Life admin, abandonment and loneliness

I've had some really up and down days recently. When you live with Borderline Personality Disorder life is very much like a rollercoaster at the best of times, but recently those lows have been very low. I've had days where the blackness has rolled in and I feel severely depressed and suicidal.

I have been pondering on my triggers and there's been a number of things going on for me. One is that I feel overwhelmed by life and all the admin and appointments that never seem to end. The weekly grind of washing and cooking, dishes and supermarket shopping, housework and garden maintenance. I very quickly get overloaded. I lack the executive function to keep my house tidy or remember where I've put anything as I get distracted very easily, but a messy house also really stresses me out. Losing and forgetting stuff constantly is also really stressful. There are days when I don't want to come home because the house is messy and I can't seem to tidy it up. I can spend several hours "tidying" but still not have a clean and tidy house at the end as I tend to deviate off task and get really distracted. And the more I have going on in my head the less likely I am to be able to cope with the basic day-to-day and week-to-week tasks. This end of the year also seems to fill up quickly with my daughter's school stuff, end of year events and birthdays so remembering our schedules and fitting everything in adds more pressure. And yes, I have a calendar with colour coded schedule, plus a note book of reminders, I make lists, I set alarms and reminders on my phone etc. Even with all this 'help' to remember things I still feel overwhelmed and anxious about having too much stuff on my plate.

One of the other things bothering me at the moment is that my nurse case manager left. I tend to get very attached to people and I have a really hard time letting go. This one hurts a bit as I thought she understood that so might have given me an opportunity for a bit more closure. She's been my case manager for about 3 years and we'd had a really good appointment last time I saw her in September. She said she'd ring me in about a week or so as she was going to be away for a few days. And I didn't hear from her and I kept thinking I'd ring but then thinking she might be busy and she said she'd ring so surely she was going to... At the beginning of November I rang her because I was having a really bad couple of days and wanted to arrange an appointment and she told me she'd resigned. I mentioned it to my psychologist and apparently he'd asked her to tell me but she'd forgotten and that was her last day so she's gone. And I feel disappointed and upset. My head knows I was just another case to her and she told me herself straight up when I first met her that it was not her job to be my friend. I had just thought she might say goodbye in person and I feel abandoned. Not great for a person with BPD who struggles with feelings of abandonment most of the time anyway.

My psychologist and I were talking a bit about what I expected from a case manager and discussing options going forward. I mentioned that when I ring them I expect empathy and validation, not necessarily a solution to my problems. Having been through a modified version of DBT I have strategies in place which mean I get through most days mostly ok by myself. But every so often (once a month or so) I have a really really dark time and I need some extra help and that's when I call. Often I get suggestions aimed more at what I'd imagine would help a depressed person, but not necessarily helpful in my situation. My psychologist asked me if I would ring more often if I did get the empathy and validation that I want. I told him that I wouldn't for several reasons, one being that I absolutely hate asking for help, and another being that I hate using the phone lol. But also that I tend not to ask people for help (not just the services but friends and family as well) as I am conscious of not putting too much burden on any one person. 

I have been thinking about that question this week and whether he is right, would I reach out for help more often if that help was more likely to meet my expectations in that moment? Then I came across this post on The Mighty today and this bit sums up what I said to my psychologist last week 

"but I also know loving someone with borderline personality disorder can be overwhelming – to say the least. It’s one thing to have a meltdown every couple of months, but it’s entirely different to live with a disorder as unpredictable and intense as BPD. To avoid “burdening” those around me, I tend to bottle these feelings, fearful of “overreacting” or pushing people away. I know most people won’t really understand, and I don’t want to bother my friends with my third crying spell this week."

