Bear with me, dear reader, and I’ll explain. Alternatively: TLDR? – ok then, skip ahead to the last paragraph … I’ll just assume you’re not a Guinness drinker.

Years ago, not long after I’d quit teaching full time, I bought a (humiliating admission time … deep breath …) fitness DVD. I just needed my mojo back, y’know? (I mean mojo in its broadest sense.) I used to have pretty good mojo, at one stage; but then I poured it all into late night lesson planning and homework marking. Anyway, the fitness DVD did the trick and I regained my balance, confidence and sense of self. I kept that going pretty well for a few years – after the initial kickstart, as I’m sure you know, it’s easy to maintain those things, because your body’s happiness chemicals kick in and keep you on track.

Then, suddenly: endo. Boom. Then pandemic and being a carer: boom again. Then struggling with the social care system, then hospital, then struggling with synthetic hormones: BOOM. I’ve dragged myself back on to my feet a few times in the past couple of years, but it gets a little harder every time.

These synthetic hormones are the biggest b*tch yet. (Disclaimer: for some people, they work really well – they control the pain of endometriosis with minimal side effects. I’m just not one of those people, it seems.) At the moment, I’m not only battling my body (the pains haven’t gone away, they’ve just shifted), but also my mind. I need my mojo more than ever (apart from anything, I have to be fit for further surgery); but that first step has been almost impossible to take.

Until today. I put that fitness DVD back on, reminded myself that ‘ownendo’ was an aspiration for me, not just an available domain name, and went for it.

It (the incredibly easy, couch potato level, first DVD in the pack) was very hard work! I feel like I’ve just run up Rice Krispie Hill. (For those of you who have never trained at Tulliallan, or who can’t figure out why it’s called that: try going out for a very long run, supervised by Sgt Gorilla McSadist, who is relentlessly yelling ‘motivational’ slogans to make you go faster, and you’ll soon see what I mean.) But, as with Rice Krispie Hill, it didn’t last forever and it felt good to have completed it.

To return to my original question: how do you know when you’ve married the right man? This is how: 1) he walks into the living room when you’re redder, sweatier and clumsier than a boiling lobster, you’re surrounded by exercise paraphernalia, and you’re trying to mimic that embarrassing fitness DVD you pretend you don’t have; and 2) he quietly says, “I’ll leave now,” and walks right back out. That, dear reader, is a Grade A+ husband.

I’ve been in this Place before. It’s empty and vast. It’s not dark; just obscure. Or opaque. I’m not sure which. There’s no fear, no noise, nothing. There’s just. Absence. Of everything. In the emptiness, there is calm; but no peace. There’s no point to anything; but that’s alright. Thoughts drip sluggishly, springing out of, and flowing into, nowhere. It’s hard to write like this.

I want to write because it’s my authentic self. If I can care enough to express myself, then I can still exist. I can still come back from the Place.

You know the Place, or you’ve heard of it at least. Strange how it’s a veritable thoroughfare, yet you always travel alone through its vastness. There are many ways in and many ways out.

Time and experience have taught me some of the ways. Letting go of self is the quickest way out, I’ve found; but it’s also the quickest way in. By committing my whole self to step outside of myself, I can achieve good, I can do good, I have done good. My mum is back at home and better than she was. I am a small part of that. I am a small part of the many worlds I inhabit. In the smallness of my small contributions, there is joy. I like to contribute, I like being small; but, being small, I can be tired, and being tired, I can be drawn back to the Place.

I have an anchor inside me. I have had many anchors inside me, but the other ones have all been made of copper. This one is made of a hormone called levonorgestrel. The copper ones have always anchored me to myself. Initially, this one didn’t anchor me to anything. It scraped and snagged me. I felt like it was tugging queasily at my stomach, dredging my intestines, clattering painfully inside my head. As the hormone pervaded my bloodstream, polluting my body and swirling through my emotions, my sleep became sporadic and now, I am anchored to the Place.

Hands reach in, love stretches out. All you need to do to connect is lift a finger. Fleetingly, an instinct stirs – is it willingness? It’s gone now – was it willingness? Maybe. Maybe it will come back another time. There’s no time in the Place. There’s just. The Place.

