The Rollercoaster World Of Recovery

Recovery is a rollercoaster. It goes through so many highs and lows on a weekly, daily, or even hourly basis. When I first came into hospital, it was a fairly tame rollercoaster ride. There was the odd bump, and a fair few dips, but there were rarely any highs, and on the whole, things were very flat and grey. I couldn’t feel emotions because my brain and body were so starved.

These days I can definitely feel emotions. Sometimes they’re intense, sometimes they’re background noise. But I’m always feeling.

This isn’t a bad thing! Sometimes it might feel like a bad thing because the lows can be hard to cope with and being curled up sobbing isn’t my idea of a good time. However, on the whole my mood is better than it was, and the highs make it all worth it. So worth it. I’m finally able to live again. I’m able to experience life and engage with the world. It’s overwhelmingly amazing.

I thought I’d run through yesterday to give people a bit of idea of how all-over-the-place recovery can be. People often wonder what happens on an eating disorder unit, and to be honest it’s probably not as exciting as people think, but anyway, here is some of yesterday:

6.30: I’m woken up by my alarm. On Mondays and Thursdays we have to get weighed before 7am. So it’s one of my early start mornings. I stumbled out of my (very hard) bed and into the bathroom across the hall, then walked down the corridor to wait to be weighed (which can sometimes feel like waiting to be kicked in the head). Weigh-in completed, I sloped off back to my room. I was tired, my head was kicking off, I felt nervous and anxious, and my mood wasn’t the best.

6.45: I started packing to go home. I was pretty stressed and all over the place with thinking about going home and ‘what if I forget stuff?’ and various other things. But I was also excited.

7.00: I sat on my bed, laptop out, and did some work. I went back to Blurt for 4 hours a week last week which is one of the best things ever and really helpful for my recovery. I got absorbed in my work for a bit.

8.00: Breakfast time. I was still anxious and my mood wasn’t great. I can’t remember the specifics of breakfast yesterday – they all merge into one. But it involves coming up table by table to individually pour out our cereal while a staff member watches to check we’re doing the right amount. We have 10 minutes to eat it in. Then we go back to the lounge for morning meeting and 40 minutes rest.

9.15ish: I went to Asda with some friends. We were going to see The Script that night, so were picking up food for the car later on. A group of patients with anorexia all trying to buy food at once could be a bit of a drawn-out and disastrous experience, but we actually managed it okay!

10.15: Mid-morning snack time followed by 10 minutes rest. I was still feeling very jittery and all-over-the-place.

10.45: Normally creative group is on a Thursday morning, but nobody wanted to go this week. Emotions were running a little high on the ward – there were a few people leaving and a new person being admitted. So there was a general feeling of anxiety and a fair few tears. I went to my room to do some “homework”. I had to fill in a sheet for BAT 10 (body awareness therapy 10). This was tricky. The day before I’d started mirror exposure which had left me curled up in tears for a long time feeling completely and utterly hopeless, scared, uncertain, and lost.

12.00: Lunch time. Similarly to breakfast, we’re guided when portioning. I sat on a table with some lovely, hilarious people and we had lots of laughs. I had a discussion with one of the HCAs (Health Care Assisstants) about something. She said she trusted me on the thing we were discussing, I asked her if she always trusted me and she said not always – it was a stark reminder that anorexia can still turn me into a complete and utter knob at times. My friend did comment that I was a bit quieter than usual. I was just really tired.

13.05ish: Lunch rest. I didn’t know what to do with myself because I couldn’t settle on anything. A few of us googled lots of funny animal facts which was a good way to pass rest and was a great distraction. It also lifted my mood a little.

13.40: The ward doctor grabbed me. Despite being weight restored, my body still isn’t quite behaving itself which is really frustrating and very hard mentally. I checked whether I can drink alcohol on all the meds I’m on; she told me to go for it!

