Tag: work

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

 

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Only sometimes – on uncertainty and friendships

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

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

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

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

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

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

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

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

Ginny xxx

 

 

A much bigger loss than they realise

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ginny xxx

Why did the goose cross the road, and other stories

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

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

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

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

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

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

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

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

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

Ginny xxx

 

 

 

It just doesn’t stretch, whatever I do

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ginny xxx

My first week – 3 days in

(Please see footnote)

I don’t think I’ve ever had as much online training as I have in the past 3 days. Plus one 2 1/2 hour Powerpoint presentation – I can only imagine how tiring that was for the trainer as well as us! I find it much harder to take information from a computer screen than if I have it in hard copy – does anyone else find that?

Fortunately the training was rather more appropriately tailored to the specific needs of the department than the above (Just for any other NCIS fans out there – if you have never watched NCIS you will now think I’m even weirder than you probably already think I am 😉 Which would probably be about accurate anyway. Please see disclaimer below).

There is certainly a lot for me to learn in my job and I feel very useless right now. I can’t answer customers’ questions properly as my department requires specialist knowledge. It is a blessing that most people have been patient so far. It is also a very different team to work in from those I am used to. There seems to be genuinely understanding and support and a willingness to welcome new staff members, answer questions, explain and value everyone from the start. That is just so far from what I usually encounter at work and that is a great gift. It will make a massive difference to me being able to cope in this workplace.

Ginny xx

Please note: with thanks to Kksuig for the clip from NCIS season 4 episode 11 “Driven”. NCIS created by Donald Bellisario and Don McGill; all rights belong to CBS Studios International / Channel 5 and the relevant artists. 

I do not intend to cause any offence by insertion of this clip. Sexual harrassment or any other form of harrassment in the workplace or elsewhere is a serious and damaging act and in no way do I wish to belittle the harm and suffering it causes.

Eeek :( – shortest post ever?!

I feel wound up like a spring about to explode, really really anxious and really angry with myself.

I start my new job tomorrow. I’m so scared. I have no confidence. I feel like rubbish. I know it could be good. I’m thankful for it and for having something to go to that will fill the day, be constructive, ease financial problems, let me try to contribute something. But I have no confidence at all that I can do it, after everything that went wrong.

I’ve just had no end of technical problems too with the internal website and had to phone up for tech support, who were very unhelpful, and after I had insisted for about 40 minutes that I needed assistance as I could not do essential things I needed to before starting work tomorrow, was basically told by a tech manager that I am rubbish and will not be a good employee and do not fit in with the firm’s ethos!! It was a completely bizarre conversation and a horrible start. Now I’m even more terrified and sure they hate me before I’ve even started. And still haven’t been able to get onto the website to do what I needed to before starting, so it feels like a mess.

Eeeeek….. Dear Lord, help me please….

The only good thing is that I will be seeing a very good friend later this afternoon and I will be very thankful to share in her company.

Ginny xx

Deeper Still

I feel so tired and cold inside today. Last night and this morning my emotions were rocking between extremes of sadness and anxiety and hurt and I cannot justify any of it. Now, even though I have done some nice things today and received some very good news, which really is a gift – I went to coffee group this morning so I was not on my own, and my offer of work was finalised which means I will have some form of financial security – despite all these things, instead of feeling thankful, I’m feeling scared, empty, useless, lost and numb. I’ve slipped into that cold state of feeling that I am only watching and desperately wishing I were not alone, sad but angry with myself at the same time.

These times make me doubt even more what’s really in my heart.

I’ve been listening to this prayer song :-

Deeper Still by Bebo Norman

She turned her head as if to hide, there was just nowhere to go. ‘Cause standing tall on every side, the mighty fear of letting go. She said, my God I’m so ashamed, thirty years a tragedy. I still believed that he could change, but he pulled me down like gravity.
He broke my will, but it’s deeper still, deeper still .

She told me morning was the time, when the sun burned bright and clean, and love grew fragile on the vine, all wrapped up in gold and green. ‘Cause after all we know we all are after all the same things – but for the sun no rain would fall, and it burned him up and turned him mean.
This fire that kills me, it’s deeper still, deeper still.
Tonight I rose up with the moon, and looking down from high above, I saw a world carved and confused into valleys deep in need of love, and falling down all thick with grace, Heaven’s cloud of mystery was filling every empty space, down to the depth of human need.
This love that heals, it’s deeper still.

Love that heals me, love that heals me, love that’s deeper still.

This love that heals me, it’s deeper still, it’s deeper still.

“Broke my will, but it’s deeper still; this fire that kills me is deeper still; and filling every empty space, Heaven’s cloud of mystery – this love that heals is deeper still.” This is the only thing that lets me carry on in these times. Without it I am nothing. The promise that no matter how black and cold it is in our reality of this moment, how matter how much we are hurting, no matter how much we fear what is within us, what is always deeper still is God’s love for us that created us to do good, God’s love that longs to fill us in every empty depth of our hearts.

