Tag: support worker

Needing too much again

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

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

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

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

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

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

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

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

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

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

Ginny xxx

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

 

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

 

My latest creative projects

This week has been demanding with two medical appointments, an assessment for a disability benefit I am hoping to claim, meeting with my support worker, taking documents about my changes of circumstances (now signed off from work) into the housing office, catching up on filing a massive stack of paperwork which keeps pouring in thick and fast at the moment as I am sorting out different Benefits claims, and a difficult situation in relation to my therapy group, which I’ll post more on shortly.

I’ve been really needing some calming time amid all this. Colouring is still my go-to calming activity at the moment. Also, I’m continuing making greetings cards and have got together some photos to use to make some for a friend who has requested some. It’s lovely to do them with a particular person in mind and I’m happy they are good enough that someone would actually request them.

Here is a picture I’ve just begun colouring, from a book called “Secret Garden” drawn by the amazingly talented Johanna Basford.

owl for M.jpg

My step-brother graduated last week, so I made him this little card with stars on the front, putting to good use some of the materials my friend kindly gave me for my birthday the other week:

congrats 1.jpg

This week I need to tidy and organise my card materials, as everything is thrown in a box together and I am sure there is quite a bit I’m not making good use of!

I’m thankful that I have these hobbies which I can still do fairly much unaffected even when my physical health isn’t great.

Do you have a favourite hobby that helps you relax?

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

Broadband is on the way

Today my support worker helped me arrange getting the internet set up at home. Since I moved in I’ve been relying on the internet in the staffroom at work, on my mobile and in cafes with free WiFi.

It’ll be a huge bonus to have this sorted. I won’t be so slow on replying to your lovely comments! I’ll be much more able to take time to read your blogs. At the moment I feel bad that whilst I write and I really am thankful for the time you all take visiting here, I am not able to reciprocate properly because of my limited internet access. You are so supportive and I feel that you are becoming my friends and I’ll be very happy to be able to be more in touch and read your news.

I’ve shied away from getting the internet at home because of adding the cost of another direct debit to my already dreadful finances. However, my electricity and gas supplier offered me a good deal for supplying broadband and a phone line for the next 18 months. My support worker H has helped me compare some different price options and we figured out that this would actually be cheaper than what I’m spending to get online currently. I’m currently paying extra on my mobile phone bill every month as I have to “bolt on” more data when I go over my allowance. Also wifi may be free in cafes but sitting in the cafe is not as you have to buy something.

Again it was invaluable to have H’s help as making the call to get everything set up and choosing between the different packages on offer was overwhelming. I don’t trust my ability to choose and I panic and find it very hard to hold on to all the facts and numbers in my head. My brain just seems to freeze when the provider speaks so quickly on the phone about unfamiliar terms and charges. I either blank totally or my thoughts and emotions spiral out of control. It really helped having my support worker there to do some of the conversation and to check things with and to help me work out the figures.

So in all, I’m looking forward to being online some time in the next two weeks. I have to wait for the engineer to call to arrange installation.

Ginny xxx

A shaky week

This week I planned to get all caught up here on comments and visiting your blogs. However as so often happens, things took a different term and I seem to be as useless as the proverbial handbrake on a tortoise. And moving at a similar speed too!

This hasn’t been a very stable week. I had a meeting with my new support worker, a difficult consultation with my GP, two relationships breaking down very painfully, an important but emotional group therapy where something that occurred brought flashbacks of a frightening incident in my childhood for which I feel responsible. Also I got some very unexpected news and had a conversation that seemed to throw everything. I’ll post about it in due course once I’m more able to cope.

Not big things in the grand scheme but I’ve got behind again. So once again, I’m sorry for being so slow to answer messages. I care and I’m praying for you and I’m sorry for how I struggle to write.

Ginny xxx

Not my day off

Today has been demanding. It’s one of those days that seems too much to have been only one day. I got big stuff done but also I’m losing time in unsettling ways and I know I was dissociating a lot between the different tasks and meetings I had to do, slipping out of being engaged with what’s going on and what I’m feeling and struggling to come back. Nevertheless I got through quite a few challenges.

