't be there, at the intended destination. I know when that Saturday comes along, that I shall either be heavily medicated and in a lot of pain, while fatigue renders me immovable without assistance, OR I shall be just entering the recovery stage after that period has passed its worst phase.

Either way, I shall be at my worst time of the "month" and, even if I'm able to shuffle along and not use my walking stick, the energy and effort - or spoons - will be far too much for me to manage. I will make myself ill. I can't do that.

I promise you, if you've already sponsored me, I will walk that 5k distance; it won't be in London, but local to my home. I've yet to map out a route but I'm fairly sure I know where I want to go. And I have an idea of who to drag along with me. Although, they don't know it yet...

I'm still a long way off my target, and I'm quite concerned I'm not going to get there. If you would like to sponsor me to help Endometriosis UK, you will help me, and women like me all across the United Kingdom, people you don't even know exist, people you walk by every day. Endometriosis is closer than you might think.

I feel wretched about having to abstain from this event, as it would've been the third consecutive year I'd've gone to London to complete a 5k for Endometriosis UK. The distance, wherever I do it, will be painful for me. Walking, now, is never without a pain or ache or twinge of some kind at some point. I'm not complaining; rather, letting you know (if you hadn't already suffered me enough) that my pain is chronic in its varying forms. I am still exercising, as advised by my hospital pain management team but that only does so much. It can't cure the pains. Nothing can.

So, PLEASE, if you can help, please do! AND, if you buy any item from my lovely, shiny, new shop on Etsy - which is >>> HERE <<< - I'll donate that money to my fund-raising page, which is >>> HERE <<<

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Saturday 28 July 2012

Etsy Supplements Artist?

By law, I'm allowed to earn up to £95 per week while I'm paid ESA (Employment and Support Allowance) by the government. Ideally, I'd not claim anything from "The State" but, I am one of those human things with chronically life-altering health troubles, and I do have to live. And living does, for me, cost some money.

Lately, I've done what I feared I would not be able to do: I have done Art. What if I couldn't draw now? What if I couldn't mix paints or understand shape or form or interpretations or... It was all piffle.
I sketched some drawings on the paper I missed turning and feeling, with the graphite pencils I missed smudging and sharpening, and the sizing-up with my thumb like those Art types do on the telly. (It's an actual thing to do, y'know.) I made a card for a friend, and used my watercolour paints. I'd forgotten about all the things I'd need: jar, water, newspaper, paper towel, hardboard... I enjoyed it so much. When I started the initial sketching the day before the painting, I was thrown right back to the researching lark of something, finding images, reading about the subject, to understand what it was and how it would be done and more things and such.

I was quite pleased with the end result. Even if I hadn't been, I'm sure it's the act of having actually done the Art thing again which was the point. It was breaking down that imaginary wall which stopped me doing creative things earlier. Or was it my own doing? I suspect it was, indeed, me who stopped things progressing, partly because of that fear. But it's also not my "fault" so, I'm not angry with myself for halting or preventing the drawing happening, because it's all been for a reason mostly out of my control. That reason is, of course, endometriosis. And depression. Two reasons: endometriosis and depression. I'll come in, again...

(If you're not sure what endometriosis is, you can click THESE BIG LETTERS to find out more about it as well as my favourite charity, Endometriosis UK. It's for them that I am doing my third 5k walky thing in September, with details HERE, should you wish to be exceedingly generous and sponsor me for what WILL be another very painful, difficult but, ultimately, worthwhile event. Endometriosis UK has changed my life and made it better. Please help it carry on doing the same for countless other women and girls?)

So, now I've started the Art thing again, what can I actually do? I knew about Etsy a while ago, and didn't think I'd bother with it. Then I did. And I've just added some of my drawings and bird paintings from a few years ago, which you can see by clicking HERE.

I'd like to get more Jimi Hendrix prints done, to paint more birds (if I can hold them down long enough), to draw more dogs, cats, and horses. I miss doing what I essentially trained to do for about six years. Although, it was meant to be half that time, really but, once more, the unrelenting pain of a then-undiagnosed incurable disease and dark place of my depressed mind held me back. That desire to create something from bits and pieces, from materials, using various media has never left me. At times, though, there's not enough energy in my whole being to even attempt it. And that lack of anything is down to the conditions I have, as well as the myriad medications I have to take each day to live what might be termed a "decent life". Some days have been and are less than decent, being, as they are, utter shit. The days where not being around felt like a better option, or the days when the strongest of strong painkillers I am permitted to take will not release me from the grip of agony. They're the not-so-good days. Obviously. (I don't have suicidal thoughts these days, in case you wondered.)

Of course. I'm hoping you'll sponsor my 5k and, of course, I'm hoping equally as much that you'll buy something I've created but, if the only thing you're able to do is share this blog in some way, you will be helping me more than you know.

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Wednesday 27 June 2012

Sod off, MURPHY.

The last thing I expected to happen with this post was for it to become the most read post on my entire blog. Ever. Of all time. Ever. It was all because I asked people on twitter to help me after it became clearer than the Crystal Maze that SOMEONE had taken my money by deception, when claiming to want to help me raise money for my Mission to Tell Cancer to Sod Off. Also known as #SodOffCancer on twitter...
I can not overstate how amazing people were on twitter that day, how kind their words were, how enraged they felt on my behalf for the gall and cruelty and heartlessness of what this person did. Each retweet was so gratefully seen by me, and I thank each person so very much, with very special specialness to @MargoJMilne, @fiatpanda, and @EssexPoliceUK for their super-speedy help and guidance over what I should do. The "should do" has become a "have done", and there's no more I can actively do, with regards to the reporting to and telling police what I know.

I wondered if I could retrieve any of the MSN Messenger conversations that person and I had had. I hoped so much I could find the info there. My hopes were enough, it seems, for here they are, on my laptop. The entire - THE ENTIRE - log of conversations. Here are some gems of his numerous claims:

"Tomorrow at the 'Casualty' set in Bristol and weekend - no idea yet" - after I asked him on 24th September 2009 if he would have a busy Friday.

