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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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

Making a Distress Tolerance Box

Anyone that’s been under a mental health team for a while, is likely to have heard of the term ‘distress tolerance’. The basic idea is that you build up your tolerance to distress, in a healthy way. Often it’s used if you’ve been using maladaptive coping mechanisms (in other words, not coping with things very well). You’re often encouraged to ‘sit with’ crappy feelings, whether it be feeling low, feeling anxious, stressing about food, needing to self harm, feeling at war with your family, or something else.

It can be super helpful to have a distress tolerence box to help with this ‘sitting’ business. I’ve been building mine up a while, so I thought I’d share it in case anyone else feels like setting up their own box.

Often you’re encouraged to try and work on the five senses: something to see, smell, taste, feel, and hear. In my case, when I’m struggling, I can’t deal with taste or strong smells, so I haven’t included those in my box. I also can struggle with noise, so I don’t have that in their either (though I’ll often leave the TV on quietly). Personally, the things that help me most are things to feel, and things to do, so those are the things my box mainly focuses on.

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To begin with, you’re going to need a box. Make sure it’s pretty enough that you’ll want to use it, sturdy enough to not fall apart when you fill it, and big enough to fit stuff in. I got mine from HomeSense and it definitely didn’t break the bank.

Then you can start to fill it and that’s when the fun begins!

Everybody’s box will be individual, because what works for one person won’t necessarily work for another, but here are some ideas of things you could include, and where I got them from.

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To start with, I have things from my friends. Things that remind me that I’m loved. Things that remind me that I’m not the worst person in the world, and that I’m lucky to have some wonderful people in my life. Some of these things are cards, some are letters, some are quotes that people have sent me. I have a seperate box of letters and cards, as well as the ones in my box (plus a few more on my wall – I pen pal with a fair few people!), but the ones that I’ve put in this box are ones that have particular meaning to me. Some include photos, too, which is always lovely. If you don’t have letters and cards from people, you can always ask your friends to send you things to include. It’s a really hard thing to ask, but from experience, people normally love to do it!

As well as letters, cards and things, I have some envelopes which are a little more specific which one of my friends sent me. They are envelopes with ‘open when…’ on the front – they’re a really lovely idea and if you don’t feel able to ask a friend to help you with it, you could always write your own, there are loads of ideas for topics online.

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Next, I have some important reminders. Personally, one of the things I struggle to deal with is scales, so I have a scale disclaimer in my box. I also have a box of ‘press pause’ cards which can be bought from Blurt, because often when I’m struggling everything can feel overwhelming and too fast, and that can help me to break out of that zone, and take a deep breath.

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I also have some other nice little things I can read. A little book of hope which Mum bought me, a little box of happiness, some worry dolls which a friend bought me, a bookmark and pen with some quotes on, and a little bag of happiness which is from the World Mental Health Day that I ran at uni a few times. You can buy them from not on the high street, or you could make one yourself!

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Moving on from the sentimental bits and bobs, I have a lot of different things to touch. I have a handwarmer, because I find temperature can be really grounding. I also have some stretchy toys which I got really cheaply from Hawkins Bazaar’s party bag section, and some balloons with different textures in and a bag of jelly balls which were sent to me by  friend (check her out on instagram at the.recovery.shoebox.project). I also have a couple of puzzles which I can fiddle with – a wooden one and a metal one.

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I find things to do really helpful, so I have quite a few things to do in my box, so that I can pick and choose depending on what mood I’m in. I have some little cross stitches, some colouring books and an origami book (with colouring pencils – the last thing you want to do, when feeling distressed, is to hunt around for some pencils). I also have some ‘make your own bunting’, a ‘paint your own suncatcher’, and some mazes and other paper puzzles, which were all from the.recovery.shoebox.project.

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Finally, I have some things to remind me of my inner child (because if you can’t look after you, sometimes it can be helpful to think about treating yourself the way you would treat your child). Bubbles, glow sticks, play doh, a little googly eyes monster, and a glitter jar (which was also from the.recovery.shoebox.project, but they’re pretty easy to make).

So, that concludes the little tour of my box. Pinterest has loads of ideas for other things you can include. If you don’t feel able to put your own box together, I highly recommed subscribing to Blurt’s Buddy Box – they send little self care packages every month and quite a few of the items in here are from those boxes, and I have other things from them on my noticeboard and walls. Other ideas for things you could include are: nail varnish, face mask, oils/sprays of your favourite scents, photos of loved ones, a list of songs you could listen to, or a USB stick with a playlist on, a teddy or other soft toy, tea bags, chocolate your favourite book… it contain literally anything that you feel could help you deal with feeling crap.

I hope this has been helpful to some people, of course once you’ve made your box, the hardest part is remembering to use it rather than resorting to doing not-so-helpful things! Please feel free to comment with other ideas for things you might include – I’m always up for adding more things to my box, and it might help others, too. If this kind of thing is helpful, please let me know and I’ll have a think about other posts I could do in a similar vein.

Sending warm hugs to everyone struggling at the moment Xxx

Even the darkest night will end and the sun will rise. -Victor Hugo

Is it getting easier, or am I just numb?

There have been a few things that have happened in the past few weeks which would normally trigger off ‘missing Mum’ alarm bells. They range in size, from those that would have knocked me for a few days, to ones which are just a bit tricky.

