Sunday, 29 November 2015

Chronic illness, relapses & what I've learned

They said this could happen. That I could get better, and be doing really well, I could recover, and then I could relapse - randomly, for no reason at all.

I only really heard the part about getting better - I had to cling onto that, I couldn't look further, especially when I struggled to believe it could be a possibility at all.

But it was: I did get better. I'd have random bad days or episodes in the heat, but I wasn't too shaken by that. And then it happened: a real relapse.

A quick bit of back story: I have a chronic illness called POTS (Postural Orthostatic Tachycardia Syndrome) - the main symptoms of which, for me, have been passing out, a fast heart rate, fatigue, and pain. At my worst (2011-12) I was passing out everyday, if not a few times a day - everything was a struggle and I lost my independence. I slowly got better, staying upright more but still plagued by the other symptoms.

Then, in March 2014 I was prescribed a medication that was new to POTS patients - Ivabradine. Slowly but surely I improved until the point where I no longer felt like I had POTS. I wasn't conscious of my own heartbeat, at all. I'd have a few bad days here and there but mostly I was fine - I was great even.

And then at the beginning of last month I felt that frustratingly familiar feeling of fatigue. I thought it'd go after a few days but it stayed. If you haven't experienced fatigue, it's not just being tired - it's the kind of worn out you feel with a bad virus or flu - you feel heavy and exhausted, and there's no real way to alleviate it. I find it one of the hardest things to work through, much more than pain.

I spoke to my nurse, increased my meds and took it easy. I seemed to be improving. Then last week on Tuesday the fatigue was back, so I worked from home. I had a few moments of standing up and feeling the blackness coming. Then that evening I passed out. Only a quick one, but I really felt it. The next day I was exhausted, my heart was racing and my head was hurting, and I couldn't seem to stay hydrated no matter how much I drank.

I went back to work on the Thursday, worn out but ok - only to pass out again. This was worse. I had the annoying aftermath of feeling like the only drunk person in the room. I went home to sleep, but I was still feeling really rough and not right at all. I messaged my parents, and they brought me home. It was so nice to be back with them, to rest and be looked after.

I was physically the worst I'd been in years, feeling awful and nearly passing out everytime I stood despite upping my dose. Alongside all of that - for the first time in a long time - I felt afraid. Not of passing out itself but the idea of being back in that place. I had visions of not getting better, of having to leave London, leave work, leave behind the ability to go anywhere by myself.

It wasn't pessimism, it was a feeling of deja vu and genuine fear. When I first got ill, the physicality of it all was scary but it was new. This time I had the memory of how I used to be and the contrast of my life now - and the idea of losing that terrified me.

Anyway, again - I spoke to my nurse, increased my meds, went back on an old one, and also went back to old lifestyle changes like increasing salt intake, and slowly I started to feel better. On Wednesday I had my first day in over a week of standing up without feeling like I was going to pass out (that's the problem with POTS - the issue is being upright, which is quite a core part of any day). On Thursday I went back to work. I was tired but I was ok, it was good to be back.

On Friday, I walked home from work. I'd relied on taxis there and back, but I thought I could take it slow - I was worried about deconditioning and losing stamina. I managed the walk, and as a light rain came down, looking a little like snow in the street lights, I smiled. I felt myself getting emotional and stopped myself when self-awareness came in at the ridiculousness of the situation, but really, I was happy. I'd doubted I'd be walking anywhere anytime soon, and it felt strange, and long, but also - really lovely. Gratitude.

Sitting working from home the other day, I had a realisation. So much of my behaviour now I think stems from that first time of getting ill. When I couldn't go out, I would sit in bed and write. I'd blog, and I'd prepare notes for directing a play at uni, and I'd think things through.

Being ill made me determined. I had to finish my degree, and I had to find enjoyment and a sense of achievement from somewhere. I also couldn't bear the idea of being known purely as the girl who passed out.

Before that, I'd struggled with confidence and with procrastination. I'd have ideas but not start them let alone finish them. And I'm sure that part of that is growing up, but I also believe that my being ill has a lot to do with how I am now - with a strong sense of persistence and curiosity, in my personal and professional life.

I wouldn't say I'm thankful for being ill, it's been bloody awful and I could have done without it, but it has made me embrace both discipline and creativity in a way I'm not sure I would have otherwise.

When really ill, gratitude would be the last thing from my mind. I'd think screw that - this isn't fair and I don't want to be held back. But on getting better, I feel so, so thankful that I am, and what that means.

