Little boxes

I like to compartmentalise things. I’ve always done it, it makes my life easier to manage if things stay in the boxes they’re supposed to. I can choose to share those boxes with different people – some have access to all of them, some just have access to a single specific box. Some people earn my trust and are allowed to open new boxes along the way. Some people are never allowed in because it’s easier that way.

Apparently my therapist tells me that’s not an entirely healthy way to be. Pfft.

So I’m working on it. I’m working on a lot of things actually. I don’t think I’ve ever been quite this vulnerable before and it’s terrifying. My safety net of closed boxes are having to be opened one by one. Sometimes I find that the thing I was expecting to find in the box isn’t quite as scary as I thought – the thing I thought was a monster is actually just a scared little kitten. Sometimes I want to shut the lid back on the box as hard as possible and never open it again. So obviously they’re the ones I have to open up and deal with. And I don’t like it. Pfft.

But while I don’t like it. While it’s uncomfortable. While it’s hard. While it hurts. While all of those things, it’s working. I’m slowly healing cracks that I didn’t even know needed healing, I’m finding pieces I didn’t know were lost, and all those boxes are starting to come together like parts of a puzzle. I’m not whole yet, and there might always be a missing piece here and there, but I’m a work in progress. And that’s a powerful thing to be.

I see you

For a change, the words in the quote above are my own. I wrote them while sat in the pub at Amanda Palmer’s pop up event a few weeks ago, surrounded by so many beautiful people and truly feeling seen for all that I am.

Because sometimes we need that far more than words or validation. We need someone in our lives who sees the parts we keep hidden from the rest of the world. The secret desires, the irrational fears, the hurt and the love and everything in between. If we’re lucky we have enough people in our world that can each see something different in us, and that’s enough, but when someone sees everything, puts all those pieces together, and can honestly say “I see you”, then the love and acceptance that comes with that doesn’t need to be said.

And that’s a very powerful feeling. One that I cling to when the world threatens to overwhelm me. Because as long as there is someone there who sees me, then I will always have somewhere safe to go.

A tangled spider’s web

Well I’ve been looking for the inspiration to write for a while now, and I think this might just be the not so subtle slap in the face I was looking for!

I started seeing a new therapist a couple of months ago. She’s Irish, and says things like “hmm, interesting, we’ll come back to that”, and I scowl, knowing she’s picked up on the one thing I was hoping she wouldn’t notice. She’s either perceptive or a witch. My money’s on the latter. And I mean that in a complimentary way. But after a few sessions of figuring each other out, we talked about boundaries and whether I have them. Unsurprisingly, I don’t have many. The only boundaries I ever set are the ones that I throw up when I shut down from the world completely. Not entirely healthy either. So we’re working on it, and any part of working on it for me is to put it down in words to try and make sense of the tangled mess that is my head sometimes.

So here we are.

My mood can switch in an instant. On a really good day, I can go from being on top of the world to a pit of despair in about three seconds flat, which you have to admit, is impressive in itself. But all it takes is one intruding thought, one flippant comment from someone, one unpleasant memory, and boom, my mind has flipped 180. And it’s exhausting, both for me and for those around me I expect, never knowing what’s coming next or how long each mood will last. The upside is that just as my emotions can plummet suddenly, they can shoot back up just as quickly, and I’m learning to counteract that one intrusive thought with a positive one or that one unpleasant memory with one of the million more pleasant memories available to me. But it’s hard damn work, and it would be so much easier if my emotions didn’t depend so much on perceived outside influences, and instead were happily independent and able to make their own decisions! Because aged 32, I should not still be upset because I see someone prettier than me, or I don’t hear back from someone I wanted to talk to. But sadly, as of yet, no one seems to have convinced my inner teenage mind, which I swear is still stuck somewhere around 17, that it should have grown up by now.

And here’s where it gets interesting. I had some pretty unpleasant experiences around that age, during my “influential years” as my therapist calls them. And while I’ve grown up in so many ways and am capable of dealing with a lot of what life throws at me these days, it seems there is a part of my brain that got stuck, that never quite left behind my 17 year old self, and consequently is prone to teenage self defence mechanisms that I probably should have long since left behind.

But, on the flip side (because I will always take the wins where I can), I have moments of the absolute assured self image that only a teenager can have. I had a remarkably good sense of who I was at 17 and I’m pleased to say I’ve never lost that, I’ve only come to be more and more confident with it over time. And those moments are awesome. In those moments I can, and do, take on the world. Admittedly, sometimes that translates into impulsive, not so sensible ideas, but I like to think I take 5 out of 6.

