I’m pretty much fine now.

Which is why it has taken me SUCH a long time to write this blog post.

The brain bleed itself was ‘sexy’ – it was high action, with vomit, skull drilling, gnome parties and lots of humiliation.

Being fine is less of a ‘page turner. No great story is written about someone who is just ‘fine’.

Back in June 2017 though, when I got dizzy if I stood up for longer than a few minutes and I felt really miserable and was scared that no-one would ever employ me again, back then, I would have been sooooo relieved to know that in a couple of years, I would be ‘fine’.

And then here I am. Absolutely fine.

 

 

Once I’d discovered the online brain haemorrhage community (and they have online communities for EVERYTHING these days – it is SO EXCITING!!!) I posted in all the groups saying I was looking to talk to other people who had had the same type of brain haemorrhage to me.

I talked to a woman who had had a much more serious type than me, and another who had had a perimesencephalic bleed like me, but without hydrocephalus, so she’d only been in hospital a few days, and missed out on getting her skull drilled.

I only found one person who’d had pretty much the exact same haemorrhage as me. We had a lovely video chat (he was in the USA) and it was such a relief to talk to someone who ‘got it’. THAT is where the internet is just wonderful, and everything that it is meant to be. I still haven’t met anyone in real life who has also had a perimesencephalic brain haemorrhage.

Then I had a call with a lovely woman who shared her story with me as I walked round and round my local park. I was feeling pretty good at the time, almost back to my old self. She asked if I was sporty or physically fit, and I realised, THAT was the big difference now. I used to regularly do exercise videos, or go for runs, or big bike rides, and now I didn’t. The woman was a runner, and was telling me that 3 and a half years on, she was back running. As soon as I got off the call, I made the decision to get my fitness back.

Getting my fitness back took a little time but actually, it was fine. ‘Fine.’

My brother ‘tricked’ me into park run by not correcting me on the phone when I thought it was 3km rather than 5km. But I managed it and felt absolutely amazing. I kept up the running for a while, until my knee started playing up. But I won’t bore you with my ongoing dropped arches, tight hips, dodgy knee, somewhat frozen lower back, chronic pain issue. That isn’t your problem. And it doesn’t have anything to do with brain haemorrhage recovery. Let’s move on.

Around the time of my 2 year brain haemorrhage anniversary I challenged myself to cycle to Wetherby and back, and to Ilkley. Both journeys were just over 20 miles, which I managed ‘fine’.

I don’t massively push it with exercise nowadays, but I’m fit. I walk a lot, I cycle, I dance, I can run 5km in under 30 minutes. Well, I could if I didn’t have my ongoing dropped arches, tight hips, dodgy knee, somewhat frozen lower back chronic pain issue. But as I said, that isn’t your problem. And it doesn’t have anything to do with brain haemorrhage recovery. Let’s move on.

As for orgasms… I can do them. I’m still not as fearless as I was, but I’m getting there.

In other news, I don’t handle late nights very well (although sometimes I handle them fine), and I rarely drink, but I was heading that way anyway.  I probably would be just the same if I hadn’t had the haemorrhage. But then I’ll never know that for sure.

Sometimes, when I look for differences between me before and me now, I really feel like I’m clutching at straws!

I’m back fully functioning at work and have been since around 18 months to 2 years post brain haemorrhage. It’s a constant play with balance – getting enough sleep but still having fun, working and earning money, but enjoying leisure time too.

Balance balance balance.

But then that is self-employed life. Whether you’ve had a brain haemorrhage or not.

Occasionally I wonder if I have brain damage, like in an acting class when we went straight into a name-learning game and it STRESSED ME OUT!

I can learn names. I CAN! It just takes a little time and attention, and often asking people to repeat their name once or twice right at the start.  So, quick fire name learning games are not for me. That was one of the first times I thought, damn, I DO have brain damage. It wasn’t a nice realisation. And it didn’t help with calmly learning people’s names.

Most of the time, I prefer to think that I don’t have brain damage, but that in fact lots of people struggle to learn names. And lots of people forget words. And lots of people lose things. In fact, before my brain haemorrhage, I forgot my PIN number for two whole days. These things happen.

So at this level of memory trouble, it really is anyone’s guess whether it’s down to brain haemorrhage or just standard forgetfulness. And for my sanity, I prefer to put it down to forgetfulness. It makes me feel happier, and more hopeful.

IF there’s a memory brain issue, it’s in the VERY short term memory – the rest of my memory is fine; I can still learn lines for acting jobs, and I have many phone numbers stored in my head like the weirdo that I am.

The big thing that has changed since my brain haemorrhage is that I can spell haemorrhage.

Oh, and also, I’ve started writing more. First this blog, then some poems, then lots of writing on my massage page and even some writing for the stage. I always said that I loved writing, but I needed something to write about. My brain haemorrhage has been the perfect ‘food’ to get started.

Also, I’ve learnt, even more than before, to take care of myself. There’s no way I want to get burnt out again. Being burnt out was rubbish. So I prioritise sleep, I eat well, I get alone time and friend time and I work enough, but not too much.

Ha ha. As if! That is the INTENTION anyway. It’s a good intention.

So there you are. it’s almost three years on and I’m back working my three careers, whilst toying with the idea of adding writing into the mix. I honestly am absolutely fine. And I can only say that it’s because I’ve been lucky, but hey, who knows, maybe I have a much more positive attitude than I realise, because check out this very low quality photo from the day I got out of hospital:

Hang on – I was JUST out of hospital. I’d been in there for 11 days and instead of going to rest, I walked round the park in my new slippers, and jumped on the exercise machines.

For someone who identifies as being somewhat pessimistic, I had hope. I wanted to get back to work and so I needed to get better and so I jumped on the exercise machines. I had hope that I could get better LOADS faster than the people in hospital had said. They had said it might take me a year before I could get back to work, but I was having none of that. Perhaps I’m not so pessimistic after all. Perhaps I could even go as far as saying I am an optimist.

