Elixir

via Daily Prompt: Elixir

So this is a first – I logged in to write a blog post about Iceland, and all the amazing food we had out there, and saw this ‘Daily Prompt’ title and thought I’d give it a go…

Initially I thought I could link it to that aforementioned Iceland food post – but that would be cheating!

Instead I’m going to write about the green smoothies I’m starting my day with and my addiction to caffeine!

I have – at various points in my life – been told to avoid caffeine. I’ve had caffeine poisoning, from guzzling far too many strong coffees, and had a few periods where my M.E. was terrible and my migraines were unbearable, and the caffeine made it all worse – I wasn’t allergic, but certainly had an intolerance to the magical beans. I’ve since pushed through the pain…

In my caffeine-free days I also had to avoid chocolate – which is NOT FUN – and I did search out caffeine-free chocolate. In one health food shop I found some and was over the moon, until I ate it; it looked like chocolate, it smelled like chocolate, and it tasted like absolutely nothing. Like the inside of my own mouth, with lumps. It was like eating a chocolate scented candle.

In my 30s now, one thing everyone who knows me knows is that I love coffee. Properly LOVE coffee. I’m a revolting snob, I won’t drink instant, and I start my day with two (or seven) strong coffees made with my magical aeropress. Pretty much every day I am tagged on Facebook with some coffee meme or funny story – and my friends have all started getting ‘proper coffee’ at home so I don’t pull awful faces when I visit!

But when I get palpitations, my anxiety ramps up and my sweat smells distinctly of coffee, even I have to admit there’s a problem brewing (see what I did there…) and make some changes.

The change I’ve made began – as with so many of my recent positive changes – in Iceland. As well as some amazing food – which I promise I will blog about next – one thing I really enjoyed was the ‘energy boost’ green smoothie at Blue Lagoon.

We got our hands on the recipe for their smoothie, and made some of our own at home. It’s now the start to my day every morning, sometimes followed by a coffee, sometimes not (and just the one if I do, not bottomless cups) and I’m becoming That Person who raves about her green smoothies making life magically better.

But in my case, I often suffer with low iron, dancing on the edge of anaemia pretty much permanently – so the iron boost I get from this is going to have a positive impact. The bananas I have in mine are full of potassium and goodness, and I’m sure there are health benefits in ginger and apples that I can’t be bothered to google – and it gives me a pack of vitamins, minerals, flavour and energy first thing, and it’s reduced the amount of caffeine I’ve been increasingly dependent on, which can only be a good thing. I’m not going to cut caffeine out of my life, I’ve had to do that before and MAN is it dull, but I’ve cut down – and I’m drinking more herbal teas in the afternoons and evenings.

Spring is a time that a lot of us get more energy and drive, and feel more ready to make positive health changes – I started my diet just after Christmas and have been doing ok, but trips away and indulgent weekends mean I’ve only really lost a few pounds – then been putting the same few back on and off every month. So I’m going to take that more seriously, and this green energy boost to start my day is just part of it. This elixir (see, I’m tying it all back to the prompt!) is part of a bigger picture in which I’m also outside a lot more, going to bed earlier, and have gone back to the gym – where I was pleased with how much I could do as much as I was frustrated with how much I couldn’t compared to last summer.

The Blue Lagoon recipe uses orange juice as a base, and mango in the mix – I changed mine to use water as a base (because the kids had guzzled all my orange juice the first day and I realised it tastes just as good this way!) and I throw in two apples, two bananas, a good chunk of ginger root and a few handfuls of spinach. There’s very little measuring (by which I mean none) and I just poke it around the blender until it’s all smooth (which with my crap kitchen appliances takes ages) and then I feel all smug and healthy and superhuman, even if I am drinking it through a novelty straw.

I live in a body that sometimes feels like it hates me – with constant pain, bloating, and bone-deep fatigue that stops me from functioning at the level I want to. I can’t cure my endometriosis, or my M.E. or even determine if they are separate issues or just different manifestations of the same problem – but I can stop damaging myself more by using caffeine as a prop and actually start to take care of myself, with diet, fitness and being outdoors. I KNOW all these things work, and I know that I feel less unwell when I’m doing them properly – but I also know that when I’m unwell and I’m struggling, I just can’t take care of myself, and I have to ride through the gloom before I start to perk up again, and only when I’m already perking up can I begin to take the steps I need to.

I want to be as comfortable as I can be in this sack of skin and bones that rebels.

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I’ve never been a together girl

When I think of the women I admire, and aspire to be, I think of women who fill a room with their presence, who laugh loud, speak up and engage people. 

Women want to be their friend, men want to…well, be their friend, because why the hell wouldn’t they?! 

These women – the ‘together women’ as I call them – have their shit together. They are smart, talented, witty and confident. They don’t fall when they stumble, they keep going on their way. They brush off adversity, and they power through from dreams to doing, to find success and achievement and reach their goals. They don’t think “I wish” and sit back down, they get up and go. 

I have these women in my life. I love them with a fierce flame, and feel grateful to have their influence in my life. 

I was raised around these women – the strong, successful women who influence the world around them; who change lives, with passion and fight, or with a kind of inner peace that spreads by osmosis. Women who make the people close to them want to be the best version of themselves. 