The Loneliness of Living with Borderline Personality Disorder

To me, that perfectly sums up why I try and keep my issues to myself on all but my very worst days. Because no matter how empathetic and understanding someone is, supporting a person with BPD is no picnic and I don't want to wear people down or make them resent me. My psychologist is the "last man standing" so to speak of my team of professionals - my case manager having left and my psychiatrist resigned earlier this year (I've had locums the last two times) and I am conscious of not making myself too dependent on his help. I worry that he'll leave like they did, or that he'll get sick of me. 

Constantly having to decide how much of yourself to reveal to others is very tiring. During every interaction with other people I filter what I say, and I try and make sure I don't come across as needy or dramatic or pessimistic or "spiky"/angry/difficult - all of which I have been told I am by others before. Then there is conversations where I could contribute something but it might reveal more about my mental state and how will that come across and will it make the other person uncomfortable. And then there is trying to sort out whether am I talking too much or being too opinionated? And understanding what other people are saying, in words and body language, which is sometimes just as difficult. Not to mention actually hearing people as filtering out background noise is hard for me and sometimes the I don't hear all the words or my brain doesn't get the message fast enough. 

I isolate myself, especially when I am depressed, which is not something I do on purpose. I enjoy being on my own, but its also a relief not to have to constantly monitor myself.  Communication is such a bit part of life as a human but also a massive source of stress for me as well. Sometimes it is easier to be alone, even if I am lonely.

Waving in the dark 

Kia Kaha

Feeling low

This is a bit of a poor me whinge, which I wouldn't normally do but I am feeling really low at the moment.  Hopefully getting typing it will get it out of my head and end up being cathartic.

I just feel like I'm not getting anywhere, like everything is against me. I had planned to work on Sunday, I couldn't log in to my client's server as it was offline. I got up early Monday morning to get some work done and ended up with more of the same IT issues. I lost 3 more hours of work time.

I can't concentrate or keep the house tidy or get myself to bed on time or remember anything. I just feel like somebody has taken my brain and left just an empty shell.

I spent 2 hours yesterday working on something that turned out to be my misunderstanding, and when I started work today I found another mistake I'd made yesterday and had to take time to fix it all up.

I washed G's sheets and mattress protector on the weekend and hung all her blankets out to air in the sun. Made the bed last night and she wet it. So the first thing I had to do this morning was wash the sheets and mattress protector, the same ones I did on the weekend. It's so frustrating. She's 9 and she is getting better at not wetting at night. I have to keep reminding myself that this time last year she was wetting every single night so once every second week is a big improvement. But still so frustrating.

Then she pulled out her shoes from the school trip yesterday and they were caked in mud. So I had to wash them and it's stormy/raining today and predicted to tomorrow as well so they'll take several days to dry.

Got to my lunch break today and I opened the connecting door between the garage and the house and a blackbird flew into the house. It likes to sneak into the garage and eat the biscuits out of the cat's bowl (garage door was open) and I must have startled it. It flew through the lounge leaving a trail of shit on the carpet and walls. Then I spent a while trying to coax it out the sliding door. So my lunch break was spent cleaning bird shit off the inside of my house.

I've been trying to set up my own business as an accountant but if I want to file tax returns on my client's behalves then I need to become a tax agent. That means that instead of having to file a tax return in July, people have till the following March to file. To be a tax agent you have to have at least 10 people signed up who need tax returns done. It's taken me a while to get there as convincing people to sign up with me when I'm not a tax agent and don't have that extension of time till March hasn't been easy. I can't properly run my business without tax agent status, but getting it is challenging because of the minimum client requirement.

I finally got to the 10 client threshold and applied a few weeks ago. IRD rang this morning and said they don't want to accept two of my people as they may not have to file tax returns this year (individuals don't have to file tax returns in this country except in certain circumstances). I think (hope) I have convinced the person I spoke to from IRD that I have other clients lined up to sign with me (not a lie, I have at least 2 more, with a possibility of more) as soon as tax agency is sorted. But again I feel so frustrated that I can't advertise and get clients till I have it but the IRD won't give it to me unless I have clients.

