Month: March 2016

Tuesday coffee group

Tuesday coffee group

Today is my day off. This morning was horrible with very bad back pain and feeling really low, but I managed to get out to a weekly coffee meeting. I can’t always go to this because of my work but I like to go when I can. I first started after I was in hospital, when another patient told me about it. It’s a kind of support group for local people with mental health needs, although it doesn’t take any particular structured form and is just like friends meeting for coffee. Most of us, including the lady who coordinates it – a lovely caring person who unobtrusively helps and advises many people in need – have been inpatients at some point in our lives. We all face a variety of mental health challenges. We don’t necessarily tend to be in touch between meetings but it is something regular in the diary to look forward to and where we know that we can talk about how things are if we need to, not talk if we don’t want to, where we empathise with each other and where there isn’t the usual pressure to keep up a front and appear “fine”. I think these sources of peer support are few and far between and I’m very grateful for it and the little cafe that welcomes us for a few hours every week.

Ginny xxx

[Image from “Gilmore Girls” (episode PS I love you) – created by Amy Sherman Palladino, all rights belong to respective artists]

“Be soft…”

“Be soft.

Do not let the world make you hard.

Do not let pain make you hate.

Do not let bitterness steal your sweetness.”

Kurt Vonnegut

Too often, I do not know how not to be taken over by bitterness. It’s one of the most frightening things about the out of control emotions in BPD. That anger comes from nowhere. That nothing else exists of me but unbearable pain and I cease to be able to conceive of everything I most care about.

How do I keep on going, holding on to a truth of a permanence greater than my emotions? It’s one of the reasons faith matters to me so much. God is Love and always Love, unchanging and infinitely greater than me or anything I can feel or conceive. God made us in His image, ultimately good, for unity with Him. No matter what we fear or feel, our hearts are His. We cannot lose Him. No matter what we suffer, He is not a product of our emotions or our actions. No matter what we cannot see, He is giving us a purpose and a share in His work in this world.

xxxxxxx

Be soft.

Your heart is a fertile ground, tilled and turned in pain as in joy, to receive seeds of hope and love and newness. It is not a comfortable process, yet what tender flowers will grow there.

Be soft.

Receive the sun, receive the water, sometimes gentle as the evening dew and other times torrents of salty tears. Precious grows the rose from these streams.

Every flower has value, from the most elegant rose to the tiniest blade of grass or timid daisy. Just so, each heart and each step upon this way .

Be soft, still when the rose bears thorns. Let this pain be turned to purer love and stronger hope; let compassion and mercy spring unchecked along this path of testing and pain. Do not let this ground freeze over, to try to flatten the land, hide the barren earth and cover the sharp edges of the pebbles on the way. Anger may be swifter, indifference may be safer, indifference is cold, and nothing can take root in its frozen land. Freezing ground may be hard and seem strong and impenetrable – but then it shatters, fragments and is gone to nothing. The tilled earth, soft, accepts beauty taking root and good multiplies, gives and gives on.

Be soft, let the vines take root and bear much fruit, sweeter for the gentle ripening, sun and rain. The grains of sand and stones are slowly refined and turned, polished and strengthened, and become the brightest gems and precious stones. The fruit is rich and plentiful and feeds many needing and hungry souls, for this is love, compassion and mercy.

Be soft. Be soft and you will give and sustain so many more than you imagine. Be soft and you will shine, much brighter than you know.

With thanks to Cathy for the inspiration of the quotation “Be soft…” – visit her lovely blog at http://www.cathylynnbrooks.com 

xxx

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #6

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #6

Protection in Emptiness

Eating Disorders and Personality Disorder – #6

“Closing the drawbridge” – eating disorders and rigidity

PLEASE READ WITH CAUTION – this post contains discussion of eating disorders (primarily anorexia), description of my eating-disordered thinking patterns, and a link to an article about studies on calorie restriction

[Wow, again it has been too long since I have posted in this series. Sorry.]

Many books about eating disorders, in particular anorexia, mention rigidity of thinking as a symptom which emerges as restriction of food increases and weight drops. When I worked at an eating disorder service, it was frequently described in inpatients on the ward. I’ve been pondering why this is and how much did I experience it when I was anorexic. I never used to think that my eating disorder was about control, although I now would take that back and I think I did use it if not exactly for control, in order to separate myself from my mother’s abuse and protect myself (and, I thought, others too) from demands, emotions and the dangers I felt they presented.

