We All Have A Story

Every single one of us has a story. We’ve all been on a journey since the day we were born. We all have anecdotes of funny things that have happened. We’ve all had times where less-funny things have happened and life has thrown us a curveball which has changed the direction we’re travelling in.

But when our journey involves mental illness, it can be hard to talk about. Sharing it becomes a struggle. People ask us what we did last weekend and we haven’t got a clue how to answer because last weekend we were struggling to breathe under the weight of depression/in hospital/hiding under a blanket or something. You can’t really answer the question ‘wheat have you been up to lately?’ with ‘trying to survive’.

So our story becomes holey. It contains blanks. Black holes of difficulties, tears, resilience, strength, and courage.

My personal story is 24 and a bit years long. It’s had many ups and downs. It’s had lots of twists and turns. At times it’s been a comedy, there are times when it’s perhaps been more of a tragedy. But it’s mine.IMG_9155

I’ve been very open with some parts of my story (you can’t really hide the fact that your Mum is dying, or that she’s died). But there are other parts of my story that have remained hidden. Bits that I haven’t wanted to admit to myself, never mind anyone else. Bits that I’ve felt ashamed or guilty about. Things that get so messy in my head that I don’t have the worlds to put them down on paper.

Sharing our stories can be incredibly freeing. It can feel like pushing a ten-tonne weight off our chest, standing up and announcing to the world ‘This is me! This is who I am! I’m not going to hide any more!”. But it’s also so hard. It can leave us feeling very vulnerable. In writing them it can bring up a lot of difficult things.

I wasn’t going to share any of my story today, but in seeing all of the #WeAllHaveAStory tweets on Twitter, as part of the #BigBlurtathon, I’ve been inspired to share a little bit of things I’ve previously not shared. So with a deep breath, and a heck of a lot of coffee, here goes!

I’m no stranger to mental illness, or life being a bit of a knob. I’ve had depression since a very young age – something I’ve blogged about once or twice. My Mum was diagnosed with cancer when I was 18, became terminal when I was 20, and died when I was 21 – something I’ve blogged about extensively. I’ve also had an eating disorder for about 12 years. That’s the bit I’ve not written about.

I’ve not written about it because I feel/felt guilty. I feel/felt ashamed of it. I feel/felt like it was my fault, like I was doing it to myself, like I was ungrateful for intentionally starving myself when others have no choice but to starve. Keeping it secret helped the illness to thrive and I needed the illness for a long time. For a long time it kept me alive.

I’ve not been immune from the side effects of this constant attack on my body. But I barely recognised it as anything other than “oh well, this is how life is”. The fact that I was on 20+ medications at times, was at the GP every week, had bloods weekly, never had all my bloods in range, wasn’t allowed to drive far, and wasn’t allowed to exercise or camp (among a million other disadvantages), just didn’t register in my brain as anything at all abnormal for a twenty-something-year-old. People sometimes told me that I’d end up in hospital. But I always replied that I’d had this illness for over ten years and hadn’t ended up in hospital before so it was fine. I remained “functional”.

But this week exactly a year ago, all this changed. I received a call when I was at work asking me to come in for repeat bloods and an ECG. My blood test results were not good. I decided it would be fine but IMG_2972along I popped. On 22nd September, I saw my usual GP and she admitted me to hospital. I was terrified. I’d never been in hospital overnight before. The following 2 weeks involved a total of 10 days in hospital over 3 admissions. I would be discharged and then readmitted a day later. At one point there were less than 24 hours between being discharged and being readmitted (and I was asleep for about 12 hours of that).

I was desperate for help. The nurses on the ward were desperate to get me help. I cried more than I’ve ever done before. Ever. (Including when Mum died). I spoke to various mental health professionals. I had panic attacks in the middle of the night. I had some incredible nurses who I will never forget. One hugged me at about 3am and snuck me a cup of tea (I was on restricted fluids) until I could breathe again. One switched the room she was covering to make sure she was my nurse.

I had some atrocious nurses and doctors. “Professionals” who treated my like a piece of dirt on the bottom of their shoe. Who made snide remarks. Who made me feel like I was undeserving, like I’d chosen to be there, like I’d be less of an inconvenience if I’d hurry up and die. Some of the mental health professionals weren’t much better.

The following few months are still a blur. I was trying to get myself stable again. I was trying to follow a meal plan and a fluid plan. I wasn’t doing a great job, but I was trying. There were things I was doing which I didn’t think others would realise were me ‘getting around the system’. There were things I was doing which I didn’t realise were anorexia not me.