Let me open a window for you. It is a window into Then. My mother’s hair is not yet grey; mine will not be grey, for decades to come. I am trying to understand something – so, I ask her: why would any woman actively want to put herself through the pain of childbirth? She answers: it’s true, at the time, there is a lot of pain and distress. But … then, your brain forgets all that very quickly, and what you have left is happiness, the joy of having a lovely baby. I am unconvinced, but moved. In the decades that follow, I remember her words and hold them close to my heart.

Let me open a new window for you. It is a window into Now. I am sitting in my comfortable living room near the fireplace, enjoying the warmth of its embers. It is dark outside and my husband is still sleeping in our king size bed, which I left a few minutes ago, taking my sleek laptop with me as I crept along the corridor, to avoid waking him. There is plenty of grey in my hair now, but I’ve grown comfortable with that. My body still works pretty well, even though it has developed a few niggles over time. I think back on my mother’s words. I smile – I am not a mother, and I am content with that. But … I will always have my mother’s words, and her love.

I’ve been finding it difficult to sleep since I left the hospital, just over a day ago. It wasn’t a planned visit: my screaming had woken both me and my husband on Friday morning, as I alternately writhed and froze in indescribable pain. One ambulance and two intravenous doses of morphine later, I had been admitted to the gynaecology ward. In the following days, various tests were hastily arranged and numerous further doses of morphine were administered. As my pain gradually subsided, my nausea increased. I  vomited, more than I ever thought possible. On Day 3, I began refusing the morphine. It’s still in my system though – I can feel it in my sluggish insides, in the crawling of my skin and at the edges of my mind. The GP said I must be sensitive to morphine and told me that it would take another day or so to clear. 

I was privileged to share a room on the ward with two other women: I’ll call them M and N. With the help of these two wonderful people, I will open two more windows for you.

M’s window looks about fifteen years into the future. She has a warm heart that is at least as big as her blue eyes and her wide smile. She’s been flown to the hospital from one of Scotland’s small islands. She misses her husband, her home and her wheelchair, that would enable her to travel back to the island on a commercial flight. As it is, she has to wait for the air ambulance to transport her back. She speaks of her excitement at going home again at last, and of enjoying her specially adapted bath. Oh, she longs for that bath! Even so, she is cheerful. She is cheerful that she has no pain, cheerful that she’s on the mend, cheerful about the good things in life – she’s a joy to be with. In the event that my future holds what M’s present does; I will be proud to be even a little like her.

N’s window looks about fifteen years further into the future, beyond the one where we’ve just left M. Whilst M is loquacious, N is silent. The warmth of her heart is there to be seen, but it’s behind something else in her eyes – sorrow, perhaps? She smiles back at me whenever I smile at her. Occasionally, she rolls her eyes as she smiles and shakes her head gently, causing the tubes in her nose, arms and abdomen to rattle a little, as they collide with each other and the bed frame. Her face is pale and yellowish, her nose pinched and her cheeks drawn. I’ve seen faces like hers before; faces that very quickly faded into the irretrievable realms of memory. When my time comes, I hope I can muster some of her dignity and strength.

I was discharged from hospital the day before M. As I was leaving, we wished each other well and each said we would think of each other. I sincerely hope that she is now happily at home and that her specially adapted bath is her own slice of paradise. As I walked (walked! – such a joy!) out of the ward, I smiled at N and she smiled back, silently projecting worlds of emotion with her eyes.

It’s not just sleep that I’ve been finding difficult since I left the hospital; it’s a few things. One of these has been the sudden grip of fear: fear of the physical pain still so recent in my memory, fear of ever needing to be back in hospital, fear of the overwhelming inevitability that I had glimpsed through those two windows into the future. I think my fear is at last partly fuelled by morphine withdrawal. The drug still scratches at the insides of my skull and chills the back of my neck. I’m aching to be rid of the morphine; so I reach again for the fruit juice, trying to flush it out. More than anything, though, I want to be rid of the fear. I think back again, and my mother’s words return to comfort me: your brain forgets the pain and distress very quickly, and what you have left is happiness and joy. 

I stand. I turn and look all around me, marvelling at the joy in every corner of the room, in every space inside and outside the house, in every part of my lucky, wonderful life. I decide: I will live life with joy, not with fear – because, to do anything less is a terrible waste. 