Perhaps it is logical that counting calories and measuring portions and exercise, forcing yourself to adhere to a punishing regime of starvation and painfully excessive activity in the very weakened physical state of anorexia, requires a strong, almost angry, obsessional drive. Sticking to this above and against all the natural urges of your body to keep you well and nourished, to the point that your body consumes its own muscle for energy, requires a steely determination that must be fuelled from somewhere. This could be seen as rigidity. It could easily spread to other areas of cognition and daily routine.

Certain chemical changes in the brain are thought to contribute to this rigidity as well, I believe. Two studies were conducted in the 1950s, using as participants conscientious objectors to National Service and former prisoners of war. One of these is the Minnesota Starvation Experiment, where starvation was imposed on physically and psychologically healthy participants who had no history of eating disorders. As the participants’ calories were reduced and their weights dropped, their thinking patterns became more rigid and obsessional thought and behaviour patterns emerged. When their calories were no longer restricted, they also became vulnerable to binge-eating. You can read more about Ancel Keys’ Minnesota Study here. (It would be considered highly immoral by today’s standards, although perhaps it is worth bearing in mind that one purpose of the study was in order to find out how to care for and manage re-feeding and weight restoration in victims of starvation in several countries following World War II.)

I am not sure to what extent rigid thinking was a big feature in me when I was severely underweight. Others who knew me at the time might disagree! It was mentioned to me on a couple of occasions.

On further thought, perhaps I did not struggle so much with rigidity over, say, my daily timetable – with the notable exception of excessive exercise, as I forced myself to swim a certain distance a certain number of times per week, until I was so exhausted and weakened that I could no longer move through the water which felt ice cold, my legs cramping, and I would drag myself to the changing rooms with my skin purple and blue, bruises appearing that did not heal and no number of layers of clothing warming me up.

However, if the rigidity was not externalised, it was certainly internal. This is what I think of as the “closing drawbridge” of anorexia that locks up or locks away everything we fear. I’ve talked in previous posts about the blissful, safe numbness of anorexia, ensuring my emotions were in check and flattened, and ensuring the evil I perceived in me was locked away to hurt only me, weaken only me, so that I could not hurt anyone else. Locking up the perceived evil locked up feeling, too. No more panic – just obsessive counting calories, distances, how to hide or avoid food. No more fear – just explicable pain, wonderful blanks and emptiness, safe empty gnawing in my stomach. No need to feel others’ feelings. No need to be hurt or be overwhelmed. Just glorious numb, nothing, whiter. lighter, clearer than before. No needing; no taking; just closing down, separated, apart from everything, locked up safe, pushing away and always succeeding, taking nothing in, frozen.

As a friend pointed out to me recently, emotions take energy, just as physical exertion takes energy, so with vastly insufficient calorie intake, there simply is no energy with which to feel. Despite the lack of energy, the drawbridge was shut tight and closing harder. The further I starved and restricted, paradoxically, tighter shut the door and even stronger came the energy driving me on, not to need, not to feel, not to fear, not to touch anyone or anything.

Coupled with that strength came a desperation never to leave this closed up place and never to need or feel again, to remain unreachable, to keep safe away and to keep everyone else safe away from me. If I could just be sure to hurt myself enough and never to eat, this wonderful place would stay with me. The fear of everything the drawbridge kept away joined the energy and both drove me harder and deeper into the numb place of anorexia.

Combined with my mother’s illness and abusive actions, there was no shortage of reinforcement from the outside that this numb place was good. The only period of my life in which my mother’s emotional abuse and threats reduced and in which she was even caring towards me, in which interactions with her were free of threats and scorn and twisted statements about the harm I was doing to her and my father, was when I was severely underweight with anorexia so severe it was probably life threatening. I was no longer a danger and no longer seemed to be so evil. I even thought perhaps she loved me. I even dared to hope perhaps the evil thing I was sure was in me and that came out and hurt and controlled and deceived everyone, was gone. If I could just stay like this, perhaps it wouldn’t come back. On the other hand with the drawbridge tight shut my body was mine as well, only mine, and the anorexia was mine, and she would never come near me again, literally never touch me again.

(Perhaps that was the one thing that was eventually true in all my twisted anorexic thinking. She did abuse me sexually during the anorexia but afterwards, she didn’t ever abuse me sexually again.)