And I did get back to work. Yeah yeah, maybe I went back too soon, but, well, whatever, it’s done now. And now I’m fine.

I know a lot of people aren’t able to go back to their same job – they have ongoing health issues or fatigue or memory or personality changes, and that’s a whole different thing to deal with. That is bigger and I don’t know how you guys do it. Much respect.

I can only talk about my experience.

My brain haemorrhage was the best type of brain haemorrhage to have (or, ‘the least bad’, as a friend of mine suggested referring to it). Sure, I was poorly and exhausted for about 18 months, but after around 2 years, I was pretty much ok again.

It’s been an adventure, and an important part of my recovery has been finding other survivors and being part of that community. I love it so much. That is why I wrote this blog.

The whole ‘brain haemorrhage’ thing – it was significant. Back in 2017 it was everything. But now, it’s something in my past. Now, I’m fine.

Weird, life, isn’t it?

Look, I’ll be the first person to hold my hands up and say it’s POSSIBLE I went back to work too soon.

Possible.

OK, fine. Possibly probable. That’s as far as I’ll go. And look, even if I DID go back too soon (which I only possibly probably did), it got me to where I am now (which is quite good, by the way). It just got me here via the scenic route.

I like the scenic route. What can I say?

Since 2015, when I came home from theatre school, I have been mainly self-employed. Which is GREAT. Every day is different, it is never boring, there is no boss standing over me watching every move.

But at the same time, there are no paid holidays.
There is no sick pay.
There is no work at ALL unless you find it yourself.

When you’re self-employed, especially when you’re building up your business, your time off work is spent looking for work. 

LOOKING FOR WORK IS STILL WORK! 

You just don’t get paid.

In my time off work I would be trawling job sites or promoting myself or training or doing a job for free or going to auditions or preparing for auditions, or doing one of my other jobs to pay the bills. I was desperately trying to find the NEXT job because I couldn’t relax if I didn’t know what the next job would be. Then the next job would come along and I would realise that my time off work was over, and it hadn’t even been time off anyway.

And each job would rarely be longer than 3 months, then it was back to the drawing board.

In the 2 years before my brain haemorrhage, I hadn’t taken more than 2 weeks off. There had only been one holiday.

In a way, I had forgotten how to relax. I was always ‘at work.’ THIS is the downside to being self-employed.

So after 7 more months of living like this PLUS being seriously fatigued because I had had a brain haemorrhage, it is no surprise that I got burnt out.

Burn out.

No fun. No games. No ‘joie de vivre’

I was low and exhausted and there was no running away from it any more. I made it official that I was burnt out. ie, I posted it on facebook:

15 June 2018 ·
Hello friends

Life has been non-stop for years. It is time. I am going to have July off work to refuel my energies. Does anyone know of somewhere beautiful I can house-sit or holiday (that isn’t Leeds), or anyone have any lovely rejuvenating plans or fun plans that might tempt me…?

Thank you x x x

Hang on, looking at it now, that isn’t particularly official at all – I didn’t even mention burnout, let alone my brain haemorrhage.

And the reason is that I didn’t want anyone on facebook (or even anyone in life) to know that I was struggling after the brain haemorrhage, in case it put off any potential employers or massage clients.

I was taking time off work, but look – I WAS STILL AT WORK! I was still thinking about possible future jobs.

Somebody stop me!!!

Of COURSE I was exhausted – fatigue after any brain injury is absolutely normal.

But the thing is, I was terrified of having the label of a brain injury. I was terrified of having a brain injury full stop. I didn’t want to have a brain injury. I didn’t want to even THINK I had a brain injury, and I DEFINITELY didn’t want other people to think I had a brain injury. I just wanted to be back to normal.

So I labelled the whole thing, for myself and anyone who asked, as burnout recovery. BURNOUT recovery. Not brain haemorrhage recovery. No no no.

I just wanted to have a normal burnout recovery, with no questions asked.

And in true self-employed style, I turned my burnout recovery into a job.

The job description was:
–  have FUN
–  replenish my energy.

It was a BIG DEAL, to choose not to work for a month. But by that stage, I really didn’t have a choice – I was a shell.

I was a shell of a person.

So burnout recovery began. And for the first time in a long time, I let go of the chase for work. I was out of work, but this time I wasn’t desperately looking for the next job; I was enjoying what I had.

Eckhart Tolle calls this ‘the power of now’.

Now I’m not going to claim to be anywhere NEAR Eckhart Tolle’s level of enlightenment, but for a few months, I did have the odd little moment of just experiencing and enjoying life as it was, in the now.

Instead of being labelled as an actor or a massage therapist – I was just me again, rediscovering life and the things I loved.

There I am, rediscovering life.

In the spirit of honesty, Nick Cave was before official burnout recovery started and I was still absolutely BROKEN. Yes I look very excited on the photo, but I’ve practised this happy photo face for years.

Actually, I tried to sell my Nick Cave ticket beforehand because I couldn’t face the idea of a day-long event in London, but when I looked into it, selling the ticket (which would have been relatively simple) started to feel like hard work.

That was how tired I was.

So I went.

I went, because I was too tired to think about making other plans.

It was in a dry, flat London park. The dust from London plane trees was on the air. We had to queue up and down lines of slow moving people to get in. There were thousands of people and they were all on their feet.

I felt dizzy if I stood up too long.

I sat or lay down while my friends went off for food or to watch Patti Smith. I spent the day wishing that I had found the energy to sell my ticket. I couldn’t understand how people ever met other people – talking to new people was far too exhausting. I leant back in to the tree and wished I was at home.

What a rubbish day!

