Tag: eating disorders

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.

Exercise without returning to extremes

WARNING – this post discusses weight loss and eating disorders

I saw the nurse today as I had to have an ECG. I’ve had a lot of chest pain lately which is thought to be costocondritis but the GP wanted to check my ECG again. I’ve also been potentially diagnosed with another condition but that’s a story for another time.

Whilst I was there, the nurse took my weight and height and we decided I’m going to try the exercise referral scheme again (to a different gym this time), to have support to try very gentle swimming or at least exercises in the water.

It is time for me to do something about the fact that I am really upset at how much weight I have gained in the last 2 years, through poor diet and through my medications and being very sedentary as I often can’t walk more than a very little way unaided. The weight is increasing my hate of myself and my body. Not succeeding in losing it by my familiar means over the last few months has increased this hate even more. I know this isn’t a healthy thought pattern and I know many of my “familiar means” are eating disorder behaviors. At the same time, I am now slightly overweight according to BMI recommendations, so I need to lose weight for my physical health; also I need to care for my body’s needs by eating healthful meals rather than oscillating between starving and junk food, as has become my habit through lack of money and depression. I need to try to do some kind of exercise to improve my physical strength to manage the pain from my chronic conditions better.

So I have to figure out how can I manage my situation now and the changes I need to make without plunging deeper into eating disorder thoughts? How do I start an exercise programme without using it to punish my body? How can I keep track of my weight and control my diet without returning to my totally addicted state and the ever-present revulsion at my body tipping back over into self-harm and purging?

Does anyone have any thoughts about how to lose weight and change your eating to get back to a healthy weight range, when you have a history of binge-eating and bulimia? Are there any particular resources on this topic? I know that somehow I need to address the pervasive disgust I feel towards my body and ideally I’d do that first, but it has been present most of my life and I can’t allow my weight to grow to an even more unhealthy level. Most of my life since age 3 when my abuser started to use weighing me and controlling my food as one way of punishing and shaming me, I’ve been overweight, severely underweight or plummeting or ballooning between the two. I have lost all concept of normal food intake and normal appetite.

Ginny xxx

A closing drawbridge and a silent cry: when it’s less safe

A closing drawbridge and a silent cry

Eating disorders and personality disorder

When it’s less safe, but I am no longer my abuser’s child

WARNING: this post contains mention of childhood abuse, discussion of my experience of anorexia and disordered eating and the purpose it served for me in my eating disordered thought processes.

When I started drafting this post, I didn’t actually intend it to form part of this series on eating disorders and personality disorder. I didn’t realise that it would be so much about my eating disorders, but it turns out that it is. I started writing tonight in preparation for my therapy group tomorrow. Last week, we were talking about feeling safe. In the discussion, I said that at some points during therapy (around the past 14 months so far), I’ve actually been less safe than when I was not in therapy. In hindsight, perhaps I should say, felt less safe. It has felt less safe. Despite this, I still feel therapy is a process I need and want to go through. Someone asked me a question about that, to which I struggled to verbalise the answer. I’ve thought on her question during the week. I’m not going to write what she said because I don’t want to break her confidentiality, but I wanted to share the reflection she has led me to about becoming more or less safe during therapy.

As soon as I tried to explain, the familiar eating disorder thought came into my mind – when I was anorexic it was safe. I know how sick and dangerous that thought is and how illogical, the physical destruction of my body having been so clear. Yet, there was a point not very long ago in therapy where I so desperately wanted my anorexia back, because it would have been safe, and not so much too much. With anorexia, I wasn’t too much and nothing was too much. (Except food, of course!) I was encased in a safe, protected place, and I felt nothing but its power, voice and drive. My emotions and my body made no more demands.

With anorexia I could be certain in the knowledge I was starving, punishing, weakening, enough to atone for what my abuser told me I was, enough to avoid the damnation I thought I otherwise deserved, enough to ensure I was not a threat. Enough to satisfy my abuser.  And even years after I had got away from her, I thought perhaps anorexia could take me back to that one time where it had seemed she wanted me, seemed through a child’s eyes that perhaps she loved me, the one time I wasn’t bad, where I was so weakened she took total control. That would be totally safe.