14.00: My OT (occupational therapist) found me and we had an unexpected appointment. It ended up being 45 minutes and brought up a lot of stuff and gave me a lot to think about, but it was really helpful.

14.45: As I was walking back down the corridor, my dietitian grabbed me and we had a quick appointment.

15.00: Afternoon snack time! Rest was cut short by the psychology group and then I spent about 5 minutes running all over the place trying to find everything I needed because some of it was accidentally packed, some was in the lounge, some of it was in another communal area – I was just very nervous and scatty.

15.15: MANTRA (Maudsley Model of Anorexia Treatment for Adults) time! This is a psychology group which some of us attend. It was a bit of a mind-blowing and confusing group, but interesting and useful.

16.30: Time to grab bags, meds, and leave! I was going on leave a bit early because of going to The Script concert with three other patients (we were very nervously excited!). There was a bit of a problem with my meds and the new prescription. But some absolute stars in the form of nurses sorted it out for me, and off we went.

16.45: We all had our tea in the car on the way to Scarborough. We chatted, laughed, and sang to the radio the whole way there.

18.30ish: We arrived. The sea air was so fresh. We breathed it in deeply and discussed how much we’d love to bottle it up and bring it back to the ward. There was a steep hill to go down to the theatre which we ran-walked down. We felt so free. On the way in there was a little train which a friend and I promptly clambered into for a photo. I had my first alcoholic drink in 2.5 years. It didn’t take long for it to go straight to my head which resulted in an awful lot of giggling. The Script were incredible! We danced, laughed, sang, loved, hugged, took photos, and smiled the whole time. We lived. We really lived. We experienced it all.

22.30ish: The concert ended. We were on such a high. We discussed how much we wouldn’t have been able to do that had we not been at the point in recovery that we currently are. We’d booked the concert on a whim a few months before whilst on rest after breakfast one day (an advert for it had come up on TV). We got back to the car and had supper before heading home.

23.30ish: I arrived home to my brother. He was staying over because we had plans for the next day. He’s never stayed over at my house before so that in itself was super lovely. After reflecting and journaling, I headed to bed feeling tired but so happy, so content, and so motivated to keep pushing forward.

Recovery is one of the hardest things I’ve ever done, but I want more nights like this. It’s time to start living.


Healthy Body, Healthy Mind?

It’s been a while since I blogged. I’ve been spending the majority of my life either asleep, in treatment sessions, or out there, living life.

I’ve been getting a lot more leave. It’s weird being ‘outside’. When I came into hospital, anyone who looked at me would have known that I have anorexia. I was very underweight. I was physically very poorly and frequently in and out of medical wards. My secret was out, not just to those I knew, but to the entire world.

I’m physically more stable now. I’m at a healthy weight. Walking around, strangers would have no idea that I’m ill or in hospital. They’d never know that I have anorexia.

Physically, a lot has changed. However, mentally I still struggle. I’m not as trapped or as scared as I was when I first came into hospital all those weeks ago, but I’m also not ‘well’. I’m not recovered or ‘fixed’.

I still struggle. I still have swirling, whirling thoughts going round and round and round my head. I still end up in endless mental circles which can leave me feeling trapped and frustrated. I still struggle with body image to the point where it can be hard to leave the house.

I’m an anorexic brain trapped in a ‘healthy’ body.

Often when I’m walking round, I feel like I have a sign on my head. ‘This person is in hospital’. ‘This person is messed up’. ‘This person requires nurses younger than her to tell her to add three more branflakes to her bowl on a morning’.

Sometimes I wish I had a sign on my head. Maybe then people would know. I don’t know why, or if, I want them to know. I don’t know what I want them to know. I think I just sometimes wish that people could appreciate how hard it can be to enter the supermarket and buy a bag of rice.

There are so many quotes that go along the lines of not judging people. About not knowing what people are going through, or what their story is, until you speak to them. And it’s true, you don’t.