In January I was admitted again. The staff on the ward remembered me. I was lucky to largely have brilliant staff this time, on both of the wards I was on. Staff who went out of their way to find food I ‘could’ eat. I had an incredible pair of mental health professionals this time, too. I was still terrified. I remember at one point telling the mental health team that the meds the ward were giving me were coating my insides and contaminating me. This wasn’t psychosis – it’s what happens when your body doesn’t have what it needs.

Unfortunately, things continued to deteriorate. I was of the opinion that I had solved all the issues I was having in a very logical way. My GP did try to explain that crawling around my house was not a solution to fainting whenever I stood up, and that actually giving myself some food/fluid might be a better plan. I didn’t agree.IMG_0344

Looking back on it, I could have died. I was so poorly. Apparently I wasn’t making any sense. I was days away from permanent kidney damage. I had to stop going to my GP surgery for bloods twice a week because I wasn’t well enough, and had to go to the mental health place instead. I was admitted straight from there on my last general admission.

I was absolutely terrified. Not of dying, like you might think. But of the things that they were attaching to my drip. Of the fear associated with having things in my body. It didn’t register that I was, yet again, attached to a permanent heart monitor or that, yet again, I was the youngest patient in the room by about 50 years. I was terrified and trapped and the only reason I didn’t pull everything off/out and run home, was because I knew I’d get sectioned. The only time I was even remotely scared for my health was when all of my muscles seized up and I couldn’t move and struggled to talk.

Again, I had a mix of staff. There are some staff who I am forever indebted to. Who showed me pictures of their cat and spoke to me like a human. Staff who came back at the end of their shift to wheel me down to the gift shop to buy puzzle books. An amazing mental health worker who told me that I was “scared but motivated, and that’s the best place to be when going inpatient”. That got me through my first few weeks on the ED unit. There were also some horrendous staff. There are things from all of my general admissions that at some point I need to work through and process, because I still occasionally have nightmares about them.

You would think, given all of this, that I might have realised that friends and family might realise something was up, but I didn’t. I was largely convinced that I looked normal and that I was an excellent secret-keeper. I wasn’t.

A week later I was admitted to an eating disorder unit. It was the hardest 6 months of my life. I’ve gained 75% of my weight again. I’ve cried (a lot!). I’ve panicked. I’ve felt hopeless. I’ve eaten things I hadn’t eaten in years and years. I’ve sat with the most uncomfortable of uncomfortable feelings. I’ve talked. I’ve opened up. I’ve worked so unbelievably hard. I’ve developed a (real!) laugh. I’ve found hope. I’ve found some moments of peace. I’ve found my fight. I’ve found my sparkle. I’ve found my will to live.

My story is messy. It’s hard to read. It’s hard to remember. There’s a lot I don’t remember. It’s a bit of a disaster zone at times.

IMG_1342It’s the story of a girl who was lost. A girl who wasn’t remotely interested in being alive. A girl who thought that life couldn’t change. A girl who thought it was as good as it was going to get. A girl who was destroying herself to cope with a world that felt un-cope-able-with. A girl who didn’t believe in recovery.

But it’s also a story of a girl who didn’t get home until almost 1am last night after a meal out with colleagues in which she laughed for about 4 hours straight. It’s the story of a girl who went camping over summer for the first time in years. It’s the story of a girl who spontaneously decided to go to Whitby one day because she wanted to see the sea. It’s the story of a girl who jumped from rock to rock at Brimham Rocks a few weeks ago. It’s the story of a girl who went out, got tipsy, and danced for hours a few weeks ago. It’s the story of a girl who jumped in her car and drove 4-5 hours to Bristol because she wanted to see her cousin and his family. It’s the story of a girl who is now a sister, a friend, a daughter, a cat-mother, a granddaughter, a niece, a colleague, and a fighter.

It’s the story of a girl who now believes in recovery.

I hope that however hard my story is to read, that it’s one of hope. I hope that it shows others that life doesn’t have to be this way. That there is a chance (however small) that things can get better.

I also hope that my story shows what a difference good professionals can make (and that it prompts those professionals with prejudices about eating disorders to have another think). I wouldn’t be here without some incredible professionals who didn’t give up on me. But more importantly, without the most unbelievably amazing friends and family a girl could ever ask for. I wouldn’t be here right now without some amazing nurses and doctors, some amazingly lovely fellow patients on all of the wards I’ve been on, and my friends and family.