I realised with this relapse too that while I've gotten used to illness and symptoms, I still haven't got used to being off sick. I want to be working, mainly because I enjoy it but also I guess I care what other people think. I don't want people to have to make allowances - and yet they do. And they're all so lovely and understanding - but asking for and accepting help is hard, especially when it's been a while.

So maybe all these years on, I don't fully accept the whole illness thing. But that's hard when it's all so unpredictable - except of course for the predictability and inevitability of setbacks. You get a glimpse of the good life and you begin to hope it's all in your past, without even realising.

Anyway, fingers crossed, touch wood, pray if you believe in that sort of thing, that my crazy heart will keep calm and I will continue to stay upright. It definitely makes life a lot easier.

Read everything else I've written about POTS here.

Tuesday, 17 November 2015

Alcoholism: from anger to acceptance

This creative piece I've written got me thinking more about my changing relationship to, and acceptance of, alcoholism.

First I wanted to elaborate to say that I know my moving on and acceptance is made easier by my Dad doing really well. Through the help of a brilliant therapist, he's mostly sober, with rare relapses. So I know my situation is a good one (though it hasn't always been that way), that I'm lucky - and that enables a healthier perspective.

Still, I feel like maybe sharing some of my thoughts around all of this may be helpful. It may also be infuriating if you're in what feels like a hopeless situation - and if that's the case I'm sorry, and I understand. Please read anyhow, I really hope you can take something from this.

See I remember on one of the few times I went to a support group, feeling such frustration at this phrase being read out: "grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I remember thinking, how could you ever accept this? How could this ever be ok? And so desperately wishing that was an option for me, but almost knowing it wasn't.

I held a lot of anger, and a frustration that no matter how understanding or compassionate I was (and truthfully at that time I wasn't - I couldn't be), it wouldn't be enough to end the addiction. The situation felt hopeless, and that was so hard to deal with.

What was also difficult was the idea of control and choice. As much as I tried to understand - the idea that it was him but not him felt unfathomable at times. It felt like there were other ways - if he could just put the bottle back, or call us, but he couldn't. And that was hard.

Even when I got to a point of understanding that drinking was never a choice but a compulsion that was so strong it drove away logic, a relapse would always feel devastating. The anger would resurface - I think in retrospect partly because of fear, of going back to that situation of lies and uncertainty.

What I wrote about here was how our situation would repeat. For a while we were stuck in a cycle of drinking and lying about not drinking, and big tense conversations around that. What also repeated was my reaction - although I'd been there before, I never seemed to learn.

Having some space, literally through living away, but also the space afforded by sobriety as relapses got further and further apart, I was able to understand the situation a little more, and to feel more accepting of it.

Then, this year I got to know Brené Brown's work - through video interviews and her books, and honestly I think she helped. Her research and writing must have seeped in, or maybe a sense of bigger picture perspective amidst other situations too.

One time after a relapse I could tell Dad was struggling with shame. He hadn't wanted to drink, nor to make things harder for anyone, and yet he had - and he felt awful about that. Having expressed some frustration but also a level of acceptance, I then came back and tried to say - please don't let this fester and drag you down, it's happened, it's ok - we can move on.

It felt different. I didn't feel angry, I felt like I was standing in front of my Dad who I love and respect, not just wanting him to get back up again - but actually, maybe for the first time, offering him a hand to do so.

Then, when I read Brené's Daring Greatly recently, she hit the nail on the head of where my thinking had been getting to:

"We live in a world where people still subscribe to the belief that shame is a good tool for keeping people in line. Not only is this wrong, it's dangerous. Shame is highly correlated with addiction, violence, depression, eating disorders, and bullying. Researchers don't find shame correlated with positive outcomes at all - there are no data to support that shame is a helpful compass for good behaviour. In fact, shame is much more likely to be the cause of destructive or hurtful behaviours than it is to be the solution."

Ironically, this sent a pang of shame through me. I knew that all the while I'd questioned and blamed, I'd been confusing accountability with accusation. I think I thought that if we didn't react strongly enough, it would all just carry on - the gravity of the situation wouldn't be felt. And maybe that's true. But it still wasn't helping anyone.

Brené's differentiation between guilt and shame is helpful too. Guilt being "I did something bad". Shame being "I'm a bad person". Two very different things.

We shame ourselves and we shame other people (especially when we're feeling it ourselves), and the only way out of that is empathy.

Things got a lot easier when I learned to listen without judgement. I used to be frustrated when things would go quiet, no explanations or apologies, but I was hardly a receptive audience. Now, we have good, healthy conversations - and I am so glad of that.