I've got lists a mile long of things to do but things keep popping up and then I spend all my time fire fighting instead of working through the list. I have this weird dichotomy where my brain feels like I'm on overdrive but I also feel like I'm moving through lead. Sigh. Must get back to work I guess.

Musings

I do not tolerate this low mood well. First I want to know what’s causing it, what can be done, how to fix myself. I am motivated at first. I keep busy. I read a lot and go to bed on time and get up on time. The fog deepens and my enjoyment seeps away. I make more effort to spot beauty in every day moments, notice the lone white rose growing on the otherwise barren roadside rose bush, the bird song, the things that make me smile. But each lift is brief, and bittersweet. Like patches of colour on a black and white photo. I feel like I’m missing something. The theories I’ve read should fit together in some way but, the puzzle has been tipped on its end and I can’t see the picture. I feel my failure to slot this together keenly. I would just get better if I tried harder, thought more, was smarter and nicer and all the ‘ers' that aren’t me. 

Perhaps the irony is that I know the harder I try the less likely I am to succeed. The trying puts pressure on me to find the right response. I analyse and overthink instead of using my gut. Last week I had some flow, not a lot, just small patches where I had confidence in myself and trusted my innate creativity to come up with the right path. But knowing it was there makes me push for it, which in turn makes it slip out of my grasp. My brain goes round and round, percolating on ideas and theories of how to solve my chronic health issues, my mental health problems, deal with my ASD and my child’s. As I twist the ideas, trying to pull them together with a common thread, my brain works harder and harder. 

I am started to feel pelted with ideas. I could start this project, do this painting, build this shelf, tidy this up, move this here, get rid of that and buy this. Is this healthy? Am I producing too much waste? Is my heart ok? Is my child doing ok at school? Am I lonely? Will I ever be able to buy a house? Do I want to? Should I buy new socks or would that be wasteful if my other ones don’t have holes but are uncomfortable? Where’s the best place to get socks?.... and on and on about every topic. I feel overwhelmed and then suddenly unable to make even small choices, about what to wear and eat and when to go to bed. And suddenly I’m back to the beginning where I’m not getting enough sleep or exercise or taking care of myself or my house. Then I have to pull it back and start again. Find the motivation to go to bed early and practice my self care. 

Underlying all that is a pervading sense of failure each time the cycle repeats. This time I’ll be consistent. This time I’ll do better. I’ll make sure I don’t fail. And the ever present thoughts of what the hell is wrong with me that I can’t even sustain the most basic things for longer than a week. 

Communication

I've been thinking a lot recently about social media and social contact in general. I give myself quite a hard time as I don't respond to messages or initiate contact much. I can see I have an email/facebook post/message/text etc but I often avoid reading them or responding. Even when I really care about the other person. And I am hopeless at initiating contact. I exist in my own little world quite happily. It's not that I don't like other people or want friends, or that I don't care, it's just that I find socialness really hard. Other people's emotions affect me, conversations and thinking about how to respond are hard work, and I am a real introvert, probably bordering on anti-social. 

I also have a really hard time picturing people's faces and remembering what they look like. I suspect this is related to my ASD tendency to avoid eye contact. I often look past people or in their general direction rather than at them. And because I can't see much out of my left eye, if they sit on that side of me all I get is a general impression of them anyway unless I turn my head so my right eye sees them. But even remembering my own family, my daughter, my parents etc is hard for me. I know people's hair colours, and I can usually pick if they've had a haircut. But facial features are hard for me to pull together in my head. My memory of people is usually with blank faces, sometimes with hair. General colours are there, but I can't picture certain features. And interpreting faces and expressions is not my strong point at all. There's some new research being done around this and the role of what's called the fusiform face area in recognising and remembering faces. This article and this article are particularly interesting. 

