Tag: depression

This boat is sinking

This boat is sinking

I feel rubbish that all my posts are negative at the moment. Like I can’t say or do anything good anymore or be thankful when there’s so much I really should be thankful for – am thankful for – but I’ve lost touch with it all.

Every single time there’s going to be a short moment or peace or rest the next disaster happens. That’s been life pretty much since I remember and I don’t even have things that bad. It’s stupid. Stupid because it’s insignificant in the scheme of things; when there’s so much deeper suffering everywhere around; stupid because I’ve got this far so why can’t I carry on.

But I’m running out of energy and mind and hope and everything else.

My fiancé’s been rushed back into hospital again today after months of fight with the doctors and being dismissed and going round in circles. We don’t know what’s going on or what they suspect or why they are doing the tests they are now. I’m useless for him because physically I’m so ill at the moment I have been in bed, unable to get up for more than a few minutes at a time.

All I can see right now is confusion, being overwhelmed, people I love hurting, me letting people down, mentally breaking apart.

We are going under Lord, is it nothing to you, the apostles cried out to Jesus as the boat was overwhelmed with the waves. I don’t know how much more storm we can stand right now. Where are you, Lord Jesus?

Xxx

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

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

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

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

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

But how do you give love?

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

And the love you want to give is lost somewhere.

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

And then you cry.

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

****

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

Ginny xxx

“Music, sweet music, there’ll be music everywhere…”

It’s been a while since music has made me happy. Music is important for me. I don’t deal well with silence – something I’m trying to work on because it stems from trauma and what happens if I’m alone with my thoughts, my feelings and the voices. So when I’m home alone I tend to have either the TV on or music playing. Many songs help me get through the day by reflecting how I feel and even giving me some sense that someone is here who empathises. Others are effective at taking me away from the stresses I’m working through in reality. They may remind me of a good memory or something I like but more than this, they can be a super-highway into dissociation – not the scary dissociation but what I call the protective dissociation, where I can detach by becoming subsumed into one of my escape worlds.

It’s been a long time since music I’ve come across by chance has stirred up a simple feeling of happiness here and now. Today I was trying and failing to focus on work I want to prepare for seeing the psychologist tomorrow and on preparing a short talk I have to give on Friday. I was exhausted and my head couldn’t take anymore. It’s been a gruelling month. I decided to stop and do something else, a sort of example of the strategy “take the opposite action”. Feeling exhausted and overwhelmed I decided to act as if I were happy and in control of my life. I put on iTunes Dreamboats and Petticoats Diamond Edition – vintage and summery?! – and started cleaning my lounge of a week’s mess. After an hour or so it was as though a switch flicked in my brain and I started to feel mentally energised (if physically tired because of my disabilities and resultant muscle problems) and the panic receded. I hung out the laundry and actually felt happy for a little while.

Now I’m returning to my work for the psychologist and though I’m starting later than planned, at least I can use the boost the music gave me and actually face it.

Ginny xxx

Dancing in the Street by Martha and the Vandellas

Clearing out my flat and trying not to go out of my mind

I didn’t know it had been so long since my last post. Life is chaotic. Either I’ve been too low to write, dealing with flashbacks and triggers or scrambling madly to keep on top of more and more pressing demands.

Perhaps I’ve actually achieved quite a lot, with the unending support of my fiancé. We had to put in a “mandatory reconsideration request” with the DWP for his Personal Independence Payment (PIP), including a lot of extra information and details of everything they had got wrong in their report about him. This meant a huge amount of research and writing. In itself it was a daunting task. There were others we tackled this past fortnight too. Perhaps I should feel pleased we did it. Instead I just feel exhaustion, anxiety and upset (at the lies in the DWP’s report and the ramifications for us of his PIP being cut). If I could feel some sense of achievement I’d feel more thankful and encouraged; I’d see how God is leading us step by step. When despite hard work there is still a maze of uncertainty and upset and no conclusion to the situation – in this instance, we have to wait indefinitely to hear back from the DWP as there is no timeframe within which they have to respond – I find I can’t see what we have achieved. Even when others can and are optimistic.

This month several notably positive moments got lost in the anxiety and depression and desperate hamster-wheeling to meet deadlines. For instance I had a couple of great psychology sessions at the hospital. I need to take the time to build up from that.

Meanwhile as a way to try not to lose it completely I’ve been clearing through my flat – again – putting everything I can for sale this time. I haven’t sold as much as fast as I’d hoped but it’s better than nothing. At least it feels like I’m adding a little more to our savings for our future. Listing items for sale online takes more time than I’d expected, accounting for photographing, pricing, listing, checking postage and keeping on top of enquiries.

I signed up to eBay which I haven’t used for some years. It’s been helpful and I’ve sold a couple of things, as well as buying a couple of cheap smaller size clothes I needed as I’ve lost weight. However straight away I am faced by constant temptation to buy things I don’t need, or binge spend when I’m low. I’m worried what I might do if I shop on there when I’m “gone” (when I’m dissociating) and I spend impulsively, taking me back to the state I was in when I shopped and shopped and accumulated bags of things I didn’t recognise or recall buying. It would be worse to fall into this now when it’s not just me but my fiancé’s life that would be affected. I need to put some safety measures in place.

