Living with Misophonia

misophonia

(mis-ō-fō’nē-ă), Dislike of sound.
See also: decreased sound tolerance, phonophobia, hyperacusis.

It’s dinnertime… we usually eat our meals, when it is just my husband and I, at the coffee table, sat on the sofa. It’s not that we don’t have a dining table and it’s not that we are lazy but, for me, the sofa is the most comfortable place in the house to eat. Why? Because in front of our sofa and coffee table, is the TV.

When eating, the TV provides two sources of comfort for me. Firstly, it is a distraction and secondly, it is a noise. And most importantly, it is a noise that masks the sound of my husband eating his dinner.

Now… this is not specific to just my husband. It also applies to my family, to my parents, my work colleagues, my friends and to strangers. It could be the person I love most in the entire world, who I choose to spend my days and nights with for eternity, or it could be the person behind me on the bus sucking on a sweet or eating a bag of crisps. The reaction, in my mind, is the same.

I need to get away. As far as possible and as fast as possible. Where anxiety in general will often have me ‘freezing’ in one spot, Misophonia will trigger the other fear response each and every time: flight. With a little bit of fight, thrown in for good measure.

Because what I feel is akin to rage. I am a pretty calm person generally, I have never been in a physical fight, I am fairly rational, I’d much rather talk things out that get hot-headed and fight it out with words. I don’t even really like graphic scenes in films or on TV which show people being overtly aggressive – but if I hear someone crunching, chewing, swallowing, nibbling, masticating… something happens within me and if I cannot get away or mask that noise then my instinct is to get massively angry. I have never lashed out at anyone and I hate the thought that I one day might, but all my panic sensors are up. I get hot, my breathing quickens, I cannot think straight, my words, along with my own appetite disappears and I need to get out of that situation as fast as I possibly can.

It is not simply the dislike of the noise of other people eating, it is the fear and panic that surrounds it. It is not a ‘oh, thats not very nice…’ reaction, it is a ‘I need you to stop or I will be in a heightened state of panic for the rest of the day’, kind of affair. It is frustrating, isolating, worrying and also not anyone’s fault. I know that this intense visceral reaction is something within me and that people make noise when they eat. I am intensely aware that I make noise when I eat.

I’m no expert in the causes, only the effect. Sometimes I wonder if it is closely linked to my own anxieties around food, other times I figure it must be one of the downsides of being ‘too sensitive’. I am also highly sensitive to smells, other noises (such as breathing), the energy of the people around me and in order to really feel something, I must touch it – this allows me to find its place within my mind, see its colour, feel what emotions are attached to it, and so on. I am very sensitive and attuned to everything around me, so in some ways it feels in a way, logical, that sound is one of those things.

However, I am also aware that it is very much not logical, how can it be? Just because I can hear someone else eating, does not mean any harm is going to come to me, so why does it evoke such a strong ‘fight or flight’ reaction? I once broke up with a guy over the way he ate a burger – sat opposite him, in a busy and garishly lit fast food restaurant, all I could focus on were his lips, and not in a good way. I watched how he chewed, how he spoke still with food in his mouth, I could hear the noise of him eating and I knew I could not be in a relationship with him. The following day, those images and sounds playing over and over in my mind, I finished with him. Because it is not only in the moment, these things will lodge themselves somewhere within my mind and they will play on a loop, over and over again, gaining in intensity each time. I can still vividly recall that moment in Burger King 17 years later, but I have no recollection at all of what else we did that day. I hate having hiccups, but I hate it even more if someone else has them, because that noise in my head makes me envisage them being sick – and I was a carer for a long time, I can deal with blood, faeces, urine… in fact anything the human body can throw at me, but vomit? That is a big, big no. I once spent all day cooking a four-course Christmas dinner, only to not be able to eat any of it because I had become so focused on how much food once of our guests had helped himself too, and how he was just forking it into his mouth, and talking at the same time. I wanted to stand up and scream and scream until everyone left – but, y’know, that would not have been a very good idea…

I think it is also really hard to deal with because no-one likes to be told to eat, or breathe, quieter. And why (and how) would they?! I know I am asking a lot when I ask my husband to take his bag of crisps into the next room to eat them, or to make sure there is something else going on to drown out the noise when he’s dunking his biscuits into his tea. I will tell him time, and time, and time again it is not him, because it is absolutely not, but that doesn’t make the request for silence any easier.


Some really good and useful information can be found here, whether you have this, or know someone that does. I didn’t even know the name of it until a couple of years ago, sometimes just having that and knowing that it is a recognised ‘thing’ can help work wonders.

Happy Holidays… but why its ok if they’re not.

Autumn is a magical time of year. Everything turns golden, the heating comes on. People don’t look at you strangely for wearing big chunky boots with your pretty dresses… the best mornings are full of blue sky and steam that rises from inside your lungs when you breathe. You get to smell woodsmoke in the air, cook stews and casseroles to come home to. Leaves crunch under your feet or the mud squishes underneath your wellington boots as you meander through woodlands that smell of damp and earth and allow you to feel completely grounded and at one with nature.

It is also the prelude to December… I was born a week before Christmas and I normally look forward to that special week – full of family and friends, twinkling lights, good music (Smith & Burrows’s Christmas album will always be a favourite), amazing food and of course the presents, although I’ve always been much more of a giver in that respect. It’s wonderful…

Until it isn’t.

Until the tiredness snakes its way into your bones, or the kitchen gets too hot whilst you are cooking what feels like your eleventh thousand Christmas dinner. Your bank account is looking sorry for itself, you’ve forgotten to buy your husbands aunties cat a Christmas present (true story), you need to write a heap of cards for the neighbours or people at work, you need to have dinner with your extended family and you know that the noise of eating, the amount of food, the anxiety around getting it ‘just right’ and the feeling of being too full are all triggers to your own issues with food. Maybe you count on work as a distraction and routine to keep you sane and the thought of an enforced holiday scares you more than you would like to admit. Perhaps you are breaking bread with people that don’t understand your sexuality, maybe you would love to be spending your day with a loved one but can’t because you need to spend it with family who don’t understand. There is alcohol, so – much – alcohol, and that can be incredibly hard for so many reasons. It’s not an easy time. Last year I wrote on another platform about how we can never fully understand how hard Christmas can be for each other and this year I’m feeling the truth of that even more so. It could be the first Christmas without someone, or the last Christmas we know we’ll have someone with us. And it’s merry and jolly and bright because it’s Christmas… but in reality, it’s not at all jolly and bright… it’s hard, and it’s a struggle and that is ok.

It’s ok because it is ok not to be ok. It’s ok to find all of this too much – all of this preparation and buying stuff and thinking about food and making arrangements with people you haven’t spoken to for the last 11 months. It’s alright to go to a quiet place and just sit and do nothing, or to cry, or to scream into a pillow. It’s healthy to get the lead on the dog and whisk him out of the door faster than his paws can touch the ground because you just need to get out and away and breathe the fresh, cool air into your lungs for 10 minutes, by yourself, for yourself.

These few weeks are stressful. They are stressful for people who seem to have everything together and they are stressful for people that let us all know about it when they don’t. Most of us still have to do the everyday stuff – going to work, keeping ourselves healthy, care giving, paying bills, looking after kids – and then we have this big day looming on the horizon which everything has to be perfect for, which we need to be perfect for.

But we don’t. Not really.

Because it’s a day.

Just a day.

Take it hour by hour, remember to breathe. Meditate, go for a walk, sleep. Look after yourself and be considerate to those around you.

The season of goodwill to all men.

That includes yourself

❤️
Main image credit: Annie Spratt on Unsplash

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How to Help a Child With Anxiety

I was an anxious child. I think I had experienced little flashes of it throughout all of my childhood, but it was when I moved up to senior school that anxiety really got its teeth into me.

I was quiet, and sensitive – and sensitivity hasn’t always been seen in the most positive of lights. I would feel overwhelmed by noisy and crowded spaces, I’d like to plan ahead and I was – and still am  – an overthinker and a perfectionist. We also lived in a church building, which in many aspects was wonderful, but it did make me ‘different’ amongst my peers and it did pose its own challenges with regards to the overthinking; I’d imagine the building being set alight whilst we were sleeping or someone getting in to the building during the day and hiding until my Dad did his nightly checks.

You’d think then, that when a friend asked me for advice last week regarding his daughter who is experiencing severe anxiety after moving up to secondary school, I’d be a fountain of experience and knowledge and be able to give real, practical advice, having lived through it myself… but instead, I kind of drew a bit of a blank. I empathised of course, I gave some small words of advice about what could help anyone with anxiety, but it was only when I went away and thought about it and talked to my friend who works in mental health about it that I could really come up with some actual, relevant advice.

