Month: March 2017

Hospital

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

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

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

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

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

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

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

Ginny xxx

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Descent into emergency

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

6.45pm

I feel so scared and powerless right now.

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

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

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

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

8.40pm

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

9.15pm

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

9.25pm

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

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

Ginny xxx

 

 

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

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

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

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

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

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

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

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

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

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

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

Ginny xxx

 

Needing too much again

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

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

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

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

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

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

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

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

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

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

Ginny xxx

Mental wellbeing scales…. What do you think?

This is the SWEMWBS. Er, bless you?! No, it stands for the “Short Warwick Edinburgh Mental Well-Being Scale” Maybe the longest possible name for the shortest questionnaire!

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I was given a copy of this to fill out on two occasions recently: when registering with a mental health charity locally in the hope of accessing a community-based personality disorders support group, and at the first session with my Recovery Coach. I’ve lost count of the number of questionnaires of this ilk that I’ve done since my mental health conditions wete first diagnosed, for example one or two page scales at the GP Surgery to rate anxiety and depression, to 10 page booklets at the personality disorders service, repeated to examine changes through my treatment. The SWEMWBS is by far the shortest of all these, which could be a strength. I still found it tricky partly as to my mind it seems to have gone to the other, overly simple, extreme. However that does all depend on what you want to measure and why. I may have found it tricky because it didn’t match what I wanted to express. What I want to express might not be what services, support agencies and so on, wish to measure. Arguably, services do need to make sure there is the opportunity for us as patients / clients / service users to express what we feel is most important and often this can’t be slotted into a tick box or numerical scale. I’ve been fortunate that people working with me have given time and importance to that which doesn’t fit into these kind of measures.

As part of their work, a member of my family is exploring initiatives to support and promote mental wellbeing. They are looking at using scales like the SWEMWBS to measure how people feel across participating in activities, and whether the way they feel changes. The activities could be social groups, exploring nature together, art and art appreciation, developing and sharing particular skills – generally community based projects. Reporting how you feel on long complex scales proved off putting and daunting, understandably. In my opinion, there is a certain conflict between the fact that the most respectful and detailed way to find out how someone is feeling may be simply having a discussion with no constraints on how they express themselves; whilst at the same time, to analyse whether a particular activity or therapy has helped, there does need to be some form of quantifiable (so usually numerical) analysis of changes in how someone feels.

My family member asked me for thoughts and feedback on the above and to share my experience on how I find using scales like the SWEMWBS. How meaningful is it? How does it compare to unrestricted feedback where we can express freely verbally or in writing how we feel?

I’d be interested to know readers’ thoughts if you have any you would like to share, whether or not you’ve completed these kind of scales yourself.

I could pass these thoughts on anonymously if you wished, or not if you do not wish.

Thank you!!

Ginny xxx

The Short Warwick Edinburgh Mental Well-Being Scale is copyright NHS Health Scotland, The University of Edinburgh, The University of Warwick (2008).

What is it okay to protect for ourselves?

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

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

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

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

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

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

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

Ginny xxx

Failing as a friend

I’m failing so much as a friend. My friend R is going through a terrible situation, or many terrible situations. Daily there seems to be the next piece of devastating news.

He needs me. He trusts me.

I so want to be there. Be generous. Love. Hope. Be patient. Do every practical thing I can and be there and listen. Be warm and somehow say something, pray something, still be there when he’s losing strength.

I’m scared. Scared I’m watching him die.

Why am I failing in compassion? Right when it’s most needed? Why am I feeling dread and frustration and exhaustion? Struggling with freezing when I want to respond compassionately? Like my brain is just shutting down in overload. I need to be there but I’m overwhelmed with pain for him, but also overwhelmed completely by his need.

I’m scared I’m the only one he trusts, only one he speaks to about certain things. It’s dangerous.

I can’t be this.

Why am I getting unable to respond or even angry? Explosive inside? I’m failing at the most important things in friendship, love and compassion.

My chest hurts. Something is rushing in my ears and I’m dizzy. I thought I was going to faint earlier….

Ginny xxx