I am friends with these women; I draw them around me like a safety blanket of power and good. Of strength and kindness. Gentle but immense. 

I also know that the ‘together’ that I see, admire and aspire to isn’t the version of themselves that they see. 

Where I see a confident woman who strides into a room, fills it with warmth and draws everyone to her, I also know that before the door opened she was taking deep breaths and clenching her hands together, psyching herself up first. 

Where I see a smart, witty, brilliant woman heading a growing business empire and attracting all the right attention for the success she so very much deserves, I also see someone who has questioned her decisions over and over and worried she’d fall – but who loved what she was doing enough to never give up. 

And the older I get, the more I realise that for every moment in which the together girl truly has all her shit together, there are many more moments in which she’s trying to, failing to and salvaging the pieces that survived the last drop from the mountain top. For every perfectly groomed moment played out to the crowd, there’s the sweaty palmed anxiety behind the scenes. 

I’ve also realised that for every moment I am panicking that someone might see through my facade to the angsty, madly paddling wannabe I see in the mirror, there’s someone who sees me stride into a room with my bright lipstick, big smiles and a firm handshake – and buys into it. 

For all the times I’ve looked at those other women and dreamed of one day being who they are, perhaps I’ve missed that I already am – and that these snatched moments of appearing to be a together girl is all we get? 

If we can walk the walk and talk the talk, and we can make that room full of people think we have our shit together, are we already there? 

Whether it’s true or not, I feel far more like a true together girl when the lipstick goes on. 


Here I am last week; last week I bought a car. The salesman had a weak handshake and told me I’d been a pleasure to do business with, and admitted he finds confident women a little intimidating. 

I threw up before I went, and had been awake most of the night with stomach cramps and anxiety. He had absolutely no idea that I’d cried for an hour before I did my make up – purely because I had never bought a car from a dealership before! 

I knew my anxiety was ridiculous – but buying this car shows how far my life has come in the past two years, from a position where I was feeling completely lost, in a financial hole and believed I had no way out, to sitting down and making a plan, and sticking to it for two years, building up a business from nothing, clearing debts and improving my credit, all very boring and grown up things, and achieving it. 

So many times I have doubted myself, my abilities to do any of this, whether I’d ever make anything of myself. 

And here I am. My business is going great, I support myself and my children and have a comfortable life, we have a nice home, we do fun things, they get new clothes when they need them – I’m not wealthy of course and the clothes are generally from Tesco, but still! 

And I can see all of that and take pride in it – but I still have moments when I feel like the broken shell who was lost all that time ago, and have to remind myself that she’s gone. 

I am the lipstick wearing, room filling smile with a firm handshake. I am a together girl. I am that woman. 

When I need to be. 

Arriving in Iceland

 

For many years I have longed to go to Iceland – of all the places I wanted to travel, it has forever been top of the list, for a string of reasons which include a childhood fondness for Norse Mythology, and the adventures the Vikings had rampaging around Northern Europe, landing on Iceland and creating a new culture because they’d pretty much made themselves unwelcome elsewhere, and a dream of seeing the magical Northern Lights!

Now, I know that isn’t really how it works – you don’t rock up to Iceland in a silly pom-pom hat and just…see the Aurora Borealis – nobody is that lucky, and the chances of getting the right conditions and a clear sky are slim at best – but Iceland has so much more to offer that when the chance came for me to actually go, I threw myself at it, and set to with my notebooks and travel guides, putting together a list of adventures I wanted to have, places I wanted to visit, and experiences I wanted to share – with, of course, the hope that I’d at least see a glimpse of green dancing in the sky at some point.

Our adventures in Iceland were five nights and six days that felt – in all the right ways – like a lifetime of magic and adventure, and I’ll be sharing different aspects of it over a few blog posts in coming days. Nobody in the world ever has a holiday that looks or feels anything like the way a travel magazine or blog can make it seem – but I think my time in Iceland wasn’t just ‘Travel Blog Good’ it was PHENOMENAL, and we got ridiculously lucky with the way we got to experience the country.

It was my first time – but my lovely man has been a few times before, so was able to help me prepare with the right clothes (thermals, waterproof/windproof coat, a ridiculous pom-pom hat and some very good socks!) and to manage my expectations for the Aurora and seeing actual Vikings.

We set off, after some delay (thanks Storm Doris!) and the first excitement was that the Weasley Twins were on our flight out – and I did get a photo with JamesOrOliver Phelps (both of whom were LOVELY, and who only laughed at me a bit when I was the least cool person who has ever accosted them in an airport) but my hands were shaking so much that you can’t really tell who we are, so I shan’t bother sharing it here! My kids were as excited as I was when I told them, so at least they think I’m cool!

Our plans for the first night were to drive north up the coast to our first hotel – the Borealis Hotel, a ten minute drive from Thingvellir National Park, in preparation for starting there to do the Golden Circle (visiting the main highlights of the famous Icelandic natural springs, waterfalls, geyser and such!) before heading a little further north the following evening for a night in a fancy-schmancy hotel with our own private hot-tub under the stars.

That isn’t quite how that panned out!

