An update….how much I feel

So…it’s been 1 year and 18 days since I last wrote a blog. I dare not check if I still have any followers left but if you’re reading this thank you for bearing with me.

It’s been a heck of a year. Since last posting I’ve probably had both the lowest point of my illness so far, involving several sections and despair it hurts to even bring back to mind and yet also my most well period so far.

My mind is now a bit of a mess, something I’m trying to be accepting of. But I’m, in all honesty, desperate to express what’s going on for me.

I’m dipping my toe back into the world of spoken word and poetry nervously…terrified my medication really has trampled on my creativity in that area. I’ve been working on my art (shameless plug: check out my art Instagram on the side of this page!) And hey, why not throw blogging in the mix again!?

God, I feel like I sound like such a twat on this.

So where am I at right now then?

My mental health problems are still the centre of my life. One slip and I easily become very unwell again as I’ve learnt the hard way the last few weeks/months. I am frustrated I’m not moving forward at the pace of many I see and am inspired by, on social media particularly. But this said, I do think I see things with much more clarity than I did. Although I still almost constantly hear a voice telling me I should kill myself and hurling insults about ‘what I’m really like’ beneath the facade along with graphic self destructive images, I’m much better at challenging them or at least ignoring them until they quieten. I’m self harming much less. And when I get suicidal I try to ‘put it off’ until the urges lessen. Something that just wasn’t possible before. The pitfall of having had this happening for a while now though is that when I get suicidal I am much more serious and thought through about it because, I suppose it’s like, ‘I’ve given the other alternatives (i.e hospital, medication, therapy, hope, faith, cries for help) a try already.’ I’m trying to work on keeping well rather than just surviving the crises, which includes a tally chart I’ve created for myself per week where I aim to do things like stay hydrated, do art, have chats with supportive people etc a certain amount of times a week. And I have noticed it’s when I don’t keep this up that I get more vulnerable…or perhaps, it’s the other way round I’m not sure.

I feel I’m back properly socialising occasionally and working on my relationships with friends in a more stable way. I’m doing lots of bits and pieces of work and volunteering with various organisations. And being contacted/asked to do different bits and pieces, although frustrated I’m not ready for most of them emotionally despite having the ability to do them practically 😦

My biggest hurdle at the moment is isolation. Face to face I’d rarely admit it in such a raw way (or not cover it with a joke of some sort) but I am really desperately lonely. My close friends have productive lives of some sort or another and none of the work I’ve been doing involves ongoing social relationships or an office I can go into more than half a day a week.

