Category: Working and volunteering

Where do the words go?

Where do the words go?

I’ve been trying to catch up on my commitments after a really difficult few weeks of being unstable or cut off and dissociated, following the contact from my abuser and the issues that came up during my meeting with the police.
This catching up has involved writing several emails, and putting together feedback on a document I’ve been asked to help put together. (I’m helping compile some material that may go towards a course supporting others with mental health conditions to manage money and debts.)

I have wanted to do this. I care about these topics and the other people I’m writing for. Yet it is a fight to get myself together to do it. My concentration is terrible. My brain seems to be exhausted quickly. It takes me so long to get down a few sentences that I then get frustrated about that itself, which doesn’t help. Thoughts, connected thoughts, then ever more rapidly spiraling thoughts, whip round my head out of control. But this doesn’t help me write. I can’t translate the thoughts into written or spoken words. I don’t know how that can be, since the thoughts must be in words! Where do the words go? Why does the spiralling take over til suddenly every idea is lost, any communication impossible, and an aching, frozen foggy feeling envelopes me?
The only thing loud and clear then are the voices telling me what a load of rubbish my ideas and words are, how I’ll hurt or be disrespectful to someone (or whatever the specific fear is that day), how nobody would want to read this, how it’s worthless….
An email that I’d think should be simple, which I think other people would expect had taken me a few minutes, can take me a couple of hours, including my obsessive checking once I have managed to get any sentences written down. When I was in office work, I was noticeably slow or would lose track of the passage of time. Sometimes, the same experiences stop me writing here, though they are not usually as bad. I’m inefficient and left exhausted. I turn to comfort behavior lile uncontrollable constantly eating sweet “bad” foods because of an unsettling aching hunger that probably isn’t really for food but I can’t satisfy otherwise.

***
I wrote the above a couple of weeks ago but ironically, didn’t finish the post. Today I have an article to write for an online mental health magazine. I’m writing about my experiences of debt and difficulties controlling my spending with BPD. I’m struggling. I wonder if I’ll find this a bit easier than the feedback I was trying to write, as I might not be so anxious about reflecting on what someone else has written, about what they might feel, about what we’ve discussed and whether I’ve paid attention and remembered correctly.

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

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.

Tinsel, trees and memories

[Written on Tuesday 20th December]

Thanks be to God I made it in to the day centre yesterday, despite having been ill and “out of it” over the weekend. It was a ridiculous struggle to go, on the way I thought I was going to faint as I was so dizzy and all the way I was praying and fighting what the voices were telling me (and my body aching to stay in bed!). I feel so sick with myself that I was reluctant in doing a simple thing, just keeping my commitment to the day centre for half a day. Then again I did want to do it, really, in my heart. It’s the voices and pain, mental pain having more hold than the physical, that stop me. I pray my resulting weakened and ungenerous desire will be forgiven and eventually transformed if I do all I can to keep on the path and make my actions loving, whatever is going on in my head.

The Lord heard my prayers and guided me. Doesn’t He tell us He keeps us beneath the shelter of His Spirit’s wings! When I felt I could do nothing He gave me the peace I needed and carried me to the right place. It turned into a beautiful morning.

I had been a bit worried because the activities leader was on holiday, so we were to be short staffed and about 15 elderly people come to the centre on a Monday. When I arrived, I found out a new volunteer had started the week before and of course this was a huge help. I was facilitating a craft activity session. Four ladies joined me and we started making mini Christmas trees from empty plastic bottles, tinsel, felt and card. Whilst it was a difficult start, the idea of having an ornament to take home seemed to appeal, as did the brightly coloured tinsel. I was amazed how everyone got right into it and quickly adapted their designs so each little tree was unique. One lady in particular seemed very discouraged and for several minutes kept telling me how rubbish she was at anything like this and that she should throw her tree away. She has a disability affecting use of one of her hands and I think this makes her feel very sad and frustrated. However, during the activity somehow, she grew a little happier and interested in choosing the colours of felt and glitter for a star to top her tree. By the time she finished, she was talking about taking her tree home and she started everyone talking about where they would display their trees. “I’m going to put mine in the front window so all the children can see it when they go past,” one lady said. I was overjoyed that together we’d created some happiness and a sense of achievement.