Damn you, Bette Midler. I was out walking last weekend and was listening to the soundtrack of It’s a Sin (which, by the way, is hands down the best TV series I’ve ever watched. With the possible exception of Penny Dreadful  – City of Angels). The soundtrack to It’s a Sin is absolutely packed with classic 80s tunes and many more besides – it’s eclectic and electric, reckless and shameless, joyful and doleful, all in equal measure. Every piece is a perfect accompaniment to the plot. And, what a plot! What actors! What a script! Did I mention that I like It’s a Sin?!

Anyway, where was I … oh yes. I’m out walking last weekend, and Bette starts singing Wind beneath my wings. Except, she doesn’t just sing it. That’s not just singing. It’s singing with the emotion dialled up to 100. Every note, every syllable is laden with more feeling than all the weddings, all the funerals, and all the memorial services you’ve ever been to, all put together. Listening to the lyrics, I suddenly thought of my mum, and that was it. I didn’t even make it to the end of the chorus without having to hit the skip button. It was either that or melt into a blubbing snot puddle by the llamas’ field. And I was sure as hell not going to lose my composure around those unfriendly, disdainful, woolly bullies. As I took a couple of moments to steady my breathing, Enola Gay started, my mood lifted, and I strolled nonchalantly on, head held high. Me vs the llamas: 1-0. Ha!

Fast forward to this weekend. This week, I’ve spoken with a doctor, an occupational health specialist, and a gynaecologist. I’ve worked five days and, for every one hour I’ve worked, I’ve slept two. I’ve eaten two suppers and one lunch – the rest of the time, I’ve felt either too tired or too nauseous to attempt a meal. I’ve also spent over two hundred pounds on one tooth (root canal treatment – ouch).

This week has also been my PMT week (which accounts for the almost-blubbing last weekend – that’s my excuse and I’m sticking with it). It’s now just over one year since I was laparoscopically diagnosed with endometriosis. Last year, just before the surgery, the gynaecologist offered to swap out my copper coil (y’know, just while she was poking around in that whole area) for a hormonal coil, called the Mirena, which, for some patients, can control endometriosis symptoms, with minimal side effects. It was a good idea, to be fair (y’know, kinda like getting new wipers fitted when your windscreen is replaced) – but I’ve responded poorly to hormonal contraceptives in the past; so, I turned her offer down. 

Fast forward to this year. A few months back, I started to notice the familiar, unwelcome, cyclical symptoms returning. First, I hoped it was a blip. It wasn’t. Then, I hoped I could control it with painkillers and sleep. I couldn’t. Finally, I called my GP, who referred me back to gynaecology.

I’m glad I did, because the wait was a couple of months, and the endo pain has come back big time this month. You know that root canal treatment I mentioned a minute ago? Well, with everything that’s been happening this week, I’ve realised that the root canal experience does provide me with a useful basis for comparison. Here goes.

You know that moment when the dentist is injecting your gum and the pain level keeps edging up as the needle sinks deeper and deeper, until your nails are embedded in the arms of the dentist’s chair? That. If you don’t know endo pain, then just imagine that injection in your tender, sore gum. Imagine how the long, slow, acute stab of the needle keeps intensifying, elongating down through your jaw and into your neck. Got it? OK. Now, imagine that same pain, appearing in a random flash, beginning in the soft tissues of your abdomen and slicing down through your pelvis, down into your thigh, where it somehow becomes connected to an imaginary rubber band that squeezes and stretches the needle down your inside leg, pulsing into your foot and finally exiting through your toes, stabbing them several times on the way out for good measure. Still with me? Good. Now, imagine that long, acute, abdomen-to-thigh needle, attached to its stretchy, squeezy, rubber band, randomly flashing into existence, not just once, but twenty, fifty, eighty, whoknowshowmany times per day. Finally, just for fun, imagine you’re in a team meeting when it happens, or speaking with a client on the phone, or trying to relax after a busy day.

The palms of my hands are going to develop scarring from my fingernails.

This time of the month brings with it other challenges to keep me entertained – loose bowels, urinary frequency, lower back pain, a slight limp in my left leg, headaches, nausea and fatigue. Most of these are bearable and/or controllable to some degree; the fatigue, however, is a major problem for me. This week, I’ve struggled to climb the stairs, or do a full day’s work, or do anything really, besides sleep and work. 

