Tag: eating disorders

Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx

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How do you love someone who is hurting his/herself when it feels you can only watch?

WARNING: this post mentions self-harm and suicide and the point of view of carers of people who are struggling.

How do you love someone who is slowly hurting his/herself – and you wonder if actually, they’re taking their life gradually – when it feels like you can only watch?

I don’t mean how do you feel love. That’s not in question. It’s your love that aches and burns and cries inside you.

But how do you give love?

When it seems you can only watch. Watch, wish, long, weep, beg, scream, shake (you – and them?), speak but only shout into the distance, only shout up against a rubber wall that bounces your words of concern and pain and fear and help and whatever it may be right back at your heart – where they metaphorically stab you and mock you with their futility.

And the love you want to give is lost somewhere.

Your loved one get relentlessly weaker with irresistible self-consuming power. And you are powerless. Love does not force or fight and does not demand to control another person’s choices. Love can not force another person to choose the healing of their body or to choose life. The pain-and-longing part of your heart, when you love someone who’s breaking, might for a time wish it could force it, but the very centre of love knows really that it cannot be forced.

And then you cry.

Even if you cannot and do not want to make them choose, you wish you could at least penetrate the rubber wall, so that love could be heard for a little while.

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I’m in this situation right now, actually with two people dear to me, and I don’t know how to give love.

Ginny xxx

Reforming my food intake – eating disorders v changes for healing

TRIGGER WARNING: this post discusses diet, eating disorders and food restrictions.

I was back at hospital a couple of weeks ago with another bowel pseudo obstruction, with a lot of pain and bleeding. Scary. Thanks be to God this was not as serious as the obstruction I had last year. However over the past year on the whole I have had a marked increase in gastric symptoms which are part of my POTS and Ehlers Danlos Syndrome. It’s painful and disruptive. Possibly it’s also doing the rest of my body no good if I’m having inflammation or not absorbing nutrients properly.

I’ve decided to change how I eat along the lines of what I’ve read can help people with my conditions. It will involve a lot of protein, cutting right back on wheat and sugars (this will be hard for me!) and eliminating junk food. It will be quite bland at first whilst I find out what foods work for me or not. I don’t have celiacs but people with POTS and EDS can have problems with wheat that aren’t celiacs.

I’m conflicted because any strict diet, food restriction or elimination is triggering to my eating disordered thoughts and voices. Moreover I can’t deny that I’m hoping that my change in diet will lead me to get back control of my hunger, cravings and bingeing and that I’ll lose weight. I really want to sort my stomach problems but control and losing weight are hugely strong desires too. I’m overweight and repulsed at myself.

Possibly what I’m doing isn’t what professionals would think is a good idea if you have bulimia, binge eating disorder or a history of anorexia. Usually elimination of foods isn’t advised and you are supposed to listen to your body’s cues. I have no idea how to safely listen to my body’s cues. It seems to constantly scream “hungry!” In a way, am I listening to my body by recognising my gastric issues and the fact that my current eating is doing me no good? But I’m furious with myself for the binges and constantly want to punish myself. The diet that I’m going to be following will cut out a lot of foods I binge on. Will that stop my binges being triggered? I’m hoping so but I just feel I know I’ll lose control.

I’m trying to think of the changes as a long term way of eating, making it work for me throughout my lifetime, not a fad diet; also I’m trying to remember the fact my body needs this to get better.

Ginny xxx

Colouring and dark

This picture has taken me over 2 weeks to colour.

I love grown up colouring books and usually no matter how awful I feel I can still colour. It’s a way of escaping for a while. Drawing is harder and needs some part of my creativity that gets frozen by depression but colouring is different. But the past month has been terrible and I couldn’t even do that. Tonight I finished this picture at last. It’s not any good all in all. I like a couple of the flowers.

Colouring for a few minutes was about the only time today I wasn’t breaking down overwhelmed with panic, asleep, mindlessly scrolling through the phone, or lost in dissociation. One small step, maybe.

I’m so mad with myself for not being able to do the simplest tasks, letting the house go, trying and trying and getting lost after a few minutes, binge eating, boiling over with emotions… cutting off for a while… in pain if something or someone interferes with that state… only knowing how to be alone because I only know how to be left even if I desperately want saving… trapped by fear and anger at myself, just hoping to get back to numb again and not remember. Sleep.