I think that this is for two reasons, firstly, I experienced all of this anxiety in the mid-nineties. We simply did not have the knowledge or the resources to deal with children’s mental health at this point in time. My experience was very much, go to school and deal with it for 6 hours, 5 days a week. My parents tried their best to help me, but without the resources and the education there for them to access, it was at times both frustrating and agonising. Secondly, I don’t remember whole years of this time period, or rather, I remember a few standout moments from when I was 10 or 11 to when I left school at 16, the rest is very blurry and jumbled up. I was bullied throughout my time at secondary school and this has had a long-lasting effect, even to this day. Just because the memories aren’t there, doesn’t mean the feelings within my body, my reactions to certain things and the way I have learnt to process this – what I now can recognise as complex trauma –  aren’t.

So, what would have helped me back then? What advice did I go back to my friend with and if you have an anxious child – whether there is bullying involved, or not – how can you help them?

Acknowledge the Anxiety

For so many years people seemed to believe that mental health issues would magically disappear if they weren’t talked about. That somehow, if we didn’t acknowledge them and the damage that they cause, that they would just go away. That talking about them was somehow indulgent and self-absorbed. I can assure you, none of this is true.

What acknowledging anxiety does, is rather wonderful, for it helps to take away some of its power. Anxiety thrives on the unknown, it feeds off of ruminating thoughts. If, as someone with anxiety, you are able to sit down with someone you trust and talk about what is worrying you then that is half the battle won, for it gets it out.

Of course, talking can be a pretty big thing in itself when anxiety has dug its claws in. How do we make it make sense? We know that it is rarely rational. That so many people will, and perhaps have, told us ‘not to be so silly’, or have brushed it off, or even laughed at us. The best thing that you can do with someone with anxiety, is just listen. Don’t judge, don’t try and fix it, just listen. Very often, within that safe space of being able to talk about it and have these words heard, we can come to our own conclusions about how to deal with what is happening, or sometimes just giving our thoughts the space to come out means we can hear them logically when they aren’t all clamouring over themselves to be heard. Philippa Perry wrote a wonderful book, which was published earlier this year entitled ‘The Book You Wish Your Parents Had Read (And Your Children Will Be Glad You Did)’ in it, she talks about how validation is so, so important. That just acknowledging what a child feels can (rather literally) work magic. Instead of brushing what a child is telling you off, a different response could be ‘I understand how that could be upsetting, what do you think would help?’ this then opens up the subject for discussion, whilst also keeping the child in control of their feelings and emotions which will, in turn, enable them to better process these ‘difficult’ feelings as they encounter them again throughout growing up and into adulthood.

Observe How the Anxiety Presents Itself

This will be different from person to person and sometimes it will manifest in different ways for the same person. Anxiety can make you feel so restless that you can’t sit still, so fearful that the only way you feel you can deal with it is to be angry, or so numb and scared that it mutes you. Dealing with difficult emotions can cause some people to overeat, and it can cause some people to not eat at all (the lump in your throat? that knot in your stomach? These are very real feelings.) Anxiety can be as much physical as it is a mental, illness.

Image credit: Blossomedcherry.com

Anxiety may keep itself at bay all weekend and only come to the surface on a Sunday night. Or, it may be more prevalent on a Saturday when the week has come to an end and our thoughts start to ruminate. Anxiety sends us into ‘fight or flight’ – giving us an adrenaline rush which can make us appear sometimes manic, fidgety or forgetful. It’s also exhausting, sometimes the safest and most desirable option is to just go to sleep and black it all out.

Anxiety isn’t always a frowning, worried look. It could be any behaviour that seems out of character or alarming, especially before a big event. However, for some (like me) just the school environment with its noise, atmosphere and constant busyness could cause anxiety.

There are some great meditations out there for children (check out Insight Timer, completely free and with a huge library of mediations, music and even stories) but sometimes sitting still could be impossible. If there is restlessness or a huge adrenaline rush – encourage exercise or get outside, go for a run or go into the woods and jump about; scream, cry, pretend to be wild animals! Getting the cortisol out, is good and will help someone with anxiety rebalance themselves and be able to gain some control over their emotions in a calmer, more manageable way.

Encourage the Flow of Words

I have never been a big talker, even in therapy, I have felt at times that I have talked ‘too much’ after talking for an hour. But still, I love words, I love reading and I love creating worlds. Encourage your child to write and then even if they can’t say the most difficult or distressing thoughts out loud, then they could at least write them down. Writing is an amazing tool; it allows us to process emotions in a calm way, which no-one else has to see if we don’t want them to. It also allows us to keep some of these feelings on paper, so that when we go back and read what we have previously written, we can see how far we have come.

If your child doesn’t like the idea of writing about themselves, encourage them to create a character. This character could be based on them and have the same fears, but this character may also find ways to overcome these fears. Or, it may just be a really good insight into your childs mind (if they are happy with you reading it). Writing may also serve as a precursor to talking about it, if we become comfortable with the language used then we are more likely to slowly become comfortable with talking about it.

Allow Your Child to Be in Control

This can be hard – so often we, as adults, just want to swoop in and make everything better. But anxiety can sometimes make you feel like you have no control, and we need to retain what we do have. A good example of this would be coming up with a plan of what your child thinks may help when their anxiety is getting worse or when it is at its peak.

You could use a 1 – 100 scale, or even various emoticons, eg 😊 all the way along to ☹ but at each point allow your child to have input as to what it feels like and what may help stop it escalating. For example, at a level 50, they may find that they are fidgety and unable to focus, but getting some fresh air and going outside may help calm them. Or at a 100 (with 100 being peak anxiety) they may be able to tell you in advance what will help, so that you can be better equipped to help them when communication is hard, or even impossible.

Image credit: https://ccp.net.au/suds-thermometer/

It’s not foolproof and sometimes it can be very hard to remember or acknowledge what we felt whilst experiencing a panic attack or complete numbness, but sitting with your child and helping them work through these stages (even if you have to adapt them as time progresses) and allowing them to make the final decision over what steps you take will help them feel they have control over what can feel like a terrifying situation. It will also give them tools that will help later in life when it comes to dealing with difficult emotions.

Be Kind to Yourself

Having a child with anxiety isn’t your fault, it doesn’t mean that you have done anything wrong and it doesn’t make you a bad parent. No-one expects you to have all the answers, its ok (and perfectly normal!) to feel angry and upset at the situations that mental illness puts us into, and just because at times you may feel helpless it does not mean that you are.

However, you do need to look after yourself. Supporting someone with anxiety can be exhausting – we all absorb energy and we all, at different levels, empathise. At times, I think we have all wished that we could bear someone else’s pain for them – but, we can’t. What we can do though, is make sure that we are strong enough to help them carry the burden of it, and that includes keeping ourselves healthy.

Never be afraid to get help from your local GP. Just because you go there presenting with a mental health issue, it doesn’t mean that they will go for medication as a first (or only) resort. There are various therapies available and, if you can, its usually wise to let the school know of the situation aswell. Very often they have procedures in place to help children suffering with emotional or mental health issues.

There are also usually support groups available for carers and those who have children who are struggling with anxiety, along with other mental health conditions. Your GP or local mental health unit will have information about these.

This is by no means an exhaustive list, and it’s worth noting that I am not a mental heath professional. I have lived with anxiety for the majority of my life, and whilst I have learnt of things that do help, these can take years! If you have any other suggestions regarding what may help, please do let me know in the comments ❤

Useful Websites

https://youngminds.org.uk/

https://www.kooth.com/

Related Posts

The Impact of Bullying

Validation Isn’t Just For Parking Tickets

Too Sensitive

Main image credit: Mikael Kristenson on Unsplash


Thank you for reading If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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The Impact of Bullying

When I was just a little tot, my family moved into a church building. It wasn’t a typical church – no steeple, or anything like that. It was in fact the old offices of the local electricity board and it looked like a building that wouldn’t seem out of place in soviet Russia.

It was the late eighties – the rooms were big, the floors covered in carpet tiles. Large, corporate, geometric patterns were on the wallpaper and red handrails adorned the main central staircase. Our flat was at the far end of the building, upstairs. I must have been the only child at school that at times wished for a smaller bedroom. But it was our home and my parents made it feel just like that.

Throughout infant and junior school, I don’t recall an awful lot of bullying. I was quiet, but I wasn’t all that different to the other kids. I had a close friend who I had gone to playgroup with and we remained friends throughout those years. I remember not being overly confident when it came to school plays and wanting to be at home rather than at school – but I think that is just the mark of the sensitive, introverted child that I was.

When I moved to senior school though, something shifted. The school was much closer to our home in the church and it wasn’t a nice area. The church itself was well-placed, my parents helped so many people in the local community with food banks, Christmas dinners and just having a ‘safe’ place to go to, at any time. The church building also housed a toddler group, playgroup and café. Local groups met there for woodwork, music, keep fit… it was the community hub that the community needed.

