Iatrogenesis

Iatrogenesis

I know I’m not the only one who dreads a visit to the doctors. I generally dislike GP surgeries, although I’m not phobic of them in the way I am of hospitals, but it isn’t the sitting in an overly-warm badly decorated waiting room surrounded by sick people, or even the mind boggling rudeness of the average receptionist that fills me with dread. It’s the fact that I always, always end up feeling worse upon leaving than when I went in.

I’ve been consulting my GP (ha! Actually many because it is a group practice and I have never successfully managed to book successive appointments with the same doctor), primarily about the significant weight loss I’ve undergone over the last year. I am now underweight by some margin and look and feel like death. I’ve had a bunch of blood tests to rule out anything nefarious and thankfully, my body doesn’t seem to be the cause: I had been worried that my thyroid had been playing up again. I stepped on the scales again and my weight was the same it had been four weeks ago – that it hasn’t gone down further is a reassuring sign.

While that is a relief, it also means that my weight loss is tied to either my anxiety, or breastfeeding, or most likely both. I have been calorie tracking and I do eat ‘enough’, but probably not enough if we factor in lactation and the high metabolism that comes with anxiety. 

I have been receiving CBT with an aim to challenging the anxiety and OCD since June. I will probably only have one or maybe two more sessions. My PHQ9 and GAD7 scores show that I haven’t made significant progress, and while the tools I have been learning (or rather relearning as I’m no stranger to CBT) are useful,  they haven’t made a big difference yet. So I ask my doctor, what can we put in place for when these sessions end? 

His response was firstly to explain CBT and anxiety to me like I didn’t understand what I had been experiencing, and then summed up by saying that I had to wait until I had a crisis and then request further therapy. I pointed out that I have two very young children and that I was not willing to let myself get to that point, especially keeping in mind it had been a six month wait to get this lot of therapy even though I was supposedly a high priority patient. 

‘Hmm’

I sigh and bite the bullet – does he think it would be sensible for me to perhaps restart on an SSRI? I had not taken any since being pregnant with my second child, but now she is well over a year old I have less misgivings about potential effects on her. Oh yes! That’s a good idea (it was by this point clear he’d not actually looked at my notes at all, and knew nothing of my long history with mental illness or even if I was taking medication). He then tried to put me on a different SSRI than the one I had taken successfully before but I managed to persuade him to stick to the old drug as I know I have almost no side effects on it after the initial few weeks. 

When I ask for a note to send off to the DWP to make sure my ESA payments continue for the next four weeks, he pouts, and doesn’t look me in the eye for the rest of the appointment. He requests I book another appointment in four weeks to assess the SSRI dosage. He doesn’t say goodbye as I leave the room.

At no point did he attempt to make any kind of human contact. No, how are you? How are you finding it? What are your worries? How are your kids? A prescription and an instruction to call the crisis helpline if I relapse further once my therapy is cut off. 

I left the surgery feeling like the biggest pile of shit. I was more convinced than ever that I was somehow going to have to fix myself because no medical professional (therapists not included) I have seen has seemed remotely interested in my actually getting better – they just want me out of their hair. It’s like they know it’s hard, that it’s outside of their comfort zone, so they don’t even extend the courtesy of trying. Take the pills and bother the non-existent MH team. This can’t be because they don’t care. I think they are probably good people. But because they know there’s fuck all they can do they just put a barrier up to protect themselves. 

But it left me feeling entirely worthless. Like I was totally on my own. I’ll take the meds but I know from before they just leave me pretty vacant – they don’t alter my thought patterns or anxiety symptoms. If I’m hung out to dry with no access to further therapy I am really scared about how I’m going to get through the winter.

Panic and parenting

Panic and parenting

I thought I’d share a small example of how it can be hard to be a parent while battling a mental health condition that means you see danger everywhere and feel paralysed by the sense of responsibility for keeping everyone safe.

I’m still working through this particular issue as it’s still fresh so I apologise if this post is a little rambling. And it’s by no means serious in the grand scheme of things: I’ve no doubt there are parents who struggle with far more serious battles on the day to day. All respect to them.

I am terrified of contagious illness, particularly sickness bugs or food poisoning. (Weirdly no issue with bloodborn illness, in fact I used to volunteer with people who were HIV+, and that didn’t freak me out at all). I am particularly frightened of my children getting sick. I know, rationally, that kids get sick, and most of the time, no real harm is done and their immune system is even strengthened as a result. But I cannot stand the thought of it. 

