Category: On the borderline

Please plan your crisis 24 hours in advance…?!

WARNING – discussion of suicide, suicidal thoughts, emergency services

Am I expecting too much? I don’t think I am. Yet again I and my friend are being bounced around from service to service when he/we are most in need and so many opportunities for giving help missed. But I’ve certainly been made to feel I am asking too much and am a nasty person and more importantly, yet again my friend is left in avoidable danger.

In my local area, there is a specialist phone line for people in a mental health crisis, accessible via 111. This is a pilot, I believe, which may be rolled out in the rest of the country. According to information published about this crisis line, it is for patients, family, carers, friends and professionals, you can get an assessment of your needs, help, advice and visits, it is available 24/7, every day of the year. It is supposed to help you get more specialist help more quickly than if you have to go to A&E.

I phoned this line today because my friend is suicidal and today is a very “risky” day for him. He has specific plans and whilst there does seem to be a part of him that wants to keep going and not end it today, and I think it’s possible he will get through, I’m very worried about him. He was promised to get help from the crisis home treatment team, but he had one phonecall in which they told him to phone services if he felt worse. They have not assessed him or visited. The community service he was seeing haven’t put anything in place.

I wanted to get advice what to do and how to help my friend. I wanted to raise the alarm that he hadn’t had the agreed support and I was apparently the only person who is going to be with him today. I needed to ask some advice for me on how to cope because I’m getting very near another complete breakdown myself. I don’t know how to avoid me losing it and flipping out again when I want to be helping him.

So I phoned this line. First I was told nobody was available but brief details were taken and I was told I’d be phoned back in a few minutes. 1 hour 20 minutes later, having heard nothing, I phoned again. There was no record of my previous call. “You didn’t speak to me before, how would I know the details?” asked the operator. I went through everything again (painstakingly  spelling every name and number about 6 times…) I was told that I had not been told I would be called back today. Er, yes I was, I was told I would be called back in a few minutes. “Oh no, we have 24 hours to respond.”

But we’re talking about someone potentially about to end their life here. Don’t you think that might necessitate an urgent, even immediate, response?! Isn’t this a crisis line?!

They made no assessment of the situation, would not listen when I tried to tell them the home treatment team input had not been delivered as agreed, gave no advice except for if he attempts to end his life, call an ambulance. What about any support that might stop him getting to that point? What about any professionals putting help in place? At the very least, any advice to me? At the moment I seem to be the only person doing anything today to keep him safe. I have no training, I do not know how to help him, I am ill myself and close to breaking point. I am terrified what is going to happen and whether he’ll still be here in the morning.

I tried to impress the urgency of the situation and that a call at some point within the next 24 hours was not soon enough seeing as he planned to end his life today. The so called crisis line told me that I simply had to calm down, that I had to realise they have plenty of other referrals to deal with, that they are very busy and it is not very nice for me to suggest they aren’t doing anything (not sure how I did that?), and when I insisted on speaking to a manager she continously talked over me and threatened to end the call. I was told that they had told me about plenty of other ways to get support. They had not suggested one single thing.

I would expect more from a crisis line. I would expect immediate response when someone is suicidal. How can it possibly be okay for them to say, sorry we’re too busy? I would expect the promises in their literature about getting assessed, supported and visited by mental health professionals to be fulfilled. There is no mention in the literature that they may do nothing for 24 hours. I would expect professionals to be ensuring my friend’s safety today, not me. I want to be there for him, I want to listen, be a friend, offer comfort and encouragement. I am happy to stay with him when that helps, as I will today. But I should not be the only one doing something to stop him ending his life. Is it really too much to ask? I don’t think so. He has asked for help and so often been turned away. This has been a pattern for him just as it was for me in my care. If harm comes to him today in my opinion it will have been completely preventable. That is not to blame services for the state he is in, but they have failed to provide support they agreed to, could have and should have.