And so I have to learn to find the elusive balance somewhere. Crazy highs are only a good thing when they can’t be brought crashing down by one single moment of negativity, or equally carried away by impulsive, irrational decision making. Both of which have a knock on effect in the aftermath, be it crippling self doubt and an absolute loss of motivation for anything or anyone, or the regret of having done something so stupid, and usually irresponsible, that I will probably regret.

Acknowledging it is the first step, that’s what they always say right? So now we just have to figure out how to tame the wild little girl inside my head.

“Write what should not be forgotten”

My therapist asked me last week how I was feeling about my latest miscarriage. Well actually, what she was specifically asking was whether I was dealing with it or if I was feeling emotionally detached from it all. The fact that she was even asking the question at all tells you that it was the latter. Which isn’t to say I wasn’t upset – I was, I am – I’d howled at three in the morning, and gotten angry at the gods and the seeming injustice of it all. But they were fleeting moments, gone almost as quickly as they’d snuck up on me, leaving me as emotionally empty as the hole I felt physically. We talked about why this might be – was I protecting myself, was I in denial, had my emotions just shut down? But in the end I realised it was none of those things, it was simply because I hadn’t yet put pen to paper and written down the words. With everything swirling around in my head, not to mention the practical aspects of hospital appointments and what felt like a hundred blood tests every other day, I didn’t have any chance to stop, to reflect, and to make sense of anything. Once I started writing, I knew I could start recovering again. So here I am.

When I had my first miscarriage, I remember discovering the 1 in 4 statistic and finding some comfort in it. If 1 in 4 pregnancies ended in miscarriage then this was quite normal and likely nothing to worry about. I’d be lying if I said that now, after 4 pregnancies and 4 miscarriages, I was still quite as comforted. If anything I’m just incredibly frustrated. Upset and sad too of course, but honestly, more than anything I’m just so frustrated to repeatedly get to the same point each time, only for the same outcome to occur. This time round I was determined to just take each day as it came, to enjoy the feeling of knowing I was pregnant, and to stay hopeful. And I’m glad I did – I don’t want to spend every pregnancy being convinced it’ll all go wrong and being pessimistic. Cautious yes, and carefully hopeful, but not miserable. And actually this one was going fine for a bit – I had all the usual symptoms, and just like before, I knew I was pregnant well before I could take a pregnancy test – the nausea, the weariness, the sore boobs, and the odd copper taste in my mouth. But then came the moment I’d been dreading. What had started off as light spotting suddenly because much more and I knew almost instantly what had happened. I can’t describe exactly what the feeling is, it’s just an inevitability, a resignation of what’s to come. While there are a hundred different reasons for bleeding in early pregnancy, and I will always try my hardest to hope that it might be nothing to worry about, ultimately I know my body well enough to understand what’s happening. And just like before, I knew when there was no longer a hooman growing inside me.

But this time has been different in many ways. For one, it’s been 3 and a half weeks now and I’m still bleeding. I’m also still showing a positive on every test I take, despite having had an ultrasound to show that there is no pregnancy tissue left whatsoever. I’ve had scares of eptopic pregnancy and threats of a ruptured fallopian tube, but ultimately nothing that is showing up on any of my scans and therefore slightly baffling my doctors. But on the plus side, I’ve at least had the opportunity to have scans, I’ve been seen and so well looked after by the Early Pregnancy Unit, and my GP has been incredibly supportive. It’s opened up discussions that previously haven’t been had, and consequently I’ve been referred to a clinic specialising in recurrent miscarriage. I cannot explain what a relief this is! I’d previously been referred to the hospital’s Fertility Clinic, who were great in that they did a whole bunch of tests, and we ruled out anything terrible, but at the same time, being a fertility specialist, they don’t really have anywhere to go after the tests all come back normal. Their inevitable next step is IVF, but getting pregnant isn’t my problem, keeping hold of the little peanut is the issue! So while I’m not pinning all my hopes on finding a magical answer at the Recurrent Miscarriage Clinic, I am at least looking forward to hopefully having a specialist who doesn’t say things like “well at least you know you can get pregnant”, and expecting that to be reassuring.

At some point we will have to make the decision around how many times we continue to try, at what point it becomes too much for both my body and our emotions to cope with. This time round has by far been the worst physically – my body identifies the process as trauma, and so has triggered one of the worst Lupus flare ups I’ve had for a long time. I feel like I’ve slept almost constantly for the last three weeks, and only now am I beginning to wake up in the morning at a normal time and not in a whole world of pain. In a strange way I’m quietly grateful for it though – without the physical symptoms, I’d have probably gone straight back to work and ended up in a bit of a mess. Being forced to rest and made to take care of myself has been what my body and mind have both needed, and ultimately I’ll be better for it in the end.