The storm we’d left England through was heading north, and it hit Iceland as we arrived, with heavy snow the day we arrived, which made our journey to the Borealis Hotel a little nerve-wracking. The roads were covered in snow and ice, visibility was poor, our hire car was dainty, and the sat-nav was determined to send us up what the locals call ‘summer roads’ – narrow lanes that wind through mountains that aren’t passable in winter, and are in fact closed at all times apart from the height of summer!

After battling through the weather, reversing down a mountain with no visibility, getting briefly stuck in a snowdrift, and finally making it to our hotel three hours later than planned (only getting to the door thanks to a tractor with a plough clearing the way up the drive as we approached!) never have I been more pleased to see a welcoming light!

Once we got inside it was even more welcoming, and the glorious barmaid/receptionist told us that we’d missed dinner and the kitchen was closed, but that she could whip up some carbonara for us if we wanted…we wanted!

A (very) short while later, with a bowl of pasta and a beer inside us, we were too giddy to sit in the bar or head to our beds, so we decided to go outside and – as the clouds had momentarily cleared – do a bit of stargazing, take a couple of photos of the night sky, and play in the snow!

We literally stepped outside and walked a few metres to get behind the main building and as he set his camera up, I stood and looked at the sky. We knew we weren’t going to see the Aurora, because the weather was bad and the predictions for Aurora were pretty poor…only, when I looked up…

“Is that the thing? Am I imagining it or is that green? Because it looks green…”

OH MY GOD!

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Image copyright Alex Speed

Look at it! It’s right there! Just…in the sky!

So he panicked and took photos and got very excited, because it NEVER HAPPENS, and I stood like a useless moron and cried at the skies as the colours danced and span and twirled above us, all shades of green, and the camera caught the reds and every hue in between, and we leapt around like crazy people.

Within ten minutes the clouds had flooded back in, the snow had begun to flurry again, and the Aurora had disappeared – and just as we were ready to head inside, another couple came out with a camera and asked if we thought there was any chance the lights would appear tonight…

A couple of snow angels later we headed inside, drank more beer, then hung our wet clothes on radiators and fell into the most comfortable twin beds we’ve ever known (possibly simply because we were so exhausted!)

The following morning, we awoke to even more snow, and severe weather warnings. Our plans for the Golden Circle were off…and our chances of making it to our hotel for the evening, up in the mountains, with the sexy outdoor hot tub…nope. No way we could get close – the roads that way were closed all day because they were too dangerous in the storm – but there was a chance we might make it into Reykjavik if we left immediately. Well, immediately after the plough cleared the road to the hotel, where we were currently stranded…

 

There is only one ‘main’ road in Iceland – the 1 – it circles the country and though there are some good B roads, they aren’t cleared as often by the ploughs as the 1, and so our route of choice to Reykjavik was the 1 – only, as you see in the image above, our simple, 45 minute direct route was…well, not an option! The main road was closed – high winds made driving across the mountain route too dangerous. We spoke to the police manning this blockade and they said our only option to possibly make it to the city was the coastal road. We asked if it was safe. He said “well, it’s not closed yet!” and with that dubious reassurance, off we went!

You can see all the data here from the weather, road closures and wind warnings from the drive. We battled for hours through a blizzard trying to just get to somewhere we could stay – ideally Reykjavik, but as the day wore on and we seemed to be driving for hours without getting anywhere, we just wanted to be somewhere safe.

We ended up making it to a small harbour town on the south coast called Grindavik. Here we were told that every road was closed, that they might open in the early evening if the storm blew over as it was expected to, but that the next few hours were too wild and dangerous for people to be out in.

We found a tiny, harbour side café where we could hole up for some food and warmth while we waited to see what would happen – and were a little thrilled (once we’d managed to battle from the car to get inside, the wind was so strong I could barely take a step, and his glasses were blown straight off his head and the length of the street before landing, chipped, in a snowdrift!) to find absolutely delicious coffee, and the tastiest lobster soup we’ve ever had – salty, packed with chunky lobster pieces, served with fresh bread and bottomless refills!

We spend a lovely few hours in our safe haven – I wrote in my travel journal and filled up on the soup and coffee, enjoying the sense of adventure and uncertainty. My poor chap enjoyed it a little less as he kept tabs on the weather and road updates and tried to find somewhere we could stay, since we weren’t getting to the hotel we had booked, but with all flights grounded and all roads closed, Reykjavik was full and it took a lot of searching and worrying before we managed to book the last room available in the entire city (in a hotel I won’t link to, because though it was beautiful we got overcharged because of the storm, and had no sleep because the staff clattered around in the kitchen – which was next to our room – until well past midnight and from 5am!)

Eventually, as evening began to fall, the roads were opened between Grindavik and Reykjavik – so we jumped into the car and raced (carefully crawled) up the now surprisingly clear road to the city – and once we’d parked and confirmed we had a bed for the night, we found a safe place to sit and enjoy a well deserved beer!

Our first 24 hours in Iceland weren’t anything like we expected – but what an adventure, what a sense of magic and wonder, what an incredible range of emotions and experiences, and thank goodness for beer and brennivin! (That’s the shot you see above; I can’t really describe what it tastes of, but it’s the Icelandic schnapps that certainly warms you after you get lost in the snow!)