"i have been given a pack of 10 first class return rail tickets for anywhere on the Virgin, National Express or East Midlands Trains rail network which you can have for your charity auctions, plus a load of stuff from Doctor Who, Torchwood, Casualty, Holby City and, thanks to Teignbridge District Council, a sponsorship message on a roundabout between Teignmouth and Newton Abbott", "my other half has just said that he’ll throw in a free meal for a family at the Mount Pleasant Arms in Dawlish Warren and a £50 bar tab too (Dawlish Warren is in South Devon), and "Craig said that he’ll turn it into a weekend break at the hotel with breakfast and meals for a family of four" - after I asked him for news about the box of stuff, on 3rd October 2009.

And look! Here are the snapshots from the facebook messages stating much the same:

On 11th November 2009, he informed me "i work for ofcom so can do it internally" when talking about Doctor Who when he thought Martha had said the word "fuck". "OFCOM Telephone Rule 3.2 Ss8" apparently. And, how exciting! The next day he would be up early. But why? This: "get the pre-records ready for GMTV tomorrow morning - it's coming from Manchester for the first time (although they won't mention that on screen!) ... just getting the set up, studio ready and some early morming incerts ... and gotta do the edits for it too ... shame we don't have credits: Executive Producer STEVEN MURPHY for TX MEDIA LTD and GMTV STUDIOS".

If you have a spare skip nearby, you might want to fill that with salt.

He'd been to the National Television Awards and blamed the Loose Women for being drunk.
He'd won a Mac from GMTV.
He was an executive producer for something or other and had a very important clipboard to make sure the programme complies with guidelines.
He was in hospital for a while and couldn't reply to me, being later diagnosed with Wolfe-Parkinson-White Syndrome, a heart condition.

Let's jump forward to 22nd April 2010 when I asked if the box will arrive any time soon, which prompted him to say "oh your big box of stuff will be with you on MONDAY - am posting it on Saturday before I go on my hols".


How about 10th September 2010? "i'll get it sorted for you on monday - sorry sorry sorry".

Luck is not on his side, for this is what happened on 22nd November 2010: "hey - sorry it's Marc his hubby - just checking his email - he's in hospital ... no he fell down the stairs at work and done his leg in".

Dear oh dear oh dear OH DEAR. And that was it. That was the last I heard or read from "Steven" or "Marc" or "Craig" or whoever the fuck Matthew Attenborough pretended to be.

It's been a long time since I listed the things I have been given and sent by lovely people, and the reason is, as ever, my own quite shitty health. My days aren't easy and they're not spent lazing about. When I feel OK, i do what I can. From my asking by writing begging letters for a signed card or some, I've pleaded and beggeded and have been sent signed postcards and photos by SO many (mainly Doctor Who and Harry Potter) people (or their people), including Hugh Bonneville, Karen Gillan, Matt Smith, Maggie Smith, June Whitfield, Bernard Cribbins, Tracy-Ann Oberman, Matilda Ziegler, Julia Sawalha, Michael Palin, Camille Coduri, Jessica Hynes, Sinead loads from Eastenders people, loads from Coronation Street people, and LOTS more people. I've been sent huge signed film posters, Doctor Who illustrations, signed books, signed records, signed CDs, and SO MUCH MORE.

A large chunk of the stuff has been given by those wonders @marshamusic and @shaunwkeaveny and I am SO thankful to them. I could squeeze them 'til the cows come home. And go away again. And come home again... as well as @LisaLynch, who gave me 2 of her books, which she'd signed, and they made LOTS of luvverly moolah for charity. Thank-you, Lisa!

I want to have two HUGE bundles each of Doctor Who and Harry Potter stuff - one for Macmillan Cancer Support, and the other for Cancer Research UK. Torchwood and The Sarah Jane Adventures things will probably be added to the Doctor Who stuff. Not sure yet.

I feel I must reiterate what I feel is one of the most important points of all this: I make absolutely no money from this. I don't want to. I started this because my Mum was diagnosed with breast cancer, and still suffers now, over 3 years since the horrible times began. All I ever wanted to do was get things, sell them on eBay 100% for the charities I chose, and know that those charities have benefitted.

In another blatant begging instance, if YOU have things you'd like to donate to my cause, if you want to help Tell Cancer TO SOD OFF, you can leave a comment on here, or email, or tweet me @TheCurlyLucy. It can take a long time for me to get round to doing things, but I get to them in the end. This is why things get bad, sometimes.


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Saturday 23 June 2012

Help Lucy help charity

Naivety isn't something any of us likes to admit to but I was when I started this fundraising lark. I had people sending me things, signed books, records, photos, CDs, posters. And there was someone who seemed so very helpful and eager to help. "Hooray!" I thought. Aren't people nice?

Yes, they are. They can also be turds who take money "for postage costs" with a promise of sending stuff from the BBC and ITV studios and signed cards and T-shirts for me to list on my eBay page to sell 100% for charity. If you're not aware of why I do this, I shall tell you: in 2009, my Mum was diagnosed with breast cancer and had a mastectomy. She's still having treatment and is still having a really bloody hard time.

I never sell my charity things to profit for myself, I never take any of the money. Every charity listing is 100% for that charity. The three I concentrate on are Macmillan Cancer Support,, Cancer Research UK, and Breast Cancer Care.

A man called Steven Murphy started talking to me on twitter, and, as the months went by, and we talked more, we talked on the phone. More months went by and trust was built, and (though I can curse myself endlessly now) I transferred £15 to his bank account to cover the amount it would cost as there was a lot and it was heavy. After being told he would then send the box of things, I waited. And I waited. And he was "ill". And I waited. And many obstacles occurred.

He used to use, but THAT IS NOT HIM NOW. It used to be Trafalgar Media.
He also seems to have used and
On the TwitPic site, he's here: Steven Murphy.
The website he said was his lived at TG:media, among other places.

