Tag: recovery

The peculiar significance of treacle

Every year I forget how evocative certain Christmas smells are. Not just the more obvious things like candles and oranges and mincemeat and brandy, but certain specifics. It was black treacle and spices the other day, as I was making gingerbread dough. Suddenly as I counted out the syrupy spoonfuls I was taken back to being stood in front of another cooker, aged maybe 7, stirring the pan dissolving the sugars, with my mother watching. Chain smoking, of course. A knot of emotions expanded inside me as they did then. Excitement for Christmas. Some kind of enjoyment of doing a grown up thing. Delight at wanting to make pretty biscuits. Wanting to get it right and please my mother…. well, the desperate need to get it right, impeccably following the process she had shown me. That meant tenterhooks and anxiety and churning emotions, too often teetering on the edge of me ruining everything again (I thought). One mistake, one deviation from her instructions, her watching would explode into anger, ridicule, accusations and threats. Hours of shouting and violence would follow. And everything, I had made her do, and each time I’d have that sick terror inside that this time it was over and the threats were being fulfilled. Looking back and seeing how little was needed to tip us into that disaster, it’s bizarre. Laying a biscuit onto the baking tray in the “wrong” way (ie not the precise arrangement she required), not getting the bow on a package right fast enough, touching the wrong switch on the oven – even simply letting any of my anxiety show. It sounds almost as if it should be funny. But it isn’t funny when someone has you isolated, under their power and in fear; not in fear of them but in fear of yourself. Because one sure thing to me at the time was that it was my fault.

So, standing there measuring the treacle it all came back. As I’ve been making the biscuits over the last day or so, I keep being catapulted into so many emotions and suddenly reliving snatches of good and bad … And to tell the truth I’ve been pulled into the bad too much. Exhausted.

I’m fighting it, because there’s no way my abuser’s having this Christmas. This Christmas is for God and the present and my fiancé and it’s about all the good we can do and are thankful for today. I speak briefly, quietly to God as I roll the dough, cut, bake , ice, package these cookies. I’m pushing through the dissociation to do all I can to hope for this Christmas and for every flashback find twice as much I’m thankful for today.

Ginny xxx

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House clearance

The house clearance turned out to be more emotional than I expected. The small local firm that did it were very good. Three guys came in a big van and 2 hours later I was looking at my emptied home. Unfortunately I was also looking at the large patch of hairball sick the cat had left under the bed without my knowledge which the workmen politely didn’t mention. Guess I can always hope they thought it was an unusual pattern in the carpet?! Actually I felt utterly disgusted. How badly had I been living that I could be unaware of a pile of cat sick?! That the damp in the bedroom had taken hold on even the one piece of furniture in that room I wanted to keep?

Clearing through my possessions in the days before the workmen came, as well as the hairball incident, left me with a question. How could I have let my home fill with clutter and hoarding, yet despite this frighteningly surging tide of possessions, I am still without certain much needed items? So many things incomplete? For example, though I’ve been over 2 years in my flat, I have not got the painting done and the walls are still patchy and stained just as they were when I moved in. The same shelves are broken in the cupboards, just as the day I moved in. I still don’t have a table to eat at. Yet I had 14 nail polishes pretty much untouched, baskets of broken jewellery, pieces of ripped paper I might supposedly use in a craft project one day, clothes stuffed tight in cupboards (shamefully hidden and many of them purchased in dissociative or irrational episodes for an identity other than “me”), and cluttering nick nacks covered in a film of dust.

My head was full with disgust at myself, confusion, failure, not knowing who I was. Who, what part of me, unquenchably acquired all these things? I am wholly responsible for it, but frighteningly out of control and unable to connect with who or why.

***

The neighbours must have thought I was moving out with all the bustle.

Despite the exhaustion and disgust I am gradually starting to see that this is a new start. My home is emptier. It is different now. The furniture I have left is not broken. It matches together as much as I can manage. Surfaces are no longer jam-packed. I can see space and calm and bit by bit I am attaining some of the mental quiet I so desperately need and I have been trying to achieve.

This is going to be a home I can make good for my fiancé and I; when we get married please God next autumn our home will be my flat. He has not had a home of his own, at least not one where he feels safe, for a long time. It needs to be different now for both of us. I need to look forward.

Ginny xxx

All in boxes

House clearance day has arrived. I’m waiting for the clearance firm to get here. My anxiety is going through the roof right now (well at least there’ll be more space to get the old sofa out if it does 😜). On the one hand I’m dreading it and very nervous. On the other I’m relieved we are finally doing this and excited that my home will be emptier and calmer.

I’m not sure exactly what it is I’m nervous for, or what I’m dreading. Maybe it’s because I’m coming face to face with how I haven’t coped and the effects of my mental illnesses’ symptoms; coming face to face with the fact I couldn’t do this on my own.