Eating disorders are mental illnesses with physical side effects. Mental illnesses are invisible. You can’t usually work out a person’s diagnosis just from looking at them. But that doesn’t mean they’re not struggling.

I look ‘normal’ now. But my brain is anything but. I still struggle, and one of my main coping mechanisms has been taken away, so in many ways things are even harder than they were a few months ago.

Please don’t think that your weight restored friends/family are ‘fine’ now. We still need your help, your love, and your understanding. We might look ‘better’ to you, and you might be overcome with relief that we’re not looking so much like we’re about to drop dead when you see us, but we aren’t ‘better’, (and even looking ‘better’ is a confusing and anxious situation to be in).

Nobody on this ward has a sign on their head listing their problems. But that doesn’t mean we’re not struggling. It doesn’t mean that we’re not still incredibly unwell. It doesn’t mean that we don’t need support any more. Being weight restored just means that we can take some of the focus away from our physical health, and start to look more at working on the mental side of things.

The World Is A Noisy, Noisy Place

This week I left the ward for the first time in five weeks. In those five weeks, the only time I’ve had contact with the open air, is through the odd trip down to our little courtyard (surrounded by a tall, opaque fence), a few trips down to stand at the front of the hospital (a change of scenery from the courtyard), and a trip to another hospital for a bone scan (a taxi from door to door).
I’ve been given my ‘hours out’ this week. This means that I’m allowed to leave the ward alone three times a week for one hour at a time.

One of the HCAs on my team took me out for half an hour on Sunday, just to see how I managed with it. From this week, I can go out alone.
You can’t do a huge amount in an hour when you don’t have a car. But the hospital that I’m in is opposite a small shopping park, containing an Asda, McDonalds, B&Q, B&M and Carpet Right. This means that the go-to destination for us all is Asda. This might not sound particularly exciting, but when you’ve been stuck in a building for four weeks (and are heading to get some different flavours of tea and coffee), it’s quite an exciting trip!

Leaving the ward after being inside for so long, is highly anxiety-provoking. As much as it can be exciting, it can also be terrifying. This fear is the reason that I’ve not pushed for my hours out any sooner. People reading this might think that this is a bit odd. After staring at the same few walls for weeks on end, why wouldn’t you want to get out as soon as possible?!

The thing is, the ward is safe. The ward is familiar. As much as there are times when I hate it, as homesick as I get, and as much as I become frustrated and upset over my lack of independence, it is a safe space. It’s predictable. Everything runs according to a timetable. I know the names and faces of everyone who appears. The ‘unknown’ has largely been removed.

It’s very artificial. It’s not real life. But it’s predictable, and I take comfort in the rhythm of the ward, and the routine that it follows.

The outside world is a stark contrast to this. It’s noisy. It’s messy. It’s unpredictable. Nothing happens according to a timetable or a routine. You encounter strangers at every turn. People look at you. People talk to you. People invade your personal space.

This hospital is on a main road and oh my goodness it’s noisy. Noise is something I’ve struggled with since coming to the ward. Having lived alone prior to arriving here, the constant chatter (and noise from other wards, and beeps from the alarm), have taken a lot of getting used to. Five weeks in, I’m still struggling with it at times, but I’m a little more accustomed to it than I was. I thought I’d pretty much sorted my noise issues, but the noise of the ward is nothing compared to the noise of the main road.

I haven’t been out since my first trip. Partly because the whether has been naff. Partly because I’m trying to spread out my hours. Partly because my anxiety is bubbling away again. My brain thinks that something bad could happen. My brain isn’t used to the noise and the people. My brain needs to get used to it all again.

Trapped In A Snow Globe

For a couple of weeks, now, I’ve been trapped in a snow globe. One of those things that you are occasionally gifted as a child. A pretty scene or photo surrounded by plastic flakes of white stuff.