If you wanted to search, I'm sure you find all this and more. While trying to find out more, I found this: a non-too complimentary view from others about much the same thing. He now says he's a POLICE OFFICER. In Cornwall.

Somewhat naturally, I am so annoyed with myself for transferring the money to his bank account from mine, and I still have his details, from that time, at least. Retrospect is a great thing, but it only ever comes along after an event. Obviously.

Without wanting to sound all politiciany, please let me explain that I absolutely do not want people to give me their money. I don't want anything other than him to give me back my money, an apology for lying, disappearing, and countless other words I can't think of right now. He is still on my facebook friends list - back after a vanishing for a few months - and there has not been ANY reply or contact of ANY kind for over a year. Possibly more. I don't now believe there ever was a box of things. Obvious now, isn't it?

If anyone can help or has advice or knows what I can do (please bear in mind I'm not wealthy, nor am I particularly well, nor do I want terrible things to happen to this person), please help me? I want what is right to happen to happen. I WANT MY MONEY BACK.

All I ever wanted to do was sell stuff for those charities. I never wanted to profit for myself, not a single shiny or dull penny. Please. Please, can you help?

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Thursday 21 June 2012

Crystal amazement

When I stayed in London for a weekend to attend Lisa Lynch's Super Sweet 30th birthday party, it was a marker for an impressive "independence" achievement for me, despite that independence being fleeting, much as it is now, three years later. It was also the start of a slow-burning desire to exercise more and try to feel better about myself. The party was on a Saturday and, on the Sunday, I went to Hyde Park to watch a couple of friends partake in the adidas Women's 5k Challenge. The atmosphere was thrilling! I'd not known what to expect, and was wholly delighted to see thousands of women raising money for myriad charities, a rainbow sea of T-shirts.

The next year, 2010, I walked and slowly ran my first sporting event, and raised money for Endometriosis UK. I surpassed my original target by hundreds, and was so overwhelmed by the generosity and kindness of people I'd never met, mostly via the wonder that is twitter.
The next year, which, coincidentally, was also last year (2011), would see me walk the same event, again raising money for Endometriosis UK.

Each event was also when I would meet friends I had, until those days, only "talked" to online, whether through facebook, twitter, or email, or by text or letters. Last year's 5k run [walk] was about 5 weeks after my second laparoscopy, which made it very hard for me to do any training, and walking the distance proved to be incredibly hard for me, with both legs, ankles and feet feeling as though they were burning after only 2 kilometres. But I carried on *FANFARE* and it was so lovely. People cheered all the way round no matter the charity they were supporting. I wore my Endometriosis UK T-shirt with such pride, and grinned and waved at those also supporting them. It's a wonderful, satisfying feeling being part of something like that; I only wish I'd been able to run, like I had planned.

Typically, the endometriosis pains and fatigue disrupted my plans. Additionally, I was having considerable problems with codeine in the 2 or 3 months prior to my laparoscopy; the withdrawal symptoms relating to the codeine I wasn't having to take were because of minimal pain, due to having the 4-weekly injections of Decapeptyl SR. The intermission in the pain calendar was extremely welcome, although the ills I felt from the lack of codeine in my system, having had quite a lot of the stuff every day for months, were far less welcome. They were not welcome. They were not invited to dinner but they stayed, anyway. A super-lovely GP and I worked out a tapering plan to ensure I suffered minimal symptoms while very slowly reducing the amount of codeine I took each day.

With the days sporadically becoming warmer and brighter, and with the knowledge that the adidas Women's 5k Challenge would not happen this year due to the Olympics, I wondered if I could again raise money for Endometriosis UK by taking part in a not-too-strenuous-but-equally-not-easy-in-any-way event type thing. And lo! It was here that I did discover that THIS EXCITING EVENT was happening! And so, dear readers, you lovely, generous, caring and kind readers, I have registered to complete the 5 kilometres Big Fun Run course in Crystal Palace Park on Saturday 8th September 2012.


I've been slowly getting fitter, little by little, and I feel improved even walking round my house, up the familiar stairs, getting up from the sofa, and making tea. It might all seem like not much, but when there are so few moments with not pain, it's a HUGE change. The fitness classes at hospital have been fun, even though I've so far only attended half, with thanks going to unwellness caused by a period, a virus, and another sinus infection. I haven't wanted to miss those classes, but, as you may well know by now if you've read this blog before, when a period arrives, it's all about the period. The Duloxetine is still working well, the pains are less bad, and the periods are less bad, albeit still very significantly ouchy.

I want to do this 5k and I want to do it well. I want YOU LOT to help my beloved and wonderful and TINY Endometriosis UK continue to be funded, so that it may help those frightened, desperate and terribly-affected girls and women come to terms with this most cruel of conditions, to better live their lives, and to feel properly supported by people who truly understand what endometriosis means.

As with the previous events, this is not going to be easy for me to do. It may be less painful to walk, but it will hurt me. This truly, honestly is going to be a challenge for me. An early morning, several train journeys to get to Crystal Palace Park, the event itself, the walking and the trains back home, and the realisation of what I've done will all take their toll on my entire being, and I will be hurting and aching and tearful and overjoyed and wondering why the hell I put myself through all that pain. Again. And then I'll remember: because I'm helping people like me.

My sparkly, phenomenal, and really rather super new fundraising page is sitting just under these highlighted words and, if you should feel so inclined, you can help women and girls just like me, who have fearsome pain and dreadful days, so that they'll be sure people are there to help them get through those dark times. I promise your donations of supremely welcome moolah will do wonders for countless people. You can, indubitably, make an actual difference to actual people's lives. Including mine. And I'll be hurting after the 5k. So please, make it worth my while, if you can? Please? CLICK ME NOW!