The problem with all of these symptoms is that they are common, not just to endo sufferers (I mean warriors, sorry!), but also to people battling other conditions. So; even when you do end up seeing a GP who listens, is circumspect, and has the right knowledge, you embark on a journey involving numerous tests and treatments to rule out other possible causes, before the risky and costly option of exploratory surgery is considered.

Bizarre experiences I’ve had as a patient have included: drinking so much water I wanted to explode (required for pelvic ultrasound), seeing the inside of my own bladder on a TV screen (cystoscopy), apologising to a physiotherapist for being fit (pointless referral by GP), getting high at work after taking a double dose of muscle relaxant (on GP’s instructions), attending A&E with acute pain and being asked by the young doctor who arrived to treat me if I knew where the patient had gone (you get so used to acute pain that you don’t express it, because that just uses up valuable energy) and finally (a bit disturbing), being prescribed a box of 28 opiates for pain and, on opening the box, reading the instruction leaflet that tells you not to take more than 3 doses due to the high risks associated with opiates.

I don’t want to get back to the point I was at in 2019, when my symptoms prevented me from working (or doing very much at all). So, this week, when I spoke with the gynaecologist, I reluctantly agreed to have the Mirena coil fitted, sheepishly muttering an apology for not taking up her offer in the first place. 

Here I am, then: hormones it is. As an endo warrior, you are your own guinea pig. There are no ready-made solutions, as the condition presents so variably and is still so poorly understood. The gynaecologist told me that I have to ‘stick with’ the Mirena for six months. Hopefully, it will control my symptoms, without any problematic side effects. If it doesn’t control my symptoms, the next step is an injection of chemicals that induce menopause – which, based on what I’ve heard from fellow warriors, I’m even less keen on. But, the way I’ve been feeling recently, I’m getting to the stage where I would take any injection over the pain and fatigue.

Time for a walk/limp in the sunshine, with some music. I’ll avoid the llamas today, just in case Bette Midler comes back on.

What a difference a year makes. Or does it? One year ago, it was March, which is Endometriosis Awareness Month. This year, it’s March again (surprise!) and it’s Endometriosis Awareness Month again. One year ago, I had just been given a diagnosis of endometriosis. (And, only one year before that, I had only just heard of endometriosis. Only one year! The average time to diagnosis is eight years; so, I’ve been incredibly lucky. Still, it was a painful, difficult year that I would gladly not repeat.)

I’ll never forget that experience: waking up in a narcotic haze, feeling slightly nauseous yet also incredibly thirsty, that brief moment of remembering the events that led me to be in a hospital bed, hearing the disembodied voice say, “We found endometriosis.” The relief! It was almost euphoric. Just finally knowing what was wrong with me was such a relief. And then, as if I was still waking up in stages, I realised: they found endometriosis. I have endometriosis. Endometriosis is incurable. I have endometriosis.

All the while you’re struggling towards that diagnosis, you feel like you’re scrambling up a jagged mountainside towards an invisible summit, with no equipment. Then, suddenly, you open your eyes in a hospital bed, and you’re at that summit! The surgery team picked you up and gave you a helicopter ride to the top. The surgeon is your sherpa; the gratitude you feel is overwhelming. The surgeon smiles kindly, answers your questions. It’s dark outside and she’s clutching her handbag and jacket – you realise she has stayed on late just to give you that opportunity. You thank her, she smiles and goes, your husband holds your hand. Then, as you lie back, the same old but somehow new and different you, you look upwards. And realise. This is not the summit. It’s just a pause for breath on the mountainside.

One year ago, the world was gripped by the unfolding misery of the Covid-19 pandemic and the fear of its many unknowns. We stocked up, we ran out, we stayed in, we locked down. We lived, we died, we suffered, we celebrated, we reflected, we learned. We were kind. What difference has this year made? From one angle, there’s no difference at all: we were locked down then, and we are locked down now. From another angle, there’s a world of difference today: we have a vaccine. (In fact, we have several.) We are weary, but we are hopeful. Are we still kind?