I’m trying to focus on being excited. Recently I saw a documentary about stress which said that a lot of the same chemicals are released in the brain and body when we are excited as when we are nervous. How our brain interprets these biological changes has an impact on whether we feel excited in a positive way, or stressed / nervous. So when we feel nervous about an event, if we tell ourselves we are excited, this may be able to change how we feel to a more positive experience. I’m not sure if this is correct but I’m going to give it a go!

Ginny xxx

Going away for a break

Going away for a break

Wow. This week has been really emotional, with so many really sad tragic things happening – the Grenfell Tower disaster, two terrorist attacks in London, another attempt in Paris, another major attack in Mosul – so much pain. I desperately want to be able to “do something”. Help. Bring some hope. Bring the merciful love of our Heavenly Father into this pain.

My partner and I have taken some action to do this and I’ll post more on that separately.

Meanwhile I’ve been feeling overwhelmed. I’ve had a couple of appointments with the pain clinic which have been very draining and in some ways upsetting. I’m sure I’m going to learn things that really help there and I have to try to keep going, keep trying, keep open to what they’re saying and offering even through the parts of it that hurt.

Today my partner and I are going away for a few days. We are staying in a besutiful hotel. We’re going to meet up with some of his family and my goddaughters’ family too. This is the first time in I don’t know how many years that I’ve been away on holiday. It’s not to a totally unknown area but I’m anxious. It’s a huge thing for me to go away and stay somewhere I don’t know and to stay a few days. I am excited too and know I really need a break. Most importantly I’m looking forward to some time to spend with my partner, talk and pray together, and share home calmly rather than constantly running around at the point of exhaustion and it seeming that time in which we can be there for each other and be thankful for each other sometimes comes last. I’m thankful for these coming days and pray for God’s blessing on our time together.

There’s a pool at the hotel and I have made up my mind that for the first time in about 7 years I’m going to get in the pool. I’m going to try to do some of the exercises my pain physiotherapist gave me and try to swim a little. It should be fun but also a great challenge to overcome as I haven’t been in a pool since I used to swim obsessively to try to lose weight when I was in the grip of bulimia.

So it will be a weekend of firsts and implementing some beautiful changes, please God.

Wishing you all good things this weekend.

Ginny xxx

 

Exhausted unrest

I am very frustrated that basic activities are taking so much of my strength and taking a massive amount of planning.

Just going out is exhausting. I’m desperately needing more time to rest physically. Also, desperately wanting more time to properly order my home and take care of it. I have had a constant stream of appointments and commitments that I’m struggling through, feeling more and more frustrated by exhaustion, mobility problems, pain I can’t cope with, and anger with myself and unrest about my home being disordered and messy.

There are a couple of friends I really want to spend time with or do things for. I’m scared of taking from others and not giving back. Yet meeting someone, or going to their house, or cooking a meal for them, totally wipe me put afterwards for days after. I think that’s through a mixture of my pain and pushing myself too far physically, and my anxiety and the voices and feeling overwhelmed in a sensory way. Talking, others’ emotions, noise, new places, everything happening around me, can be just too much coming in to cope. Sometimes I think I have sensory processing disorder or at least sensory processing difficulties!

All this leads to despair, being cut off, and being unable to give thanks or try to open my heart to learn gratitude. I need to make a change. I don’t know what.

Ginny xxx

They’ve found her

My mother has been found. My abuser has been found.

It has been a little over a year since I first reported to the police the abuse done to me by my mother in my childhood and early adulthood.

Since I made my statement, the police had been searching for my mother to question her. It had come to the point that with her not being found for so long, part of me felt perhaps she never would be. Had she chosen to disappear? She had gone from her last known address, disappeared and ceased contact with the hospital that was treating her, no information about her whereabouts was known by the very few former friends and similar, and none of the few leads I could think of helped (a relative she might have had contact with, a place she worked a very long time ago and so on). Even the police’s searches of records held by places like the DWP or tax office yielded nothing (very strange since she must surely be claiming a Benefit, or a pension, or working). The police had even searched the death and marriages registers and were talking about the possibility she may have passed away. It was in my mind whether the time would come that I might have to accept that, though bizarrely without ever really knowing what happened to her.

Then at the weekend I got the news that the police have found her.

Shock. I was stunned.

So, now I am to meet with the DC who is working on my case, the same person who took my statement. He has spoken to my mother. I don’t know if he has interviewed her. I expect he must have. He has things he needs to tell me but felt we need to meet face to face to talk about it.