I don’t know why I keep on having some hope in services that they’ll do what they promise. I’ve had enough demonstrations to the contrary. I’ve given up on help for me but I don’t give up so easily for a friend. I suppose it’s natural to have some trust in those we believe are there to help and protect us and that instinct doesn’t disappear quickly even when it’s proven wrong. If I could expect the total absence of support it wouldn’t be so distressing. I’m not looking for sympathy though it probably comes over that way. Just very angry, bitter, lost and scared.

Ginny xxx

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

Ginny xxx

 

Hospital

My friend has been admitted now (see my last post).

He was in much more danger than I realised. I’m not putting specifics to keep confidentiality and to avoid any unhelpful triggers for readers.  He only told me after we had parted earlier. He didn’t want me to know and be scared. Then he went to A&E but didn’t go in. He was scared. He felt huge guilt too I think. He was confused and distressed and we lost contact and he was walking or lost in the hospital grounds I think. I got there as quickly as I could in a taxi phoning security to search for him. Thanks be to God for Security whose officers tracked his car. Thanks be to God that he did make it into A&E. I still don’t know exactly how.

Again I didn’t want to leave but he really preferred I did as his anxiety about hurting me (which he has never done) was so high. I spoke with the nurses and we all agreed is best for me to come back in the morning. He’s being cared for…he’ll be on a drip…he’s not alone…

I’m scared. He was so weak and drowsy and in and out of consciousness / awareness.

I’m hurting. Shaky. Scared. Exhausted. I don’t know what to do with all I’m feeling for him and the overload in my mind and chest. Hurts to breathe.

I know I have to accept right now I can’t do anything. The doctors caring for him can do something. God can do… more than something. Still I feel so horrible for everything I can’t do and all the good I see in him where he only sees what he calls poison.

I place him in your hands dear Lord Jesus. Hold him please tonight. Whatever happens now.

Ginny xxx

Descent into emergency

Kyrie eleison. Lord have mercy. Christ have mercy. Help us in our need dear Jesus, please, Lord hear our prayer.

6.45pm

I feel so scared and powerless right now.

My dear friend is in complete crisis. I’m so scared he isn’t going to make it. I don’t want to tell all his business here. That wouldn’t be right. But he’s been through some horrific things and his mind and body is in utter pain. He could die, through what’s happening to him physically and the risk he’s at mentally.

I won’t leave him on his own right now. He’s massively distressed. He’s too scared to go to A&E tonight. I’m trying to insistently but lovingly persuade him to speak to the out of hours services to see if he can get to another place of safety, or to speak with his GP. Please God he is going to see the GP in a short while in an evening clinic they have. Please God we get there. He is letting me stay with him now. He so did not want me to at first but I could see the danger. Please God, please may he still accept my company and please may he get somewhere safe tonight. (There are very concrete reasons I can see he’s at risk but they are not my business to write here.) I’m in his car waiting for him whilst he’s speaking to someone who he felt he had to go see about an issue that came up earlier; I don’t think this is going to help any right now for him but he really felt the need to do it and I didn’t want to force him not to. Please God please may he come back soon.

I’m barely hanging on myself. I’ve been losing the grip the past week especially. Dissociating, losing time, self harming, huge panic attacks and flashbacks including physical sensations.

A neighbour has started being aggressive and verbally abusive. He’s been pressing me for money for months. He’s been doing the same to other vulnerable people on the estate. He’s been citing endless disastrous circumstances but it’s now coming to light that something else is going on. I’ve sensed things wrong for a while but now it’s becoming clear what he’s telling me does not add up and isn’t the whole story to say the least. It’s getting out of control. I believed and wanted to help him to get help, supported him with getting referred for a support worker and foodbanks. Now it seems nothing is true. I’m afraid for a vulnerable person he lives with. I’m going to have to contact the police I think.

