Lost inside: where am I? (my experience with PMDD)

Audio version of this blog available here or search for 'The Silent Why' on your podcast player.

When I started The Silent Why podcast I had to put a few parameters in place to define a 'loss' before it could make it onto our 101 Losses List. My husband and I came up with one rule: it has to be something the person has lost and can't get back again. And that’s what we’re focusing on for our 101 losses.

But, there are many losses in life that we do get back again, and then maybe lose again.

For example, temporary loss of self.

We all have bad days when we lose a sense of who we are and our reality, when things feel bigger than we know they actually are and when anxieties, stress, and frustrations take over. When these are every now and then they're fairly easy to suck up or tolerate, because the tide soon turns, but sometimes we lose a sense of who we are for longer, and the option to just 'pull yourself together' isn't there.

Whether due to a medical condition, trauma, grief, or extreme anxiety, losing a sense of who you are for days, weeks, months, maybe even years, and not being able to piece together the fragments of life in the way we normal can, is confusing and scary.

As a motivated, fairly laid back individual this was a new experience for me, and it's only now, as I sometimes get more good days than bad days, that I'm able to look back and see it for what it was.

I started feeling ‘not right’ in 2016, around 18 months later (after trying everything) I was diagnosed with something called P.M.D.D. by a consultant and neither me, nor my doctor, had ever heard of it. It stands for Premenstrual Dysphoric Disorder and basically means I'm super sensitive to hormone fluctuations, which left most of my days filled with anxiety, irritability, anger, feeling overwhelmed and what I would call 'antsy' (plus some physical symptoms thrown in for free). It would be another couple of years before anyone tried to actually treat it, or knew how, and another two years after that when I’d reach the end of the treatment options with a hysterectomy at 38 years old.

Dysphoria actually means; general unhappiness, restlessness, dissatisfaction, or frustration. And 'dysphoric' means difficult to bear. Which to be honest, sums it all up perfectly. I was generally unhappy, restless, dissatisfied and frustrated, and it was indeed ‘difficult to bear’.

Life was so different to what I knew and for so long we had no idea why.

Harry Potter: Is this all real, or is it just happening inside my head? Dumbledore: Of course it's happening inside your head Harry. Why should that mean that it's not real? — J.K. Rowling, Harry Potter and the Deathly Hallows

It's the powerlessness of it. I was a detail person, good at conversation, not easily shaken, pretty much unshockable in conversation, reduced to a nervous, subdued shell of what I was, worried about a basic trip to the supermarket. Little things felt a big deal, big things felt overwhelming. You want to check out of daily life and hibernate till it's over - but the capable side of you won't allow that, so you try to fight it and act like all is great.

Even now I have to fight to not perceive myself as weak, that I have something which stops me controlling my own brain, but also how I am when PMDD takes hold. Like a lot of mental diagnosis' it's not a very definitive path to work out what's wrong and so you spend a lot of time wondering if this could possibly be right?

It's not easy to sit back and accept a diagnosis like this, but then one day you have to, because there's no other option. You have to learn how to ride it out and how to live your life on bad days beating yourself up as little as possible. You have to squash the 'maybe I'm just imagining it' and 'you're just lazy' thoughts and the 'pull yourself together' comments and be kind to yourself. And then, you get a day when your head is clear, you feel like yourself again and you realise - that's not who I am, something bigger had hold of me. And you mistakenly think; ‘I'll be stronger next time’.

Because I'm a writer and I wanted to verbalise it while I was in the middle of it, in 2019 I sat down and wrote down what it was like to be in the throws of PMDD.

I have a feeling anyone that has experienced feeling ‘out of themselves’ due to any mental condition will identify.

This is what I wrote...

******

June 2019

In searching for a way to describe how PMDD feels I've come up with an analogy.

You know those big mascot costume suits that people wear at Disneyland or by the side of a sports pitch? Usually in the shape of an animal or bird, or maybe even a combi-boiler (West Brom’s football mascot in 2018). Well, it’s a bit like one of those.

I don't mean viewing the mascot from the outside - soft, cuddly, a hero come to life, perfect for a photo opportunity with your face pressed into its soft fur (maybe not so much in the case with the boiler). No, this is from the point of view of the poor human inside the suit. Hot, uncomfortable, awkward, confused, basic movements hindered and a general questioning of how they got there and whether anyone would still want to hug them if they could see what was inside.

The key thing in this analogy is that it's not like wearing one of these suits, it’s like wearing an invisible one.

Let me explain by guiding you through an average day:

From the moment I open my eyes I feel it on me, around me, I’m zipped in and there’s no way out. My joints ache. I’m uncomfortable right into my head and this makes me angry and fed up with the world before I’ve moved a limb.