Right now, all I can focus on is just getting to the end of this miscarriage and fully recovering from the Lupus flare. I’m trying not to let thoughts of further pregnancies and subsequent complications take over my mind, hard as that may be. I don’t have much control over what will happen, my body will ultimately do whatever it feels it needs to, but I can at least deal with the here and now. I can grieve for the loss of what could have been and what this peanut might have grown into, and I can do what my body needs me to do and get plenty of rest. Anything further than tomorrow doesn’t need thinking about right now – as Hagrid wisely said “What’s comin’ will come, an’ we’ll meet it when it does.”

The stormclouds in my head

I’m fighting sadness at the moment. Which might not sound all that surprising for someone who has depression, but this is not usually how depression works for me. Usually it’s a numbness, a lack of enthusiasm, of motivation, but not usually a sadness.

It’s been all-consuming the last couple of days and I don’t know where it’s come from. Because I’m not sad. I’m not sad *about* anything. I just feel sadness. Sometimes I can pin these things down to my cycle, my hormones, a specific event that’s happened or is happening, but none of them seem to relate this time round.

I cried a lot of it out last night. Since I’ve learned that “happy puppy stories” help me cry (as opposed to “sad puppy stories”), I binge watched New Amsterdam and cried at almost every episode. It helped. If there’s one thing I’ve learned over the last six months or so, it’s that being able to cry is a literal life saver. But I still woke up this morning feeling the same, and I can’t spend all week watching Netflix as a coping method.

So here I am, trying to write it out instead. Trying to put into words what the storm clouds in my head look like.

It’s not an angry storm. Not violent or scary. It’s the colour the sky goes just before a storm is about to start. That kind of bruised yellow colour, that’s both comforting and intimidating at the same time. You almost don’t want it to go away, it’s that ethereal, in-between kind of nothingness and everything at the same time. You know the sunshine was there before, and you know the thunder and the rain are going to come, but you’re in this limbo, the time between the two, where both magic and fear exist. Do you give into it? Dissolve into the clouds and become lost amongst the yellow. Or do you fight it? Desperate for the storm to break, for the rain to pour and the thunder to growl. Or do you wish for the sunshine and the light that’s no longer there? Wishing for something that cannot be, it’s like fighting the impossible. You cannot change what has already passed.

It’s exhausting. It’s like a whirling storm inside my head – from the sunshine, to the yellow, to the thunder going round and round, repeating on a loop, never stopping to let me breathe and just be. I don’t want to constantly be waiting for the next cycle, the next feeling. I’ve done a lot of work over the last couple of years on identifying and naming emotions, and then just moving on. And I’m good at it. But it only works when I’m not being bombarded with feeling after feeling after feeling. It’s no good identifying an emotion, letting it go, only to have the next one appear straight after. It’s like a constant stream of trains whooshing past, never stopping to let anyone on or off. After a while the passengers on the platform become dizzy and lost, unable to move forward or backwards, seeing nothing but the whoosh around them, unable to focus on anything.

So maybe it’s not sadness I feel. Maybe it’s exhaustion. Maybe it’s just an overwhelming sense of being. Of everything. Identifying it is half the battle, but the hardest half for me, always. Now I have to figure out how to calm the storm clouds. How to get them to just rest, for just a little while, to take a break and maybe give me some time to breathe. I haven’t quite worked out how to communicate with them yet, but I’m a writer and a linguist, I’m determined to learn their language and be at peace with them one day.

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Somewhere between stubborn and organised

There’s a lot to be said for being surrounded by people who, even if they can’t know how you feel, do what they can to empathise and learn how to help. I’m incredibly lucky to have several people who I know I can go to when one or other of my illnesses gets bad, and honestly when one of them says “I was looking up X on the internet…..” my heart melts a little.

I’ve been so overwhelmed by my up and down mental health over the last few months that my physical health has taken a bit of a backseat. Which is not a complaint – being depressed *and* in the middle of a Flare is not something I relish – but it means that when one of my other illnesses does start to play up, I find I’ve almost forgotten how to deal with it. The pain and fatigue are there every day, so it’s not like it ever truly goes away, but it has been pretty manageable for the last few months, so much so that when my body started really letting me know how it felt this last week or so, it came as a bit of a shock. Getting out of bed this morning, my back, shoulders, and hips just refused to work properly – this hasn’t happened for a while, and I can safely say I haven’t missed it! With some gentle stretching and a handful of pain meds it eased up enough to be only mildly inconvenient and I could get on with my day.

