Scraps

There was something uniquely depressing about that moment in May, when I pulled the little pile of paper scraps out of the mail bag. 

It was Mum’s 70th birthday. For about a year now, her resolutely advancing Parkinson’s has grown grimly evident, in every aspect of her physical and mental existence. Simple movements, eating, drinking, even just sitting – all of these are an enormous challenge. The disease saps her strength, slurs her speech, muddles her memory and throws her emotions into disarray, bit by excruciating bit. Every day, the bastard steals another tiny piece of her. But even though it claims a few battles, she never lets it win the war. My wonderful Mum. My lovely, loving, fighting Mum. Even just one of the remaining scraps of her is bigger and bolder than that mean little mindfucker.

I did a quick mental check of my facial expression before I turned back round. Keep the eyes neutral and the mouth chatty. Focus on the little, everyday tasks that keep the wheels turning. Be reassuring and positive. Never mind the fact that she’s torn up her financial paperwork whilst confused – it’ll just have to wait. Remind Mum that I will be there on Saturday, to take  her to her birthday party. Slip the paper scraps behind the other things I am carrying, and give her a hug and a kiss before I go.

And that was it, for the next couple of months. The birthday party came and went. I struggled with a couple of minor illnesses and migraines, and slowly learned the importance of working on my hormonal balance. My health improved enough to allow me to phase back in to full-time work, and I began to really love my job again. I went on holiday with my husband, our first in several years. It was absolutely glorious. I began to reconnect, with him, with friends, with me. The scraps of myself began to reform, into a new and hopefully happier whole.

Today, I tidied away the last bits of my holiday unpacking. The task was already ten days overdue, but what the hey. I am slowly learning to pace myself – things like housework just take longer now. The clothes once again neatly folded and put away, I turned my attention back to my wee pile of paperwork. I’ve been looking after Mum’s admin for a while now, a task that I am happy to do and that tends not to pose any major challenges anymore, now that I am up and running with it. 

Except that I’ve never had to stick scraps of paper together before. Ah well, it’s a mindful task, I have the time and energy for once, might as well listen to some music I like, while I get on with it. There are people in the former Eastern bloc whose whole lives are scattered across boxes in basements, in tatters smaller than this. Mum’s financial confetti will probably turn out to be bollocks anyway. But I’d better make sure.

About one hour later, the scraps are taped together like Frankenstein’s bank statement, and they have indeed turned out to be bollocks. But at least they are not depressing me anymore, strewn about my desk like trampled cigarette butts, a mockery of my mother’s mental cohesion. My husband comes home with the groceries. It’s a beautiful life; time for me to carry on living it.

Beatling along the road to recovery

Recovery from an operation is about as linear as a cat’s favourite ball of yarn. After a few weeks of disproportionate ups and downs, tangled up with some minor but disruptive post-op symptoms, I’ve had to force myself into a ‘slow and steady’ mindset; not an easy task for me. I’ve returned to daily walks in the countryside and gentle, incremental goal-setting.

Walks are great for reflection, which is one of the things my doctor has advised me to do. I reflect on my journey since my endo diagnosis, on the journey ahead, and on living the heck out of life. I reflect on the beauty in nature and on life’s simple pleasures, such as sleeping next to my darling husband. Even though he is less inclined to sleep through the night than to can-can his way through it, I am glad to be back beside him – tempus fugit, after all. Or perhaps rather, tempus pugilit. 

I reflect on how bloody lucky I am, and how bloody lucky others are not.

Some days when I’m reflecting, the latter thought tugs at my mind, edging me towards the treacherous potholes in that non-linear recovery path. On days like that, I find it best not to tune in to the news, which can be pretty bleak at the moment. 

My mind wanders: I read the news today, oh boy, John Lennon wrote. Totally agree with you, John. But now, a different question is troubling me: where on earth did that bit about Four thousand holes in Blackburn, Lancashire come from? Were the holes physical or metaphorical? Were they all concentrated in one place (a field maybe?), or were they spread across the region? And why Blackburn? Does it have an unusually large population of moles? Or do the people there just really love golf?

Back home, with the aid of Google, I learn that Mr Lennon sat down at his piano on 17th January, 1967, with a copy of the Daily Mail*, whose contents ultimately inspired him to write the lyrics to A Day in the Life. Juxtaposed with a news item regarding a fatal car crash was an article called The holes in our roads. The first paragraph reads, “There are 4,000 holes in the road in Blackburn, Lancashire, or one-twenty-sixth of a hole per person, according to a council survey.” How oddly specific. 