8.40pm

We have spoken to the doctor and are waiting to hear if my friend can get into a safe place with support. There is no space at the moment. Even if he does it is only open til 1am. We’ve gone back and forth with the doctor and out of hours services. All doing all they can but of course there are these limits… and in the end I don’t know who can keep him safe when he’s as far down as he is now, hating himself and hurting himself so much and so afraid of everyone. I’m ripping apart inside. I’ve been where he is, or similar. I know perhaps I cannot do enough. I care for him deeply as a friend. I wish I could rescue him but know despite all the love I can give perhaps I cannot.

9.15pm

I didn’t want to leave him. He has gone to the hospital. The doctor was worried for me and said I should not go with him. He insisted I not go with him. He promised not to hurt himself and that he’s going there. I couldn’t do anything else especially since it’s his car and I can’t drive. We are keeping in touch by text. I believe his promise but I know from being there myself that when you are going to end it, that blackness and blank terror and loss and self revulsion and pain overrides everything, no matter how firm and true and faithful your promises. The doctor told me to go home because she was worried for me but I so did not want to leave him. I cannot save him in the end but I can be there.

9.25pm

He is at A&E now. The situation is far worse even than I knew but thanks be to God he is there. Thanks be to God he’s going to be taken care of…dear Lord I pray he’s met with compassion there as well as getting the physical medical treatment he needs. Please Lord, please can they still help him. Please enfold Him in your love, whatever comes now, if it’s the end or not, please show us Your saving help. In the darkness of pain and not knowing, danger, even death, You are our certain hope and Saviour.

Mother Mary, St Joseph, please offer to your Son in the way most pleasing to Him, everything I offer, everything I do, everything I pray….

Ginny xxx

 

 

How prevalent is the assumption that disabled people don’t work or don’t have responsibilities?

As a disabled person, I’m pretty used to being seen as a problem, especially in the workplace, and sometimes all the more even when “reasonable adjustments” are supposedly being implemented. For example, in my last secretarial post, discussions about supposedly agreed alterations to my working hours would begin with explicit statements about how I “had to realise how terribly difficult it is”. I was pressurised not to attend medical appointments or follow medical advice. If I was in any way assertive about my needs (not disability related ones) once “reasonable adjustments” had supposedly been put in place, I was reminded of the “great leniency” being shown towards me and how my boss was allowing things most firms never would. It got to the point that I explored this with a manager. Was there something wrong about my performance that they considered they were being lenient about – if there was I would much rather they openly told me what it was, so that I could try to correct it. Oh no, said the manager, and she went on to tell me pretty much in so many words that it was the fact that I’d been allowed to return to work after a period of sickness absence and that [what had been agreed amounted to reasonable adjustments] had been put in place! Once I dared to be assertive that whilst it was agreed that I was working reduced hours, there needed to be a plan for how urgent tasks that arose in my absence would be dealt with (it was not okay for me or for anyone else for them all to be left for my return on top of my usual full workload), I was told by my manager that everyone knew I could not cope with the job. From then on, bullying and harassment continued, along with continually calling on the fact that everyone knew I couldn’t cope with the role. This was despite the fact that, until the point that I had asserted my needs, all my reviews and appraisal had been excellent and I had taken on many responsibilities beyond my job description.

I left soon after, feeling I had no other choice as my mental health was deteriorating so rapidly. I made a formal complaint, but the lies in the company’s response and the regulatory body’s disinterest meant I gave up. 2 years since this started, the impacts on me are still considerable, especially intense self doubt about whether I can take on the responsibilities of a skilled job and the intense emotions I feel when I try to take on more responsibilities now. I’m a good way off returning to paid work but I know these memories will be something I battle with when I do.