I’ve started seeing a therapist which seems to be messing with my attachments, one minute I’m cool-it’s all ok and the next I’m getting angry telling myself the professionals in my life are not friends or mentors…as sad as that sounds. With friendships or any social situations I worry others are doing it out of charity. With professionals, well, I must be just another one on their case-load but to me I’m frustrated that if I get on with someone  (in any professional capacity not just those actually ‘treating’ me)  and there’s a connection there- I’m a ‘service user’ so that’s that. When I care for someone I really care for them. I hide it all sorts of ways and many wouldn’t know it but my heart is super soft. (My unwell head is killing me for using that term like they are all going to laugh at you, and roll their eyes and point and blablabla- well fuck it, if so this will be a feast for them.) I cringe when I use the term ‘my therapist’…in my head I sound like that american show with rich mums whining about their minor problems on TV… But ah well. I think my therapist is encouraging me not to have such tight restrictions on what I show to people, and I am starting to see how it’s a problem. I’m honest but very very calculated with anyone who’s not in my close close network. And I think the trouble is I fool people as well. I’m praised for being genuine and open and brave for sharing and being transparent and I got caught up believing that was what I was actually being. But honestly, before these past few weeks- if I knew I was starting to get attached to someone, in other words making an honest connection or saying something that would make me seem properly vulnerable, I would run a mile. Not because I was scared of them but because I was scared of me. I’ve seen others I know with BPD who show that side and get needy or cross or insecure ‘on show.’ And the others in their life slowly disappear- it certainly doesn’t get people to trust or take them seriously in a lot of situations. So, I very carefully don’t let it get to that point. If I’m being a burden on friends I’ll remove myself. If I’m imagining  spending time with anyone, like oh we could go do this together or let me look them up on Facebook (this is professionals included) I will do my best not to see them again or if I have to, I will keep myself strictly controlled and basically not say anything unless directly asked. My sexuality was dead. My creativity was floundering and I was feeling stable but stuck and lonely. And now I’m letting go of control or having the reigns tugged out of my hands a bit by recovery, and it’s all mixed up. My sexuality is occasionally hinting its way in- I thought I was straight and now God knows. My friendships, professional/service user relationships and everything-apart-from-family relationships. They’re all over the place in my head. I’m worried I’m falling in love with people one minute and missing people and worrying they’ll abandon me and running from them and not caring much either way all at the same time. All only in my head of course. Obvs! (laugh cry) But occasionally my emotions are leaking out. Like in therapy. Oh my God. So I’m used to strictly structured DBT and this is not it. I’m crying in it! I don’t cry in front of people. I don’t let myself because when I start to cry I don’t stop and I just want to scream and scream and scream. I mean I don’t scream unless I’m really really unwell but it feels like my souls screaming inside of me. But she, my therapist, seems to be pointing toward the fact I probably get that distressed because it’s when the emotions get to bursting point. Like tears letting them out. (Going to try and draw that image now I’ve said it.) Sure the tears are coming out in the sessions but silently and not without as much lip-biting-resistance as possible. Those damn tears- I don’t know whether I’m bring sarcastic with that or not!

She told me she loved me at one point. We were talking about boundaries. Generally, not because I’d done anything to make a discussion needed. And she said boundaries do not mean that she cares any less or likes me any less or loves me any less. Man… that was when I looked up at the ceiling and the elephant tears came a-pouring. I was holding my breath trying not to give in but I’ve never heard a professional say that to me before. Or a friend I don’t think, when in real life rather than a text, or without it being lots of love to you or love you lots or something like that you say to not have to say I love you but whilst still letting them know you care. I’ve never had someone other than my parents I guess look at me-in my eyes, let alone when I’m crying, and say that. And my mind was taking that to all sorts of places, getting tingly in the wrong places- from mother to lover to friend all in the space of a second. But my heart wasn’t. I knew it was her as someone who has been to trained to help me with my head telling me she saw me and she cared deeply. And that is why she does her job. But I was ashamed of my thoughts. I remember asking my mum in my early teens something along the lines of whether teachers taught out of love or Counsellors counselled out of love, friends befriended out of love? I think she hesitated and said something like no, but compassion hopefully. I wasn’t really satisfied with that but I wondered it even more so when I found out how many different words the ancient greeks had for love (where the heck I found that out from I don’t know.) I was going to wing it but I just cheated and looked them up on google to be sure. Eros- is sexual passion, Philia- is deep friendship, ludus- is playful love (between an adult or a child, or laughing/teasing/dancing with friends or flirting of lovers.) Agape- is selfless love/unconditional love for everyone, pragma- is longstanding love (like the work and patience that married couples develop), and Philautia- is self love (they specify between narcissism and a self love that gives you security and increases your capacity to love others.) Here’s the link FYI

Maybe because my emotions are escaping all my loves are being mixed up? I don’t know. That would reassure me rather than just feeling completely messed up and despicable.

All I know is that I feel compassion but it’s love that drives me. And I feel love a lot. And it worries me that others don’t feel that same way back to me or that feeling this way is wrong. I’m a love-er, (I’m trying to make it so that I’m not a lover as that has sexual connotations, although maybe I could be a lover too to someone once I get my head more sorted.)

When I work I want to work where I love any vulnerable people I’m engaging with.