Things like:

  • Christmas (without Mum)
  • New Year (oh look, you have to survive another year without your Mum)
  • Getting a new phone (my old one was inherited from Mum, but there’s only so many times you can apologise to the person on the other end of the phone for the fact that your alarm is going off (while on the phone) and you can’t switch it off because your phone has frozen… before a new one becomes a bit necessary. I have mitigated it slightly by putting my favourite picture of us as my background, so I’ve still got Mum in my pocket)
  • Feeling ill (my flatmate and I had a discussion last night over which of my meds it might be a good idea to take, whether NHS 111 might be a good plan (nah, they’ll either tell me to go to bed or to A&E, and I don’t feel like going to A&E) and eventually concluded that heat packs, gaviscon and sleeping tablets with a ‘maybe it will be better tomorrow?’ would be a good plan)
  • An exam (who knows how that went as I’m currently a person of no brain and not really well enough to do much at all never mind take an exam, but I couldn’t postpone it again, and the invigilator said that I’ve aged well, so I feel like I won a little bit)
  • Upcoming appointments that I’m not feeling too fab about (Mum’s are good people to text ‘arghhhhhhhhhh’ to).
  • Feeling like generally, with my health, I don’t know whether I’m coming or going, and what to believe (Mum was always fairly blunt, if I walked in looking like I was dying she would tell me)
  • My mental health being a knob (seriously, as a twenty-something year old it’s hard enough to navigate life and try to keep yourself alive without your head attempting to kill you)
  • New year new diet crap (which she would have healthily laughed at and torn apart whereas every time ‘veganuary’ and ‘a researcher has decided that breakfast is bad for you’, I wish I was well enough to join in)

However, despite all these things, the ‘missing Mum’ part of my brain appears to have disappeared (along with the rest of my brain, arguably).

It’s not that Mum doesn’t ever enter my head, but when she does, at the moment, it’s in a much more clinical sense, with all of the emotion removed. It’s not that she never enters conversation, either, because she does (most recently this evening, with the exam invigilator), but when she does, and people say they’re sorry, I normally meet it with a bit of a shrug and an ‘it’s life’, where it might previously have set off cartwheels in my head.

I’m not sure if it is actually getting any easier, or if I’m just numb.

A lot of things, or perhaps everything, is pretty numb right now. It’s not as bad as it might sound – I’d rather be numb than distressed. I often end up in a weird depression-anxiety battle, with depression pulling at me to do nothing, and anxiety screaming at me to do everything; at least when I’m this low the battle pauses because anxiety gives in. So with everything being a bit numbed, it’s hard to know whether grief is lessening, whether it’s becoming the ‘new normal’, or whether depression is just smothering it.

For now I’m just going to keep plodding along, because I’m not really sure what else I can do.

This is to those of you for whom Christmas doesn’t feel like Christmas.

This is to those of you for whom Christmas doesn’t feel like Christmas.

I’m sorry that you are hurting.

I know that the ‘merry’ in ‘merry Christmas’ can feel as though it is mocking you.

When the whole world feels as though it is laughing, smiling, and celebrating, but those are the last things you feel like doing.

Crowded rooms can feel the emptiest.

Hugs can feel like they’re not quite tight enough, not quite long enough; never quite reaching you.

You smile but it doesn’t reach your eyes, and your own laugh seems distant and far away.

The pressure to be perfect can press down on your chest until you can no longer breathe and the number of people around can make your head spin. Occasionally you feel your mask slipping and you have to run to a bathroom and fix it before anybody sees.

Everybody wants to know what you’ve been doing all year and what your future plans are. That can be hard to answer when you’ve spent so much of the year in doctors appointments, hospital visits, and counselling sessions. It’s hard when your test results are medical rather than academic, when so many of your peers are patients or services users not students or colleagues.

It’s okay if your biggest achievement this year is survival. Fighting against the crap in your head, the illness that is determined to infiltrate your body, or the general difficulties that life insists on constantly throwing your way, is huge. It’s hard, brave, and courageous to continue to get up and dressed every day (or most days), when circumstances seem determined to destroy you.

Maybe you’ve lost someone this year. They might have died, or might have just exited your life. Maybe you lost someone last year, or the year before. Time doesn’t heal it, it just gives you longer to attempt to get used to it. Sometimes it makes it harder because the longer they’re gone, the more they’ve missed. Christmas can feel like it’s shining a light on the space that they’ve left behind.

It’s okay to miss them. It’s okay to grieve for them. The fact that they have exited your life doesn’t mean that you have to erase their existence entirely.

Be kind to yourself this Christmas. Let yourself have some time off. It’s absolutely okay to cry if you need to. If you want to laugh, then laugh – nothing in your life cancels out your right to feel happy. Let people in; if you can, and if you want to. Let them hug you. Let them be at the end of the phone. Let them text you. Let them listen. Let them be there.

Maybe you’re feeling just fine. If so, then please: try to be considerate this Christmas. Please understand that not everyone will be happy, not everyone will want to share copious amounts of food, not everyone will be able to manage being around large groups of people.

Christmas is only one day, but it can be incredibly stressful for those of us who don’t feel able to tackle it. Mental illness, physical illness, or other things, can all affect people’s ability to ‘Christmas’, and more often than not, we’re not trying to be difficult, we just can’t do it.

I hope that you all have a peaceful Christmas this year. I hope that it’s as stress-free as possible. I hope that you get a little time with your family or friends and that it’s as enjoyable as it can be.

I’ll leave you with some Winnie the Pooh wisdom:

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
― A.A. Milne