I come across kindness in so many unexpected places these days. When I took my mum to get her Covid-19 vaccine, a woman who had parked next to my car relinquished her parking space to let me help Mum out of her wheelchair. When I needed help studying, a colleague offered to post me her revision materials. When they arrived, the parcel included chocolate. The other day, another colleague asked me how I was, really meant it, and took the time to listen to me when I ventured more than the standard cheery response. We shared and listened. At one point in the conversation, my colleague referred to an elderly relative as being in the “foothills of dementia.” What a sad but perfect way of describing the rambling, misty beginnings of life’s last, arduous journey.

Perhaps we are now in the foothills of our global recovery from Covid-19. If I could, I would bottle that kindness that flowed so abundantly in the early days of the pandemic, and hand out those bottles to everyone I meet along the way. I get the feeling we’re going to need a lot more of it, in the times to come. Who knows how many cloud layers we still have to break through before the summit of the Covid-19 scramble is in view? There is still so much that is obscure; and yet, thankfully, there is optimism.

On the other hand, as far as endometriosis  goes, we haven’t even left the car park yet.

I have to work today. Yet, here I am, as Gwyneth Paltrow might put it, consciously unworking. (Disclaimer before I continue: this blog does not advocate the bodily insertion of egg-shaped minerals, nor any steaming device, nor the infusion of bodily secretions into candles.)

I spend a lot of time these days working, to make up for time lost working, whilst working. Wow, that is a sentence I thought I would never have to type again after having left teaching. I like to give my whole self to whatever I’m doing – many of us probably feel the same. It’s a joy to focus on an activity, whether mental or physical, work or leisure, paid or unpaid. The opportunity to focus brings calm and a sense of purpose. The brain and body work in harmony with each other, not in conflict. There is balance. The brain releases dopamine, or serotonin, or endorphins. Or other warming substances ending in ‘-in’. But not urine, I think. Whatever; I’m not a doctor. Anyway, the point is: it’s good to focus, then rest (a different type of focus). Then focus again, then rest again. And so on.

I believe the name given to that process nowadays is ‘mindfulness’. How on earth did we, in all of our evolving ingenuity, reach the point in our modern lives where the simple act of doing one thing at a time needs to be given a naff-sounding name and heralded as a groundbreaking concept? I’ll leave you to ponder that one. On second thoughts, don’t. Just do whatever makes you calm and happy.

Balance seems an impossible goal these days, both on an individual and a global scale. Want a balanced diet? Easy: just consume food and drink in specific combinations, assuming you have the ability, scope, capacity, time and money to source, prepare and ingest what you need. Want everyone to have a balanced diet? Easy: just solve global inequality. Want to balance time for work, rest, leisure and loved ones? Easy: just give up at least one of them. Alternatively, divide your time as equally as possible between all of them, and accept that you will be not be able to give enough, to any of them.

If you have endometriosis, you need balance! In a weirdly yin-yang sort of trade-off, endo can be exceptionally helpful in signalling to your brain that something is wrong. It’s a really clever wee incurable internal growth. How it works (for me at least) is roughly this: I get stabbed on the inside, every time I overdo something (and consequently underdo something else). For example: if I drink Coca Cola (thereby overdoing sucrose and underdoing pure H₂O), I immediately get stabbed. If I ignore the stabbing and drink another Coca Cola, I get stabbed even more. Conclusion: Coca Cola is bad for me. Solution: drink less Coca Cola, or don’t drink it at all. Thank you, endo!

Similarly, I get stabbed if I sit for too long – so, the solution is to get up and move around for a bit. Or, I get stabbed if I try to lift too much – so, the solution is to lift smaller loads, or lift in stages. Or, I get stabbed if I’m stressed – so, the solution is to … oh. 

That’s where the problem arises. There are of course lots of ways to mitigate stress: exercise, meditation, spending time with animals or in nature, hugs, sleep, reading, talking, not talking, anything ‘mindful’ (I’m trying to accept that word, ok? – I’m just not there yet) … and so on. But what about the stresses that won’t go away? What about grief, worry, frustration, compassion, exhaustion, fear, anger, shame, pain, guilt, emptiness, or helplessness? What about a combination of any, or all, of these?

Stab. Stabstabstabstab. StabstabstabstabstabSTABstabstababSTABSTABstabstabSTABstabstab.