The other activity I had planned was making a paper star / snowflake. This didn’t go down quite as well on a practical level, partly as we were a bit short of time. It also seemed to be more confusing and less enjoyable than I’d anticipated. This is a valuable experience for me to learn what’s enjoyable and what’s not. I thought the snowflake would be easier than the trees but that was not so. Possibly it was harder to see what we were working towards and for people with some dementia maybe following a set sequence of steps which had to be done in a specific way, was more frustrating than an activity like the trees which didn’t have such a right or wrong. However, though we didn’t make snowflakes, the topic of paper decorations brought back memories for the ladies of Christmases in wartime or when their children were young, when making ornaments from newspaper and scrap paper was popular because there weren’t the materials or money to purchase decorations.

My soul is emptied of a little of the chaos in times like these mornings at the day centre, as I’m focused as completely as I can on creativity and trying to bring encouragement to another person, love them and show them care.

Ginny xxx

Getting ready for the day centre – trying to keep reaching out

I’ve had a really bad dissociative episode this weekend. After therapy group on Friday my mind just shut down and didn’t even seem to slide into my safe escape world. I was frozen and gone and my body wasn’t working either. I think I slept quite a lot and several times was locked into hallucinations, conscious but unable to move. This afternoon I started to be “here” again though I’m longing to escape into sleep. Every movement hurts so much. Returning from these episodes is scary. I’m fighting through fog to speak to anyone and I’ve lost so much time. Where have the last 2 days gone?

I forced myself to go out this afternoon and bought supplies I need for volunteering at the day centre tomorrow (I go every other week to do craft activities with a small group of elderly people). As I was leaving, I bumped into a neighbour who wasn’t well so I picked up a couple of things she needed too. This evening I’ve been preparing for tomorrow. I am dreading it and don’t know how I’ll be able to leave the house, I feel so bad. I feel guilty for dreading it because they need me at the centre and all the elderly people there are struggling with far worse than I am. By God’s grace the harder I have to force myself to go, the more love I will put into it, and in my weakness He is strong and He will lead me.

Tomorrow at the day centre we are going to make mini Christmas trees from empty squash bottles, tinsel and decorated card, and make stars for the top from felt and pretty buttons. If there’s time we’ll make paper stars (or snowflakes). Here’s one I practiced making with scrap paper just now. They’ll look much prettier tomorrow made from glittery paper.

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I thought it would be nice for people to have ornaments to take home. I particularly like the star because you can start with scraps and still make something pretty. It’s a bit like what I’m trusting in God to do with my life – bring something beautiful from the mess of my heart.

Ginny xxx

Constant anticipation of the next error – and consequential disaster: Part #1

I try hard to look for good things to appreciate. I’m trying to counteract my anxiety and overwhelming emotions by looking for the positive, hopeful things that can come from a situation. (It’s something of a DBT technique which I’ll elaborate on in another post.) I’m told I’m not yet very good at finding positive things about myself. I think gradually I’m getting better at seeing positive things in the outside world.

However in some areas it’s hard not to not only feel overwhelmed by both emotions and external negative events and also to expect them.

Benefits is a case in point right now and it has been for years, every single time I’ve needed to claim a Benefit when I haven’t been able to work / haven’t been able to work full time, because of my health.

Today, I received a letter from the Tax Credit Office about an error made in my tax credits earlier this year, when I was working at the department store. I was aware of that mistake. They had incorrectly recorded the income figures I had given them and given me only partial information about eligibility. Consequently they paid me tax credits I wasn’t entitled to. The letter I received today was rather confusing but essentially confirmed that. So far, that wasn’t too bad – I will have to pay back the overpaid money when they ask for it but I already knew that.

Next, I opened two letters from the Housing Benefit Department. The first contained two award notices both almost the same but with completely confusing dates, entitlement and income figures. What’s that about, I wondered. One of them was marked “change in personal circumstances”. What change in circumstances? I haven’t had a change recently. I opened the second letter from Housing Benefits, with a certain sense of foreboding!

Yup, disaster again. The letter told me that the Housing Benefit Department had been informed by the tax office that I am in receipt of working tax credit, therefore I am working and my housing benefit has been suspended until I give them details of my new job and current income.

Oh my days. I assume they have received a copy of the letter I got from Tax Credits. If they took time to actually read the letter, they would have seen it was saying that I am not entitled to tax credits. If they had looked at the dates in the letter (not to mention previous documentation I’ve supplied them and previous discussions I’ve had with them about my receipt of tax credits) they would have seen that it referred to a period earlier this year, not to now. They also know that I am not working – I have given them proof that I am currently in receipt of Employment Support Allowance because I am not working because of my health.

