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. 

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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…

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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.