When I was a teenager, my dream when I grew up was to be a hermit. Preferably living on a remote property in the Coromandel where I wouldn't have to see anyone and I was a long way from anything except a good beach so I could surf as much as I wanted. I had no desire to have anything except peace and quiet. I still have that dream, though owning a piece of property on the Coromandel anywhere near a beach is probably way above my pay grade!

I carry a lot of guilt about not responding to people and messages. Right now I am avoiding responding to two text messages, two Messenger messages, a Linkedin message and at least one email. And that's just social stuff from the last two days. There's other messages I haven't responded to from weeks back. I'm also avoiding cancelling an appointment, emailing G's teacher, emailing an invoice (that one is a must do, I want to be paid!), emailing a potential client, making a doctors appointment.... the list goes on and on. The social messages are important to me, and they are all from people I like and care about. But I have a lot of trouble thinking of how to respond. Some of them want commitments from me, like making a time to catch up. Others just require a response to a comment or question. And the general household stuff just needs doing! But communication is often beyond me.

I think that would surprise a lot of people that know me. It's probably no secret that I am slow to respond to messages, but I feel like my level of procrastination is higher than most of my friends would guess. Maybe not my family though, they know how crap I am at communication! 

One of the things that they expect you to be able to do when you are a psychiatric outpatient is talk to people and ask for help. I however am an expert at avoiding phone calls at all costs. I find it incredibly difficult even when I am not in distress to pick up the phone and ask anyone anything. Add mental distress to that and I am almost a lost cause. Because of that, when I am unwell I don't get the support I need from my case worker and that often makes me frustrated and angry. I don't know how to communicate in a way that will achieve what I need. If I can force myself to ring I never manage to put across what I am feeling, despite rehearsing what I could say in my head dozens of times, sometimes for days before I work up the courage to pick up the phone.

Compounding my distress, often when I am mentally unwell my ability to put words together in a way that makes sense is often diminished. Sometimes my speech is really fast, or really slow and hesitant. Sometimes I stutter and stumble over words. Sometimes I get them mixed up and say day when I mean night, or yesterday when I mean tomorrow. Or I can't remember the words at all. Sitting there, knowing what you want to say but being unable to find the words to communicate so that you are understood, is really difficult.       

When you have BPD and you get frustrated or angry the emotions often come on suddenly, and very strongly. I can go from upset to intolerably angry in about 2 seconds flat, and that will make me do things I regret later. I have shouted at various mental health professionals, been rude and snarky to people, become mute when things haven't gone my way, point blank refused to do certain things asked of me, argued with people, stormed out of meetings, been fired as a patient by a psychologist and 2 psychiatrists, and generally thrown temper tantrums. I am not an easy patient to deal with and I'm not proud of that. All of these things are tied up in my inability to communicate with people, and my extreme sensitivity to anything that could be perceived as an insult or criticism. And once I am angry I tend to give in the the fury and it takes a while to come down from that. 

I think my social behavior, my difficulty in communicating and my inability to remember faces or read them very well are all tied in to ASD. My current theory is that my ASD produced many situations that I did not have the ability to cope with and caused me confusion and overwhelm. I didn't have a diagnosis, didn't understand why I was different and thought there must be major flaws in my personality. On top of that I was overwhelmed and confused much of the time. This, along with some less than ideal circumstances and trauma in my childhood and teens, caused me to develop dysfunctional coping skills which in tern has led to BPD. I also wonder whether the fact that I strongly believed my personality was flawed led me to try and suppress it or get rid of it, leading to the unstable sense of self that is so central to a BPD diagnosis.

I am not sure why it matters to me how I have ended up with the conditions I have. On reflection tonight I feel like if I can somehow find the connection between all of these things, these odd bits of me, then I can get a handle on "how to be me". Like trying to unravel a complex knot, where you feel like if you can loosen it enough you'll be able to find the end of the string and it will all just fall undone. I think I have this hope that one day that will happen and I will magically just know how to cope with my life.