Looking back, I feel that although the company I was working for made “reasonable adjustments”, they did so out of a sense of obligation. They made them on paper but were not really willing to discuss the practicalities. I did not hide my disabilities from my employer at any point but when I had a period of particularly bad health they became more visible. I feel that the firm continued to employ me out of obligation but from this point I was seen as a problem, an inconvenience, “terribly difficult”, someone who cannot cope. As soon as I asserted my needs (both relating to my disability and not), this was unacceptable to them. I was no longer wanted. Looking back I feel as though I was acceptable so long as I never spoke out, so long as I never dared assert myself because I was so grateful for everyone allowing me to stay despite all the problems I caused. Whatever happened they needed me to fit their impression of me as someone who can’t cope. If I didn’t assert my needs, eventually the ever mounting pressure would have got too much and I would not have been able to cope. When I did assert my needs, they took this as grounds to announce that everyone knew I couldn’t cope. Whatever I did, it came back to this. If I stuck to my contracted hours and a task went undone, I would be told off for not completing it. If I worked late to complete a task (sometimes specifically with a manager’s agreement or even at their request) I was told this showed I couldn’t cope with my job because no other secretaries worked late (untrue incidentally).

So, I wonder, how much of this was done malevolently and how much came from my employers’ assumption that disabled people can’t cope with responsibility or can’t do the job? Yes, in the later stages I believe their lies were malicious or at least covering their own backs so that should I take my complaint further I would have no case. However I am coming to think that their underlying beliefs about me as a disabled person played a large part. (It could have been that I was actually rubbish at my job from the outset but then why was this never reflected in my performance reviews?)

It seems a very backward assumption that disabled people can’t work. Then, the other day I encountered the assumptions of a total stranger who had met me for a few seconds at most, that I’m irresponsible and don’t work.

I was about to get off the bus when the driver sailed on past the stop despite 3 of us ringing the bell in plenty of time. By the time we got to the next stop this had trebled the length of my walk home and this over-exertion has now worsened my symptoms such that for the next 3 or 4 of days I’d be almost unable to walk at all and wouldn’t be able to leave the house even to get to my medical appointments. Someone who has no way to appreciate what life with a disability entails might not realise the extent of impact of having to walk a bit further. The driver was very rude and dismissive when I asked why he didn’t stop and so I thought it worth pointing out the impact it had on me. He would not apologise and lied saying that the bell hadn’t been rung and what was it to do with him. This being the last in a considerable number of recent bad experiences with the bus company that have left me dreading bus travel (recently I was shouted at and ordered off the bus because I asked the driver where the bus was stopping during a temporary diversion and wasn’t willing to accept his answer of “I don’t know I’m not a taxi driver”!), I decided to complain and asked for the company’s telephone number. The driver flatly refused to give any details. At this point another passenger came up, pushing into me, telling me “Just get off the bus, you [expletives deleted] idiot! It’s alright for you, all the rest of us have responsibilities and work to get to! Take the bus number you idiot, he’s told you [more expletives deleted].” On top of which the bus driver nodded and smiled, said she was absolutely right, actually thanking her. Pretty much encouraging her.

I was furious with the passenger as well as the driver and it took me some time to work out why I felt so strongly. Part of it was the driver’s refusal to apologise, refusal to admit he’d missed the stop and pretending the fault was mine and generally very poor customer service, which really gets to me as I’ve worked in customer service for years and feel strongly about how I’d treat other people. I also ascertained he missed the stop deliberately to save time, though that is something of an assumption. But I figured out that what really upset me was the implication in the passenger’s tirade and the driver’s support of her.

“It’s alright for you” whilst the “rest of” the passengers have “responsibilities and work to get to.” She made the assumption that I did not have work or responsibilities, that I was different from everyone else on the bus – why, because she could see I’m disabled? “Take the bus number you idiot, he’s told you”. She assumed the bus driver had given me the information I needed and I was too stupid to understand (he hadn’t). Again because I’m disabled? And I should “just get off the bus” – why did she find that it was wrong for me to stand up for myself? Are disabled people too much of an inconvenience to the “rest of us” when we do? Should I keep quiet because everyone else has responsibilities and jobs that count more than mine? The driver supported her being verbally abusive. Perhaps he was just hoping she’d intimidate me into giving up so there would be no possible repercussions for him if I made a complaint, but in the context it felt like him agreeing I was stupid, an inconvenience and so unworthy I don’t even merit decent customer service.

