Category: Benefits / Social Security / Social Services

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.

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(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:

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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

To blog anonymously or not…

When I first started this blog, I was certain that I was going to keep it anonymous. By “anonymous” I mean, for example,  I don’t use my full name, I avoid posting anything that would indicate the town I live in and I do not post photos of myself or my loved ones. Recently, I’ve been wondering whether I might change my approach slightly, for instance, disclosing a little more about me, or sharing photos sometimes, or no longer refraining from talking about local groups, services, activities etc that might give away where I live.

It’s a hard decision. I was talking about it with my friend S who suggested “Why don’t you ask other bloggers what they think?” I thought that was a great idea.

So, I’d like to ask you a question: what do you think about blogging anonymously versus revealing personal details? Was this a difficult issue for you? What led you to choose how much you reveal and whether you write anonymously? If you started your blog anonymously but later decided to share more about yourself, or vice versa, what led you to that decision? If you’d like to make any comments I’d be very grateful. Thank you.

I’ll share a few of my own thoughts on the decision I’m trying to make.

Ironically, it’s partly because some of what I post here about my emotions, experiences and relationships is so very personal that I refrain from sharing personally identifiable information. Many of the experiences I talk about are very painful and intimate, especially those from my childhood. If someone I know as an acquaintance or colleague (rather than a very close friend) came across my blog and learned what had happened to me then I might feel really uncomfortable to say the least. At the start of my blogging, anonymity let me write more freely. Also, I didn’t know what kind of reaction I might meet with. Allowing myself to be identified could have made me vulnerable if I encountered unpleasant or harassing “followers”. In fact this hasn’t happened at all; since I started my blog I’ve been very blessed to have caring and supportive visitors to my pages who have become friends and that’s a huge gift.  THANK YOU! It’s now partly because you have become friends that I’d feel comfortable sharing, and indeed would like to share, a little bit more.

However I also know that if I were to be identified my blog might affect not only me but my friends, family and the professionals who care for me.

I’ve written about relationships breaking down and hurt I feel. I’ve shared sensitive experiences that involved others, such as my childhood abuse and relationships in my family when I was growing up. When I mention someone else I never give their name, only an initial sometimes, but if I were to be identified through my blog by someone who knows me (say, through work or a friend of a friend) then other people I’ve mentioned in my posts potentially are more likely to be identifiable too. It’s a small world, as the saying goes, and I don’t have that many friends! 😉 My friends and family may not want to be identified, or they may be upset. The anonymity of the internet does not give me the right to be horrible about people and I try hard not to write personal things about other people or things I wouldn’t say to the person directly. However I’m inevitably only writing my own experience and perception. In another person’s view it may not be balanced. On the flip side of this, I try to write positive things and express gratitude about the good friends I do have in my life and it would be nice to share more of that.

As well as considering my friends, I have to consider the hospital and my doctors and the therapy programme I attend. There aren’t many specific personality disorder services in the UK and if I say where I live, which hospital I attend will likely become clear to anyone else vaguely local with knowledge of PD. I might worry about anyone making a judgment about the hospital or therapy on the basis of what I write. It’s just me, after all.

Equally there is a lot about the support I get that is great and I would like to share this to help others. Having experienced at least 15 years of mental health issues, slowly I’ve come across sources of support and services that can really really help, some in times of crisis and some day to day. A lot of them are not easy to find. I’d love to write about them and how they’ve helped me, in case this in turn helps others and because I think they deserve recognition. So far I’ve held back so as to avoid revealing my location. Perhaps that is over-cautious of me.

You get the picture that I’m in two minds about this at the moment!

Ginny xxx

Pop goes the weasel…

Do you ever have so many things in your head it feels ready to go “pop”?!

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In therapy group on Friday, I felt I could identify really strongly with what a couple of other group members were saying. We talked about so many themes that are really pertinent to my life right now. My thoughts started spiraling and firing off faster and faster in my head and I felt I couldn’t keep hold of them all. I wanted to write them all down right after group as it seemed so important they didn’t get lost. There were so many things I wanted to ask the group members.

