Tag: work

A question for bloggers, and the outline of my blog

A question for bloggers, and the outline of my blog

A special thank you to those of you who have commented on what posting schedule you’d like to see and those who have shown their support. Today I’m writing to update you on the new outline and posting schedule I’ve decided on; also to ask a question to other bloggers.

From your responses so far to my recent posts, it seems that topics you would particularly like me to write on are eating disorders and life with / after trauma and abuse. I will make these topics main categories on this blog. The main categories will be: PTSD (including life with and after abuse and other trauma); eating disorders and body image; borderline personality disorder and dissociative disorders; mental health and finances; mental health and work; living with physical health disabilities as well as mental health conditions; question time (writing in response to questions you and others have asked me – this will of course encompass a wide range of aspects of mental health conditions and cross over with other categories on this blog); in the future I want to add a “help” section where I will outline coping strategies that help me, mainly regarding PTSD for instance things you can do that may help during a flashback.

The posting schedule I’m going to start off with is one weekly journal-style post and one weekly post on one of the above topics. I may be able to increase this but I think this is a reasonable aim to begin with. As mentioned before I will post outside this schedule at times. I think I need to choose what days of the week I will make my two regular posts. I’m thinking Wednesdays and Saturdays but I may change this – I’ll let you know when I next write.

You will have noticed the change of name to Dignity Beyond Trauma and at the end of the week I will write a post explaining the new name.

I have upgraded my site plan so will be giving this site a new and hopefully more accessible look over the next few days.

Finally, I have a question for other bloggers. Do you use another form of social media as well as your blog, for example Instagram or Twitter? If so what benefits do you feel this brings to you and to your readers? What should one consider before linking your blog to another kind of social media? It’s something I’ve been considering doing; I am not going to attempt it right now as I need to focus on sorting this blog but I am interested in the future. I’d be very grateful to know how it worked out for you. Thank you in advance.

Ginny xxx

If he doesn’t realise he’s being abused, what do I do?

I’ve gone too long not saying anything. I need to talk to my dad about what my step mother is doing to him and to me.

What happened to my other family member, who was being abused for months with no-one’s knowledge, has made it clearer to me that I need to speak out. I know what can go under the radar; how for those closely involved in the abuser’s world, it can be impossible to see what is happening. And look what went under the radar when I was abused as a child. I’m trying to separate myself from my anger about all the times I “should” have been helped. Right now it just shows me how important it is to not let it go by when you see abuse happening. Another event that has made it clearer to me that I need to speak out is that third parties have commented on my step mum’s behaviour and how my dad is and how another vulnerable member of the family is treated – this was not based on what I told them but on what they themselves observed. It isn’t just me being crazy, or misinterpreting because I’m too sensitive because of my early life experiences, or imagining it, or because I subconsciously resent my step mother so somehow want bad towards her. It’s really happening. Then on top of this, my social worker and a psychologist I have been seeing at the pain clinic have both said to me that for my wellbeing the only course of action may be to restrict contact with my step mother. This is on the basis of the limited number of incidents I’ve described to them from the past 7 years or longer.

It’s really happening. It’s sustained (worsened actually) over time. My dad has no idea or if he does see it wants or needs to ignore it (because he thinks it’s normal? Because he thinks he deserves it? Because he doesn’t know what to do?). My step mum has been able to convince other members of the family that she is perfect, blameless, that she is the one being mistreated, that I am the one mistreating her or causing the problems, that I am the one doing wrong to my dad, that another person in the family is again a cause of problems and to be ostracised (and she has orchestrated this ostracisation), when actually they are vulnerable and desperately in need of help.

As well as being angry with my step mum, I am angry with my dad. This is totally wrong. Misplaced. I feel furious anger at my step mother’s abuse going on unseen and unchecked, even when it is done in plain sight. Why do I have any anger towards my dad? My anger should be only towards her, and the immense control she exerts and deception she weaves, which allows her behaviour to be unacknowledged, unnoticed or excused. That’s all part of her abusing. Does abusers’ behaviour somehow get you angry with the wrong people too? Or is it because all the feelings are brought up from when I was a child needing my dad to help me, trying to tell him what she was doing? Because I can’t really understand why he couldn’t see what my mother was doing to me and what she was involving him in back then? He was deceived by her but he also did wrong, but that’s another story.