And then Nick Cave came on, and all was forgiven. When I posted about it on facebook, all I mentioned was how amazing it was, not how rubbish I had felt for the majority of the day.

LIES LIES LIES

(Employ me! I have boundless energy….. zzzzzz)

Hey, at least I was making an effort to fill myself up with the good stuff. Nick Cave is the good stuff.

Burnout recovery was all about the good stuff.

During burnout recovery, I listened to podcasts and read articles about burnout. I had various therapies and treatments. I started reading and doing the book, The Artist’s Way.

I booked in fun activities like dancing and gigs and festivals and theatre. 

Sounds great so far, doesn’t it? Look, it WAS great. But travelling can be very tiring and I was already very tired. At one point, my brother did say to me: “There is such a thing as a staycation you know!” – yeah yeah stop being so right all the time.

Perhaps I did travel a little too much during burnout recovery. But also, it’s hard to relax at home – home is full of ‘things to do.’

So off I went – I went to Italy to hang out at my friend’s villa, I volunteered at a beautiful retreat centre in Scotland,

Something interesting I discovered was that I need a dark, quiet, calm place to sleep. I don’t know why this is suddenly a thing, but it is. Possibly because my nights in the hospital were in a bright ward that never slept and I really needed to sleep but I couldn’t.

I first noticed it when I was on tour in Italy and I had to sleep in a room with no door and no curtains. It was NOT happening, I just could not turn my brain off. I lasted one night.

It also came up when I was volunteering at the retreat centre during burnout recovery.

Here I was, on burnout recovery, where the aim was to have fun and to replenish my energy, and I found myself in a dorm room, with several other women. After 3 nights with hardly any sleep, I was a walking zombie. It wasn’t good. I cried in the kitchen as the drama queen that those of you who have seen me on the stage know and love. I told them I COULDN’T DO IT ANY MORE!!

Luckily, the gardener was passing through the kitchen and he took pity on my tears and showed me where I could set up a tent. The rest of my time volunteering there was ace (although, in all honesty, 6 hours volunteering a day was a little too much for my energy levels at the time). But I learnt something very important – whether it was from the brain haemorrhage or not, communal sleeping is not for me.

I also learnt that if you are very tired, perhaps don’t go on a holiday to Sicily during August because it is very very hot and you will have no energy for anything, other than swimming in the pool or reading or dozing and then when you get an ear infection, the pool will stop being an option. And also, they do a lot of stuff in the evenings, and late nights were not something I could manage for a long time after my brain haemorrhage, so a visit to Sicily might have been better in September or October, or when I could handle evening socialising but HEY. I did do a lot of relaxing, and that was the name of the game.

Also, during my burnout recovery (not brain haemorrhage recovery of course – don’t mention the brain haemorrhage. No no no.) I got in touch with friends that I hadn’t seen for a long time,  I played in the woods and I bought art work. I remembered that I love writing and I wrote a poem for my friends’ wedding which I read out during the ceremony. I rediscovered me.

 

Official burnout recovery was just going to last for July at first. Then I extended it to August. But I still didn’t feel fully recovered. (Possibly because I was a little all over the place…)

For September and October, I reluctantly worked a little, doing the odd job and the odd massage here and there, and starting some new acting training – I wasn’t searching for work, but I was doing it if it came my way. Life was pretty chill. I was still sort of in burnout recovery.

Earlier in the year, I had signed a contract for a job starting in November. I think that knowing I had confirmed work coming up helped me to relax and enjoy my time off work – it made it feel more precious.

By the end of my burnout recovery, I had spent all of the money I had earned before the brain haemorrhage, and all of the money I had earned in my 7 months of 6-day-a-week work after the brain haemorrhage. All of it.

It was worth it.

Shortly before going back to work properly, the BEST thing happened: 18 months after my haemorrhage, I came across the genius idea of facebook groups for brain haemorrhage survivors.

AT LAST – I wasn’t alone. For a year and a half, there had been no-one on the same journey as me. All I knew was of the 2 people I had known who had died of brain haemorrhages. So instead, I had been comparing myself with my healthy friends who hadn’t had brain haemorrhages. Reading other people’s words was a massive relief and I couldn’t believe I hadn’t thought of it earlier. It was so simple.

Then all of a sudden it was November, and I was skipping back to work.

OK, I didn’t exactly skip back to work. In fact, when November came, I didn’t think I was ready to go back at all, and also I didn’t particularly want to go back to work. I had enjoyed my full-time ‘have fun and relax’ job and I wanted to live in burnout recovery land for EVER, rediscovering joy life. 

But I had signed a contract, and the posters had been made and they had my face on them. Oh, and I had no money left. 

So I went. Yes, I had taken the scenic route, and I had spent a lot of money in the process, but once I was back at work, it actually felt AMAZING. Not even kidding.

__________

These are the 2 facebook groups I found for brain haemorrhage survivors like me, but I’m sure there are many others out there:

https://www.facebook.com/groups/145852568776699
https://www.facebook.com/groups/SAHGroupBSF/

I also found an online forum: https://web.behindthegray.net/

 

 

Aaaaaaand, I was off. Back at work – oh I DO like to be beside the seaside!

6 days a week of interactive theatre. Well, I eased in to 3 day weeks at first, but even 3 days of work in a row were a shock to the system. Starting at 10:30, finishing some time after 7: going back to work was HARD. I wasn’t at all back to normal yet, but I did NOT want to admit that.

Because I’m a powerful independent creative woman and all that.

Except, upper body strength has never particularly been my strong point..

And beyond being a woman, I was a gnome again, a STRONG gnome!

Except, I wasn’t really strong or physical any more. And there were no pumpkins, there was no weight lifting, no bulging muscles and definitely no punching (in fact it was MONTHS before I had the energy to get angry at all). All there was was one cucumber that featured in our show, and you don’t need to be superwoman to cut a cucumber in 2. I mean, I did it, twice a week, but compared to the old me, I was no longer fit and active; nowadays I was impressed with myself if I simply managed to stay standing for a full hour.

