What if change isn’t enough?

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It’s been almost 3 months now since I handed in my notice and moved down to Cheltenham because my health was so bad I simply couldn’t go on as I was. I think the last time I updated you on my health was after a bad Sunday at church and since then it’s just been book reviews.  I’ve just been pushing things down and out as much as possible because there’s so much on my mind.

I’m getting married in 74 days – that should be exciting.

I have a job that’s 14 hours a week – compared to what I used to work that’s nothing, that should help.

I’m living with Jack – if that doesn’t make me happy then nothing will.

Here’s the problem…

I’m not happy.

Things aren’t ‘good’, or ‘fine’ or ‘okay’. It’s not even that I’m not happy. I’m simply not okay.

I am so tired. I have written about my fatigue before and it isn’t any better. I had to cancel plans with friends today because I just wasn’t well enough to make it out the house, yet I managed to get myself to McDonald’s to have an unhealthy binge that resulted in me coming back and having a total spiral. But my eyes are tired all the time. My body feels heavy. I wake up tired, I move around tired, and I go to sleep tired. It’s no wonder I haven’t the energy to write on here very often.

You see, my problem is the combination of things that are wrong with. The fatigue. The anxiety. The depression. The eating disorder. The physical pain that comes from slipped disc/sprained ankle/bad knee (that one’s relatively new). I feel like Rasputin in Anastasia (film) sometimes…

“in the dark of the night I was tossing and turning, and the nightmare I had was as bad as can be. It scared me out of my wits. A corpse falling to bits, and I opened my eyes and the nightmare was me.”

That’s what I feel like. I’m so broken and burdened with everything that I despise myself with such a passion – I’m my own nightmare. I had a kid at work tell his mother how he could ‘see all my fat’ the other day… I mean, I don’t actually have a uniform at work yet and I’ve worked hard and had to buy new clothes that I can’t afford in able to be able to dress according to their dress code, and I’ve really made an effort to look smart despite the fact that half my clothes are too big and half are too small (nothing ever seems to fit my size/shape). And this kid just stood their pointing, telling me he could see all my fat, and when his mum called him out on it he said, ‘yeah but mum, seriously, just look at her’. That wasn’t great for my confidence I have to say and no amount of smart comebacks that you can tell me I should think or say will change the fact that he was right. I am fat. I hate my body. I hate that I can’t bend down properly because it hurts too much in various places. I hate that I can’t walk very far or run anymore. There is not a single part of my body that I like and I didn’t need some kid to point that out.

My eating is really bad. It’s hard to have a binge eating disorder because I don’t think they’re very well understood. Anorexia gets a lot of press and I’m not undermining it, but binge eating isn’t life threatening and so is often ignored and certainly doesn’t receive the attention it needs to. Long term, it’ll cause a lot of problems but in the short term, it’s not doing me any immediate harm. Except I can’t stop eating. And then, when I’m done, I go home and I look at my body and I want to cut most of it off… my arms, my legs, my big fat tummy that a kid was so shocked by he pointed it out… I just want my body to go away.

Then the anxiety starts. I caused this, this is all I deserve. I tried to write in my journal for the first time since moving to Cheltenham tonight, and all it has is a big hole through the three pages I wrote because it all got too stressful. I feel sick all the time.

And where’s my faith? That thing that I’m supposed to cling to? I don’t even know if I have that anymore. My faith in the church has been gradually diminished over the years – from my university church that didn’t notice when I stopped attending for three months because of hand, foot and mouth disease/scarlet fever at the same time, to my current one where apart from one couple who regularly checks in on me and Jack, not a single person has tried to make me feel a part of their community… I was lying here earlier tonight, Jack’s away at work, and I realised that despite attending this church for 3 months, there was not a single person I could call to come round to help me. My belief in God is dwindling as well. And that’s scary for me. He’s always been the rock I hold onto, but the longer I feel like this the less I can believe that he gives a toss.

Then, of course, there’s the constant depression. The sadness no one can explain. The black cloud I live under that also grows inside me, building in my chest until I can’t breathe. Or maybe I just don’t want to take my next breath. I don’t even know the difference anymore.

