Category: Benefits / Social Security / Social Services

Two hospital visits and “The Gas Man Cometh”!

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

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

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

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

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

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

This song seemed apt!*

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

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

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

Ginny xxx

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

Update long overdue!

It is a really hectic, up and down time at the moment and I’m much overdue posting. It has been hard to gather my words. I don’t make a habit of 2am posts – certainly not the best time of day for coherent writing – but I did not get to finish this earlier and it felt important to write before a big change coming up for me in the morning.

Belatedly, wishing you good things this New Year. I think I can just about say this since it’s still January! I’m praying that positive times and opportunities come for you and God’s blessings are shown to you to encourage you each day.

January is always a strange time, cold and empty in a way, after Christmas. Right now, so much seems unsettled, in the world, for my loved ones and in my personal life. I’ve written that before not long ago and of course it has not magically changed with the new year; if anything it seems all the more apparent. I’m trying to give generously of time and resources and friendship, for example to friends in need, and that’s how we encounter Christ in every day. But I’m feeling twisted apart inside because I come up against my limitations, what I cannot give and cannot resolve.  The family in my block, both of the partners seriously ill, whose Benefits have been suspended unresolved for weeks so they have no food, heating or electricity. My friend who has already suffered terribly and now faces more surgical procedures, my friend who has been homeless for almost a year and whose life may be in danger… to the thousands on thousands of people seeking asylum, the fear taking hold giving weight to insular policies that seem to offer protection but perhaps already spiral out of control. (The Mexico border “wall” seems to me to teetering somewhere between bizarre Divergent- trilogy-esque images and more than echoes of the Cold War era eastern block policies.)

I steer away from political issues in this blog but I think this turmoil hits ever closer to home. We hope that in times of hardship we come together and hold onto what matters most but I’m starting to think a certain level of hardship and fear brings only divisions. Then again, in my faith I believe somehow this must not be true because Jesus became Man to suffer and experience everything we suffer and go through. And He is all Love. Love came here, into the darkness and despair. Nothing changes Jesus. The despair and dark and hurt didn’t change Him, didn’t change love. So Love is here, Love suffers and struggles, but isn’t extinguished, so even in the hardest times, it’s love that remains – not division and conflict . I mustn’t lose sight of that.

This post has diverged somewhat from the update I originally planned. Probably to do with the fact that it’s 2am. I’m going to try to get back on track.

Since Christmas, I feel I have not been able to catch up at all. Usually, I have a big clear out, going through cupboards and drawers and so on and decluttering. I haven’t managed this at all. I’m frustrated with myself that I can’t keep on top of the housework at all. My emotions are bubbling over and have been for some time and I feel I have no resilience to cope with straightforward things. Saying that, maybe a lot is happening at the moment. I’m about to be discharged from the personality disorders community service I’ve had therapy in for the past 2 years. I’ve been trying to find support and things I can get in place for after my discharge. This has not been easy and actually it has been quite distressing because I have been promised a lot of treatment I haven’t had and I’m left with major mental health issues unadressed. On the positive side, I have made contact with a peer support worker and Recovery Coach who are going to help me short term and I think this will be really valuable. I have also signed up for some courses at a Recovery College, which I’ll post about (and explain) next week.

My physical health is not going through a great patch just now. The cold always makes the pain worse so that’s part of the reason. I have had to give in to the fact I need a wheelchair sometimes now and I’m looking at getting a mobility scooter. At least this will help me be less isolated and take a little stress away perhaps, because I’ll be more able to take part in things outside my home, like my volunteer work.

Practically at home, I am going rapidly up the wall at the company who should be repairing my boiler. I have had problem upon problem since November and now have no heating or hot water. I feel they have handled the whole thing terribly (7 canceled appointments for a start, having to phone 6 times to arrange a very simple thing, and so on, then them accusing me falsely of missing appointments). Ggrrr!! I know this is just part of life but in the state I’m in at the moment, I can’t cope with this, and feel very frustrated with myself for that. My emotions explode out of all control. Then I get angry with myself because so many people are going through so much worse.

A close friend has serious housing issues as well as a huge number of health problems. I’m trying to be there and do what I can. Cook hot food and support him with form filling and trying to get him a support worker who could help. It is a little way I can try to help and use the knowledge I’ve gathered from my own housing issues in the past.

I’m going to stop here. Later this morning is my last group therapy session and this will be a really really hard lot of goodbyes. I’ve been writing thank-yous and goodbyes, some of the hardest cards I’ve ever had to write. I’m sure I’ll write more about this last session and ending therapy, in the coming days. At the moment I’m struggling to find the words. I’ve cried so much today.