Do the thing 

A little over a year ago, with Christmas approaching and the close of a bloody rough year, I sat in a warm, tiny room across from a kind, tiny lady and cried in a way I never had before. 

The kind, tiny lady was a counsellor. One my GP had recommended, and one I just couldn’t afford. I was working from home, part time, a single parent, getting a divorce, dealing with the aftermath of all kinds of awful things I shan’t bore you with, and had been through the freedom programme, a secondary course by the same providers, and some NHS counselling that pushed me to the absolute edge because the counsellor was so terribly, terribly wrong for my needs. 

Counselling is a thing that so few people will speak about. Counselling is hard, and personal, and private. It’s something we all think we should be embarrassed about needing, or wanting, because surely going means you’re broken?

But that’s not true. I went because I didn’t want to be broken. Because I didn’t want to give power to the idea of being broken. Because being broken wasn’t an option. 

And I went, and cried, and gave the kind, tiny lady a piece of my soul – and she cried and gave back a piece of her own. 

Over a year has passed. Most weeks I have seen the kind, tiny lady. For some of them she didn’t let me pay her. For most I insisted on doing so anyway. She wanted to help me at a time I very much needed her help. I wanted to pay for that, because I refused to be dependent on anyone and I knew paying meant I had to appreciate what we had together. 

I’ve seen many counsellors through the years – my life hasn’t been peaches and cream, and I’ve battled against neurological disorders, poor health, poor choices and a string of shitty people. 

Through the NHS you sometimes get people to talk to. Most are disinterested, overworked, demotivated, and your access to them is limited.

 It doesn’t help.

 The pressure on the service means you wait months for someone, get a slither of them, and begin to see your issues for a moment before it’s snatched away and you’re abandoned to coping alone. 

Because the system is so flawed, doctors will Medicate you to help you through a rough patch, knowing that it’s – at best – a band-aid with no stick, and will do nothing but buy another week before you might be someone else’s responsibility, and the system is why so many young people and sick people and sad people and damaged people and lost people don’t make it.

I won’t lie – there’s times I almost didn’t make it. But I have two babies, and not making it wasn’t an option, and it’s not strong that I made it, it’s just that I didn’t think there was another choice, so I had to. 

But without the kind, tiny lady? No. I quite probably wouldn’t have made it. 

When I handed over some of my soul with wet tissues, tears and a sense of absolute panic, and was given a piece of someone in return. I was saved. I would say she did it. She would say I did. The truth is probably somewhere in the middle.

For the weeks and months that followed that day there has been a huge journey – and the person who first walked into that room became someone else, but at the same time just showed who she’d really been all along. Some weeks it’s easy, and funny, and light. Others I don’t speak for 24 hours after I walk out of the door. 

Some weeks I skip out to see friends. Others I climb into bed and sleep until I have to parent again. 

Some weeks I am happy to share where I’m at, and others I’m absolutely incandescent with rage I don’t know how to explain. 

Most of it, now, is just life. Most of it back then wasn’t, or at least shouldn’t be for most people. I was broken, and I have spent many months rebuilding myself from the scraps I’d been left with. 

And it’s hard, it’s really hard, and it sucks. But it’s also amazing.

And some weeks I think about how much I pay each week to do this thing, and what I could have bought instead. 

I could have bought a car, or a posh holiday, or a designer outfit, or some really great nights out, or a very expensive prostitute, or a panda bear on the black market.


But instead I invested in myself. 

Each week I have put that money aside, even on weeks when I didn’t really have it to spare – because it wasn’t spare.

 Some weeks I had the choice between that or buying exciting food – and I chose my mind and health over branded cereal because I know the long term benefit is worth it. That I’m worth it. And even putting that into words shows a journey I’ve been on, because the me who first met the kind, tiny lady wouldn’t have ever thought I was worth investing in. 

I began as a background character in my own life and am now a main role in the days I live through. 

Last week the kind, tiny lady set me a task. It’s one I am really struggling to do, and one I’ve put off for months, and one I don’t know how to even start, and I’m writing this blog instead of doing the thing, because it frightens me, because it is looking a bit too closely at the things that hurt the most from the very middle of that part of myself I keep packed away from the general public. 

It’s all well and good keeping parts of yourself from the world in general – but this is a part I keep from myself, and I’m someone who should really be able to connect with it. 

But it’s hard. Even all these months later, it’s hard. 

But I’ve written this now, and walking into that room was hard that first time, walking into that room has been hard many times, speaking there has been hard, meeting the eyes of the kind, tiny lady has been hard, meeting my own eyes in the mirror has been hard – Christ, breathing in and out and just taking another step has been hard. But I did it. I did it, over and over, so I can do this thing too. If I can face my demons, I can face myself, right?! 

Just do the thing. You’re worth it. I promise. 