I grip onto my love for Jack like it’s the only thing keeping me afloat. I picture his face if I went through with the things in my head. From the minute he’s gone to the minute he gets back I am scared and alone but I hold onto the fact that he loves me and everything that he is doing to support me. He is working 2 jobs. We are living on a very tight budget. He is planning a wedding. He manages the household chores, the cooking, the cleaning, the shopping, the food preparation, the washing… without him I’d be living in a pit. He’s my rock and I couldn’t do this without him.

I just wish I could make it easier for him, but how can I when I can’t even make it easier for myself?

I literally transformed my life style… left my job, the place I lived and have changed everything about the way I was living my life.

But…

What if the changes I’ve made aren’t enough? What do I do then?

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Sundays as an Anxious Christian

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I think that our churches are failing the masses when it comes to mental health. I have been a Christian all my life. I am more comfortable in a church service than I am in the cinema sometimes – at least I know the etiquette, and the message I’m getting, whether I’m in church in South Africa, New Zealand or England. It’s a place where I’m supposed to feel safe and where, when things are tough, I’m supposed to find love and support.

There’s nothing harder than changing churches, because those places become your home. My last true home was in Wiltshire, where I worked as the Children’s and Youth Worker at a rural church. For over 2 years I attended that church, for some of that I worked for it, and no matter what I was going through in my life, that church was there to support me and lift me up. Considering that I worked and attended there when my diagnosis of depression and anxiety took place, that church cared for me and loved me like none other. That said, it was only really leadership that knew what was going on, as I was an employee, so maybe that’s something to do with it. Either way, leaving it for Coventry was one of the hardest things I had to do.

And today I attended my fiance’s church for the first time as a regular – I’ve been before as a visitor, but all of a sudden, this is my church, the place I’m supposed to find spiritual rest.

Being an anxious christian is hard – and that’s something I think I will save for another blog post. Suffice to say, if one more person tells me ‘do not be anxious about anything’ I might well hit them round the head with my bible (not literally… I hope!). Starting a new church as an anxious christian takes a lot of courage. Picture this:

Perhaps she held onto his hand a little too tight, her nails digging into his flesh as she clung to him. The physical closeness of his body did nothing to soothe the racing of her heart, and the sweat starting to form at her forehead. It was too late now to back out… the welcomers had said something… she didn’t quite hear what so she tilted her head towards Jack and half smiled on one side of her mouth. Was that rude? Were they still talking to her or to the person behind? Just keep putting one foot in front of the other, she thought, as her breathing got quicker, her chest tighter. Ah, more welcomers, these know Jack and say hello to him as he pauses, despite the little tug she gives his arm. Her legs are shaking, she’s tired and frightened and she needs to find a seat that will become her haven for the next hour and half of her day. She lifts her head slightly to peruse the layout, the rows and rows of chairs already filled with bodies of people she doesn’t know, the chatter and laughter of children burning on her ears that only beg for peace and quiet. Jack turns to look at her and she says something along the lines of ‘we need to find a seat, now’. She doesn’t quite know what she said because her heart is beating so loud in her ears that she can’t even hear her own words, let alone those of the welcomers who continue chatting. Jack dithers on choosing a seat, she tells him to pick one quickly, and when he does she sits on it in a panic – has anyone seen how nervous she is? What if there’s communion? More people surround her as she sits on the seat that has become her sanctuary, talking to her, talking to Jack. She smiles and nods, trying to form words but knowing it doesn’t really matter because they’re all excited to catch up with each other anyway. There’s no order or service, no indication of the structure that the service is going to follow, no list of songs that she can look through to see if she knows any. The anxiety is in full control now – she doesn’t want to talk to anyone, she can hardly breathe, and she sits there staring fixedly at the floor. It’s a relief when the music starts, because she knows how to do this bit. 