I had to fight against my fear to enroll my eldest at a nursery. I know it’s likely that she’ll pick something up from it, but that the risk is far outweighed by the positives she gets from her time there, the way it bolsters her socialisation and education. She’s been attending a couple of days a week for just over a year, and so far picked up nothing more serious than a nasty cold or cough. But every time I drop her off I feel a sense of dread. 

This morning, while dropping her off, I overheard the nursery manager complaining that she had a few staff members off sick with a sickness bug. A fellow parent piped up that his daughter had been violently sick all day Saturday. He’d brought her to nursery regardless. It was all I could do not to grab my daughter and pull her straight out of there and bring her home. Perhaps I should have.

For the last three hours I’ve been sitting and ruminating and catastrophising. Should I go collect my daughter early? Am I irresponsible for leaving her there? If she gets sick, will this be my fault? What if we all get sick? My partner has an essay due this week, if he gets sick and isn’t able to hand it in that will be my fault. We have couples counselling booked and have waiting months for the appointment, if we miss it because we are sick I don’t know if we’ll be able to get another and we will break up and it’ll be my fault… etc etc.

There’s a danger that I will stay in a het-up state of high anxiety over this for days. Possibly weeks. I’m frightened that I will stop eating and avoid leaving the house as a result. And if we do get sick – well I just don’t know how I’ll cope. It was a bout of food poisoning that caused my mental health to relapse back in January and I’m only now starting to get ever so slightly back on track.

I’m writing this down in part to get it out of my head – and by reading it back can see that some of my thinking is twisted. But I also wanted to share it because, as parents and responsible adults, we don’t talk about things like this, the little fears, the creeping insidious doubts, that can threaten to derail you if you’re already vulnerable.

I know I can’t keep myself and my kids wrapped in cotton wool – that my own anxiety limits my own life and enjoyment significantly and I fight so hard to try to limit its impact on my kids. It’s getting harder as they get older, but ultimately they are the spur for me to keep going and continue to challenge myself. I refuse to have this fuck them up too.  

Back to basics 

Back to basics 

Yesterday I wrote about how the last couple of months have been pretty grim. I’ve been functioning day to day, but barely, and have found myself plagued by intrusive thoughts and occasional ‘suicidal ideation’ as the shrinks would call it. Scary stuff when you’re a stay at home mum to two small children.

But, oddly, the return of such terrifying thoughts has been enough of a kick up the arse to get me to take my mental health seriously again. So today I’m going to share a few of the ways I’ve gone back to basics with self care and it seems to be (s…l…o…w…l…y) helping to lift the cloud.

  1. I visited my GP. I didn’t tell him about my suicidal thoughts. This was probably a mistake, but I didn’t feel strong enough (I’d never met him before for one thing). I have a therapist I see regularly who is aware of them, so I’m not trying to deal with them alone. Instead I talked to him about the physical symptoms I’m experiencing. My weight has plummeted leaving me with an ‘underweight’ BMI for the first time in my life, and while I do struggle to eat in a balanced way, I don’t feel the weight loss is warranted. I’ve previously had thyroid problems, which can cause mental health symptoms like anxiety. Malnutrition, more specifically certain mineral and vitamin deficiencies, can also completely mess with your mind. So I wanted to be sure that I wasn’t trying to battle my mental health alone when actually, there might be a physical cause and hopefully, solution. I’ve a blood test booked and should know more in a week or two.
  2. I let people in. When I feel really low I just want to hide. I feel ashamed of my feelings, and don’t want comforting or sympathy. But that just compounds the problem, and drives me further into my own head. So I’ve made a considered effort to accept invitations and reconnect with friends and family. Small things like a long walk and trip to the pub with my dad, a visit from my godmother, a play date with my best friend and her children. And I’ve talked about how I’m feeling, and received kind words and advice (useful or otherwise, it was well meant). And I’ve listened to how they are, and connected with something outside of myself.
  3. Planned my days. This is so important for me, especially on those days where my eldest isn’t at nursery and I’m alone with the kids all day (my partner works 12 hour shifts and leaves before the girls are up and gets home after they’re in bed). I write down a schedule for the next day each evening. I don’t have times, just an order of play. I stick it to the kitchen cupboard and me and my eldest discuss it over dinner, and I take ideas from her (would she like to do some painting? Baking? Exploring?). Then the next day I know where I am and so does she. It helps me to avoid getting stuck in a mind-trap of ‘Oh my god there’s so much to do I don’t know where to start’ which so often leads me to feel useless and overwhelmed. And avoids her being stuck in front of the TV for hours because she knows that there are other fun activities planned.
  4. Simplify my culinary expectations. As you’ll know if you’ve read my blog previously, I have a particularly shitty phobia (cibophobia) which makes cooking and eating really stressful and difficult. I know I’ve got to eat, I really want to eat, and I really enjoy cooking when I’m well. But when I’m unwell, like now, I invariably freak out while cooking and more often than not don’t end up eating what I’ve prepared. This is costly and depressing. I realised that far too often I expect too much of myself and decide that I will try to cook like I used to (complicated recipes with lots of ingredients). This leaves me wide open to being blindsided by insidious doubts. So I found a few cookery books with bare-bones recipes, using very few ingredients (sometimes as few as three!) and have been cooking exclusively from these.   It’s really made a difference and the food has been surprisingly delicious! And I’ve tried to keep my fridge full of good snacking food I can grab when I notice my blood sugar dipping.
  5. I claimed my benefits entitlements. Money is very tight. My partner works 30plus hours a week, and has just begun a higher education course in the hopes of progressing his career. I was feeling intense pressure to find work (I was made redundant just before the birth of my second daughter) although I’d no idea where I could find local work that paid enough to offset childcare costs. I was so exhausted (am exhausted) and just couldn’t imagine having the energy to work on top of everything else I’m doing (or failing to do) right now. My therapist told me straight: ‘You are ill, you shouldn’t be trying to find a job right now, you should be convalescing’. So I bit the bullet and put in a claim for ESA. Hopefully it will start coming through in a few weeks and just take a bit of the pressure off while I continue to focus on getting on a more even keel.