I had very little energy, and my job needed it all, so I gave it. All of it. I kept my job, but it turned me into a very un-fun colleague, and probably person. For the first few weeks back, in between working, all I could do was lie down on the floor in the dressing room, being very very un-funny. Before the brain haemorrhage, I like to think that I had actually been quite amusing but hey, my memory often fails me, perhaps that’s just a made up memory…

In retrospect, maybe I shouldn’t have gone back to work so soon, but I WANTED to be ok. I couldn’t face the idea that the career I had worked towards for the last 5 years, that I had wanted all my life might be over, and also there were only 2 months left of my dream job – I didn’t want to miss that boat. So I worked hard putting all my energy in, making it look like I was fine when I was at work. I carried on making audiences laugh, and making sure they had a good time. I pulled it off.

Going back to work was hard. My workplace was high-energy, fun, sociable, noisy. And me: I couldn’t do late nights any more, I found socialising in large groups totally overwhelming, I needed a break between activities, and drinking was no interest to me at all. When I wasn’t at work, I just wanted to curl up at home.

Behind the scenes I was really scared that I’d come back too early. I went on and on about it to my colleague, until eventually he believed me, and started to worry that it was true – I HAD come back to work too early, and then I worried that he didn’t have trust in me, even though it had been ME saying it (repeatedly). The whole thing got a bit difficult and it’s embarrassing to talk about it, even now, but HEY that’s what this blog is all about – embarrassing myself on the world wide web for the sake of ART… Nah, but also, I really hope it helps other people feel less alone, because we do stuff like this – we don’t always know what the ‘right’ choice is, because humans don’t come with a guide book and neither do brain haemorrhages.

Afterwards, I remembered something the consultant had said when I’d gone to see him during my time off. I had asked him when I should go back to work, and he had said something along the lines of:

Go back whenever you want. But beware of going back too soon. Not because of your health, but because of other people. If you go back when you’re not fully recovered, people will be watching you, and they’ll say: “Well, that brain haemorrhage really changed here – she’s never been the same since.” And after that, it will be hard for them to change their minds about you.

But I went back when I went back, and after the initial shock to the system, it WAS fine – I settled in, inventing new acts, meeting new people, and loving the bants again (that’s banter, for anyone who isn’t as modern as me). Going back to work was an important part of my recovery, and getting active again really helped. I had fun and I loved bringing the magic to the people. I was closer to being the old me at the end of that job. I don’t find regrets very helpful – everything has a lesson you can take from it. So yes, No regrets. Carpe diem, just do it etc.

 

When the contract finished, I accidentally went straight into a 6 day a week touring theatre job, and when that finished, I did another (but in Italy). So that was two jobs back to back where we had to drive to the venue, set up, perform, take the set down and then drive somewhere else and do the same thing again.  I feel tired just writing about it! When I came home from Italy, I admitted I was tired. There was zero fun left in me.

Looking at it now, even someone who HASN’T had a brain haemorrhage would need a break after working 6 days a week for 7 months. That is a lot of work. So in a way, I was doing really well. I was finding the energy from somewhere to entertain people every day. The jobs were physical and I managed them. Hey, I even managed to make the odd audience member laugh every once in a while.

But after 7 months of performing, after 7 months of hardly any relaxation or ‘leisure’ time, my tiredness caught up with me. My mood was really low. I found it hard to sleep and hard to relax and I didn’t like myself. I wasn’t suicidal, but I regularly wished I wasn’t here any more – it all just felt hard and tiring and I had nothing left.

It can be hard to admit you are struggling. I didn’t want to admit it, because I didn’t want people to see me as having the label of ‘brain injury’. I didn’t want people to think twice about employing me, or to think twice about coming to me for a massage (one of my other jobs). I wanted to be STRONG. I was terrified of losing my career. Fear fear fear bla bla bla. It’s quite tiring.

So much of my identity was tied up with sharing from my fridge. But my fridge really was empty, I had nothing to give. At all. I couldn’t perform, I couldn’t massage, I felt pretty pointless. I needed to fill up my fridge. I had to admit that I was burnt out.

Then I took another few jobs, just to make sure.

Eventually,  13 months after the brain haemorrhage, I officially took time off.

I was going HOOOOME!

Except, I’d been working away from home for months and had sublet my flat out, which meant that I didn’t really have a home… But before I even had time to think about that, my brother and his girlfriend had decided I would be living with them and their 4 month old baby.

I moved in to the spare room and spent a lot of time on the sofa.

Before the brain haemorrhage, I was working 6 days a week in an active job, doing the odd exercise video infront of the laptop when I could, regularly applying for future jobs and extra jobs and cycling or walking wherever I went, running occasionally. I wrote letters, I stayed in touch with friends, I loved my job. Basically I liked “doing stuff”. But this brain haemorrhage made “doing stuff” pretty hard. 

Because brain injuries make you TIRED. Properly properly exhausted tired. The dizzy sort of tired you get after concussion. I couldn’t stand up for long, and I could only walk a little at a time, and slowly. I wanted to see friends, but going anywhere was really hard work, so people had to come to me.

Work was on the phone asking me when I could come back and I had no idea. In hospital one of the doctor-types had said something about it being unlikely that I would make it back to work that year, but hey, I barely remembered that conversation, and from what I read online about my sort of brain haemorrhage, it seemed like most people took 3 months or longer. I thought maybe I could be ready sooner as I was already a lot better than in hospital. We decided on 3 months, to be safe.

A perimesencephalic subarachnoid haemorrhage, with no aneurysm, and no known cause. It was the BEST type of brain haemorrhage (in terms of predicted recovery, and seriousness). But instead of that making me feel reassured, it just made me feel guilty, because I knew there were people out there with MUCH more serious brain haemorrhages than me.