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

 

Feeling very useless again

I am feeling bad because I’ve not managed to post on several things I hoped to and a couple of them I’d promised to. I should just stop saying I’ll post on x at a certain time because too often I fail to! I should be able to stick to these things. It’s not just about posting; there are so many daily tasks that are taking me much longer than usual and things I want to get done that I haven’t done. It hasn’t been a great few days. I keep saying that. I’m trying not to think of them as bad days because that dismisses the good things that can still happen and the fact that the Lord is always bringing good from every situation.

I haven’t been feeling stable. I’ve had a lot of forms to fill in for out of work / disability Benefits. I’ve had to try to explain my conditions and go to assessments. My support worker is helping me a lot and the hospital I go to for therapy is providing supporting letters that have to go along with the forms I submit. Things are not going badly and without my support worker’s help I wouldn’t be getting through it as I am. It’s still difficult and raises a lot of obsessional thoughts. Whenever I talk to people about my health conditions in this kind of context, or ask for help, afterwards the voices go mad and shout at me that I’ve lied and I’m a fake and everything becomes terrible and hollow and full of dread and guilt. I feel so stupid because this means even when things go well and get sorted out, instead of pure relief, I feel stressed and I’m having to overcome what the voices and hallucinations tell me: that I don’t deserve the help, that I’m a fake.

Physically I am really struggling and getting scared by how little I can walk at the moment. I’m needing to sleep a lot. The pain means I’m needing to lie down often and I’m trying not to give into it as I know doing nothing isn’t good for me either. I’ve tried to keep at least stepping outside into my little garden and enjoy so many things I do have which are good, like talking to a friend on the phone, trying to create something pretty with my meditative colouring books, even an interesting TV programme or passage in a book.

I don’t want to keep on complaining and being negative so I won’t keep writing but I just wanted to try to explain how things have been.

Ginny xxx

Managing money with Borderline Personality Disorder

I am bad with money. I panic about it. I’ll panic for days beside being able to sit down to look at my financial situation. Partly this is because it’s usually so dire and it’s a constant background stressor in my mind that sends me to extremes of distress when my thoughts are in the foreground and that I block out at other times. I even find myself dissociating from it. Additionally, there’s the fact that I find it hard to deal with figures and hold them in my head and follow steps through when I’m budgeting. I always did find dealing with numbers hard, even before I was particularly ill.

However, with help, for example from my lovely support worker or my very close friend L., I can list out all my money coming in and my expenses and I can draw up a budget based on that – even though the outcome for months has been that I don’t have enough to meet basic expenses. It may not be workable but I can at least get things down on paper.

It’s very hard for me to get to that stage but that’s not the biggest problem. The biggest problem is when it comes to spending. I have been very bad with money and very impulsive and out of control and I really want to change that. I must change that if I’m to stay out of debt and all the spiralling material and mental consequences.

Even if I have made a budget plan, when I’m most ill I do not stick to it. Best laid plans to waste, as the saying goes… When I dissociate, or flip, I am no longer in control. It’s my responsibility and I don’t want to deny that but I’m not mentally in control. I make decisions and act on impulses and spend money rashly. I act on a temporary conpulsion to buy things I’d never normally touch. Sometimes I know it’s temporarily squashing down the unbearable feelings. Sometimes I’m buying a different life. Sometimes I’m buying for one of my “others” or it’s the “other” wanting and needing it and making the decisions. Often I’m too far gone to have any awareness of what or why I’m doing it and afterwards I see what I’ve bought and have only a dim recollection of why and when i did it.

Afterwards, infallibly, I feel terrible: guilty, disgusted, that I’ve been selfish, greedy, confused, angry with myself, scared, an absolutely unbearable feeling I can’t describe. There’s dread there. There’s shame – a lot of shame. There’s panic. There’s something more. Yet I still do it. There’s always the next time I lose control and dissociate and spend again. I’d call it a kind of manic dissociation that leads me to spending (it leads me to impulsively angry and needy actions too), as opposed to the frozen and numb dissociation that accompanies self harm or the safe dissociation of slipping away from this world into the imaginary one in my head. The manic dissociation is probably the most socially dangerous.

I really want to break this. I can’t stop the dissociation and impulsivity yet but I’m trying to find ways to reduce its impact. It’s become very important right now because, having had problems for nearly a year with my disability-related Benefits, with my support worker’s help we have now resolved the problems and I am due to receive some back-payment of money I should have received some time ago. This is absolutely great for me because it means that I can pay off my arrears and make a stable budget going forward and it looks as if finally I will have enough to live on! I am so so so thankful for this. It also means that I have a lot more money than I usually do (even if only temporarily til I pay the arrears). This is scary because I know that I cannot be trusted with it.