I love my actual friends (not just those people I refer to as friends who are more just people I know.) I really love and care deeply about them in a way I don’t know how to express using any language I know.

I must love others/everyone because when I hear about what’s going on in parts of the world for people it hurts me, sometimes overwhelmingly- it’s a physical sensation, and I get frustrated with my laziness at not doing anything more than ‘giving to charity’ and a bit of volunteering in areas around me.

Relationships/dates wise, anything post puberty drama has been fuelled by insecurity and lust and has ended up at best not a particularly comfortable experience for me and at worst non-consensual violation. But if I were to open up and feel safe to be vulnerable with someone, to love someone in that way, I’d do my best to give them everything and my full commitment. And I could see me making someone feel loved and happy I guess.

As for kids, I don’t see it and at times I have sworn not to curse a kid by passing on part of myself to them but my Mum’s always said to me she thinks I’d be an amazing Mum and maybe that’s because of my capacity to love?

 

So..Maybe I’ll start thinking in terms of these loves because it’s the only thing that normalises my experience for me and doesn’t make me feel like when I’m real I’m too sensitive for this world and when I’m not I’m trapped and mentally unwell. Charity or compassion certainly don’t cut it for me though.

That’s who I am. I feel things deeply. Take it or leave it (ha, now this voice is like leave it referring to killing myself there and its chattering away.) But deep down I feel there is something powerful I could do with that capacity for rawness and I have those ambitions. Really and truly, I must have this crazy strong survival extinct because how else could I have survived having ‘tried to die’ so many times. Or maybe I’m just giddy with this all. I am actually also physically ill right now and dizzy whenever I move so who knows.

I certainly don’t know- those are where my thoughts end right now but any thoughts/comments you have (be gentle with me please!) would be appreciated and thank you if you’ve managed to read to this last sentence of this self obsessed thesis.

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How I’m Supposed to Answer How I’ve Been

I find it really tricky on updating people on how things are going for me- or answering questions like how have things been sincerely because it just always seems like there has been so much, and to such extremes that I either find myself avoiding answering or sort of just saying okay or up and down to get out of answering and then jumping to something quantifiable but meaningless like ‘volunteering is good for me.’

It’s something people close to me will recognise. My family now know the tricks I use with people and sometimes help me move past the question but I still don’t know how to answer it with friends, where I truly want them to know what’s being going on so that I can feel validated and cared for.

I will now give an example of ‘what has been going on with me’- an update if you will and hopefully this will show how hard it would be to summarise.

-On the whole the last few weeks/months my mood has taken a downward turn, I feel low and drained a lot of the time which I thought had been fixed by my new medication so me and my team have decided to up the paroxetine because when I am like this it becomes even easier for me to get pushed over the edge and spiral into emotion dysregulation.

-This has been the case recently- within that lowness there have been times where I have self harmed and become suicidal to the point of getting to a station I planned to jump in front of the train at in London and sitting there with my head in my hands, crying with family texting desperately as I decided the future (or lack of it) of my life.

-There have also been days where I have not been suicidal but I have been so overtaken with depression I have laid in bed the whole day as silent tears trickle down my face and I feel so utterly empty and disgusting inwardly and outwardly. Mental torment such that I cannot describe or recall exactly in between episodes.

-To add to this- I’m on my period which affects me a lot, I had to have a few days of recovery from how hard christmas and new year was, my grandmother has been in hospital and been moved into a care home, my Mum’s autoimmune condition and blood pressure has flared up seriously and my Dad was rushed to A&E due to some faulty test results but he has since been diagnosed with prostrate problems and possibly very slow moving cancer.

-This said, I have also achieved a lot recently.

-Some small things include attending some exercise classes, starting journalling more regularly to track my lifestyle, starting the road to getting confirmed as a Catholic at Easter and asking someone successfully to be my sponsor and becoming a lot more mindful in managing my illness.