I often get spiralling thoughts. In my 1:1 therapy we identified this often happens when I’m starting to experience a strong out of control emotion. The spiralling thoughts are somehow safer or more possible to name than the emotion. Focusing on them can suppress some of the emotion. If I can’t – like in group last week where they were just too fast and I was trying to stay focused on what others were saying – the emotion intensifies and is really uncomfortable, though I can’t name it or understand it. I just know I feel panic. I’m working on trying  to sit with the emotion and explore that rather than plunging straight into compulsively following the thoughts.

Interestingly, my thoughts used to do something similar when I was studying. I’d frantically try to get them all down. They seemed important. Sometimes they were and sometimes they were not. But it was often really hard for me to explain the links between them to other people or get them down coherently.

Writing this, it’s occurring to me – does this sound like I experience manic episodes? I have never felt as though I have manic periods in terms of hyperactivity or boundless energy but can manic episodes affect your thoughts alone? The spiralling thoughts can stop me sleeping and if i miss any medication doses at this time i can end up going all night without sleeping. Though the thoughts take the focus away from the uncomfortable emotion at first, eventually it returns, often more extreme than before and together with a lot of anxiety and physical exhaustion.

After the spiralling thoughts have squirmed and pushed their way round my head for a while, it’s as if part of my brain shuts off. I feel frozen inside my head. It’s a huge effort to fight to interact with people and speak and respond appropriately. I can’t bear the emotion and spiraling energy. It hurts. I can barely understand what’s happening round me. I want to get out. Go home, shut off and curl up somewhere safe, or have someone hold me (though there’s almost never anyone. ..) If anyone talks to me and I’m required to interact I am likely to somehow jump to irritation and frustration, though it isn’t really irritation I’m feeling inside.

I’ve never talked to my therapist about the idea of manic states but perhaps I should. Do others with Borderline experience this kind of thing, I wonder? Do you struggle with this?

It’s been worse in the past week or so because I’ve had more stress with my Tax Credits being stopped and consequent further financial panic. I’ve also been exhausted from low physical health with a lot of pain. Every day off has been taken up with hospital appointments and trying to sort out my finances. I’m worried I won’t be able to keep up my job as I’m struggling with the physical aspects of it and it is also very discouraging that pushing myself to the limit of what I can do to keep working, I’m left without enough to meet basic expenses. I’m so fortunate I have a very good friend and a family member who are helping me from time to time. Without them I think I’d have ended up on the street by now.

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

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

 

One of the most dangerous ways to react to someone with BPD who is asking for help when they are suicidal or self-harming

 

 

TRIGGER WARNING: fairly massive warning on this one that this post discusses suicide and self harm and issues around getting care in crisis…

Yesterday I was met with one of the most punitive, ignorant and dangerous reactions I have had from a medical professional. I wonder if people who react like this actually do not realise the genuine danger patients are in and how much further into danger this kind of reaction pushes us.

As I write this post I want to be clear that I am now safe and have received help and I am not posting this to alarm or worry readers about me. I’ve been seen in emergency services and eventually had very supportive care, which I will post about in due course. Please don’t panic about me. I am now safe and have had help. I just think what I experienced earlier is a massively dangerous issue that needs to be highlighted.

Yesterday I was absolutely unable to cope. The pressure of my housing situation, financial problems, threat of losing my flat, trying to discuss things with my landlord, my physical help, repeated errors from benefits services and other supposed sources of support, the lack of help over the past 5 months or so when I’ve been at my lowest points, the voices and flashbacks and nightmares – everything boiled over and again I was in the place where the pain and emotions and loss and guilt blocked out any ability to carry on.

I lost it and I was at the point of trying to end my life. I knew how I was going to do it. I had tried and tried but had nothing left.

I spoke on the phone to the GP Surgery. Somewhere, I guess some part of me was still wanting some kind of help or at least daring to tell someone. (They had called me over issues with a mess up over the prescription i should have had; I’d again been left without my medication. ) I admitted what I was feeling. I begged to see someone. I don’t know what made me do that, ask for help when the decision was already made in my mind that this was it now and I’d come to the end. But I did.

I admitted that I wanted to end my life and that I was self harming. I admitted that I had the tablets to overdose. I asked to be seen and that I needed help now, could they see me or get the crisis team? I said how all the mess ups with my prescriptions and benefits and no help in crisis were piling things onto me and making it more and more impossible to cope. I was having hallucinations and flashbacks. I had been asking for help for months. Now I could not go on anymore, I was going to end it. I needed help.