However, I am left with the fact that again he’s in a relationship where he and others are being abused, and either he can’t see that it’s happening or he can’t / won’t take action. I don’t want that to repeat for him, for anyone else I care about or for me. It went on 30 years in his relationship with my mother. I don’t want him to go through more years of abuse, never taking action or only taking action when much more has been lost. He is fit but not so young anymore and if he were only to realise what’s happening when he’s elderly, it would seem all the sadder.

I can’t force my dad to take action. I can’t pull him free from the situation. What I can do now, which I could not do as a child, is try to openly tell him what I’ve observed and what I’m worried about. I can also tell him how she behaves to me. It’s likely he won’t believe me or will refuse to acknowledge it. This is what has happened when I’ve told him previously what my step mum has been doing and it’s what happened when I told him what my mother was doing when I was a child. But now I’m not a child. My safety and my world do not depend on him believing and saving me. Sadly, his safety does depend on him acknowledging what is happening to him.

How do I help him do this? How do I raise what is happening without him being so hurt and angry that I’m saying it that there is no chance he will be able to reflect on how she’s treating him and how he’s feeling? How do I do it without him stopping talking to me at all? Then there would be no chance I can help him. If he just utterly blanks it all and changes the subject, or leaves (both have happened before), what then?

Whilst he is not isolated as we were when I was growing up, in a remote village in a shut up house, nobody allowed in, no relationships allowed outside the home, he is isolated in a different way. Apart from his work, the world he’s in is still hers. Her part of the world, her house then the house she chose, her choice of leisure activities, her friends. Almost everyone he has contact with outside his work is her world. Potentially controlled by her. I can think of nothing he does separate from her, apart from his work. I can’t think of any friend he has contact with who is not first hers. No way he spends any leisure time away from her, except for the rare occasions she goes away on holiday without him for a couple of days, or the rarer occasions he comes to see me without her. It seems there would be nothing and no-one to help him move away from her control.

This is worse than I thought.

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

Easter crafts – letting the light shine through

We made stained glass window pictures this week at the day centre where I volunteer with elderly people. In a small group we made three pictures – loaves and fish, the Cross and the sun rising above a tomb with the stone rolled away. Here’s the Cross (please excuse the scribbling where I’ve removed anything that could have identified the location; I’m probably being over-cautious but still…):

I made the templates and then we laid them on laminator pages, filled the designs in with tissue papers then added the top sheet and laminated them. This gave them a shiny finish. Once cut out we attached them to window panes to let the light shine through. My inspiration came from a YouTube video of Christian seasonal craft ideas.

It was trickier to do than I’d expected and tested my patience! The tissue paper did not stay in place easily especially when people with limited movement were handling it. Too easily it could be knocked, or the static between the tissue and the laminator sheets pulled pieces out of place. Surprisingly perhaps, all the clients enjoyed it and persevered. It helped that this week everyone seemed curious and wanted to be involved. With clients who often feel depressed or otherwise unwell, this isn’t always the case. This week the clients’ enjoyment encouraged me to keep going even when I thought everything was going to go pear shaped.

Thanks to one of the other staff members we were able to read a bit about how stained glass was and is made and where the colours come from.

We were very happy to do an activity strongly rooted in the hope of Easter. Of course compassion and generosity and love underly everything we do with the clients and we almost always learn, discover and receive blessings as well. However we wanted to do something explicitly exploring God’s gift to us at Easter. In our pictures, each side of the central Cross, the bread and fish represent Jesus’ presence amongst us, His feeding us, His Body given for us 2000 years ago and still on all the altars of the world; the empty tomb and rising sun represent God’s Son Jesus rising from the dead, as He is with us on earth so He is lifting us up to Heaven to be with Him where He is gone. The Cross itself we decorated in bright colours not dark. The Cross is deepest suffering but also and inseparably, our only hope, because there Jesus restored the ruptured relationship between God and man, so that we can now joyfully call Him Heavenly Father. There God’s light shines through to heal our broken hearts.