Ginny xxx

The guilt I feel when I’m met with no response – Part 2

This is Part 2 of a 3 part post. You can find Part 1 HERE

I wonder how much of my misinterpretation of emotional facial expressions is because the people I grew up with, my current family members and I myself express emotions in a different way from the typical?

It occurs to me that I’m told that often I show no emotion outwardly, or that people can’t work out what I’m feeling. In a family member’s words, “we just have to have some kind of reaction out of you,” and “we have no idea what on earth is going on with you so it feels like – aargh – we can’t be dealing with this!” I’m often told this when internally I’m having really strong emotions of loss, hurt, upset, abandonment and fear, and having flashbacks. Sometimes I’ve wanted to keep my emotions hidden. Almost always I’ve tried to turn my feelings inwardly so as not to bother or hurt anyone else with them.

However at the same time I’ve frequently thought other people understand what I’m feeling inside (but don’t want to discuss it so I just have to keep going) when it may later transpire they had no idea what I was feeling. I will then find it really hard to believe they had no idea. I will also be upset because my attempt to keep inside the sad feelings I have, to keep going as you’re meant to and not draw attention to myself, then backfired and seems to cause anger and upset and accusations of being childish, spoiled, rude or disrespectful, and of making other people responsible for me. People have said things like “It looks like you’re accusing me of not looking after you,” “I’m not responsible for how you feel,” “Its not anyone else’s job to make you feel better,” “You’re a spoiled little brat”; I’m told I have to stop thinking about my own problems, should push them aside, should think what other people have gone for me, etc. Which is often exactly what I’ve been trying to do and nearly broken under the strain. I don’t know how I get it so wrong. I don’t know what other people are seeing at these times that is childish or rude etc. If I did I would have some chance of correcting it.

This reminds me that as a child being abused, I was daily really distressed, inevitably expressed it (til I learnt better) and got no help. I was at best ignored. More often the punishments redoubled and threats got worse – more threats of how I was breaking up the family, of how the couple of people I had and loved would die because of me and graphically how I would find them, of how my parents would be taken away. I was told I was a liar, faking what I was feeling, behaving as I was in order to cause worry and hurt to my abuser, to punish them because in some way I didn’t get what I wanted. One of my abuser’s paranoia about us being watched increased too. Her bizarre, possibly psychotic behaviour, and ridiculing of me, came to the fore. I tried my hardest not to express any feelings, even physical feelings. When I got ill I was terrified what would happen when my abuser and others complicit in the abuse found out. Basically I got no response or a terrible response, and none of the help I needed, from my main abuser and the person enabling her.

Both my abuser when I showed my emotions as a child, and family members now when I try not to show my emotions, said/say that I am childish, spoiled and hurting others.

When I do express my emotions now, the reaction from my family is rarely positive. Occasionally it is, but often it isn’t. The fact that it fluctuates is really hard to deal with. But that’s another story for another post.

My abuser’s emotions could change in a couple of seconds so I had to be constantly on the alert and do what I could to stay safe. She was either emotionless in all her expressions, or furious, or distraught, or ridiculing me. Occasionally she was happy but you got the sense it was only on the surface and sometimes it seemed like a trick, especially when it quickly flipped to anger or ridicule. (Her severe psychotic episodes were somewhat different.) Whilst I had to be on the alert to her emotions, I didn’t learn anything from her about normal emotional expression.

My other immediate family members’ emotions are also hard for me to judge, in facial expressions and verbally. I can fail to spot the onset of anger with me. At other times I’m overwhelmed by how they express it. I often interpret anger when they are actually feeling concern or upset. I interpret disinterest or rejection when they say there is none there.

So…. on the whole that does seem quite messed up, doesn’t it!?

To be continued in Part 3 (which will be what I thought I was going to write about originally!)

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

The guilt I feel when I’m met with no response – Part 1

I was reading about how people with borderline personality disorder interpret emotion in facial expressions. I came across a study that had found that people with BPD are quite similar to people without any personality disorder in how we perceive emotions in facial expressions, however, those of us with BPD are likely to perceive neutral facial expressions as communicating “negative” emotions*. If someone is not displaying a positive feeling in their expression, we are likely to interpret a negative feeling. Of course, facial expressions are a somewhat personal and subjective thing. Additionally, I am not sure whether the finding was that we tend to interpret the perceived negative emotion as directed at us (eg the person is fed up with us) or as a non-personally-directed emotion (eg the person is sad, the person is frustrated after a bad day). Perhaps the study didn’t differentiate. I must try to revisit the study online and I’ll post a link in the comments if I find it.