My hospital follow-up enforced all that – it consisted of a short meeting with the consultant where he told me that basically I would be fine; once I felt better I could get on with things as normal; I was at the same risk of a re-bleed as the general public. He said that actually I was in a better situation than him, because at least I had had all the tests and scans done, and they knew there was nothing lurking in my brain. Then we watched a little video of the brain drain going in to my skull and he commented on how well executed it was.

Goodbye. Off you go back home.

So that was my follow-up.

In my 3 months off work, I was ‘resting’.

Except, when I say ‘resting’, I mean: trawling the web for jobs, going to 2 auditions, doing a student film, going up to the Edinburgh Fringe for a play reading, starting singing lessons in a different city, going to acting lessons (although I think I only managed one of them), doing a photoshoot, volunteering, writing thank you letters to all the people who had written to me, crossing the city to see my new boyfriend, and walking my 4 month old nephew round and round the park to get him to sleep.

These activities absolutely EXHAUSTED me.

Look, I TRIED to rest, and I NEEDED to rest, I just wasn’t very good at it. Yes, I lay around a lot – more than I ever have in my life, but after a while, I would feel guilty or lazy or bored or dissatisfied or a mixture of all of those things, and so I’d do something. And then I would be exhausted again.

Leaving the house was difficult, but I didn’t want to spend all my time inside, so I was getting the bus. Cycling was out, because there was no way I had the energy for that. I couldn’t drive, because once someone’s drilled in to your skull, the DVLA write you a letter saying you’re not allowed behind the wheel for at least 6 months because there is a slight increase in your chance of getting epilepsy. So bus it was. 3 months of the bus. [shudder] I hate the bus. I’m such a snob.

Also, my short-term memory was being weird. Someone would introduce themself to me, then I would immediately forget their name and have to ask again. It was the same with directions. One time I popped over to a street party and asked to use the toilet. Hang on, that sounds as though the toilet was the only reason I went there. It wasn’t. I went there to see my friend, and because I was on my way home from my boyfriend’s and the roads were all blocked because there was a cycling race on so I was a bit stranded, and also, perhaps, because I needed the toilet. Anyway, when I asked where it was, I was pointed towards somebody’s house. The woman gave me clear directions to find the toilet in her house (In fact, I think she even gave me two options) but as soon as I walked away from her, I had no recollection at all of what she had just said.

I started to panic – every time I forgot something, I would fixate on it and see it as proof that my brain was damaged. It wasn’t a very nice feeling. But when I talked to friends about it, they would say, ‘I forget what people have just said ALL the time.’ So I decided to just ‘CHILL OUT’ and every time I forgot something, I said to myself, ‘Hey, everyone does that. It’s no big deal.’ (Still, to be on the safe side, I did a lot of sodokus.)

I’ll be honest – even now, I still feel relieved when a friend who hasn’t had a brain haemorrhage forgets something – it makes me feel more ‘normal’. And when I say relieved, I don’t just mean relieved, I mean ‘genuinely delighted’. It’s almost inappropriate.

As for sex, in case you were wondering – I got back on that horse pretty fast. But orgasms were a different matter. Orgasms used to be fun things (one of my favourite things, really); harmless pleasurable things that I would joyfully gallop towards. But now they felt like a risk. Instead of galloping towards the beautiful flaming sexalicious sunset, I found myself pulling the reins, so that I wouldn’t DIE.

I know I know – the consultant had said to get on with things as normal; I was at the same risk of a re-bleed as the general population (and that included orgasms). But then the general population haven’t got the association of ‘Yay amazing orgasm!’ followed by ‘Ow! I think I am having a brain haemorrhage.’ It’s not a fun association.

I used to think sex was just a bit of fun. Now, before starting, I’d have to ask myself ‘Right, where is the nearest hospital, just in case?’ and it seemed even more risky if I was on my own. In fact I stopped bothering with it when I was on my own – because
a) I didn’t know if I’d be able to manage the phonecall by myself.
b) I didn’t want to have to explain to anyone that for this orgasm I had been by myself.

Although here I am, writing about solo orgasms on the world wide web, so I guess that secret is well and truly out now…

On to a more socially acceptable topic –

During my time off, I’d been keeping up to date with work activities on facebook, and it all looked sooooo fun. I longed to be back, bringing the magic to the people. But as the 3 months drew to an end, I started to get nervous about going back to work. Life was all la-dee-da (if that’s how you spell it) when I could go and have a regular lie down in between activities, but that wouldn’t always be possible at work.

Panic.

I was a lot better than I had been in hospital, when I didn’t even have the energy to sit up, but I still got tired after standing up for an hour or so, and often less… I chopped and changed between thinking I was ready and thinking I wasn’t. It mainly depended on what I had been doing just before the thought.

People say ‘listen to your body’ don’t they? But it isn’t always that simple. It just isn’t. It isn’t. The body doesn’t speak plain English. See, back in the day, when I was younger, I NEVER felt like going out (partying I mean). I never felt like it. I always felt like staying in. In the evenings, my body would ALWAYS want to stay in and rest, but I had some persuasive friends, so I ended up going out quite a lot and I had lots of brilliant nights. If I had spent my teenage years listening to my body and trusting myself, I would have been a right loner.

But then there are other times when you really are best listening to the body, otherwise you find yourself at a rubbish party, staring off into the distance, dreaming about your bed. And on those nights, when you eventually manage to sneak home, feeling somewhat rebellious and sooo excited about your bed, the night is tinged with the thought ‘it would have been even better if I had just stayed in all along…’

You see, it is hard, impossible even, to make the ‘right’ choice every time, because you’re not dealing with black and white facts here; I’d spent my whole life learning that the part of me that says ‘stay in and rest’ isn’t always right. And then I had a brain haemorrhage and all of a sudden, staying in and resting was exactly what I needed to do the majority of the time –  I lay down a lot, whenever I could, because I needed it. All that lying down helped with my recovery, but at the same time, it got my body used to doing lots of lying down, and then it became even HARDER to get active again because I’d got so sedentary.