This Lent time seems to be passing faster and faster for me and I’ve felt I’m grasping at desperate moments to pray between crises, responsibilities, pain and dissociation. It was important to me to have this little time trying to reflect on the Easter promise with those Jesus loves so much, the frail and lonely. Thank you, Lord.

I’m praying for moments of peace throughout your every day.

Ginny xxx

Frozen, slipping, returning

I’ve a list of things I need to do. Call my energy supplier as my current gas and electricity plan is coming to an end. Write Christmas thank you notes (I always have them done by New Year so this is late for me). Type up notes for some admin I do to help my fiancé’s work. Read the material to prepare for a meeting on Friday. Clear up the house. Sort the TV licence payment.

Why do I feel like I’m drowning… no, stuck in a block of ice too frozen cold to move again? I can’t do any of it. Waves of exhaustion, vacancy, cold, fear, dread, crash over me even though I can’t find any immediate cause. I slip in and out of presence and dissociation. The guilt intensifies on every return.

My to-do list is an insignificant lot of things to most people, I know. I know if I told someone I am struggling with this they’d say it’s nothing and just day to day responsibilities. This brings back so many memories of times I’ve struggled before and family members have told me I have no responsibilities and I’m a spoiled brat. Here comes more guilt and fear wrenching inside.

What I have to do overwhelms me but it’s not really what overwhelms me – the waves, the cold, the dissociating and returning do. It hurts and takes all of me and if it weren’t for my fiancé I don’t think I’d be able to come back at all. I’d have no strength left.

Why now? When so much has been so good? (Ungrateful little brat, look what everyone’s done for you, why isn’t it enough – the voices scream, preventing me telling anyone about what’s happening because that’s what they’d say again.)

Is that just what trauma and depression and borderline do?

How can I try to escape from this ice and reach out and reach forward again? I know sometimes doing even the tiniest thing can make a difference at first. I forced myself to get up this morning, get dressed and put on makeup. Afterwards I was shaking and exhausted. Being more ill physically than usual doesn’t help. After some rest I made a little start on the paperwork I’ve just been sent that needs to be read for Friday. My mind was a blank for hours after that and I was gone for much of the time but at least I had achieved something not absolutely nothing. I’ll write this down in the journal I resolved to keep, to see if this helps me when I look back. I will be able to acknowledge what I did and somehow find a way to see good in this day and give thanks. Creativity sometimes breaks through the ice so I made a paper origami ball and did a few steps towards decorating the photo frame I’m giving my dad as one of his birthday presents. Then I really, really struggled with so much pain in my head and inside me, anxiety, hallucinations and unbearable voices and just… numbing cold.

I want to sleep now and I will soon and hope rest can shut off this state for a while. I don’t know if I believe even that right now. I forced myself to write this post bit by bit over a couple of hours because when I wake up tomorrow and read this, I’ll know I got through it thanks be to God, and something, however small, will be different in the morning.

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

 

Only sometimes – on uncertainty and friendships

I don’t think I cope well with “sometimes”.

In general, I don’t cope well with lots of uncertainties, or at least, not the same as other people do. It can be to do with situations and actions, like places I don’t know, or not being sure when I can leave a situation if I need to, or competing demands that mean I can’t give everything or everyone 100%, that can be scary. It can be when I’m trying to plan or decide something. So many different possibilities crowd my head and swim round, pulling me down til I can’t breathe and have to just stop because it’s too much to cope with. People on the outside of this see it as me being lazy or lacking any drive when inside I’m fighting the drowning. Above all it can be interpersonal yet related to what I am (where ultimately I can never ever be certain so always fear) , if people misunderstand me, if people perceive me or my actions very differently from what is going on inside me; worst of all the times I start to doubt my motivations, or intentions, what is most deeply in me really after all – the times I can never be certain enough that I’m not evil if I don’t punish and hurt myself, because the voice of my abuser always seems stronger and truer…