Until I started to eat again and weight restore, there was only one thing that cut through my rigid defences, and that was singing. I’m not a particularly good singer but I was in a musical at my school (more because I used to be able to dance, than for my voice, I think!) and afterwards I took singing lessons, which were about the only part of my later school years that was enjoyable. Although I enjoyed singing, during the anorexia I would find that the music had a peculiar effect. We didn’t usually sing particularly emotive songs but I would often find music bringing me to want to cry or causing a strange twisting feeling of unease inside me, as though it was draining away the rigid kind of energy but I wouldn’t let it go. My mother prevented me seeking any professional help for my eating disorder but the only two people to whom I did talk about it honestly at all at school were my singing teacher and my art teacher. (My swimming coach was also very concerned about me and to some extent I did talk to her but, for some reason, although I knew she cared and was a safe person to trust, I was never able to be truthful to her, I think because in some way I feared hurting or disappointing her too much.) I don’t know why music and to some extent art, broke through the rigid protective mechanisms, but it did. I know that music can be very helpful in therapy for people with various conditions, including dementia and depression. I’ve never read about it in relation to anorexia but that might be something I should look into!

The struggles I have with overpowering, overwhelming emotions in my Borderline Personality Disorder, are the complete opposite of the protective place I entered in my anorexia, and they are an excess of feeling and needing which are probably, actually everything I feared. If I’m honest the numb place was safer. I’ve long lost the way back there and lost the key to the drawbridge and I hate that and I’ll admit that in the worst times, when I really hate myself and everything I feel and need, I wish I could return and it’s hardest at these times to try not to punish myself with cutting or purging. I’m trying to learn how to choose life and staying connected to other people – and to my body and my emotions – without the unbearable and dangerous becoming all that there is.

Ginny xx

How often do you “need” to spend time with others?

I’ve been trying for a long time to arrange to meet to catch up with a particular friend. We used to be close and live in the same city, but we haven’t met since a very brief meeting at Christmas, and before then the last time we met was at a an event at her Church in September. I miss her a lot and have been feeling very sad that we live so close but meet a handful of times a year and never in such a way we can catch up properly.

Part of the reason we don’t is that she has a family now, including young children, and I completely understand and agree that family comes first before friends. Still I’m sad to see her so very little – and also (and this is a big part of my feeling) worried for her. She gives all her time to her children and various numerous volunteer works at her church and parish. She home-schools her two older children. She almost never suggests meeting up, she never seems to socialise except for seeing other mothers at home-ed groups, and she told me she hasn’t met up with a friend for over a year. She never takes any time for herself and she does not seem to have any desire to socialise.

Should I be worried about her? I am, very. I feel like she must be so tired and drained and stressed and never have a moment to take care of herself or do something she wants to. Most of all I fear she never has any time that really is for talking and sharing with her friends. I know I wouldn’t be able to cope with even one day of her schedule let alone the foreseeable future.

I think she is amazingly strong, dedicated and generous to her family and she is responsive to their every need (let alone all the time she volunteers). She has clearly made big sacrifices. She says she loves it and never feels the need for any break or to see any one. I just can’t see how she can possibly be well or happy and it seems really isolating to have so little contact with others.

At first I was hurt that she had no interest in meeting – i made no end of suggestions and she declined them all and didn’t suggest any alternatives and pretty much said she doesn’t do that kind of thing. I was lonely and upset already and I’m sad that we are no longer close friends. She really matters to me and I care for her and miss her. There’s only so much you can keep a friendship going and only so close you can be when you only text message and email. And I’m worried for her welfare, as I said.

Perhaps I should just accept that she says she’s happy and she is. It got me thinking, perhaps it’s a difference of personality. She’s happy not to leave the house for several days at times, whereas I usually feel compelled to go outside, see the outdoors, be around people,  even if I’m not meeting or speaking to anyone (except when I’m very low and not going out is then a sign I’m very unwell). Meeting up with someone is of no interest to her, whereas it’s very important to me, although there are few people I trust and am able to be with at the moment. That probably is a particularly bad combination and makes me particularly needy with the few people I do trust! I need time alone too and have times it’s all too much but loneliness is a big struggle for me. So I’d silence, which is another thing she loves. Perhaps it’s as impossible for her to understand my needs, or values in a relationship, as it is for me to understand hers and how she can be well and happy in her current situation.

I wonder whether she doesn’t value meeting in person, spending time together in friendship, catching up, doing some things for herself outside the family and so on? Or does she just need less of them?

This got me thinking, do we all have such very different needs firstly for contact with other people, and secondly beyond that, what I somewhat inadequately call deeper or more meaningful interactions (a good conversation with a friend you trust and can be “real” with,  as opposed to eg a passing interaction in a shop or talking to a work colleague – all are important but I know I very much need to be able to share how things really are sometimes, not just keep up the acceptable businesslike front where I seem to be well and in control of myself! ).

What do you find that you need? What is important to you in a friendship? How do we know which is normal?! I think my therapist would say that’s one of those questions where there isn’t a definite answer right or wrong. … I’m left wondering in this friendship,  firstly if she’s really okay or not and then how can I be there for her, when she has no interest in regular contact? How do we keep up a friendship with someone whose values here are very different from ours?