Suddenly though, to my new peers, I was different. Not only was I quiet and sensitive, I also lived in a church and this made me stand out. My friend from junior school moved up to senior school with me, and I though all would be well – we’d stick together, wouldn’t we?

No…

We stayed within the same friendship group, but it wasn’t a healthy one. There was a definite shift in dynamics once we had paired up with two other girls and within a short space of time this caused a definite split between the four of us. It has only been in the last six months in therapy that I have been able to look at this group of the four of us – which did merge into six – objectively. Now I can see the split, 3 girls who had the power and 3 that didn’t.

I don’t know how it happened, not really. There weren’t vast differences between us in the areas that you would think would cause such a drastic change, but once it had happened it was very hard to get back on an even keel. I tried making other friends, but I was quiet and shy and over time my self-esteem took a hefty whack. Who would want to be friends with me? Besides, the moods of these three girls (one in particular) would change from day to day. On Monday I may be left out of everything, called a witch in front of the rest of the class whilst the teacher was out of the room, forced to hand over parts of my lunch, or be told that I wasn’t good enough, pretty enough or clever enough to be part of the group… but then, on Tuesday they could be the best friends that one could wish for.

In adulthood, this is seen as coercive and controlling behaviour, it is recognised very clearly as abuse.

In childhood, its playground banter.

For 5 years, I had this. Day in, day out. It carried on even when our family moved from the church and into a normal house. I didn’t know if I was going into school to see my friends or my tormentors. I got even quieter, I literally and metaphorically, shrunk. I told my parents, after much deliberation and the main bully was brought in from PE to sit in the deputy heads office and apologise… she told me, my parents and the school staff that it was only a joke, that none of it was serious and she couldn’t understand why I was hurt by it. Nothing was done and afterwards she quietly ramped it all up; she was the victim now, someone had told tales on her and I was the tormentor.

I stopped eating normal sized meals for a girl my age and size, how could I eat when my stomach was in knots? I didn’t want to do anything on the weekends or with my family because I knew that if I thought about it whilst at school it would make me want to cry.  I was terrified of not only going to school but also going out in my local area, I started to have panic attacks and my chest hurt constantly from the anxiety. I was admitted to hospital for tests to find out what was wrong with me – it was deemed by the school and by doctors that I had the problem. I saw a child psychologist who would sit and talk to my parents afterwards whilst I tried to read a book in the waiting room. But what could I tell them? I had seen and experienced what happened when she was pulled up on her behaviour and I couldn’t go through that, not again…

Why am I telling you this? Its not for pity, hundreds of thousands of children get bullied at school every year and although specific in its details, my experience is not vastly different from any other. I’m telling you this because I am now 34, I still have blackouts in my memory of school – whole years that I cannot piece together. Since leaving school, I have suffered with anxiety, depression, agoraphobia, nightmares and body dysmorphic disorder which has in turn led to bouts of bulimia and anorexia. I have had various therapies, I have engaged in promiscuous behaviour in order to validate my self-worth, I have found it hard to trust people and I have abandonment issues. I also have Fibromyalgia – which, the causes of which are generally pretty much unknown, but it is thought that the symptoms occur when we have spent vast amounts of time in a ‘fight or flight’ situation.

Image credit: The Mighty

The effects of bullying do not stop once a child leaves school. The effects of sustained bullying can impact whole lives. I do not have a career because of my mental health, and I do not have children either, even though I have dreamed of being a mother for as long as I can remember.

It is only this year – 20 years after I went through these experiences that I recognised, through therapy, that what I had endured constituted trauma. I did not feel safe for years. I wanted to hide and make myself invisible in order the stop the attacks for years. I did not know what to expect every single day for years. I hid my pain from my parents because I couldn’t see the answers or the point in telling them the details for years.  I wanted to do anything to make it stop, including making myself disappear for years.

And then, once I was out of there and away from them, I tried to forget it and move on with my life like any normal person would, for decades.

But it doesn’t work like that. Things have to be dealt with, we cannot just put a lid on it all and expect it to go away. I had been led to believe that my thoughts, feelings and emotions weren’t valid. The norm, for me, was not telling anyone when I was experiencing mental anguish and so therefore when I did get upset, or angry, or depressed, I automatically did not tell anyone and I deemed that normal. I lost my voice and my expression – the only way I had of expressing myself was through writing, and even then I didn’t – and still don’t – want to upset anyone that read it.

I had learnt that if I made myself small, I was ‘safe’. This was founded on nothing, but the wish to disappear but it is still something I aspire to now. It has led to dangerous relationships and damaging friendships with people within the BDSM community where ‘little’ is very often seen as something to aspire to, but not something that will always keep you safe. It has affected my body image, and made me lose even more of my voice and the confidence to express it.

I’ll say it again: The effects of bullying do not stop when a child leaves school.

The voice of the main bully has been replaced with my own; there will be days when the not good enough, pretty enough or clever enough mantra will repeat in my head, in my own voice and I can find all the evidence needed to back those claims up. It becomes very hard to argue against yourself when you have a lifetime of negative associations tied into those claims.

We would be naïve here if we thought that bullying was contained to classrooms and playing fields. It doesn’t just happen to children. It happens to adults too, in workplaces and friendship groups. By colleagues, managers, family members and so-called friends. I have recently left a role where my new manager was a textbook bully – and gaslighter at that. On Friday night, I consoled my colleague who has also just resigned from his management and over the weekend I have felt lost, unheard, sad, angry (I think), unmotivated and very, very low – but I could not put my finger on why.

It was only last night whilst washing up that it came to me – this man, this manager had triggered emotions within me that were felt 20 years ago. Over the last few weeks I have been in fight mode – I quit, I filled out my exit interview form (myself, he didn’t even want my voice to be heard on that), I spoke to friends about it, I felt relieved when my unemployment commenced because I wasn’t in that situation anymore and for a couple of weeks I saw friends, did yoga, made jam, applied for jobs…. all fine and dandy. Until, until I heard about a conversation on Friday where he invalidated my colleague and in invalidating my colleague, he also invalidated the effects of the bullying that led me to quit my job.

He had done exactly what my school bully had done in the deputy heads office all those years ago.

One more time, for those that haven’t quite understood: The effects of bullying do not stop when a child leaves school.

There is a light though, a chink of positivity within all of this – I know how important compassion, inclusivity and validation are. I will never, ever, knowingly exclude someone. I believe firmly in equality and acceptance I will strive to treat everyone the same – regardless of background, gender, wealth, disability or appearance. We all have unique gifts to offer, whether we are quiet or loud or somewhere in between, our voices matter – each and every one of them. I am trying, really trying, with the help of wonderful friends, my husband and my family to realise that I can include myself in that, but at times it is hard. Unpicking decades of ingrained beliefs doesn’t come easy…


If you suspect your child is being bullied, or is the bully then Bulling UK have some wonderful resources that may help.

If you are being bullied, then Relate has some great advice on their website and also offer a confidential chat service.

If you are living with the effects of trauma and its really hard today, then some grounding techniques may help or even some yoga designed with trauma in mind. I did this routine earlier today and it centred around breathing exercises and feeling safe within your body. I can highly recommend it – also, the dog is super cute! 🐶

Original image credit: Paola Chaaya on Unsplash

Thank you for reading If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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The Safety Trap

Image by: Max Nguyen on Unsplash

TW: Disordered eating, body image

I have read a lot of other people’s blog posts today, I have scrolled through Twitter, I have done some other work… and, I have procrastinated.

I have procrastinated because I know I have been putting this blog post off for a long, long time. But I know it is forming a sort of ‘block’ within my mind and therefore within my writing. It’s a subject that has been a bit of an issue for me as long as I can remember, but one that I have never fully grasped – I still don’t know if I am any closer to grasping it now, but I will try and explain it as best I can.

I do feel that with the theme of this year’s Mental Health Awareness Week being ‘Body Image’, it is a good time to broach the subject; I also had a chat with my therapist yesterday about how I could be suffering from Body Dysmorphic Disorder, or BDD. So… the timing certainly feels right to broach this subject.

And the subject is…. *drumroll* Smallness.

More specifically, smallness and safety.

Growing up, I was a skinny kid. I don’t think I ever reached much above 7 stone until my mid to late teens. Think gangly legs and arms, long dark hair, big eyes, freckles. I never even really thought that much about my body – it was just there. Even throughout secondary school, throughout all of the bullying, my body didn’t really come into it. I never felt super confident, but I just didn’t give it that much thought. My weight increased slightly when I left school, but when I met my (now) husband, aged 19, he would later go on to comment that he sometimes thought he would break me I was so slim.