It’s a huge amount of anxiety all wrapped up in something familiar. New faces, new songs, no tangible structure, not knowing how this church does things. It’s a hard thing to do. Bear with me if you will, as I continue:

The service has ended, the safe familiarity is complete and the anxiety she felt at the start goes into overdrive. Jack is out at children’s work, and no one came and sat with her during the service. So now she’s alone. She recognises the person behind her, but her back is stiff and turning around is an issue. She sits, anxiously tied to the spot that was chosen at the beginning of the service. Around her people reunite, chat about their week… start packing up the chairs. Vaguely familiar faces pass to and fro in her peripheral vision, but she’s so wound up by this point that she can’t even force the edges of her lips to lift into a smile. She sits hunched away from the aisle, wishing someone would come and talk to her because if they do that, then she has an ally against the anxiety, someone who she can borrow some strength from to fight it. But no one comes. And Jack is late. She waits for what seems like an eternity, grabs her things, and goes outside to wait in the car. 

Anxiety is a disease that attacks you at your weakest. If it’s that hard for a practised, seasoned christian, I can’t imagine how anyone without faith walks through the doors of a church. Anxiety is a monster that is trying to take the safety of Christianity away from me. I question my faith (a post for another time), I am scared of churches and gatherings, and I feel totally alone in it.

And so our churches begin to fail those with mental health issues. They welcome the newcomer, but the vaguely familiar face is left on their own. They share their stories of faith and hope, forgetting that they are the hope of Christ to those who are struggling to get by. They eat biscuits and drink coffee and talk to each other…even the familiar faces walk past without so much as a glace, and the anxiety wins.

Sundays as a christian are tough in familiar settings. They’re tougher on your own, wondering if anyone will notice the devil on your back.

Moving Day

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So, I know I’ve just started writing my blog daily, however, I am moving house tomorrow! And we don’t have wifi set up yet. So I might got get the chance to for a little while.

Tomorrow I am leaving Coventry, where I currently live, and moving in with my fiance Jack in a flat that we have rented together! It’s the first time we’ve lived together, and the first time either of us have rented an unfurnished apartment. So we’ve already gone bed shopping and bought a brand new bed for ourselves, but we really have a mish-mash of furniture between us and nothing that useful (like a sofa or chairs) so it’s going to be a bit of an adventure that we’re happy to take together, of course.

As you can imagine, moving with anxiety and fatigue (and depression) is a bit of an issue. I had melt down in Wilkos today because I couldn’t find boxes… I literally walked out the store, leaving Jack holding what we had already picked up to buy, and had to sit on a bench to settle down. It made me very stressed and anxious. Jack’s been amazing – he’s done a lot of the cleaning and packing all day today and the flat is looking ready to leave. I just feel really out of control, and really tired and really stressed.

So… bring on moving day!

“Maybe you should go to bed earlier”

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The last time I went to my doctor, before I had the appointment that had me signed off work, I told them this:

“I don’t think I’m really suicidal. Like, I don’t think I actually want to die. But I’m so incredibly tired, exhausted, just tired all the time, that it makes me want to kill myself, because I don’t understand how I am supposed to be alive and be this depth of tired all the time.”

My Head of Department and mentor at the school I was working at understood that I was ill, but she kept telling that ‘everyone is tired‘ and ‘welcome to your first year of teaching’. And don’t get me wrong, I appreciate that everyone gets tired, and of course anyone on any teaching training programme is tired beyond imagining. The problem is, I’m tired beyond imagining when I’m not doing anything. Adding work on top of that, especially the intensity and number of hours that teaching requires, and maybe I can start to see where things started going wrong.

My constant tiredness is still being explored medically, with an appointment at a rheumatology clinic in the near future being the next step. I’ve had blood test after blood test, examination after appointment and several different doctors, and no one can tell me what’s wrong with me. The only thing that keeps being repeated is this idea of ‘chronic fatigue’, but everyone is so reluctant to diagnose it – it’s next to impossible to pin it down at the moment. But something is wrong with me, and until I have a better name for it, chronic fatigue is all I have.

Let me tell you a bit about what that’s like.