So after a few months, the tiredness was partly my brain being exhausted and partly my body being used to not doing very much – sometimes I needed to listen to it, sometimes it was better to challenge it – I just didn’t know WHAT to trust!

In the end, the only way of finding out if I was ready to go back to work was to do it. I think a part of me knew (but didn’t say out loud) that if it didn’t work out, they could always replace me. As a good friend and employer recently said to me:  ‘There is no shortage of actors looking for work’. (Haha what am I talking about?? – my concept of ‘recent’ has definitely changed since I was a child. He said that to me almost a year ago).

And I had REALLY missed being a gnome. I LOVE my job, and I wanted to get on with my life. It seems I love to push it push it. I wasn’t sure at all that it was a good idea, but then what can we ever be sure of in life??? Off I went.

 

 

 

 

So the gnome house party – that was clearly a very fun party, possibly THE MOST FUN PARTY OF MY LIFE – but sadly, I don’t remember a minute of it. Brain haemorrhages do weird things to your memory. A lot of my time in hospital is a blur –  like the conversation I had on the phone with someone from work (Where did we have this conversation? Who even was it? What did we talk about?), and the visit from my friend’s sister-in-law (did she really come to see me with fruit? I have zero recollection. What fruit was it? Did I say thank you???) and no doubt there are many other things I have forgotten. Who knows – perhaps I answered the question ‘What is the meaning of life?’, or ‘What really WAS the best thing before sliced bread?’, or I discovered who this Larry is who is always happy. But if I did, I have now forgotten it… Blame it on the brain  haemorrhage.

As my time in hospital went on, I had lots of little victories – like walking again, like the brain drain coming out, like moving out of the specialised ward into a general neuro ward, and most memorably – my first pooh.

I was hardly eating, I wasn’t moving, I was on weird painkillers and that all added up to one thing: I didn’t pooh for several days. I think I was starting to feel a bit constipated, although I can’t be sure because my memory from the early days in hospital is so shady. What I do know is that one of the nurses had taken a keen interest in my bowels, as all good nurses should, and she had brought over the potty thing for me several times. When I say potty thing, I mean a potty. The day I eventually managed to produce something, as small as it was, it was a big event for both of us.

Look, I’ll be honest: at the time, I found it VERY difficult to see a positive side to ‘the whole brain haemorrhage thing’, but looking back, there is something quite obvious. A friend on facebook who had had a brain issue herself years earlier sent me this message once I came home:

just enjoy all the love everyone has for you – it’s not often in life that you get such a demonstration

So so true! Yes, it was a lot of love. I was sent loads and loads of messages, cards, letters, gifts, flowers (although they didn’t make it onto the ward because of health and safety), postcards, and the ultimate hospital gift – a Get Well Soon Balloon (WHO sent that by the way??? Was it you???)

I have never been sent that much love in my whole life.  Thank you SO much to everyone who heard my news, and reached out. Looking at all the cards now, I feel really really lucky. But at the time, I felt far from lucky. I was mainly busy wishing that I wasn’t where I was.

I like to see myself as ‘a strong, independent woman’, but in the hospital, I was a very weak, dependent woman. I got dizzy if I even sat in a chair, so standing and walking were pretty impossible for the first week. I saw for the first time why nursing is called a caring profession – the nurses on my ward were absolutely fantastic. Yes, without air-conditioning, the heatwave was tough on me, lying there, barely moving a muscle – but those nurses were on the go! Wow.

And my amazing mum went back into her mum role from when I was a little girl. She stayed the whole time in a local bed and breakfast, and every day without fail, as soon as visiting hours started, there she was. She would read to me (one of the only things that used to soothe me if I had a headache when I was little), we chatted, she would wait if I snoozed, and she became my facebook secretary –  keeping me up to date with people’s lovely comments on facebook, and basically being the best mum you could ask for. I even had some other visitors, which was unexpected because the hospital was in a city miles away from where I’d been working, and miles away from my home town. Don’t ask me what we talked about – I have NO idea.

I was ‘in between phones’ at the time, but even if I had had a phone, I couldn’t have handled looking at a screen. I couldn’t handle listening to podcasts either. It all felt a bit too busy. Not to worry, I had my mum.

A little while after the brain drain was removed, I got wheeled, on dream bed, to the non-specialist neuro ward, where the nurse greeted me by name, and seemed extremely happy to see me. It was almost as if she knew me, although I had no idea whatsoever who she was. It turned out she had looked after me on my first morning in hospital, when I had been at the gnome house party. I got the impression she had rather enjoyed caring for someone at a gnome party.

On day 10, or possibly 9, probably 10, after finding the right painkillers, and having little practice walks, I finally found myself walking around the block!

The walk would probably take a normal person 2 minutes or less, but for us it was BIG news. That day, I felt that I had turned a corner (although in actual fact, it was four…) I was sure that each day I would walk more and more but…

The next day I had a shower instead.

It was quite a long shower, because it had been over a week since my last one, and I had been through a heatwave. I enjoyed it (ie. needed it) so much that I got interrupted by a banging on the door before the end because I was flooding the ward. Oooops. There was no walk around the block that day –  it turns out that showers are really really tiring. That was interesting information to me.

A lot of tests and scans were done on me in the hospital, and they found no obvious cause of the bleed. This was good news – it put me in the best possible group for recovery. Also it was a perimesencephalic (pronounced Perry meezen keffalic) subarachnoid haemorrhage which is the best possible brain haemorrhage of them all.