Fast forward a couple of years, I had moved down to Somerset. I was still slim, but I had this little belly… I used to do ab crunches, sit ups, things like that to try and get rid of it. I wasn’t large by any means, but I knew it was there. I worked full time in a care home though – my job was active, my mealtimes a little out of kilter with the ‘norm’. I could skip meals and be so busy that I wouldn’t even notice…

And then I went onto the pill injection, Depo Provera, injected into my bottom every three months.

And wow, my body changed. I wasn’t eating any more than normal, or being less active than normal but my hormones were all over the place and the weight crept on. With the weight, came the boobs. I went from being a 34C to a 36DD – the difference in my appearance was startling.

And I hated the boobs.

I would complain to my husband that they were too big, that I just wanted to make them smaller. I came off of the pill after a couple of years (I was also sliding into depression – but at the time, I just thought my hormones were out of whack) and although some of the weight came off, the boobs stayed. I would (much to my husband’s eye-rolls) wear minimiser bras, looser tops, clothes that were cut in such a way that my boobs weren’t really apparent…

And then, over the next few years, the depression crept in.

When it was finally diagnosed, I hadn’t been eating properly for months. My anxiety stole my appetite and my adrenaline was constantly working – so whatever I did manage to eat just got burnt up pretty quickly.  I wasn’t intentionally not eating, but even now if I am super stressed, I just cannot stomach food.

My weight plummeted, not to drastic levels, but within six months I probably lost a couple of stone. I dropped 3 dress sizes, I look back at pictures of that time now and I am all big eyes and tiny frame.

The boobs and the tummy though, they are still there.

My boobs never went. When I went and had my wedding dress fitted in 2017, I had been working out pretty consistently for over a year – the woman in the shop commented that I had an enviable figure, petite but with great boobs. I look back on some of our wedding pictures and I think my boobs look grotesque, I have picked some of those pictures apart so much that looking back through my wedding pictures is no longer an enjoyable experience for me. I have three or four that I am comfortable with, that’s it.

The majority of bras that I wear are ones designed to minimise, but I have no idea if or even really how they work. I wear a lot of scarves; I just hate any attention being drawn to that general area. Even typing this now though, I feel wrong somehow. I am a woman, I should relish my curves, I should be thankful that nature (and synthetic hormones) gave me boobs that some women dream about and pay thousands upon thousands on surgery to obtain. The thought that gets me the most though… is the guilt. I have healthy breasts, what on earth do I have to complain about?

It’s not just those though…

It’s my stomach, my nose, my hips and my teeth. It’s that my forehead is too big, my hair (dependent on length) is too long or too short, it’s too dark, or not dark enough. My eyes have too many wrinkles around them, I’m too tall (I’m 5’5”)…. There is not one single thing that I can look at and go, yeah, I really like that feature.

For years I thought I was being vain, I told myself off, told myself to stop being so ridiculous. But then my jeans would feel a little tighter, someone would take a picture from an unflattering angle, or a small comment would be made and my entire world would feel like it was crashing down around me. I knew, I know, that our bodies are just our shells – what we look like in the grand scheme of things really does not matter and we all are our own worst critics. But over the years I tried everything to make myself smaller; from exercising for hours on end every day, to diet and protein shakes, to various pills, teas and herbal remedies that promised to shift the pounds. I have beaten myself up for second portions and tried to bargain with myself that I will exercise it off in the morning. I have cried over my body and felt such disgust and shame that I wish I could just slice parts of it off. I have developed a phobia regarding eating in front of people I don’t know and I have got to the point where I cannot bear even the noise of my husband (or anyone) eating anything, not just the ‘crunch’ noise, but all of it.

I love food, but it has become such a source of anxiety for me that it terrifies me.

And I know that the anxiety comes from one simple fact – food will make me bigger if I don’t keep a tight control over it, and the last thing I want to be is that most feared of all things… big.

My logical brain knows that there is nothing at all wrong with being big, and I think that this is where my confusion over the whole subject comes from. I will talk about body positivity and how amazing the human body is until I’m blue in the face, I know how we need to fuel our bodies, I have studied nutrition, I find other women’s bodies beautiful – but I cannot apply any of that back to myself.

But I don’t think that this is a weight thing, or an image thing.

I think it’s a small thing.

A friend said to me yesterday, after therapy ‘ I wonder if you still have that image in your mind of you as a 14 year old girl’ and my response was ‘No, but I want the figure of that 14 year old girl’

I don’t want the boobs and the hips and the squishy bits – because people notice them. Men, notice them. I work on a reception desk and there are men that come in and I watch their eyes drop from my face to my chest as they talk to me. I have had men flirt with me because of (I’m pretty certain) my figure. All of this *motions wildly around my body* makes me noticeable. Even walking across town to my therapist’s office, I walk along some pretty busy roads and I hate it, it’s that feeling of being exposed and people in traffic jams or passenger in cars and lorries looking at me, judging me…

And I know, my logical brain once again knows, that they aren’t. I don’t sit as a passenger in a car and gawp at whoever I see walking down the road and even if I did notice them, I’m not going to judge them harshly in any way.

But my logical brain gets shouted down by all of the other voices so often that it’s shrunk.

Just like I want to do, all. the. time.

Last week I managed to fit two puzzle pieces together, after a long, long time of feeling confusion and guilt over all of this. I have always been noticed in a critical way; growing up we lived in a church building in a rough area of town – we were different and therefore we were noticed. If we went into our garden, kids would shout over the fences, when were back inside bricks would come through the windows and I would lie awake at night worrying that the next thing that came through the window or the letterbox would be on fire. Also, everyone at school knew where I lived so once again, I was noticed, and bullied.

It became much, much safer to hide.

So being small = being safe.

And my mind has run with that, it has embedded that into its very nature. I don’t want to be big size wise, I also don’t want to be loud, or too confident or have too much to say – because those things do not keep me small and therefore do not keep me safe. If I have talked passionately about something, if I have talked in front of more than a handful of people, if I have done something great and been celebrated for it – I am not safe because I have become bigger. I have taken up space, both literally and metaphorically and then the doubts not so much as creep in, but burst in. The negative self-talk gets louder, I replay conversations in my mind and of course I instinctively know what that person really meant when they said such and such, and that little sigh obviously indicated that they were bored and I talked too much about myself or I didn’t give the right response… and its horrible. Its really, really horrible…

Starting this blog for me was huge, because this is my voice. These are my thoughts, I am putting myself out there and when you put yourself out there… you get noticed. This goes against everything that I have concluded in my addled brain as being ‘safe’. It’s like I have this really strong desire for safety and hiding away – but I also have this exhibitionist streak running through me that almost wants to be noticed!  I don’t understand it, and I cannot pretend that I do – but there is a part of me that takes being noticed and almost likes it, twists it into something good. I hate that men sometimes flirt, but at least they have noticed me. I post a writing on my blog and feel really positive about it, or an IGTV video of a Facebook or Twitter status… but as soon as it’s out there I instantly want to delete it because people are noticing it, but I have chosen to put it out there in the first place.

I am constantly in turmoil with all of this…

It runs through my mind, it hides in the dark recesses; it toys with my emotions and my relationships. I put myself in situations where other people can make decisions for me because there are times when I don’t trust myself to make them myself – this can be as big as deciding when to start a family, or as small as what to choose for dinner. I let myself sometimes be unheard because I feel that what I had to say wasn’t all that important anyway. I finally, let go of a toxic friendship at the start of this year, but even that was one built upon dominance and gas lighting. However, the real battleground, is my body.

Because I do not have the figure I want. I am not as small petite as I would like (and let’s be honest, if I was 34 with a 14 year olds body then things would not be right, at all) I know that I am not big but the image I have of myself is so vastly different to the image I see of myself in photographs that I literally cannot bear it. My husband took a photograph of me the other day – we were out for a walk in the woods and as soon as I saw it, the panic set in – and it was panic. It wasn’t a ‘oh, I’ve perhaps put a couple of lb’s on’ it was a ‘I have to be smaller than this, I look like a whale, I feel  grotesque and like I have lost control and I need to be smaller now, right now, not after a couple of weeks or months watching of what I eat and exercising  regularly – but right. now.’

A few moments later, I took a selfie and I looked at my face and it looked so slim I saw a glimpse of that very poorly woman from 9 years ago looking back out at me. I do not know which picture to believe, but I am convinced that it is the first one. I have no idea what my body looks like – there are times when I obsessively try and find out a celebrities size and measurements so that I can ‘compare’. I don’t trust what I see in the mirror anymore, or when someone tells me I look nice, or what a photograph depicts. None of it feels either real, or true…

The woodland photograph incident was two days ago. I’m still feeling like that now – yesterday was an awful mental health day and today I have had to put my brave pants on and get myself to work, but those voices are still there. My body is aching because I worked out this morning when I was already exhausted, I have eaten because I know I need to, nuts and a cuppa soup and herbal tea. It’s not enough and I have a headache but I’m worrying about what we have planned for supper regardless…

I cannot carry on like this. But I don’t know how to change the way that my mind has developed in order to keep me safe. I cannot look at that picture from Tuesday and see someone who is kind, empathic, creative and worthy of love and affection. I look at that picture and I just feel panic, because that is not the image I have of me, in my mind.