I texted my support worker straight away about the back payment and he’s going to call me this afternoon so that we can make a plan, pay the arrears and make an appointment to look at my budget again now that I’ll have a bit more money coming in. I’m hoping we can come up with some things we can do so that, at the times I’m being impulsive and not in control, I can spot this quicker and ideally, my access to money could be strictly limited at these times. I’m not sure how we could achieve that but maybe he will have ideas.

I know that ultimately I need to get to the root of what’s causing the impulsivity and learn to take back control of my actions at those times and stop the dangerous behaviour. I’m hoping therapy is going to help me find this, though it worries me I’m so far through therapy and still I don’t think I’ve changed in this area. Until I can do that I need to try to stay safe and be as responsible as I can.

I’m interested to know, if you or someone you know has Borderline, or indeed any other mental health condition, does it affect how you / they feel about money and how you / they can manage it? Is it an area you feel vulnerable or find stressful? In all the years I worked at a hospital and in the various services I’ve been seen in, it isn’t talked about very much.

Just recently I saw a useful self-help booklet at the PD Service I’m seen in, on these kind of issues. I’ll share here the booklet here later today or tomorrow (I think there’s an online version). It was about the first publication about managing finances which I’ve come across targeted specifically for patients.

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.

(Br)exit this way…

(Br)exit this way…

[Note: I began writing this Friday 24th June]

Today is a strange day in the UK.

Yesterday the people voted in the referendum on Britain’s future in the European Union and early this morning we heard the results – and we have voted to Leave. Just after 8.00am our Prime Minister announced his decision to resign (you can listen to his speech here); by the Conservative Party Conference in October he will have handed over to a new Prime Minister who will begin to negotiate our exit from the EU. There has also been a vote of no confidence by MPs against the leader of the Labour Party.

I don’t normally write about political matters and I somewhat consciously choose to keep them out of this blog. It isn’t what I want the focus to be. In any case I never feel sufficiently well educated, informed and aware to make a view and comment (I know that’s not a good thing and I’m trying to change it). There was certainly no shortage of conflicting messages in the run up to the vote with each side foretelling disastrous consequences of “leave” / “remain” respectively. Another aspect of politics I find very difficult to get my head round is how the explanation of how our lives will be affected in practice by decisions so quickly gets deeply buried beneath interpersonal and inter-party conflict and attacks. If I listen to a political debate I usually get a clear picture of what each person does not want and who they hate but not a clear picture of what they want to make happen and how it will happen in terms of you or I. The fact I get lost when emotions run high (even when it’s other people’s emotions and I’m just observing) doesn’t help!

I can’t talk about the politics but I can say how it feels. Right now it feels very unstable with lots of unknowns.  I think we’ve made a decision that’s going to have an impact far longer lasting than the choice of a Prime Minister in a normal general election. We haven’t just chosen our leader for the next few years. We’ve made a choice that affects our and our children’s future relationship with the rest of the Union and quite possibly wider than this. It’s a step defining how we want to interact with the wider world and our changed position will no doubt influence how countries much wider than the EU want to relate to us. Already this morning [Saturday] the consequences of our decision are clearly affecting other European countries’ attitude to us, with France among others demanding the immediate departure of Mr Cameron, the choice of another Prime Minister within days (it’s very hard to see how that could be achieved democratically, is it not?) and the immediate activation of the Article 50. In fact in the short term, for all the Leave campaign emphasised the independence we’d get by exiting the EU, these demands seem to suggest we may still be under the influence of the much less open attitude member states will now have towards us.

I switched on the news straight away around 7.00am Friday when the final count had come in. First of all I was stunned. Perhaps that was naive, but I was. I didn’t think the vote would be so close and I thought that in the end we’d vote to remain in the Union. As soon as David Cameron stepped out to address the press, I felt he was going to resign. I was not particularly a supporter of Mr Cameron but I felt real sadness at his speech. Clearly so did he. 

A little later in the morning came a poignant demonstration of the impact the vote has had on people like you or me. A friend of mine is getting married next year and a substantial portion of the money she and her fiance had saved for the wedding and their planned house move was invested. This morning, this money was just gone, just like that, because of the instant effect the outcome of the vote has had on the stock markets. I’m not sure how much it’s possible she will get her money back now the pound is back on the up. As well as hurting for her in the huge blow she’s suffered, I was again stunned. Whilst I had long thought that leaving the EU would be negative economically, I didn’t have a picture of how quickly and how hard it could hit individuals. Was I very unaware? Maybe, but also, I don’t think I’m alone in that. I don’t think there was clear enough information on this kind of impact.