Just writing this post this morning has helped to remind me to keep all this up, that such simple steps have made a big difference almost overnight. I still feel like crap – but slightly more hopeful crap.

We’re (not) all going on a summer holiday – agoraphobia makes motherhood extra hard

We’re (not) all going on a summer holiday – agoraphobia makes motherhood extra hard

Today I packed my three year old daughter’s suitcase for her summer holiday. She helped me pick out which clothes she would like to wear, which books she’d like to read at bedtimes, which toys she thought would enjoy the trip. I packed her toiletries, nappies, medicines (just in case), some sticker books, pens and pencils, and snacks for the journey.

Then I waved her and her father goodbye as they drove off, and my heart broke.

We don’t have any money. After being made redundant during my second pregnancy last year, I’ve been a stay at home mum to my two girls, while my partner has been working as a nursing assistant, which pays a little above minimum wage. We knew we wouldn’t be able to afford to go away any time soon. My partner’s ex-wife and her husband had booked a holiday home in Norfolk, an hour and a half away from us, and were planning on taking his eldest daughter who is seven and their new baby girl away for a week, and very kindly invited us along. We are very fortunate that relations between all of us have always been warm, and I was very touched by the offer. I know how much my eldest loves her big sister, and they would have a blast on holiday together. But I knew that, for me, the trip would be nightmarish. Away from home, daytrips out to crowded, unfamiliar places, little privacy, among people who, as lovely as they are, have fairly old-school views of mental illness. I agonised over the decision, but made my mind up not to go. Me and baby would stay home and my partner would take my eldest.

I’m trying to rationalise the decision by telling myself that the danger would have been that if I had forced myself to go, my anxiety would have been so acute that it would have risked spoiling the trip for everyone else. I try very hard to hide my own anxiety from my kids, to make sure that they don’t pick up on it, and to ensure that they still get to the experience fun, exciting stuff being a kid is all about. It was better, I thought, for her to have a great time with her dad, sister and extended family, without me bringing everyone down. Kids are far more sensitive, far younger, than we tend to think: I suspect she would pick up on my discomfort and it might sully her own perceptions and experiences.

I’m hoping to use the time while they are away to do some back-to-basics self care: eat as much as I can, nap when baby naps, get out for walks, maybe see some friends. All the stuff that seems to go out the window when I’m trying to cope with running a household of four – it seems far more doable when it’s just me and the baby. Maybe by the time they return I will be a little braver and I can make up for the lost time by taking the girls out myself.

This illness (or whatever it is) feels like it has sucked the very core of who I am away from me. I am not by nature a timid person. I traveled a lot, by myself, in my late teens and early twenties: North Africa, Asia, Australia. I moved to big cities. I took risks, and while there were some hairy moments, I generally had a blast. But it feels so different now there isn’t just me, but two extra parts of me out there in the world. It’s like my responsibilities have just crushed me: I am full of self doubt and fear and panic. I want to do the best I can for my children but when I get outside my comfort zone (an area which feels like it has shrunk to a few cubic meters), I experience such intense anxiety I can barely focus. How can I possibly keep them safe if my brain has turned to grey, spikey clouds (a weird description but that’s what it feels like), and my body is urging me to find the nearest toilet?!