I was never cared for by her. Total control stood in for care instead. The closest thing to care and safety for me was my total self-destruction, total physical weakness, allowing her to take total control of me. My BMI was about 13. I was in unbearable pain in my back and legs. I could just barely walk with crutches and had to spend a lot of time in bed. She took control literally of my movements, my food, my use of the bathroom and toilet, my washing, my dressing and undressing, my weighing (any action that could have and should have been private, she invaded) my contact with other people (even the doctors who wanted to help me, whom she prevented me seeing most of the time). Telling me what I was thinking, telling me what I was doing to the family, telling me what to say, total control – but this total control was the only time that the terrible powers and terrible intentions she told me I had, seemed to cease. My body and my mind ceased to make demands and I succumbed to her totally. This was the only safe place. The rest of the time I lived in fear of what I would do to her or the family and of her terrible threats coming true.

Paradoxically, at other times my anorexia gave me something that was nevertheless mine. It was my anorexia and my body. I think I’ve written before how when she had me strip in front of the mirror, a fierce voice in my head said, this is my body and you will never touch me again, and I resolved to lose as much more weight as I could.

That determination and angry strength was unusual. It was more about cutting off. Later, I stayed as numbed and weakened as I could. Long after I was out of the anorexic weight range, physically safe, I continued to punish myself. Starving. Vomiting. Cutting. Overdose. On the outside, I could do what was required and expected. I achieved. I was together, doing what they required in terms of education and work. Again, that was safe, because I was doing what was required, my dangerous emotions were numbed, my atonement continued. Until I imploded. Everything went to pieces.

As everything fragmented, numb was no longer sure and safe. I desired the end and wanted to end my life. At the same time, my child voice that I had suppressed so successfully for so long, was screaming and desperately needed to be cared for. This was explosively dangerous. My abuser’s threats about what I was would come true; they’d be proved to be true for all to see. The evil in me would explode out of control, if I could no longer punish and weaken myself. I would cause unlimited hurt to others without even seeing it myself, but everyone else knowing the evil I was. I would never be cared for (ie in someone’s total control).

Straight away, the rejections began. (Again. Just as I’d been rejected when I had needs and sought help as a child – terrified what my abuser’s reaction would be; my father not knowing what was going on, so not protecting me.) I was not under my abuser’s control any more, but there was no care for me, no one to protect me, and the few people I trusted were not there for me. The pressures – I don’t know if consciously or not – piled on me made it very clear I am a disappointment, not good enough, not what they need me to be, that they will only accept me as long as I am moving in the direction they think I should be at the pace they have dictated.

I cannot silence the needs any more. Anger boiled out of control, hurt screamed. Going through therapy, the feelings intensified. There was no way back to the protection my eating disorder had given me. Now, when I write about how it worked and why I wanted my eating disorder back, I am horrified. I am horrified at the power my abuser had over me and how I allowed her to have it and how that made me feel safe.

I will never receive now the care I did not receive when I was a child being abused. I will never receive again the closest thing I knew to care, the total submission to another person and control by them. Terrible as that was, I feel as though I will never be sure, as I could for a brief time be then when I was totally dependent on her, that I am not the bad, evil thing I had been taught that I am.

With the loss of all my coping mechanisms, including stopping self-harming and stopping overdosing, as I have somehow by the grace of God managed not to do in the past few weeks, it does feel more dangerous. I don’t know how to find any reassurance, internal or external. My feelings, my emotions, experiences, feel so out of control and dangerous. I am no longer my abuser’s child. I am no longer what my family requires. I will never have the care and security I did not have as a child, nor will I have the safety unconditional acceptance would give, because I do not have that now that I’m no longer what they require. I don’t yet know how to exist without these things.