Here’s to the ones who dream…

Obviously – to those in the know – my title today is stolen from La La Land (AKA the greatest film of all time, ever, since making films began, and if you disagree you’ll have to do so quietly, or I’ll talk at you with a long list of reasons that you’re WRONG)

The song that is strongly expected to win all the Oscars and accolades is ‘City of stars’ – but it’s not The Song. The Song is Emma Stone’s audition song. The Song is the one which talks about how important it is that the world has dreamers, the ones who dream, foolish as they may seem, with hearts that ache and the mess we make.

That ‘we’ in the song makes it burn even more closely to the little girl who lives inside me.

There are two other moments in the film that make it feel all a little bit too real, and made me feel my feelings all visibly on the outside, where people might see. One is when Seb (The Gosling) says dreamers need to grow up because it’s frightening wanting anything good, and then later Mia (Wonderful Emma) says chasing your dreams just hurts too much, over and over.

Obviously I’m paraphrasing – I’m not going to quote the lines word for word – because the important thing is the message.

We all have dreams. There are things we all want from life. And it’s hard to get to them, to achieve them, to reach our goals – but what if – like the flawed moments in these characters as we watch their story unfold – the only thing between us and our dreams is our fear of never reaching them and the hurt that goes along with the trying?

I have dreams. I have the dreams I’ve tried and failed, and I have even more of the dreams I didn’t even jump for because I was so afraid I’d miss and fall.

When I was younger I had one of those dreams (an actual in the night, sleeping one) that I think everyone has at some point – the one where you think you can fly, and jump off a cliff and magically soar above the world like a bird. Only I didn’t fly, I just jumped and plummeted, and when the moment came that I was supposed to soar, I just…fell. And when I think about shooting for my dreams, I wonder if that was prophetic, and because there’s this tiny voice saying “but what if I fail?” I can’t hear the other voices from all the people who said “but what if you don’t?” and I back away from the edge of the cliff, saying “I’ll do it, I promise, just…not today. Not right now.”

I would love to end this with a proclamation that I’ve changed, that I’ll be flying, that I’ll aim for the stars and shoot for my goals and pick some dreams to really focus on…but I won’t say that. Because then I’ll have to come back and say “I promise. No, really, I will…but maybe tomorrow…”

Because, like they said, it’s scary, and it might hurt.

Endings with endometriosis

Eight years ago I was getting ready to move house, a couple of hundred miles from where I had been living, which was already a good few hundred of miles from ‘home’, and I was going to be in a strange place where the only person I would know was my now ex-husband. I was frightened, but excited. I was unwell, out of work, hardly able to walk, relying on crutches for anything more than very short distances, anxious, and very, very pregnant with a baby I’d been told I would never have.

With endometriosis scarring my insides, the scar tissue and constant bleeding was making my periods hideously painful, to the point that I vomited and relied on strong painkillers from a very young age, unpredictable, so heavy I was constantly anaemic, irregular enough to catch me by surprise every single time, and had been in and out of doctors surgeries and hospitals to try to find a diagnosis and some relief. What I got was poked, prodded, scanned, ignored, dismissed, poked more, told it was kidney infections, told it was in my mind, told it was ‘just how periods are’, and eventually told that I would never conceive children without medical intervention.

Less than a week after a large, Nigerian doctor who’d given me a quite brutal internal exam broke the news that I’d never get pregnant, I did just that. A miracle baby. It changed absolutely everything, and a complex blend of other ‘issues’ meant I was living in constant terror that ‘something bad will happen’ to my baby – and running away to live by the seaside seemed a sensible plan at the time, because I could hibernate with my baby. Turns out that was MENTAL, but hey, you live and learn!

Pregnancy was hideous, I was dreadful at it, my hips fell apart and I was in agony, but I treasured the tiny human inside my insides, and when birthing him annihilated me even further I didn’t care, because I had a miracle baby, and I had been so devastated by the news that there would never, ever be a baby, and the early stages of pregnancy were so dramatic that I didn’t know I even was pregnant until I was close to 11 weeks into it, and had no other reasons to explain the constant vomiting any more so agreed to do a test just so I could be checked for other medical issues.

Afterwards I was advised that I’d possibly never quite recover, and told that it was unlikely such a surprise pregnancy would happen again, and given a coil to stop the heavy bleeding that had been none-stop in the months after the birth. It didn’t help with that, or, apparently, with stopping my shredded uterus from fulfilling it’s only function again, and when my miracle baby was 14 months old I got pregnant again. This time it was even worse, even more dramatic, even more painful, I was on crutches within 7 weeks, in a wheelchair just a few months later (after pretending stubbornly that I could cope right until the moment that a midwife visited unexpectedly because I’d not made it to a group she usually saw me at, and she saw me through the window bum-shuffling across the room to answer the doorbell; she was on the phone to the consultant before I got to the door.) and I spent the last portion of the pregnancy in hospital on morphine before a C-section at 35 weeks delivered my second miracle baby, and COMPLETELY DESTROYED what was left of my uterus.

The scar tissue from that, and from the ever present endometriosis, meant a great many parts of my insides glued themselves together, leaving me with hideous health problems.

