So I've written in the past about mental health issues, and couldn't help but do a quick post to highlight an absolutely bloody brilliant blogpost about depression from Ali Brosh.
Ali has always communicated stories and experiences via these fun and quirky illustrations, and hadn't posted in a long time after a previous post in depression.
Her return post highlights her experience with depression in a way that makes it very clear just how real and terrifying an experience this can be - while also being an easy and actually enjoyable read, sitting in her usual trademark style.
If you want a glimpse into the world of mental illness, because you want to understand it - read this post. If you have experience of depression, read this post because it will ring true and make you feel less alone. Basically - read this post.
I also wrote a blogpost at the beginning of last year about my own experiences with depression and anxiety. No fun illustrations I'm afraid, but an honest account of the day to day life with the illness which I suffered with a few years ago.
Having had a pretty dire chronic illness for a few years now, I can honestly say I would choose that over depression any day. Your mind is what keeps you going and when that shuts down it's a horrible and seemingly hopeless existence.
Frustratingly people often don't see that - hence the ongoing stigma around mental health. It's getting better but there's still a way to go.
So if you're still not quite sure you understand the whole mental illness thing, do some reading of one of these suggestions. It won't take long and you will leave with a lot more understanding, and hopefully also respect, for those that battle mental illness.
So the above video was on Britain's Got Talent - 14 year old Jack Carroll's 2 minute stand-up comedy audition. Comedians often struggle on these shows: to win over a crowd within this short timescale, or rather - to avoid being buzzed off by the judges within 10 seconds, is difficult. Jack did it though.
Jack has cerebral palsy. His humour was self deprecating and his routine largely about his condition. Rather than being awkward, as some might expect, he broke the ice and had everyone laughing instantly. His jokes were genuinely funny but also it was lovely to see him finding humour amidst the pain.
Jack's routine also tackled some taboos around illness - ie that we don't talk about them for fear of saying the "wrong" thing, and we certainly don't joke about them.
I constantly joke about my condition, which means that people around me feel they can too - which is good. To me, it really is a way of alleviating awkwardness but also breaking the ice, so people tend to feel more free to ask questions - which can only be a good thing.
It also helps me get through it all - to find the humour in this ridiculous situation, to keep smiling and laughing.
Within the first few months of passing out a lot and being in and out of a'n'e, I went to see a tutor about some work I needed to catch up on - and answered her question about how I was doing. I answered honestly, but slipped in an off-hand joke, as I guess I tend to do.
Her reaction surprised me. She told me the situation wasn't funny, she didn't find it funny and was really worried about me. It was odd. Usually we'd get on well - she understood and engaged with my sense of humour, but not today. She pushed her point until I was in tears.
For an intelligent woman, I couldn't understand how she didn't see this was a coping mechanism. She said I had to talk seriously about it, to get the information across. The thing is, I'd slipped in one joke, and she shut me down. If she'd let me, I would have carried on telling her how it was. Instead, I was in tears - which was tiring and unnecessary. Yes, she cared and was concerned - but attacking me about my way of coping and communicating through my illness was not helpful.
Also, tears at that moment should not have been a crucial indicator of me understanding the seriousness of my situation. If I never got upset or talked about things seriously, that'd be worrying - but I did. I talked about it with my mum and my close friends, in the comfort of my own home.
I cried a lot too - countless times after coming out of hospital, whether another long visit to a'n'e or a hopeless outpatients appointment. However, if I cried, or even suddenly became very serious, every time I talked about my situation - I would have been a wreck. What got me through that time, and still does, is maintaining my sense of humour.
Yes, humour is a coping mechanism, but it's also part of my personality. If I shut that down, no doubt I would have shut down too. Staying strong mentally was completely necessary - both for getting through my final year of university and doing the best I could, but also to keep positive rather than letting it get me down.
It runs in the family. My Grandad has the most brilliant sense of humour. He went to a doctor's appointment, and was asked to take a seat - so he picked up the chair and asked where he wanted it. He knew what he wasn't doing - he hasn't lost his marbles. He simply saw the opportunity for a joke and he took it.
Equally when he went to plan and pay for his funeral in advance, he found the humour in the darkness and was cracking jokes. Still, he got home and had a little cry. Difficult situations are made easier through finding the humour - it doesn't mean the individual doesn't understand or truly feel the effects of the situation.