Last night I knew I needed to tidy and clean my flat. My support worker was coming today. Also I hadn’t been on top of the housework since my operation and it was bothering me more and more. Recently I’ve started to find a greater sense of order and calmness if I don’t have too many things disorganised around me. This is interesting because til now, I’ve tended towards accumulating things I don’t need and not being able to keep my house ordered, not exactly hoarding but not being able to face items and paperwork and household tasks without going into panic.

Yesterday I was very anxious about today but put some of the physical drive from the anxiety into cleaning and then went on to clearing out some of my cupboards. By late evening I’d cleared 7 big bags (between rubbish and charity shop) and set 3 more big bags of things to try to sell at a car boot sale. The fact I don’t have a car for the boot element of that plan is potentially problematic 🙂 but there are the odd few table-top, largely indoor, sales in community centres / church halls here in the summer and I’m hoping I can find one to join in.

Today was a struggle to get up. Everything hurt. Still, I got together the papers I needed to show my new support worker (more on this tomorrow), then it was off to my care coordination appointment with my CPN. This wasn’t easy to go to because, although my last appointment was okay, in the two previous appointments I’d been really distressed and felt I didn’t get heard when I was desperate and at risk. Today’s appointment was actually really good. We looked at some DBT skills and we did a review which was overdue (every 6 months or so is a review appointment). I’ve not yet felt able to discuss with my care coordinator exactly what went wrong in the difficult appointments earlier this year when everything was going to pieces. I’m scared I’d lose control and the feelings of anger and not being believed would return and I’d do bad things and be back where I was. However my care coordinator and I have managed to move forwards having 2 positive appointments. I was scared after what I’d done – how upset and angry I’d got – he wouldn’t believe me or want me anymore and they’d know how bad I am and that I didn’t deserve help. That hasn’t happened. That’s something that I don’t usually get to experience.

Straight after my care coordination I met my support worker, H., who is from a housing support charity I was referred to recently. He is going to help me sort out my benefits like Housing & Council Tax Benefit, Tax Credits and disability benefits,  as well as liaising with my landlord about the rent arrears that I got into when I lost my job last year. It was a long appointment. We went through the background to how I’d got here, financially and in terms of my health, and we looked at lots of documentation, my income and my benefit and Council Tax notices. This took a lot out of me and I came so close inside to panic and losing it and emotions shooting too high. H. was very calm and non judgemental, which helped a lot. (More on this in the next couple of days.)

Then I had to rush to my GP appointment, which was the first since I’d been very distressed and angry at the surgery a couple of weeks ago;  also the first since my operation and finding out endometriosis isn’t actually the explanation for my pain and gynae issues. I’m still working through what happened in today’s appointment. I was dreading going into the surgery because I’m still terrified of what I did and how much I lost it. I was ashamed and embarrased and knew that they probably didn’t want me around again. I knew I’d really upset and inconvenienced and disturbed people. I’d scared people. That’s the worst thing,  the harm I caused, the bad I’ve always feared getting out of me. Talking to the GP  and discussing what happened and then also talking about my physical health was really emotionally charged.  It’s hard trying to deal with a lot of uncertainties about my physical symptoms. I know not having endometriosis is a really good thing but not having any explanation for all the things I thought it explained, and the fact the doctor isn’t really interested any more in investigating what may be wrong – well, that’s hard and triggers all my fears that it’s all in my head, I’ve made it up or I’m mad, it’s my fault. …

After the GP it was off to the pharmacy with my prescription, then finally home.

It’s been quite a day. I had a soothing bath tonight. Today was the first day I could have a bath since the operation (don’t worry I promise I did still wash 😉 !). The doctor sealed the wound with dissolvable stitches so it was important not to soak them in water too soon or they could have come undone. Also it was not safe to try to get in and out of the bath whilst my mobility was further reduced with post op effects. Falling is a risk for me anyway because of the problems the fibromyalgia and arthritis cause in my legs. So, tonight was a good little relaxation and refreshment. The little things do help!

How has your day been?

Ginny xxx