This is just one chapter in my story. There is so much more to come. It’s not always going to be easy. I’m not ‘fixed’. I’m not ‘cured’. I’m still on 10+ medications, under the mental health team, and have regular bloods and weight checks, and have to do things daily to keep myself afloat. But I’m excited for the future, now.

I’ve chosen to own my story and I’m excited to find out what happens next.

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Mother’s Day 2018

I’ve been thinking about writing this blog for a while. A Mother’s Day blog. I’ve written and deleted sentences in my head. I’ve opened and closed Word. I’ve scrolled every single social media site… again, and again… and again. I’ve searched my past blogs for things I’ve written before, wondering if past-me had any words of wisdom past that I could use (she didn’t). It’s now the day before Mother’s Day and I’m yet to put pen to paper (or fingers to keyboard).

The words aren’t coming this year. On the surface of it – Mum’s dead. It’s crap. What more is there to say?

But I think those surface thoughts are just masking the fact that I do have things to say. I have so much to say and I know this because if I didn’t, I wouldn’t have this feeling that I need to blog. The problem is, the words are stuck. They’re joining the feelings in a place so squashed and so buried that I can’t access them.

It’s like when you have a bin, but the weather is grim so you don’t want to go outside and empty it. Instead, you squish down the stuff inside it to get more in so that you can hold off taking it outside for another day or two. But the weather doesn’t pick up for a while, so you keep squishing it down and shoving more in, until the day comes when you do want to empty it but you can’t, because everything’s stuck.

I don’t actually mind Mother’s Day itself.  In some ways, it’s quite nice. Social media is filled with people celebrating their Mum’s, Grandma’s, and honorary Mum’s, and it can be really nice to see that. It’s a welcome break from the sheer number of depressing and frustrating news stories that often occupy my feeds.

I think the thing I find difficult is the expectation that I won’t be okay. That it will (and should) be difficult.

Some of this expectation comes from others. The posts on social media entitled ‘for those of you without Mum’s this Mother’s Day’, or ‘for those of you grieving’, or something like that. The tweets with helpline numbers. The kind and thoughtful messages from friends and family members letting me know that they’re thinking of me (thank you, lovely people!).

All are very well-meaning, but all are a reminder that while others can take their Mum out for a nice lunch, or buy them a box of chocolates, the life-to-death postal service isn’t currently in operation, so I can’t do those things.

Some of the ‘you should feel rubbish’ expectation comes from myself. I almost feel like if I don’t struggle with Mother’s Day, then it means that Mum wasn’t as much of a Mum as she might have been. It’s stupid, because how I feel or don’t feel on Mothering Sunday or any other Sunday of the year has no bearing on what Mum meant to me, how Mum was as a Mum, or anything much else related to our relationship.

Tomorrow is just another day. It’s 24 hours and it will pass just like every other 24 hours does. I won’t be buying any chocolates, sending a card, or going out for any meals. I’ll remember Mum, I’m sure. But I remember Mum every single day, because she was a big part of my life for 21 years, and has continued to be part of my life since she died.

To those of us who do find Mother’s Day difficult, please try and up the self-care a little bit. To those of us who don’t have a Mum we can take out, but aren’t really struggling with the fact it’s Mother’s Day – please remember that it’s okay. It’s okay to feel okay. (It’s okay not to feel okay). To everyone else – celebrate your Mum. Give her a hug. Send her a happy text. Have a lovely Sunday.

Grief Doesn’t Wait For A Person To Die

Whilst walking to an appointment today, I was wondering why the ‘I need my mum [insert tears here]’ feelings had been stirring again over the last few days. Part of it is the state of my life right now. But then I realised that today marks four years since I found out that Mum had a terminal diagnosis.

One day. One conversation. One car journey. My life hasn’t been the same ever since.

‘Diagnosis day’ was a weird one. I was volunteering in Leeds (following a very early morning). Dad text me asking me where I was, which was weird, because I was at uni so he no longer ever needed to know where I was. He drove over, picked me up, and told me while he was driving. I looked out of the window. I didn’t want him to see me cry. We got home and didn’t talk about it. Mum and I took a selfie. I went back to uni later that afternoon.

My grief started that day.

