Tag: inpatient

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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Sleepless at the latest precipice on our path – PIP, and hospital

I so want to be asleep right now but my brain’s awake with useless whirring energy. This week has seemed so long already. My partner was admitted into hospital on Monday night after a fall and worrying symptoms. He was “only” in til Tuesday evening and thankfully is now safe at home but more question marks are hanging over his complex health difficulties right now. We feel so lost navigating the way through to get him the treatment he needs and cope with the process.

On top of this we found out today – through a text message he received whilst he was in hospital – that a big chunk of his PIP (a Benefit paid to people with disabilities) has been taken away following a review he had a few weeks ago. No warning, just stopped; just a text message with no details and no support. We are waiting for the letter detailing the decision. It seems crazy as his condition has worsened so much since his last assessment but it was what I feared would happen, because of my own prior experiences with PIP assessments. This is what seems to happen to so many claimants. With this cut, he will lose his car, because he has it through a mobility scheme tied to the component of PIP they’ve taken away from him. We are both dependent on the car to get anywhere. I will now be housebound except for when I can afford door to door taxis as I am too physically disabled to reach the bus stop and can’t manage on and off a bus without help. He will be in a similar situation. I don’t know how we will get to his almost daily hospital appointments. £25 – £30 per day on taxis there and back is impossible on our budget. I don’t know if we will qualify for hospital transport. Thankfully there are a few weeks before the car is taken away. We can appeal the decision on his PIP but I doubt a new decision will be made before we lose the car. His other Benefits may well also be affected because the rates paid are linked to receiving a certain rate of PIP or not.

So at a time when my partner is already under utmost pressure and stress with his physical and mental health, a legal case relating to one of his injuries, anniversaries of painful bereavements and traumas, finances, and multiple problems involving lies and deceit from people we placed trust in (leading to the collapse of several projects that we so hoped would bring stability and security to us and another family member and the apparent loss to waste of hundreds of hours of work) – now this. Now that one bit of security is gone.

It is hard to know how to carry on. It is hard to know where to get the emotional and physical energy to do what we have to do. I don’t know how to act or respond seeing the person I love suffering, hurting, being treated terribly, being let down and abandoned. My brain kicks into gear with the adrenaline in some way and buzzes with lists of what we have to do now, different outcomes and scenarios. But my emotions can’t keep up. Nor does my physical body. Right when my partner most needs me and I most want to be there.

It feels as though we are trying to find our way on a path through a jungle. Each side of us is dense vegetation and tall trees we cannot see through. We work our hardest at following the path, staying on the path, walking onward. We cannot see far ahead as there are always blind bends. Beyond each blind corner we don’t know how the track may twist or split. Even trying to be prepared for each possible eventuality isn’t enough. There’s always a stone, a thick fog, a sudden precipice you couldn’t see. Worse still, sometimes there are gaps in the foliage and you see through to sunlight and in the distance, a view stretching ahead of a safe and beautiful place. You work out the route you need to take on the rocky path you’re on right now, to reach that place, and your steps are a little lighter. Then without warning, a branch bends down from the trees surrounding you, coils round your middle, it drags you high in the air, spinning, crushing you, and then flings you as hard as it can and you fall back into the jungle again. Any sign of the safe place is gone. You find yourself beside another path but you have no idea what path it is; certainly it’s no longer the one you had worked so hard to follow.

It’s hard to keep on getting back on the path and you lose hope that any of the paths really lead out of the jungle. You almost know that the moment you think of the beautiful place, a branch will grab you and fling you as far away as possible from everything that have you hope.

That’s what it feels like. It’s self indulgent to express it but that’s what it feels like. Focusing only on our pain does no good, but that’s what it feels like.

We do still have homes. We do have the chance to appeal this decision. We can choose hope. We can do all we can to save money. We have so much more than many people and our lives are so different together. I can at least be here always, for my partner. We can trust that Jesus is with us, beside us, reaching for our hands.

I just needed to get it out tonight. Thank you for listening.

Ginny xxx

How long their words stay with us

I’m trying to persuade a friend who is very ill to go to A&E tonight, or at least call 111. I wish I was where he is and could take him.

He is not at all well in so many ways. He’s waiting for several operations.  The worst danger tonight is that he has unbearable pain and symptoms to do with blood clots he has; we know with these symptoms that there is a danger of a blood clot in his stomach. We know he should seek help urgently in these circumstances with these symptoms; medics have told him this.

The main reason he is very reluctant to get help is what was said to him by a doctor the last time he was admitted, a few days ago. The doctor made a range of sarcastic comments about him to nurses and another doctor and said outrageous things to him including that hospitals are for people who are really ill not timewasters like him! This was when he’d been admitted when he’d attended as he was instructed to for an ECG and scans. He was found to have three bloodclots in his leg, as well as the numerous other serious problems for which he is due to have operations.

I cannot conceive what would lead a doctor to say what this person did. I know anyone can have a bad day. Anyone can dislike someone. Doctors, nurses, HCAs and other staff in hospitals are under a critical amount of pressure, now more than ever. But what would lead someone to say such bitter, accusing, unsubstantiated, false things to a person they are specifically there to care for? Did the doctor actually believe it? Or was he somehow venting anger, hate, judgement, for some reason onto my friend?