Ginny xxx

Scared I’ll lose it again

Tomorrow I have my usual weekly group therapy, then I have my monthly care coordination appointment (it’s supposed to be monthly but has been canceled more often than not since October last year). It’s challenging at the best of times when this appointment comes round, especially when it closely follows therapy group on the same day, which is draining in itself.

I’m very worried about the care coordination tomorrow. Last month I was really upset and desperate in the appointment, didn’t get the help I felt I needed to stay safe and left wanting to end my life and overdosed. There was a complete lack of understanding between me and my care coordinator.

I’m scared something similar may happen. I’m scared that I might lose it like I did a couple of weeks ago. I’m so so ashamed of that and I feel dread when I think of it. I’m scared I won’t be able to control what I do and it’ll happen again because I’m so unstable right now, flicking into distress and hurt and anger so quickly.

Also, I’m scared because there are really difficult things I want and need to say. I can’t say everything’s good and fine or that I’ve made progress; I can’t say I think I have the support I need because there are massive issues and have been huge failures in communication and so many things promised have not been acted on. I now operate by expecting nothing from the service and expecting whatever is arranged not to happen. It’s “safer” that way. It doesn’t open me up with hope and trust then twist the knife with another let down or betrayal. It means I don’t ask for help either.

I need to communicate these things. I never do, usually, but if I don’t there’s no going forward. So I’m going to try to say at least some of them and write a letter as well in the next few days.

I do not know how to stay calm whilst I do it. How do you stop yourself losing it? How do you control the aftermath of feelings without harming yourself? How do you keep your emotions level when things that are really deep hurts to you, are unanswered or ignored?

I’d be seriously thankful for any suggestions!

Ginny xxx

Lonely, lost and loud

This evening I think I feel lonely and alone. Sometimes I’m not sure of the difference between those two feelings. Alone is isolated and separated and not belonging, not-empathised-with, not wanted even. Perhaps lonely is more without others, wishing for someone.

Since my close friend and her husband and I are no longer in contact at present, I have almost no interaction in person with anyone outside work, no genuine meaningful interaction at least, beyond exchanges in shops or chance meetings with acquaintances where the front must stay most securely up. That’s a selfish and self-centred reason to miss her, but it’s true, as well as missing her tenacity, determination, energy, faith and curious perspectives; her surprising kindnesses.

I do not know whether or how to try to repair our relationship and whether to expect her in any way to cope with me now, would be fair or something she’d want. She’s said and done things that are clear enough to me that our friendship had no goodness, enjoyment or happiness for her and that it had a lot of frustration, irritation and just a sense of obligation. If she were in need of someone or something of any kind, company,  help, happiness or prayer, I know I’d be the last person she’d choose.

I’m hurting and longing. I’m asking God to give me strength to turn to His Word and stay close to Him, who gives all we need and more and pours love into our emptiness.

I’m trying to make each interaction with anyone, down to the most seemingly insignificant, a chance to give my best – caring, patience, a smile, a warm response. Doing these things outwardly, perhaps my heart that’s hurting and cold right now may be changed.

It’s loud in my head today. It’s been a day of doubting and checking everything and a cloud of trepidation telling me everything I’ve done wrong and every way I’ve failed. Every comment and criticism ridicules and mocks me, cutting deeply. It feels like being surrounded on all sides. I actually startle easily and feel someone is following and watching me; I hear whispers of anger and disgust and voices pulling me apart – and my mother’s voice.  It’s like I’m stumbling on a jagged path where there is too much mist to see where it will lead. I can only see as far as a very few steps ahead. But I must keep walking on this way because either side is thick darkness, trees and unknown beings with branches or arms that would enmesh me, surround me and call me into deeper night that would obscure all hope. The path turns and does not follow the expected course and I have no idea where or if it will end. Often it twists and seems to lead me deeper into the forest, the branches clutching closer and the voices louder. I cannot retreat because behind me,  somehow, the path has fallen away. I can only stay on the path unfolding gradually before me, the rocks mark out the way, and I try to walk forward through the mist.

I wonder how many others may follow a way such as this and whether we may be nearer to each other than we know.

Ginny xxx

Monday again

I’ve been off work nearly a week because of annual leave for hospital appointments and my usual rota’ed weekend off. I’m really nervous about going back tomorrow. I seem to remember posting on this topic before! Such a small thing but causing me so much anxiety at the moment and the more I think how I shouldn’t be anxious the worse it is, so I’m just trying to walk forward and give my best in each moment and find every little opportunity to see good things and do good things.

How do you feel as the new week starts? You are in my thoughts and I wish you something joy-giving and something grounding in every day.