This animation adapted from the writing of Johann Hari is also really interesting in terms of shifting perspective:

The line "we put people in a situation that makes them feel worse and then hate them for not recovering" I found really powerful. In the context of the video, this is talking about prison, but I think this applies to reactions to the addictive behaviour generally and relapses too.

If you essentially tell an addict off, it won't deter them - it will fuel their shame. It is hard, people should know when they've caused hurt, but I think there's a way to do it - or maybe we don't do it at all (hard when you're feeling the impact of it all, but maybe that's why it's important).

I'm still trying to navigate all this, but I do know (with an awareness that this is hard) that it's important that we try to understand, and that we feel better when we do.

Read the poem I wrote that inspired this article here. I also wrote this piece on myths and truths around alcoholism last year.

Click here for some really helpful information on alcoholism and alcohol abuse including signs and symptoms, effects of alcoholism, getting help, and advice for when a loved one has a drinking problem. Addaction also have brilliant services for those affected by addiction.


we used to go round in circles
in seething silences we awaited answers that would never soothe nor appease
but would let the hurt linger

or most often still - no answer at all

A sigh
and his head in his hands
world weary
and wary of tired excuses
and feeling under attack
all he knew was nothing at all

no reason or logic
no answers to whys and

could you have not just put the bottle back

he said it was not as simple as that

it took time to learn
to learn that it's him but it's not
that these circles don't help
that the whys and the weary eyes won't ever make it stop

so despite myself i said
it's ok
I'm still proud of you
And i was

there was sadness still that we'd be back here once more
but if his drinking was fuelled by shame
then something had to change

cause god knows he's trying

so he had to see
he could be more than this
that he is more than this

he's my dad
And he's a good man
And I'm proud

Sunday, 15 November 2015

Starting a new blog on social media

So this is just a quick one to flag up that I've started a new blog! Over on socialmediafyi I'll be posting every Sunday with links to news on updates on the various platforms, alongside examples of organisations that are doing it really well.

I was kind of nervous to start this - while social media marketing is something I care a lot about and have invested time and effort in, I'm not an expert. But it'll be something I know I'll enjoy doing and hopefully helpful for people like myself who work with social media, but not as their whole job - so don't necessarily have time to research updates within the working day.

So if you know someone who works in social media and you think they'd be interested, please do share.

Meanwhile I'll still be posting here - with articles about various things, but also potentially trying to share more creative work. That was something I really enjoyed about the DIYCreativeClub Challenge in September.

The beauty of blogging can be that things don't have to be polished or perfect (does anything?) - so I'm hoping this will be a safe place to experiment. That said, feedback is welcome (especially if you like what I'm doing - we all need a bit of validation! ha. But seriously.)

But yes, thank you, and take care x

Tuesday, 20 October 2015

Bryony Kimmings & Tim Grayburns' Fake It Til You Make It

Photo: Richard Davenport

Expectations can be dangerous. When everyone tells you something is wonderful and five stars and will hit you in the gut, that's a lot to live up to. I feel like when someone says I'll definitely cry, that means I definitely won't.

So no, Fake It 'Til You Make It was not what I was expecting. But I absolutely loved it, and yes - it lived up to the hype.

I thought, because I knew the subject matter would resonate and because of what I'd heard, that it would hit me hard and I'd be a mess at the end, but I wasn't. I felt emotion, but a different kind. A sort of overwhelming pride, always an odd word when you don't know the person, but definitely pride - for how Tim had worked with Bryony to put together this show, and to stand at the end and talk to us about men and depression and stigma. I felt moved but more so in a joyous way - because we are most definitely making positive steps away from shame and into understanding.

If you haven't heard about the show: Bryony and Tim are a real life couple. They're in love, and are about to have a baby. And Tim suffers with depression and anxiety.

He kept it secret for the longest time, feeling too ashamed to even Google his symptoms, and it was only when Bryony discovered the Citalopram in his bag that he could begin to have an honest conversation about his feelings.

What I loved about this show, was the honesty involved, and the relationship we got to get a glimpse into. One-person autobiographical shows are common, but this dynamic is different - they're letting us into their intimate, personal and, crucially, shared painful experience, as well as the eccentricities and joy of their relationship.

And it was funny! I've said it before but I love the quote from Peter Ustinov - "comedy is simply a funny way of being serious." Serious subject matters do not mean we shouldn't be laughing - if anything, the opposite. It helps.

Fake It flits between storytelling, surreal visual antics that almost parody contemporary performance, in an enjoyable knowing way, and recordings of a real life conversation the couple had in their flat about their experiences with Tim's illness. This is where the emotion came from for me, hearing Tim talk about what he'd imagined doing to himself, and Bryony desperately wondering "what would I do if I found you there" felt deeply difficult to listen to.