Am I being paranoid? Was it not actually to do with my disability? Was the other passenger setting me apart from her and the rest of the passengers for another reason? I don’t know. Instinctively I feel it was very much to do with my disability and perhaps the fact I wasn’t behaving in the typically meek, apologetic, unobtrusive way it seems acceptable for disabled people to behave.

Hmmmm. To be continued at some point, I think….

Ginny xxx

 

Needing too much again

I need someone. And there isn’t anyone. It hurts.

I know that’s ungrateful. It really hurts right now and I’m very low. There’s never any answer to this longing need as we have no call to expect it to be answered when we’re adults. And I do have people. I have my GP, my support worker, the project worker who’s helping me continue my volunteer work, and my weekly art therapy. I have my friend L and her family. These are much more than many people have. I’m so fortunate to have art therapy and to get support towards volunteering and to be able to ask my support worker for practical help managing Benefits and finances. All these are extra blessings that help me go on. I’m thankful.

Why does it feel so dark right now? Why am I shattered and crying and really near giving in? Why am I still longing for someone to be here and hold me? I really wish for a friend here, someone who would be with me in some of the worst times when I’m scared and can only cry. The little side of me, the child, is hurting and my escape world too close, pulling me in stronger whenever I’m alone. Either that or I feel utter pain and loss. For all the support I have, I have no friends here near me. Let alone talking to anyone or sharing what it really feels like, the two people I know in the city where I live have ignored me or said they have far too much going on to meet at all. Based on so many lost relationships so far, I assume they find me too much of a burden to have any contact.

I cannot trust anymore as I used to try to. I’ve learnt what happens to friendships when I’m honest or admit I need help.

The police are still searching for my mother. I can’t begin to describe what I’m feeling knowing she’s missing and what it means, the indefinite loss, no answers to what happened to me…

All the time I was seen in the personality disorders service, I fought the feeling that they didn’t believe me, thought I was a fake, didn’t believe what had happened to me, didn’t believe what I was feeling when I was overdosing and suicidal, thought I was just making threats. They never kept me safe. I gradually built a tiny bit of trust in my group therapy. I found some things out this week that pretty much proved they didn’t believe me. And that took with it any trust I’d built and and hope that any of them, the service or most of the other group members, thought I’m anything other than a fraud and evil and nasty and manipulative. And anything I had gained in therapy starts to unravel and the voices in my head are right.

I’m trying to be there for my friend R and keep giving and listening and being responsive and compassionate. But I’m on the edge of a precipice with him and so close to falling. I can’t keep holding him when nobody holds me. Nobody helps me.

God holds me. God – “and I will say to You, my rock, my stronghold, my God in whom I trust.” God knows me better than I know myself. God knows my inmost being. I used to fear this. I used to fear Him because He knew how bad I really am and all the evil that will get out that I can’t control. But I just can’t see anything anymore. I can’t have any certainty myself and I can’t put my trust in anyone else. All my feelings seem twisted and wrong and corrupted by the abuse. I trust God. He sees. He sees whatever I do.

I don’t know. I’m confused. I have an uncontrolled childish need for comfort and not to be alone.

I have to fill in forms for going to see the lady who is helping me with goal setting and voluntary work tomorrow. But I can’t get my head round them and feel too low to do anything but sleep.

Ginny xxx

What is it okay to protect for ourselves?

I still can’t figure out why I’m crumbling so much trying to support my friend. Partly it’s because the trauma he’s suffered and needs to talk about is so close to my own experiences and I don’t know how to cope with my own emotions about my trauma, and bad as I feel about this, I can’t always cope with someone else’s experiences, the even stronger emotions this gives rise to in me and the overwhelming emotions they are also feeling. It’s as if I absorb the pain and feel it 3 times over – my own pain and distress, my pain for them, and their pain and distress.