And that doesn’t feel safe.

But then… not a lot does.

Thank you for reading 🙂 If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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So Unsexy

Image credit: Eric Nopanen @ Unsplash

Alanis Morisette – So Unsexy

I can feel so unsexy for someone so beautiful

Way back near the start of this round of therapy, we talked a little about self-esteem. He asked me what I liked about my body and my appearance and I puffed my cheeks out and thought, and thought… and, thought…

“Ok, what don’t you like?”

“Well, I don’t like my teeth, they aren’t straight. My nose is too big, as are my boobs, I really hate having boobs, and I know some women would kill for boobs, but I really wish they were smaller. My hair is either too bushy or too flat and I can never get it that shade of red that I would love to have it, I don’t really like my hips, I always feel too tall, I wish I was shorter…”

I paused…

“I suppose my eyes are ok? But my vision isn’t great…so I would change them for eyes that could, y’know, see. But then I like wearing glasses because they kind of hide my face a little, so I don’t really mind that…”

“You wish you were shorter?”

I nodded.

“You aren’t…tall. You’re what, 5’6?”

“5’5” I corrected him, that inch is very important – this comment was one we would return to over the following few weeks.

So unloved for someone so fine

I am fortunate in the people I have around me, I am well aware of that. I know that I am loved – on my good days; I can feel it, like static electricity almost. My husband loves me, as do my family and also my friends. I am told often, reminded daily.

On good days, this goes in.

On my bad days, depression wins. On my bad days, I am a nuisance, I am too… depressing! Too much. I’m too boring, I talk about myself more than I should, I’m terrible company, I’m too tired… I couldn’t possibly reach out because it would burden someone else with this heavy, leaden pain that I am feeling – and all of those people that love me, well, I love them back. I could not possibly inflict them with this, I could not bear for them to have to shoulder even one ounce of the pain that is so prevalent on those days. So I don’t text when I should, I don’t pick up the phone and very rarely do I try and fathom how all of these jumbled thoughts can make their way out of my mouth in coherent sentences.

It doesn’t mean I am unloved. It means depression tells me, hisses at me, whispers at me that the love that is there is too fragile to bear the weight of my burden, to bear the weight of its influence.

On my good days I know its lying. On my bad days, it wins.

I can feel so boring for someone so interesting

Tell me about your dreams… about your fears and your darkness. Tell me about what you hope to achieve and what keeps you awake at 2am. Tell me stories of your childhood, indulge me with tales of the things that make your heart beat faster and your spirit soar, for I will listen attentively, I will treat your words as precious gifts because for me that is what they are.

But ask me to reciprocate… am I worthy of that? To take up your time with ramblings about my views and hopes, fears and dreams. Won’t you get bored? Won’t you wish you had never asked? Will I see your eyes glaze over, or get the sense that you are simply waiting for your turn to speak?

Maybe, maybe not, but it’s safer to not find out. Isn’t it?

So ignorant for someone of sound mind

I didn’t get great grades. Bullying and my subsequent mental health issues meant that I only took two GCSE’s and I didn’t do brilliantly at those. I went back to uni four years ago, but my degree is unfinished…

I know, that it isn’t for lack of intelligence.

I know, that I can think logically and practically and I have read enough books and educational texts to know that there is no malfunctioning part of my brain that doesn’t process information. I know that I can participate in stimulating conversations and debates and if I am passionate about something then I can talk for hours, and argue my point very well…

But, again, that doubt.

Tiredness and fibro fog both make concentration hard at times. I can read an article and know that I haven’t absorbed a word; I can read the same paragraph two, three times and then have to read it out loud so that the words can filter into my brain. Sometimes, I simply can’t read – it’s too much, too stimulating. I forget things now more regularly than I once did; it is both frustrating and terrifying in equal measure how my brain will blur out words, conversations and pieces of information.

Last week, I was holding a stick and I wanted to tell my husband that it would make a good catapult. The word would not come, I could see it, I stood in our kitchen and (much to my husband’s entertainment) acted out in great detail how you use a catapult. I came up with the word I thought was the right one – yahtzee. (I mean, yahtzee?! What the actual…?) But no ‘catapult’, was gone. And yes – we all forget words, if this was a one off then I’d laugh it off, but it isn’t.

And that makes me doubt myself and how my mind is able to store and process information. It makes me Google things, simple things, just to double check. It makes me ask for confirmations of things via email so that I don’t forget and it makes me imagine that my brain is made of cotton wool and my thoughts and opinions must somehow be skewed by memory and therefore irrelevant or wrong.

Oh these little rejections how they disappear quickly

The moment I decide not to abandon me

I have to stick with it all. Stick with reminding myself that beauty is not all about how we look and that I am loved, that I am not boring and that I am intelligent – even if not conventionally so. I need to be there for myself, show up for myself each day and give myself those pep talks as freely as I give them to others. The strength that I need now can only come from within, and I cannot abandon that, or myself, anymore.

Thank you for reading 🙂 If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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Recognition

Image credit:Kawin Harasai @ Unsplash

This morning on social media, I saw a post by a woman who achieved something wonderful yesterday; she ate lunch.

She didn’t feel that it was something wonderful, or that she achieved because, well, every one eats lunch, right? So why should we celebrate this as an accomplishment?

Around the same time I was also having a chat with a friend who suffers from fibromyalgia. He was asking me how I managed the transition between work and home, how I knew what I needed when and also, how I coped? He told me of a time when he worked and the exhaustion would be so great that he would fall asleep as soon as he got in through the door and wake up in the morning in the same clothes, even with his shoes still on, and having to do it all again…

It brought me to mind of a period of time last year when I knew something was wrong, but I didn’t know what. I was depressed, quite severely so, but I didn’t think that was the sole cause of just how exhausted I was. However, I did that thing we all do, I compared myself to others and ultimately ended up feeling worse. How could I warrant being this tired? My friend worked and studied, and had 2 children and she wasn’t this tired!

My husband worked 6 days a week and I only worked 5, how selfish of me to be too tired in the evenings or weekends to not be able to do anything fun.

My parents, both past retirement age had days fuller than mine and still had energy to spare!

You can see how these thoughts spiralled…

I now know that yes, I was severely depressed. I also had undiagnosed fibromyalgia and I was taking an anti-depressant that was a) no longer working and b) a sedative, it was no wonder I was so exhausted all of the time!

We do this though, we all do. We minimise our own feelings by comparing them to others and we don’t just do it with exhaustion, we do it with pain and we do it with experiences of trauma – on the flip side of that, we do it with how much we manage to achieve during the day and we do it with what we achieve throughout recovery.

I understood how the woman on twitter felt this morning, because I have had those exact same thoughts. I have felt embarrassment and even shame when I have been congratulated for walking my dog, or for enduring a whole day at work. How ridiculous that I should be congratulated for doing something that millions of people – including those supporting me – do every day! And so I didn’t hear it; I didn’t hear how proud they were of me or how this was another step forward in my recovery, because I was too busy beating myself up for it.

I know now, that I should have felt proud of myself for achieving those things. Yes, my husband may not think twice about getting our dogs lead on and marching him around our local playing field every evening – but I did, I still do. I had a period of about eleven months where I couldn’t leave my house alone because my anxiety was so bad. All sorts of scenarios would play out in my head, and that was just me, alone. Add a dog into the mix and those scenarios doubled!

It’s not easy to change the way we talk to ourselves, I certainly haven’t mastered it yet, but I think I am beginning to learn just how important that inner voice is. Last week in therapy we discussed how my inner voice is very critical and also how it has almost replaced the voice of those girls that bullied me all those years ago. I wouldn’t dream of ever talking to anyone the way that I talk to myself.

But I think I do need to hear when others talk to me kindly and to learn from them that I am a woman worthy of praise. When my parents, or my husband or my friends say they are proud of me, they aren’t lying; they aren’t saying it just for something to say. These are people who I know, and trust and choose to surround myself with – I seek their counsel and value their opinions on everything else, so why would that suddenly change when it comes to their opinions regarding me?

I also know, all too well how I relate to others. If someone who struggles with anxiety tells me that they have managed to achieve a task that was difficult because of their struggles then I am proud of them – that could be from walking their dog to talking in front of thousands of people, if you have anxiety there could be very little between the two in terms of terror. I don’t roll my eyes and go ‘well, duh, 9 million* other people also walked their dog today’ because, y’know, that would be kinda ridiculous and also it would be ignoring the fact that we are all different and we all face our own struggles every, single day.