I’m pretty sure I can avoid a full on Flare if I’m careful. And I need to be careful – I’ve got a four day work trip starting on Monday, so any kind of flare up can absolutely do one. So I’m in battery saver mode now. Just like when your phone turns off all the non-essential functions and conserves what little energy is left, this is exactly what I’m doing. Admittedly one of my non-negotiable, critical tasks today was to head to Dominique Ansel to get Cronuts, BUT, that’s all I went for – instead of spending the day in London like I’d originally planned, I came back as soon as I’d had some proper food for lunch and had my Cronuts safely in my hands. I also have an entire bag of goodies for a perfectly pampered evening – beautiful smelling bath bubbles, three different hair dyes (because decision making is not my strong point), a face mask, and clean pyjamas. Bliss.

Tomorrow I need to pack and locate my passport (it’s around somewhere……), ready to leave for Budapest on Monday evening. Travelling is always incredibly tiring, and travelling for work even more so, so I’ve done everything I can to make it as easy as possible. I don’t want to have to wait around for my bags, so I’m only taking hand luggage. This is fine, but when I have to remember to take out my laptop and my millions of clear plastic bottles of make up and shampoo at Security (as well as taking off my boots and jacket of course), I always end up trying to gather everything up at the other end, and awkwardly holding at least five different things, half of which are too heavy, and before I’ve even got on the plane, I’m feeling it. I am determined to be super organised this time and make it easier on myself – I’ve made sure I have everything I need today, as opposed to at 7pm tomorrow when all the shops are shut and I’ve run out of time. I want to be able to sleep well tomorrow night, not lie awake thinking about all the things that I should have done and what I’m going to do about the things I haven’t. I want to wake up on Monday morning, grab my already packed bags, head to the office and calmly get my taxi to the airport. An alien prospect to me – I am the least organised, most anxious person 99% of the time – but just this one time, it would be nice to feel smugly in control. I’ll be sure to report back how it goes……!

Have the courage to be vulnerable

I’ve written about vulnerability before and for my love of Brene Brown, but it’s been playing on my mind again recently, making me think about what it means to be vulnerable in certain aspects of our life.

It’s uncomfortable and it’s scary, that much I know. But it makes me realise that it impacts every aspect of my life – work, relationships, friendships, health – and that if I don’t embrace it, I won’t fully give myself the opportunity to get what I want and what I need.

But what does that actually mean?

Well first and foremost, it involves being honest, not just with others but with yourself. If you can’t be honest with yourself then you will never be able to identify what you need to move forward. For me, this is the hardest part, I can lie to myself a hundred times over if it makes me feel better. Feeling better isn’t always making the situation better though. It’s a temporary fix, nothing more. Being honest for me usually involves writing as much as possible down – sometimes on here, sometimes in my journal, sometimes just on the nearest bit of scrap paper I can find – but one way or another getting it out of my mind and being able to “see” it in front of me. Then I can start figuring out what I’m feeling and where it’s coming from.

Then comes sharing with others. This is where I have no middle ground – I either share everything or nothing. Boundaries are not my strong point! And I worry sometimes that I share too much. I cross post a lot of my blogs to Facebook, albeit to a limited group of people who get to see it, but it includes people I work with, family, people I don’t see all that often, and I worry that it influences their view of me. But along with vulnerability comes being authentic. I have such a passion for bringing your authentic self to every situation (fueled by listening to the amazing La-Chun Lindsay at a GLTBA conference a couple of years ago!) – I honestly believe you make better and more fulfilling connections by being honest about who you are. But it can be scary to put yourself out there, you have to be vulnerable and you have to be comfortable with being uncomfortable. Nine times out of ten though, the benefits absolutely outweigh that fear. I lose count of how many people I’ve come to know better, to build a connection with, people I’ve learned about, and mutual help and support I’ve given and received with sometimes the most unexpected people.

Finally comes asking for what you need. Quite frankly, I’m terrible at this too, but I do find that having gone through the above process, I can at least identify my needs a little easier. Sometimes it’s help, sometimes it’s reassurance, sometimes it’s someone to listen to me, to help me break things down into manageable chunks. I find it extremely hard to ask for what I need, but almost every single time I’ve managed it, I’ve felt such relief afterwards. I should add that I don’t always get what I want – asking doesn’t always mean getting – but just by articulating my needs and my feelings, it’s like a weight being lifted from my shoulders.

And so that’s where I am today – trying to remind myself that sometimes we have to be vulnerable to be heard, we have to be honest to get what we need, and we have to have the courage to speak out. It, and I, are a work in progress, but we’re getting there.

Find your tribe and let them in

I didn’t want to leave this for days, weeks, months on end after my last post. I’m not sure how many words I can find, but I want to give it a go.