Other uncertainties don’t seem to bother me as much as other people suggest they should. I don’t know, for instance, what my work situation will be in a year, or 5 years. I don’t have a career plan set out. I have quite a lot of instability in this area, largely because of my current physical health. People have told me that it is wrong for someone of my age not to have ambition; that I’m irresponsible and spoiled; or the phrase that irritates me so immensely at the moment, that I have to be “moving forwards”. These uncertainties actually don’t seem to bother me as much as they bother other people. I do not want to be a burden, or unable to take responsibility for myself. I strongly want to be able to give. Beyond that, I don’t seem to have the plan that seems to be expected. Perhaps it’s because I have to take things a day or an hour at a time. It’s the only way to deal with the experiences and emotions I have right now and I have seen by God’s grace it can actually be a fruitful way; maybe the only fruitful way just now in my circumstances. Perhaps it’s because for so long I was numbed to what I was experiencing and feeling, and/or in the isolated world of my abuser’s creation and under her control, that I need to take things this way now. Perhaps it’s because seeing beyond this day or this hour really can be too much and too scary on the worst days, even inconceivable when everything is that much too raw (though, mercifully, these times have not been so intense recently). Perhaps it’s because I am encouraged by Our Lord’s assurance that it is not the grandeur and status of what we do but the love with which we do each and every deed that matters.

Where it comes to friendships, I really struggle with uncertainties and “sometimes”. It’s really important to me to be there for the other person. If I don’t hear from them, I worry a lot. I don’t form relationships easily and don’t let many people in. The people I do, I become attached to deeply. Certain people, occasionally, I come to care for deeply very quickly and trust them deeply, maybe too much too fast. Once I care for someone, I really want to support them, and I also really need them. It’s not needing them to do things for me constantly. I do not want to make demands. That’s actually something I feel very guilty if I do. It’s just – needing them. I need them there. I need to be there for them. I need things to be shared between us.

Because of this, I particularly struggle in relationships where  we are only in touch sometimes, only see each other sometimes. I see this is much more of a problem for me than other people. It’s as if I can’t cope with a relationship with gaps and breaks in the sharing. At the moment, I’m very upset over a relationship with a close – well, we used to be close, anyway – friend. We live in the same town but now see each other a handful of times a year if that. I saw her at the funeral last week but the last time we’d actually met before that was Easter. We text sporadically and email even less. From her point of view according to what she’s told me, nothing has changed between us, she still cares about me and it’s just a normal part of life and getting older that you no longer see friends often, she is busy with her family, Church, groups, volunteer work and other commitments and she just doesn’t have time to meet especially as my health means I can’t easily get out, and when we do meet however rare it is our friendship is the same. For me, everything has changed and our loss of contact is a huge hurt. There is a void for me because we no longer communicate to share what is happening in our lives. For me you cannot share across texts or emails what you can face to face. It’s just impossible to say a lot of the most painful things. It’s upsetting when I do share something upsetting, important or personal and there is just no response.

It would be a bit different if we had moved a long way away from each other and we had therefore built our relationship on sharing things in writing. The way it is, it feels like a loss. I don’t like to admit to it but it does feel that I’ve been rejected. It feels as if I’m trying all I can to be there, but she does not want me or need me and I do not fit in her life. It hurts more because it’s a time I am already feeling isolated, raw and need not to be alone. But there’s more to it than that. I risk acting as though I think she has an obligation to me or think she has to be doing things to help me. She really doesn’t and that’s not what I want.

I can’t cope with contact and sharing being only sometimes. With such absence and silence between times, the relationship is by no means the same to me. It almost hurts all the more when the other person then acts as though nothing has happened and the absence was unimportant or non-existent. This comes up again and again in relationships. Then I get told I’m too much, or that I need too much or expect too much from friends, that they are not my family and that they just can’t make that kind of commitment. I end up hurting even more than if the relationship had gone completely and I’ve probably ruined a lot of relationships because of it. Either I can’t take the pain or they can’t stand me and contact ceases totally.