Part of me grieves for the loss of the eating disorder and mechanisms that kept me safe, because stupid and twisted as it sounds, they did at least protect me; despite the harm they caused, they protected me from ending my life, and though it was fairly illusory, they gave me the closest thing I had experienced to being cared for.

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I should say that I think that another important part of the safety issue in therapy is coping between sessions with the emotions that have come up in sessions. Also, the impact that this disorder and the recovery process has across your life. Until very recently having the help of my support worker, I struggled badly with the social isolation that followed the loss of many important relationships, and the “domino effect” of all the material stability in my life falling away because of the financial problems caused by losing job after job and my erratic spending when I was out of control. Struggling with this at the same time as my emotions were going out of control anyway, my desperation for help increasing but being unheard by everyone I tried to get help from and had been led to believe I could trust, brought me very much too close to the edge. My support worker has greatly contributed to my safety now.

Ginny xxx

Really bad day

Well I probably shouldn’t say really bad. Nothing that bad has happened at all. It’s just how I’m feeling and it’s hard to stay with this.

I had my first 1:1 therapy yesterday for about a month because the PD Service took a 2 week break in therapy sessions for the summer and also I had missed one session shortly before the break. It’ll be the first group therapy since the break this Friday. It was a hard session. I was dealing with lots of strong uncomfortable feelings and a situation that’s very scary for me. I know we’re going to have to come back to it in group on Friday. I realised times when I experience the same thoughts and states as I did when I was being abused as a child and they come back at bizarre uncontrollable times.

Perhaps these feelings and what we went through yesterday have something to do with how today has been. Definitely… but I only just now made that link. Also yesterday afternoon I saw my support worker and we got through a lot  (finishing filing out a huge form for my assessment for a Benefit). Though this was great I was exhausted and in a weird state afterwards – cold and exhausted and sad and I don’t remember the rest of yesterday apart from that.

The pain has been awful too because I really overdid it physically over the weekend to travel to my friend’s and back, though I don’t regret for a minute going and the time with her and her family was precious. Today it took me until 11 to be able to stand more than a couple of minutes.

Then I went out for an appointment which was supposed to be for a referral scheme for physical therapy. About everything possible went wrong and I won’t bore you with it now but it was upsetting at discriminatory, turned out to be nothing like what I’d been led to expect and cost me a lot in terms of time, pain and anxiety for nothing.

I’m scared how I reacted and how I felt after. I hate feeling angry and trapped and out of control. I hate feeling used, dismissed, laughed at, tricked, punished… I hate these thoughts and feelings even occurring. Not because of what they feel like in themselves but what they mean about me and the flashbacks and reexperiencing that comes with it. I hate how all the feelings and actions that stayed inside and stayed locked away into my… I don’t know how to name them because I don’t talk about them. My others, my “imaginary” people that are anything but imaginary, my others, that’s all I can say… they stayed safely in the worlds I made for them – the worlds I could escape to – but now they don’t. Now they’re here all the time. In every day.

The rest of the day again I can’t remember apart from that I picked up milk and a couple of things on the way home. I didn’t really even remember that til I saw the shopping bag on the floor. I’m terrified about this dissociating… the time that just disappears after I get the overwhelming emotions…sometimes before too… Then I’ve just been lying down too drained and tired to do anything, trying to do little things to ground me but I can’t concentrate. Everything hurts. Inside my head hurts too.

If this is feeling without self-harm, without overdosing, without starving and purging, it’s scary. It’s a scary place. I’m scared of what I am. Scared of how I’m acting. How I’m feeling. What I’m remembering – my feelings, as much as what was done to me. What I’ll do to people now. That my actions now are based on the trauma and abuse and who this means I am.

I’m scared, crying for no reason. Feels like I’m exhausted and in shock but there’s no good reason now. Can you feel shock years after an event?