-One big thing was doing my first CAMHs Unit peer review with the Royal College of Psychiatrists- travelling to and from Birmingham on my own, staying the night in a hotel and assessing the unit making helpful contributions whilst finding it very triggering and bringing up a lot for me emotionally and trying to manage it.

-My DBT sessions have started their step-down phase after almost a year of intensive treatment as planned, so I stop my group in a few weeks and I have moved to seeing my therapist every two weeks instead of weekly. This is very scary and difficult to manage in itself.

-Finally, I have been getting up to 50 texts and 15 calls a day from a man at a group I go to who has become obsessional with me. Some nights I wake up to find murder sent to me over and over again as he links me to current child murder cases and pedophilia or pretends it is his brother and that he has killed himself because of me, other days I wake up to I love you my darling wife- I have bought you an engagement ring and organised for my mother to meet you. Just to confirm I barely know this man. It got to the point yesterday I had to go to the police with one of the staff from the group and my care coordinator to report it, we stayed while they took various statements for 3 and a half hours, whilst a clearly unwell woman repetitively coming in yelling that the police had abused her and to lock her up in the crown court- clearly very drunk. The CID are now investigating my report as harassment with malicious communication and it is possible it may go to court. I am scared this man might be around where the group is (as he has now been banned) and follow me or that he will harm or kill himself as he has threatened to do and that will be on my conscience for the rest of my life.

So what do I say when someone says Hows it been?

My life is changing so much, I am learning and suffering hugely. Up and down just doesn’t cover it.

You’ve found me

If you’re looking for someone strong

You’ve found me

You’ve found me

If you’re looking for someone who makes a difference 

You’ve found me

You’ve found me

If you’re looking for that creative spark

You’ve found me

You’ve found me

If you’re looking for what’s been missing 

You’ve found me

You’ve found me

If you had looked

You’d have found me

I promise I’ve always been here

I’m you 

You’ve found me

You’ve found me

My Body

I’ve started doing a daily reflection, using a Sacred Space Advent book and Pray to Go podcasts both of which are Jesuit resources I think. These have been helping me enormously. In fact it is hard to express how much so. Taking that time with my Advent candle lit to hang out with myself, reflect, feel whatever I’m feeling and bring that to God does amazing things to my contentment and peace despite the emotional rollercoaster called BPD. I’d go so far as to say it reduces the emotional rollercoaster. The reflections not only give me a greater understanding of my faith and beliefs in general, for example expression of faith through deeds not ‘conversion language’, seeing faith as individual- not to be judged and the solidarity I feel with people of all faiths particularly Muslims in this time of conflict. It also, gives me a greater understanding of me and how I’m feeling  in what arises. They work so well partly because, I am using Jesuit resources and therefore the prayers are not the typical Dear God…please..sorry…thankyou…Amen but a different approach (for those of you in the-know Ignatian Spirituality.) They sometimes include music, almost always a bible passage and then you are just mindful- you imagine, and notice what strikes you if anything,  all non-judgementally. You reflect on it, not separating your ‘human and sinful’ experiences from God but combine them because your life in itslf is a spiritual act and in so the everyday becomes the godly. Thus, you hear how God speaks to you through your thoughts and feelings, you hear what your thoughts and feelings are to begin with.

As a spiritual practice it’s hard to explain so I hope that made a reasonable amount of sense.

The reflection I used today was the Sacred Space resource for Sunday 6th December 2015. I noticed it was hard for me to concentrate on the bible passage and the reflection questions given because I was getting unsettled by the uncertainty I’m becoming aware of about what I believe when it comes to sex. I don’t know what I think about the morality of casual hook-ups, committed relationship sex, sex before marriage. It’s hardly surprising given how my beliefs have changed over the past year- all my values have been sort of reviewed through the processes of doing DBT and RCIA (the course you do to become a Catholic.) I can say i feel much more at peace with them and like I have ownership of my values and beliefs than before as these are ones that when I have questioned myself to the very core, rather than just believing what I’m told, I feel within wise mind (DBT concept) are right. However, ethics regarding sex have slipped through the net I suppose partly because it’s not something that is part of my everyday life at the moment and therefore it comes lower down the list of priorities. Having that uncertainty nags at me though.