I’m tired. All the time. I can sleep for 6 hours, 8 hours, 10 hours, I can take naps or not take them, I can be out in the fresh air or resting inside all day, and there is not a single moment where I am not TIRED. It’s just constant, relentless tiredness. It often starts in my legs, where lifting one leg up and putting it in front of the other one is a really conscious effort because they’re so heavy. Like when you wake up from deep sleep and you have mild sleep paralysis and they feel heavy to lift. My legs feel like that during the day. I feel weak, so weak that I can’t even lift my bag to take it home, or struggle to open the door. My commute to school was 20 minutes – sometimes I’d be so tired I’d have to take a break after 10 to make sure I was safe to drive. My eyes will feel like I’m having to force them open – whereas we normally use our eye muscles to blink, I feel like I’m having to actively engage them to keep them open. My head gets foggy, I can’t form proper sentences.

Then comes the pain. Just pain all over my body. My legs aren’t just heavy, they hurt. My back aches, like a serious muscle ache. Now, I do have a historically bad back with ongoing problems and a slipped disc, but this isn’t always to do with that. My whole body aches, like a recovering twisted ankle. It hurts so much. Sometimes, my nerve endings get so sensitive I have to strip all my clothes off and find a way to lie that aggravates the least number of nerves and just lie there still. Those are the times where Jack can’t even snuggle me to make me feel better because I hurt too much, and those are the times where the depression really starts to kick in because even Jack, with all his sensitivity and gentleness, cannot help me.

Sometimes I feel like this by 10am. Sometimes I go a day or two without it getting that bad. But I repeat, I am tired all the time. There is never a waking or sleeping moment where I’m not. Even in my dreams now, whatever character I am is tired, too tired to go on.

It feels like it’s never going to end. I can’t remember a time I wasn’t like this – I’ve been told that I wasn’t, but I can’t remember it.

Being tired like this creates a vicious cycle – several in fact. Tiredness feeds anxiety and depression, and they in turn feed the tiredness. There are often several days in a row where I can’t even leave the house, and I eat because I’m a comfort eater and I gain weight because I can’t exercise because I’m too tired to leave the house. When I was working, I ate drive through McDonald’s at home far too much because I wasn’t up for cooking. This tiredness, this depth of exhaustion, impacts every waking and sleeping moment of my life and never in a good way.

And trust me when I tell you I’ve tried all the advice. I’ve tried eating well. I’ve tried setting a regular schedule. I’ve tried more sleep, less sleep. I’ve tried naps and resting and specific concoctions of vitamins and minerals that are supposed to help and nothing does. Nothing helps this tiredness.

It is endless. And I feel like it is killing me.

Oh Brave Warrior

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Today has been a heavy day for reasons that aren’t mine to share. So I don’t have much to say. Instead, I thought I’d share with you the feature image of this post, which I will also insert below so you don’t have to do the constantly scrolling thing!

My fiance Jack drew this for me last year when things were really bad. He tried to capture the demons that afflict me, and the battle I face every day to combat them. It was the first time I had ever seen my fight with depression through someone else’s eyes and I always return to it when things are really bad. This is the first time I’ve shared it in a public place.

Depression breaks down your soul until you don’t feel like a fighter anymore. Until you’re tired, so tired, and the only thing you look forwards to is the end. I always undermine how I feel because ‘it’s not as bad as someone elses’ experience’ or ‘I get to work’ or ‘I wake up in the morning’. But what I fight is real, as tangible as the demons Jack painted. And to see myself as a warrior…

Well, it helps me to fight another day.

(find and add my gorgeous artist on instagram @narrativejack)

https://www.instagram.com/narrativejack/

“You can’t cure depression with ice cream”

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This post is inspired by and its quotes (including the title) are taken from Bill Bernat’s Ted Talk “How to connect with depressed friends” available here:

 

I have a friend who for several years dated a man with diabetes. I may be slightly biased when I say this, but she was phenomenal. She went away and researched the condition immediately. She learned more about it than I even thought possible. Over the course of a couple of months she became an expert, supporting her partner in managing his condition, keeping the ‘right’ foods and supplies in the house and helping him as he pursued different routes to manage his condition better. She went from knowing nothing, to being the most caring, supportive and knowledgeable partner this man could have had, because she was able to understand the condition and its treatments.