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Monday 18 June 2012

The Guest Blog Post

Knowing how it feels to be unwell a lot of the time, or at least not great, is really quite rubbish. If you know someone who experiences similar or the same feelings, it's good. But still rubbish, because you know they suffer, too. When a friend (and my former home tutor) introduced me - by way of those postal letter things - to a girl call Lynsey (who she also tutored at home), none of us would know how important that meeting would come to be in our lives. The friendship that evolved would become one of the most special in my life, and continues to be so.

Lynsey is my first EVAH guest blogger *erupts in applause and throws someone's pants on stage in celebration* and here, she tells you a little of her life, my life, and our lovely and very solid friendship.

When Lucy first asked if I would be her first guest blogger I was completely chuffed and then mildly scared; Lu has a lot of followers and is a stickler for grammar and spelling – I'm not very good at these but my followers generally don't seem to mind my grammatical faults. But I know Lu loves me as much as I do her so she'll forgive my down falls.

That's the thing about true friendships; they're tested by annoying habits as much as they are by big life events, but sometimes these life changing times are those that bring you the best friendships.

I met Lucy via our home tutor 13 years ago, we were awkward teens, Lucy would be quiet in her shyness; I on the other hand wouldn't shut up. Who'd have known that these polar opposite personalities would become such firm buddies and still have a strong bond even if we don't see each other for months on end. Our friendship is almost a two fingered salute at Endometriosis and RSD/CRPS, they may bring us down, but the pain brings us friends who build us back up again.

So many of my friendships have bore the same beginning, I've met some the best people I know from support groups, hospital stays and even my medical team have continued to be in my life way after treatment. Despite all the pain I may go through, as does Lucy and many of you – her readers, there is a silver lining to it all.

Unfortunately with everything there is a flip side to this said silver lining, a black cloud that descends over a friendship. Even without illness, you must have all experienced - that friend - the one who doesn’t want to be there when times get tough, the one who can't understand why you just don't get over yourself and move on. These are known as toxic people in my book, because to be a true friend you must take the good and the bad, even if that bad takes weeks, months, years or is a condition or illness that lasts a life time.

I'll put my hands up, sometimes my issues/illness/family problems have taken president over my friendships; but those who know me, recognize it's never out of malice or spite, it's the simple fact my concentration is directed another way for the time being.

I'm often asked would I take away my disability; it's a hard one to answer; I'd like to be rid of the pain but then that same pain as made me who I am today and I'm quite happy with that; would I have changed the experiences, the life lessons or the friends I’ve made – the answer would simply be – "Ah, Hell no!!

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Tuesday 12 June 2012


I often write very short lists of what I want to try to get done that current day or the next. I don't always do everything on the lists, but I remain firm in my belief that it's better to have those tasks on lists than not bother trying to do anything, or to have any aims, no matter how small they may be. Today's list: Ironing; 30mins Gym ball and/or Theraband; Bird food. The picture on the left is the ACTUAL list I wrote for myself on Sunday night. That's my writing, that is. Yeah. It features three tasks for me to attempt to complete. I woke at a good time, i.e. before 9 o'clock (in the morning), and, although I had some heavy pains, felt good "in myself", for want of a much better phrase.

When I came downstairs this morning, I was ready to fulfill at least one thing on the list. The exercise! After the mostly horrible-because-of-a-period week, today has been mostly pain-free, not least because of the dihydrocodeine. Usually after taking two of those tablets, I laugh in what can really only be described as a thoroughly stupid giggly and drunken manner. And the pain stops. Most of the time. This morning, I took them, drank my lovely sugarless Assam tea, plonked my heavy legs (and feet) upstairs, and pulled on my old clothes for decorating after deciding to help my hero Dad strip the wallpaper in the kitchen. (Incidentally, the jeans I wore were a size 12 and, for years, were quite baggy. Today, I struggled to do them up as my bum has grown out of size 10 jeans. Or stretches them to their limits, at least. I laughed and cheered loudly. On my own. I really did. They were tight as HELLFIRE is HOT. So, another point to Duloxetine for the weight gain. HOO. RAH.)

When we moved to this house (twenty years ago this year), we couldn't possibly have thought that only now we'd be having the kitchen WE have chosen, or, more specifically, the kitchen Mum and Dad have chosen. I know I'm not alone in being a person full of endless and passionate praise for their parents, for thinking them magnificent, so caring, generous, loving, and, frankly, really fucking amazing. For all these years of exceptional hardship, whether because of lack of money, bad health of one or more of us at any time, grief from losing a member of our family, my troubles at school - my Mum AND Dad have never, ever let me down. They have always been there, no matter what's happening. Again, that's not unique to me or my family, but it remains a brilliant thing, so I celebrate it whenever I can with hugs and tea and more hugs and more tea. I know: adventure even Bear Grylls can not imagine.

This house was built in the mid-1960s. There were BROWN tiles ALL OVER the walls, with randomly placed line "drawing" tiles variously featuring *cue Tony Hart's gallery music* an iron-shaped cheese dish, some kind of mill thing with a draw, and a partly-melted candle. *End of music* Brown. Brown brown brown. Cupboards, worktop, floor, walls. The cupboards had been removed the Sunday night before by my Dad and brother, revealing green woodchip wallpaper. Not just one green. No, no. THREE greens. THREE. GREEN. WOODCHIP.

Think about those words, dear Feasible reader. To temporarily adopt Jimmy Cricket's catchphrase, there's more. Whoever "decorated" the kitchen to its now-dead "style", whether the same person or different people, used a total of FOUR wallpapers in one very small area behind one of the cupboards. Two florals, with one featuring a geometric hell. And two colours of paint on to blown plaster. One of them was a green, you'll be flabbergasted to know.

The ceiling, where not painted its most recent shade of bright white, is a rather fetching [retching] brown, but more the kind achieved with years of fatty cooking and smoking. Nice.
This was all here before we moved in, and before the people who lived here before us, too which dates the decor to pre-1985. Ish. The standard of workmanship in this house, from wallpapering to plastering, from 49° mitred angle doorframes to the asbestos elbow-destroyer on the walls, is shocking. It's awful. Really. So bad.