Does anyone else find these “sometimes” relationships difficult? Do you maintain friendships where the contact you have is few and far between? If so does that change the friendship for you? Do others need people as I do? Need things to be shared?

Ginny xxx

 

 

A much bigger loss than they realise

When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.

With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.

I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.

We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.

My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.

Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.

All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.

Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.

First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.

This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.

And these areas are broad.  Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time.  Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.

Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.

It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.

Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.

I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.

In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.

This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.

Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.

If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.

Ginny xxx

Why did the goose cross the road, and other stories

Q – What’s the difference between a Scottish man with a slight cold and an English man with 7 days’ holiday?

A – One has a wee cough, the other has a week off.

I hear you groan 🙂 That was one of the first jokes I learnt to tell as a child. (The other was what do you call a lavatory that keeps coming back to you? – A loomerang. Yep sorry about that. …)

Moving swiftly on! I’ve just had a week off myself and go back to work tomorrow. It was exceptionally bad weather until Sunday afternoon. On the news they said it was colder in my region one day last week than it was on Christmas Day! That same day my bus was delayed because there was a flock of geese that had escaped onto the main road and caused pandemonium. The bus driver said it was a shame it wasn’t really Christmas as we’d have got rid of the problem quite quickly (goose anyone?!)

My friend came to stay for two nights. She was my first overnight guest since I moved to my flat over a year ago. It’s a big step on for me that I was able to have someone stay over. My anxiety has always previously been so high that I could not cope and had to be able to escape from company after a few hours. I did have times I struggled and I was very tired from trying to make sure I stayed “okay” but we had fun together. My friend is in her eighties – she’s my friend L’s nan and I’ve been blessed to come to know her family over the past few years. They really make me feel like an adopted family member. I’m so thankful for all of them. We don’t see each other as often as we’d like as we don’t live very close by anymore but still the friendships have stayed strong and readers of this blog will know that true lasting friendships are rare and precious to me.

Also in my week off I’ve been able to make an effort to get on top of housework and clear my very tiny garden which I had not cared for properly since the winter. I am not a gardener and don’t enjoy it but I’m thankful for my outside space and try to keep it tidy. It really is very small.

Dad came to visit yesterday afternoon.  We had a coffee and walked through the park in the sun back to my flat. We had pasta bolognese for lunch (second in my Ten Dishes challenge) and a good talk in the afternoon. He’d just been on holiday with my step mum which they’d enjoyed. I’m thankful that I feel closer to my dad again now and more able to be curious about his life and express how things really are in mine.

This coming week I need to start a creative project. One of my colleagues is retiring at the end of this month. My other colleagues and I are putting together a scrap / memento book as part of her leaving present. We are going to decorate a page each for her. Some people are sewing, some embroidery, some photo collages – I’m going to put together some decorative text and decoupage based around one of her favourite songs. Updates to follow!

I hope you’ve had a good day. What do you like to do in your holidays?

Ginny xxx

 

 

 

It just doesn’t stretch, whatever I do

I’m scared I’m so close to everything falling apart. Financially. But it feels like everything.

I got an automated voicemail message from my landlord telling me I’m to call them urgently to discuss “ways we can help you to pay your rent”. They had closed by the time I finished work so I have to wait til tomorrow to call them and find out exactly what it’s about but I know it will be about my rent arrears. I doubt they will be “helping” me pay, somehow! I know the fact of having to call them doesn’t instantly change anything but I’m really panicking.

I was struggling already today, feeling very sad after a difficult 1:1 therapy session on Monday, a friendship having broken down and a few other things. After getting this message I just wanted to crawl under my duvet, cry, shut off, everything and nothing…and the urge to cut is very strong but I’m trying to resist.

Nothing is working out. I got into arrears last year when I lost my job, wasn’t paid notice and holiday pay as expected, and my housing benefit didn’t come through for 10 weeks. Working part time I’ve been entitled to some housing benefit but my claim has been messed up, suspended, altered back and forth from start to finish and I’ve had more periods of weeks with no money coming in. I’ve been paying my rent, with great difficulty, but not able to clear the arrears.