Aha! – so they were potholes, then! And each pothole could be shared between twenty-six people? Blimey. That’s a lot of knackered car suspension systems.

But that’s not all Lennon wrote about those potholes – the next lines in the verse are: And though the holes were rather small**, they had to count them all – Now they know how many holes it takes to fill the Albert Hall. 

Well, those poor buggers in Blackburn must have been having a tough time. Not only having to put up with all the potholes (I empathise), but also having to count them all!  However, I do think that reporting the whole sorry saga in the national press was taking things a bit too far. That statistic could have remained buried in the notebook of the council surveyor, affecting the world beyond Lancashire in no way whatsoever, had it not been plucked from obscurity to fill the Daily Mail’s spare column space that day and then found its way to the front of John Lennon’s piano. And now, no tourist in the world will ever want to visit Blackburn – not by car, at any rate.

But there are winners as well as losers in every situation, I realise. A quick bit of arithmetic based on the numbers in the article tells us that the the capacity of the Albert Hall must be approximately 104,000† – wow! I’m impressed, and I start imagining what an enormous building the Albert Hall must be, and how tourists must flock to London to marvel at its spectacular size as well as its architecture and history.

Sadly, however, Google is arithmetically brutal – it giveth and it taketh away. My illusions are shattered when another quick search reveals that the capacity of the Albert Hall is in fact a mere 5,272††. Gutted. Ah well, maybe arithmetic wasn’t our John’s strong point. After all, in that other song of his, he did seem to have trouble getting past the number nine.

* Sources: https://www.pressreader.com/uk/daily-mail/20170421/283137133670937 and https://twitter.com/FXMC1957/status/1376904080157777922

** Were they, John? Really? I mean, twenty-six people (even very skinny people) in a pothole sounds like a pretty big hole to me.

† where Capacity = Number of holes required to fill Albert Hall / Ratio of holes to people in Blackburn, Lancashire

†† Source: https://www.royalalberthall.com/about-the-hall/the-charity/about-the-charity/governance/

Agency and inevitability

Let me get this straight: I am not one of those ‘filial duty’ types. I do believe that every human being should live with respect, kindness and dignity. I do believe in being an agent and a catalyst for these; but not for the sake of guilt, conscience, pride, reputation or reward. I don’t believe that basic humanity demands any kind of transaction, whether worldly or spiritual. I just think: if you can do the good, do it. Without harming anyone, of course – yourself included. If you can give the help, give it. If you can be the difference, be it.

I love my mum very much. So very, very much. In our relationship, I can do the good. I can give the help. I can be the difference. So; I do – not because I believe in filial duty or in debt (after all, I was in no way instrumental in my own creation*). I just do.

These past months – no; years – have been hard. So very, very hard. Being a carer† is profoundly exhausting, in a way that cannot possibly be understood until it is experienced. (À propos, albeit indirectly: all you parents out there, I salute you. You may or may not have chosen this path; but you’re on it now. Keep going.) For such a long time, I have had neither the emotional nor the practical resources to write this blog. 

However; thanks (if that’s the right word) to my hysterectomy etc‡ last week, I am currently kept awake every night, due to an eclectic combination of hormonal insomnia, bladder sensitivity, occasional nausea, painful intestinal gas, and severe diarrhoea. Fun. I am suddenly acutely aware of, and thankful for, my pelvic floor. This in turn has given me a brand new insight into why my mum has always sneezed so bloody loud. (As a matter of fact, every new insight into Mum deepens my connection to her – sneezes and all – and strengthens my resolve.) To any readers still in possession of a low-mileage uterus, I say this: invest in your pelvic floor. For the love of all that is sacred, especially your future physical wellbeing and other people’s eardrums, invest in it.

Once, many years ago, I knew a bride-to-be who was considering whether to have children. She said she wasn’t sure if she wanted to have any; but then, if she didn’t, who would look after her when she was old? I still don’t know whether to be outraged by the pure egotism of her question, or gobsmacked at the naivety of it. Perhaps she will be wiser, if and when she reaches old age. Perhaps, if she is lucky, someone will be able and/or willing to look after her.

As for myself, I made that particular life choice a long time ago. Last week’s slice ‘n’ dice just underlines it. Perhaps, if I am lucky, I will be able to look after myself for the rest of my life. On the other hand; perhaps, if I am lucky, someone will be able and/or willing to look after me. Then again; at any moment, that proverbial bus could magically appear and extinguish me. One thing is certain though: I will make the most of my time. And my pelvic floor.