I bring this up, because I thought of it today when I was looking for an image for my blog. How many pictures have you seen out there like the feature image used in this post that are needed to explain diabetes? I did a quick google search, and most of the images that came up were practical ways to combat the disease (the implements used to measure blood sugar and the needles or pumps used to deliver insulin). Depression needs more because there is no simple way to understand it.

As much as I relate to the feature image of this post and find the artwork beautiful and pertinent, I think that such pictures can sometimes cause anxiety in the healthy, especially those who have no experience with depression except for the fact that their friend has just told them that they are suffering. Depression is so individualised that there is no way to truly understand it. There are hundreds of different treatments, and they might work for 100 people, but there are another 100 people out there that they will do nothing for whatsoever. So we turn to art work and poetry and creativity to express our illness, which I think can sometimes be isolating for those who don’t suffer. I’m not criticising, I’m just reflecting (and up pops the anxiety!) because I am one of those people who finds this type of artwork helpful in expressing how I am feeling and I appreciate those who create it.

Bernat’s talk offers some chance for reflection on my own depression, some ideas for those who might struggle to connect with sufferers of depression and some comedy – all wrapped up in 13 neat minutes. His definition of depression – “The absence of the ability to ‘just get over it’ is depression” – is especially heart wrenching, because if there is something I want more than anything in the world, it is simply to get over this.

One of the things that really stood out to me was this advice to friends of the depressed:

“don’t take a negative response personally”

One of the things that I love about Jack is that when I’m having a bad day, he’ll suggest a bunch of stuff that might make me feel better, then he’ll take his cue from my response. There are some days where a bath seems possible, and some days where it doesn’t. There are some days where eating chocolate seems okay, and some days where it doesn’t. What I love is that Jack respects my limits no matter how I express them (and sometimes I come across as angry/defensive). He still looks after me though. If I refuse food/drink, for example, he’ll hug me for a bit so I feel safe, then he’ll emerge later with some food. Something that I need, sustenance that he knows will help but that I can’t even face thinking about. It isn’t until it’s in front of me that I know that it’s what I need. Even then, sometimes I can’t eat it all, and he never gets angry at that.

Alternatively, he knows that sometimes I’ve said no because I can’t manage all the steps – going upstairs, running a bath, getting into it, getting out of it, getting changed… and he’ll take control and take some of those steps out of my hand. I’ll go upstairs and find a bath already running, with towels laid out ready for the end of it, and sometimes, if we need to go out, I go downstairs afterwards and he’ll have laid out my clothes for me so I don’t have to make too many choices at one time. Things like that help to make the bad days bearable. But he never, ever, gets angry at me if I can’t do something. He might get upset and frustrated at the situation, or angry that I’m suffering, but he holds no anger towards me. I hope that everyone has someone in their lives like that.

One thing that I think is really not understood by the masses is this:

“we feel it (depression) in our bodies. It’s a physical thing for us.”

Depression is about so much than just feeling sad. I get a really bad pain in my side on really bad days. It’s like a muscle pain, but deeper, almost like I’m being stabbed constantly. It’s like when you’ve laid on one side too long and then it won’t stretch out… I don’t really know how to describe it. I get tooth ache or ear ache which will disappear the next day. My depression doesn’t just control my mind, it takes over my body too, making putting one foot in front of the other too painful. My limbs get heavy, to the extent that I have to crawl up the stairs because I can’t walk. It’s a painful experience and when you feel like you’re losing yourself to this illness already mentally, it is just a cruel trick of fate that it impacts you so severely physically as well. It was reassuring to hear someone else confirm that this is a part of the illness, because I feel so broken so constantly, I feel like it must just be me.

Today is a bed day for me. I’ll probably mostly just binge watch Criminal Minds and move only when necessary. My brain is too tired to read, too active to sleep. This is why I was signed off work, to give me the space to rest like this, yet I find it so hard to do – to rest and ‘recover’. Because unlike when I fell down the stairs at my friend’s flat and sprained my Achilles tendon 2 weeks ago, I can’t see or feel any difference to my ‘injury’, no matter how much rest I get. I just feel like I’m sinking, trudging my way through a life that doesn’t feel worth living, exhausted and sad all the time.