I hate what I see that I am and the fight that goes on in my head and the frozen darkness that stops me seeing anything good. But this does not change the truth that God is love, God is beside us on this road, and the greater my emptiness and my need, all I have to do is cry out to Him, plainly admitting how things are and everything I cannot change. Then, deeper still, deeper still, will He come into my need and sustain me.

https://www.youtube.com/watch?v=xJ7g9Gf64ns – not my video. With grateful thanks to Marco Bonaccorso. From Bebo Norman’s album “Ten Thousand Days”.

Ginny xx

“What did we do in the War?” (and other unexpected questions…)

“What did we do in the War?” (and other unexpected questions…)

Just a little lighter-hearted anecdote…

If you’ve read “Not working out” you’ll know that I’m looking for a new job at the moment; something that I can do part time and that I might find less mentally stressful and less triggering to my obsessional thoughts and voices.

I’ve applied in several stores and I went to an interview today for a sales assistant position in a family / fashion high street shoe store. I always try to do some preparation before an interview to find out about the business but I have to say that in this case I was totally unprepared for this question out of the blue, “So, what did we do in the War?” ! Not your typical interview question when applying to work in a shop?!

Just wondering if any of you have any funny / puzzling interview stories? I enjoy these unexpected and funny sides of every day life no matter how small. They give a bit of lighter-heartedness and make us laugh even when things are rough. Which is important to hold on to.

A psychiatrist once told me that when we struggle with anxiety, it is like a bucket filling up faster and faster with water inside us and weighing us down or we feel we are drowning under it. We can’t tip the bucket over and we can’t stop the flow of water when we’re struggling with anxiety and depression and fear but we can do little things to punch holes in the bucket and let some of the water drain out so that we can live a little bit more easily. Humour is one of the things that’s good at punching holes in the bucket.

(And in case you were wondering, the answer to today’s question was that they made Army boots. Didn’t get that one right but some of the rest of the interview went okay and even felt like a good conversation in places, dare I say it, so perhaps I can hold out some hope. I’ll find out next week.)

Wishing you as good a day as possible. (Perhaps I’m practising for my store job. “Have a nice day now…” ;-)….)

Ginny xx

 

 

Not working out….

“I shudder to think what the state of my in-tray would be if I was away from work for five days!”

“Yes, someone might slip dragon dung in it again, eh?” said Fred.

“That was a sample of fertilizer from Norway!” said Percy. “It was nothing personal!”

(JK Rowling, “Harry Potter and the Goblet of Fire”)

 

Well, I haven’t found any dragon dung yet, but I certainly have been having problems with my in-tray.  It has really not been a good few months at work and now everything has finally come crashing down.

All my life I’ve found a kind of escape in work.  As a primary school age child, I was taught at home by my mother who suffered severe mental illness.  Achievement, excelling and perfection was of such importance to her and the only way to avoid her accusations, threats, shouting, violent distress, which would erupt when I could not do something or did not do as she wanted. It was the only way to be safe by avoiding this explosion and avoiding the harm I appeared to cause, escaping the danger and catastrophes I believed would ensue or did ensue. (This probably warrants another post at some point.)

When I went to secondary school, I physically escaped her illness for a portion of the day. Soon I worked out that if I stayed at school as long as possible (extra clubs, volunteering, staying on to do some of my homework at school rather than going straight home at the end of the day of classes) I could escape for longer. Working in my bedroom in the evenings was preferable to staying under her intense gaze, or risking conflict if I was around her. Being used to the need for excellence, I worked as hard as I could, so though I was nothing particularly special or noteworthy I got good marks by virtue of the time I put in, and this too was “safe”. It secured her approval too sometimes.

I continued to work as hard as I could and give my all in every job I’ve had.  Perhaps it’s something that comes fairly naturally to me in my character.  If so it’s a gift I am thankful for.  It is very important to me to do a good job, give my best, serve the people I am working for properly, offer my work in prayer and dedication.

It has been a way to escape from the noise in my head, the hollow emptiness and uncertainty, flashbacks and panic attacks. Focussing on work takes me away from myself, to look outside and to others, to keep my concentration on the task in hand. Although I have never had much self-confidence, I have gradually learnt there are some areas I have some strengths and where, even if I may never be satisfied, my managers at times do seem to be. So whereas pervading most areas of my life I have suffocating fears that I am going to hurt someone, that I’m bad inside really, at work at least I can hope objectively to do some good, give a good service, help someone.