Endometriosis isn’t just ‘bad periods’. It’s so much worse than that. It’s the tissue that should be inside your uterus, that tissue that’s expelled by periods, showing up all over the place in your abdomen – in my case, the outside of my uterus, on my ovaries, my fallopian tubes, my bowels, my bladder, my abdominal walls, basically everywhere. This tissue follows the same pattern as that within the uterus – think back to your GCSE biology classes; this tissue thickens, builds upon itself, creates a nice, comfortable cushion inside the uterus, then sheds. Only, when it’s outside of the uterus, it can’t shed in the right way – so what happens is it swells, thickens, cushions, adheres even more to the things around it, fills my abdomen with this swollen tissue (ironically making me look pregnant when I can’t possibly be) bloating me painfully, then it ‘sheds’ meaning it flows around my abdomen, then finds even more places to adhere, more scar tissue grows, making more tissue that will do the same the next time around…

endometriosis

 

 

I have battled since my second son was born to get more medical treatment. I battled to even get a diagnosis officially recorded for what we all knew it was. I bled so heavily I passed out more than once, was in so much pain I threw up a great many times, relied on opiate medication to reduce the pain enough for me to simply get through a day.

The condition also causes massive fatigue, an exhaustion that is so much more than needing a nap, it’s brain fog, inability to form proper sentences (fun when you’re a professional communicator…) a bone deep weariness that can’t be shaken off, and just as you’re finding your feet and feeling like a human it swoops back in and starts all over again.

The treatment I’ve battled for is a hysterectomy – a surgery that, I thought, would take away the thing that causes the problem. But I didn’t fully understand the extent of the problem, or the condition, or what that would entail. I didn’t understand that there’s no way they can remove the tissue that fills my body, the way it’s adhered to everything throughout my abdomen, the way that it’s glued everything inside me together. Last year I finally got the ‘formal diagnosis’ which can only come from exploratory surgery; endometriosis doesn’t show on scans and can only be seen by someone cutting a hole into you and taking a look.

Which is what my consultant did – and then he cut a couple more holes, and poked into those too. He fired lasers (pew, pew!) at some areas that were particularly large to remove the scar tissue, and stitched me up, and where the holes and stitches were became more glue and more attraction for the tissue to adhere to , and those scars and adhesions added the wonderful dimension of tearing to shreds every time I get a period and cramps (creating, as even more fun bonus, even MORE scarring every time! Aren’t I lucky!)

I was told that the surgery could give me five years of relief before I had more problems. I was told that some people get worse, but for the majority there is significant improvement. Remember the coil, that stops bleeding for all but just a tiny percentage? Remember that only a tiny percentage of people get pregnant without medical intervention? Remember how I tend to fall into the small minority in earlier stages of this story…? Yeah…it didn’t bring relief. In fact, since the day I had the operation I’ve been on a much higher dose of pain relief, I’ve bled even more, I’ve bloated even more, torn apart and scarred inside even more, suffered more.

 

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After my surgery the nurse showed me photographs of my endometriosis taken during the procedure – she wouldn’t let me get copies, and I was pretty annoyed – but it looked pretty much like this!

 

I was given the contraceptive implant. The doctor fitting it said “For most women it will stop periods altogether, because it stops ovulation. A very small number of women experience some spotting, and even fewer notice very little difference in their symptoms…”

And then we laughed, because it’s me. We laughed until I cried, because it was kind of the last hope. And, of course, I’m that tiny percentage. I won’t lie and say it’s made NO difference, because it has – I don’t bleed every day. Just two periods a month, which come at surprise times with no predictability, and some really exciting mood swings that make me question whether I’m losing my mind. But I can’t have it removed yet, because I have to give it at least six months to see if things settle down…it’s been four months, and things are NOT settling down, but I have to ride it out, because removing it leaves me with…well…no options. None.

I can’t have the hysterectomy I wanted. I can’t have it because my uterus is glued to everything else inside me. Because removing it might tear the things it’s glued to. Because removing it means that my bowels and bladder might be damaged more than they could be repaired, and any repairs would scar me even more and cause even more damage. Because if that happened I’d be 33 years old with a colostomy bag and a permanent catheter.

When I was younger I wanted four children. Then I was told I couldn’t have any. And then, miraculously, I got two perfect ones. I know that makes me lucky. I know how much luckier that makes me than so many others who live with this condition. I know I’m lucky that I had my kids in my mid twenties, when the damage wasn’t as severe, and that if I’d waited until now I very probably wouldn’t be able to have them.

Knowing that doesn’t make it easier, though, to know that there’s no possibility of having more, and that the not having more is out of my hands, is not a choice I’ve made, is something that’s been forced on me. Does that even make sense? If I could choose, I might not even WANT more, but because I CAN’T, it’s hard. Because this condition is so hard to live with, so painful, so draining, so exhausting, so depressing, so misunderstood, and because there are still so many people who roll their eyes and think ‘you’ve just got a period, most other women manage that without so much drama, get over it’.

And I can’t even take control of the condition itself – I can’t even push for any treatment that might help, because there IS NO TREATMENT THAT CAN HELP. There is literally nothing. There is increasing medication, there is zapping more of my insides with lasers and risking another increase in scar tissue and adhesions, there is…well, that’s it. More drugs and more risks. That’s it.