That's one of the reasons I wanted to help my Dad with stripping the wallpaper. He's not in the best of health, either, with arthritis ruining his hip and back. It should have been fairly easy to remove the very offensive wall attire. It wasn't. There were TWO layers of green woodchip paper! Different greens. And ANOTHER layer of woodchip. It was YELLOW! I lost count of the times we had to soak and score the paper...s...

It took about four hours to remove a very small area of paper but remove it we did, and we had our respective aches and twinges and stiff backs and heavy legs. And it was all worth it. I finally said hello to the bathroom in the middle of the afternoon. I turned on the radio in there to hear the Edward Elgar's "Pomp and Circumstance Marches" and I grinned and bopped and grinned some more as the magic of what seemed like every instrument ever devised and created combined in the most perfect of ways to produce glorious majesty in music form.

What surprised me about me really very ambitious efforts considering I'd only just eaten the dihydrocodeine, is that I felt awake and eager and not spaced out in the least! Having said that, however, I do now feel... not broken, as I did on Saturday after the Friday night out before it, but... perhaps slightly cracked. My back feels stiff, my legs are aching, my shoulders, elbows and wrists feel as though all the nerves have been pinched, and my nose is snotting more than I've known for years. Lovely. But, like I said in the last post, these pains are good to feel because they're the result of something I have done, because I chose to, because I felt I could. It's not the endometriosis pain stopping me from doing things. I've not fed the birds, nor have I ironed any clothes, and nor have I done any exercise. Although, I did climb on the worktops, and stretch to soak and scrape the paper off the walls, and twist, and turn, and I think that might be all right for "exercise", such as it is.

I would like to have done more today, I would like to have done at least one thing on my list, but I haven't. I just didn't have enough spoons. Previously, I may well have felt guilty about that. Oh, who am I kidding? Of course I would have felt guilty! But, tonight, I don't. I put a lot of effort in to helping make the kitchen another step closer to being ready for its new face. And I'm pleased with that. Dad would have taken a lot longer to do it all without my help, he'd be in more pain than he is already, and he'd be even more tired than he is now. That's more than enough for me to be pleased with, especially as I woke up in quite a lot of pelvic pain, which needed painkillers to stop it getting my day off to a bad start. But I think my new way of thinking was a large part of that happening. I don't take enough credit for my achievements, be it the money raised from my 100%-for-charity eBay auctions, the improved way I look at life, or the help I give friends when they need me. I just don't want to disappear up my ever-growing arse is all, I suppose.

Tonight was about relaxing with tea, a hot water bottle, friends on the texts, and more tea. And food. Wherever it is now. In that box, probably. No, not that one; that's the Tupperware. This could take a while...

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Sunday 10 June 2012

Painting the nails red

Friday was "Going Out" night for me. If you've been reading this blog for a while and/or know how my life is, you'll know I don't do going out at night, let alone in the daytime, save for doctor or hospital appointments, or a nice walk to the local shops.

Following a few days of a less-bad-but-still-pretty-horrible-and-soul-depleting period, I spent a wholly wonderful and giggle-filled afternoon and evening with a friend before we went to see a show by another of my friends. Possibly, I should have stayed at home, and carried on "resting", as I'm still eating the dihydrocodeine for period-related pain, and still have the all-too-familiar dizzy, heavy, aching of endometriosis and its period and ovary pains.

Along with the not-so-new anti-depressant, Duloxetine, the grogginess and urgh that come with the endometriosis generally, the periods, and the codeine can be quite hard to cope with, when I know I have to get things done. Mostly, those things don't get done. Or, they do, but much, much later than I have hoped or planned. Frustration often leads to guilt, which, in turn, leads to anger, more often than not. It's hard, at times, to remember that my not helping out at home is not because I'm a bad person or that I'm lazy; I'm not well. It's not my fault I'm affected this way, of course it's not. It's usually a complex mountain of emotions, so tangled, a considerable knotty mess. Worse than trying to comb my hair after a twiddle session.

The journey to the venue on Friday night took much less time than I'd expected, which was a bonus, and the scenery was really quite lovely. Horses, cows, hobbies, a kestrel, churches, countless green fields. The evening itself was an altogether joyful, happy, silly, giggly, being-with-friends time, and even though it seems to have fully broken me, my Rapunzel hair and I would not have changed a thing. These events happen so infrequently for me that, when there's a chance to enjoy myself, I grab it, and I want to fondle it, squeeze it, lick it, and keep it forever in a little box. I'm suffering now: I've been in stiff, achy pain all day; the period and ovary pains are still doing their worst; my concentration has been depleted beyond what I consider reasonable; and I've been tweeting happy happy codeine nonsense. Again.

It can be very easy to misjudge the abilities of a person if that person is seen doing "normal" everyday activities. If I'm seen to hang washing on the line in the garden, or walk to the post office, or tidy the kitchen, someone may well assume I can always do those things. As Jo says in this blog post, when you have, for example, a chronic pain problem, some people will only ever see snippets of your life, like excerpts from a film. Some parts of my "normal" day-to-day life are never seen by some members of my family, neighbours, acquaintances, some friends, although some of them know what my life is like, because theirs is so sadly similar. Most people will never know how the pain and the fatigue affect me, what they don't see is when I'm lifted off the floor because I can not move for the pain which stuns me in to submission, at the mercy of endometriosis. It's not a surprise to those who have similar troubles that some arse-candles have told me to keep my chin up, to put a brave face on, to look on the bright side. Really? D'you think I'm not already? Apparently, some people think that's the case. Knobheads.