G x

Facing how much I need to lose

Warning: this post contains discussion of weight, weight loss, body image and eating disorders.

I have lost control of my eating and my body size completely. I’m the heaviest I’ve ever been. I’m disgusted at myself, expanding and ballooning. The voices love it – greedy, pig, ugly, foul, repulsive… we’ll always know how bad you really are… images of rotten evil and greed bursting out of my skin… cut it all off, cut it out… 50 kilos. Lose 50 kilos then keep going.

It’s so much and so unattainable I let the despair close round me. It’s cold and numb first, then comes the bingeing. I don’t know if it’s a result of the despair. Often it’s a result of hunger that won’t be satisfied and demands more and more, til I get rid of it by purging til it hurts so much.

I am fat and more than fat.

I want to lose 50kg. I have the idea that then I could look at myself without so much hate and disgust and then the voices might be satisfied for a while, if only I could maintain it. Objectively I know losing 50kg would be too much and would put me in the anorexic weight range. I know losing 40kg would put me at the very bottom of the healthy weight range. I desperately want this then desperately want those 10kg more, to get rid of the fat greedy consuming thing inside me. To get rid of the evil inside me. Then I could look at myself. Then I’d have control back. Then maybe it would stop. Please. Please would it stop.

Why can’t I just do it, like I always did before? Why have I lost control?

I’m trying to be objective. Trying to think about losing 20kg first. Trying to focus on goals, not specific weight targets week by week but on good things that are coming and that will be even better if I lose the weight – going abroad in February for my fiancé’s work, being able to do more of my physiotherapy exercises, our upcoming wedding, and so on. Trying to remember that my fiancé does not think I’m disgusting or greedy or bad or anything else the voices tell me, and that he loves me and does not require me to change. Yet I have his support to lose some weight to take care of my health and that’s a wonderful help.

I’m going to try to identify specific actions I can take to stop bingeing and start losing weight.

Looking objectively, why do I think my weight has gone up out of control?

  1. Greatly reduced mobility because of my degenerative health conditions getting worse. I used to walk loads a few years ago but now I need a wheelchair.
  2. My medications – quetiapine and other daily medications I take increase my appetite and affect metabolism and cause a lot of weight gain.
  3. Binge eating repeatedly on sugary foods and other carbohydrates. Insatiable hunger. Yes I frequently purge or restrict after but it can’t get rid of everything and it’s dangerous in itself.
  4. Relying more on convenience foods because I’m not well enough to cook and at times when I’ve been really short of money.

How can I change this?

  1. I can’t exercise in the usual sense of the word but I can prioritise my physio exercises and then when I’ve lost some weight, going swimming. I’m changing my daily routine to make sure I fit these in.
  2. I can’t change my medications, at least not short term.
  3. I will not keep trigger foods in the house. At first I will greatly restrict the food I have in the house so there is literally nothing to binge on. I can’t leave the house unaided because of my health so won’t be able to go and buy more. My fiancé will help me get small quantities of non triggering foods and occasional treats only. I’m amazingly fortunate to have his help. This isn’t a permanent solution but might help for the first couple of weeks.
  4. Though I still need to rely on convenience foods because of my disabilities, I will stay within a daily calorie limit.
  5. I will research any advice I can find for coping with binge eating disorder.

How can I keep the rational part of me in control rather than whatever drives the insatiable hunger? I really don’t know what drives it. When I was anorexic I had found something that shut off the hunger, but I don’t know what it was. The disgust I felt for myself then and the disgust I feel for myself now are pretty similar. In fact I feel more disgust for myself now. If disgust doesn’t shut the hunger off, what does? I think if I knew that, it would stop me bingeing.

Ginny xxx

Anger management courses – do they help?

I’m scared that I’ve become increasingly angry and less able to control it. Maybe I never could control anger. Under my abuser’s control I never felt it, except for a very few occasions where some feeling that probably was anger exploded, always severely punished. When I did start to feel it, when rebellious feelings grew, fear of myself almost always grew stronger, and so I channeled it towards myself with anorexia and self-harm. I lost control eventually, years later, but bulimia and binge eating, overdose and cutting still did well to numb my most frightening emotions. But then, and I don’t know why, I started to scream. Rage burned and exploded and my control was gone.

I did not learn, in the therapy I undertook for my personality disorder, how to control the anger.