As a child I would enthusiastically shake it up; watching the plastic pieces create a blizzard, hiding the image enclosed. It would keep me occupied for a while – watching as the flakes slowly calmed down and covered the floor below. It would never get completely calm, though. I never let it settle. As soon as things began to die down, I would shake it up again. I much preferred to watch the chaos than the calm.

My scene isn’t the prettiest or most picturesque at the moment. I am on a ward getting some help with things I have been struggling with for a long time. It’s probably not an image you would choose to encase in plastic and display on the mantlepiece for everyone to see.

However, in some ways my current scene is beautiful. It’s a scene of some of the kindest, gentlest, most caring and selfless people I have ever met. It’s a scene of incredible people changing their lives for the better. People who have been struck down by an illness doing its best to kill them and destroy their lives. People with so much resilience and strength that one day, they will be unstoppable. People who have decided that enough is enough, this illness isn’t going to kill them – they are going to kill it. The process is rarely beautiful, often messy, and almost always the hardest thing we have ever done. But the people that I have met so far are all beautiful.

My life has been shaken up in a similar fashion to the way that child-me, enthusiastically played with a snow globe. I hardly know what is up and what is down any more. I feel like I have been shaken and shaken until I’m utterly dizzy and confused. Nothing makes much sense. I don’t know which way I’m going or what I’m doing, if I’m honest. Rules and beliefs that I’ve had for years are being torn apart on an hourly basis. I struggle to understand things that make so much sense to others that they don’t even think about them. Some of these things make me cry, make me hide, make me want to run a thousand miles in any direction, just so long as it’s as far away from here as possible. I feel permanently confused and disorientated.

I live in continuous chaos.

At the moment, my snow globe never settles. There is little calm. The ward can be busy and it can be noisy. A stark contrast to the quite life I was leading at home. The people and noise often feel as though they’re bouncing off my body like sharp plastic pieces of snow. It fills my brain up. It’s a non-stop buzz and creates so much white-noise in my head that I can’t think. Sometimes it hurts. Sometimes it makes me cry. I crave peace, order, and calm. I crave my own space. I miss my house.

It can feel as though I’m trapped here. Though I am here by choice, able to go down to the courtyard unsupervised, and allowed to escape to my room, there are times when I have to spend emotionally difficult times surrounded by others. I can bury myself under a dressing gown or some crochet, but jumping out of the window would probably be frowned upon. I don’t have any leave at the moment (I’m very new here), so though I have internet, TV, and my phone, I am largely cut off from the outside world. In many ways that’s a relief.

This snow globe is where I need to be for now. I know that. Despite often thinking to myself that I want to escape, or to return to my old life, I know I need tot be here. My old life was ordered and ‘safe’, but apparently it wasn’t sustainable. My body stopped letting me do it. I don’t believe it (yet), but those I trust have told me that it was killing me. So, for now I’ll continue to live in this snow globe, and hope that eventually it settles down.

Breaking The Blogging Silence

It’s been a little silent on here. In fact, it’s been a whole 83 days since I last posted anything, which is probably the longest I’ve gone since Mum died.

I thought I was trundling along fairly well with grief (and life). I figured that maybe after two years, I might be beginning to move on.

In many ways I have. In many ways the ache is duller. The daily thoughts aren’t always daily. The paralysing grief attacks are fewer and further between. I’m not sure I’ve actually dealt with anything, though. I don’t think I’ve worked through anything. I’ve tried whacking grief on the head with a metaphorical mallet every time it pops up like some strange internal whack-a-mole. I’ve tried distracting from it. Sometimes I even let myself feel it a little, and cry a little, or get angry for a few moments. Occasionally I’ve tried to write about it or paint it.

But have I actually dealt with any of the thoughts, feelings, anger, guilt, resentment, life changes or anything? Nope, not really.