* That nugget comes from Mum herself, by the way. She has often told me that her paternal grandfather used to say of his grandchildren, ‘They didn’t ask to be born.’ I wish I could have met him – he sounds like a cool guy.

† “A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.” Source: https://carers.org/about-caring/about-caring

‡ The “etc” = Total laparoscopic hysterectomy, with bilateral salpingectomy and oophorectomy, plus removal (again) of endometriosis. Please don’t ask me to spell all of those words a second time.

An apology to my husband

Thank goodness for synthetics. I am of course a big fan of the natural world, but some man-made things deserve a special mention nonetheless; such as chocolate, chewing gum, dentistry (probably in that order), fleecy blankets and flip flops (again in that order), synthetic hormones, digital technology, and PU leather.

I have synthetic hormones to thank for a fairly good year so far, endo-wise at least. Following a difficult winter, my body seemed at last to acclimatise to the monthly regimen of Decapeptyl* injections plus HRT**, and I enjoyed several largely pain-free months – my four-weekly pat on the back in exchange for a stab in the butt, as it were.

Although they did not completely eliminate my health issues (fatigue is still a problem), the synthetic hormones did enable me to return to work on a part-time basis. Digital technology, and my fantastic employer, enabled me to work from home (I still do). My confidence slowly improved and, last month, I was successful at interview, securing a permanent contract (a huge weight off my mind, all things considered).

I am so lucky. Or so blessed? Or both? I’ll leave the exact wording and underlying philosophy to you. Nonetheless, the fatigue does still curb me somewhat; so, there is still room for improvement. First world problems.

Thanks to the spoilsports at the UK Medicines and Healthcare Regulatory Agency, testosterone therapy is not available to me unless I buy it privately online. Ah well, said the doctors – oestrogen can also improve fatigue; so, the dosage of oestrogen in my HRT was increased.

Almost instantly, my endo responded. Oestrogen is like Baby Bio to the weed that is endo – the nasty bugger has been absolutely loving the chemical boost it’s been getting. I’ve had pain in all the usual places, plus headaches, urinary symptoms and, ironically, fatigue. And today – ta dah!! – a new symptom: explosive diarrhoea.

Yes, dear reader, whilst professionally typing away at my work laptop this morning, I sharted. It came out of nowhere, and went absolutely everywhere. Hence why I am so grateful for PU leather: it wipes clean very easily.

After that delightful episode, I was exhausted and had to sleep for the afternoon. At some point though, a persistently piercing female voice disturbed my slumber. I groggily got out of bed and grumbled at my husband to turn down the TV. Back under the cosy blanket, I was again prevented from sleeping by the annoying voice. It turned out I had butt-dialled a Facebook video channel on my phone, in my sleep. For the second time today, my butt was responsible for a stream of unmitigated crap.

So, to my darling husband, I apologise. For once the shit was not coming from you.

* Decapeptyl is a necessary evil that ‘switches off’ the ovaries, so that oestrogen levels can be synthetically stabilised, thus stabilising endo symptoms. If you’re lucky. I wrote about it a wee while back, in https://ownendo.com/2021/08/11/d-day/

** HRT = Hormone Replacement Therapy. Because, as with many abusive relationships, can’t live with ‘em, and can’t live without ‘em either.

Adumbrations

I’ve said this before: memes are great. They help you make sense of the world. Or make fun of it – an arguably more helpful exercise in these polarised, unpredictable times.

A meme I’ve seen recently features a naked baby sitting on a waterlogged seashore, a puzzled expression on his chubby face. He looks like a tiny philosopher, pondering: “It seems I’ve once again incarnated in human form. The tide, coming and going, mirrors the impulse of The Source of Being*, flowing in and out of material reality, a veritable reflection of the adumbrations of the universe, the macrocosm in the microcosm.” Finally, he concludes: “There’s a great deal of sand in my crack!” Fun punchline. Total contrast with the previous ramblings. Juxtaposition of the philosophical and the physical, of the conceptual and the crude, of wisdom and innocence. A helpless baby putting the world to rights. 

What bothers me about this meme is the bits I don’t understand. It bothers me enough that – yes, I’ll admit it – I decide to look them up. Cue some puzzled expressions on my own face, grimacing as I google the unfamiliar words and concepts, mouthing the words as I piece the meaning together. Adumbrations, I learn, means ‘foreshadowings’. Then I realise, for goodness’ sake, I’m a linguist, I should have known that. The prefix ‘ad’ conveys the sense of ‘moving towards’, and ‘umbra’ means ‘shadow’. Ach well, I’ve worked it out now, better late than never, hopefully I’ll retain what I’ve learned.