It's been a long time since my last blog post. In a so-vague-it's-really-not-similar-at-all way to Lisa with her latest blog post, the reason is not because I've been terribly ill, either physically or emotionally, but because I've sort of done stuff. Not big, adventurous stuff. In my last post, I told you about my gym sessions at the hospital, and that I'd update you on how they'd been. Well here's the update: they've been MARVELLOUS. I've missed some, because of a clash of hospital appointments and the inevitable endometriosis/period bothers, which has been really bloody annoying, if you'll pardon the pun. I was brilliantly confident in that first session. Confident for me, anyway. I stood at the front, not hiding at the back like I would have not so long ago. I got the red Thera-Band - which I LOVE so much I bought my own - and I stretched and breathed, and stretched, and relaxed, and stretched, and breathed. I talked to people I'd only just met, I had fun on the cycling machination gadget, I walked on the conveyor belt, I bounced on the gym ball.

And I loved THAT so much I bought my own. It's blue. And it's a ball. It's a lot of fun. And I can feel it and the Thera-Band making a difference, I can feel my muscles working, being used, aching from being used. And they hurt. And it was good! I felt good! I suppose it was the endorphins doing their feel-good thing, but also that I'm aware I'm doing what I wanted to for so long, i.e. exercise, but felt unable to. I was hurting but because of something that was helping me, that was good for me. It wasn't something that was pulling me back from what I was nearly about to achieve but couldn't quite manage because of the pain, which stopped me walking out the door, or reaching across the worktop, or using the vacuum cleaner. This hospital-prescribed exercise has been the shove I needed to get back to being active, even if not quite on the same level as an athlete. It's enough for me, to help strengthen my body to better deal with the pains I have daily, and with periods.

Other bits and pieces have been going on and, while not super-important or life-changing to me, have been enough to be more important than sitting on the sofa tweeting about tea and whatnot. Because I've felt like doing other things. That still doesn't mean that I can do all the things I want to, because I still can't and maybe that won't happen soon or ever, but it might. Having that positivity is so incredibly important because it means other aspects of my life might change. I'm having more good days, and more good hours in those days. I'm waking up earlier, getting to bed earlier and doing more between those two happenings. I'm still tired, I'm still in pain, I'm still eating codeine every day, at least twice, and I'm still rattling from all the other types of medication I have to take each day.

Helped along and brilliantly encouraged by gorgeous friends, I've begun to do things I have wanted to do for such a long time. Such a long, long time. I'm watching films I've wanted to see for years but just never got round to. I've started - finally! - listening to classical music, which I've liked very much for so long but never quite got round to properly discovering. I have now. And I love it. I've found some new favourite composers, and works, and it moves me, building emotions the way only music can for me. Procrastination is one thing; being prevented by bad health is very much another. Of course, I do waste time playing Words with Friends - challenge me at thecurlylucy - and looking for ridiculously cute photos of animals on Daily Squee. Of course I do, I'm an idiot. Who isn't?

Even though not doing what I should do isn't really a good thing, not doing it because I have chosen not to do it most certainly is good. For me, at least. Not great when I've been asked to vacuum the hall and stairs 87 times in 2 hours, or when I'm meant to have got the washing in half an hour ago rather than punning to Twitter. Being prevented from walking normally, being "made" to stay on the sofa or in bed or on the floor, not having the physical strength to even speak because of the tears and the pain and the desperation to have all this stop and give it a rest is surely no-one's idea of a good life.

Before I started typing this blog post, I had it in mind that I'd finish and post at about 9pm. It's now past 2am on Sunday morning, and it's not quite finished. Why have I taken so long? Silly texts with a diamond of a friend. (Carbon Man!) Playing Words with Friends. Playing on Twitter with puns about potatoes. Watching the Germany vs Poland Euro 2012 match. Watching Harry Belafonte talk to David Lammy on Sky Arts 2 at the Hay Festival. Some of the delay in writing was because I wanted to do those things, while some was because I couldn't seem to move. Fatigue, codeine, endo. I expect I'll carry on recovering from Friday night for at least another day yet. It's still quite crap how long recovery takes, and loathe as I am to rest and take it easy to enable me to do stuff, rest I must. Which is why, at nearly 3am, I am still awake and typing these very rambly words. Sensible is not my middle name. Clearly.

And so, with meh-inducing pelvic pain, ever-heavy eyes, and an increasing inability to type coherently, I am away to bed to sleep and, hopefully, have a night full of rainbow dreams. Sunday will, if my plan transpires, be the day I finally watch Tron after feck knows how many years of wanting to.

Goodly night! Or good morning. Or afternoon. Or evening. Or whatever.

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Saturday 19 May 2012

Let's get physical!

Visions of precarious pensioners huffing and puffing and heaving their way around treadmills and weights began to inhabit my thinking where, previously, quite reasonable notions existed. But hang on - I'm 30-years-old and have chronic pain, so where did those assumptions come from? And aren't they unfair? Well, yes. Of course they are.

My pain management treatment with the hospital includes gentle exercises "to enable individuals with ongoing pain to improve their activity levels". I'd attended this kind of happening, just once, many years ago in an attempt to help strengthen my wobbly, dislocating knees. It didn't go well; I was catastrophically premenstrual and had a mood on. I didn't go back.

When these current fitness sessions were suggested, I was, initially, apprehensive. In a keen-to-try-it kind of way. I have to try everything the pain people have to offer, of course I do. I've seen the psychologist, who was very lovely, and helped me to view aspects of my life in a not-so-gloomy way, to hope for better while still being realistic.
I've begun using a TENS machine, which, although not a super-treatment for my endometriosis pains in all their varied glory, does help in some magical tingly way.
And I've changed my anti-depressant by swapping Citalopram with Duloxetine, as suggested by the pain people, as the latter can help lessen pain. And things are changing...

My last period - and the second on Duloxetine - was still painful, I still needed help with moving and such, and I still felt fairly knocked out by the effects of endometriosis, the pain, and the painkillers. But this time, the pain wasn't breath-takingly horrific. It wasn't so terrible that I was disabled by it, nor was my ability to communicate with speech taken temporarily by the impact of the pain. Yes, I was still on the sofa but only for 2 days, and most of the time I sat up, watched who knows what on telly, laughed, joked, texted. I was in "good spirits". That NEVER happens when I have a period. I slept for an hour or so on both days, but that is much reduced when compared to my "normal" periods. And it's weird. But good. But still weird.