So, my housing benefit has been stopped. I will have to contact my landlord on Monday to explain why the benefits payments have stopped. I will have to contact Housing Benefits and try to prove to them that I am not working. This will probably involve chasing around the tax office and the other oxus involved in my employment support allowance. I have to make a written statement and gather together copy documents from my employment support allowance claim and tax credits. Quite probably I will have to take this in to the housing office, queue for a long time to see someone, which physically I cannot cope with at the moment as I can walk so little. My anxiety has skyrocketed because of the financial problems this suspension in my housing benefit will cause. Worse, from my past experience, once one benefit gets stopped, all the other benefits get stopped too. I am anticipating that I’ll be contacted by the employment support allowance office next week saying they’ve received information I’m working so my benefit has been stopped. Then I’ll have nothing coming in.

This may sound like an exaggeration but it has happened to me and to friends of mine before. And it could all so, so easily have been avoided. How easily the housing benefit office could have seen that the correspondence referred to months ago. How easily they could have checked with the tax office to see if I was working. How easily they could have made a quick phonecall to me or my support worker, if something wasn’t clear or they needed a particular piece of evidence. Wouldn’t this have cost them less, as well as me? The situation would have been resolved in minutes. Instead they have sent out a letter, required a statement, someone has to take copies of this, take copies of documentation, probably see me for an appointment, restart everything, set up payments to my landlord again (God willing!). Even without counting the cost and distress and anxiety caused to me, it is a hive waste of resources and confusion for nothing.

Since I first had to claim Benefits in something like January 2015, I reckon I have been paid the correct amount I was entitled to for a maximum of one month at a time, before the next error or mess-up has occurred and at least one of my Benefits has been cut, stopped or refused incorrectly – and completely avoidably. Last year when I rented as a lodger in a private landlord’s family home, this array of errors left me so very close to being on the street; if it were not for an extremely generous friend who paid my rent one month, I would have been out with nowhere to go. It is hugely fortunate that I now live in a housing association flat where I will not be thrown out immediately if there is a problem with my housing benefit. It is hugely fortunate I have the expertise of my support worker who will help me get this resolved as fast as possible and stop me going to pieces in the meantime. Most people don’t have those two blessings.

I don’t want to complain and whinge and expect money for nothing. I don’t think I deserve other people’s constant support. I could very well have nothing. I need to try to become independent and able to support myself. Support doesn’t come for nothing and I should expect to take responsibility, not have everything handed to me.

I think one thing that makes it so hard is when you have been through every process as well as you can, given all the information asked of you, taken all the steps you can, and despite this everything still crumbles. My experiences over the years tell me as soon as there’s any stability, it gets taken away again through error or miscommunication, despite all your best efforts. And the error seems to have an effect like tumbling dominoes on all the other areas of your life there is any stability. Losing stability has immediate big consequences when you have very little to live on. It also drains all your energy, time and emotional resources, which go into trying to correct the error before disaster point (losing your home, no money for food, etc) rather than leaving you any strength to recover, contribute something to your community in your day to day life, benefit from opportunities that might make your situation better (and even maybe less dependent on social and state support, not that needing it is a bad thing). When you are constantly using all your resources fighting the next mistake and next disaster, trying to ensure that you have the basics you need to get by, in a state of anticipation of the next disaster so you can try to minimise or allow for its impact; when you feel as if you’re being knocked back, kept vulnerable, denied any security, despite your hardest work to set things right; then there is no way you can do more than just get by, in a constant state of strain.

So, I’m wondering what I can change. It seems I cannot change the fact that mistakes constantly occur, despite me trying my hardest to do the best I can for my part and to take steps to pre-empt the problems. I don’t want to feel so spent, trapped, angry, vulnerable and at risk as I do at the moment as a result of the repeated cycle of mistakes.

So, what can I change?

[Part 2 to follow, not that I have any answers yet! Thoughts are most greatly welcome, as ever.]

Ginny xxx

 

All change…

Officially, my last day of work at the department store was yesterday, although as I am currently signed off sick, I was not actually in work. Last week I had my exit meeting with my manager (handing back my ID and keys etc) and said goodbye to my closest colleagues. I’ll be popping in again this week to say bye in person to a few people I was not able to see, and deliver some notes of thanks. They gave me a reed diffuser in a summery freesia scent, which is already providing a perfect calming aroma in my lounge, as well as a card wishing me well. I hope that I keep in touch, in particular with a few people from the department where I worked. We found a lot in common in the months I was there.