Now they have stopped my housing benefit because my salary has increased by a few pence per hour. This leaves me unable to meet even the tightest budget. I do not have enough money to cover the bare minimun of rent, council tax, bills like electricity, telephone, prescriptions, travel to the hospital, some access to the internet and food (let alone any other expenses like buying clothes when needed, any longer distance travel, or socialising). I’ve cut back as much as I can, especially on food. I don’t make proper meals, just toast, cereal and cheap snacks. It makes me feel awful (plenty of guilt for bad fattening food) but I can’t afford anything else.

I know the arrears are my responsibility and I have to pay. I feel panic and guilt every day over them. I know that in the past when very unwell I made poor financial decisions and was irresponsible with money, which has contributed to why I don’t have savings. So has the fact that I’ve been too ill physically to work full time at several points in the last 10 years.

Part of what is so upsetting is that I am now doing all I can but I still can’t stretch to cover the tightest budget or see any way to change things. I am pushing myself as hard as I can to keep going to work. It’s very difficult mentally – and I’m sad that it is so hard to do it but that is the situation I have to accept right now. It’s very difficult physically too. The pain I’m in from the fibromyalgia, arthritis and so on has been increasing since I started and each day it gets harder to do certain things (going up and down stairs, staying on my feet for lengths of time, etc) and if it carries on it’ll get to a point the pain is too much or I can’t stand long enough or something like that. I hoped if I kept pushing I’d get better at dealing with it but that isn’t happening and instead everything is flaring up.

I really want to keep working. I’m blessed with kind and happy colleagues, a caring employer, a creative environment, varied days, lots to learn and so many good things. Psychologically this job is so much less stressful than the legal secretarial work I couldn’t cope with. There’s so much that should be positive that I don’t want to waste.

However I’m in a situation that I just can’t cover day to day living going forward let alone clear the arrears I owe. It shouldn’t be a reason to give up but when things seem to be falling apart anyway, it’s harder to keep pushing through the physical pain and mental struggle to keep working.

I feel really trapped because with the rent situation alone I think I’m going to end up losing my flat. I know the landlord, being a housing association, has given me more time with the arrears than many other landlords would. A private landlord would have thrown me out ages ago. I know that’s another way I’m fortunate. It’s my responsibility but I don’t know how I can or will be able to pay.

Even if I could clear the arrears  I don’t know how I’d pay the rent going forward. If I can’t,  I don’t know where I’d live because I have no money for a deposit to rent privately. If I went back to renting a room as a lodger my mental health would crash downhill but at this point I would have to be grateful for anything. If I lose this place and end up homeless I’d lose my job. I might anyway if my physical health keeps going down.

It’s horrible thinking even if I get evicted and lose my flat, I don’t know how I’ll change my situation. It’s horrible that trying as hard as I can to do the work I can, I’m not able to live on what I earn and I’m assessed not to be entitled to any benefits despite this. I want to work as much as I can but I’m actually in a worse situation, it appears, than if I were not working at all signed off sick. My rent and council tax would then be covered by benefits. Not that that would help with the arrears but it would at least cover rent going forward. The system says it shouldn’t happen that you are worse off working than not, but it does. I’m actually put into a situation where doing the most work I can means I’m left with not enough to live.

I was referred well over two weeks ago to an organisation that would help me sort all this out and talk to my landlord. I was supposed to have been seen by them within two weeks. I chased up as I hadn’t heard, only to find out they said they had not received my referral from the support worker. It had got lost in the secure email system somewhere,  ironically. It has been sent to them again but now they are not likely to see me til after my operation.

I have no idea what to do. There are so many “if”s and a spiraling whirl of consequences that make it feel that everything’s already falling apart.

I don’t want to make out I have it harder than the next person. I know so many people are in this situation. I know I have to deal with it. It’s a time I wish someone could catch me when I’m falling like this but I know that’s nobody’s responsibility. I’m scared and everything’s already unravelling inside.i suppose I have to try not to listen to the spirals in my head until at least after I’ve spoken to my landlord tomorrow.

Ginny xxx