Turns out you can have the house, the job(s) and the car. You can paint make-up and a smile on your face each morning. You can pick up all of these pieces of a flat-pack life, and build them into a magnificent den around yourself, with a big sign on that says ‘I AM ABSOLUTELY FINE AND NAILING LIFE NOTHING TO SEE HERE’. But if you’re not okay, you’ll still sit in the den shaking and crying half of the time, and eventually bits of the den will begin to fall away and expose you for the struggling, human, person that you are.

In my case, the big thing to fall first, was my health. It started slipping and I kept trying to patch it up, but the more it slipped, the more tired I became, and the further it fell, until the big ‘health’ bit of my den came dramatically crashing to the floor in a fairly epic fashion; and on the floor it has remained. Once that went, a few other bits started to go, and here I am, four months later.

One thing that my health dragged down with it was the little self-confidence I had. I can’t even look after myself, so what good am I likely to be at anything else? I doubt every conversation I have. I doubt every decision I make. I doubt everything I do. I walk around with my head down (if I can’t see them, they can’t se me… right?). This has massively impacted my perceived ability to blog.

I have had a whole range of ideas for blog posts I could write, but I quickly dismiss them because with so many voices out there shouting into the internet, who’s going to care about what I have to say? I’m not sure I have anything of value to add to the all-too-cluttered internet-land. (I’m not sure anyone will be particularly interested in this slightly-vague update, either, but I thought that if I broke the blogging silence it might help me to start writing again). Add that to the pitiful excuse of a short-term memory, and total lack of concentration span that come with being rather less well than I should be, and we have one neglected blog.

Looking forward… I think I need to start writing again. I think I need to admit that this whole grief-thing might not be quite over yet, and that writing could help. I want to sort my blog out. I don’t just want to write about grief. I want to write about life and all that entails; art, home, adulting (or trying to), all the messy ups and downs of life, not just the crap bits. I really don’t like my middle name and never have, so I’m not quite sure why I called it that in the first place and I think it needs to change (though I’m not sure what I’m going to change it too, yet). I also want to make it easier to share some of my art. Again, I’m not sure how to do this yet, but I’m sure I can work it out. It’s all going to take time, but there’s no rush. Offline, I’m trying. I’m doing my best to keep myself alive, even if it doesn’t look like it at times.

So, that’s where it’s all at. That’s an incredibly vague explanation for the silence, and an even more vague idea for the future. Thank you to whoever has got to the end of this.

I Shouldn’t Be Surprised By Lack Of Stigma

This weekend, I went for an eye test at a well-known supermarket. It’s something I’ve been avoiding for months. Partly due to cost, partly due to my struggle to do anything self-care related.

Anyway, this particular supermarket do eye tests for free, so I figured there was nothing to lose, so I finally booked an appointment and got myself down there.

As part of the eye test, they ask you what medications you’re on. This question comes up occasionally… at the dentist, when applying for a driving licence, when visiting a walk-in GP or seeing a new health worker. Whenever the question comes up, it feels like time stops for ten seconds. I can practically hear my heart beating in my ears. I debate whether or not I should disclose the whole list of medications that I’m on.

Being 23 and on a list of medications is hard. When that list contains mental health medications, it can feel really hard.

I worry about people judging me or treating me differently. I worry about how they look at me – sometimes with curiosity, sometimes like I am an alien, sometimes with those overly sympathetic ‘oh poor you’ eyes. I don’t quite know which look of these is worse. I don’t particularly enjoy any of them.

Anyway, during the eye test, he asked me what medications I was on. To begin with I was very vague. I always start with the medications I think they won’t have heard of, just to test the waters. So I did that, which resulted in the question ‘what’s that for?’. At that point, I realised I was going to have to go all-in, so I brought the list up on my phone (I can never remember them all), and gave him the full list of all my medications.

The optician was absolutely fantastic. He was kind. He didn’t treat me any differently at all. He even disclosed a little about his own mental health experiences. He took my medication history into consideration and really listened to me.