That tutor also told me that my sense of humour meant I wouldn't be taken seriously in my chosen career path. I was in my final year of university, working so hard to keep up with work despite passing out everyday - and suddenly it was a personality trait that was going to hold me back?
This really frustrated me. I'm a strong believer in not suppressing who you are or where you're from. Turns out at the interview for my current job, I did feel comfortable enough to make jokes with the panel. They didn't chuck me out for not being serious enough - they hired me.
Anyway I guess the question arises, if someone makes jokes about their own condition - does that mean you can too? I think it's a case of gaging the individual's attitude and humour and responding in relation to that. I'm open about my condition and make jokes - so others can too. If someone didn't talk about, let alone joke about something, probably best not.
Thinking back on Jack's audition - while the majority of his material was about his disability, it somehow also had the effect of making you forget about his condition.
When you imagine a disabled person, perhaps a certain image is conjured in your mind, and maybe that is accompanied by a feeling of sympathy, pity or perhaps admiration because they are brave. That tends to be the last thing someone like Jack would want. Yes, it's a horrible thing to live with - but what defines Jack, rather than his condition, is his incredible sense of humour.
So if you ever hear a joke in this context and it makes you feel uncomfortable, think about it this way: they are choosing humour over sadness, and potentially thinking of you - to make you feel better about the situation. They are also choosing to not be defined by their disability, and your ceasing up or criticising is counteracting that.
Ultimately, let's all just have a laugh. Oh and vote for Jack on Britain's Got Talent when the time comes, because he's a bloody brilliant comedian.
So by this point I've had a lot of different medical tests. Since all that fainting and stuff started going down I've had all sorts of wires and monitors on for various reasons. Each time I got a letter come through about a new test I'd be curious as to what this one would involve and so I thought I'd do a little post about the tests I've had to hopefully alleviate any anxieties if you're going through something similar, or at least share in similar frustrations.
Please note that your experience of these tests will inevitably vary - based on hospital or different kinds of the same test. Also everyone will have a different reaction to, and experience of, these tests, which I guess is the point. So basically, this is just how it's been for me.
Blood test
Pretty basic one but freaks a lot of people out. It really is very quick and is done before you know it so just take deep breaths and squeeze a loved one's hand if need be. I used to have to sing the chorus to Defying Gravity in my head to distract myself (stagey, yes, but also a little ironic..) then I got to the point I was in hospital so much, they'd stick a needle in my arm and I'd barely notice. You get used to things I guess.
Urine test
I always felt a little embarassed handing over a pot of my pee to a nurse to take away to test so I really wasn't a fan of the 24 hour urine collection. This was before I started fainting and I just had tachycardia (fast heart rate) and weakness. You can't really go anywhere on the day you have this unless you fancy carrying around a bag'o'wee. Well, it's more like a plastic container - but you get my drift.
Blood pressure
Again pretty basic one but thought would include. The cuff goes round your arm, tightens for about 20 seconds and then releases. Ta da. It's worth getting a monitor to have at home so you can keep track of your own blood pressure and heart rate.
ECG
A typical 12 lead ECG is where you lie on a bed with your top off and have 12 leads stuck to your skin with little sticky electrodes. You don't feel anything when the reading is being done so this is completely painless and not uncomfortable at all apart from a little embarrassment at lying there topless, which you soon get over.
You can also have these on for 24 hours or a week, but this is only three leads so much easier to handle going about your day. The monitor can be attached to your belt or trousers, or can sit in a pocket of a jacket. Means you can't wear a dress so easily but a good trick is to wear shorts under a dress then you can keep the monitor in the pocket.
Also if you are having a 24 hour ECG done, don't stay home out of embarrassment - the point is to go about your day as normal to see how your heart is working. I found a pashmina or scarf also comes in handy if you feel a bit awkward about people seeing the wires - which I did when I had a 7 day ECG on three separate occasions (not fun).
The hospital should give you plenty of spare electrodes and explain where these go. So you can still have showers, you just can't leave the monitor off for two long. You also need to write down if you have any symptoms, when you sleep and if you have a big meal.
Tilt Test
This is the one that sounds the scariest written down but isn't too bad really. You lie down on a padded table type thing with your legs strapped down and a bar in front to keep you safe. There is a panel for you to put your feet on at the bottom. An ECG is going as is a blood pressure cuff on one finger. After so many minutes of lying flat the table is tilted and rotated until it is in a near upright position. If you feel symptomatic you can let them know - there were two nurses in the room when I had mine.