Not only this but without asking any questions to determine his mental state and without advice from the psychiatry team at the hospital or the community mental health service my friend is seen in, the doctor said to my friend that he should be Sectioned, and started trying to arrange this. Was he assuming or insinuating that my friend’s physical health conditions didn’t exist and were delusions? In spite of countless scans and test results and reports? Had he branded my friend as attention seeking because that’s the stereotype he holds of people with the mental health problems my friend has? Did that stereotype have such a hold it negated the physical evidence in front of him? Or does he regard people with mental health problems as unworthy of help or care however much they need it and think instead we should be shut up in institutions out of the way of those who he thinks do deserve help?

I’ve been on the receiving end of this numerous times. I’m really hurting for my friend and knowing he’s been left in so much danger now. Whatever the reasons behind what that doctor said, his words have told my friend he’s unworthy of help and must not ask when he needs it. My friend struggled enough with that already. He has had enough abusive people telling him he deserves pain, deserves bad, is asking for it. I don’t know exactly how it is in my friend’s head of course, but I know from my own experience how much louder memories that tell us we are unworthy, that confirm what our abusers told us, scream at us than any fledgling sense of ourselves and our value can. Words like this doctor’s join with the voices accusing and taunting us and they do not fade; they take a grip of us and punish us if we do not obey them.

My friend is in unbearable pain now and potentially great danger, and I’m trying to persuade him to go to A&E or if he cannot bring himself to do that, to call 111 for advice. I’m praying that if he does speak to 111 – when he does, please God – the advisers that speak to him are compassionate and show him there are people that do want to help and do have compassion and will help and believe him.

What this doctor said to my friend was awful by any standard, I think. Still, I wonder do people, especially people in authority roles (such as those who determine the medical care we get), know how much difference their words make, for good and for bad? I think words do have greater power for those of us with BPD, with histories of trauma and abuse and rejection, and no doubt with many other health conditions too. This is our responsibility to be aware of and to try to learn ways to cope with and I’m starting to see that very gradually,  with a lot of time, we can. It would not be at all fair to demand that other people treat us more carefully than they treat others. Actually, this is one of the things I fear demanding of others. But when we are already in crisis, desperately needing help, it would help so much if those caring for us knew the lasting difference their words and actions can make.

Ginny xxx

 

 

Carers who really care

The doctors and nurses who looked after me when I was in hospital for my operation last week were fantastic. I owe them huge thanks. It was really busy on the ward the two days I was there, probably all the more so because a lot of surgeries had had to be rescheduled from the previous day. From my arrival, they were sensitive and compassionate. I was there because of my physical health but they knew about my mental health as well and we discussed it during my assessment when I arrived. The nurse taking care of me took time to be really aware of how both my physical and my mental health issues were affecting me and to enquire about whether I was getting the help I felt I needed and would be supported once I returned home after the operation.

It was a minor op but still daunting to me. The nurses and doctors’ compassion, communication, availability to answer questions, even simply their general presence, genuinely doing all they could to help, made such a huge difference. One nurse even taught me the instant ice trick!

I wasn’t an emergency, an urgent or complicated case, thanks be to God. They treated so many people in those two days, most of whom I’m sure needed much more care than I did. Yet they still had time for me.

I am so thankful for these people who give so much.

Ginny xxx

That should have been me

Do you ever feel that someone else’s place or circumstances should have been yours? That you really wish you could swap, or take for them what they are going through? I am not talking about good things, more about difficult things. So many times, when someone I care about is suffering, I’ve wished that I could take for them what they are going through. I guess that much is natural, when we care for someone, particularly with parents and children – I’m not a parent but I imagine loving parents would probably willingly take suffering themselves to spare their children’s suffering. Weirdly, I get these feelings with people I don’t really know. I can get really strong feelings that I should have been in their place, that it should have been me, not them.

When I was in the hospital for my operation last week, there were several of us on the ward having similar procedures. Lovely NHS blue curtains round the beds are fine for privacy in visual terms but do nothing to stop you overhearing what is going on, much as you really try not to! So, I ended up gathering that the lady in the next bed, about the same age as me, was having the same operation as me for suspected endometriosis. We both went into theatre and both came out and the doctors came round to see us to tell us the outcome. I’d gone in expecting to be told I had extensive endometriosis and that it had grown across my bladder and potentially other organs. I’m single and I do not want to have my own children. The lady next door to me had a (from what I saw) caring, loving husband or partner and I gathered that they were at the stage to consider starting a family. She didn’t know what to expect in the op. We both came out. I got told that there was no endometriosis. She got told that she has severe endometriosis, it has grown through her other organs, it was so severe they could not remove it in that operation and will need to do another more complicated operation, and if she wants any chance of having children it’s very unlikely and she would have to go through freezing eggs and having IVF. She was so astoundingly brave, talking to the doctors and talking to her husband / partner, I was stunned, but she has this shock and loss to face of likely not being able to have children.