I wonder, as I often do these days, if I’m getting stupider as I get older. Maybe the only bit of ‘adumbrations’ I’ll end up retaining is the ‘dumb’. Maybe hormonal changes are slowing down my brain as well as my body. Endometriosis, like so many other chronically painful conditions, is so tiring – and a tired brain is a less capable brain. Will I always feel like this? Maybe I shouldn’t write myself off just yet. Am I being a defeatist or a realist?

A strange thing has happened to my confidence lately. On the one hand, it’s taken quite a battering, as I’ve been forced to confront my physical limitations and face up to the impact of these on my mental capacities. On the other hand, I have had to learn to care so much less about so many things, which leaves me plenty of space to focus on what matters most. This in turn brings a sense of liberation and self-acceptance. So what if I am the ‘dumb’ in ‘adumbrations’? It’s better than being the ‘brat’.

* Only look up The Source of Being if you have time. Lots of time.

Bees

There is a beehive in my lower left jaw. That’s what it feels like. It’s obscenely swollen. It’s buzzy, itchy, painful and hot. The bees are stinging as they work, creating new and impossible shapes in the jawbone, heating and hardening the bruised flesh.

Yesterday morning, my beloved dentist, the only dentist I trust and am not terrified of, greased up his elbows, gripped hard on his forceps, and hauled out the molar that’s been causing me trouble all year. I don’t think anyone else could have done it. I’d have run in the other direction. Done a rock extraction selfie like Tom Hanks on that desert island. Sucked out the abscess poison with a turkey baster. 

Ah well, that’s that tooth gone, then. Another irreversible change to my ageing body. Another adjustment to my night time routine.

The ageing bothers me a lot less than the telltale signs of a flagging immune system. The ill-advised action I took that led to my dental abscess was, believe it or not, eating chewing gum. Apparently, I need to tone down my rock and roll lifestyle. There have been other signs this year, too – the intense, almost unbearable endo pains after my vaccinations, the frequent minor illnesses, the fatigue that weighs down my feet and eyelids on an almost daily basis.

In probably related news, I received a call from my GP surgery yesterday afternoon, advising me that my bloods are ‘borderline low’ in B12 and folate. A quick scan of the NHS website* indicates some likely potential causes in my case: my vegetarianism and my long-term use of PPI (a drug used to treat the symptoms of an inherited hiatus hernia) the most obvious among them. Strange, though, that this has not shown up in any blood tests to date. Why now, blood? I’ve been a veggie for years. I’ve been on PPI for years. Why now? You could at least have had the decency to wave that big red flag of yours at the doctor sooner, before my immune system failed to prevent an abscess the size (and temperature) of a beehive in my jaw. Maybe the doctor will be able to help me understand why every other blood test I’ve had over the last three years has been so profoundly unhelpful.

Meanwhile, a mystery that the doctor has yet to unravel is why I had a fit in my local vaccination centre last week. (I’m very glad to say that the nurse nonetheless succeeded in administering my vaccines – she’s an absolute hero and I’m extremely grateful to her.) All I know with any certainty for now is that I’m not permitted to drive until the cause of the fit has been determined. Fantastic.

It’s been an oddly eventful month (year!) so far. Christmas is still over a week away and I’m already exhausted. In all of the muddle, the only constant presence (apart from my wonderful husband and family) has been my endo. Whatever weird problem has come along, it’s always been there, stabbing and squeezing at my insides. It is never categorically identifiable as the cause of the weirdness, but it never fails to make its presence felt. Never.

Would somebody scientific please pinpoint the link between endo and the immune system? You know, while you’re trying to keep up with Covid variants, plus all the other incurable illnesses out there. Thank you.

* https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/causes/

Duck’s Beak

Memes are great. In the thorny present of polarising politics, socially destructive Facebook* algorithms, and rampant inequality, plus large and unhealthy doses of pestilence, death, war and famine, they are a handy, concise way to express and share a whole host of human emotions and experiences. It seems Orwell’s Newspeak wasn’t far off the mark. And thoughtcrime is, arguably, already a thing.

I will plant my white flag on this issue right now – I’ve developed an engrossing meme habit recently, that runs the risk of becoming a social media addiction. Fatigue and left-sided pain have curbed my daily walks, which has had predictable knock-on effects on my physical and mental health. In an attempt to mitigate these, I’m slowly reintroducing reading, knitting and gentle exercise into my life.

(Flippin ‘eck, I just re-read that last sentence and realised how old and decrepit I sound! But I’m absolutely sure that my mind is still young! Which reminds me of a meme I saw recently, quoting Terry Pratchett: “Inside every old person is a young person wondering what happened.”)