So I’m going to bed this evening feeling like a failure – it is my job to be alongside my daughters as they experience the world and the fact that I’m just not brave enough right now makes me feel like a sack of pathetic shit. I know that her father will take excellent care of her, and will be the kind of fun, spontaneous and joyful parent that she needs. Meanwhile, me and her youngest sister will have a quiet but enjoyable time close to home. I hope it will be restorative, healing maybe. I hope so. But I don’t think the guilt I feel will go away any time soon.

I don’t have an eating disorder, I’m just terrified of food

I don’t have an eating disorder, I’m just terrified of food

I exhibit a number of behaviours which have similarities to those shown by someone with an eating disorder. I often eat alone, furtively and super-quick. I might stop eating something after a few bites and throw the rest away. I struggle to sit down and eat with others and will literally do anything to avoid having to eat out, including at the homes of friends or family.

I don’t have an eating disorder. I have no issue with my appearance, my weight, and I don’t use food as a comfort. I don’t purge, or binge, or calory count, or over- exercise. I have never done any of those things, and I thank my mother in particular for modelling a healthy attitude to food and body image for having escaped the horrors of an eating disorder. 

I have cibophobia (sometimes known as sitophobia) which translates as a fear of food. Not that food might make me gain weight, but that it might make me physically unwell. I have had this phobia, at varying levels of intensity, for at least ten years, although I only discovered it had a name very recently. It’s an odd one, because this phobia is usually triggered by some kind of childhood trauma or actual food allergy. I am quite physically robust, was rarely sick as a kid, with no known allergies. But I did get an awful dose of food poisoning on a trip to India back in 2004, which I recognise was probably the original trigger, even though the phobia didn’t start to show itself until some years later. And every time I’ve been unlucky enough to get (thankfully milder) bouts of food poisoning subsequently, it’s usually triggered a relapse into heightened anxiety and OCD.

It’s very hard to explain this phobia to anyone – doctors and therapists do tend to jump to eating disorders and I have to work quite hard to convince them it’s not the same thing. I also have to explain I do not have a fear of vomiting (emetophobia). Sure it’s not pleasant, but I didn’t freak out when I had morning sickness during my pregnancies for example. It’s a fear that by eating something unsafe or contaminated, I might then be poisoned, and be so ill as to be incapacitated, and (here’s the crucial bit I think) helpless. For me, the phobia has spilled over into OCD behaviours and an acute fear of contamination by other means too (the very word ‘norovirus’ can trigger a panic attack, and I watch people around me intently to check their own hand hygiene standards). My absolute nightmare scenario would be for my entire family to be struck down by food poisoning / similar at the same time and somehow I’d still have to care for everyone else while coping with my own illness.

To avoid this happening (to keep myself and my family ‘safe’) I can go to pretty extreme lengths. Firstly, I often heavily restrict my own diet. If I’m having a bad week, I might only eat a specific brand of cereal, with perhaps some pasta and cheese and maybe bananas. If I’m feeling more myself, I will attempt to cook a proper meal for my family (a painstaking process with lots of checks and double checks and hand washing and fluctuating anxiety levels), but will often find that when it comes time to eat it, I chicken out and don’t serve myself a portion, lest it somehow despite my best efforts be unsafe. My thinking here is, if my family does get sick, at least I won’t and so will be able to look after them. Sometimes I have wonderful days where I manage to eat well, healthily, alongside the people I love but they have been a rarity recently.

It’s a hard phobia for my loved ones to understand because the rules seem to change on a near daily basis. On a really bad day, I might struggle to eat more than toast (and even then chances are I won’t eat the bit of the toast I’ve touched). On an OK day, I might eat fairly normally but freak out because my partner has decided to make himself a chicken salad (I panic that he might unwittingly spread salmonella everywhere) and then spend an hour cleaning the kitchen. On a good day I might actually cook a roast chicken and eat some of it, but chances are I won’t go back for seconds even if I’m still hungry as, to mitigate the ‘risk’, I’ll limit my ‘exposure’. I have developed so many weird internal rules and safety behaviours I can barely articulate them to myself let alone anyone else. My partner basically has to check in with me before doing anything in the kitchen, and this is a fairly major strain on us sometimes.

This phobia really fucking sucks and is ruining my life. 

Firstly, I have been either pregnant or breastfeeding or both for nearly four years straight; my body has a high nutritional need right now and I am just not able to provide that for myself most days. I have lost far too much weight, and feel and look scrawny and ill. 