So it’s all change again now. I’m sad to leave. I’ll miss people – colleagues and some customers. I’ll miss the creativity. I’ll miss some aspects of the routine and order. I feel bad for having to go after I’d got to grips with things, received training and my colleagues and manager had put time in to show me what to do and support me into my role. They are all incredibly understanding and caring over my situation that has led me to need to leave and that helped me a lot; I still feel bad for leaving the team and leaving more work back on other people. I guess the good side of that is I must have had some confidence, in the end, that whilst I was there I did manage to do some good. Before I started this job I felt utterly useless, unable to trust that I could do any good because my previous employer seemed to find me so deficient. I see now that at the store I gained a tiny bit of confidence, as well as knowledge.

I’m amazingly anxious and I’m not quite sure why. I’m feeling it physically and feeling shaken and near crumbling and crying and really wishing someone could hold me and tell me it would be alright. I don’t know exactly what is causing this. I’m teetering on the edge of dissociating but I’m staying on this fragile edge instead of slipping over. On the edge are raw and exhausting emotions and I’m spinning and spiralling rather than falling into the safety in the hidden mist of dissociating. It’s painful. I’m trying to use my grounding techniques and self soothing and trying, if only in tiny moments, to avoid falling over that edge. Dissociating may be a relief but the pain it causes me afterwards, and others during, is even worse.

I’m trying to find the way through the next steps now that I will not be working for a while (on my GP’ s and support worker’s and others’ advice). I’m confused about all the forms I have to complete and assessments I have to go through. I’m scared of how they’ll judge me. Scared of whether I’ll manage financially. Scared of so many things that are making me feel trapped, not believed, going into the unknown…. I’m so thankful I have my support worker guiding me through, otherwise I’d implode and go back to shutting down and hurting myself out of fear and pain and flashbacks. I’m so thankful I’m not alone. I’m trying to find ways that this instance of having to leave work – because I’ve lost or head to leave more jobs than I can cope with counting, for the same reasons every time – is not yet another repeat of this cycle and is not only another failure, loss, or let down to those who have tried to help me. I’m trying to find ways I can make this different. I have therapy now. I have my doctors and support worker. I have a home. God willing I am soon going to have some more social interaction and a place to contribute something, in a mental health charity I’ve been referred to. These all count for a lot in stopping me going so deep over the edge and now I pray I can build something good from this place.

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

Crashing

This is a hard post to write.

I have not been coping physically with my job for a long time. I have really tried to ignore this. Since I started it made my pain levels worse and ever since they have kept increasing. I kept hoping it would at least stop getting worse and maybe that I’d get better at coping with it. I wanted to be able to do it. Be some kind of normal. My job sometimes helps me mentally, engaging in something creative and focusing on helping customers and giving the best service I can. It takes my focus outward which I’ve long believed is really important in staying well. The tactile aspects of my work, handling the different fabrics and trying to create attractive displays, can in themselves be grounding and soothing. Additionally, it’s an area where I can try`to do some good and not feel useless. (I know that’s something I need to work on, how connected my sense of worth is with others’ outward perception of me, but I can’t deny it helps for the time being.)

Now I’ve come to the point of crashing completely. In the last 3 months in particular my pain and physical weakness has increased faster. Since around the time of my operation I guess marked a real down-turn physically and it was to be expected really that  my fibromyalgia symptoms will be worse for a while afterwards. Everything is worse really, my back problems (I had a slipped disc years ago), arthritis…

I know I haven’t really talked about it so maybe this sounds weird. Whenever I talk about my physical health I worry it all sounds stupid, nobody would believe me, I’m a fake and I should just get on with it and everything’s my fault. (There’s a lot I have to work on there too, I know.)

I feel like I’ve crashed suddenly. Gradually it has got harder and harder to – move, to put it bluntly…  Getting harder to get through the day….harder to be able to get home, having to sit and rest, and crumpling as soon as I get in, lying down most of the evening… Today I have had to spend most of the day lying down. Pain and shakiness in my legs makes any standing and walking really hard. My legs are cramping and jerking out of the blue. I can’t feel in my right foot normally and at the same time the pain is really bad through my lower back and hips, worst on the right… I’ve had all this before although not as bad, but I am very scared right now. I feel scared and shaky and lost and so tired. I slept a lot today too. My support worker came this morning and I was so tired I was struggling to literally get words out.