It may not be the first emotion that takes hold of me but every difficult, unwanted, feared, painful emotion seems to work its way to uncontrollable anger that I can’t control. I still turn it against myself but it explodes outwards as well. Dissociation possibly gives me and others some protection but my “others” can get angry too and that’s so dangerous.

Recently, someone suggested to me that I could try an anger management course.

I’d never thought of this. On one level it’s an obvious thing to try. Why hadn’t I thought of it before?

I’d be very interested to hear about your experience if you’ve tried an anger management course, especially if you also suffer with PTSD or personality disorder/s. How did you do the course, for example a self help course or taught? How did it help or not help you? Is there a particular kind of course that will help those of us with PTSD or PD?

Thank you in advance.

Ginny xxx

Going away for a break

Going away for a break

Wow. This week has been really emotional, with so many really sad tragic things happening – the Grenfell Tower disaster, two terrorist attacks in London, another attempt in Paris, another major attack in Mosul – so much pain. I desperately want to be able to “do something”. Help. Bring some hope. Bring the merciful love of our Heavenly Father into this pain.

My partner and I have taken some action to do this and I’ll post more on that separately.

Meanwhile I’ve been feeling overwhelmed. I’ve had a couple of appointments with the pain clinic which have been very draining and in some ways upsetting. I’m sure I’m going to learn things that really help there and I have to try to keep going, keep trying, keep open to what they’re saying and offering even through the parts of it that hurt.

Today my partner and I are going away for a few days. We are staying in a besutiful hotel. We’re going to meet up with some of his family and my goddaughters’ family too. This is the first time in I don’t know how many years that I’ve been away on holiday. It’s not to a totally unknown area but I’m anxious. It’s a huge thing for me to go away and stay somewhere I don’t know and to stay a few days. I am excited too and know I really need a break. Most importantly I’m looking forward to some time to spend with my partner, talk and pray together, and share home calmly rather than constantly running around at the point of exhaustion and it seeming that time in which we can be there for each other and be thankful for each other sometimes comes last. I’m thankful for these coming days and pray for God’s blessing on our time together.

There’s a pool at the hotel and I have made up my mind that for the first time in about 7 years I’m going to get in the pool. I’m going to try to do some of the exercises my pain physiotherapist gave me and try to swim a little. It should be fun but also a great challenge to overcome as I haven’t been in a pool since I used to swim obsessively to try to lose weight when I was in the grip of bulimia.

So it will be a weekend of firsts and implementing some beautiful changes, please God.

Wishing you all good things this weekend.

Ginny xxx

 

Ten dishes challenge #6: chicken stew and exploring wheat-free

Since the new year, actually I’ve been much better than usual at cooking meals, though usually I haven’t managed to remember to take a picture to add to this series, hence the lack of updates. A significant reason I’ve done better at cooking is that I was preparing food to share with a couple in my block who were in serious financial difficulty, and also cooking for another friend who is very unwell and struggles to eat at all let alone cook.

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I’m motivated to cook when I feel it’s to help or care for or simply for the enjoyment of someone else. This can help me overcome feeling too exhausted to do it. When I’m cooking for others, there is actually some joy in it even if I’m battling the chronic physical pain. The thoughts and voices that taunt me that I don’t deserve good food, must not eat, fill my head with repulsion at myself and greed and failure, do not come so loud when I’m cooking for others and sharing the meal. When I’m with others, I don’t binge eat and I cannot purge food. Perhaps it isn’t the ideal way out of these eating disorder symptoms – I have to be able to feed myself for myself in the end – but the more times I do cook, do share food, do manage not to binge eat and purge or restrict for long periods, the quieter the voices become even when I’m alone. It’s a very slow process and can still be awful but I think it’s a strength that will slowly grow.