Secondly, I actually really enjoy cooking and eating when I am in my right mind. I used to find cooking a cathartic, creative experience, I own a lot of cook-books, and am actually pretty good at it (I’ve never been much good at baking though). I used to love eating out, or at friends houses, or with my partner at home after a tough day. Something I absolutely enjoyed has been spoiled for me.

Thirdly, as a result of this phobia my world has shrunk and I’ve lost friends. I can’t go out for a meal with people, I can’t even manage drinks sometimes. I avoid any situation where I might be expected to eat something, lest I either a) get sick or b) offend someone by refusing. Agoraphobia and social anxiety have sprouted from this original phobia and further compounded the issue.

Fourthly, it is very very hard work to not pass this on to my daughters. Every day I try to prepare healthy food for my family and not let on to the inner panic I’m experiencing. This is exhausting.

I’m in therapy, using CBT to tackle the specific avoidance behaviours by building a fear hierarchy and working my way up it doing behavioural experiments by way of graded exposure (this week, sandwiches!). We’ve also identified that the belief underlying this fear is that it is not OK for me to be not OK (e.g. ill) – I have to be at my best and on call at all times because I am responsible for everyone and everything, because no one else can be trusted. Ironically, by fixating on food as a way of controlling my exposure to the risk of being let down by other people, I’m actually just succeeding in making myself ill in a different way.

This is a major work in progress. There are a lot of layers to it and I’m still figuring a lot of stuff out. But I wanted to write about it partly because there’s very little out there on this specific phobia – and hopefully it might help someone else going through similar articulate their own issues and hopefully receive better help.

I’ve never met someone with this same phobia so if this rings any bells for you please do get in touch.

Things I have been frightened of this year

Things I have been frightened of this year

I’m no stranger to depression and anxiety. Sometimes a side order of OCD and agoraphobia too. I also have a very specific phobia: cibophobia (more on that story later.) Following the birth of my second child in the summer of 2016 I very nearly lost all sense of reason.

There follows a list of things that have frightened me at various points over the last twelve months.

  • Crisps
  • Supermarkets
  • Public transport
  • Doctors surgeries
  • Phonecalls
  • Toast
  • Apples
  • Touching my children
  • Other people’s children
  • Using the toilet
  • Cooking
  • Eating the same thing as someone else
  • Travelling by car
  • Having people in my house
  • Leaving my house
  • Being alone with my partner
  • Therapy
  • Takeaways
  • Spiders*
  • Meat
  • Salad
  • Ladybirds
  • My in-laws
  • New clothes
  • Library books
  • Brushing my teeth
  • Having sex**
  • Dogs
  • Reading horoscopes
  • Gardening
  • Vitamins
  • Ice cream
  • Chip and pin machines
  • Mobile phones
  • Going to the dentist
  • Cutlery
  • Conversations
  • Door handles
  • Kissing
  • Money
  • Chocolate***
  • Tea towels
  • Bedding
  • Social media
  • Melons

*I’ve been mildly scared of spiders as long as I can remember so don’t really count this one.

**It’s more complicated than just anxiety.

***By far the most upsetting fear.

Some of these fears are fairly long standing. For example, I first started to develop a fear of public transport in 2011, but living in London at the time, I pretty much had to power through it if I wanted to get to work, see friends etc. Subsequent to moving out to the sticks and being laid off, this fear has been able to sort of oscify.

But most of these things don’t scare me in a fixed, permanent way: I don’t actually know what’s going to scare me on a day to day basis. Something might terrify me on Monday but not even register with me on the Tuesday. And the fear reaction can be something as mild as having the thought ‘Hmm… this might not be safe’ but being able to make a risk assessment and override if relatively easily (e.g. eat the crisps anyway), to complete aversion and avoidance behaviours (not leaving the house/making the phonecall/eating the meal), to derealisation and withdrawal (going completely inside myself and freezing up) to full on panic attacks (nausea, not being able to feel my extremities, head spinning etc.).

I am in a near-constant state of mild panic. I spend so, so much energy evaluating perceived risks and constructing elaborate ways in which I might mitigate them but still be able to vaguely function. And I have to try my absolute best to do this in such a way whereby my children do not pick up on my anxiety, and do not live a restricted life. It is exhausting and makes me furious: I get so angry thinking about all the things I could accomplish if I use the energy I expend evaluating the respective merits of teaspoons on something worthwhile.

I’m working on it. I’m constructing fear hierarchies and trying to work through them systematically while at the same time continuing to figure out what on earth this is actually really about. It’s not about fucking teaspoons.