But this isn’t the only reason. When there’s no link whatsoever to my experiences I’m still feeling panic, dread, boiling frustration (inappropriately), unease, fear… and terrifyingly, too many emotions that are too close to those I felt when I was caring for my mother (who was also my main abuser). My conscious feelings towards my friend are nothing like what my feelings towards my mother were so why are these experiences occuring? Very raw feelings, as well as flashbacks, hallucinations and panic attacks are increasing. For some reason the situations with his health deteriorating out of control, hopes for things being understood resolved and treated then being delayed time after time, his near desperation, his rapidly overtaking weakness and physical degeneration, even his need for me, is triggering the feelings I had when I was with her. This scares me. It’s nonsensical. He’s nothing like her. The situation is not the same. Yet I can suddenly feel just as desperate to escape. I don’t know why because he is generous, good, caring, honest, he wants to help me, he does not judge me, he worries for my wellbeing and he supports me greatly in the faith we share.

Why does his need for me scare me so much too? He tells me I’m the only person he trusts to tell certain things or to give comfort. I am thankful and sort of honoured that he trusts me but I don’t want to be the only person. That isn’t safe for him. I am only one person. Yes, I care, I pray, I do not judge (well, wish not to, with God’s help), I can empathise deeply; but I’m only a normal person. I can’t keep him safe, heal him, I am not the total good he thinks I am. God gives hope. God gives safety under His care. I am only one person. I am thankful he trusts me but I don’t want him to trust and confide in me and not the doctors or other professionals who can help. If I’m honest, I cannot be the only person because it isn’t safe for me either, as well as for him. I cannot be the only person who knows when he is in danger. I cannot carry that or keep him safe. I cannot be the only person he can turn to because despite my best desires I cannot infallibly be there and there will come a time I don’t do the right thing or the thing he most needs or that I hurt him unintentionally and I don’t want him to be in danger then.

Which brings me to: what time or mental or emotional resources can we protect for ourselves? He needs me desperately and constantly. As well as practical help, there is rarely more than a couple of hours that I’m not listening, emotionally supporting or encouraging him or at least trying to. I might be coping more stably, or having lower levels of the currently overwhelming emotions, if I had more breaks, time separate from him, time to meet my own daily tasks and duties, time to keep my commitments to others, time to pray, time just to rest. But what would he do then?

When is it okay to protect time and mental resources for myself? The Lord is with us always. He always listens, always answers and always holds us in His Heart. Jesus gives His life for us. We are called to emulate this, to join in the sacrifice He made and pour ourselves out in love. If I’m to follow Him, to offer my life too, then I need to be there for people in need, always not only when it’s easy or convenient. I have felt the hurt myself of people I’d counted good friends cutting off or cutting back contact when I got more ill and being alone when I most needed contact with friends and to know I wasn’t going to be left for my weakness.

So I just cannot limit my availability to someone in desperate need. But I’m crashing up against my own physical and emotional limitations. What is the loving response? Admittedly my friend is not my only calling and responsibility. I have a calling to my family, my volunteer work, to run my home responsibly, to manage bills and finances and so on. In a way I have a responsibility to my own health and wellbeing too, though that’s hard to admit. Though that’s a fight in my head to. I should deny myself to reach out to bring God’s love to others. Then again the Lord created me, wants me, loves me – perhaps not only so that I can be denied and weakened? At the moment every responsibility except to my friend is falling to the side. I have no reserves left for anything else. That really does not feel right. I feel more guilt for it, especially not having the energy for family, for contemplative prayer or for treating my home that I’m blessed to have with due care so everything is in disorder.

This is all very uncomfortable and I’m so tired. I need to seek guidance.

Ginny xxx

I don’t remember why – the guilt of my dissociative episodes

It is scary sorting through piles of possessions I do not remember buying.