The only thing I didn't like was that I got bored standing doing nothing for 20 minutes, but then I lost consciousness. As soon as you are symptomatic or do actually pass out they will bring the table back down to a horizontal level and make sure you are okay. They then keep monitoring you until you are back to normal and can leave - even then I waited in the waiting room for a while so could get someone's help if necessary.
It's a good idea to take someone with you to this one. They won't be able to be in the room while test is happening - but can make sure you get home ok afterwards if the test does induce an episode.
I've heard if you don't pass out they can give you some medication so you will pass out and be monitored but I didn't need this when I had the test so can't really comment.
Autonomic Nerve Test
Felt a little bit like I was on The Cube or something with this one. It's several little tasks you do while also having ECG and blood pressure cuff on finger going. I think the tasks were: squeezing a blood pressure cuff and keeping it at a certain level for two minutes, blowing into a tube at a certain pressure for so many seconds, standing up etc. I can't remember all of them but they give you a break in between each one and it was quite funny really.
EEG
This one monitors brain activity with about twenty small leads attached to your scalp with tiny electrodes, using sticky stuff to get them in place. Immediate side note: bring a hat if you're planning on going out afterwards because as much as they try to get it out of your hair, it does leave your hair looking and feeling pretty greasy.
The actual test involves sitting in the dark with your eyes closed then open for periods of time. Then a bright light will be shined at various intensities and for various amounts of time including flashing - I found this a bit uncomfortable but it doesn't last long and there are breaks between the lights. You also take deep breaths while having the wires on.
Lasted about twenty minutes to half an hour altogether. The lady who did mine was lovely and really encouraging - which helps with the uncertainty of it all, and wanting the test to be over as it's boring/a bit weird.
CT scan
This was so quick it was ridiculous. Literally went in, lay straight on the table which then moved back into the tunnel (see image at the top of this post) and within a minute I was done. You don't feel anything when the images are being taken and you only go a very small way into the monitor so don't worry about feeling claustrophobic. There are some sounds while the images are taken but this is not very loud.
Echocardiogram
This is a sonograph of the heart so a cold jelly is applied to the chest (another topless one but you get to wear hospital gown) and this area is then scanned. A little pressure is applied but not in a way that is uncomfortable or painful. A 3D echo does not feel any different - just another image that they take. I'd guess the test took about 15 minutes.
It was a bit weird as it does sound like how a pregnancy scan would sound and my mum was actually able to sit and look at my heart!
Exercise Tolerance Test
So this was my least favourite and I felt like a mix between Bridget Jones and Lady Gaga. A couple of ECG leads are applied and blood pressure is taken regularly throughout the test - a face mask is also worn to monitor breathing. This first one was on an exercise bike and started at a gentle pace and built up until the maximum of what I could do. Two nurses were with me the whole time and were very supportive and reactive so if you do feel unwell you are in the safest place possible. The difficulty with this one is that my pre-syncope warning is so split-second that I'm never able to warn people, so I did pass out and come off the bike but the nurses made sure I was safe and didn't injure myself.
I had another exercise tolerance test on a treadmill. The idea was to have an echo before and then after exercising when heart at it's highest. Again, ECG wires and blood pressure regularly taken but no face mask this time. Similar idea - starting gentle and increasing in speed/steepness every 3 minutes. As I could have predicted, I lost consciousness but the two nurses made sure I was ok.
Because I think the phrase 'bucket list' is ugly, here, in no particular order, is my life to-do list:
Get a book published. Direct a full length play/performance. Have children. Learn to meditate. Find love. Go on a gondola in Venice. Ride in a helicopter over the grand canyon. Go to Dollywood. Have an apple tree in the back garden of my house. Learn to drive. Hug a koala bear. See Shirley Bassey perform live. Go to Beijing. Learn/relearn to speak French to point of relative fluency. Sing live in front of people, on my own. Go paragliding. Perform in New York. Ride a hot air balloon, preferably in Cappadocia, Turkey. Live in New York for a few months. Write an actual full length piece of fiction (this one is particularly scary). Have a hot stone massage. See the Northern Lights. Celebrate New Year's Eve in Sydney. Spend Christmas at Disneyworld. Raise as much awareness for POTS (Postural Orthostatic Tachycardia Syndrome) as possible.