So I find myself admitting again that I am probably going to have to leave this job. The physical deterioration from trying to meet its demands is too much. I have tried to look into reducing my hours but it does not look as though this will be possible. I;d have to massively reduce them in any case. My manager has been kind and understanding in her approach but has to follow the sickness absence procedures set down by the company. Since I have been off sick 4 times within a 6 month period, this is flagged as a problem. I can well understand that it is not fair to colleagues to be off too frequently and I know myself that I am struggling more and more with daily tasks, which is increasing my anxiety and in turn my psychotic thoughts and my fears about what colleagues are saying and thinking about me and making it harder to cope with the hallucinations and all the mental struggles of every day.

Outside of work the effect is great too. Not only are the pain and mobility problems an issue, but I have no energy or coping resources left to manage day to day tasks like keeping my house clean, keeping in touch with people, doing positive things to bring a balance to life outside work, or perhaps most importantly right now, giving the energy to therapy and recovery that I need to. The months I have left with the PD service are precious and working on making use of my individual and group sessions is demanding. I want to be mentally “present” for it, not shut off protecting myself because I’m desperately trying to cope with pain and utter exhaustion.

I’m going to be referred to Occupational Health so I await to see what they will suggest.

ergonomic occ health

I also have to follow my doctors’ and my support worker’s advice. I believe they would all prefer me to reduce my hours. My support worker definitely thinks so.

The one thing that ironically, in a twisted way makes this situation possibly not quite so bad, is that I may actually not be worse off financially working fewer hours or not working at all. I want to talk about this more in a separate post shortly. It’s a bizarre situation that doesn’t sit well with me. At the moment I am struggling in pain and making myself physically worse every day, working part-time, earning just above the minimum hourly wage.  I receive less than £10 per week help towards my rent, I am not entitled to any help at all with things like council tax*, and although I was initially assessed as eligible for a small amount of tax credits, this decision has now been changed and I have been told that I am not entitled to any.  Now, I strongly believe that it is morally right to work as much as I can and not to expect to receive handouts when I could be earning myself. However, what I cannot get away from is that on my current earnings whilst I am working as many hours as I can (well, I have to admit now, more than I can) I cannot live. I do not have enough to cover basic bills and simple living costs and I would not be getting by if it were not for regular help from my family and even occasionally my very good friend who has lent me money for grocery shopping when money has been tightest.

Not only can this situation not go on – I am over 30 now and I simply cannot go on needing financial help from my dad; I have to support myself – but the cost of this job physically is just too much to go through to still not be able to live. It is painfully ironic that because if I were not working or were working fewer hours, for example for a few months or so whilst I complete my therapy, my financial situation would actually be more stable because of the greater help I would get towards rent and living costs. That makes me really really uncomfortable and it isn’t right. Yet I have to be able to live.

It isn’t the main factor that has led me to this point. If I were coping physically I would keep going and if I could I would see if I can increase my hours. But I’m forced to accept that just isn’t so and physically things are not good right now.

I feel really worn out and vulnerable right now. The last time I was so low physically, about 7 years ago, I didn’t feel so afraid or sad. I wonder why that change has come. Perhaps I feel more responsible now. Perhaps I am sadder about potentially leaving my job because there are aspects of it that I genuinely like this time. Perhaps I feel more of a failure that this has happened again.

I need to focus on the good things that could come out of it if I do have to leave. My health problems are not life threatening or anything that serious and so many people are going through much worse, much more medically severe, perhaps without friends to help them and understanding doctors. In moments I can see that there can be ways that in the next few months I can try to turn things around.

I don’t want anyone to feel bad for me. Tonight I just needed to get all this out and admit that I’m scared.

Thank you for listening. I can’t imagine where I would be right now without this blog and the support of you lovely people who read and care and comment. There’s so much more I should say on that. I hope you know how much you mean to me. Hugs xxx

Ginny xxx

(*apart from the 25% single person occupancy discount. For non-UK readers, council tax is a roughly monthly fee payable towards local government spending like policing and other emergency services, refuse collection, some elements of care for vulnerable people, etc. Most working adults pay council tax. The amount payable depends on the value of the property you live in.)

Image not mine, sourced on the ever useful Google – I am afraid I do not know the artist (it says in the top left I believe but I was not able to expand it to read it.