It’s a difficult one to articulate. How can you grieve for a person who’s still there? How can you grieve for your old life, when nothing’s really changed (yet)? The only thing that’s changed is that you’ve received a new piece of information. Everything else is the same.

But you do start grieving. In and amongst all the oh-my-goodness-shock-confusion-trying-to-work-it-all-out, there’s grief. It’s been four years, but it’s something I’ve struggled to come to terms with. That is until I started listening to The Grief Cast podcast lately. Many episodes have people who describe their grief starting while their loved one was still alive. It’s helped me realise that it’s okay. It’s okay that my grief began that day. I’m not alone.

From the moment you find out that your loved one is dying, everything changes. I mean everything. The solid foundation of ‘Mum will always be there’ disappears from beneath your feet. You become more careless with money (can’t take it with you when you’re dead). Assignments feel pointless. Relationships develop new importance. Jobs can feel worthless. Sleep can go out of whack. Food can go a bit wonky. Every time your phone rings, you’re convinced that someone else you love is dying or has died. Your anxiety can skyrocket. You start crying at random objects. Everything changes.

You become a member of a club you never wanted to be in. Grief begins.

You grieve your old carefree life. You wish that the most important thing on your mind was still what to wear for a Friday night out. You begin to miss the person your loved one was, as you watch them fade away in front of your eyes. You watch your family change, too. Morphing into a different family from the one you grew up with, as everyone tries to work out how best to cope. You spend night after night mulling things over, crying, getting angry and bargaining with the unknown. Later on you begin to wish that your loved one would die. You can’t stand seeing them so unwell, and your life is on hold until the point of death. Then you feel guilty and angry at yourself for feeling that way. Grief is well and truly present.

We need to move away from the assumption that we can only grieve once a person is dead. We need to move away from the stereotype that grief is a whole load of crying for a while, then it’s finished and you move on. It’s damaging to have these stereotypes because it makes it so much harder when you do have to experience the reality of grief. It can also cause people to react to our grief in insensitive (and sometimes bizarre) ways.

Grief is ugly. Grief is painful. Grief is messy. Grief is unpredictable. Grief can come in waves. Grief can rear it’s ugly head unexpectedly. Grief doesn’t have a nice, neat, end point. Grief is a life-long experience that affects us from the moment it begins. And that beginning is the moment our life changes. Not necessarily the moment when person dies.

One of the couple of selfies I’ve found that we took that day.
Featured on Huffington Post here.

Grief, Two Years On

I can’t quite believe it’s been two years since Mum died. In some ways, her death feels like it happened yesterday. In many ways, it feels as though it happened a lifetime ago.

Is it getting easier? Maybe.

I’ve always believed that you don’t get over grief, you get along with it. You rub along with it as best you can. Two years on and I still hold this belief. I’m not over grief, I haven’t come through it, but I’m learning to live life alongside it.

I no longer burst into tears when I see a Mum-aged person chomping on a cheese straw. Or when I see a cancer-ridden-body making their way around the supermarket. The grief attacks are becoming further apart. There aren’t as many times that I pick up my phone to text or call Mum, before remembering I can’t.

But that doesn’t mean it’s gone away.

I still cried when I found out that Dad had donated one of her favourite Christmas cookbooks to a charity shop (thankfully I have a wonderful auntie who replaced it within a week – queue more tears!). I still sobbed when I had some significant health challenges recently and wanted nothing more than a Mum hug. I still struggled when faced with a stranger receiving a cancer diagnosis right in front of me.

Mum hasn’t disappeared from my life. She has become part of it.

She’s part of the Christmas cake I baked a few weeks ago. She’s part of the bread I’ve made the last few weeks. She’s part of the birthday food package delivered to my brother. I see her in the crunchy leaves – remembering walks we had and the time we played football one October half term. I hear her steady advice in my ear when I’m faced with horrible life challenges. I feel how proud she is, through the pride I feel for my brothers and all they are achieving.

She’s everywhere.

Life changed when Mum was diagnosed. In some ways, the five years since her original diagnosis have been the worst five years of my life. However, they’ve also been the best five years. I’ve become closer with my brothers. My life has been propelled in a completely different direction – but despite the agonising decisions at times, I firmly believe that it was the right thing. I’ve met some amazing people. I’ve inherited many Mum figures. My outlook on life has changed. I have fallen back in love with art. I’ve been through tears, sobs, sleepless nights, medications, therapy, major health challenges, jobs, houses, flatmates, long phone calls, dog walks, driving tests, exams, panic attacks, laughter… the list goes on.