That person that talks confidently in front of thousands of people, they may have a deep rooted and overwhelming fear of gaining weight. It may be an achievement for them to sit down and eat a meal without feeling panic or terror.

That really bubbly person in your friendship group, they may absolutely hate being alone. They may achieve something just be spending some time with their own thoughts.

That polite receptionist, she may be battling depression and fibromyalgia and it could be the hardest thing in her world to work for nine hours straight *ahem*

There are literally billions of examples. On my good days I know I should be proud of myself because I am working, because I am in a good routine and I managed to eat/socialise/ sleep well etc – and it is the little things amongst that that I have had difficulties with in the past. Those little things, when I achieve them should be celebrated and acknowledged, because they are the things that keep life ticking over. The getting up, taking care of myself, taking responsibility, setting boundaries, doing the therapy, saying when something is wrong, addressing my emotions as they come up and learning how to manage them – these are all important things that are part of my recovery and if anybody else was doing them then I would be there in the side-lines cheering them on all the way.

But I need to learn how to do that on the bad days as well as the good. I need to find out how to silence that little inner voice that hisses ‘So what, you got out of bed when you were feeling crap? Let’s look at the list of things you didn’t do!” – Because that voice isn’t helpful, and it is also how no-one else thinks of me.

I am definitely still a work in progress, but I think the more I encourage  and praise others for their achievements and stop looking at them as ‘big or small’, the more that little inner voice will get the message that actually, on some days, having a shower is tantamount to climbing a mountain.

And that is ok.

{* I fact checked this}

Thank you for reading 🙂 If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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Online

Photo by NeONBRAND @ Unspalsh

This is a very hard subject for me to broach. Its hard for a number of reasons, but one of the main ones is because I am going through one of those phases where every thought I have seems contradictory. This is anxiety, I know it is, its my brain not trusting what it tells itself.

Its also hard because I don’t want to offend or say something ‘wrong’. I know that online you are likely to offend someone just by saying hello, but this is a sensitive subject to some, and I feel I should point out from the very start that this is my opinion, based upon my experience. It will not be the same for everyone…

I am someone who spends a fair amount of time online. I always have been, from using dial-up in my brothers’ bedroom to using the internet for work and my own passions (this blog). It was only natural then that when I was first unwell with my mental health and at home a lot of the time, I sought comfort online. I very quickly found a forum for people with mental health issues and on that forum I made friends – some of which I still have nearly a decade later.

The me that sought comfort then feels like a different person to the one writing this, now. I am still me of course – I am still brunette, quiet, sensitive. I am sat in almost the same place, I still have a dog (albeit a different one) nearby. But in many ways, I am not the same person; I have changed, I have had to. I have had to educate myself about my own mental and physical illnesses, I have grown mentally, spiritually and also physically. I have learnt things about myself through therapy, through pain and through heartbreak. I have experienced amazing joy and happiness, but I have also reached points so low that I have questioned whether I would ever surface from the pit of my despair. I have found incredible, amazing friendships and I have lost people who I thought would be in my life forever.

And you will have done similar, I am sure.

Because we are all constantly growing, learning and evolving – even if at times it doesn’t feel like it.

When I was a member of this forum, I like to think I helped people. I am still in touch with someone now who has thanked me very recently for the help I offered – and I was helped too, by others. People who reached out when I was frightened and lonely and daunted by things happening to and around me. For nearly 11 months, back in 2010, I struggled to leave my house – I had agoraphobia, I couldn’t even walk my dog, let alone go to work, so this community formed a little extended safety net of people. My boyfriend (now husband) was amazing, but he didn’t fully understand the magnitude of what was happening, my parents were the same (and also ninety miles away). These people though, they got it, they understood, and that was great and what I needed – I needed to feel understood, less alone and less freaked out. They were, quite literally, a lifeline.

I have found little mental health ‘communities’ in other places online throughout the years. I have spoken to people dealing with their own mental health issues and I have marvelled at how people experiencing anguish so great will help others without a moment’s hesitation. I have had wonderful, expansive conversations that have helped my own recovery and growth and I have watched as friends have recognised issues, sought help, and bloomed. I have talked friends through relapses and confided in them about my own in moments of darkness and struggle. I have felt fortunate to have all of this help, experience and solidarity at my fingertips or at the push of a button and I have felt my heart swell as I watch the bravery of others as they tell their stories, and help, one voice at a time to break down the stigma and confusion surrounding mental health.

But I have also seen the flip side.

Because there will always be one; I have formed a codependent relationship with a man who’s struggles with his own mental health threatened to destroy my own self-worth. I have lost friends because we have been at different stages of recovery, I have cried and grieved over people that I will never have the chance to meet. I have seen how predators can wheedle their way in, gain trust, lie and leave people (including myself) in ruins.  I have seen whole communities turn against one person for having an opinion or saying something out of turn and I have not been in a place strong enough to make a stand for either side. I have watched the steady decline of friends who I have had to accept that I cannot help in any way other than being there, listening and offering brief words of comfort or support. I have found myself being triggered and have had to work out the underlying reasons why and work very hard to heal myself – that one, is still a work in progress.

I have had to also learn the difference between online, and real life – but also, how closely the two are linked.

Yesterday, I had a pretty bad day. It was a bad day for a number of reasons – I was in a lot of physical pain and as a knock-on effect, my depression was simmering and bubbling away. My anxiety was through the roof- as it has been for nearly two weeks now and I was, exhausted. I slept a lot, but in moments of wakefulness I scrolled through Twitter. This… didn’t help.

What happened yesterday on Twitter isn’t the issue here, I think anyone who knows anything about mental health can agree that asking someone about their self-harm scars, is wrong. But what impacted me, more than that – as a survivor of self-harm and as someone who still struggles with that and has scars – was the reaction and subsequent fall out.

There are two terms that are banded around Twitter a lot; ‘Mental Health Community’ and ‘Mental Health Advocate’. Now, I am not saying that either are bad – to be able to access support and companionship online regarding illnesses that are, by their very nature isolating, is wonderful. But it is wonderful only when it works well, when difficult subjects are handled sensitively and when those involved appreciate that every-one is fighting their own battles.

I will not be putting the words ‘Mental Health Advocate’ into my Twitter bio at any point, not because I have anything against advocating for better understanding around all mental health disorders but because I feel I am wholly unqualified to make such a claim about myself. According to a post I saw yesterday, a ‘Mental Health Advocate’ must have an understanding of all mental health conditions – and I am sorry, but I don’t. I rarely understand my own, never mind someone else’s and it would be wrong of me to profess that I do.

Mental illness is not like diabetes, its not like a broken leg. We know about diabetes – we know what causes it, we know the symptoms and we know how to treat it. I know there are complications and its not always as straightforward as that, but it is a case of cause and effect. Same with a broken bone. Mental illness is different, it is vast, it is – even by medical professionals – at times misunderstood and misdiagnosed. I have depression and anxiety but my symptoms can vary massively to someone else that has depression and anxiety. I have an unhealthy relationship with food – but I am neither anorexic nor bulimic, even though I have exhibited symptoms of both. I am a survivor of trauma, and I only found that out about myself within the last six months. I exhibit signs of other mental health disorders, but I have not been diagnosed as having them. I also have a physical illness that has, possibly, been brought on, in part, by stress and trauma.

And that is me, just one person. I struggle to understand my own behaviours and reactions to things – that is why I go to therapy, that is why I spend a lot of time working on myself and trying to recognise what is me and what is my illness.

I can empathise with other survivors of trauma, with people who also struggle with food. I can go to group therapy alongside people who have also fallen under the same diagnosis, but I can still exhibit wildly different symptoms from them. I can listen and understand and learn, I can help to validate someone’s feelings and offer them comfort – but I am not a medical professional and I am not immune to being hurt or affected by someone elses actions. I can understand that mental illness – whatever the ‘label’ can make any of us act in a way that is out of character or in a way which we later come to regret, because I have been there and done those things myself.

But putting that title upon yourself – ‘advocate’ – is pressure. I have seen posts by people asking others what they believe a good advocate is, what they need to do in order to earn that title, and honestly, I would tell them not to worry about earning it in the first place. If you are here, if you are fighting mental illness and still waking up each day, if you are sharing your stories and helping others with their recovery – and even if you are not, even if you are just working on yourself and growing and learning each day, then you don’t need an additional title to validate your worth.

It is not up to me to tell others how to behave online and it is not up to me to say what is right and what is wrong, but yesterday was incredibly eye-opening. I have unfollowed a lot of accounts and I do not believe that anyone had any malicious intent, but for me, dealing with my own mental health, seeing the posts and the comments that were being posted by ‘advocates’ made me really question the value of that self-imposed title. I have no doubt that there are wonderful people who advocate every day on Twitter, or any other social media platform – with or without that title. But, I would always exercise caution, and advise that others do the same, because online isn’t the same as real life, but the fall-out from it all can be life-alteringly real.