There is more to this however. These thoughts badger me quite a lot. I go through periods where they’re in the back of my mind the whole time and frankly I’ve realised recently it’s not about the sex, I’m not that desperate! It’s about my body. Something I feel ashamed and anxious about talking sincerely about.

The reality is I’d like to have sex at the moment (despite my thoughts that it’s probably not a good idea due to how vulnerable I am currently, as well as not being in a committed relationship) because I just want that reassurance that someone who saw my body wouldn’t be disgusted and turn right around the other way. It’s almost nothing to do with the actual sex.

Why is it I look to sex to help my self esteem- because I don’t have any other situation where people see me even half naked. I barely ever even wear short sleeves. I’m covered up, clothed quite literally in shame. I see my body as a triple whammy of repulsiveness- I’m quite seriously overweight due to my meds, diet and not wanting to do exercise because of (you’ve got it) the shame. I have serious stretch marks covering my whole body because of putting on weight very quickly and I have 100s of very obvious self harm scars all over my arms and some on my legs. I don’t know anyone else who has all 3 of these, I’ve never seen a body that looks anything like mine currently does and that understandably leaves me feeling isolated and ashamed.

But here’s where my reflection comes in. One of my core beliefs is that every person is a child of God, precious in his eyes… Huh. So that includes me I guess? I am beautiful in the eyes of God. He sees my heart, my skin, my unshaven pubic hair, my belly, my thoughts and my feelings and thinks Wow how beautiful she is- I’m so glad I created her- she is in the process of transforming herself and this world. No amount of money, or jewels or gold could be worth her, she is priceless and I love her. How amazing.

I’m getting increasingly interested in this idea of body positivity. It promotes healthiness and self-compassion rather than weight and dieting, and self worth whatever your size, skin colour, age etc. (Blogger Grace Victory explains it here ) This is as well as the idea behind naturism (yes those people we all consider weird for wanting to be naked the whole time.) Now I am not a Naturist but the concept behind it is that the human body should be de-sexualised. A naked body is something we all have and need to be able to function and live- why do so many not live their lives to the full then because of it? Surely something that gives us life and unites every single one of us on earth should just be unconditionally accepted? No one goes ugh breathing I don’t like it, hide it away from children, put it away in case others don’t like it. Hate your own breathing. It’s very odd when you think about it.

My body is unusual. My shame however is only increasing because I’m not letting anyone else see it because of that. It’s a cycle and one that is actively decreasing my quality of life. My body is not innately sexual, unacceptable or even ugly. It is functional, unique and something I can work on along with my self esteem.

But I still hope your not disgusted by it.

IMG_1732

P.S Why do I feel unable to say these things out loud? It’s all a learning process I suppose.

Rethink Member’s Day

Yesterday I went up to the Rethink Member’s Day in London. I went with a friend from my Rethink group, having been last year as well. I have to say it was brilliant. Amazing speakers that were really thought-provoking and a member’s workshop which allowed me to say what I’d been wanting to about facing barriers to getting more involved. I made an effort to be assertive and as a result was heard and it felt great that people understood and agreed with my concerns. I also got a chance to meet and chat with Jonny Benjamin who was truly lovely especially considering how many people he probably had to talk to during the day. I was inspired by it all and as a result have re-done my Twitter page to represent where I’m at now rather than something I just use when I’m worse again.

I hope the names & numbers I got from the people I talked to and the advice will help me get somewhere but really this had made me realise in small and subtle steps I’m far further on from how I was a year ago when I went. Plus I think this medication change is really changing things for me in a good way.

Taking Stock of the Positives

Thankyou Rethink!