And now I have to live with this thing in my arm that makes me feel insane, periods that turn up at the most inconvenient of times, pain and bloating, IBS, a constant low dose of antibiotics to battle the UTIs that come constantly (linked to all the scarring from the condition on my bladder and damage from birth) swelling up so much I can’t wear proper clothes, hiding myself in huge baggy jumpers so people don’t keep asking if I’m pregnant, the pain and the pain and the PAIN, and the weariness that is partly the condition and partly the sadness of having it.

But hey…it’s just periods, right, and we all get those…

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For more information on Endometriosis visit https://www.endometriosis-uk.org/understanding-endometriosis and if you think you might have it, be a bit more gobby with your doctor because they can give you pain relief and support that makes it less awful. More women than you think are living with it, I have a number of friends with the condition, and a number of women in my family also have it (genetics are great) and not enough talk about it, because we get embarrassed about periods, because they’re icky.

More icky is the idea that people don’t understand the condition, or how debilitating it is, and the way that so many of us try to ‘carry on regardless’ and live in constant pain because we don’t want to make a fuss.

Screw that. Make a fuss. Make it and make it and make it some more. The more fuss we make, the more research is done, the more we can help people get better treatment in future.

When I had my surgery I was approached by a research nurse who asked if I would be willing to take part in a study into endometriosis and the long-term effects and treatment options. She said not many people had said yes, and I couldn’t understand why. I, of course, said yes – and will be communicating with them twice a year for the foreseeable future because the more information they get, the more knowledge and understanding they have of the condition, the better they can help people in future – and even if I can’t get treatment that helps any time soon, at some point there WILL be a treatment, because they’re searching for one, and it might help someone else.

This week I got a questionnaire from them, and am so glad that I’m taking part, because it’s all I can do to feel like there’s going to be an end to it one day.

Eff my Tourette’s

Tourette’s is a condition that people never used to know anything about and now, thanks to various (often quite low-brow, shock entertainment) documentaries, there’s more awareness – but it usually means misunderstandings.

Usually people laugh at my tics. They laugh more, or politely pretend not to, when I say that I have Tourette’s, or immediately respond by swearing at me (and then laughing) because to most people, Tourette’s means uncontrolled swearing.

For the record, if I swear at you, it’s because I meant it – and I do it a lot, but it’s nothing to do with my Tourette’s, it’s just because I think you’re a dick.

Tourette’s means tics; it means not having any control over verbal or physical tics which can manifest in a wide range of ways. My own particular tics have changed many times over the years, which is generally the standard pattern, and the first I ever had that I associated with Tourette’s was a strange popping sound I made in my throat in my late teens; I was a fidgety child, never sat still, often hummed or popped my lips, and the neurologist I saw in my late twenties who finally diagnosed my Tourette’s (after I’d repeatedly twitched my head away from him trying to examine my eyes, stroked his hair because I couldn’t not do it, said “Meep Meep!” and done jazz hands so often I looked like a sad, drunken Fame dropout) said that those young signs were early indicators of the condition and not, as I’d always thought, just me being a giant pain in the arse.

Tourette’s is also much more than just tics – there are a great many associated conditions which often get diagnosed separately (I was diagnosed with an anxiety disorder and OCD before I got my Tourette’s diagnosis, when in fact those are part of it)

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Currently, my tics are exhausting. My Tourette’s, as with many people, has got worse over time, and if I’m anxious or stressed it’s worse – and a fun additional condition that most people who have Tourette’s have is clinical anxiety, so, yeah…it means that I’m not great at sleeping at night, and the more tired I am the worse it is, and again the condition feeds into itself to make the symptoms worse. I’m still doing jazz hands, or a painful click and point or clap that spasms my arms and hands, or slapping/punching myself in the head, or a fun combination of all of those, while announcing “beep boop!” in a very cheerful way.

Two of the worse – but funniest – examples of my tics getting in the way are often repeated as anecdotes to friends because I find with most things in my life that making light of issues makes them easier to live with. One is from a job interview shortly after I graduated from university (which had been exhausting enough in itself) the two people interviewing me knew about my Tourette’s, as I’d been working for the company for a while and was interviewing for a promotion; they had never witnessed it themselves, but had discussed it with my manager before the interview. In the middle of the meeting, sitting with cups of tea and chatting quite informally, I began to relax and that gave my tics freedom to take over and I shouted “Foot!” and whipped my tea-cup over my shoulder, dumping the contents behind me, and then slapped it back into my lap (leaving a bruise, for further discomfort!) and there was a long pause while everyone processed what had just happened – then the interview carried on as if nothing had happened, with nobody making reference to the puddle of tea on the floor or me rubbing at my bruised thigh!

Another is from another job, a number of years later, when I used to collect a colleague on my way to the office and drive him to work. Again I had told the boss that I had Tourette’s but, like many of us, I have learned to ‘hold in’ my tics when I’m around a lot of people, and it all comes out in the car when I’m alone. Despite not being alone in the car I was very ticky this particular day, and kept clapping, meeping, clicking and whistling, and was about to explain to my confused colleague what was happening when a particularly enthusiastic combination of jazz hands and a slap to the face saw me hooking a finger under the frame of my glasses and flinging them across the car into the passenger foot-well. Not great, considering I was in the outside lane of a duel carriageway doing possibly a little over the limit at the time, and I’m as blind as a bat without them.