One of the questions that came up during Forced Entertianment's Quizoola (see here) was "when did you last pray?"
As with the inevitable nature of the performance, I answered in my head. Then I wondered about other people's answers.
It's an interesting one. A lot of people don't pray. A lot of people pretend they don't pray.
A lot of people think they're above it. That they're silly. Talking into the silence, to some big man in the sky - as if he can help. As if he's listening.
Except when things get tough it's not silly. You're not even thinking about how silly it all is. I like that sentiment in Regina Spektor's Laughing With. You can be chuckling over God at a party with airs of superiority and cynicism, but when everything comes crashing down you suddenly find yourself praying.
I used to be a Christian when I was a child, and then I grew up. I grew cynical and it all just seemed too implausible. I still went to church every Christmas Eve - my Mum loved it. It was her favourite part of Christmas but also I liked it. It was calm. It was lovely.
Still I said I was an atheist and I guess I was. I wished I could believe in something - something to give me hope and make things a little easier but I'd lost faith and I couldn't get it back.
I wouldn't judge those who did believe though. It seems like the most ludicrous use of energy to criticise or to pull cruel humour from other's beliefs just because you don't share them. If it gives them hope that's wonderful - why does it affect you?
Then as I got older I read Feel the Fear and Do It Anyway by Susan Jeffers and other books like that. A part of me was held back. It sounded so American and cheesy - but the books helped. They gave an immediate sense of calm but also they helped me to deal with life. They helped me learn that life is more about how you respond to things rather than what actually happens. When I got ill that helped but also it made me calmer in general. I wasn't so anxious anymore, just happier and more myself - which sounds odd, and it wasn't immediate, but that's how it was.
Through that I came to believe in something. I don't know what. Me and my friend used to joke about thanking the universe. We weren't thanking God but we counted our blessings and we felt gratitude to something - whatever it was. Maybe just in general.
I don't know if I'd say I was an atheist now, but equally I'm not quite sure about saying I'm agnostic. That I'm sitting on the fence. That I just don't know. I guess none of us really know but I find the phrasing uncomfortable. It's more than that but at the same time not that.
Yet I pray. I prayed last week when I was lying in bed unable to sleep because my legs were in such excruciating pain. I prayed for the pain to stop. Before that I prayed when I went to see Helva. She was my Grandad's wife, not a biological grandmother and I never called her nan, but that's what she was. I saw her in the funeral parlour. I said goodbye and that I loved her over and over again. Through the tears I found myself asking God to look after her and keep her safe. I didn't know that's what I believed. I prayed last summer when I was so physically weak but mentally strong - praying I would be well enough to work again because I'd landed a job I really wanted yet was so unwell it didn't seem plausible.
I find myself praying when I'm desperate and when I need strength. Maybe that feels a bit wrong in retrospect, to pray just when I really need something. Though I do count my blessings and am so thankful - I just never articulate it in that way.
I don't think I could ever pin how I feel about all of this down to one word. To say I am this. That'd be nice in a way. I'm a bit envious of the community it brings people - a sense of belonging, but then there's elements I'm dubious of. It would just seem fraudulent and forced.
I think that's ok though: to not really know and not be able to articulate it, but to take some solace from prayer or from gratitude. It's not all about categorising what something is, sometimes it's about taking it for what it is - whatever that may be.
So I stumbled across this little gem of an article which lists 50 ways you can help someone with a chronic illness, and it got me thinking about the idea of asking for and accepting help, but also the other side of this: the process of offering or giving help.
I suppose people sometimes find it awkward to offer help - that it might seem patronising, or maybe they don't know how to help. If you offer an open-ended "let me know if you need anything" that's lovely and appreciated, but it's still hard to ask for things.
That was something I had to learn and get over when I was really sick with POTS. I was passing out all the time and very weak: I needed help. It got to the point where I'd be asking someone to walk me to the bathroom during a rehearsal. Not a fun thing to do but it was necessary - and people really don't mind.
There's also a difference between asking and telling: asking if I need something rather than telling me I need something, or asking me how I feel rather than telling me how I feel.
When I was really unwell some people felt the need to insist I sat down whenever I was up and about. I guess they were worried but it was embarrassing and annoying. It was also an unfounded instinct rather than them knowing me and gaging how I was, ie clocking me going pale or my eyes going a little glazed.