It’s not me…

(TW: in depth detail of violent behaviour and brief mention of suicidal behaviour)

I’ve been doing much better- my depression has virtually gone since being on Paroxetine and this has made the effects of my BPD mood swings far less crippling.

This said, I thought I’d give you detail on an episode I had yesterday as I can’t talk about it out loud but know it’s good to try and get things you feel so ashamed about out in some way.

Yesterday, I had an emotionally stressful Recovery College course in the morning where I felt I couldn’t say anything and everyone seemed to be talking over each other about things completely irrelevant to the course. Even stigma, anyone in the community knows whenever a person with a mental health problem is given the chance to speak about stigma the vocal floodgates open purely because it’s a daily frustration we all have to face yet something we rarely get a voice to talk about and feel heard. Then I had to go to a meeting for some work I’m doing which meant getting the train for the first time from a station where I got restrained, cuffed and sectioned a few weeks ago and the meeting itself was frustrating, with everyone talking and nothing getting done again. As well as this the guy who runs it snapped at me at the end when I said I needed to leave to get to a GP appointment even though the very fact I came to the meeting was a favour. I got back to the station where my Mum was meant to pick me up at half past the hour in time for me to get to my GP appt at 6 so I could get to the pharmacy I needed to get my prescription for that day by 7. My Mum texted at 24 past whilst I was sitting outside the station in the rain saying just get the bus- I tried to call twice got no answer and only got to me after me calling my sister much later. By that point I had gotten so incredibly worked up I flipped.

I got in the car and started hitting her and the windows until she had to stop the car. When I have an episode I tend to flip between violent and self-destructive. She was holding my by one wrist as I was trying to get out the car to go to the station and jump whilst with the other arm I was attacking her. I shouted threats, tried snapping her phone. Telling her I hated her and I would smash the window and use the glass to stab her over and over as I acted it out. I was completely out of control…completely…not me… I told her I would cut her up and eat her flesh. (As I typed that my head physically turned away from the screen in disgust) I said that I knew the car was being bugged by the police, I told her to drive the car and crash so that we would be number two and three dead (her brother died young in a tragic and horrific car crash.) I’m sure you get the picture now- my muscles were spasming, I was all clenched up screaming and clawing at my face.

The day after one of these meltdowns (this one was not even that bad compared to most of my others especially those a year ago) I always feel very low you can imagine why. As I get back into reality, back to being me I can only feel disgusted, ashamed and incredibly saddened that an illness, and myself could make me behave like this and get to the point where only being sedated can help me. I am left to question how I could be capable of this? How such statements could be formed and phrased so maliciously from knowledge I have in the back of my mind.

Ugh.

I disgust myself.

A strategy I use for coping with psychosis

Reflecting on it, I have realised when I get psychotic it tends to originate from a single phrase or image roaring round my mind and becoming an obsession that makes me start to see the world differently.

A phrase my brain makes up or comes across, that is usually quite poetic, that makes me feel I’m either receiving a special message from some bigger force or that I am some genius who can see the true nature of all things in a special clarity and creativity.

The more I have become aware of this the more I have avoided the symbols or topics that trigger me towards getting like this but actually I’ve realised I also use another coping strategy. Drawing them out. How I see them. In complex patterns, how in the moment I see the world. Here are some examples of close up inclusions of these phrases in drawings. Once I get them on paper I’ve done something with them and it seems to stop it from circling round my mind and leading to psychosis. This is a very important strategy for me.

image Only a Mustard Seed of Faith

image Do not Fear for I am with You

image Chemicals Spread like Tentative Tentacles

image Die down the Spirit is High, Is love Best? Plenty a Day are Heralded

image  Son of the Devil Cousin of the Colonel

image They’re watching you, surrounding you, stalking you/ A mad mind is busy with eyes/ SCREAMimage I paint the Ceiling and the Walls, They’re filled with the lines of my unconscious