“So, I have Tourette’s, which is why I’m twitchy, and I’m going to need you to pass those back so we don’t die in a hideous car crash” I said. Then whistled, and slapped his leg. “Sorry.”

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Back to the swearing thing; we don’t all do it. There are times I wish I did, so I could get away with calling people names to their face more often, but I don’t have that condition; it’s an additional condition that fewer than 10% of people with Tourette’s have, called coprolalia, and despite people with Tourette’s appearing on a number of documentaries now, which I always watch, I’ve yet to see any mention in them of coprolalia, or anyone who has Tourette’s being included in a documentary who doesn’t have the coprolalia – which just continues the belief everyone has that Tourette’s means saying “Fuck” a lot. I do say fuck a lot, but that’s because I’m a bit common, and nothing to do with my neurological condition.

I have a cousin with Tourette’s – he does have coprolalia too, and oddly enough the same birthday as me. That’s got nothing to do with it either. Having coprolalia also doesn’t mean you have Tourette’s, as the condition can be caused by other neurological issues.

My Tourette’s exhausts me, in part from the constant vigilance when I’m out and about so I’m not shouting “Beep boop!” at people in the street or accidentally slapping strangers with my clicking jazz hands, but also from the strain the tics take on my body when I get behind closed doors and let it all go. The ‘tell’ I have that there are tics coming is a strange shiver at the base of my skull, the kind of feeling that you get when you need to stretch then do a really good one, and there are times when I do one big tic and the feeling is satisfied, and goes away – but often the tic wasn’t ‘right’ and has to be repeated, which gets more and more painful (particularly when the tic is punching myself in the throat) – and when I say it has to be repeated I don’t mean that I’m willingly slapping myself to get rid of a feeling, but that I have absolutely no control over my body when these things are happening, over and over again, causing bruising and muscle strains and cramps.

It’s been a game to people over the years to do things that set my tics off, because they find it funny, and there are times when I don’t mind that, when it’s affectionate, when close friends or loved ones tease me about me wrinkling my nose like a rabbit, mention of which immediately makes me do it (as does anyone touching their nose or referencing their nose near me, it makes mine feel tickly) but in one previous job the manager told the whole team about this quirk, and it just never stopped, all day, every day, the people I was supposed to be senior to making me “do the nose thing” to distract me from my work all day, making my nose bleed because I was rubbing at it so much – but I couldn’t not rub at it when it was being referenced all the time.

The tics also make me lose my train of thought and, when it’s a bad day, make me woolly headed and distracted, and that’s a pain in the arse when you’re in a disciplinary meeting with a member of your staff who keeps “making you do the nose thing” when you’re trying to talk to them about their lack of respect, but you keep doing the nose thing and can’t remember where you were, and just come over unprofessional and hurt yourself.

I’ve written about my Tourette’s before – probably with the same comedy anecdotes – on other blogs and for publications, and everyone close to me knows that I have it, and those who love me can get away with laughing with me about it on the days I’m ok with it, or copying my ridiculous jazz hands and the phrases I shout out, but someone who didn’t know me well laughing would still hurt, and being mimicked by a group of teenagers at a bus stop never feels good.

But I’m writing about it again today because today it’s making me cross. Today I punched myself in the nose, which made it bleed. Today I am exhausted from looking after a poorly child and haven’t had enough sleep, and am furious that my own body is betraying me in a way that is so painful and so draining when I’m already so tired, I have bruises on my leg from slapping it, I have put my shoulder out doing click-clap-jazz hands, and my five year old son keeps slapping himself in the head to “Be like Mummy” even though he knows I don’t do it on purpose, but he doesn’t really know how else to sympathise.

Sometimes it’s fun. I wish the verbal tic that made me shout “gerbil!” had stuck around longer, and jazz hands can, at times, just make me seem fabulous – but today it’s shit. It’s totally, totally shit, and it hurts, and I’m too tired to reign it in, and I just want to lie down, but if I do that I won’t feel rested because I tic all night in my sleep too, and am currently just waking up aching all over and feeling more weary than before I went to bed.

So far I’ve not been medicated specifically for Tourette’s – I have anti-anxiety medication which helps to stop the crazy that runs away with my thoughts, and enables me to rest more, and I have had sleeping tablets when it’s been really bad before, but that’s as far as we’ve ever gone, but in recent months the Tourette’s has become more and more pronounced, and I’m beginning to think I’ll need to explore other options with my doctor, which means having to go and ‘let it all out’ in front of someone else to ‘prove’ there’s an issue when, in all the time I’ve known my GP, I’ve managed to restrain my tics in front of him, because that’s what we do.

Now that I’ve written all of this about my Tourette’s I am ticking like mad, because thinking about it or talking about it makes it so much worse, so I’m going to go and sit in the dark somewhere. If you want to know more about Tourette’s, visit Tourette’s Action who have some great resources, and if you’re making any documentaries just casually slip in there the ACTUAL NAME OF THE CONDITION YOU’RE SHOWING. Just a thought.

 

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Also, don’t buy me this; I won’t laugh. I will call you a cunt.