On the plus side, my recent scan came up negative for that cyst on my right ovary. I’m super chuffed not to have cancer. But I’m rather confused that I still have right-sided pain. Was it a duff scan? The ultrasonographer was so fresh out of the wrapper that she practically gleamed; plus, she didn’t do the side-to-side thing that her colleagues have done in all the other scans I’ve had – she just held the probe firmly in the middle of my lower abdomen, like she was operating some sort of slow-motion pelvic pestle and mortar.

Back to memes: I rather suspect, given posts by many others lately, that I’m not alone in using memes when I want to scream, or laugh, into the void, or simply just to drift through it for a bit. Or perhaps that’s what Facebook’s algorithms want me to think. Whatever, I don’t care. Memes make that easier too. 

I recently (well, a couple of weeks ago) received the standard letter from my local health board, inviting me to book myself in for a cervical smear test and reminding me of the importance of regular testing (I’ll get round to booking it, honest. I’ve just been so tired lately. And there have been so many memes to discover.) Around the same time, I saw a meme that drew a hilarious parallel between a vaginal speculum** and a duck’s beak. Facebook must have been reading my mail, as well as my thoughts.

Now that I’ve seen the ‘duck’s beak meme’, I can never, ever, unsee it. Nor can I stop imagining the sound effect that will forever, in my mind, accompany the widening, vice-like action of the speculum after insertion: QUAAAAAAAAAAAAAAAACCKKKK! Perhaps followed by a sudden, smaller QUACK! at the end of the smear test, when they pop that poor duck’s beak back out again. If the opportunity for a wee bit of hilarity doesn’t prompt me to book the sodding smear test, I don’t know what will.

*’Meta’ – pffffffftt!! – sticking a new label on the tin doesn’t reduce the health risks of the contents. I’m mostly in it for the memes.

** A speculum (turns out that it is, in fact, often called a ‘duck-bill speculum’) is a sturdy metal or plastic device, shaped approximately like a penis sliced vertically in half (or; like a duck’s bill – you choose), that is inserted by sadistic medical professionals into the vagina when they need to prod around inside you for a bit.

Number 23

If blog posts were paintings, then this would be more of a Pollock than a Pasternak.

[Stands back and examines first sentence. Finds it poncy and presumptuous. Decides to make another attempt.]

If blog posts were pizzas, then this would be more pavement pizza than prosciutto di Parma.

[Stands back again. Realises she has unwittingly equated the life’s work of a world-renowned artist to puke. And she’s also somehow become fixated on the letter p. Decides to press on – dammit, I mean: decides to just sodding well get on with it.]

Everything’s been so befuddled lately. I’ve wanted to write but I haven’t been able to articulate very much inside my own mind, let alone on the page. I could try to pass off this blog post as an attempt at stream of consciousness; but there’s no point in pretending that this is anything more than arbitrary dribbling. Ah well. Dribbling will have to suffice for now. 

One of the difficulties has been these damn headaches. Every day. They’re distracting and more than a little inconvenient. The doctor said I should keep a ‘headache diary’ and get an eye test too, just in case. Progress so far: my headache diary is highly repetitive, and my eyes are fine. So; one of those things is a win, at least.

Another problem was that the initial success of decapeptyl in improving my endo symptoms was totally erased by two debilitating weeks of sinusitis. I hadn’t experienced it before and the pain was so severe initially that I thought I would need to have a tooth pulled (the tooth in question was already a troublemaker). Even after the second course of antibiotics had nuked the sinusitis, my strength was almost completely sapped.

At some point, in conversation with a different doctor, he made a comment along the lines of, what a trying couple of years it’s been. That’s OK, I quipped, I’ve slept through most of it. He asked me to repeat myself. Twice. I repeated the exact same sentence. Twice. Despite the danger lurking in his tone of voice. Fuckssake, I’m not stupid. I know what you’re getting at: if I’m in pain all the time and it’s disturbing my sleep, then how can I say I’ve slept through most of the past two years? Listen, Doctor, if you don’t get that, then I can’t help you. That’s what I do. I sleep and I take painkillers. When the pain interrupts my sleep, I take stronger painkillers. When I have an appointment coming up, for myself or my Mum, I sleep more and take more painkillers. Then, afterwards, I typically need 24-36 hours of rest and sleep, to recoup the energy I’ve expended. That’s what I do.