So the loveliest/most helpful things people have done for me include: driving/coming with me to hospital appointments (not just family but also an old manager I wasn't even that close to did this - so appreciated), offering lifts, offering to pick things up when going to the supermarket, picking up medication, offering to carry heavy items, offering to bring food round when I've been really unwell, making me tea etc.
So lots of practical things really. I haven't always taken people up on their offers but it's always made me feel so grateful. It's horrible feeling so unwell, and realising people care about you enough to offer to do these things does bring some much needed happiness in these difficult moments.
It's also things like texting and asking how I'm doing. When I'm off sick from work I tend to be frustrated that I'm at home. Aside from the whole feeling awful thing, I'd also much rather be at work than in bed watching telly. Doing that on a weekend is lovely and a nice way to unwind but when it's because I'm unwell it's just annoying. So having someone check in, and make me smile, is nice.
It's also people asking questions that I like. You might worry about prying or it being annoying, but I like it. I want people to understand this condition as there's so little awareness. It also shows they want to understand which is nice. I'd much rather that than people making assumptions about why I have this condition, or what it's like to live with.
So if you know someone with a chronic illness read that article I linked to. Don't be scared to offer help. Equally don't be offended or put off if your offer is turned down - it's likely to still be really appreciated. The offer also makes it easier to ask for help in the future.
I hope no one reads this and feels a pang of guilt - wondering if they should do more, or do things differently. That's not the point. It's more to alleviate any anxieties around this potentially awkward issue.
So thank you to everyone in my life that is so wonderful, and to the people that also have some ridiculous health condition - you're not alone, and it's ok to need help. It doesn't make you weaker, it's just a necessary part of getting by and staying strong. So say yes when you know you need to, and ask for something when you know it's necessary. It gets easier.
Girls is a show that I was sucked into from the first episode - which is a rare treat. I was in awe of Lena's writing, directing and performing and a little bit/a lot in love with Jessa. It was a fun and easy half-hour watch that made me laugh and kept me entertained. When I hit episode 8 of Season 2, thinks took an interesting and more serious turn in that Hannah's Obsessive Compulsive Disorder was suddenly introduced.
After finishing watching Season 2, I was curious to see what people made of this storyline and the representation of OCD. So I did a little Twitter search and sure enough reams of tweets came up. I wasn't too surprised to see that the tweets largely consisted of people's confusion and frustration at this sudden appearance of Hannah's OCD. Devout fans were critical of the direction the episode took, and quite taken aback by it.
Admittedly when episode 8 started and Hannah was doing her head turns and counting it seemed out of place: too new to make sense. I think people thought that if she had OCD, why not from the beginning? Why now?
The thing is though, surely something like this could be easily experienced as a teenager, go away and then come back at times of stress - ie the pressure of having to suddenly write an actual book after being a casual essay writer.
This made sense to me. Some people experience different mental health problems that pass and then recur, whether that's depression, an eating disorder or OCD - and once it's back, it's well and truly back. Perhaps we could have seen some glimpses of the condition, that we would look back on and think - that makes sense in retrospect.
While people may have wanted a drip-feed of clues for this to be a plausible narrative arc, life isn't always like that. People don't experience mental health conditions in one way. Equally people find out about their loved one's mental health conditions in different ways. You could always know someone has this condition, or it could be a sudden revelation, either through words or behaviours, that's difficult to process.
When people have no idea someone suffers with a condition such as this, people are often really taken aback - thinking they had no idea, she always seemed fine etc. When actually the condition may have gone away, been well hidden or well managed and it's only at the point that the person is back to really struggling that the condition becomes so physically evident - as we saw in episode 8.
Lena Dunham talks about having struggled with this herself and so to me arguing about how realistic the portrayal of the condition is seems odd. I love that she is tackling the stigma and misunderstanding around the condition here. Like she says, the people that talk about being excessively clean do not necessarily have OCD. Her portrayal shows just how debilitating the condition can be - whether having to stay up until 3am to complete rituals, feeling social anxiety as others pick up on behaviours or not being able to complete work or even leave the house as the condition is compounded by stress in a vicious cycle.
So kudos to Lena to bringing the reality of this often misunderstood condition to light, and also for getting people talking - that can only be a good thing.
Write this blog as a way to reflect on personal experience, often on either performance or positivity in some way, as well as reviewing theatre whenever I can!
Questions or queries can be emailed to amyjanesmith[at]live.co.uk