The other major change in the last month is that since I was in hospital with stomach problems, I’m on a wheat-free diet because I was advised to try this. So I’m finding out new recipes or adaptations to recipes. As much as possible, I’m finding foods and ingredients that are naturally wheat free, because a lot of replacement products are very expensive, especially the processed ones. A very small loaf of gluten free bread will be £2.50 rather than 80p for a similar sized normal loaf; a packet of wheat free biscuits may be up to £3.00 rather than 75p or less for regular supermarket biscuits. I can’t have these things regularly on wheat free, at least not when I’m relying on Benefits whilst I’m signed off work. The plus side of this is that it leads me to cook more and eat more fruit, veg, beans, meat and dairy. My food bill will increase a bit nevertheless but I don’t think it will be unmanageable if I’m very careful to go for cost effective recipes. In fact, I’m often enjoying finding a new variety of foods and the altered diet. For example, I’m going to try making my own bread using wheat free flour. I discovered these funky coloured carrots that were tasty roasted:

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It’s not all saintly. Chocolate definitely still features in my diet! 🙂

For the first couple of weeks I was out of hospital, my stomach was very unsettled and I was mainly eating rice, rice crackers, cooked vegetables and fruit, peanut butter then gradually some egg and cheese as well. Most meals were looking something like this:

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Slowly, as my stomach is a bit better, I’ve wided my diet again with meats, yoghurt, various treats or desserts like chocolate, or fruit bars, and I’ve tried some wheat free cereal a couple of times. It’s a gradual process and I’m still feeling unsettling effects from the stomach problems I had.

I’ve also returned to using my Nutribullet, which I find most helpful for upping my vegetable and fruit intake with juices, ensuring I have high fibre intake and consuming things that can be harder to get into my diet. In the winter, I don’t enjoy eating a salad as I might in the summer, but I can make a yummy smoothie with some raw spinach and mixed leaves, avocado, banana, apple and a little lemon juice.

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The result does slightly resemble the bathroom suite my parents had in the 1990s, but I promise it tastes good. (Warning – in my experience, home made juices, whatever the ingredients even if you use brightly coloured fruits, tend to turn out green or brown. This may not look appetising however if you can overcome the colour they usually taste good.)

Yesterday I made a chicken stew with lots of veg and mashed potato, which I was very pleased with as I used not to be so confident cooking meat. I had the day at home so was able to pace the preparation better than usual. There was plenty left over that went in my freezer.

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Thanks be to God for helping me to rediscover some joy in food, some opportunities to share and eat with others and enjoy it, and gradually continue on the path to a more healthful diet and feelings around food and my body.

Ginny xxx

Ten Dishes Challenge #5: spanish omelette / fritata with carrot and warm cabbage salad

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Wow, I’m finding this series harder to do than I’d imagined! My previous post in this series, on Bert, was a kind of guest appearance. (That soup turned out quite well, by the way, though it needed double the time in the slow cooker that the recipe said.)

Here is some food I made when I had two friends over for our Christmas celebration. I didn’t attempt traditionally seasonal turkey because of a tight budget, as one person was mainly vegetarian, one had recently had an operation and has not yet much appetite, and in any case we were only the three of us. Instead I made Spanish omelette, baked not done in the frying pan because I can never do it well that way, warm white cabbage fried with onion and grated apple, and carrots roasted with a little oil, lemon juice and slices of apple which caramelises them as they bake. A Greek friend told me about the carrot recipe.

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It worked well for having friends over because it’s possible to do a lot of the preparation (such as boiling the potatoes and preparing the veg that go in the omelette) in advance. It also makes it a good dish for me as I can prepare it in stages gradually, taking a break when I need to if I’m tired or the pain too much worse.

Ginny xxx

Meet Bert

Hello. Meet Bert.

No, not that Bert! (NCIS joke, sorry.)

I have a way of naming inanimate objects, especially in the kitchen. This is my slow cooker, Bert:

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I’ve had Bert for a year but only today taken him out for his first use (and naming). How bad is that, I know. That’s how reluctant I can be to cook for myself and I’m trying to break that. Hopefully, Bert is going to cook a nice soup tonight, for tomorrow’s buffet dinner. I know I’ll be up til late finishing preparations for tomorrow so I can keep an eye on it. It takes 3 hours.

Two friends will be coming tomorrow, one when she finishes her shift at the hotel where she works, and the other will arrive earlier and we’ll go to Mass together. He has had an indescribably difficult time recently so I’m glad we can celebrate a little together.

I realise soup (and hippos) is a fairly un-festive topic for Christmas Eve. A more appropriate post follows very shortly!

Wishing you a happy evening…

Ginny xxx

Clip from NCIS – possibly series 2 episode 23 according to YouTube, though I am not sure about that, I think it is series 3 ; with thanks to MetalRixer for the extract. NCIS directed and produced by Donald Bellisario / Don McGill, property of CBS / Channel 5 and respective artists.