Jackpot!

And all of a sudden they were discharging me from the hospital. After 11 nights in dream bed, it was time to move on, to an inferior bed.

LET’S GOOOOOOO!!!

Oh…

Hang on…

Where are my shoes?

Ah. I had no shoes. It hadn’t particularly been a priority when we’d got in to the ambulance. So mum went down to the hospital shop: “Do you want slippers or sandals?” She asked. “Sandals please”, I replied. Mum returned with slippers. I guess they were a more sandals-style of slipper. Whatever. They were something for my feet and we were going HOME!!!

Well actually, we spent a night in mum’s faithful bed and breakfast, because it was quite late by the time they discharged us. But still, after that, we’d be going HOME!

I find it a bit weird how easily I accepted the idea that my life was over. I wasn’t scared. It didn’t make me sad. What DID make me sad was after the brain drilling operation, when I came around again and had hardly any energy, and they told me they didn’t know if I would ever recover 100%. THEN I got sad, and that is when I SHOULD have been rejoicing, because I had my precious life back! But my precious life felt rubbish – I was tired all the time, I didn’t have the energy to even stand up, I was constipated, and needed help with washing and going to the toilet. I didn’t have an appetite and I was drinking my water out of a little tommy tippee plastic cup. I felt soooo sorry for myself. It was no gnome party, I can tell you that.

It had felt easy to say goodbye to life after I’d had a great day, but now here was life: it was back, and I was GUTTED! Then I felt sad about that, and gave myself a hard time for being so ungrateful, and I think for a while there, I wished I had died.

You know, when you say goodbye to someone, and then you bump into them again and just want to pretend you haven’t seen them, because you’ve already said goodbye, and even though you love them, saying hello again after a goodbye feels awkward? It felt like that. But with life.

Ah who am I kidding, I wasn’t a gnome any more, I was just a miserable person with no prospects, with a drain coming out of a hole in my skull where it had been stapled in place, and on the end of the drain was a bag full of pink brain fluid that followed me wherever I went. Not that I went anywhere. I cried a lot.

I remember some of the nurses being a bit concerned because I seemed depressed, but looking back now, I had gone from my ace job, bringing magic to the people every day, whether as a gnome or a superhero, to lying in a bed is ALL day. Here is an extract of a post my lovely sister in law posted on facebook, keeping people updated about my progress:

Her brain will permanently be impaired to some extent which could mean it takes a moment longer to find her keys or more serious memory issues but she is very much Ruth; she helped at the crossword and told Mum off for reading the clues and answering them at the same time, “Thanks mum, give me a chance, I have just had a brain injury you know”. As a rule of thumb you get 80% of the recovery over the 1st year. Given her work he though it is unlikely she’d be able to go back before Oct. Basically it is to early to say much but think marathon not sprint.

I was devastated about the idea of not going back to work. As Kevin the teenager would have said: ‘IT’S SO UNFAIR!!!!’ So, yes, I cried a lot. And the whole thing to me looked like a bad thing – I could see no silver lining.

It’s weird, some of the most difficult things from my time in hospital were the things they don’t tell you about; the insomnia because the ward never slept, the constipation because I wasn’t moving; the agony of accidentally drinking too much water and the catheter tube not being big enough to cope, and the excruciating pain of starting to use my muscles again after over a week in bed.

Aaaah, my hospital bed, the only silver lining I could find in hospital; I LOVED my hospital bed. I loved it so much! I could make it go up, or down, or slant me, it was comfortable, and it was on WHEELS so I could travel places, but remain in bed. I’m sorry, but dreams don’t come much better than that!

I stayed pretty much exclusively in dream bed for just over a week, too tired and dizzy to stand up, or even sit in my chair to eat. When I felt a bit better, and because the nurses were encouraging me, I started experimenting with walking a few steps. What had happened to my muscles??? They had seized up or shrivelled up or atrophied or whatever the correct word is. I don’t know what had happened, but I do know that walking was SO painful I would cry out. I was scared something really bad had happened to me, but over the phone, my physio friend assured my mum that it was alright, and just to keep at it.

And then, I discovered the world of painkillers. It is bigger than just paracetamol. You probably already knew that, but I didn’t. I worked my way through them, finding out which one worked the best. I definitely didn’t like morphine. Tramadol was pretty similar, and immediately made me sick, codeine kept me constipated, the basic painkillers (were they paracetamol? I’ve forgotten) weren’t doing anything, and I eventually found some other painkiller, whose name I have now forgotten, which saved me. Hooray! Long live the painkiller whose name I have forgotten. Spread the word far and wide, it is the best one!

Although, my memory of my time in hospital is somewhat shady, I definitely do remember my EVD being removed. The External – ventricular drain, or as I preferred to call it the ‘brain drain’ stayed in for 8 days, then out it came, and I was sewn back up using a single stitch.

One little stitch? No. Big. Deal.

The tricky thing about the single stitch was that it had to be done without anaesthetic, because it was so close to the brain. But hey, I’m strong – I was fine with that! The cute doctor came and talked me through it and I was having some quality banter with him. At least, it was the closest I had come to quality banter since being in the hospital. The extreme tiredness had had a negative impact on my ability for quality banter. For some reason, making people laugh had just stopped feeling quite as important as usual. The ‘quality banter’ quickly dried up as he started doing the stitch though. I went very very quiet. Ow it hurt. But then it was done, and it took me weeks to realise where the actual hole in my skull was, because it wasn’t at all where the stitch was. Nowadays, I find it quite reassuring to stroke the dent in my head – it is subtle, but it’s still there.

The brain drain being removed was cause for celebration. Here is the celebratory photo we took:

So two years ago today, out of the blue, I had a brain haemorrhage.