The GP spoke over me from the start. She told me that “you have to be extremely careful about how you are coming across” if I expected to get any medication. She then told me repeatedly, in response to me admitting that I was suicidal and self harming, that “that is not a fair threat to make to people” that “you will find I do not respond to threats” and that I am a responsible adult able to make my own decisions and there is no reason that I should take an overdose. She then announced that she was going to end the call and hung up on me whilst I was begging her to help me.

If Someone with Borderline, or any other mental health problem, admits to suicidal thoughts, plans or intentions, or self-harm, it is the most incredibly ignorant and dangerous reaction to treat them as though they are making threats in order to manipulate and must be punished accordingly. The stereotype that people with personality disorders or any mental health problem are manipulative, or that being suicidal or struggling with self-harming  is attention seeking,  are extremely dangerous. It is all the more dangerous when it is trusted healthcare professionals acting on the basis of these stereotypes when their patients have dared to ask for help, meaning that when we are in immediate danger we are dismissed, punished and rejected.

Experiencing suicidal thoughts is not attention seeking. Self harming is not to create drama or cry for attention. Admitting that you are in danger and want to end your life, that you are absolutely at the end of the road and can’t go on, that everything being piled on you is pushing you nearer and nearer the edge, is not making threats. The attitude shown by the GP today makes it impossible to ask for help when we are most in danger. I now know that if I admit to the terrible thoughts and feelings, I’ll be treated as though I’m manipulating people and will be rejected. If patients are treated like this, suicide and self harm is made something that must never be admitted to or talked about and for which help can never be sought. If patients are treated like this, all the feelings and events that have brought them to the point of suicide are dismissed in an instant, as our position is made out to be manipulative fabricated threats rather than complete brokenness.

Yes, I am an adult. Yes, I am responsible for my actions. If I self harm or attempt suicide, it is my action alone. If I cause myself harm that is done by me alone. That does not mean that the experiences and emotions behind my actions are not real, that I am not in danger,  that I am fake. No longer being able to carry on doesn’t mean I am manipulative. Asking for help and admitting to the horrible things in my head doesn’t mean I am making threats. Asking for help doesn’t mean the feelings that make me want to end it aren’t real. The fact that if I do something to hurt myself, it’s my action, doesn’t mean I’m not in danger and don’t need help.

I’m terrified of manipulating or hurting people I care about. That’s why I hide my self harm and did not tell anyone for years, why I usually don’t ask for help after overdoses… I’m scared that people may feel responsible for saving me… and the self-harm itself started in order to punish myself and hurt myself to turn it all in and not let the horrible things in me hurt anyone else, and overdosing  is sometimes about utter pain and sometimes utter rage and loathing at myself and fear of who I’ve hurt.

People who are self harming and/or on the point of attempting suicide are not nasty manipulative frauds, they are in massive pain and massive immediate danger. They do not need punishment and dismissal. They need a place of safety and compassion and they need desperately for the hurt and the danger they are in to be believed.

It is terrifying to admit to things like how close you are to suicide or that you’re overdosing. I never say it to friends (though two friends have sometimes guessed) because I do not want to make them feel responsible to keep me safe or worried I’ll do it again. That’s one thing.  But it has to be possible to admit it to healthcare professionals, if there is to be any way to get help.

Yesterday, my life was saved by a police officer who recognised the danger I was in, and by the emergency team who assessed me when he took me to them, and by the mental health workers at the safe haven I was taken to. I owe them my life. Thanks be to God.

The safe haven is a new organisation that has been running for just two weeks in my local area and I think massive good is going to come of it. I’ll post more on that going forward. Please God can that be the support other people find when they are in the state I was in yesterday, not reactions like the one I got from my GP. Sadly I think I’m not alone in what I encountered. And this isn’t the first time. I’ve encountered similar and worse lack of recognition or response to the danger I was in, and accusations of making threats or being manipulative,  from within the personality disorder service and in crisis teams.  If i am ever recovered enough to be able to somehow try to help other sufferers or explain to people what BPD is like and how to help someone in crisis, tackling this would be a massive priority for me.

Ginny xxx

It just doesn’t stretch, whatever I do

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ginny xxx

Is that an absinthe with your coffee? – These fragile little changes.

Is that an absinthe with your coffee? – These fragile little changes.

