Category: The emotional and the physical

In Athens

In Athens

I thought I’d share with you some of the beautiful things we’ve seen and experienced in Athens so far.

There are countless interesting churches. In the rear of this picture is the main Greek Orthodox metropolitan cathedral, The Cathedral of the Annunciation, recently refurbished, whilst in the foreground is a centuries-old church known as Little Metropolitan, really St Eleftherios Church (which we haven’t managed to go into yet as it is often shut, unusually for this area). On our last trip here my fiancé and I prayed outside under the moonlight, giving thanks for each other and asking God’s guidance during our engagement.

This past Sunday we were able to go to Mass at the Catholic Cathedral of St Dionysus where we found this very peaceful portrayal of St Joseph and the Christ Child.

There are several people we need to buy gifts for and also we are going to bring some non-perishable Greek foods home to form part of the meal after our wedding. So we went through the Monastiriki which is a set of narrow, winding streets packed with little open-fronted shops selling jewellery, leather bags and sandals, T-shirts, traditional dresses and embroidered shirts, icons, crosses, ornately covered Bibles, food (olives, baklava, Turkish delight, sweets, herbs, stuffed vine leaves, olive oil), drinks (lots and lots of Ouzo and Metaxa brandy miniatures), replicas of Ancient Greek artefacts and statues, toys, and countless souvenirs (some tackier than others – apparently you can fit a picture of the Parthenon onto everything from a teacup to a wooden replica of a certain part of the male anatomy!!).

It’s worth looking up, as well as at the shop fronts, because there are often pretty balconies above you and twisting grapevines where doves sometimes sit.

With new sensory experiences around all day long, I have needed to balance busy hours with down time, and we are so fortunate to have a pool at the hotel to cool down or rest beside.

My fiancé has been utterly impressively amazing at getting me and my wheelchair around – not at all easy when the streets are cobbled and up / downhill. I’ve been really concerned he will wear himself out caring for me. I walk where I possibly can but it is not much at all. My fiancé’s love is a deep blessing I never could have imagined existing. I want to help him rest and care for his own needs too.

I will post another Greece update with more photos soon.

Ginny xxx

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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

“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

Reforming my food intake – eating disorders v changes for healing

TRIGGER WARNING: this post discusses diet, eating disorders and food restrictions.

I was back at hospital a couple of weeks ago with another bowel pseudo obstruction, with a lot of pain and bleeding. Scary. Thanks be to God this was not as serious as the obstruction I had last year. However over the past year on the whole I have had a marked increase in gastric symptoms which are part of my POTS and Ehlers Danlos Syndrome. It’s painful and disruptive. Possibly it’s also doing the rest of my body no good if I’m having inflammation or not absorbing nutrients properly.

I’ve decided to change how I eat along the lines of what I’ve read can help people with my conditions. It will involve a lot of protein, cutting right back on wheat and sugars (this will be hard for me!) and eliminating junk food. It will be quite bland at first whilst I find out what foods work for me or not. I don’t have celiacs but people with POTS and EDS can have problems with wheat that aren’t celiacs.

I’m conflicted because any strict diet, food restriction or elimination is triggering to my eating disordered thoughts and voices. Moreover I can’t deny that I’m hoping that my change in diet will lead me to get back control of my hunger, cravings and bingeing and that I’ll lose weight. I really want to sort my stomach problems but control and losing weight are hugely strong desires too. I’m overweight and repulsed at myself.

Possibly what I’m doing isn’t what professionals would think is a good idea if you have bulimia, binge eating disorder or a history of anorexia. Usually elimination of foods isn’t advised and you are supposed to listen to your body’s cues. I have no idea how to safely listen to my body’s cues. It seems to constantly scream “hungry!” In a way, am I listening to my body by recognising my gastric issues and the fact that my current eating is doing me no good? But I’m furious with myself for the binges and constantly want to punish myself. The diet that I’m going to be following will cut out a lot of foods I binge on. Will that stop my binges being triggered? I’m hoping so but I just feel I know I’ll lose control.

I’m trying to think of the changes as a long term way of eating, making it work for me throughout my lifetime, not a fad diet; also I’m trying to remember the fact my body needs this to get better.

Ginny xxx

Looking for an app to track mood and pain

I am seeing a psychologist at the pain clinic for a short number of sessions. When I was first sent an appointment to do therapy I was really worried and almost angry about it, feeling I’d had enough of therapy in other services where I couldn’t trust the therapists or the community team and I couldn’t risk making myself vulnerable again. On top of that I was sure the therapy would be from the point of view that nothing is wrong with me, the pain I have is unnecessary and my fault because I’ve rested too much and not pushed myself enough, which is an attitude I’ve encountered too many times on so-called pain management courses. Amazingly it has turned out to be a very different experience.

I don’t tend to find pain is terribly related to my mood, beyond the fact that I’m more anxious and low when the pain is worse. It’s also connected to flashbacks but I don’t quite know how. We identified in therapy today that I find awareness of my body very difficult. Maybe that is common in personality disorder and certainly in dissociative identity disorder.

I want to try tracking my pain and my mood together to see if this may show up any links I’m not aware of. I’ve done the two separately before as part of learning to pace activity (I did not find the recording gave me any new insights) but I’ve not really done the two together, not over an extended period anyway.

Phone apps exist to track your mood but I’m looking for an app that tracks mood and pain. Ideally I’d like an app where I could record a numerical score for my pain and my mood every couple of hours through the day, with space to make a brief note if something very significant happened (for example if I have flashbacks or an event triggers traumatic memories or dissociation).

Have you used an app like this and did you learn from it? Any recommendations would be very helpful.

Ginny xx

The worst thing they can make you fear

TRIGGER WARNING for discussion of abuse and control

The worst thing my abuser made me fear was not what she would do to me. Actually I accepted that without question.

The worst thing to be afraid of is myself. That’s what my abuser made me most afraid of. Me. What I really am. What I can’t stop. What I would do to her. What I would do to everyone I loved. What everyone would find out in the end about me. What the people watching thought and how they’d take my loved ones away because of me (the watchers didn’t exist, I’m told, but it was too deeply engrained for that to make any difference now).

I was supposed to love my abuser, and that made it worse, because the revulsion I felt showed I should be repulsed at myself.

When rarely, I told what had happened, nobody heard or nobody believed, but she’d already told me they wouldn’t.

I escaped from my abuser, in physical terms. And I know I’m very fortunate because so many don’t.

The one thing we can certainly never ever escape from is ourselves. The one way my abuser ensured her power over my present and future as well as my past is this terror of myself. Add to that my “alters” (the child that screams unendingly because no-one heard her when it mattered; the violent lunatic full of anger as I’m tricked again and again by those who supposedly love me) – and my abuser is not only in my mind now but sickeningly in every current relationship and interaction.

I can feel her laughter and ridicule now. I feel surrounded.

X