In between, there was also a letter from the gynaecologist, informing me that my ovarian cyst, that was first detected when I was hospitalised in April, had grown and was now classed as “large”. She asked me to arrange a CA125 blood test and advised me to expect a further ultrasound scan. In the days leading up to the blood test, I wondered if I had cancer. My husband was going through some stress of his own; so, I made light of my fears to him, and instead confided in one friend I knew I could trust. In doing so, knowing some of what she has been through in recent times, I was ashamed. But she did not let me down, and it helped me to share the burden. Eventually, the result came back normal and I was relieved, but I remained, and still am, confused and frustrated: why am I so weak? What’s the cause of all these dizzy spells? What about the other things, such as the bloating, the nausea and the fluctuating appetite?

One of the things you get used to as an endo warrior is that your results are always normal. My eyes are normal. My blood pressure is normal. My iron levels are normal. Everything else in my blood (which has been tested so much it should have a PhD) is normal. My scans are normal. (Except that there is now this cyst.) According to my results, I should be skipping through middle age, the picture of good health. Except I’m not.

I contacted the gynaecologist for help. Based on the initial success of the decapeptyl injections in stabilising my endo symptoms, plus the presence of the cyst, she advised that a total hysterectomy with bilateral salpingectomy and oophorectomy (translation: everything out) was a reasonable course of action, and she put me forward for the surgery. I’m fine with that – I’ve never seen the point of my reproductive organs anyway. I did iron out one niggle with the endo nurse though: why remove the uterus, if the ovaries are the culprit? Because removal of the uterus will determine conclusively whether you also have adenomyosis* (and, by default, cure it), she said. I’m OK with that – in fact, it sounds like a potential win-win. I hope so, anyway.

In the meantime, after getting over the sinusitis, I’ve been disappointed not to regain the energy and brightness that the decapeptyl gave me initially. Faced with having to take Mum to hospital for an outpatient procedure (my brother was not able to), I had to swallow my pride (along with the knowledge of the extra financial cost) and ask her carer to accompany us, as I can no longer do the physical handling of Mum by myself. (There had been some recent touch-and-go moments involving me, Mum in her wheelchair, and a gentle incline. God I hope she doesn’t read this.) As I typed the email to the care team leader, requesting that the carer’s shift be reinstated because I needed help, I struggled not to cry with sheer frustration.

What about now? The endo pain makes me walk with a slight limp. I tire very easily. Ridiculously easily. I’ve yet again adjusted the pattern of my days, to try to get the most out of the energy I do have. The urinary symptoms that plagued me before last year’s surgery have returned. I still do stuff, like enjoying days out and nights off with my husband, or spending time with family. If I see friends and acquaintances, it’s a real pleasure. Very occasionally, someone will comment that I don’t look unwell, which is a nice compliment to receive, and I’m sure is meant as such. If anyone – anyone at all – has their doubts, that doesn’t bother me in the slightest. Consciously looking ill, or acting ill, is utterly pointless, vain, dishonest, and wastes time that should be spent enjoying, giving and sharing.

Looking ahead, there’s the hysterectomy, along with the other -ectomies, plus a good old slash and burn of the endometriosis that’s grown back since last year’s surgery. Unfortunately for me though, Covid-19 is still stalking the streets like a giant stalking thing (to paraphrase Blackadder); plus, the economy is bellyflopping, public services are struggling, and winter is approaching. I’ve been told that the -ectomies will definitely not happen this year. I should count my blessings – a friend recently told me that her hernia operation will also not happen this year. Nor next year. Nor the year after that.

*Adenomyosis is sometimes dubbed the ‘cousin’ of endometriosis and occurs within the uterine wall, rather than outside of the uterus. If you’d like more information on adenomyosis, you could visit https://www.endometriosis-uk.org/adenomyosis-and-endometriosis .

Billy

Billy Joel was 43 when he graduated from his high school, having submitted the requisite essays to the school’s examinations board, in lieu of an English exam he missed as a teenager. I wonder why he wrote those essays? He was by then, and still is, one of the best-selling singer-songwriters of all time. He had a raft of hit albums to his name, along with multiple music awards and, just for good measure, the first of several honorary doctorates. Perhaps he needed to fill a bit of spare wallspace, or headspace, or lifespace, or perhaps he just has a cracking sense of humour. I’d like to think it’s the latter.

A few months afterwards, Billy (can I call him Billy? – I feel like he might be OK with that) released his twelfth (twelfth!) solo album, River of Dreams. The album’s first single, of the same title, is probably my favourite earworm ever. It pops into my head every time I’m awake in the middle of the night (guess why?!). And now it’s probably bouncing along cheerily in your head too.