I cried. A lot. That’s the first thing to say, and oh god it was such a relief. It was also messy, and scary, and uncomfortable, and happened at about 1am, because of course it did. And you know what set it off? People being nice! I realised that maybe I’d been doing it wrong – watching all the sad puppy videos was never going to work, I needed to watch the happy puppy videos! You guys were the happy puppies, so to speak. I was so overwhelmed with the love and support I received in response to my post that I just lost it, in a good way. So thank you! You made this scared, sad, lost, girl, feel again, and I am so grateful.

Secondly, I spoke to my therapist and we have a plan of action. Just having that makes me feel a little safer and more hopeful. We started this last week by working to double my meds. I have to hope to god this works, because any higher and we’ll be out of baby safe range. So far so good. I also have emergency meds to take if and when it gets quite so bad again. So I feel like I have a bit of a net there to catch me if needed, and I’m hopeful these steps should help balance me out a bit.

Thirdly, I’ve been meaning to write about what creating and being part of a Tribe means to me for a long time now. I never quite get round to putting it into words, but if there’s one thing this last week or so has taught me, it’s the importance of having those people around. It’s about the people who come into your life and make you want to be a better person, help you grow, help you understand yourself and others around you. I am so lucky to have people in my life that do that. That I can spend time with and not just feel better in terms of being consoled, but feel better by being made to feel strong, by remembering I have people who will fight with me, whatever the universe (or my own mind) throws at me.

And I don’t just want that for me. It was a huge part in finally feeling brave enough to have children (or child actually, to be more specific, but “have child” sounds awkward!). I never believed that I could be strong enough mentally or physically to raise a child, but I came to realise that I wouldn’t be doing this on my own. I wouldn’t even be doing this just with Jon. I have the most amazing support, both practically and emotionally, that if I was willing to ask for what I need and let those people help, then I could do this. I’ve always loved the old stories where the children are raised by the village, or where there are a hundred cousins and a million different aunts and uncles. Those aren’t realistic options for me, or indeed for most people these days, but that doesn’t mean I can’t create my own tribe, and that tribe can look however we choose to make it look. Families no longer look like the traditional Mum, Dad, and 2.4 children these days at the best of times, and I have never been traditional in the way I look at the world, and actually for the first time in my life, I’m excited and proud of that. I have so many incredible people around me, some who are close, some who are far away, some I see once a year, some I see almost every day, some I’ve known for my whole life, some have come crashing into my world in the last few months, but one way or another, I want each and every one of those people to be part of helping shape and influence my life and hopefully my child’s life too. I want them know, like I do, that there are so many different people to support them and guide them through life, because honestly, that freedom and that strength is invaluable 💛

There’s a storm inside my head

So, I’m not okay. Hardest three words to say sometimes, but they need saying.

I’ve been struggling since before Christmas. I always get myself tied up in knots during December – as much as I love Christmas, it is by far the most stressful time of year for me. I then make really bad decisions and rely on unhealthy coping methods to get me through, resulting in spending January in a guilt induced haze about everything I haven’t done.

And that’s where I am now, the guilt induced haze. Depression and anxiety have kicked in at the same time, meaning not only do I have no motivation to do anything or see anyone, I then get anxious about all the things I haven’t done and all the people I haven’t seen. It’s a vicious circle and one that right now, I barely have any energy to try and break.

I’m sleeping too much, which sometimes I can put down to low spoons and my fibro kicking in, but as I lay in bed the other morning, I realised I was too scared to open my eyes. It wasn’t even about getting up and functioning, it was about not wanting to make everything real. If I keep my eyes closed and stay asleep, nothing hurts and I can stay hidden. When I hear my phone buzz with a message I want to read or I know there’ll be coffee just as soon as I’m up, and I still can’t bring myself to open my eyes, I know there’s a problem!

I don’t like feeling like this. I mean, I realise that’s probably obvious, but I’m past the point of wallowing in it and just want it to go away. Actually at this point, I’d be happy to just have a good cry. I haven’t cried in months and I’d give anything to be able to let it all out and feel better, even temporarily. But there’s nothing. Not even when watching adverts of poor, maltreated pooches, which is always the quickest way to make me blub! Still, not even a tear!

I need an out. I’m not sure what that out is yet, how I make this better, what needs to change, or what I need to do, but I will figure it out. Or at least my therapist will help me figure it out I hope. Despite all of the nothingness and the meh and guilt, I do know I have amazing people in my life, and even if they don’t know it (and even if I don’t always show it) they keep getting me out of bed in a morning, they let me be who I am and love me regardless, and for that I am eternally grateful.