I left the appointment and began to think about it. I was just so surprised by his reaction – or rather lack of reaction. I was pleasantly surprised. It’s incredibly rare to meet anyone with no stigma, even in health settings (especially in health settings).

Then I began to think about it more, and actually, I shouldn’t have been surprised. I shouldn’t expect stigma. I shouldn’t have to worry about listing my medications. Whoever is talking to me, is speaking to exactly the same person both before and after they know that I need a bit of help in order to function.

Mental health medications are there to give a helping hand to those of us whose brains aren’t quite working as they should. I take asthma medications to help my lungs, I take mental health medications to help my brain. It’s no different.

When we have a mental illness, life is hard enough. We already spend our life doing our best to do normal human things, whilst battling a brain determined to kill us. We really don’t need additional problems on top of that. We really don’t need people to treat us differently. To speak to us like we’re stupid. To decide that we’re not worth their time. To look at us like we have three heads.

Occasionally, we might need certain allowances from people – but we will normally tell you if that’s the case! Until that point, just interact with us in the way that you would interact with anyone else.

We shouldn’t be surprised by lack of stigma, it should be normal.


You Are Succeeding By Surviving

It’s that time of year again where people happily share their incredible uni results, graduation photos are imminent, GCSE and A-Level results are just around the corner, everyone seems to be passing their driving tests, getting new jobs, getting promotions, getting engaged, moving house, and digging wells in African villages, all at the same time.

For some of us, none of these things are true.

Some of us are trying our best to stay alive, and that’s pretty much all we can manage. Many of us have dropped out of university degrees (if we ever got there in the first places). Lots of us have had to put our GCSEs or A-Levels on hold (or if we do manage to sit them, we don’t achieve anything close to our potential). Some of us are unable to drive until our medication settles and/or our health improves. Lots of us aren’t able to hold down a job, or if we can, we’re on reduced hours. If we do have a job, it might be miles away from our dream job – we’re just not well enough to even apply for those kinds of jobs. Many of us struggle to maintain friendships, never mind even attempting a relationship. A lot of us are still living with our parents or other family members, because we need them to help care for us. Many of us can’t travel further than the end of our garden without a panic attack, if we can move ourselves at all.

Being in our late teens/early twenties, we’re expected to be carefree. We often don’t have responsibilities for anyone other than ourselves. We’re expected to spend time having fun, going out, working out who we are and what we enjoy, and generally making the most of life.

But that’s not always the case. Sometimes we don’t have that luxury, because we’re simply not well enough. Life can play a cruel hand at times.

It doesn’t mean that we’re not achieving and succeeding, though. Our success might just look a little different to others.

Sometimes success is taking PRN, even if you feel like we are ‘giving in’ by doing so. Sometimes it’s getting to bed by 10pm each night, even if it makes us feel like a granny. Sometimes success is learning how to say ‘no’ to things that hurt us. Sometimes success is forcing down 3 meals and 3 snacks a day, however loud our heads scream. Sometimes success is getting our notifications down to zero. Sometimes, success is taking our meds as prescribed. Sometimes success is dragging ourselves down to the GP even if we feel we don’t deserve it, or we’re wasting their time. Sometimes success is making it into town alone. Sometimes success is letting our family members and carers help us. Sometimes success is navigating the benefits system. Sometimes success is just showing up – whether it be to school, to work, to a class, or somewhere else. Sometimes, success is allowing ourselves to do the things that we enjoy.

Sometimes success is simply doing what’s best for us. It’s taking care of ourselves. It’s continuing to stay alive, whatever is thrown our way.

To all of you who are feeling pretty rubbish at the moment because everyone seems to be succeeding and progressing, and you feel like a sad, stuck, blob… I want to remind you how wonderful you are. Continuing to wake up every day despite all the setbacks you encounter is so brave. It’s so admirable. It’s so incredibly strong. You are succeeding by waking up every day, by showing up, by never ever giving up. You are awesome.