Thank you for reading 🙂 If you have enjoyed this writing, please feel free to come and join me on my following social network pages to see my new posts and daily musings:

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Fibromyalgia

Image credit: Manos Kolovouris @ Unsplash

I write a lot about mental health, namely anxiety, depression and disordered eating because these are the diagnosable illnesses that impact me the most and that I feel most comfortable sharing my experiences about. I don’t feel qualified to talk about other mental illnesses, because I have little or no experience of them and I feel that I would be doing a disservice to anyone that does have to manage with them on a daily basis.

One other illness that I do have though is fibromyalgia. It is, strangely, one that I also feel unqualified to talk about in great depth – I think this comes down to the way that it is diagnosed; it’s one of those illnesses that falls into a grey area, very much like Chronic Fatigue Syndrome (CFS), there is no blood test, no definitive way of telling you have it so how can you ever fully… know? It is certainly something that is very real, but it also feels like a label that is given when every other possible illness has been ruled out.

My diagnosis came about in the autumn of last year. For months my depression had been getting worse and I was so, so tired all of the time. More exhausted than I think I had ever been. My legs hurt, just from walking short distances or after walking up the smallest of hills – if felt like the muscles were too short and so therefore they stretched and pulled. I had constant headaches, my shoulders ached and my hips felt like I had been running miles every day even though I hardly had the energy to get showered and dressed, even my fingers ached. I had fought depression before, I had been through blips and come out the other side… this, was different.

I went to my doctors and they ran blood test after blood test. The first thought, as it always has been my entire life, was that I was anaemic; my blood wasn’t strong enough to carry the oxygen around my body – this would explain the tiredness and the muscle weakness. They ran a full blood count; I expected to be put onto iron tablets like I had countless times before. It came back normal…

Oh.

So then the tests ramped up a little. Thyroid function, diabetes, liver and kidney function, folate, B12, Vitamin D… nothing. I was medically very healthy. The only thing that was discovered amongst all of these tests was a condition that I had never heard of called Alpha Thalassemia, a genetic condition which has been passed down via Middle Eastern, African, Asian or Mediterranean blood. Because of its origins it is relatively uncommon in the UK and being in the Alpha form (as opposed the Beta) it is kind of something that is just… there. It’s in my blood, so has always been there and therefore would not be causing this sudden and unexplainable pain.

There was one very clear day that I remember. I had gone to the surgery for a catch up about my mental health and to get my latest test results – which were, clear. I got home and I felt like just giving up, giving in. My depression symptoms were worsening, I had this constant pain and I hated the thought that it was a symptom of my depression that was only just coming to light. Depression is cruel in its vagueness – when I know I am in a blip, I don’t know if it will last hours, days, weeks or months. I don’t know if it will make me unbearably sad, or numb, or frustrated. It’s a guessing game as to what it will steal from me each time – my ability to focus and read? My confidence? The last remaining shreds of energy I have left, or perhaps my ability to express myself – either verbally or through writing? Sometimes I don’t even know what has brought it on and there are times when the sunlight filters through and I feel myself reaching the peak of my mountain and I have no idea what has saved me, this time. I couldn’t bear the thought of this pain being yet another unknown, something that would come and go seemingly of its own volition. I was done; I had no fight left…

However, I was off work. My manager was very lovely and very understanding – but decisions needed to be made. I couldn’t afford to not work and I couldn’t face running the gauntlet with the DWP after my previous experiences. I also knew that I wanted to work, work for me is very hard but I know that ultimately it does help, in many ways. So, off I popped again to my (very patient) doctor.

He spoke to me about my symptoms and where the pain was centralising. He had me stand and he pressed points upon my body to see how tender they felt – namely my shoulders, my hips and my lower legs. We spoke about how exhausted I was, how my symptoms were always worse in the morning and how there were times when I couldn’t think straight or comprehend even the simplest of things… I had all of the symptoms (minus the IBS, silver linings and all that…) He diagnosed fibromyalgia.

Afterwards, I felt a strange mixture of relief and grief. My biggest fear was that I wouldn’t be able to climb mountains (real ones, not metaphorical ones) or go on the long hikes through the woods and along the coast paths that my husband and I enjoy so much. I worried that it would get worse as I got older, that this pain would never, ever go away. But, I finally had a name; I had a reason for all of this pain and torment over the last few months. It was a breakthrough, of sorts.

The following few months saw me having to come off of the current anti-depressant medication that I was taking – in my doctors words ‘ depression causes exhaustion, fibromyalgia causes exhaustion and these are a sedative, no wonder you are tired!’. The plan was to go onto Duloxetine, an ant-depressant that would also treat some of the pain symptoms associated with fibromyalgia. I decided, after the hell that was withdrawal, to see how I was without any medication for a few days, then a week, then two. That was seven months ago.

I take supplements to manage my conditions now – it’s my own personal choice and I do believe that pharmaceutical medications can play a very important part and should definitely not be disregarded. But I had been down that path, I was curious; I just wanted to try something else for a while. It’s not to say I will never take them again – I have a box of Duloxetine at home and I have Temazepam in the drawer by my bed for times when my mental health really takes a nosedive.

Currently I take CBD capsules, I take turmeric, vitamin D, St Johns Wort and 5-Htp (at opposite ends of the day) I also take cod liver oil and a tablet to help my gut health. On bad days, I take some ibuprofen or an extra dose of CBD and no, it doesn’t always work. Some days the pain in my legs, arms, or fingers is unbearable. Some mornings I wake up and I can hardly lift my head off of the pillow. There are days when I feel numb, or that all I can do is cry.

Depression still knocks me off of my feet, fibromyalgia is still there. Sometimes I have the weirdest sensations within my body– I will be walking along and my legs will feel like instead of muscles and tendons, I have twisting iron rods. I will have sudden numbness, or tingling sensations. Parts of my body will suddenly feel cold and I cannot regulate my temperature at times. But… I can function, most days.

Being off of medication has forced me to take notice of my symptoms, there have been times when I have needed and welcomed medication in order to survive, and I highly doubt that I would be here today if I hadn’t been put onto anti-depressant medication nine years ago. But now I am at a point where I know it is there when I need it, but, I can manage my symptoms holistically for the time being. I meditate, I eat well, I take hot baths and I get frustrated at the small amounts of exercise that I can do. If my mood is slipping I try and determine why, or I get out into nature, or I write. I am blessed that I am able to do these things at this stage in my recovery and I would never, ever shame anyone that cannot. Depression, anxiety and recovery are different for everyone and I cannot stress this enough: medication is a life saver. I came off with the help of my doctor and if I need to go back on it will also be with his guidance.

But fibromyalgia… is hard. It’s hard when it reminds me of my body’s limitations; it’s hard when I feel exhausted by doing the things that I watch other people do with no problem at all. It is thought that fibromyalgia has links back to childhood stress and trauma, that somewhere during these incidents, our minds learn to interpret pain signals differently – there could be something in this, but a quick Google search will bring up all sorts of different ‘causes’ – genes, mental health, lifestyle, gender… it all plays a part. It is complex, like many of these ‘unknowns’ and once you start unpicking it, the thread begins to unravel and I very often find that I am left with more questions than answers, especially once the ‘brain fog’ kicks in.

If anyone has the answers, please let me know.

Until next time my loves ❤ x

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The Perils of Writing What You Know (& The Perks)

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This already feels like a bit of a weird post, so bear with…

I have been blogging now for just over a month but I have been writing for years, I’m 34 and I think I wrote my first (questionable) piece of fiction before I entered my teens. I have always enjoyed writing, putting words down onto paper; creating new worlds and characters to inhabit them. Even when I am not writing, I am imagining; whether through the words of someone else, or just by myself. Reading and writing has always brought me great comfort, even in my darkest moments.

A few years ago, I joined a site where I could be completely anonymous. The nature of the site wasn’t based upon writing, but I posted my words there nonetheless and people liked them! This was the first real validation I had received outside of close family and friends. I wrote fiction and I also wrote about my own mental health – and I received comments and loves and private messages thanking me for being brave (when I felt anything but). People commented on how I had helped them, or how I inspired them. I received support on my bad days and on my good, I was able to encourage and support others. There was a nice little community feeling and for a while it was fantastic. The Blurt Foundation posted a series of Instagram ‘prompts’ – initially for pictures to be posted on the platform, but I shared the list on this site and people joined in with their writings, sharing stories of their own struggles with mental health with complete openness and honesty whilst supporting those that had also decided to join in. New friendships were formed, it was a really positive experience and it got people talking about mental health which is so very important.