Ginny xxx

Walking this Borderland #10 – bat naps and counting sheep: the struggle of sleep

 

[NCIS produced and written by Donald Bellisario and Don McGill; all rights belong to CBS / Channel 5 and the respective artists. With thanks to Dream-A for the clip (Season 8).]

Sleep is one of the first things that I find becomes difficult when I’m going downhill. Just when I’m thinking about going to bed, my psychotic symptoms usually get up. My auditory hallucinations and sometimes the visual ones will be worse when I’m alone at night. The re-experiencing of traumatic memories definitely is worse. For long periods at a time, because of historic abusive experiences and fears, I’m too scared to sleep in my bed and then if I try but have to get up, I can become terrified to open the door to go out of the room as well. I’m locked into a flashback of a terror I had as a child that I’d find my mother dead outside my room, because of a threat she made. To escape it I’ve been back to sleeping on the sofa again for weeks.

Anyway, I’m going off topic a bit. At the moment to try to get back into a proper routine of relaxation and proper sleep, I’m trying the following three tips for a better night:

First, I’ve moved things around in my room (for example, putting the bed in a slightly different place) so as to create a change of environment and make it as different as possible from the one associated with my fears and flashbacks.

Second, I have found a relaxing CD which I am playing specifically before sleep time and only before sleep time, so as to make the association between that music and those words, and relaxing for sleep.

Third, I’m going back to trying a technique one of the nurses told me at the hospital, which is a modified version of counting the proverbial sheep. When you are in bed, close your eyes, and then close them a little bit tighter – not scrunching up your eyes, but just pressing the eyelids closed a little harder than you would if you were just blinking, maybe. Then count very slowly back from 100, concentrating on each number. Or, try imagining a colour which you enjoy looking at, and hold a cloud of that colour in your mind. Focus on it but try to prevent it taking on any particular shape or form. Though the latter sounds strange I found it to be curiously effective as relaxation for a few minutes, together with some music, even if I did not fall asleep!

Right, here’s to “bat naps”, and eventually a night in bed.

Ginny xxx

Crisis Plans

Last week, after the really distressing meeting on Tuesday, where I completely lost it and just screamed and screamed, I had another meeting with the same CPN on Thursday. It went quite well although I am still reeling from Tuesday. I never lose it like that when anybody else is around. I do that alone at home, usually at night, usually cutting myself before I can reach that point, because it stops some of the noise in my head for a while and quiets the fury and hurt. On Tuesday all my control methods didn’t work and the worst of me exploded. Since then I’ve been feeling both raw and outside myself at the same time.

We tried to come up with other ideas for what to do when I am extremely distressed when I am on my own, other than always turning to cutting or overdosing. The problem is that no matter how harmful those things are, they do “work” to stop the feelings (if only by stopping me being conscious!) punish myself, so bring down the emotion and enter a state of numb nothing for a while, or at least explicable pain.

One of the things we came up with was the Rescue Box, which I’ve posted about previously. I’ve committed to making that up this week.

The other things my CPN suggested were: putting my head under cold water eg cold shower for 20 seconds, to shock the body and so bring down the emotion (a bit like the lemon juice idea!), starting some activities that would give me more social interactions and so leave me on my own less, developing a relaxing routine for evenings (which I’ve got out of the habit of), and sorting out my dodgy internet access so that I can have more contact with people via blogs and similar, as well as making use of online resources for relaxation and mindfulness.

I’m not very sure how this is going to go. I’m starting with small steps, making up the Rescue Box this week and getting in contact with my internet provider.

A large part of the problem for me is that all these techniques are great ideas but I too quickly reach too high a level of distress to be able to use them. When I’m in that state, or when I have more of the psychotic symptoms (which tend to accompany higher distress), it’s as if the part of my brain that would reflect enough to try one of these techniques just shuts off. I have an overwhelming need for someone else to keep me safe and almost hold me and ground me and prove something exists beyond the fear and distress. But the PD Service seem absolutely against anything that would lead to me not being on my own in these situations (like being referred to the Crisis Team who’d come to see me at home, or being admitted when I’m overdosing etc). I’m not entirely sure why. They are written into my “crisis plan” as ways to keep me safe when I can’t keep myself safe, but when it comes to it they are withdrawn or refused. This is something I’ll be talking more to my 1:1 therapist and/or Care Coordinator about.

I guess I have to learn to discover earlier when the extreme feelings are coming – at the moment they spring up at me from nowhere and that’s terrible. It feels very out of control. There’s no doubt that as I’m experiencing more emotions, I’m becoming less stable.

I’ll post an update on how things are going with trying these techniques.

Ginny xxx