This. is. wonderful.

Duloxetine has decreased my pain.
The everyday pelvic aches and ovarian sharps are still there, but not as intrusive. I have some bad days, but fewer than before. And, on Friday, I wore clothes! Not just comfy trousers and a comfy top. Actual out-of-the-house clothes! I wasn't going anywhere while wearing those clothes but I felt like wearing them, rather than just wanting to. I didn't feel enough pain to warrant a hot water bottle, which, when wearing jeans, can burn like a mutha. Metal buttons + heat = OW. I still took my trusty 30/500mg co-codamol several times through the day to block out some pain but it was underlying and unobtrusive pain.

Reiteration: This. is. wonderful.

It's a huge change for me. Improvements. I've wanted this for so long, and never thought I'd feel it happen. This is no miracle, and it's not an instant change to my life; rather, I can see how unfortunate - but sometimes very likely - habits can all too easily form from frustrating situations in one's life. And, probably most crucially, I'm able to see these different viewpoints without feeling like I have to be defensive of the pains I have, or how I've been thinking. I don't always get things right. I make mistakes. My pain is real. But it's becoming less important in my life. I'm making it less important.

On day 3 of my last period, I was dressed. I was able to get dressed. I could stand up in the bathroom for 10 or so minutes without needing to sit on the edge of the bath to stop my unstable body giving up on me, and landing on the floor. That day 3 was mine. I "earned" it, I took it back, I unpeeled the cruel grip that endometriosis had on it when it stole it from me. A whole day! What did I do? I laughed. And I walked with stiffness, but easy stiffness. I marvelled with Mum about how different I was. I could see, when I looked in the mirror, how much better I looked. The mirror didn't crack. Enormous improvements...

For the first time in I don't know how long, I'm actually optimistic. I'm not setting my sights on an absurdly unachievable goal, but I am hoping to be able to get back to - among other things - my beloved Art, and yoga. Again, I don't have unrealistic aims; I must work within my limits, while simultaneously doing all I can to further my physical fitness and emotional well-being. (Ugh, how I detest "well-being".) I'm still mulling over the Art part. I'm quite sure I'll be unable to rely totally on any income I may be lucky enough to acquire from selling my Artwork, so I shan't be aiming to be entirely independent, lest it does not happen and I end up in a sobbing mess on the floor with a ton of snotty tissues beside me.

I'm as sure as I can be that my periods aren't going to "settle", or be less dominating, despite the reduction in pain, but they are having less impact and the cut-down pain, therefore, has meant that I'm less reliant on other people and THAT, blog fans, is almost THE most important change in my life for a very... long... time...

In the next post, you'll find out how my first hour in the hospital gym went.

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Sunday 8 April 2012


Some television programmes have gained criticism before even being viewed, and The Undateables, on Channel 4, was no different. Apparently, it was tasteless, offensive, patronising, and crass. It wasn't, to my mind. I think it's easy for people to laugh at the title; I did, a little. The point of the programme was obvious to most people who watched it, I would like think: looking, behaving or sounding "different" doesn't mean you're not interested in love or sex, but "society" might sometimes assume it is so. Another point might be that there is sometimes a reason for some people behaving in a way that isn't expected by some other people. You can't know about someone or judge them with a righteous opinion if you don't know anything or very little about them.

The first episode in the three part series featured Richard, Penny, and - my favourite - a funny and handsome northerner called Luke. He has Tourette's, and the spectacularly-named and very pretty girl, Lucy, with whom he spent some time, laughed when he swore. And I did. And I know others did. Is that wrong? I don't know. The way he sort of answered his own sweary tics was golden - after talking about the kind of girl he'd like to meet, he said, "Wanker! ...but not a wanker" - or looked knowingly at the camera after ticking was so charming. Just like a "normal" person might be! Who'd've thought it? Not some people, it seems. When he swore randomly and I laughed, I wasn't laughing at him. It's hard (for me) to not at least chuckle when someone says, quite loudly, "WANKER!" at no-one in particular. I thought he was completely lovely, genuinely funny, and brilliantly self-deprecating. And beardy. Something of the Jimi Goodwin about him. And that can only be good.

It's a sad and, I think, embarrassing truth that some people do actually believe that someone who, for example, uses a wheelchair or who looks maybe just a little different to what they expect is not interested in or entitled to a love life. OR A SEX LIFE. Who'd have thought a human with a heart and a soul and a mind would want to be loved? Crazy thinking! But yes, some people, within their tiny brain peas that rattle about in those big old boneheads, believe people who use wheelchairs shouldn't be allowed to have children. A friend of mine, who uses a wheelchair, was told this. She should have been aborted or drowned at birth, according to some particularly charming erudites.

It goes without my having to say I wholeheartedly disagree with idiocy such as the above piffle, and not just because she is my friend. A dear friend. A friend so dear to me, whom I love so very much I can't find the words. Sometimes, she suffers so badly with such terrible pain that her independence disappears for a while, and she needs help with the most normal daily tasks.

I'm not an independent person because of my health troubles. When I was in my teens, I didn't have independence because of depression and nearly being sectioned all of 4 times in 3 different places. I had pitifully low self-confidence, and felt so frightened of talking to other people and making eye-contact. I'm just a little better at that now, but still feel shy at times. My online persona is the same as my offline persona, at least among those who know me in that real world place. The only difference might be that meeting new people can sometimes mean I'm not so talkative either one-to-one or in groups; I have trouble knowing what to say in conversations or just as small talk; I worry that I'm boring people or appearing to be a total knob in every way. I'm very sure - confident, actually - that there are some people who believe all that to be true, anyway.