An update

So, I haven't posted for about 6 months now. There's been a lot going on, and one of the things I have had to consider is how much I should be sharing with other people and why I am sharing it. Some of the issues I have also affect other people and it's hard to know how open to be, but also difficult sometimes to write about things when you have to leave out the bits that might involve other people.

December was a really difficult month. I traditionally don't cope well around Christmas time anyway, and 2017 had some family and financial pressure, plus my medication had been decreased which I did not react well to.

My new (at the time) psychiatrist had said that he was of the opinion that I was heavily over-medicated and he wanted to decrease my Venlafaxine dose. I was all for trying this as my ultimate aim is to come off meds altogether as I don't believe they are helpful long term for people like me with BPD. I'd already started decreasing my dose over the previous year with the help of my last psychiatrist, going from 375mg down to 225mg over about a year or so. With my new plan I was to drop down to basically nothing over about 3 or 4 months. 

I'd had terrible withdrawal symptoms with all my previous decreases but managed to get through them. Unfortunately, this time the plan called for dropping by one dose (37.5mg)  and then after a few weeks, dropping by another dose, and so on, and my body couldn't cope by the second decrease. I went into withdrawal which for me always starts with feeling like I am getting some kind of virus. This was followed by brain shocks, headaches, nausea, and dizziness. This was on top of worse mood swings than normal and higher levels of suicidal ideation. I tend to have rages where I know I am being completely irrational but I can't seem to calm down after being triggered. 

My brain often goes AWOL when my meds have been changed, and I was also having trouble stringing a coherent thought together and holding a conversation. Not helpful when you are working and trying to communicate with clients. 

After discussing my issues with the team at community mental health (CMH) my dose was temporarily increased for a few weeks till I re-stabilized, then it was time to try dropping it again. I was pretty worried by this point, given my history, but agreed to try and see what happened. It was terrible timing as the first term of the school year was starting, but there's never a good time to be feeling rubbish so I just had to hope I'd be ok.

A few days in and I was feeling ok, then the onset of the virus type symptoms. By day 5 I couldn't get out of bed and all I wanted was to die. I raged at my daughter's new teacher (terrible first impression) and generally acted like a bear with a sore head, lashing out at anyone who got in my way.

I got pretty desperate and ended up calling my case manager at CMH and asking for a med increase again. Not what I wanted but I just didn't have the strength to deal with all the withdrawal symptoms.

So that was December - February. 

One of the things that struck me over this time is that people generally have a perception that my mental illness is a 'fixable' thing. Over Christmas time I bumped into a number of people I haven't seen for a while, and as you do, you ask each other how you are. Now I never know how to respond to that question at the best of times, because does the person genuinely want to know or is the 'I'm fine' response expected? I usually opt for 'getting there slowly', or 'not great' as they seem slightly more honest than 'I'm fine'. And the comments I get are almost always along the lines of 'But you're better now though aren't you?', 'I thought you'd recovered from your depression, you're back at work', 'you look/sound happy'.

I find this incredibly frustrating though I know it's always meant well. BPD is not something you recover from, and yes I was severely depressed and I have recovered from a major depressive episode but I am still unwell. BPD is a serious mental illness that has a significant risk of death by suicide. 70% of people with BPD will have at least one suicide attempt and about 10% of people with BPD die by suicide (50 times the risk of the general population). I often look well and/or happy because I can be happy. BPD is characterized by emotional instability and pervasive instability in mood, affecting all aspects of my life. My life is a never ending rollercoaster of emotion, where I can be happy one minute and suicidal the next.

I don't blame anyone for not knowing or understanding my condition, I just find it a little frustrating that most of the efforts in awareness campaigns tend to be around depression and anxiety. 

And I guess that brings me back to my reason for sharing some of the things I do. I want people to know what living with BPD is like. I don't think having it makes me a bad person, but I am very sensitive, emotional and impulsive which can lead to chaos in my life and the lives of those around me. More on that another day.

Ka Kite Ano