I’ve learned what’s important. I’ve learned how much I love my family, but that they’re not always right. I’ve learned that family aren’t necessarily those you’re related to. I’ve learned that I am stronger than I ever imagined – however much I don’t believe it at times. I’ve learned that crying is okay. I’ve learned that people can be amazing. I’ve learned that some people are not amazing, and you have to let them go. I’ve learned that it’s okay to let people in. I’ve learned that every emotion is okay, you just have to learn how to manage them. I’ve learned that you have to do a job that makes you happy, even if it doesn’t pay as well as other jobs, or doesn’t live up to other’s expectations. And that’s only the start.

I don’t have anything profound to write to mark these two years. I can’t tell that grieving ever goes away. You probably don’t want to hear yet another ‘it gets better’ platitude, but I can tell you that it becomes cope-able-with. I can tell you that however you feel is absolutely okay. I can tell you that your grief is your own, to cope with as best you know how. As my Mum always said: be kind to yourself

Featured on Huffington Post
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Two Years. Sleep well, Mum. ❤

 

A Huge Thank You

Yesterday was Mum’s birthday.

A year ago, we started fundraising for Martin House Children’s Hospice in Mum’s memory, as she used to work there.

I am delighted to say that a year on we have absolutely smashed the target (it doesn’t all show on Just Giving as some donations went straight to the hospice). The money was originally going on lighting, but due to planning changes we have had a bit of a change of plan. It’s now going towards a music, art, and animation suite which is so perfect.

Mum brought joy to many people’s lives and hopefully this room will bring joy to the lives of many young people on their families. Mum was also a saxophone (foghorn) player and loved music. We would often dance around the kitchen to various CDs and blast them out in the car whilst we sang along.

We want to say a HUGE thank you to everyone who has helped us to reach this target – and there have been a lot of you! It was a fun thing to do, and a lovely way to remember Mum, and now she can live on through this room and all that it will provide.

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.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/you-are-succeeding-by-sur_b_17292692.html

To Those Of You Who’ve Lost All Hope

Sometimes, life does everything within its power to tear us down. It throws everything it’s got at us. It can be exhausting and can leave us lying there on the floor, with all of the energy drained from our bodies.

Everything becomes black – although black doesn’t seem dark enough, or all-encompassing enough to describe the thick fog that smothers everything and makes it so hard to breathe.

Moving becomes hard. Moving hurts, it really hurts. It’s exhausting and it hurts. Reaching to take a sip of a cup of tea can feel as energy-consuming as going on a 10-mile run. So we don’t.

We can’t face going to bed, because going to bed means waking up, and waking up means doing another day. We can’t see any light. We can’t see any future. We have no hope.

I’m not going to sit here and tell you that ‘it gets better’, because it’s probably the last thing you want to hear. It can feel really frustrating when people keep saying that it gets better, because when things are that dark, we can’t see it, and we can’t believe it. It can almost feel like everyone’s just saying it so that they don’t have to talk to us about how crap things are any more. Sometimes we just want to shout ‘when?!’. ‘When is it going to get better? Because it’s been really rubbish for a really long time and I’m tired and I don’t have the strength to fight this anymore’.

When we can no longer carry some hope, we have to let others carry it for us for a little while.

We have to let others carry it for us, until a time when we can pick it back up again.

This can come in the form of colleagues telling us they’re looking forward to us returning to work. It could be a boss reminding us that we have skills and talents. A GP saying ‘see you next week’ or a health care assistant telling us about their weekend. It can be a friend hugging us while we cry and cry, or another friend who spends their Friday evening helping us to write a list of ‘30 reasons to stay alive until Saturday’. It can be a family member inviting us over in a few days time. It can be literally anyone at all who refuses to believe that we might not be able to recover from this.

We need these people to keep believing in us. We need these people who can see us having a future. We need these people who refuse to let us die.

Eventually, in time, we will find glimmers of hope again. We will find cracks of light. We will begin find things to believe in, and our little pile of good things will grow. We might find them in the most unexpected of places – a podcast that speaks to us, the ability to read a page of text, or the joy of being able to taste a cup of tea again. It might take weeks, it might take months, it might even take years, but it will happen.

Until it does happen, until we can carry our own hope again, we have to let others carry it for us.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/to-those-lost-hope_b_16772934.html