However, for reasons unrelated to writing, my relationship with the site was never a completely comfortable one. On one hand, the anonymity allowed me to be completely open, but in being completely open you can become quite fragile. There were times, when being on the site consumed most of my time, there were relationships formed there that weren’t entirely healthy and there were times when for my own mental health I needed to step away. This was a pattern I got into throughout the years, but last year I stepped away and I never went back.

Around the same time, I also had a really difficult discussion with a family member regarding the therapy I was due to start in the winter – something that I had written got brought up in this conversation and I had the overwhelming sense that they believed that writing about my experiences and then sharing it was wrong. For months after that, I didn’t write – I couldn’t write.

I had not only lost my place to share it and feel connected with people, but I had also lost my confidence. I joined Fiverr briefly and wrote short stories for people, but there was no real pleasure in it, I wasn’t writing anything that felt true to me. It felt empty and hollow and when I got commission emails through I felt deflated, where once, I would have felt excited.

I did start the therapy though. On my second session I took my therapist a folder full of things I had written over the previous ten years – not all of it, but a carefully curated selection. I think anyone that has been to see various doctors and therapists can understand the frustration of going through the same (sometimes very difficult) stories. In my third session he told me how impressed he had been with some of my writing, he also asked me who I was writing to? I didn’t have an answer for that.

The sessions continued over the course of the next few weeks and in one of them I told him that I hadn’t written anything for months. He took this in (as therapists do) and then about twenty minutes later he asked me what my dream was, what my ideal life looked like.

“Well, I wouldn’t have to go to work…” The words escaped my lips before I had even really thought about them. Work is a weird thing for me; it is a challenge every single day. Not because of the work, but because of the toll it takes on my mental health. It is a catch 22 – I have written about it briefly here – but I know that ultimately work is healthy.

“If you were a writer, you wouldn’t have to do the job you do”

I laughed at the prospect, a writer! I hadn’t written anything of note in the last four months. “I’m not a writer…” I said quietly. “Writers write.”

You write! I was blown away by some of the things you wrote, there is real talent there…”

“Was.” I corrected him. “There was. I don’t know what to write any more.”

“Then write anything. It doesn’t have to be mind blowing, it doesn’t have to be heartfelt, it doesn’t even have to be shared. It can just be words, on a page.”

I went away and mulled this over for a few days, Friends gave me encouraging advice but still, blank screens and crisp white pages gave me the shudders. I had heard of a journaling challenge created by Michelle Chalfant who I had been following on social media after discovering ‘The Adult Chair’. It was a month’s worth of prompts designed to get you thinking about your emotions, your triggers and your reactions. I had downloaded them and looked at them briefly – but the first one, was simply ‘You’. That was pretty daunting…

I considered setting up a completely anonymous WordPress blog if I was going to do this journaling challenge. I didn’t really know anything about WordPress but I figured it couldn’t be that hard; it also gave me a good excuse to procrastinate, I was absorbed in fonts and colours and themes… writing? Ha!

But one day, I knew I couldn’t put it off any longer. So I started on the first prompt… and after that first initial paragraph, it flowed. It flowed with honesty, it flowed with heartbreak and beauty and all of those things that makes writing so satisfying. But it was honest; very, very honest. I couldn’t put it online, not where people would actually read it.

(I have covered some of those very honest subjects since, but all in one go, it was a little overwhelming.)

I also realised very quickly that I didn’t want it to be ‘a secret’. So, I went through some older writings and posted them on my blog. I made an Instagram page, I made a Twitter account. I linked my Instagram to Facebook and invited friends who I knew would get it.

I had a blog…

Shit, I had a blog. I would have to write stuff! On one hand, this was super exciting, I finally had a place to share my words again and the people that had read what I had posted so far were very encouraging. My friend had also decided around the same time to set hers up too, and another friend that had not long finished uni was making noises that he wanted more of a presence online to promote the nutrition work he was now qualified in; we went and had breakfast and joked that we were becoming ‘influencers’ as we snapped pictures of our breakfasts and talked filters and hashtags, before deciding that we wanted to create a post together about the links between mental health and nutrition. This all felt really good, really positive. I had written some new stuff, I was really enjoying the process of writing and sharing it again.

I think the act of sharing it, for me, is very important. I don’t fully know why, but it feels like it gives the writing a sense of purpose – and especially with it being largely about mental health, that purpose is all about demystifying a topic that is not talked about enough. To have a mental health condition, any mental health condition, can be terrifyingly isolating. Over the last few weeks, I have begun to realise that the answer to my therapist’s question, was me. I was writing it to me, but not the me now; the teenage me who faced bullies every day and didn’t know how to fight back, the me who felt I had let everyone down by not being ‘strong enough’ or that ‘being too sensitive’ was a huge character flaw. I was writing for the younger me, the child me, the teenage me and I was also writing for the adult me who ten years ago forced herself into work every day whilst surviving on nothing but coffee, extra strong mints and insomnia.  I was writing for the girl who was so terrified to put food in her mouth that impassable, yet invisible, lumps formed within her throat. I was writing to a woman who always felt cold, always felt scared, and always felt overwhelmed. I was writing to the person who didn’t know how to get all of these words out, to the person who had all the words but they formed an incomprehensible, jumbled mess within her mind. I was writing to the girl that just needed comfort and that needed to feel less alone – because I knew that even though it felt so incredibly lonely, there were thousands upon thousands of people who felt the way I did.

I read some of my older posts with a view to sharing them, and I wept. There was so much pain, and also so many times where it sounded like I had it all figured out – without having the foresight to know that another blip, another illness, a difficult workplace or new anxiety was around the corner. I read some words and felt embarrassment and I read others and felt awe that even in the midst of a deep, dark depression, I had written something that had encapsulated it all so precisely. I thought of sharing some on my blog and I thought of who would read it… the words were too honest.

My mood was slipping, there were days when it all felt too much; too overwhelming…

I didn’t know why, do we ever know why with depression? It could have been a number of ‘logical’ things; I am still, seven months later, adjusting to life without medication and trying to treat mental illness and fibromyalgia holistically (I do not have anything against conventional medication and I will be writing about this in due course), I have been more sociable lately and that, whilst lovely, always makes me very tired which makes me more prone to low mood. I am still in therapy, which can be very difficult at times. My dog is sick with an ongoing and seemingly undiagnosable illness… things mount up, but of course it really could just be that I was going through a blip and it would pass.

Or, it could be that suddenly I was being open about my mental health again, and honest – not only with my words, but also with my feelings. I wasn’t just bumbling through, carrying on regardless, I was thinking about them because I was writing about them. I also was beginning to follow other mental health bloggers on Twitter and Instagram, and whilst those communities are wonderful and supportive, it is all there.

It is, like many things that surround mental health, very contradictory. We need to talk about it, we need to get our voices and our stories and our support for each other out there – we need to be able to say when we are struggling and we encourage others to do the same, but in doing that it can all feel very… overwhelming. It can feel overwhelming for those of us that share because suddenly all of these thoughts that don’t feel like our own at times, but that definitely come from us are out there and it’s not just strangers on the internet that read it – it’s our friends, our parents and sometimes even our employers. I have spent my entire life feeling like I am too… sensitive/open/honest/experimental/generous/open minded/empathic and like I should always reel my behaviour in – and therefore sharing how I feel can at times be very, very difficult; as soon as it’s out there, I want to snatch it back in. I am an introvert by nature and pretty quiet and softly spoken; I am not one to get up on my soapbox or get in to big debates – but I do believe that conversations about mental health are so very important and as someone who has been there, done that, got the t-shirt and who keeps taking it back for an exchange, I need that to all be for something! If that ‘something’ is helping just one person, then I have done what I set out to do.

So… being a mental health blogger with a mental health condition (or three), is hard. It’s hard because amongst all of it you are on your own journey and you have your own demons to slay. It’s hard because you know only too well the pain that others are going through and sometimes, that pain can trigger your own. It’s hard because it means being open about an illness that feeds off of isolation and it’s hard because that openness isn’t limited towards strangers.

But it’s worth it.

It’s worth it because it starts conversations and helps people to feel less alone and less scared. It’s worth it because it can help me to believe that all of this pain was for something, and it’s worth it because it means I get to write about something that I feel passionate about once again. I have learnt a lot in a month; I have learnt that in general, my confidence soars when I am doing something I love. That not only do I write passionately about mental health, I can also talk passionately about it to people, in person. I have learnt that in sharing my stories it encourages people to share their own and to have difficult conversations with loved ones… but, I have also learnt that there is a flip side. The flip side happens when I spend too much time on social media, or too much time analysing what I have written. It happens when I follow people back without really looking at their profile and then wake up to a highly triggering picture, it happens when I forget to take care of myself amongst it all.

Put your own oxygen mask on first, before helping others

I have learnt that there are days when I am going to have to remember that one.


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