Nanopoem.

NaPoWriMo 2013 - part three. Day three.

Sweet peas
And roses,
Together
In posies.

Stuck with
The posies
By blankets
And Rosie.

Another old yarn...

NaPoWriMo 2013 - part two. Day two.

Needles and hooks
And wools and yarns
Form flowers and stems
And bring aches in my arms
Crafting leaves of green
And petals of pinks
I need more caffeine!
I must plan and think
Of the rainbow delights
In my scarf (with some glitter).
It's a bit like The Doctor's...
I'll debut it on twitter!

My vow to complete it,
And not leave it unfinished
Remains a real promise to myself;
I shan't let it diminish
Or become another attempt
To occupy my mind,
To be productive, to do STUFF,
I will not just let it lie
In a bag in a cupboard
With the needles and hooks
And the yarns and the wools,
And I WILL read those books... probably...

Regrets.

NaPoWriMo2013 - part one. On day two. Oops.

I don't profess to be a poet, or to be capable of writing a poem with any skill or reverence. I loved doing the NaNoWriMo in 2011, and wanted to take part, again, last year but I didn't feel able to do it because of a certain Noristerat injection, which caused suicidal thoughts, along with the too-familiar depression and anxiety. It didn't help my endometriosis symptoms much, either. Failed treatment number 423.
So, then, here is my first "bit" to be followed, hopefully, by more. I may or may not post each poem I cobble together.


Words were never enough
To explain my gratitude
For the precious time and care and kindness
Lisa continuously showed
To me, my Mum, my family,
To people she'd never met.
That kindness never waned
And I shan't ever forget
How tightly she held me when I felt
I had to leave the party, because
My anxiety built and I had to get out
But immediately, I wished I'd stayed inside
To spend more precious time with her.

I crocheted her some flowers,
And made a card or two
Because I felt I had to do something
But I just didn't know what to do.
I still feel I should have said or done more
But what? I don't know. Do you?

My sub-standard health can take over, and
Days, and weeks, and months seem to
Disappear like vapour, leaving me
Wondering, "What the hell happened?
I've done nothing and been nowhere".

Notebooks were opened and
Many sentences begun with hopes of
Train journeys to London and
Exciting days with friends, but that
Optimism has been crossed out.
I've rewritten and ended
Those sentences and lists
Of where I want to go,
But there's always a part of my mind reminding me
It's hard for my body,
Which I always know.

Last week was hard,
For my body and for my mind,
Riding on trains and buses,
Seeing recognisable skylines.
I was in a busy, cold, and unfamiliar city,
Familiar faces were there,
Heads down, crying, sitting
Together for their hardest day yet.
So much love, and devotion,
Compassion, and grief
For a woman so wondrous,
So funny, and passionate,
So loving, so generous.

It's the middle of the night,
And here I sit, tapping my phone
All alone but for a cat and insomniacs' news.
I'm piling hope upon hope that my sleep might arrive soon.
Lisa was the one who inspired me to write,
To begin my blog about depression,
And endo, to talk about my life as it really is,
And through it, I learned
New ways of "self-expression",
I learned new ways of writing and "met" people
I never would've before,
And if that's all she gave me
I'd be grateful, but there's so much more
She maybe never knew she did for me,
For my Mum and my Dad.
I can't thank her now, but I wish, more than words can say,
That I had.

Something a little more Rosie...

With my jabs, I wondered if I'd be well enough to do some kind of work. After several days' continuous activities I can truthfully say, "No".

Thursday was to my GP for the second jab, then off to do some food shopping; Friday was a walk to the shops; Saturday was another walk to the shops; Sunday was a drive to some shops, then along to the antiques and collectables fair; Monday was shlomping; Tuesday was a walk to the shops.

Today I am shattered. I am aching and tired and full of headache with no apparent ability to concentrate. I had to undo and reknit the same rows several times because of my über-stupidity before finally and begrudgingly heeding my Mum's advice to, "Put it down or you'll make mistakes". BUT. BUT! It's not the usual ouchiness and duhhh from "just" endo and periods and pains and codeine; it's from doing things I've wanted for months and months, even years, because of the lack of periods! HOORAYS!

Words do not do justice to how I feel about all this. I am so bloody pleased and emotional about my third installment of A Change of Living, about how very weird it feels to be able to plan to do things, to not have to let down my friends and people and feel a needless leadweight of guilt about the effects of something I could do nothing to stop.

This is a relatively short post, and it has very few pictures to make it pretty but I hope you'll forgive me, reader, for my terrible absence and neglect of my blog. It's only now that I'm starting to feel like me, again, and a me who is heavier, bigger, chunkier. I have now gained - since beginning Duloxetine not even one year ago - ... TWO-AND-A-HALF-STONES IN WEIGHT!! Fantastic. I feel so good! I have never in my 31 years felt so comfortable being me, even though I do wobble more these days.

Aside from the dreadful effects of last year's hormonal mistake, Noristerat, home life lately has been super-stressful with my wonderful little Rosie being so very ill that we thought she was a goner. But here she is, resting like a parrot on my shoulder, a position only a soppy old sausage of a cat could find comfortable.

I have Time Team to watch, a Creme Egg to devour, and the soppy cat with me to keep me warm and cosy.

This is a post via my phone since I genuinely can not grasp the shreds of effort and energy floating about to open my poor old laptop. I hope it posts correctly and looks decent enough.

Hopefully, not too much time will pass until my next post.

(P.s. If I said I'd make you A THING a looong time ago and didn't send anything - because of depression and endometriosis - please do tell me where to send A THING. A random sending of THINGS has commenced so you may well receive A THING soon. Comments on here are verified before being published so addresses won't be shared, or you can send me a direct message on Twitter, or send a message on facebook. Or email stopitendo@live.co.uk)

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.


Lucy.


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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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Dinosore

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.


But.


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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