Two things rang true to me. First I agree that I’m likely to infer from an expression that isn’t warm / positive that the person feels negatively. I’m not sure whether I actually see the expression as negative, or know it’s neutral (maybe “not letting anything on”) but a neutral expression for me means the person’s feeling is negative. Second, once I interpret a negative emotion (from whatever expression) I will usually be absolutely sure it’s directed at or because of me. Even if there are abundant clues that it’s because of something else, even if logically it can’t be because of me, this is my default assumption. Cue massive guilt and a desperate urgency to put things right. My first thoughts, my deepest emotions, my bodily reactions, are all based on that. Even flashbacks or memories involving deep guilt (where I know I hurt someone in the past) can follow.

This can all happen before any words are spoken.

However, I do the equivalent with speech and writing too. If anything is left open, ambiguous or ignored, I often feel I’ve done something wrong, or caused irritation or anger or displeasure, or that the person doesn’t believe me.

To be continued in Part 2.

* Note: by “negative” I mean feelings like sad, angry and so on. I don’t like using the word “negative” as it suggests something wrong with the feeling. This isn’t what I mean. All feelings are valid. I couldn’t think of another word. Perhaps “unhappy”?

Panic about planning

My partner and I had to go into town today to buy some items for Easter and for volunteer work next week; also to meet a friend for coffee. There were 5 items on the list, to be bought in a couple of different shops.

Why did I go into a full panic attack?!

The task seemed completely insurmountable, more and more insurmountable as the minutes passed; and the more insurmountable it seemed, the angrier I got with myself. If it hadn’t been for my partner I would not have left the house. I’d have hidden away under my blanket at home. Yes, like a three year old.

I could not make any decision on where to go. Nowhere would have everything. There was a potential problem with every potential store we could go to. There was a reason not to go to this or that place, but also to go to this or that same place. I was exhausted. I wanted sleep. But I had to get everything on the list or I’d let people down at work. If I did go, what order should I go to different shops? All the possibilities made a desperate screaming noise in my head and it was impossible to choose and any choice felt disastrous.

Why? Why am I so unable to cope with the simplest choice and task? Decisions are always harder than I think they should be but not usually this bad.

There seemed to be too many combinations of possible outcomes to make a choice but I don’t know why this was so paralysing. Why there was so much noise and crushing pressure in my head. My reaction to not being able to choose was very much a child’s – want to stop, want to hide and so on. Had I dissociated and my little-child-self was in the fore and unable to cope with the decision-making? Or is my adult self so overwhelmed I can’t go through a normal choice process? Or both….

My partner made the choice in the end. We made it out. I had two other near panic attacks when things went wrong while we were out. We were glad to see our friend. I’m home now, utterly wiped out, pain off the scale. On days like this I’m astounded my partner wants to be with me.

Ginny xxx

For you alone and all of you

Today is Good Friday. Today at 3pm we commemorate Our Lord Jesus’ passion and death for us on the cross.

It is more than a commemoration. As we pray, as we venerate the cross, as we approach the altar and receive Jesus, Body and Blood given for us, we take part in the sacrifice He makes for us and the redemption that flows from His Sacred Heart.

On a Good Friday several years ago, the Priest gave the briefest and possibly most powerful sermon I have ever heard. After the reading of the narrative of Christ’s Passion he simply said: Jesus did this for you, and He would have done it for only you. That very simple amazing truth about the cross lifted me right into the arms of Our Lord.

At the Cross, if I only stop there and look at my Jesus, there is no hiding and no pride. None of my sin, need, failure, weakness, pain, despair, is bigger than what He did on the Cross. And none of my pain, longing or grief is too small or stupid for Jesus to care about either, even the things I try to hide from everyone because I feel they are so childish or bad. Jesus did this for me and for all of me.

It is really hard for me to comprehend a love that wants all of me. So often I set myself apart, sure that this love cannot be for me really because I am too bad inside, sure of an angry God and that I deserve punishment. As a child my abusers convinced me utterly of my evil, the awful things I did and would do and the awful intentions and desires that were inside me. They set up a world where I believed they were the only ones who knew the terrible person I really was and the only ones who could stop the terrible consequences if I did what they demanded. They proclaimed their love for me but looking back I don’t know how I understood this love or how the supposed love was shown. In a way might it have been simpler if they just outright hated me?!

The understanding of me and of love that this left me with is so far from the love of God. He created us in His image. When we messed up, He sent His Son Jesus, right into our dark and confused world, drawing us back to follow Him to God the Father. He didn’t demand our perfection. Rather the opposite. He takes on all our imperfection, suffers and dies for us, and rises again, so that weak as we are we can do the same and follow Him to His Father’s house. The fact Jesus wants me, only me, all of me, is something it will take me a long long time to truly understand. The Cross is a good place to start and ask Jesus for the grace for His truth to replace the lies and confusion in my heart, so that I can lay down all of me and let Him love me, even though for all the years I have so wanted to believe, I don’t know yet what this kind of love is.

My prayer for you today is that Jesus show you tenderly how He loves all of you.

Ginny xxx

With thanks:

Image 1 from Mount Carmel Edmonton

Image 2 from Slideshare.net

Image 3 with thanks to Bertha Chelemu from Sermon quotes.com