Progress report

Progress report

It has been a long time since I’ve written anything, and a recent email from a visitor to my blog made me reflect on how far I’ve come, and what it’s taken to get here.

Firstly, I am probably still mad, but I sure as hell am not as mad as I was. This can only be a good thing. This really hit home to me the other day when I put the bins out and didn’t even think about it: at my worst that would have resulted in tears, and a shower and full change of clothes. Which is nuts. But at the time it really, really felt like that’s what I needed to do to gain a tiny bit of respite from the shouting “what-ifs” of my OCD. And that if my partner forgot to empty them and left me with the chore he was an unfeeling evil bastard. He really isn’t. He’s just shit at remembering to empty the bins sometimes.

My eating has gone a seriously long way too. I cook again, and I enjoy it. I’ve put weight back on. I’m eating a far larger variety of foods, although I have reverted to vegetarianism which is how I was brought up, but those reasons are ethical and not connected with any fears about “safety”. I manage to bake cookies with my kids and not want to run away; on occasion I’ve even eaten what they’ve made! I still wash my hands a lot, probably too much, but I don’t tend to obsess over it, it’s almost automatic, and I don’t get overly distressed if I’m not able to.

I have learnt that if I give in to the first OCD thought of the day (usually something like “don’t use that cup, pick another cup”) it will just snowball and I’ll have to struggle against it shouting at me all day, whereas if I just plow through and ignore the first little whisper it usually remains quieter in my head.

I got this far mainly thanks to the recognition by the therapist I was seeing that CBT alone was NOT working. When you are literally beside yourself with fear for the majority of your day you just cannot use the techniques it requires of you. I am so lucky that she was also trained in EMDR and trauma, and so was able to look at me and see someone not with ‘depression and anxiety’ but who probably had complex PTSD with a comorbidity of OCD, and put together a course that tackled those traumas that I experienced that just had not been processed correctly yet. Most importantly, she was brave enough to fight her managers to make sure I was given as much extra time as possible. I should have been discharged after twelve sessions. She saw me for a year.

I was in a state of hyper vigilance as if past traumas were still happening to me. We combed through my life story and isolated a number of traumas, both physical and psychological, that we thought might be at play. We were able to group a bunch of them together and try to tackle them en masse, and gave particular focus to ones we thought might be ingrained the deepest. We tackled my experiences of sexual assault. Childbirth. Illness. My parents separation. All fairly major stuff. At first I felt I was just going along with it: I was so desperate for something to “cure” me I tried to ignore the “this is nonsense” thoughts in my head. But after a few weeks my body felt different. My head felt clearer. We’d work through events and I would full blown break down and sob, being right back there but simultaneously where I was, feeling pity or rage or sadness or a mix of everything. In one particularly memorable session I literally felt my body travel through time. I moved from being an angry, thoughtful, frightened, ashamed, defiant fifteen year old girl and shifted all the way through space and time until I was an exhausted but proud and hopeful thirty one year old mother of two. I physically felt myself sitting on my chair as a woman. This probably sounds nuts but I think that was the first time I had felt really, actually there. Where I was. Who I was.

I will do a longer post about trauma and my experience of EMDR soon but suffice to say, pretty rapidly I felt, and other people saw, a big change. I was still anxious, but in a far less crazy way. I was able to challenge my OCD and it didn’t seem insurmountable. I might have been agoraphobic but I could will myself through a trip to the supermarket or a friend’s house and come out feeling better about myself, not worse.

After years in the darkness, this summer really did feel like coming into the light. Sadly, therapy was abruptly ended in June (my scores were too high for the NHS to continue my therapy, which sucked, because you need help learning to be well, consolidating, convalescing, not just to stop being ill). I managed to get a job and challenge myself in ways I could not have imagined just a few short weeks before. I attended family events, visited my eldest’s new teachers and took her to her first day of school. I quit my job and got a better one. I started enjoying just being.

Now this is not a fairy tale. I am not cured. I still have a long way to go until I’m living the kind of life I really want to. I’m happy to take baby steps there. Most importantly,  I’m learning to take care of myself, to know my triggers, but also to cut myself a break. Right now I’m on the middle of what you might call a relapse. I started a new job, so has my partner. My kids and I have had horrible colds and now they have chicken pox. I’m sleep deprived. I had been coping with the anxiety of my new job by not eating while I was at work, which meant I was malnourished. I felt like I’m failing at everything. All my old doubts and self criticism and negativity and frustration was seeping back in. And I thought to myself; “I’m pretty sure most parents would feel like this in this situation: this isn’t about you being a shit, mad, mother. This is about the reality of sleep deprivation and vitamin deficiency.”. And take responsibility for making sure I make an effort to get early nights, eat meals with as many vegetables as I can cram in and be honest with the people around me that I feel like a want to cry or punch something and not to take it personally.

This is the best I can do right now. And I think that’s ok.

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.

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.