As I try to get out of bed it’s harder than usual. There’s no spring in my step (and I'm usually I’m a morning person) because I’m weighed down by invisible, heavy fluff that I didn’t ask for or want. Every movement feels laboured and frustrating. I already know that speed, grace and fluidity are not words I will be associated with today.

My vision is impaired (not literally) but what I see around me and what needs doing isn’t processed clearly, as if it’s being viewed through meshy eye slots that take away the clarity of the situations and environments.

Functioning around other people can be done, but extra care has to be taken with words, movements, actions and even thoughts. I’m pretty sure I've perfected this to the point people have no idea the suit is there at all. The daily communicating with others via technology has allowed me to hide my struggles as needed and a grinning emoji or joke is easily sent while crying inside my oppressive cage.

My brain is foggy, I have no idea how to make conversation, I’m instantly angered by anything at all, and a million imagined conversations go round my head like socks in a tumble-dryer. It's hard to explain to people I don't feel right - because on the outside I know I look fine. They don't see the effort it took to put on my make-up, or that my hair is pulled back because trying to style it is too much to think about, or that when I get home or get two minutes alone anywhere, I'm just exhaling and trying to psych myself up for the next challenge.

As I return home from being in the outside world, and move my extra weight through the door, I am shattered. Drained. Ready to collapse or sleep, but getting comfortable feels impossible and the itchy, antsy tension in my body partners in an evil union with my brain to tell me it’s lazy to rest. Even reading a book is too much and falls by the wayside (and I used to get through five books on a week long sun-lounger holiday).

Add in something like processing childlessness after infertility and... well, it’s no picnic at the zoo (one of my favourite things).

It's claustrophobic, I live with a feeling of desperate disappointment about who I am, what I've achieved (or not achieved) and who I've become. I am gutted by the lazy, tired, confused, mainly horizontal person I am carrying around, and well aware of all the ways others feel let down or assume I could do better.

The few times I attempt to tell someone I didn't 'feel right' (now I've got to the stage of admitting something is off) I feel like a fraud. After all, how I present myself, how I get on with life, and how I seem when I’m out doesn’t look like I'm struggling. The problem is an internal one, and it's hard to prove you're broken inside.

I envy those around me who are just physically tired, without the added loss of a sense of self, but you can't compare or mention it because looking at my life, there's no reason to be as tired as I am, and I worry people will just think me weak. Especially at a time when many around me are raising children, and my life looks so simple and peaceful in comparison.

Life in my suit is lonely and I constantly, but silently, question my patheticness. Or I use the TV to distract me from it, as I join the normal worlds of other people and live life through them, fascinated by their energy and drive and wondering if I'll ever be like that again.

This week I walked past a piece of something on the carpet on the stairs, might have been fluff, might have been food, I know I should pick it up and bin it, but I walked past it for days unable to reach down, the energy of it all being one decision too many to bear. Even now as I type that, it feels pathetic and I judge myself for it, it's not who I am, I'm not a lazy person, I like a clean house - stupidly clean - my usual behaviour is to spot it, go back for the vacuum and end up doing the whole stairs. The fact that I didn't, just tells me how mentally detached I am from my norm. When you're observant and notice a lot of things, but are unable to act or even think on them, it's draining and stressful.

I dread my phone pinging, praying it wouldn't be anyone but my husband, because the energy and effort it took to think of a reply was ridiculously magnified out of proportion.

A generous freebie that comes with the suit is the constant anxious feeling that’s stitched into it. It’s as if something you genuinely fear is nearby, but it’s not, and there's no conceivable reason to assume it would be.

If I need to cry I find a quiet place away from others and let the sadness flow, it feels like a welcome release but afterwards the expected relief isn't there.

Every minute in the suit is a battle against my own thoughts to find truths that don’t suggest all is doomed, and others sharing what they're struggling with feels like extra pounds of weight are being added to me with every word.

At Pilates or yoga (the only exercise I can manage, sort of) it's difficult to move my heavy limbs in the way I know they would normally be able to do, I lift a leg and I can feel it shaking with the effort, and running is near impossible. I’ve acquired a reputation for not liking walking or exercise and I wonder how I can be so unfit compared to others with less healthy lifestyles. I now find I walk up the stairs like a 90-year-old, instead of running two at a time like I always used to.

Sometimes I think if people could see the suit, they’d understand how well I’m doing, see the effort I’m putting in, and how much I'm trying, in spite of it. Then they’d know it’s harder for me compared to other people, but it doesn’t stop me trying.

And so I plod on. Efforts to explain it seem to leave others baffled, and attempts to show them the invisible suit just confuse.

So life is different on these days.

On the days I wake up without the suit, I feel light, free and a floodlight has been flicked on in my brain. I can see and think clearly again. My energy is high, I run up the stairs without thinking about it, my conversational skills are on point, and I feel I could run the world. I feel ‘normal’, but it doesn't feel normal any more, it feels exceptional, and I question if the bad days are really that bad anyway and next time I'll just 'get over it and push through'.