Now – apart from acknowledging the fact that I have distinctly too big ears and need to stop being such a nosy moo (bring ear plugs next time!?) – I instantly felt that my place and hers should have been swapped. I should have been the one to have the endometriosis. I’m single. I don’t plan to have children, for so many reasons. I knew that already. I expected endometriosis. I’d not really have lost anything if I had it. She has a partner and they love each other and probably wanted a family and she’d have been a lovely lovely mum.

I didn’t know her and I’m sure I’ll never cross paths with her again but I cried and prayed to God, that should have been me. It should have been me, not her. It hurt.

Frequently, I get this strong feeling that it should have been me. It happens with friends, where I really wish I could, and feel I should, be able to take on pain that they are going through and go through it in their place. It also happens with people I barely know. Possibly it’s connected to times I dissociate, or my feelings that I “shouldn’t have been me”, shouldn’t have been who I am, I’m not real, everyone knows my thoughts and intentions are something other than what I think they are (something bad) – but this is different. Feeling I should have been in the other person’s place when they are suffering… that I wish I could take it on for them… that I want to take it away from them (but it’s more than that)….

Is that a typical Borderline Personality Disorder feeling? Or typical of Personality Disorders in general? Do you ever experience these feelings?

I’m sorry this is a badly written post.

Ginny xxx

 

 

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx

 

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]

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

Another year ended (Perhaps, just for a minute, I can believe.)

Another year ended (Perhaps, just for a minute, I can believe.)

Today in my church we celebrate the Feast of Christ the King, the last Sunday of the church calendar year. Next Sunday will be the First Sunday of Advent.

Time passes too quickly.

It’s easy to regret, at this time of year.

Advent is a time of joyful waiting and hope in darkness – for me in my faith, preparing to receive in our heart’s God’s gift of love, and placing all our hope in a God who comes into our darkness just as He came as a helpless little baby to Bethlehem that first Christmas. He does not fear to enter our need, confusion and darkness and we need not fear our darkness and confusion because He delights to come to us.

This time of year is one of heightened scary emotions too. It can feel like being pulled back into too intense memories of the past, of past events and tensions, past failures to make things what I should have. We talked about the emotion of regret in my therapy group and I said, trying to give hope to someone else who said she felt regret, that the idea of regret implies perhaps that we know some way in which we would have liked things to have been different. Perhaps we can build on that.

Right now I don’t think I know how to make things different. Looking back this year or so has been terrible on the face of it with loss after loss. Loss of two jobs. Loss of a very close friend (former partner) when our relationship finally was dashed away completely. Leaving two temporary homes. Loss of the ability to carry on or hold it together. Loss of my job and loss of the ability to work full time; with it loss of stability, colleagues, confidence to be able to do anything at all good. I have been in hospital three times for a length of time as an inpatient and at least twice more for a period of hours when I was suicidal.

There is constant news of so much suffering, fear and terror (in all senses of the word) in the world and more and more hurt that cannot be stemmed. What do we do faced with this? What can we do that is good? What is going to win out in the end? I hurt so much too for people close to me who are ill or struggling or suffering and feel their pain to a point I cannot breathe. I wish I could be any good to them.

Is my grip on reality slipping further and further away? The voices, seeing things, explosive emotions, longing not to be alone…. trying to keep going seems more of a fake and more of an act, more exhausting and harder to keep up. Asking for help fills me with fears of unworthiness, having lied, being a fraud and my intense inner evil that I can’t purge.

Yet a couple of people close to me have said that they see a change in me and something getting better that wasn’t there before. I cannot see it yet but they can.

I have a flat of “my own” rather than just one room as a lodger. I can make it home.

I have discovered friends who do not abandon me even when to myself I am totally repulsive and when I cannot believe that anyone would choose me or want to be around me and when I feel I can be no good to them.

I got to work with someone I truly trusted and respected and learnt from him, not only specific skills and knowledge, but how to be fair and calm and how to give generously and work always in a dedicated manner, yet still keeping boundaries and structure and still holding on to a sense of one’s worth when everything around is screaming the opposite and deriding you. I cannot in any way hold that myself yet, but I watched and learnt and it stays with me somewhere. I hope we may stay in touch.

The Lord has treated me tenderly and shown me He is with me and in a moment of the most impossible despairing distress, showed me that at the deepest point and longing of our heart, there is love and there is Jesus, and just for a few minutes I could believe.

I have a therapist. I have one to one and group therapy. I can go to a support group sometimes. I can ask for help when I need it from a specialist PD service, which is a blessing and luxury in the NHS that such a thing is available in my geographical area.

I can join in a therapy which explores emotions and thoughts and reveals something to me every week. It hurts and shakes me but I have to trust that this can somehow lead me to coping and living better and being able to reach the same plane as everyone else in some way. I don’t think my BPD will ever suddenly disappear like with a magic curative pill but I do think I will learn to feel and live better and learn to let the good things ground me rather than the terror. The darkness will not grip so hard.

It’s the end of another year and Christmas is coming (and everything that means in my head, my heart, my family and out in the world). It’s a scary and shaken year and it has passed so fast.

Still, just for a few minutes, perhaps I can believe.

Ginny xx