There is numbness, of course. The antidote to feeling anything. But that yin also has its yang. Chemically induced numbness works well – at least up to a point – generally, that point occurs when you cease to function properly, or end up in prison, or some similar kind of difficulty. Psychological numbness is possible (although that takes considerable willpower), or can also be involuntary – but that strips away your humanity. And I quite like my humanity – I might even say I’m proud of it. And I need it, for the people I love, for the community I’m part of, and for me. The only option left is: balance.

A week of toothache and heartache (plus lots of stabbing – yes endo, hello, I know you’re there) has reminded me that I have to strive to get my balance back. Both my body and my brain are rebelling against what I’ve been asking of them. I’m currently watching our elderly cat, who has definitely used up several of his nine lives over the years, caper around the garden like a kitten. That’s balance. Yin and yang. Youthfulness in old age. Health and wholeness despite frailty and damage. I need to get there – but I won’t be able to start, until I stop.[]

For the first time in many years, I did not receive a Cute Cats Calendar for Christmas. Every year for I don’t know how long, I have been gifted the same calendar, by my aunt. They say you don’t know what you’ve got ‘til you lose it – well, my aunt died in September, leaving an aunt-shaped hole in the world. In amongst life’s hustles and hassles, I am still quietly taken by surprise at unexpected moments, by the ways in which her loss affects me – like whispering, irregular echoes, down a long, empty tunnel. Which probably accounts for the time I’ve just spent raking around online, trying to find myself a calendar.

What made it so difficult was not an absence of calendars, nor of calendars with cats on them. There are calendars with Cute Cats, Cuddly Cats, Adorable Kittens, Cat Shaming, Pooping Cats (yes, seriously! – there are also Pooping Dogs), Cartoon Cats and Cats in Nature. The difficulty was that each and every calendar somehow wasn’t right. Even the exact same calendar (2021 version) that my aunt has given me, year after year, wasn’t right. It’s not the same if it’s not parcelled and tagged, with the familiar curly handwriting, wishing me love and happiness for the year ahead.

If I seem a little obsessive about calendars, it’s because my calendar became incredibly important to me when I began my endo journey. (I say ‘began’ – actually, I’ve no idea when my journey began – maybe decades ago, when the wrong tissues started growing inside me in the wrong places – but, for the sake of simplicity, I’ll say that the beginning was when my doctor suggested I may have endometriosis and, like so many before me, I looked blankly at her because I’d never heard of it.) I digress. The beginning of my endo journey was the beginning of a whole new relationship with my Cute Cats Calendar. It became key to my understanding of my symptoms, as I used it every day to record the type, severity and location of pain and other symptoms that I was experiencing. Over several months, patterns started to emerge, and I became more familiar with what to expect and when to expect it. There were times when I questioned myself: was I ‘programming myself’ to feel pain? But the benefits outweighed the costs as, over time, I was able to introduce an element of control back into my life, to plan ahead a little, and that was a lifeline I clung to. My Cute Cats Calendar was essential to me, a piece of kit I could not leave the house without. I took it with me to every doctor’s appointment, every specialist consultation – thanks to my Cute Cats Calendar, I was always able to summarise my symptoms and maintain focus, which is tough to do in a 10 minute appointment regarding a mystery illness.

Until I was surgically diagnosed, in February of this year, my Cute Cats Calendar was my sword and my shield. I wielded it when I needed to provide accurate information. It shielded me from scepticism. It got me to that all-important diagnosis; then, it became my companion when I was recovering from surgery. I celebrated milestones. I kept an eye on my symptoms, albeit less assiduously than before – I had a life to pick back up, after all. Now, my Cute Cats Calendar shows a new pattern. The words ‘pain and nausea’ still feature every few weeks, but these are less severe than before February, and at least there is some predictability. 

My Cute Cats Calendar 2020 has just one day left to go. Part of me wishes I could just flip the year back, by flipping the pages, back to better times. Tomorrow, there will be a Cute Cats Calendar-shaped hole in the world. Other calendars might not be up to the job that it has been doing so well, for so long. But, I tell myself with a sigh, what’s past is past. I’ve bought myself a Sloths calendar, because sloths have smiley, benign faces. That seems as good a start as any to the new year.