I've never considered myself disabled because, erm... well, I'm not. Of course, people feel differently about many things, be it politics, love, spicy food or Danish police dramas. And I do wonder how people feel if they are told they're disabled, if they're given that label by others or themselves. Is it a label? Is it limiting? It is frustrating? Does it induce anger? Do people class themselves as disabled? Is it degrading? Is it helpful? Is it embarrassing? I suspect others may think it's something to be embarrassed about if they themselves are not disabled and don't understand or appreciate what it really means, regarding the effects on living. I think those same people might also think completely differently if something happened whereby they were to lose the ability to do what they usually do, or if that were to happen to someone they love.

If you've been reading this rambling blog a while, you'll know that my endometriosis affects me in such a way that, when I have a period and the pain is at its worst, I am unable to walk, talk and move without help from someone else, most often my Mum. In that respect, it disables me, so I am, therefore, temporarily disabled. And those kinds of words are used in the text relating to the benefits I receive: "If your illness or disability has a severe effect on your ability to work, you won't be expected to work." I don't consider myself ill with endometriosis or depression, at least not currently regarding the latter. My endometriosis-affected bits do look diseased, so sometimes I think of it as a disease. The photos in my medical file definitely aren't pretty. Endometriosis is certainly a condition. Disability, though? No. Not for me. Or is it...?

After and during watching The Undateables, it set my mind to thinking about my own situation, and about how I'm single and have a limited social life but for the wonders of the internet and my phone. And those postal letter things on paper things with ink stuff. I am the textbook case of the girl who really doesn't get out much. Am I to be consigned to the scrapheap of spinsters? Are my chances of companionship obliterated to sod all? Have I passed the age of absolute happiness? Probably not. My life has changed so much in the last 3 years alone because of endometriosis and, because of that, obviously I've changed, too. Aside from my increased confidence and weight, my expectations and hopes for my own life have altered because of the surgery and treatments I've had, because of the prospects of pain, and the limitations imposed on me because of the pain. Aw, poor me, and so on.

The people I consider friends whom I've met in real actual places and online through Facebook and Twitter have very often been wonderful. It's lovely, of course, when people say you're bound to find someone, because it implies they think you're kind, caring, worth being with, worth talking to, that you are, essentially, relationshipable. Hey, new word! Someone call the people at the OED. But how? How am I meant to find someone? I wonder what kind of partner I make now. Am I worth it, worth being with? (I'm not going to do a Brick at this point, don't worry. Unless I want to laugh hysterically for an hour.) I'm a stressy person to be around, I think. On my good days, or at the OK times, when I'm not crying in pain (endometriosis) and sobbing because of the way I'm affected by the pain (depression), I'm really rather fabulous and lovely and funny and wonderful. Oh. Damn. I did a Brick. SHIT.

If I'm to be loved - by anyone, family, friend, other - it has to be for the way I am, including the not-so-good times as, indeed, it should be for anyone. When I'm depressed, I do not care. I mean, I care for my closest family and friends, but not about me and things and routine and clothes and emailing and texting and talking - I. don't. care. When I'm ill with periods, I need looking after. Even though, with the new medication, the pains are slightly less intense but I still need to be almost literally carried from, say, the floor of the hall to the sofa in the living room.

As the divine Marilyn Monroe said, "I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best." And how brilliantly true, from a beautiful and wonderful woman who suffered horribly with endometriosis and depression.

Really, what kind of prospect is that for a man? For anyone? It's rubbish. I know it's about love, and if he's good and true and honest and kind and all that, none of that will matter. But. I can't help but feel that I'll just not be anyone's other, someone's wife, the soulmate of a man with a love for Art and Blackadder and Doctor Who and tea. Not necessarily all of those but really - no tea? GET OUT.

Of course I don't want to be alone. I'm not bothered about going out every night and, let's be honest, that's *AMERICANISM KLAXON ALERT* SO not going to happen. When I can, I want to go to Art galleries, museums, exhibitions, see the new Aardman film at the cinema, visit those big posh houses in the country, watch documentaries about Mitchell and Kenyon, and DVDs of A Bit of Fry and Laurie. I want to be able to sit in front of the telly, with it switched off, and instead listen to Radio 4, and knit or crochet and swear when I do it wrong and then laugh and look up to see "The Man" laughing, too. I want to do all those things with "The Man". I want to be WITH someone, laugh with, literally go out with. BE WITH. I've been on my own - i.e. single - for so bloody long and I'm SO bored with it! And, y'know, I'm sort of getting on a bit now.

I already have 2 walking sticks. And, I must make myself totally clear at this point to ensure that you know, you lovely reader, you, that I don't have it all set out in a plan and believe it ABSOLUTELY MUST BE THAT WAY ELSE I SHALL DIE ALONE, SURROUNDED BY MY 11 CATS WHEN I AM 74. Common interests, shared passions, that sort of thing has to be there. I think. For me. In my opinion. I think. Clearly, The Man has to be exceptionally understanding about this almost impossible life of mine. Otherwise, as with the tea, BUGGER OFF.

And I don't like the tag of "singleton", because it sounds like something from Sex and the City and I unequivocally can not stand that programme. "Looking for love" sounds desperate. And "looking for Mr./Mrs. Right" is just crap. But is it my time to see if online dating is for me? Should I see what might happen among friends? Or maybe I ought to just not bother after a heartbreak of a few years ago which still brings a tinge of sadness to my mind whenever I think about what on Earth I did wrong. Again, obviously (probably) he wasn't worth bothering with (although, I do still think of him, and I wonder if he thinks of me) but that's where the wonderful and slightly pointless-in-its-lateness retrospect becomes useful. Except for its lateness. You GIT.

Whatever the answer is, I know the time is right for one thing: Ovaltine. After all, I am wearing my slippers. I'm so hot, yo. Bring on the admirers! Or not...

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Friday 30 March 2012

Anniversary Special

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

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

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

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

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

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

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

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

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

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

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

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

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