Depression isn’t a cloud hanging over me, or a veil colouring my sight. Depression is deeply rooted inside me. And I’m not sure how to get it out.

A Change of Pace

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To date, this has been primarily a book-review blog with the occasional nod to its other namesake (exercise), mostly in a ‘I might do it sometime’ way, with one post about anxiety. But I think it’s time to take this blog in another direction. Don’t worry, I’ll still criticise and praise, moan about and celebrate every book that I read. But it’s time that I was more honest with myself, and as a result, I want to use this blog to support what I think is going to be a long road to recovery.

I got a shock last week when I went to the doctor for some help, and the help they gave was to sign me off work for a month, citing ‘stress and depression’ as the main causes. I knew things had been bad – I hadn’t read a whole book in a while, and my health has been constantly bad since October. But I’ve spent a long time blaming the colds, viruses and tonsillitis for the growing exhaustion, anxiety and depression that I’ve been feeling. Those who know me will know that I was diagnosed with anxiety and depression back in 2016, and that I’ve been dealing with it mostly on my own ever since (with support from close friends and my wonderful fiance Jack). Added to the top of that is this suggestion of Chronic Fatigue – the chasing down of a diagnosis for what is actually wrong with me is still ongoing as no one seems to want to pin it down and make it official. Anyway, I’ll leave that for another day. What’s been getting consistently worse is the anxiety, even about leaving bed some mornings. The dark thoughts and depression – and dare I admit it, the suicidal rushes that come and go. This deep and bone weary exhaustion that never seems to go away and is eating me from the inside out. The pain I feel in my body all the time – sometimes so sensitive that even Jack isn’t allowed to touch me. These are the things that aren’t stopping and that I need to really address. I need to get myself better. This was brought home to me on a recent visit from my best friend Aislinn, who reminded me that I haven’t always been like this. That at university I was lively and happy and full of life. The girl she described doesn’t exist anymore, and I want her back.

So, with the doctor’s note as a wake up call, I’ve done the only thing I have left to do – I’ve given up. I have resigned from Teach First and my job at the school. I am relocating to Cheltenham to live with Jack earlier than expected. I am exhausted, run down, and about done with life. Now, this isn’t a defeatist ‘giving up’, don’t worry. What I’m doing is something I haven’t done for a very long time. I’m about to put myself first. Instead of trying to work 60 hour weeks in the few hours a day that I actually feel capable, instead of forcing myself out to work everyday and ignoring the warning signs, instead of prioritising everyone else and putting myself last, I’m taking stock and I’m listening to my body, physically, emotionally and spiritually. Enabled by the pure love and dedication of my other half, I am stopping. I am resting. On days where I can’t get out of bed, I’m not going to beat myself up. I’m going to create a weekly timetable of activites, based around research into my conditions. I’m going to eat better. I’m going to go out in the air and just enjoy it, whenever I can. I’m going to soak myself in the unconditional love of Jack, my fiance, who is working extremely hard to make this happen, and giving up a lot to help me.

I want to use this blog to be honest about what is going on. I want to share my journey with you – the highs and lows, the struggles and the victories, however small. I want to be able to look at this website this time next year and see that the bleak despair that colours my every moment is at least lightening a little bit. I want to be accountable to you, my friends and the strangers who might read this. So it’s time to be a little honest.

I hate my body
I hate my health
I hate being in pain all the time
I hate wanting to die
I hate panic attacks
I hate feeling so incredibly alone all the time
I hate my personality
I hate feeling like a burden all the time

I want to run again
I want to write – fiction, poetry, this blog
I want to smile for real
I want to know what’s wrong with me
I want to find my faith in God again
I want to feel real joy

So there it is… on paper (well, on the screen), and out there for real – the things I feel like I can’t stand for another day, and the things that I don’t feel I experience any more – at all. It’s not going to be easy, I know that. I want to commit to writing here every day, but at the moment I can’t even promise that. But what I can promise is that I am going to start working at making myself better. And maybe, just maybe, it might work this time.