I’m in a sort of suspense til our conversation. There are so many questions and uncertainties and fears. Where was she? Probably the DC won’t be allowed to tell me. How did they find her? Perhaps he will be able to tell me how. What state is her health in? She was not in good physical health when I last saw her and her mental health conditions are severe; she never believed she was ill though. Has that changed? I doubt it – but perhaps that’s too much of an assumption. No, actually, it isn’t; given the years and years history anything else would be astonishing. What has happened to her since our contact ceased? She disappeared from contact with the hospital team – not surprising, sadly – so has she had no treatment since? What’s she doing? What danger is she in? And what danger is she to others, that’s in my mind too, because of what she did to me, and because of her violence when she is ill.

For me, what now? If she’s been questionned, what happened? What did she say? What do we do now? I can imagine what she will have said to the police about me. I’m trying not to imagine too much in general about this, as it can lead to no good. There is no point in imagining scenarios until I meet the DC. A big issue will be her mental state now, I think, and whether she has capacity to understand proceedings. I think another big issue will be how will there be any evidence of what I went through? So much happened when I was alone and isolated with her. The lack of evidence gives the voices in my head power and I’m stifled and paralysed quickly with the flashbacks on the one hand, the voices telling me liar, disgusting, your fault, you wanted it….

The last 2 days dissociative episodes have taken hold scarily often. I’m fighting them, sometimes. But often that makes me break too much or I’m too far in.

If I have to make some decisions over what happens next, how can I choose for good?

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).

I don’t remember why – the guilt of my dissociative episodes

It is scary sorting through piles of possessions I do not remember buying.

As part of my recovery work I’m allocating time to take care of my home, household related tasks (bills, organisation, housework etc), in order to take responsibility for living an ordered life, to not get into trouble or overwhelmed with unpaid bills and tasks ignored until they become insurmountable, and to make a safe calm and even beautiful home. I had no home for many years, moving from room to room, moves often prompted by my mounting distress. When I was blessed to find this place, it took a long time to feel at all safe or dare to believe in any stability. Then gradually, it became an escape, flight not by constantly moving around but by means of a protective enclosure. Which is good in some ways and something I still need when things are too much, which is frequent, but now it is time for my home to be more than that; even a place and a life that supports my health.

Part of this is continuing what I’ve been trying to do for some time, which is clearing through accumulated items and clutter and organising the things I decide I do need. I’ve been working on this for some weeks or months on and off, tackling different areas. I’ve acknowledged for several months in therapy and with my support worker how I bought and accumulated items as a desperate attempt at escape, distraction and protection. I acknowledge how out of control my spending used to be and too often still is and how impulsively I buy things when in my dissociative episodes, apparently driven by some desperate need at the time that leaves me sick at myself and painfully empty afterwards when my consciousness returns, a massive blank missing in my memory and emotion, but the fallout of my actions apparent – money spent, arguments had, horrific things said, tablets taken, sometimes alcohol drunk and most of all items bought (usually clothes, makeup, accessories, things I’d never buy for myself “normally” or rationally). I hate myself then, most of all for the money spent on myself and the hurt I’ve caused other people.

I’m coming face to face with all this as I’m clearing through hoarded possessions. Much as I’ve been aware of and fighting these problems for months, it’s still very scary finding things I don’t remember purchasing and don’t know why I have. Perhaps it’s even scarier because I don’t really know why I do this when I’m dissociated. Why? Why do I buy things? Why do I become what the evidence means I am in these times – selfish, irrational, irresponsible, needy, childish, bad? What else am I doing in these times? The violent emotion that takes over and hurts people around me, but still I can’t control it – who am I and where is it leading? Why do I behave in ways I can’t remember, that people close to me say are terrible?

I’m scared. I want to take responsibility. I’m trying to carry on gradually sorting out my home. It occurs to me whether looking at items I bought in these dissociative states where there are huge memory gaps, will help me connect at all with what I was doing and who I was at these times. I don’t know.

Ginny xxx

Talking with medical students (updated)

Particularly relevantly given my previous post, at the end of this week I’m going to be speaking with a group of medical students about stigma in mental health. The local university runs several of these small group sessions through the academic year. Attending one is compulsory for all final year students. The scheme was set up by someone from the Recovery College (which I must write the promised post about!) in conjunction with the university psychiatry department. Each session is led by two people with lived experience of mental health conditions and encountering stigma in healthcare environments. I volunteered to take part through a patient involvement network.

Most of the session will be question and answer and discussion, but first I have to speak for a few minutes about my personal experiences. I can think of many examples both good and bad of care I’ve received, stereotypes that affect me and those that care for me (especially specific to BPD), times my care and relationship with services has suffered because of discriminatory practices and rules, how often I’ve felt rejected and not believed when I’ve most needed help and the long lasting effects of this; also, I want to share times that have been good, such as the empathy I met with when I had my minor op last year which helped me cope with my panic and emotional instability at the time, and the encouragement I’ve found at the Recovery College in being valued for who I am and even for what I’ve been through.