As part of my recovery work I’m allocating time to take care of my home, household related tasks (bills, organisation, housework etc), in order to take responsibility for living an ordered life, to not get into trouble or overwhelmed with unpaid bills and tasks ignored until they become insurmountable, and to make a safe calm and even beautiful home. I had no home for many years, moving from room to room, moves often prompted by my mounting distress. When I was blessed to find this place, it took a long time to feel at all safe or dare to believe in any stability. Then gradually, it became an escape, flight not by constantly moving around but by means of a protective enclosure. Which is good in some ways and something I still need when things are too much, which is frequent, but now it is time for my home to be more than that; even a place and a life that supports my health.

Part of this is continuing what I’ve been trying to do for some time, which is clearing through accumulated items and clutter and organising the things I decide I do need. I’ve been working on this for some weeks or months on and off, tackling different areas. I’ve acknowledged for several months in therapy and with my support worker how I bought and accumulated items as a desperate attempt at escape, distraction and protection. I acknowledge how out of control my spending used to be and too often still is and how impulsively I buy things when in my dissociative episodes, apparently driven by some desperate need at the time that leaves me sick at myself and painfully empty afterwards when my consciousness returns, a massive blank missing in my memory and emotion, but the fallout of my actions apparent – money spent, arguments had, horrific things said, tablets taken, sometimes alcohol drunk and most of all items bought (usually clothes, makeup, accessories, things I’d never buy for myself “normally” or rationally). I hate myself then, most of all for the money spent on myself and the hurt I’ve caused other people.

I’m coming face to face with all this as I’m clearing through hoarded possessions. Much as I’ve been aware of and fighting these problems for months, it’s still very scary finding things I don’t remember purchasing and don’t know why I have. Perhaps it’s even scarier because I don’t really know why I do this when I’m dissociated. Why? Why do I buy things? Why do I become what the evidence means I am in these times – selfish, irrational, irresponsible, needy, childish, bad? What else am I doing in these times? The violent emotion that takes over and hurts people around me, but still I can’t control it – who am I and where is it leading? Why do I behave in ways I can’t remember, that people close to me say are terrible?

I’m scared. I want to take responsibility. I’m trying to carry on gradually sorting out my home. It occurs to me whether looking at items I bought in these dissociative states where there are huge memory gaps, will help me connect at all with what I was doing and who I was at these times. I don’t know.

Ginny xxx

Talking with medical students (updated)

Particularly relevantly given my previous post, at the end of this week I’m going to be speaking with a group of medical students about stigma in mental health. The local university runs several of these small group sessions through the academic year. Attending one is compulsory for all final year students. The scheme was set up by someone from the Recovery College (which I must write the promised post about!) in conjunction with the university psychiatry department. Each session is led by two people with lived experience of mental health conditions and encountering stigma in healthcare environments. I volunteered to take part through a patient involvement network.

Most of the session will be question and answer and discussion, but first I have to speak for a few minutes about my personal experiences. I can think of many examples both good and bad of care I’ve received, stereotypes that affect me and those that care for me (especially specific to BPD), times my care and relationship with services has suffered because of discriminatory practices and rules, how often I’ve felt rejected and not believed when I’ve most needed help and the long lasting effects of this; also, I want to share times that have been good, such as the empathy I met with when I had my minor op last year which helped me cope with my panic and emotional instability at the time, and the encouragement I’ve found at the Recovery College in being valued for who I am and even for what I’ve been through.

This being my first time, it’s hard to know what the students will be interested in. What will they most want to hear about? What is most important for them to hear? What will they want to ask? I’ve had a little guidance from someone who has spoken at one of these sessions before and any more suggestions would be helpful. If you can think of anything particularly important to discuss, if you have your own lived experience for instance with your own mental health or as a friend, family or carer, or if you have a student or medic’s perspective, I’d be really grateful to hear any thoughts.

Thank you so much.

Ginny xxx

24.o2.2017: By way of update, the meeting with medical students was cancelled as the psychiatrist who was due to facilitate the session was called away unexpectedly. I’m due to  speak at another session in the Spring and afterwards will post about how it went.

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