Tag: physical health

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

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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

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

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

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

Q – “Have you got your hearing aids in?” A – “Pardon?”

I thought I was losing my hearing. Over the past 2 years or so, I’ve found myself asking people to repeat themselves more and more often. I noticed it particularly when I was working in the department store. What customers said came over as a jumble of sound to me, often as though far away, or sometimes I’d miss it entirely. At the day centre where I volunteer, a couple of the elderly clients remarked that my hearing was terrible an I needed a test. Discussing this with a friend, she commented that she’d long thought that my hearing was worse on the right side.

So I booked a check up and hearing test.

I had my ears checked and syringed. Nothing remarkable was found. No mountainous heap of gunk blocking my ears 🤪.

I had the hearing test.

Everything came back normal.

What is happening?

I’m left thinking that my hearing “disturbances” are to do with attention, dissociation absences, or the effects of overwhelming anxiety. Certainly, high anxiety affects my attention span and my memory. I can talk to someone but not take it in, or not remember what someone has said. Dissociation definitely affects my memory and I lose big chunks of time, not knowing what I’ve done whilst I’ve been gone. If I’m very emotional, I may be unable to remember events before and after the time of heightened emotion.

Is my weird hearing loss / confusion also because of anxiety, distress or dissociated absences? So not only is my memory affected, but also the information does not come into my brain normally in the first place?

Does anyone else have this problem?

Whatever it is, it’s scary. It disconnects me from the people around me, as if I’m floating in a vacuum or surrounded in bubble wrap. Sound doesn’t pass through the bubble wrap wall at all, or if it does, it’s chaotic noise that’s very unsettling deep into my mind and body. It makes me scared and I just want to get away.

Maybe it gives me some insight into what it’s like for people who live with deafness.

Ginny xxx

Voids between my mind and others’ minds

I feel so sad and I’m doubting my mind. I clashed with someone I care about. It doesn’t feel right to put the details here much as I want to. Basically I felt we need to make a fact very clear to someone we are working with, a fact that ought to have been made clear from the start. In itself the fact isn’t right or wrong but it does totally change what we are offering the person and what they will expect and it’s absolutely necessary to say it. The person I clashed with thinks there’s no need to say it, it doesn’t change anything, nothing was ever promised. I tried to explain what I believe and he said he would write off working with the person completely.

There’s more to it but that’s all I can say here.

It sounds like a tiny thing but it’s shaken me and got me lost about how I see things and how others see them and the gulf between that. What I see as a clear duty when others don’t. What I expect. How I deal with uncertainty (rather, don’t deal with it). The gap there is between my mind and the people I care about. It’s brought back the ever-near memories of people telling me I expect other people to look after me, or that I didn’t keep my word, my responsibilities, when I was doing all I could to get it right for everyone and hurting myself to punish myself for my failings and still wasn’t good enough.

I’m sad. It probably doesn’t help I’ve been ill physically this weekend.

I know this blog has been too down and negative lately and I need to change that. I’m sorry.

Ginny xxx

Facing how much I need to lose

Warning: this post contains discussion of weight, weight loss, body image and eating disorders.

I have lost control of my eating and my body size completely. I’m the heaviest I’ve ever been. I’m disgusted at myself, expanding and ballooning. The voices love it – greedy, pig, ugly, foul, repulsive… we’ll always know how bad you really are… images of rotten evil and greed bursting out of my skin… cut it all off, cut it out… 50 kilos. Lose 50 kilos then keep going.

It’s so much and so unattainable I let the despair close round me. It’s cold and numb first, then comes the bingeing. I don’t know if it’s a result of the despair. Often it’s a result of hunger that won’t be satisfied and demands more and more, til I get rid of it by purging til it hurts so much.

I am fat and more than fat.

I want to lose 50kg. I have the idea that then I could look at myself without so much hate and disgust and then the voices might be satisfied for a while, if only I could maintain it. Objectively I know losing 50kg would be too much and would put me in the anorexic weight range. I know losing 40kg would put me at the very bottom of the healthy weight range. I desperately want this then desperately want those 10kg more, to get rid of the fat greedy consuming thing inside me. To get rid of the evil inside me. Then I could look at myself. Then I’d have control back. Then maybe it would stop. Please. Please would it stop.

Why can’t I just do it, like I always did before? Why have I lost control?

I’m trying to be objective. Trying to think about losing 20kg first. Trying to focus on goals, not specific weight targets week by week but on good things that are coming and that will be even better if I lose the weight – going abroad in February for my fiancé’s work, being able to do more of my physiotherapy exercises, our upcoming wedding, and so on. Trying to remember that my fiancé does not think I’m disgusting or greedy or bad or anything else the voices tell me, and that he loves me and does not require me to change. Yet I have his support to lose some weight to take care of my health and that’s a wonderful help.

I’m going to try to identify specific actions I can take to stop bingeing and start losing weight.

Looking objectively, why do I think my weight has gone up out of control?

  1. Greatly reduced mobility because of my degenerative health conditions getting worse. I used to walk loads a few years ago but now I need a wheelchair.
  2. My medications – quetiapine and other daily medications I take increase my appetite and affect metabolism and cause a lot of weight gain.
  3. Binge eating repeatedly on sugary foods and other carbohydrates. Insatiable hunger. Yes I frequently purge or restrict after but it can’t get rid of everything and it’s dangerous in itself.
  4. Relying more on convenience foods because I’m not well enough to cook and at times when I’ve been really short of money.

How can I change this?

  1. I can’t exercise in the usual sense of the word but I can prioritise my physio exercises and then when I’ve lost some weight, going swimming. I’m changing my daily routine to make sure I fit these in.
  2. I can’t change my medications, at least not short term.
  3. I will not keep trigger foods in the house. At first I will greatly restrict the food I have in the house so there is literally nothing to binge on. I can’t leave the house unaided because of my health so won’t be able to go and buy more. My fiancé will help me get small quantities of non triggering foods and occasional treats only. I’m amazingly fortunate to have his help. This isn’t a permanent solution but might help for the first couple of weeks.
  4. Though I still need to rely on convenience foods because of my disabilities, I will stay within a daily calorie limit.
  5. I will research any advice I can find for coping with binge eating disorder.

How can I keep the rational part of me in control rather than whatever drives the insatiable hunger? I really don’t know what drives it. When I was anorexic I had found something that shut off the hunger, but I don’t know what it was. The disgust I felt for myself then and the disgust I feel for myself now are pretty similar. In fact I feel more disgust for myself now. If disgust doesn’t shut the hunger off, what does? I think if I knew that, it would stop me bingeing.

Ginny xxx

House clearance

(So I just wrote this, pressed publish, got confirmation it was published but then it vanished. Aargh. Here we go again. Apologies if it has only vanished for me and you can still see it, in which case this is duplication!)

I’ve just had a house clearance firm come to give me a quote. Years of hoarding, clutter, old and broken furniture, cupboards of near useless and unnecessary items, have all got too much. I’ve tried and failed repeatedly to get through it myself and with my partner R’s amazing help. We can’t manage it. As my physical health has got worse, I can’t manage day to day or keep on top of housework and daily living like this. It’s no nice place for R to spend time either (we are not living together but of course he comes here most days). So it’s time to change this. I got the quote (yikes £££) today and next week it’ll be done. I feel intensely guilty and anxious but also desperate for the resolution.

Ginny xxx