All that has come crashing down in the last few weeks. I’ve been on a phased return to work since I was last off sick after being in hospital.  I’d got up to about 4 days, to accommodate therapy appointments at hospital.  For several months the pressure of the workload seemed to be increasing.  I was getting more and more stressed and though it was agreed in principle for me to go to my appointments, there was not any support in terms of managing the workload or anyone covering during my absence, so work built up, causing more stress for me and more anger from my managers.  I tried to address this, together with the general atmosphere, which was becoming more and more uncomfortable and hostile.  I did manage to have a few brief discussions with managers and was never told that there was a problem with my work and my appraisal earlier in the year was, to my surprise, good as well.

A month or so ago the pressure built up to a point I could not cope with and I insisted that something needed to change.  At this point, I was told that there is not much on, it is not busy, nothing much is expected of me, everyone knows I cannot cope with the work, and people hold back giving me work because they know I can’t cope with it. The fact I do extra hours was used as a fact to support the idea I cannot cope with the work because it shows I can’t get the work done in the standard working hours (whilst I would say there was simply too much work to get through).

There were many other things said that were very upsetting which I won’t go in to here, partly because I don’t want to say anything directly identifiable to my employer.

But basically, I was told that I’m rubbish and I cannot cope with the job an don’t get through the work, and that I am not providing the kind of service that I am supposed to because people know I won’t be able to cope with it.

So many feelings went and are still going through my head over this.  Partly anger and shock, because I had found that it was busy and was giving everything I good even to the detriment of my health.  This was so contradictory to all the feedback I’d had before – why? Then fear and anxiety. I didn’t even know I was doing so badly or that people were so unhappy with me.  I mean, I knew they were unhappy with me, and thought they think I’m stupid and don’t do what they want quickly enough, but I hadn’t realised how incompetent I actually was.  It’s even worse that I did not realise how bad I was, because I fear so much in my life that there is something horrible and bad in me which I’m not aware of and can’t control, which hurts people and I don’t even realise it, means that my family even can’t stand to be around me.

I had hoped work was one area in which I could do some good but now this is gone too.  It was what I was clinging on to and trying to keep going.  Even though I could see in a way it was doing no good to me because I was so stressed and couldn’t cope with other areas of my life at the same time (not looking after my flat, not cooking, getting mixed up over bills, so drained I did not socialise with anyone outside of work).

I know that my concentration is not good, that I dissociate for periods of time and lose track of time when I am stressed and very upset.  I know I do not work as quickly as I used to.  I didn’t realise the extent of the effect it was having.  That I can’t do my job.  That my perception of the situation should be so different from other people’s – I thought I was giving everything, I thought there was pressure, when other people are saying there is no pressure, it isn’t busy, and I can’t do it. That is frightening to me.  According to my therapist, a disconnect between one’s own experiences and other people’s, and a difficulty dealing with this, or dealing with situations in which our emotions and feelings are different from others’, is common in personality disorders.

I don’t know where I go from here.  I called a couple of advice lines and they told me that possibly I have some case to say that more could have been done to support me, with more “reasonable adjustments” at work.  I looked into this and wrote down a case around this but I couldn’t go forward with it in the end.  I doubt my own perceptions and feelings too much and even writing it for myself, I felt like a complete fraud, that I’ve invented everything and the problems lie all with me not my employer.  The voices in my head are telling me I’m nasty, disgusting, invented it, liar, fake, you’ve invented a story to accuse people of things… I just cannot cope with that and know how much more intense it would be if I actually tried to put anything in. Crazy, I know, but that’s what goes on in my head.  I’m scared in the end that I’m just bad and evil and greedy inside.

In the end, my employer has told me I’m not coping with the job and not competent and I think I’ll probably be dismissed.  Even if not my GP and specialist have told me it’s too stressful an environment.  I need to get out of this role and do something less pressured and stressful and where I can engage in the therapy I’m doing at the minute, get to appointments and get support. I agree with them.  Even if I am dismissed or do have to take the decision to leave, the one good thing I can see is that at least I am choosing to try to do something to put my health first, for the first time. Not admitting what I need to do in the past has just led to things getting worse and worse.

But it’s scary right now. I’m signed off sick at the moment. I feel empty and frightened and anxious all at once and there’s too much space for the spiralling thoughts and fears in my head.  I’m trying to focus on positive and creative things. I don’t know how to trust myself at all because even in the last things that I trusted I could do properly, it seems actually I wasn’t doing a good job at all, and everyone except me knew it. So many jobs have ended in the past  and I so want to find something that is sustainable but where I can engage with my therapy as well.

I’d love to hear your thoughts on work if you’d like to share them. Is work a good experience or a bad one for you? What kind of work you find is good for you and something where you can give your skills and abilities? If you find part time work is helpful and how much flexibility you find employers can give to be able to go to therapy appointments as well as working?

It seems like a very anxious and uncertain path at the moment.

Ginny xx