I know that instability and the reaction to the instability is inevitable when there’s a big change and that is not a reason in itself to steer away from a change. But this time I don’t see a clear path of what we are going towards. I won’t go on about the arguments for and against because they’ve been gone through at such length in so many sources already.

One thing that does worry me is that a petition has been raised by supporters of Remain [in the EU], demanding a constitutional change, which would mean that votes with less than a 60% majority and less than 75% turn out of voters were not valid and had to be repeated. This change would then be used to render Thursday’s  referendum result invalid and to call another referendum  (with the objective of an outcome favorable to Remain).

Now, in some ways I can see their point. It is sad that less than 75% turned out to vote on such an important matter. This may not have been because of indifference or even people feeling unable to choose how to vote – there may have been practical impediments, for instance, there were severe flooding and storms on Thursday afternoon which prevented a significant number of people racing the polling stations. This is most unfortunate. I don’t really know quite how it could be organised but I can see a case that we should have found a way to enable these citizens to cast their vote and have it counted. Still, I don’t know that this would have swung the vote the other way. The problems were not so severe as to account for anything near the 25% of British citizens who didn’t vote. Most of the flooding problems were around London, where locally Remain won the vote anyway.

I find the purpose and basis of what is being asked for in this petition to be very wrong.  It has been raised by persons who are not happy with the outcome of a democratic vote in the hope of getting the outcome they want. They are refusing to accept the fact that the majority of citizens voted Leave. I wanted us to Remain but I accept that the majority choice was Leave. We are proud of our democracy. We can’t ignore the outcome of a democratic process just because we don’t like it. Before the vote, it was not stipulated that there had to be a certain percentage majority for the results to be valid. There was plenty of time to consider and apply this if we had wanted to. Again, the petition is calling for it to be introduced after the event to invalidate the democratic results because Remain supporters don’t like it. Plus, introducing a new regulation after the event and then using it to invalidate the previous event seems bizarre and unfair. The law doesn’t work like that. If a new law is introduced, we don’t retrospectively arrest people who “broke” the law before it existed. This should be the same. The only place it would be right to declare the results of a democratic election invalid, in my view, would be if there was reason to think the voting process was not democratic – if people were manipulated, personally threatened or coerced. We risk taking a leap into the territory of trying to control how people vote and manipulating results.

Another rapidly emerging feeling I observe is young people and young voters (teens through early/mid twenties maybe) angry and frustrated towards what they perceive as the older generation who they consider have messed up the future for young people who will have time live with the consequences of our exit the longest. I do not agree and do not think this view is very well founded at all or the accusation fair, but it is powerful. Even in my small circle on social media and at work, this anger is taking hold and turning to hate and angry, accusatory comments. I do not doubt it will soon go beyond comments and real division will be caused. Together with the fact that views are polarised between England and Wales and Scotland and Northern Ireland, it seems we could be heading for a less-United Kingdom!

For me I think it’s clear we have made a lot of decisions based on fear – fear of uncontrolled immigration, fear of losing our identity and independence,  fear of the future when so many people struggle materially day to day. For me, the past week has ensured I’ll work harder to understand what is going on in the government of our country rather than avoiding it feeling too intimidated by the acrimony and extreme views and scare stories that surround it.

Ginny xxx

Ten Dishes #3 – full of beans

This month has been even tighter than usual financially. Someone extremely kindly gave me some groceries to help. I received a few items I wouldn’t usually cook with. Two of these were a tin of ‘tender broad beans’ and timed cannelini beans. I decided to see what I could make with those using just the ingredients I had already in the cupboard.

This was the result:

20160621_193655-1.jpg

It is hard to make it look appetising in the photo however it was actually really nice (though I slightly over cooked the rice)! I used onion, tinned chopped tomatoes, salt and pepper, mixed herbs and some stock. Using half the beans made plenty for my dinner plus another generous portion I put in the freezer. I still have the other half of the beans left over in the fridge to make something tonight. So all in all it has been extremely economical.

I think it was also nourishing and healthy. I’m really trying to take steps to improve my diet at present because it had become so poor due to trying to keep costs down. I am very unhappy with how my weight has been increasing with my medication and I really want to try to take control back in a healthy way that looks after my body.

Ginny xxx