Visuals are how I remember my depression and so the medium of this kind of performance feels absolutely perfect. It's such an odd experience to look back on - this scary blur of time, with unsettling images mixed in: genuinely bizarre symptoms and sleep paralysis and feeling lost, and spaces feeling surreal. They captured this so well - throughout, but particularly in the scene where Tim is anxious and, quite literally, lost. It genuinely made me nervous to watch.

Tim wears a variety of head-based paraphernalia (a cloud, dark sunglasses, a nag's head) to avoid ever having to make eye contact with the audience - but it's also the perfect image. Feeling separate and detached and wanting to hide but feeling ever so noticeable, even when you don't want to be.

The word brave around sharing mental health issues bugs me sometimes - I suppose it's the idea that sharing is inherently brave, rather than a normal conversation. It makes me nervous when I've forgot to be, or chosen not to be. We don't always want to be brave.

But here, brave is the perfect word. To talk about suicide and still feeling afraid, after being silent for so long: that's most definitely brave. And also to be an advertising executive, with no previous performance experience, dancing on stage in your pants: that's brave!

This show is important, really important, but equally don't be put off by that word - it's an awful lot of fun, and a lovely, joyous thing to watch.

Fake It 'Til You Make It goes on tour in the spring.

Monday, 19 October 2015

Why everyone should read Brené Brown's Rising Strong

"When we are brave enough, often enough, we will fall; this is the physics of vulnerability."

A few years ago now I fell in love with Brené Brown's TED talks on vulnerability, shame and empathy. She was a brilliant speaker and made so much sense. Why I then didn't investigate her work further I have no idea.

Because I've just finished reading her latest book Rising Strong and I'm kind of overwhelmed, in the best way possible.

I went through a stage of reading self-help books (this feels more research and story based, but yes most likely it may help you - and will appeal if you're into all that, but also if not) and Susan Jeffers' Feel The Fear And Do It Anyway was such a game changer for me. It genuinely helped me go from a place of low self-esteem and anxiety, to being able to cope with what life would throw at me.

Then I read some similar books that all explained the same things in the same way.

And then, many years later - this.

Again: game changer.

I think I underlined something on every page because it all just made so much sense - either in a completely new way, or something clicking into place. But I'm already finding myself clocking difficult feelings, and getting curious, and wanting to challenge people when I'm in a good place, in a healthy way.

I could so easily share so much of the book here but that would be a bit of a copyright issue and also - just go read the book. I'm sure I'll end up getting copies for most people I know. It just feels really reassuring to make sense of things and to have a way through, and to be braver because of that.

It's genuinely practical, and the way Brené writes is more accessible than anything I've read of this kind: she's funny, and she's honest, and she's just real. She tells a good story and she doesn't have this stuff down - she's working on it. And that's reassuring too.

I'm now going to work through Brené's other books - Daring Greatly and The Gifts of Imperfection. And then I'll probably read Rising Strong again BECAUSE IT'S THAT BLOODY GOOD.

I also feel so much gratitude for this and Elizabeth Gilbert's Big Magic (thoughts here) coming out at the same time, giving me a massive inspiration and reassurance boost right when I needed it. Ladies: you're wonderful - thank you.

If you don't think you'll have time to read this (please make time it's wonderful) - or even if you do - this interview explores a lot of the key ideas and is a really nice watch:

Sunday, 18 October 2015

There's no poetry in depression

There's no poetry in depression
No rhythms or rhymes in this place that's just
Not quite linear - nothing makes sense
but not poetic, no

There's repetitions
I learn what time the street lights switch off when I can't sleep
Not time by number but time by, I think that light's about to -
And there it goes
And the news on the radio every hour on the hour
how has an hour passed since the last hour
I just don't know

And repetition in a day spent the same way, only getting up to eat, not quite in sleep but just
For time to pass.
Then quickly.

We think there's poetry in it
In looking into the darkness
We like to say that it's being lost
and not waving but drowning

and I suppose there's poetry in everything
But this is mostly grey and always grim

Yes there's light, and there's images
But that's moreso the memories than the melancholia itself

I guess what I'm saying is it's a place dark and deep
but a place you'd never want to be
and a place not conducive to creativity
so no - to say they're linked so clearly doesn't sit well with me

Cling onto your hope and cling onto your art, to move you through
Because this isn't a place for you to stay

There's no poetry in depression

So, have hope, my dear

If this resonated with you at all, firstly - click that last link in the piece (that's the important bit.) Then have a little read of how I got through depression, and what the day to day experience of it was like for me.