This being my first time, it’s hard to know what the students will be interested in. What will they most want to hear about? What is most important for them to hear? What will they want to ask? I’ve had a little guidance from someone who has spoken at one of these sessions before and any more suggestions would be helpful. If you can think of anything particularly important to discuss, if you have your own lived experience for instance with your own mental health or as a friend, family or carer, or if you have a student or medic’s perspective, I’d be really grateful to hear any thoughts.

Thank you so much.

Ginny xxx

24.o2.2017: By way of update, the meeting with medical students was cancelled as the psychiatrist who was due to facilitate the session was called away unexpectedly. I’m due to  speak at another session in the Spring and afterwards will post about how it went.

Two hospital visits and “The Gas Man Cometh”!

The past week has been a mix of unexpected, scary, painful, exciting, relief and changes.

I had been feeling worse than usual physically but had put it down to all the flu bugs around, cold weather and the fact I had been very stressed in the preceding month. However, it wasn’t flu. Just over a week ago I had some horrible symptoms I won’t detail here. On calling 111 for advice they sent an ambulance straight away. At the hospital I was found to have [ahem alert don’t read whilst eating your dinner!] bowel obstruction. Thankfully they had caught it in time before things became more serious (if left, it can cause a rupture in the intestines). I had IVs and they erm, did what they had to to clear it, X-rays, then I had to have more IVs for fluids. I ended up being readmitted the next day because I was having symptoms again so it was a scary couple of days. They would have kept me in but there was a bed shortage. I’m home now with several medications and guidelines to follow about diet and drinking enough.

I am so thankful this was spotted in time and treated. The doctors, nurses and HCAs were all kind and caring and made some scary, nasty things as okay as possible, and reassured me. They were busy but still took time.

I have some changes to make now. I have had to stop several of my medications because their side effects could now cause problems with my bowels. I need to discuss this with the GP to find alternative medicines and ways to manage because I needed their beneficial effects (eg for pain relief). Fortunately I’m due to see a specialist pain clinic in a month’s time. Also, I’ve been told to cut out wheat from my diet to see if this makes a difference. Even though I don’t have celiacs, some people can have other problems with wheat. Bowel problems do occur as a complication in other conditions I have (fibromyalgia, POTS and hypermobility syndrome) and people can find going wheat free to be helpful. I’ve started this and so far thankfully I am not missing wheat too much at all, though I’m still only able to eat a little so that may be why.

I’m hopeful that with these changes I can keep things better, though we don’t really know exactly why the obstruction happened. In the meantime I’m fighting not to get too down through some of the difficult effects I’m still going through. I am very achy, pain is worse as I’ve had to stop some of the medications, and I’m still stupidly weak physically (the fibromyalgia is badly exacerbated which again is to be expected as after any illness). I have had bladder incontinence for years because of the fibromyalgia and nervous system problems; since the bowel obstruction this is much worse and now distressing bowel urgency and leaking if I can’t go right away, are added to that. I’m praying this is temporary or at least that the GP can refer me back for some help when I see her next wek. I used to be too disgusted and ashamed to admit to that side of things but now after everything that’s happened in the last few years it doesn’t seem such a horrendous thing to admit it, though I still get upset and feel horrible when I have worse incidents.

The other problem that has loomed large is I had no heating or hot water for 23 days! The most incredible saga unfolded between my landlord, the boiler maintenance people and the boiler manufacturer and fault after fault was found with my boiler and the flue.

This song seemed apt!*

Thanks be to God, as of this evening everything is fixed! I had a most enjoyable and appreciated shower. Boiling kettles to wash up, clean and have a wash was not the most fun, though it’s what my grandparents did daily as a matter of course. It has been very cold some of the days I was without heating and a friend very kindly lent me a portable electric radiator. On the plus side, I’m likely to be entitled to compensation for the multiple mistakes made and inconvenience caused. I have to apply for that from my housing association.

In more exciting news, today I attended the first session at the Recovery College, which I’ll post more on shortly. It was an introduction to how one can become involved in mental health research, bringing a service user or “lived experience” perspective. It was more inspiring than I’d expected and left me feeling I have something of value I could bring to shape research materials, methods and how research findings are communicated.

Another brilliant event this week is that my friend who has been homeless for a long time, has at long last got a place in a hostel. It’s a good hostel in a safe area. By no means is this an end to his difficulties but it is a blessed answer to prayers and struggles to navigate the way through the council, the housing list, support agencies, forms, waiting lists, assessments, phonecalls….it goes on. What he’s going through is terrible and scary however I pray this is the beginning of safety and a little stability. Thanks be to God, from the depths of my heart, thanks be to God.

Ginny xxx

*”The Gas Man Cometh” by Flanders & Swann. Thanks to Hawkmoon for the video.