Ginny xxx

 

This is different, somehow

This is different, somehow

I’m feeling very very anxious today. My emotions have been shifting quickly in the last two weeks. Many of the emotions are familiar but some aren’t and the startling changes are raw and unexpected.  I feel so shaken and quickly exhausted. A substantial part is physical but a lot is emotional or mental too. Anxiety and hurt and pain but also thankfulness, feeling overwhelmed at goodness and expressions of love – from friends, for example – come suddenly and something is different. It sounds nonsensical because so much of my problem for a long time (and a big feature of BPD) is that my emotions have been so total, overwhelming, all-consuming, the only thing that seems to exist, the only thing I seem to be. Now I’m saying I’m feeling overwhelmed but it’s different. So, what’s different?

I can’t express it properly but since my therapy group two weeks ago things are shifting. I admitted in that group to strong and frightening feelings of anger and need and fear of the voices I hear that tell me I will do terrible, violent things; I admitted that since I have tried to stop self-harming I’m experiencing every feeling I so much wanted to cut off and control to keep other people safe from the evil I fear in me; I admitted how I detach and dissociate and how a lot of my needs and emotions, I only allow myself to feel through the pain of self-harm or in my escape (“imaginary”) world. I admitted I knew that  they would be horrified and disgusted at me and that I was disgusted at myself. Then something happened. The other group members weren’t disgusted or afraid of me.  Several people said that they hear the voices too and that they have similar feelings too. These three things stunned me – that they were not disgusted or afraid, that they hear the voices too, that they also have these feelings. This started to change things. It was more than a feeling of “oh thank goodness I’m not the only crazy one”. It started to mean that if these things are felt by other people too, experienced by other people too – other people who I trust and who are good and kind – then it is no longer something that means I’m evil inside or that I’m just all bad really and everyone else knows it or everyone else will be hurt because nobody could believe I was really so bad but they will find me out in the end, fulfilling my abuser’s threats.

Since then, and even more since therapy group this week, I’m feeling my forbidden emotions, without doubt. Some connection is appearing that was not previously there. The void between my emotion and my ability to be present and think and speak is closing, somehow. Before, everything was either consuming emotion, leading to explosion, violence to myself; or to total dissociation, impulsivity and non-presence then utter horror and depression afterwards and memory loss; or thinking spiralling compulsive thoughts, being unable to connect to the emotion behind them that was just too frightening. Now somehow I am starting to pray and think in the emotion, experience its presence, experience its coming and going… it’s very raw but somehow it is different from how previously the emotion was my everything, my only reality, and the self-destruction (self-harm, overdose, starvation) was utter safety. My escape world of my other dissociated identities is encountering this world more and more, whereas previously they stayed safely separate, present with me much of the time, but not overlapping with my own consciousness, thoughts, feelings, needs…. Now I am feeling what previously “they” felt. That’s scary. That’s unknown. Also, that could be good.

I’m frustrated by how very inadequately I am able to explain what’s happening to me. It seems as if I could put it together better some of the anxiety I have might reduce. I know it isn’t a bad thing and that it’s very important but I am extremely shaken and high in anxiety and needing comforting, grounding things. I am going to find it a struggle the next 3 weeks or so, because there is a break in the therapy programme for the summer holiday time, meaning I don’t have any group therapy this coming week or the next and no 1:1 therapy until the second week of August. Right now I so need someone to work with through what’s happening. I have to try to dare to call the duty support team if I’m getting bad in the meantime. I have to take the step to trying to trust them again and this is as good a point as any, I guess. Perhaps it’s also good that I’ll have to try to cope without therapy. I know part of these changes is going to be learning to experience and emotion of my own without it being understood or accepted or cared about (and indeed without me being cared for) by anyone else. I’ll have to do that in these two weeks.

Ginny xxx

A much bigger loss than they realise

When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.

With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.

I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.

We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.

My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.

Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.

All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.

Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.

First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.

This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.

And these areas are broad.  Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time.  Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.

Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.

It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.

Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.

I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.

In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.

This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.

Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.

If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.

Ginny xxx

Is this pain real?

WARNING: this post contains brief mentions of eating disorders and self-harm.

Which is harder to deal with: physical pain and physical disability / ill health, or mental pain and distress and poor mental health? Is there a difference for you? Does one seem more real than the other?