‘It must have been so scary!’ said pretty much everyone I have ever spoken to about it. But it really wasn’t. Unless my memory is playing tricks again…

‘How did it happen?’

OK this is the awkward embarrassing bit that I wish people didn’t ask, but hey, it’s an innocent question.

Maybe it was due to my excitement over meeting Mr Tickle earlier that week, maybe it was due to the little crash that I had on a bike where I’d banged my head the week before, or maybe, as mum likes to think, it’s because I was trying to do too much. Although the doctors in the hospital wouldn’t back her up on that one, no matter how much she tried to persuade them to tell me to slow down…

The fact is that a lot of brain hemorrhages occur after a sudden rush of blood to the brain, during physical effort or straining; coughing; going to the toilet; lifting something heavy; or having sex.

And that is how it was with me; I had just had sex, and as soon as I had orgasmed, I knew that something was wrong. People use this phrase ‘thunderclap headache’ but that wasn’t what really sprang to mind for me. I guess I’m less poetic. For me, it was just ‘pressure from the inside out.’

I had a headache, but not the sort of headache where it changes depending on standing up or sitting down, being stroked or opening the window. Nope, this headache just WAS, it was constant, and it was pressure from the inside out. My exact words were ‘I feel like I’m having a brain hemorrhage.’ Wow, how self-aware am I????? (Incidentally, self aware people are apparently modest. Which is a real shame for me, because I know, for sure, that if one day I happened to be modest about something, I would be making a MASSIVE deal about it. Shame, because I would really quite like to be self-aware…)

I lurched around the bedroom trying things to make my head feel different. I lay down, I stood up, I headed to the window desperately trying to open it, but not managing, then it was the bathroom. I vomited, poohed, vomited and poohed again and curled up on the floor, asking my new boyfriend who wasn’t even my boyfriend to call the NHS.

When the paramedics came, they vaguely gestured over my head that there was a brain issue. I knew what was going on around me, but I was in a lot of pain and I felt sick. Talking felt hard, so I let them go on talking about me as though I didn’t understand.

They carried me down the slippery metal steps in the rain, and I felt guilty about how heavy I was, as I vomited into the cardboard vomit hat, and apologised.

Cardboard vomit hats – what a great invention! I guess it just got impractical, all that washing of bowler hats full of vomit, so when cardboard turned up on the scene, whoever it was that invented the cardboard vomit hat must have been VERY proud of themself. I, for one, am happy that I wasn’t vomiting into an actual hat – I felt guilty enough about being carried down the slippery steps in the rain, without adding guilt about soiling a paramedic’s lovely bowler hat.

There were two people I knew of who had had brain hemorrhages – my best friend’s brother, and an old colleague. Both of them had died. So in my head, that was what happened after a brain hemorrhage. In the ambulance on the way to the hospital, I made my peace with dying. I’d had a good life I thought; at least I’d given the whole ‘making a living out of performing’ thing a go, and I’d succeeded. Plus, that day I had done my absolute favourite act, and it had gone well. It was just me, as a gnome, dashing around greeting as many people as I could. Yes, I had finished on a high – I could die in peace.

At the first hospital we got to, they injected me with morphine, which makes me feel sick now just remembering it. I hated it. No concerns that I will ever become a heroin addict. After that, they did a quick scan and announced that I’d had a small bleed on the brain.

“Will I die?” I asked.
“Not on my watch.” he smiled.
Those were not reassuring words; his watch ended shortly after the words were spoken, as I was promptly shipped off to a larger hospital.
“Not on my watch.”
I remained convinced I was going to die. And honestly, I was OK with that.

When we arrived at the larger hospital, around 5 hours after the bleed (and over 2 hours driving), I eventually said, ‘OK, you can text my mum and brother, but don’t call them; I don’t want to disturb their sleep.’

I find it ‘funny’ that I was convinced I would be dead soon, and still, I thought: ‘Well, sleep is important, so they might as well have a good night before they find out the news.’ Or is it that I have a real issue about troubling people, or asking for help…

That night, I lay in a dark ward, with an awful headache, vomiting intermittently, unable to sleep. I was so busy feeling sick that I didn’t have much chance to feel scared. The dark night was broken up with the odd trip through the bright corridors for a scan, and every so often I would get a visit from a nurse who would get me to push their hands away, or pull their hands towards me, then ask me a couple of questions about my name and where I was. Apparently the accuracy of my responses started to deteriorate the following day, and I ended up hallucinating, answering that I was at a party of gnomes, back in my home town.

I had developed hydrocephalus (too much fluid on the brain), and surgery was required. They planned to insert an EVD (extra-ventricular drain). It involved drilling into my skull and inserting a drain that would then be secured under my scalp with staples.

THAT bit was scary – for mum and my brother, who had only just turned up, and the guy with me. The risks were read out; it was the least dangerous form of brain surgery – but it was still brain surgery. There were plenty of risks.

Scary.

But not for me; I was at a party full of gnomes, having a mad old time, and it’s not often you’re at a party full of gnomes.

Actual footage of the gnome party. Ok, fine, it is the best I could find from a quick Google image search. Please let me know if you find a more appropriate image. (Not outdoors though. Yes, my memory of the gnome party is hazy, but I am pretty sure it was a house party.)

I wrote this blog because this blog was all I wanted, while I was recovering. Brain haemorrhages are rare. Perimesencephalic brain haemorrhages are rare. And perimesencephalic brain haemorrhages with an IVD are even more rare. I didn’t know anyone who had had a brain haemorrhage and survived, so I had no-one to compare stories with. I just wanted to read stories from other people who had been through the same journey as me. So here it is, my story.

Good company in a journey makes the way seem shorter. — Izaak Walton

ps. I’ve posted the blogs in chronological order, but the new ones go to the top. So if you’d like to read about it as it happened, start at the bottom. Sounds a bit like something from Alice And The Looking Glass…