So what’s the answer? Ultimately - I want a complete mascot-ectomy!

I joke, but I also do want to remove the source of it all and I’ve reached the word ‘Hysterectomy’ in my medical chats, and I'm viewing it as a removal of the hysteria.

I question some days, what stops me waddling my giant suit over the edge of a cliff? (Aside from the fact it would probably just cushion my fall!)

I've worked out it’s faith and fight. I’m a Christian and that means Jesus, and He means hope. Not something to believe in outside of my suit, but a present person inside the suit with me that knows exactly how I feel. He joins me in the confusion, whispering ‘This is not the end, this is not who you are,' day after day, fter day with small reminders around me.

And fight. The strongest defence is to outnumber your enemy. It doesn't have to be an army but I needed at least one person at to understand what I'm going through and stand with me. The obvious tricky point is that I don't fully understand it myself! So I needed to find a way to communicate what I'm fighting. My husband and I are best friends and as I try to unpick it and explain it to him, I know he understands and knows me well enough to know this is real, even if he can't see it, he believes in the suit (even though reading this will be the first time he's come across the suit analogy!). He has been willing to reach out, take my big soft suit paw and understand. In return I've learnt to express my feelings. Just being able to say 'I'm so antsy' or 'I'M SO ANGRY' is enough for him to understand I won't be chatting much today, I need to distract myself because life inside is confusing me a lot. It takes time, patience, tears and frustration, but we are finding ways to communicate. And I've learnt, when I can't trust my brain to know what's happening or my thoughts to be real, I can be silent, snuggle up to him even if I don't feel like it, and know it will pass… eventually. Starting the arguments, that my brain is goading me into, aren't helpful and the old adage - 'If you can't say anything nice, don't say anything at all' has become invaluable to me, and a coping strategy.

******

So, that was just before my hysterectomy which removed my hormone fluctuations and lead me to believe I was on the way to recovering slowly with the help of HRT. That journey hasn’t been smooth either and to this day I’m still fighting days with the suit, but it’s definitely a slightly thinner suit and for less prolonged periods of time. I suspect it will be with me for life, in one way or another.

For those of you sat in your big invisible suits now, here’s a few words of advice to help you through:

1. Don’t checkout of life. You keep one padded, fluffy foot in the world and keep moving whenever and however you can. And if you need help, seek it, it's out there, but it won't come to you.

2. If it's right, continue to work, even if part-time, volunteer if needed, don't lose all sense of achievement and self-worth by staying inside four walls. You need the perspective of the outside world, of what you were, of what you are, and of what you will be again one day. But tell people about it, so they know what to expect, it’s hard on you but it can also be very damaging to those around you if you don’t give them a heads up.

3. Remember there are people worse off than you (if you live in the west this is true for everyone), so don’t stop helping others where you can, even if it's small and takes sacrifice, if all you can manage is to message someone to check in on them from the sofa, do it. You can’t underestimate the power of feeling useful by just checking in on other people. It also helps your focus not entirely go inwards. And find stories of people who have triumphed over their similar situations, to help you cling to the hope that you too will see a better day.

4. Keep going, tell people it’s hard rather than calling in sick and quitting, keep the house clean, nap if you need to, hold onto purpose even if it's just with a fingernail.

5. Give yourself a break, if there's a medical reason why your brain isn't functioning right (including grief and loss), then adjust your life accordingly.

6. Don't let it wreck your relationships - because it will if you don't prevent it. People won't understand, that's not their fault, they haven't experienced it, and they might think less of you or wish you were different, but don't blow up the relationship, just keep the minimum going to maintain them. Don't let it rob you of the life you can have with people that understand and see you trying to be part of the world.

7. Don't give up on the doctors, find one that will hear you and keep talking. I have a spreadsheet mapping my symptoms every day for six years to find a cause, if you don’t take it seriously, why should they?

8. Don't lose your sense of humour - if it's funny, laugh, let people make you laugh, find things that make you laugh, watch things that make you laugh. My husband making me laugh were some of the most precious moments in my days.
   

There is life on the other side of these days - hence The Silent Why podcast, filled with people to help you (and me) learn and see that. I knew if I was suffering with this, which not many other people understood, then there would be loads of others going through things and griefs that people don’t understand. So I wanted to speak to them and share those conversations with you. And because I’m a strong believer in hope, we ask all our guests - 'What's your Herman?' (see link to understand that better).

So yes, this is a loss. A big one. But for many, not permanent, because every now and then you get 'you' back, and you can see the bad days for what they are.

So just remember; you can do this, it’s just a little harder than it was before.

I have three words on my phone lockscreen, by C.S. Lewis, from The Voyage of the Dawn Treader, and they remind me to stay strong:

Courage, dear heart.

(Who knows, maybe C.S. Lewis wrote those words too 😃)