At the moment my physical health is poor and my physical pain and limitations have been worsening fast, in particular in the last couple of weeks. Any standing or walking is painful and shaky. I need to use my walking stick again, having had 5 years or so not needing it (apart from one time for a few weeks).

Physical health problems can be tangible and visible in a way that mental health isn’t. People can see that I’m using a stick or that I need to rest often. They can’t see in the same direct way when I’m having obsessional thoughts or hearing the voices. I’ve posted before on how many people I’ve met who have Borderline or other mental health problems, feel a shame about their mental health condition and support needs and a guilt for needing help or “not being normal” or not being able to cope. Many of these people, again myself included, have physical health issues too, and the common feeling seems to be that these are more allowed and acceptable (in others’ eyes and also our own thoughts) than the mental health needs. Often that does ring true with me and I’m sad so many people find that. I’ll post on that topic more separately.

Just now I’m struggling to trust that my physical pain is real and allowed too rather than being something I’ve invented, is my fault, not real…

Physical pain is still subjective. Nobody can objectively see how much, say, my back hurts or there are weird numb sensations then burning pain in my feet. Anatomic problems can be seen and measured on scans and tests but what our experience of pain and weakness is, can’t be.

I have been desperate for more visible and concrete proofs of what I experience physically. I have some, for example, a scan has showed some degeneration in my lower spine, the GP performed various tests which diagnosed they inflammatory condition in my knees, and so on. However much of my physical struggles aren’t documented in the same way. You can’t see nerve pain or nervous system inflammation, painful joints, muscle spasms, poor regulation in the autonomic nervous system (well not directly anyway, although some tests can show disrupted adrenal or thyroid function or high white blood cell counts)…

The lack of physical, external evidence of what I’m experiencing is a real problem for me. If i let myself think on it the voices get loud. I think I must be going mad. It must be my fault. It must be my invention or my imagination. I should just get on with it and push through. I’m weak. The worst thing is the thought I must be a fake. I hate using my stick because of it even when I’m in more pain and more unstable without it. I’m deceiving everyone, the voice tells me. Look. Everyone knows. Everyone’s looking at me. Everyone’s talking about what a fake I am. They all know nothing’s wrong with me really. I’m terrified it’s all made up and I’ve faked it all without realising. I’ll never stop it but my whole life I’ll be a fake and at the end I’ll be judged and punished for it. Other voices tell me I’m doing it for attention to make people worry about me. Don’t you know how much upset you’re causing, they ask…

In the past I’ve felt I’ve deserved physical pain. That it’s safe if I have pain or cause myself pain. It means I’m being punished and suffering and that’s safe. It means I won’t be so bad. I won’t be so dangerous. I’ll be weak and that’ll be safe. That was how I thought during my anorexia. That was how getting thinner and thinner and more ill kept me safe. It is/was part of how self harming was safe too because it punished only me, just only me, stopped the evil emotions as I saw them getting out. I say “was” because I’ve managed not to self harm for a month and I’m grappling with the feelings that come to be now I’m not doing it.

The physical pain from my illnesses that I can’t control is different. It is overwhelming. It isn’t safe. It might show my badness (because I’m fake). It’s overwhelming and can feel inescapable but I feel I don’t have the right to think it’s real.

It interacts with my mental control too. When the pain is bad part of my mind freezes. I cannot be warm or present for other people. Trying to interact at all is a fight. Sometimes I want to hide and sleep. Being around anyone can be too much. I panic and want to be safe at home in my secure place. I mix up words and sounds and can’t get a simple sentence out straight. The all encompassing nature of emotions and especially anxieties and fears and psychotic thoughts increases. I feel shut tighter into the world of my Borderline.

I doubt the reality and truth of my physical and emotional experiences. The only pain I knew was real and undoubted was the pain of self harming or starving. The rest of my experience I doubt, as though the real me that’s bad really, angry, fake, deceitful, will be found out in the end, but I can’t escape from it/her. I only just realised that in writing this post. Trying to stop self harming is going to change a lot, I think.

Ginny xxxx