Here I am, again, awake, in the middle of the night. I’m in pain, but tonight it’s the right type and amount of pain – just enough to keep me alert; but not so much that I am incapacitated. This is a useful kind of pain. I should perhaps put my alertness to better use – goodness knows, there are plenty of productive things I could be doing. Then again, there are many worse things I could be doing than indulging in a bit of introspection.

Pain, like introspection, is by nature both unique and commonplace. Every human being experiences pain. As patients, we experience and express pain subjectively; yet nurses and doctors must try to assess it objectively. Talk about performing the impossible, on a daily basis. Sadly, infinite variations in the way pain is expressed and assessed are a major obstacle to successful diagnosis and treatment. On top of that, with endometriosis (as well as a panoply of other ‘invisible’ illnesses), factor in the difficulty or near impossibility of detecting physical symptoms, and you’re left with a task that’s akin to threading a needle with an angry hippopotamus. 

Inevitably, diagnosis and treatment (even if you are lucky enough to get them) rarely equate to a cure. You are patched up and you move on. You learn, you adjust, you adapt. Like scenes from an Italian restaurant (I know, I’m over-Billying), your life continues to play out in a sequence of human highs and lows. I wonder if, as the cliché goes, I will one day get to watch it all flash past me, one last time?

If that is the case, I’d like to rewatch a scene from yesterday. I am sitting in a hospital waiting room with Mum, waiting for one of her regular consultant reviews. After many years, we have got these trips down to a fine art. We are enjoying coffee and shortbread in the sunshine by the window, and half-watching one of those daytime TV shows about fixing up houses, which in this episode are located in the English county of Shropshire. Mum, who has recently been losing a wee bit more ground in her brave struggle with Parkinson’s and its associated dementia, is continually repeating her PIN to me, a strategy she employs as part of her ongoing effort to maintain that aspect of her independence. To distract and constructively occupy her mind, I ask her about Shropshire and the surrounding counties. We’re on much stronger ground now; she knows the area very well. The conversation turns to history, including the castle at Ludlow which, she tells me, is the capital of Shropshire. That may or may not be the case, I think – she’s always been miles better on these topics than me. True to form, she’s doing very well; so, I decide to challenge her a little. I interrupt her, looking bemused, and tell her that I thought the capital of Shropshire was Shrop. That makes her stop and think; but, not for long, as she lifts her clever gaze to me, sees right through my ruse, and sternly tells me that there is no such place as Shrop. We laugh, and I am proud of her. I can’t hug her enough.

Let’s return to Billy, just once more. We all end in the ocean, he wrote. We all start in the streams. We’re all carried along by the river of dreams. Regardless of where you think you will (or will not) be in the end, you depart as you arrived; in other words, with nothing. Nothing that flows to you, or from you, during your lifetime goes with you; not riches, not illness, not your creations, not your possessions, not your clothes, not your body, not even your pain. One day, all that will exist of you is the memories you have left behind, the parts of your soul that you have gifted to other human beings. So, build on the strong foundations laid by others before you (I’m thinking of you, Mum). Be brave. Be compassionate. Tread softly. Laugh.

The Division Bell

A division bell, helpfully defined by Collins English Dictionary, is “a bell rung in a parliament to signal a division.” Hmmm. Nope, that still doesn’t help me understand the reason for the Pink Floyd album title. Thank goodness for the band’s David Gilmour who, in a 1994 radio interview*, explained, “… it is a bell that rings to summon all the members of Parliament to go to … the House of Commons, and to divide into yeas and nays to vote on the issues. … because, often in debates in the house of Parliament, the members of Parliament are not necessarily all there. Some of them may already have made up their minds … They get to the point where they finish debating, they ring this bell, everyone that’s in the area comes down … to vote one way or the other.” Thank you, Professor Gilmour. So much for traditional educational sources. And, come to think of it, so much for Parliament. Imagine if we could all do our jobs by making pre-defined decisions. We’d all be finished work by breakfast time.

Media sources broadly agree that the importance of talking, and what can go wrong in the absence of communication, form the major theme of the album. Indeed, its first US single and ninth track, Keep Talking, deals directly with this theme and features samples of Stephen Hawking’s electronic voice, saying, “For millions of years, mankind lived just like the animals. … All we need to do is make sure we keep talking.” 

