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.

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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.

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

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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.

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.

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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.

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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.

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