Wednesday was a really difficult day. I had come back from my stay with my friend and my goddaughters and started to have a glimmer of the thought that perhaps, mentally I was feeling a little bit better for the first time since well before Christmas. I wanted to hang onto the good that the weekend with my friend had given me.

In what has become a frustratingly typical pattern, as soon as I began to take hope in this and the idea that I had a rest day to recuperate before going back to work the next day…. bang went that one.

First I got a letter about my Housing Benefit. Somebody thinks I earn nearly £300 per week and therefore they have stopped my housing benefit. My claim had already been suspended for several weeks whilst they recalculated the (clearly extremely complex – ahem!) change to my income caused by the fact that I am working 2 more hours each week. So I have been receiving no benefit whilst waiting for the decision to be made, and hoping to receive a payment. Now they have stopped it completely so I have nothing. £300 per week coming in would certainly be nice but certainly is not true! I have no idea where they got that figure from. It’ll be another trip to the Housing office on Tuesday to try to sort this mess out.

Then I spoke to the CPN working with the Victim Support services. She had been meant to call me a month previously. I am still too upset about what she told me and how she handled things, to be able to write very much about it. Basically she still flatly refused to help me or even in her terms “signpost” me to support.  The Personality Disorder Service have given her the impression that they are doing trauma work with me and meeting all my needs, which is just absolutely untrue. They are not, they have told me they have no intention of doing it, and they are not helping me access the services that would do it. She continued to block me at every turn as I tried to suggest ways she could help me.  Apparently I am just not allowed to have the support any other victim of crime would receive, just because I have a personality disorder, and apparently, everyone thinks this is fine and wonders why I’d need any help with the nightmares, hallucinations, flashbacks, panic, etc, etc…

I was in complete distress after that call. Once again, I felt as if I’d been tricked into trusting someone, brought to the edge, cut open, left as raw as possible (going through the inevitable distress of making the statement and reliving the memories and the vulnerability of having started to trust somebody to be there), then kicked, ridiculed, not believed and rejected. It was like going through being a victim of someone’s abuse and deception again.

Something inside me was different this time. Something resisted the instant urge to cut and cut til the noise stopped and overdose to freeze everything out and enter the safe, numb world and preferably lose consciousness. Perhaps there was some little thing inside me, built up during the weekend with my friend, or built up from the strength of having resisted self-harming for several days, and the grace and mercy of my God. This time I decided to make it different.

I didn’t shut myself away. I stayed outside and walked. I went to a cafe I know I like and that feels safe. I ordered a coffee (it’s the best coffee there, in my opinion) and the suspicious green concoction pictured. No, it isn’t absinthe 😉 don’t worry. It’s a very refreshing drink made from almond syrup, mint syrup, ice and very cold water. Odd, I know. LS., my favourite barrista there, invented it. Anyhow… so I ordered my coffee and I sat and wrote down everything I was feeling about what the CPN had said and how I’d been treated by her and all the wrong information that had been passed from the PD Service and other sectors of the mental health trust. I sent the PD Service and email to say that I would now be making a formal complaint. I also sent them another email requesting in writing the discharge summary / care plan and letters they have so far refused to allow me a copy of.

I went and got my nails done. I went home and made myself some food for dinner. Okay it was only cooked frozen veg and chicken with considerable assistance from Captain Birdseye*. But it’s the thing most reminiscent of cooking myself an evening meal that I’ve done since autumn. After dinner I didn’t binge-eat. I had some more coffee and I made several greetings cards. (Hand making cards is a hobby of mine when I’m feeling more well.) I took the proper dose of my tablets and I slept. I had nightmares and had to move back to the sofa half way through the night, but at least I slept in the bed for a little while.

So, you see, I did what I could to break the pattern and keep some strength going and not resort to only what hurts me most. Instead of cutting and cutting the hurt into myself, I wrote it all out on paper. Instead of imploding I started to take action, beginning my complaint. Instead of agreeing with the voices shouting ugly, evil, liar, etc, I pushed them away and did something nice for myself and something nourishing. Instead of letting the destruction going on in my head take hold, I tried to create something positive and pretty.

Here’s to these little changes.

Ginny xxx

[*For those readers not from the UK – “Birdseye” is a popular brand of frozen / part-prepared meat and fish products; Birdseye fish fingers used to be advertised by the character of “Captain Birdseye”]