Back to Professor Gilmour: “It’s the voice of Stephen Hawking, who is the professor who wrote this book called A Brief History of Time, it’s a huge, huge popular book. And he’s suffering from motor-neurone disease, and he’s in a wheelchair, he can’t speak, and this is a voice synthesizer computer thing that has been built for him. I think he can only move one finger, a tiny, tiny little bit, and he works it all with that. And … I saw an advert on the television in England, for a telephone company … and his voice was on this advertisement. And … this advertisement nearly made me weep. … they used him in the advert, I mean he was in it, on his, in his wheelchair. He looks kind of strange. Um … and I just found it so moving that I felt that I had to try and do something with it.”

How many relationships fail due to poor communication? Can talking solve all of a person’s problems, or even all of humanity’s? Perhaps not. There are plenty of problems with no solution, at least not that I know of. However, I’m pretty sure that most problems cannot be solved by not talking. Although talking is sometimes easier said than done.

Take this morning, for example. I called my local GP surgery (yet again, I know), to ask for help regarding some of the more uncomfortable side effects of the sudden onset of menopause that I’m currently experiencing. The receptionist listened politely, while I fumbled and mumbled my way through a description of my symptoms. She let me continue, all the way through my embarrassment, before politely asking me to call back later, as the surgery’s computer systems were currently down. I thanked her in what I hoped was an equally polite manner, hung up, and had a bit of a laugh to myself. I would have to do that all over again! I suspect that the receptionist was having a wee chuckle too, once she put the phone down. She and her colleagues must have to field quite a few awkward phone calls in any given day.

I persisted, and finally got myself on the appointment list, after three more attempts. (No joke!) Fortunately, by the end of my fourth time describing my symptoms, I was so used to saying the words that I wasn’t embarrassed anymore. They’re just words, after all.

Which brings me to another word: sex. The aim of this blog is, after all, to share (not to overshare, promise!) my experiences of endometriosis, in such a way that I can reclaim ownership of myself, my body, my life and my confidence. I would also be honoured if I could help others to understand what they and their loved ones are going through, or even if I could just raise awareness.

OK, let’s try to do that then. Exhale, think. Sex is … umm … Sex can be … aaagh, why am I finding it so difficult to write about sex?! Other bodily functions? No problem! My uterus? Practically a star in its own right (brat). Sex is just a process that happens at the other end of that; so, what is the big deal**?! 

Umm. Another thing that doesn’t help is that, at the moment, I feel about as sexy as a turd wrapped in turds, sautéed in turds and garnished with turdlets, served on a bed of dead cockroaches. (Sorry for the multiple references to turds there. They’re just so versatile.)

I’ll try approaching this from a different angle (as it were). Pain during or after sex, according to nhs.uk, is called dyspareunia. Ouch. This unappealing word, roughly translated from the ancient Greek, means ‘difficulty lying with’, and applies both to women and to men. There are numerous potential reasons why a person might experience dyspareunia. I’ll let the NHS elaborate on these†. In women, endometriosis is just one potential cause of dyspareunia, and this in turn can manifest itself as various types of pain, such as stabbing pain, radiating pain, or aching, which can be experienced both during and after the sexual act itself.

The effects can be devastating, for the individual, for their partner, and even for their family. A person might choose to suffer in silence. They might participate reluctantly in sex, be hindered from enjoying it fully, or they might avoid sex altogether. This might be their preferred option, of course; but it can be a significant barrier to intimacy for anyone who does wish to enjoy that closeness. Changes in sexual behaviour, whether active or subconscious, are a cue that is picked up by partners sooner or later. The partner might choose to continue in silence, pushing worries to the back of their mind. This too can produce behavioural cues that are picked up, despite a person’s best efforts. Sooner or later, tensions arise and divisions are created. In a family setting, this can cause children distress, which can add to the stresses already affecting their parents. Ultimately, relationships can disintegrate. Dyspareunia is unlikely to be the sole cause, but it can be a significant factor. 

It is no exaggeration to say that endometriosis changes lives. In my own experience, talking about my symptoms has helped enormously. Similarly, I would urge anyone suffering dyspareunia not to suffer in silence, and to reach out to someone they can trust. For many people, that someone will be their partner, but it doesn’t have to be – it can be a friend, a counsellor, or a doctor. (Maybe not the postman, though. He’s busy, after all.) There are also some great online sources of information and advice††. Most of all, though, you need to take a deep breath, and talk! It’s like Professor Hawking said: “All we need to do is make sure we keep talking.” 

* https://pfco.neptunepinkfloyd.co.uk/band/interviews/grp/grpredbeard.html

**If my husband is reading this: of course sex is a big deal, darling.

† https://www.nhs.uk/common-health-questions/sexual-health/why-does-sex-hurt/

†† For information and advice on dyspareunia / endometriosis, you could try:

   For information and advice on sexual health issues and the menopause, you could try: