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Archive for the ‘mental illness’ Category

Oh I’m Sorry, Did We Take That Too Far?

Posted in activist, bipolar, blogging, Celebrity Mentalism, communication, DID, Dissociative Identity Disorder, hospital, illness, insight, Internal Communication, mental illness, Multiple Personality Disorder, NHS, politics, therapy, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , , , , on July 24, 2012 | 44 Comments »

Last night the world, or at least my tiny view of it from behind the laptop screen was talking about the 4 Goes Mad season, specifically Ruby Wax’s Mad Confessions- hosted by the self-dubbed “poster girl for mental health” (or “poster girl for mental illness” according to her twitter bio), Ruby Wax.

I didn’t watch it, the TV is still broken and it’s still too difficult for me to contemplate having someone come into the house to fix it. I ‘watched’ Ruby Wax’s Mad Confessions on twitter, the same way I have ‘watched’ TV for some time.

Obviously this show wasn’t going to represent me, I knew that. I also knew that as it championed celebrity mentalism which I have talked about before here, I probably wasn’t going to like it. I’d read a bit about the show, watched Ruby’s interview on BBC Breakfast, watched some coverage from the 4 goes mad launch night and read some comments from Ruby in an article in the Independent- I didn’t like any of them.

I have nothing personal against Ruby Wax, I don’t know her and generally I applaud anyone who tries to battle the stigma surrounding mental illness but as I’ve said before, I don’t think celebrities are the right people to do this. I could take umbrage with her investment in the medical model but I can’t really be bothered. I could point out that she’s no longer bipolar and none of you seemed to notice- but I can’t be bothered. I could point out that Ruby has never spent time in the hideous pit of shitness that is an NHS acute psychiatric ward- but I can’t be bothered. I could point out that Ruby has never had to wait months, maybe years for the correct treatment- but I can’t be bothered. I could point out that Ruby has never been unnecessarily over-medicated- but I can’t be bothered. I could point out that Ruby has never had to apply for a mortgage payment holiday (long since expired) from her bed on a psych ward- but I can’t be bothered. I could point out that despite ‘confessing’ to being mentally ill, Ruby still has a job, in fact- extra jobs- but I can’t be bothered.

So last night turned out, as expected to be a rage-fest for me, not pretty but I had every right to be angry. I was angry at the content of the show and could sit here for weeks picking through all the bits that pissed me off. I’m not going to; I can’t be bothered. Ruby Wax’s Mad Confessions left me feeling more worthless, patronised and misunderstood than I have felt for a very long time.

What last night confirmed for me is a suspicion I’ve held for a while.

As I watched the reactions to Mad Confessions roll-in and watched some fellow mentalists and all the mental health organisations swooning over the ‘honesty’ and ‘bravery’ of the host and those featured, crowing about how this time, this time someone was really challenging stigma. This was it- she was going to be the one, Ruby Wax was our saviour. I felt an increasing distance from some members of my adopted community. It’s not just my rampant hatred of celebrity mentals that created this distance, it was more.

As I trawl around the madosphere reading blogs, tweets, articles, campaigns and press releases I’m frequently smacked in the face by

RECOVERY

I don’t like the word recovery and as a concept in its broadly accepted form it is meaningless to me. I’m not going to recover, DID is for life, if you meet me in ten years time I will still have DID, sure I’m hoping that there’ll be a lot less disorder by then but I will still be several different people in one body. This makes me unacceptable to many of you. This makes me unacceptable to society and mental health organisations. I’m not alone, this is not a situation unique to those of us with DID- though that’s my drum and I will continue to bang it. There are many mental illnesses from which people will never recover to an acceptable degree; some of us will be mental forever. I’m not some petulant recovery refusnik and I’m not playing “my mental is worse than your mental” (though if you want to fight about it I’d give you a good run for your money) but I think I have found one of the reasons I may feel that difference I talked about in a previous post.

I’m not striving for recovery. On a good day I’m living, the rest of the time I exist, I just keep on keeping on. Yes I’m in therapy and yes I work hard but I work hard to achieve a level of communication and cooperation with those who share my mind, life and body, I’m not working hard to get rid of them. This is not because I have some sort on ‘investment in illness’ or a desire to stay ‘stuck in the sick role’ this is because I am accepting of my condition and what it means for me.

When I briefly and reluctantly accepted I was bipolar (I still never believed it) I was applauded, acceptance is a big deal in mental health- after all it’s the first step to recovery. Now that I have fully accepted I have DID and also fully accepted that I’m not going to recover in a way that looks like recovery to others, I’m shunned. I’m treated like I have decided that no matter what I’m going to stay determinedly mental- forever. I go against the grain, I talk freely and openly here and elsewhere about my experiences with mental illness but there is something distasteful for some of you that I talk about working with it and not working to get past it. I’m not waiting for my meds to reach the right level, I’m not practising mindfulness techniques, I’m not going back to work, I’m not finding new hobbies to ‘distract’. I just am.

I’m letting the side down by not joining the cult of recovery, I’m not shouting from the rooftops “I WILL BEAT THIS!” I’m not laying a virtual trail of M&Ms to try and coax other mentals into doing what I do, into joining me on a righteous path of recovery and return to normality. I tell it like it is, I tell my story.

I’m not writing myself off, far from it. I have the potential to be awesome and I know it- but I will be awesome and mental. But I know that for some, I have gone too mental, taken it too far.

I’m not sorry.

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Personalisation(s) Of Services

Posted in communication, diagnosis, DID, Dissociation, Dissociative Identity Disorder, Fife, friends, insight, Internal Communication, laptop, mental illness, money, MPD, Multiple Personality Disorder, NHS, Nicola Sturgeon, parenting, Paris, single-parent, social worker, support, The Smallest House in The World, Told you it wasn't like Stephen Fucking Fry, Triggers, Twitter, tagged , , , , , , , , on July 22, 2012 | 7 Comments »

To quote from the Mind page on personalisation and to save me launching into a lengthy explanation of what it’s all about- The Government wants more people who use support services to have ‘choice and control’ in their lives. That is why they have introduced direct payments. I’ll leave the debate about Government, what it actually wants, what this means for mentalists in general to others.

I mentioned in a previous post that I had applied for an assessment of my needs from the local authority in order that I could apply for direct payments. This assessment is on Wednesday the 25th of July. This is not about me having more ‘choice and control’ this is about me actually getting some sort of service. Currently I’m deemed ‘too complex’ for exisiting services, indeed the reason it’s taken so long for a social worker to arrange to do the assessment is because I am ‘so complex’. Whilst I’m relieved that this isn’t because the social worker was too scared to come back after being met with the simmering ball of frustration and hatred I was last time which, in my defence I only was because NHS Fife were still refusing to recognise, diagnose and treat my illness and the last thing I wanted or needed was someone to help with the shopping, I need to say something about my perceived ‘complexity’.

DID is complex, I am not complex, I’m actually very straightforward, all you have to do is listen to me. If you look at me as a disorder then I’ve no doubt what you see can be quite challenging but what anyone tends to be met with is an individual, sure sometimes things go awry and you can be met with several individuals but all you have to do is listen to what they say. My ‘complexity’ is used as a stick to beat me and a reason to treat me differently, it creates barriers. Instead of all those referral letters that begin “Zoë is a very complex….” How about “Zoë is a lovely…..” or “Zoë is a very funny….” or “Congratulations, now you too can experience, first-hand the sheer awesomeness that is Zoë….” Unless perhaps it’s a referral to social services in which case and in the interests of honesty and transparency the letter should probably begin “I’m sorry, Zoë will probably despise you by virtue of your chosen profession, it’s nothing personal as I’m sure you’re lovely but she’s had some very bad experiences with your kind….”

So I’ve been thinking a lot about what my needs are, what kind of things would be helpful, would make life easier. It’s very tricky as I struggle to ask for or accept help, I feel undeserving of help and a lot of the time would deny I needed any. Coping is what we do best, those who have DID or know about DID will know that the perceived level of coping is actually inversely proportional to the mental health of the individual and I know, personally that ‘coping’ is one of my biggest danger-signs and is usually a precursor to crisis. I’m keen to avoid coping so I know I need some things in place to help make things easier, especially as I am soon to return to caring for two children full-time again.

I’ve considered the obvious things, practical support- help with housework and shopping- and ruled them out. Having to deal with people is problematic; bringing a person into my life introduces a whole new set of challenges. In a moment of insight the other night, whilst sitting in my local Chinese takeaway I figured out one of the main reasons people are so triggering, I briefly felt like a genius until I realised that reason was ‘because they move’ I then felt like a persuasive case for euthanasia. At the moment I simply couldn’t stand having someone come into the house to ‘help’ with anything, I’d be constantly on my guard to protect myself and besides they’d have had a quick run-down on DID, and they’d be waiting for me to “do a Sybil”. I’ve never read or watched Sybil so my frame of reference is lacking in detail but I know enough about it to know that for the most part, it’s a very poor portrayal of DID.

I’ve tried to look at my average day to get an idea about what my needs are, I don’t have average days. The only constant running through my days is that they will be fragmented, random and involve some chaos. Today for example involved an early-morning excursion to Tesco for milk. The trip to Tesco was derailed slightly as the store I usually go to and have well-mapped had had a slight re-modelling. I only know this as there is a ‘distress tweet’ from around 6.30am saying this, I’m very sensitive to changes in my surroundings so it may be that Tesco is much the same as it was last time, they may just have adjusted an onion or something. So I came home from Tesco with all the essentials- milk, bread, cat food and three boxes of Fuzzy-Felts (dinosaurs, under the sea and pirates for anyone interested). So I suppose I could argue that having someone to do the shopping would be helpful- but then how would I get Fuzzy-Felts?

You see my needs are unique and whilst I’m sure one box would have sufficed I can argue that Fuzzy-Felts, particularly the dinosaur ones are an essential part of my care. Similarly I could argue that I should be given black Converse free on prescription. Confusion is a major feature of DID, black Converse are the ultimate, dynamic, age-appropriate footwear- they are shoes for everyone. In situations where it’s likely switching can be rapid and chaotic, making sure everyone is wearing shoes that make them feel safe is essential. I could also make a good case for being given stationery on prescription. Post-its are an essential part of my selves-management; notes to selves are a mainstay of internal communication. The “whiteboard of madness” which hangs on the bedroom wall is crucial in ensuring that the days hang together in some way, important things don’t get forgotten and needs, wants, fears and desires can be communicated. So I could add whiteboard markers to that prescription. Some internal communication is done through drawing so colouring pencils, felt-tips, crayons and paper are also much-needed items. Now that I’m no longer unnecessarily drugged into a nice easy to-manage zombie-like state and have freed up 70% of NHS Fife’s budget by becoming a free-range mentalist, I’m considering approaching the GP with my prescription requests. After all 99% of the time I would claim not to exist in a physical sense, have no body and therefore never experience physical illness so I’m hardly a huge burden as patients go. This may or may not be related to the fact that the GP is still on the long list of “THINGS THAT ARE WAY TOO TRIGGERING”.

I’ve thought about my ‘social needs’ I do have them but again I’m constrained by my current, somewhat fragile state. I adore people but I fear them too and so, my social needs are best met in a virtual way and this suits me. In fact I suspect I spend more time with friends than most as I can do it in a way that’s comfortable, controlled and safe for me. So I could ask for help to pay for my broadband service? I can justify this request if necessary but I can’t see the local authority understanding. Similarly I could make a good case for having my mobile phone contract costs met by the local authority. The phone is essential in helping me keep track, avoiding confusion. Whether this be a photograph of a person/situation/place that later helps remind me where I’ve been, what’s happened and who with or a tweet that discloses my mood or location or a text to a friend to let them know I’ve been attacked by the ‘silencing mentals’ and not to worry as I’ll eventually be back,  the phone helps me communicate and more importantly, communicate in a way that leaves a written record so that it can be accessed again later. Since the Paris trip I’ve also undergone a comprehensive self-led training course in Google maps and navigation so having the phone with me is an extra guard against getting lost.

I’ve considered my recreational needs; I do have some as I have multiple hobbies. I enjoy the very occasional film though am still limited to watching films I’ve seen before and therefore have a fair idea of the potential triggers and can guard against them, those of you who know me elsewhere may remember the harrowing emotional rollercoaster that was my first and last viewing of Disney’s Up, I remain in two minds about balloons to this day they bring me right back to that film. I have a small team of film reviewers on twitter who have a good understanding of my needs but sadly, we’re still at the stage where the conclusion is usually “it was good but not for you yet” so I can’t go to the cinema and I don’t really need DVDs (DID and films/TV is another one of those book topics I mentioned in a previous post). I adore music, my tastes are ‘eclectic’ music is essential and again, DID and music is a potential book topic. I could argue that there is a need for my music supply costs to be met by the local authority but as I ‘purchase’ all my music from isoHunt I suspect I’d be fighting a losing battle.

So I’m a little stuck, I know I need something but I don’t know what that something is. On paper I’m an ideal candidate for self-directed care, I’m intelligent (another attribute used as a stick to beat me, MH services prefer their mentals to be stupid) I’m articulate, have a good understanding of my condition and am keen to make progress but in practise trying to define the support I need is just another cause of confusion for me and another thing that makes me feel different.

The other problem I have is that I am more than capable of doing everything myself. I have no doubt that eventually after a few weeks, maybe months this would cause complete de-stabilisation and a spiral into crisis but I can do it, I can do it all. I’m trying to convince myselves that just because we can do it, doesn’t mean we should or that we have to. It’s not easy. Self-sufficiency can be a very good thing but can also be incredibly self-defeating when it becomes more about control, lack of trust, fear and keeping everyone away than confidence, empowerment and choices.

So I’m still none the wiser as to what I should be asking this social worker for, I intend to give the matter my full attention over the next few day, in between playing with my new Fuzzy-Felts.

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Same Difference

Posted in Anxiety, depression, DID, Dissociative Identity Disorder, Eating Disorder, emotions, insight, insomnia, Internal Communication, labels, manic, mental illness, MPD, Multiple Personality Disorder, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, Uncategorized, tagged , , , , , on July 18, 2012 | 22 Comments »

I don’t fit, or at least if I do, I don’t know where. This feeling is nothing new to me; I’ve never fitted, always felt different. I suppose I should be grateful that at least now I know why?

I didn’t think I had a problem with being different, in fact I’m still not sure I do after all I can’t imagine I’d enjoy being normal. Just a quick reminder to anyone even thinking of saying or even just thinking “oh but what is normal anyway?” I don’t know, but I know what it isn’t. That question rates even higher up the irritation scale than any of the wanky platitudes, don’t do it.

When I went mental, I started to feel a bit like I wasn’t different anymore; I was the same as all the other mentals. But that’s just it, I am the same

as

all

the

other

mentals….

I have a lot in common with the depressed, the manic, the obsessive compulsives, the voice hearers, the eating disordered, the self-harmers, the suicidal, the psychotic, the delusional, the gender confused, the insomniacs, the narcissists, the anxious, the attachment disordered, the selective mutes, the substance abusers, the paranoid- I could go on…..

I can identify with everyone; I’ve been there, am often there and will no doubt be there again at some point. I suppose if we’re looking at transferable skills at least I can rest easy, safe in the knowledge that I have a promising future career in writing leaflets about mental illness?

I left a comment on a blog last week; it took me some 4 days of writing and deleting to actually click ‘submit’. My comment wasn’t anything controversial or even particularly interesting or important but it was different. The topic of the blog piece was labels- what we mentals call ourselves and are called by services. I’m a firm believer in self-definition but of course, for me this means selves-definition. My comment reflected this

I cut the comment short, I define myself in numerous different ways but I was feeling incredibly self-conscious about what I’d said.

So I feel different from other people like me, other mentals

I don’t fully understand why I felt so self-conscious, I’m not ashamed of having DID, I’m happy to talk about it. You may have noticed.

I feel like I ought to say “my illness doesn’t define me” but it’s simply not true. When your illness makes you believe you are more than one “me” it does tend to dictate how you operate.

I’ve felt uncomfortable within the Madosphere for a while, I don’t read many blogs at the moment and I comment on very few. Whilst I have something in common with everyone and can offer advice, sympathy and understanding in all and any situation, I shy away from doing so. I don’t feel unwelcome, far from it but I do feel very different and quite alone. The ultimate paradox of sharing your head/body/life with [number I will never reveal] people is that it can be incredibly lonely.

I know there are several people out there with DID, I read some of their blogs; I don’t even feel like I fit there. Why? What makes me so special? What makes me think I’m different from all the other multiples out there?

On paper, nothing. Whilst all multiples are unique, there’s a sameness about us too, we share similar experiences and face similar struggles. There are a few tangible things I can point to that make me feel out of place within the online DID community.

Other DID bloggers use different terminology to me, I can’t discuss this further as it’s triggering, therefore other DID blogs can be triggering for me. So I’m like the meanie of the madosphere, I have no blogroll and generally don’t follow blogs. I have some in my reader as then I can carefully choose when to read them. I tend to avoid using terminology at all, I slip in the odd technical description but my story-telling approach to blogging often doesn’t call for it.

Other DID bloggers share names, I nearly fled Starbucks in terror last time I went and they asked for a name to put on my drink (why do they do that?!). I can’t work out if my reluctance to share names is symptomatic of the denial that we had any for so long or indicative of my overall secretiveness. I’m happy, for the most part to hide behind the collective noun, it feels safer that way.

Other DID bloggers share system information, I am like the MI5 of the multiple world when it comes to sharing information. I think it would make me feel incredibly vulnerable and unsafe to detail parts of my system.

Other DID bloggers talk about therapy; I allude to it but can never imagine retelling a session. I’m not ashamed about what happens in session, I often don’t know and am in no doubt that it’s always overtly mental but I think that therapy is for me, whoever I may be on the day and the <?> therapist.

Other DID bloggers talk about trauma. I have no trauma. I know that’s the typical multiple response but I genuinely have no memory of trauma. Sure my childhood was less than perfect and I can remember a lot of the less than perfect bits- which suggests they don’t count as trauma, but more unhelpful additions to a psyche that was already teetering. I can’t imagine if I ever uncover any trauma *clings to denial* I’d want to share it outwith therapy though.

So I feel different from other people like me, other people with DID

I’ve done the sums and if I’ve correctly identified ANPs (apparently normal parts) and EPs (emotional parts) I am 63% normal or apparently normal anyway. So the majority of the time, I’m technically, apparently normal. Twenty minutes in a room with me however and it becomes glaringly obvious that in spite of the mathematical evidence, I’m not normal. In fact, you don’t even need to be in the same room as me, anyone who’s ever received an email from me will know that bits of apparent normality do not compound into something totally normal, indeed it has the rather opposite effect. Those of you who’ve been lucky enough to receive hand-written correspondence from me (always unsigned but you can tell it’s from me as you recognise the handwritings) will appreciate that whilst there’s no doubt I can be normal and often am, all the normal together or even just a few of the normals together at the same time makes something completely abnormal.

So I feel different from other people like me, normal people

I think I feel different because I feel different and have always felt different. It’s causing me some angst it’s fair to say, especially as I think I’d be equally angst ridden to find out I was just the same as everyone else.

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InequaliTy

Posted in activist, Anxiety, bipolar, depression, diagnosis, DID, Dissociation, driving, hospital, illness, insight, Internal Communication, mania, mental illness, MPD, Multiple Personality Disorder, NHS, parenting, politics, Triggers, tagged , , , , , , , , , , on June 27, 2012 | 25 Comments »

Today is bipolar awareness day, happy bipolar awareness day, may your day be filled with stability or shoe-purchasing, hilarious mania. I observed the day last year, when I was still officially the least convincing bipolar people in the world. I observed it with my usual mix of sadness, outrage, activism and piss-taking in 140 characters or fewer.

There are lots of awareness days, some kinds of mental even have a week (OCD) and some a whole month in which to be aware (Depression).

There is no DID awareness day

I’m not surprised- after all how on earth could we ever decide when to hold it? As a fellow multiple pointed out this morning we probably couldn’t even decide whether to hold it in the present or the past. Then we’d have to factor in those who remain in denial that they have DID, those who are too ashamed to admit it, those who would rather buy crayons, those who would ponder if it would be the perfect day for suicide and those who never know what day it is anyway. The chances of us agreeing on which colour the DID awareness ribbon should be are slim to none. I’ve taken to wearing these on my jackets, I assume the world thinks I’m gay, I know I’m a multiple.

We could just ‘celebrate’ all the awareness days/weeks/months for all our various comorbidities, for most multiples, every day could be an awareness day. Just think of all the cards and presents!

Joking aside, this is indicative of something far deeper, something I’ve been tentative to address, mainly as I’ve been to busy licking my (metaphorical) wounds and mourning the loss of my career.

Dissociative Identity Disorder, DID is many things but primarily it is a mental illness. I can’t decide if DID doesn’t fit the traditional ‘illness model’ or if the traditional illness model doesn’t fit DID, it doesn’t matter- the results are the same.

I am quite clearly as mad as a box of frogs; in short I believe I have several other people living inside my head/body, these other people all behave, think, act, dress and talk differently. Whilst there’s never a dull moment with DID my functioning is severely impaired, my quality of life impaired, my future affected, the lives of my children are affected, my income is affected- there is nothing DID, nothing the mental illness I suffer from doesn’t touch.

I can’t tell you the last time I saw a psychiatrist, this is not due to my usual problems with memory, this is because ‘my’ psychiatrist doesn’t want to see me. Don’t get me wrong, I can think of several people I’d much rather spend those precious 8 minutes every couple of months with (in fact, anybody) but why do I not see a psychiatrist? Am I cured? Am I no longer mental?

No and clearly- no.

I don’t see a psychiatrist because my psychiatrist doesn’t know what to do with me. There is no drug treatment for DID so I can’t be drugged into a nice, easy to manage state. Seeing the psychiatrist is such a triggering event that we invariably send our sanest part to consultations, she’s lovely but formidable and never shies away from pointing out flaws in professionalism; in fact I suspect the psychiatrist may still be recovering from the last consultation.

I have no care plan; never have; I’m not even sure what one is. Is this because I have no care needs?

No.

I have no care plan because current provision cannot meet my needs; I fit the criteria for a CPA but don’t have one. For too long I have accepted the blame for this having been told by many mental health professionals I’m “different” or “complex” and my favourite “challenging”. I don’t doubt for a second I am all those things and more- they are all symptoms of my illness.

This discrimination is nothing new to me. Sometime last year, during the perpetual crisis season I was visited by the Fantastic CPN, she was so concerned about the (frankly atrocious) state of my mental health the GP was asked to visit- the GP was equally concerned and they tried to persuade me to attend a mental health assessment- I refused. Mental health assessments are not something one can refuse as the answer to refusal is that you are clearly so mental you need get one anyway.

The psychiatrist did not bother to assess me as there was “nowhere suitable to put me” this was at the time my correct diagnosis was accepted but not allowed to be spoken of as I hadn’t had the official stamp on my notes. Don’t get me wrong, I’m relieved I escaped yet more time in the horrendous pit of shitness that is the local acute ward but that day, a Friday I was considered to be a danger to myself, a danger to my children and I was left, alone, all weekend. The children were removed from my care and placed with their father; I’ve yet to get one of them back.

I struggle to label myself as a “trauma survivor” that’s kind of symptomatic of DID, particularly at this early stage in treatment. I’ve done the ‘backwards calculations’ though and as painful and difficult it is for me, I know I didn’t end up where I am today because I was a slightly miserable kid. In fact I like to think I was a veritable ray of sunshine who left a trail of happiness and rainbows in her wake.

I am a trauma survivor.

I suffer from all the same problems as other trauma survivors do- multiplied. From the little things to the big things- multiplied. I have PTSD- multiplied.

I haven’t survived the trauma of combat, just my life. There are a number of national PTSD organisations and charities in existence to help those traumatised by war and I salute their efforts. Had I survived war then I would be able to approach one of those organisations for support, guidance and maybe even some financial assistance. The first and best advice I got when I began treatment for DID was to get rid of anything in the house that was triggering, to make the home environment safe. How I wish I’d been told this before I became too ill to accept the new 5 year contract I was offered in May 2011. The back garden of the smallest house in the world terrifies me, I can’t go out there- all it needs is a 6 foot fence around the perimeter to make it ‘safe’, I can’t afford a fence, I miss the garden.

I recently replaced some cushion covers as the existing ones were triggering, I am now able to spend 6 minutes in my own living room before I scuttle back to the safety of the bedroom, 6 minutes is crap but it’s an improvement on my previous record of 4.

Then there’s  the stupid car, I had hoped “being too terrified to go over your own front door” would be enough to qualify for the higher rate of the mobility component of DLA so I could make use of the Motability scheme but alas as I have two legs this is not the case. The fact those legs often don’t move (freezing is a very common trauma response) or those legs are often very painful (somatic memory) is insignificant to the DWP. I need the stupid car to retain that tiny bit of independence I have, the stupid car, for all its failings is safe.

I am working hard in therapy and have made huge progress, I am a very active participant(s) in my own ‘recovery’ (a word I despise in this context but I can’t think of a suitable replacement) and with the right package of care I could be doing even better. I’m not a fool, I know my journey is going to be long and at times very difficult but it’s a journey I’m willing to travel. I know what my needs are, I am aware they don’t fit with the traditional needs of someone with a mental illness but they are needs that I have as a direct result of my illness/disability, I intend to apply for Direct Payments to meet my needs. I have no doubt I face an enormous challenge but I am determined. I have been NHS Fife’s ‘dirty little secret’ for too long, I’m not a bad person, I have a mental illness. I asked for a social worker to assess my needs on the 12th of June, I suspect they’re still drawing straws in the office, if it’s any consolation I have no desire to deal with any of them either- but needs must.

There are two survivor-lead organisations for those with DID, First Person Plural and PODS but they are small, under-funded and generally unnoticed. I hope one day to have the strength and stability to help move DID out of the shadows. Not because I think we’re special but because we trauma survivors deserve the same services and same recognition as everybody else with a chronic mental illness.

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Helping The Help

Posted in #MadParisJolly2011, art, Awesome Psychiatrist, bipolar, blogging, communication, crying, depression, diagnosis, DID, Dissociation, DSM, emotions, Fab Psychologist, health, hospital, insight, Internal Communication, labels, Lovely GP, manic, medication, mental illness, MPD, Multiple Personality Disorder, NHS, psychiatrist, stickers, suicide, The Fear, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , , , , , on May 25, 2012 | 23 Comments »

Two years ago today I wrote this blog post

Ever wish you hadn’t asked?

Some time last year that post was edited and the link within changed- the link was originally to the Wikipedia entry on DID (which incidentally I think is rubbish). I know why it was changed and for the purposes of this post it doesn’t really matter. What does matter is that for two years I’ve known I had DID, the nature of DID means that I didn’t always know I had it and often didn’t think I had it- but I do and I’ve known for a very long time.

This post is dedicated to all the psychiatrists, psychologists, nurses & doctors (and there have been many) that have met me and treated me in those two years; I know many of them read the blog (though strangely they never leave comments). Even if you’ve never had the privilege of being involved in my ‘care’ if your profession brings you into contact with human beings, you may learn something too so please read on.

I can’t believe you all missed it, it was hardly subtle and I did, very kindly point it out on a number of occassions. You all need to learn about dissociation and dissociative disorders, you all need to find the courage, humility and confidence to do what’s right for those in your care. If you don’t know what you’re doing- admit it and find someone else who does. Listen to your patients, accept what is true for them, however distasteful, frightening and anxiety provoking it is for you. Put your egos to one side; ignore the flawed politics of the system you represent, stop damaging people who have been damaged enough, admit you got it wrong. If your manager/colleagues/profession are unsupportive- call them out on it, stand-up for yourselves, stand-up for your patients.

It’s too late for me, the damage caused by your mistakes is huge- but there will be others and you owe it to them, to your profession and to yourselves to ensure you don’t do to them what you did to me.

Don’t make anyone else have to fight the way I had to fight to get the correct diagnosis, care and treatment- for that fight was very damaging. Don’t assume that you know more than your patients, for all your qualifications it is the person sitting opposite you who is the expert on their own mind. Listen, believe and accept, if you can’t or won’t, have the decency to find someone who can and will. I hope every one of you has learned something from me and I hope some of you will go on to learn more in order that you can do your job and do it well.

You hold peoples lives in your hands, you have great power- but always remember what Spiderman said……. or Voltaire if that’s your bag, he said it too but Spiderman says it better.

A multiple never forgets

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Something About Nothing And Sticky Butterflies

Posted in Butterflies, communication, DID, emotions, insight, Internal Communication, mental illness, MPD, Multiple Personality Disorder, therapist, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged , , , , on May 5, 2012 | 12 Comments »

I am stuck

Being the paradoxical kind of girl I am my ‘stuckness’ is dynamic and fluid. It’s an ever-changing stuckness, a stuckness that shifts and moves. Much like everything else- it is confusing and chaotic. Confusion and chaos remain the only two constants in my dynamic, stalled, paradoxical existence.

I am the personification(s?) of the butterfly effect, I contain many butterflies and every one of those butterflies contains their own butterflies. I’m not particularly large as containers go so there are just too many butterflies to cope with.

I somehow have to manage all these butterflies whilst leading some sort of life, doing the things I need to do, do the things others need me to do. I feel completely defeated.

I’m assured by the <something> therapist that internal communication is the key to butterfly taming and I don’t doubt she’s right. The problem with internal communication is that it forces you to consider there may be something internal to communicate with.

I know there is, I know there are several ‘somethings’ to communicate with, not all the somethings agree, some of the somethings don’t know they’re there, some of them are there but hiding, some of the somethings are deliberately hidden by other somethings, many of the somethings have no desire to communicate with anyone- including other somethings.

All of the somethings have their own ‘things’, things to think about, things to do, things to say, things to worry about, things to feel sad about, things to feel happy about.

Too many somethings. Too many things. Too many butterflies.

A butterfly jigsaw-possibly the best visual metaphor ever.

In amongst all the somethings there is a ‘nothing‘.

The nothing doesn’t want to know about the somethings, the nothing doesn’t understand why the somethings are all somethings whilst the nothing is nothing. The nothing cannot accept the somethings. The nothing wants all the somethings to go away and take all their things and butterflies with them.

The nothing cannot see that the nothing is something.

The nothing cannot see that the nothing is in fact all the somethings.

Between something and nothing there is an impasse.

I’m stuck with something, nothing and no lepidoptery skills.

I’d love for the stuckness to be as expected- stuck, stopped, I’d even settle for a pause. Mentalism is relentless, life is relentless, I somehow have to combine the two, I honestly don’t know how. The only factor of the stuckness that’s true to its etymology is that I feel trapped- in a trap that contains butterflies. A trap that releases butterflies. A trap that is a butterfly.

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Mental For Five Minutes

Posted in activist, benefits, blogging, Celebrity Mentalism, DID, mental illness, NHS, Told you it wasn't like Stephen Fucking Fry, Twitter, tagged , , , , on April 24, 2012 | 56 Comments »

This has been swirling around in my head for years, so far I’ve kept it to rants on twitter in 140 characters or fewer but it deserves more words.

Today’s twitter rant actually leapt over the line from ‘rant’ to ‘just plain old abuse’ I don’t care-


It was a long time coming.

To quote, from the Rethink article

“We wish her all the best in getting through this difficult time and commend her for her continued honesty when it comes to talking about mental health.

 When celebrities speak frankly about mental illness they go a long way in helping to break down the stigma that still surrounds it.”

It’s a commonly held misconception with MH organisations that celebrity mentalism does anything at all to break down stigma. I’ve had this conversation calmly with Rethink and others in the past; I’ve also tried to get Rethink to make reference to dissociative disorders and DID on their website, they gave me some lame excuse about not having information available, I told them where they could get information, I offered to write information they still haven’t done anything about it.

That is stigma

Being afflicted by the MH equivalent of leprosy I am all too familiar with stigma, most of it comes from the NHS but the fact that MH organisations such as Rethink and SAMH refuse to make any reference to dissociative disorders or DID does nothing but compound the idea that it is the illness that must not be spoken of.

I am eternally grateful to Mind for their leaflet on dissociative disorders, it’s a great place to start for information, my only complaint is that they even address the ‘does DID exist’ issue (see ‘other theories’), to be fair they handle it very well but until mainstream literature stops even considering whether DID ‘exists’ or not, people will continue to question it.

So my rant at Rethink today has a bit of a history but my original point and one I have made many times is that celebrities ‘confessing’ to having mental illness does nothing other than provide a bit of a news flurry, an opportunity for the media to tie themselves up in knots about semantics and a few interviews, maybe a book deal for the celebrity in question.

Celebrity experience of mental illness never reflects the day-to-day reality for those of us living with a mental illness. I accept that the way celebrity and the media work are probably to blame for this but we cannot challenge stigma with

Has breakdown- goes to Thailand- is all better now.

Or

Has breakdown- keeps job- writes books- gets more jobs- is all better now.

Or

‘Catches’ bipolar- goes to clinic for 4 days- drinks smoothies- makes film- is all better now.

Or

Has breakdown- goes to Priory- enhances career with a touch of mentalism- gets more jobs- is all better now.

Etc.

My frustration is both personal and on the behalf of the many people I have come to know and love who are struggling with mental illness. All of these people have ‘bravery’ and ‘honesty’ in bucketloads- and the MH organisations follow most of them on twitter so see their stories unfolding every day. Day-to-day existence with a mental illness is grim, protracted and painful. Mental illness is pervasive; it destroys lives and steals futures. For most of us getting any care and treatment is a fight, getting the correct care and treatment is a fight, for most of us neither Thailand or the Priory is an option- if we can make it through the humiliating, degrading DLA and ESA application processes without attempting to end our own lives, we may have enough money to scrape by on.

Celebrity mentalism and the discussion of it could be a great platform for more useful discussion- discussion that perhaps does something to effect change, something tangible, but it rarely is.

Every day I have to watch people I care about going without care and treatment, being refused help, being mistreated, struggling, fighting, being brave. I’ve yet to meet anyone who has got what they need, when they needed it. I’m currently watching someone I love very much suffer through months and months of having no hot water due to massive incompetence on the part of her housing association, she’s got sicker as a result- I don’t see Rethink jumping in with a statement of support.

Mainstream media does and will always use celebrity mentalism as a platform for nothing more than gawking but I think we should expect more of MH organisations.

There is an army of honest, brave, frank bloggers within the Madosphere (most comprehensive blogroll here at TWIM)- all of them challenge stigma far more than any 15 minute interview with a celebrity (and you’ll note that those interviews are all ‘when I was mental’).

All of these bloggers provide education and information about mental illness- and any of them could be your next door neighbour, your daughter, your son, your boss, your postman, your GP, your child’s teacher, the checkout operator at Tesco, your friend. They just might not be famous enough to make the difference they deserve to make, they just might not be famous enough to really challenge the way you think about mental illness.

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The Right Help To Be Terrifyingly Confused

Posted in DID, mental illness, Multiple Personality Disorder, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , on April 18, 2012 | 21 Comments »

I was deemed worthy at last, funding was awarded for the long-awaited ‘right help’. I have a new therapist; her adjective is yet to be decided but she is both right and helpful. I’ve only met the <something> therapist twice but already I can see that the need to constantly explain myself, my thoughts, my symptoms, my actions, to somehow justify my ‘complexity’ has gone. I’m not complex, I am a bog-standard multiple (if such a thing exists- we are wonderful, interesting, exotic creatures) I am ‘normal’. Abnormally normal but normal all the same- I fit, my experiences aren’t wildly different from what they ‘should’ be anymore- there is some comfort in that. Just being able to speak to someone who ‘gets it’ instead of someone who looks terrified/confused/doubtful/anxious/conflicted/fascinated/horrified is, is- well it’s ‘ok’.

Whilst I can already see that the right help is both right and helpful it is also a number of other things, mainly confusing, a word that means more daunting than daunting, terrifying and uncertain.

The confusion is painful, endless and ultimately a bit confused. I don’t think even I could come up with a nice, flowery metaphor to explain it. It is agony. Whilst each session of the right help so far has brought  relief at not being treated like a psychiatric curiosity or a problem, comfort in finally being heard and the knowledge that there is now ‘something’ there to help- there is always a period of intense sadness afterwards when I realise the <something> therapist didn’t at any point say-

“I’ve made a terrible mistake, I treat DID, I am the wrong help for you”

Of course the confusion is compounded as she might well have said it and I just don’t remember…..

I may have to invent a word that means more daunting than daunting, I’m not sure there ever could be a word that sums up the way it feels to finally be starting your life, nearly 37 years after your life officially started. Whilst  that feeling may hint at something resembling positivity, I’d argue at this stage it’s more a recognition of potential, potential.

The right help is also terrifying; I think it may even be more terrifying than no help and the wrong help. I can’t decide (see ‘confusion’ above) and I can’t put it in to words. I spent so long appearing never to need any help for anything; it’s hard to adjust to allowing help- especially help that might actually help.

Nobody can tell me how long the right help will take, nobody can even guess but I know it’s going to take a long time. I always have millions of questions; many of them don’t have answers. I think I’m supposed to do the whole ‘acceptance’ thing but it’s just not happening. I’m also supposed to just ‘be’ I’ve never been able to ‘be’ I ‘do’ I don’t ‘be’. I think at this stage I’d accept being lied to if it meant I had something tangible instead of the constant uncertainty about what comes next and “when will I be able to <insert anything from the mundane to the fanciful here> again?”

I’m exhausted, career mentalism is draining and challenging, the rewards are few and far between, the pay is terrible and my annual leave entitlement is zero.

My job is survival, out of all the jobs I’ve had (and they have, unsurprisingly been many and varied) it is without doubt the hardest. I often have nothing to show after a 24 hour shift other than the fact I am still breathing. There is nobody to recognise my ‘achievement’ other than myself.

I know she is in there somewhere.

The conditions, pay and benefits may be atrocious but there is some hope for the pension, I just have to survive long enough to accrue it.

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Imparting Knowledge In Story Form

Posted in blogging, diagnosis, DID, Fantastic CPN, mental illness, Multiple Personality Disorder, NHS, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , on April 1, 2012 | 27 Comments »

I’ve thought a lot about the blog- how it should continue, if it should continue at all. As a Madosphere blogger I feel I have a responsibility to talk about mental illness, to challenge stigma, to help people try and understand what it’s like. But I don’t want this blog to become ‘a DID blog’ there are plenty other great DID blogs out there and anyone who is literate and has rudimentary internet skills can find loads of information on DID. I want this blog to continue to tell its part of the story.

It’s been 3 weeks and 3 days since I was declared ‘officially DID’ or as I prefer ‘officially multiple’ and in those 3 weeks and 3 days, as I predicted- nothing has changed, I’m still waiting for the ‘right help’ with no idea what the right help will look like when it comes, if it’s coming and if it will be right and help. The day my broken leg was confirmed I was given a plaster to put on it, not a plaster cast- an elastoplast. Whilst this was the best elastoplast I had ever been given it washed off in the bath the next day. So my leg is still broken and it still hurts an awful lot.

The NHS don’t do DID (although NHS Fife did tell me in response to complaint number 2 that “our staff are very experienced in dealing with dissociative disorders…” they were referring to the staff in the last bin I spent time in. Yes that’s right the bin I entered barely able to complete a sentence with a stable identity, confused, suicidal, distressed- basically very mental indeed. The bin I left less that 24 hours later having being assessed by the nurse in charge as ‘seeming perfectly rational’. Needless to say the complaints process is ongoing, I’m not sure it’s making any difference whatsoever and its quite clear the people dealing with the complaint know nothing about DID but it needs to be done.) There are no NICE guidelines for dissociative disorders and it appears in the absence of knowing what to do- the NHS do nothing. My current ‘treatment plan’ revolves around 4 zopiclone a day so I may drug myself to sleep when it all gets too much. The Fantastic CPN is being as fantastic as ever and those few hours a week are precious. I’m not sure the CPN agrees, I imagine it’s a lot like being ambushed.

I am currently waiting for a private sector provider to draw up some sort of ‘something’ I actually don’t know what. I do know that this ‘something’ will have to be paid for, I also know the NHS Fife funding panel meets on the 4th of April, I don’t know if we’re going to make it and if we do, will we be considered worthy of the cash?

One of the most difficult things about being officially diagnosed is that you don’t always believe it, you don’t always even know it’s happened, you don’t think it can be right sometimes, it’s confusing and upsetting- there are days when the realisation that the devastating diagnosis, the one thing we never wanted it to be- is true. Then you get smacked in the face with the mental stick as you realise only a multiple can’t always accept they’re a multiple because not everybody inside agrees….

One of my favourite things about being mentally ill- aside from the great pay and decadent lifestyle has to be wanky platitudes. I get new ones now I’m a multiple-

“it’s an amazing survival mechanism, it’s helped you survive”

But it’s a survival mechanism that makes you acutely mental, eats your entire existence and destroys your life as you know it. It also makes you survive; regardless of how awful your day to day existence is. The whole ‘survival’ thing is a hornets nest in itself, another blog for another time maybe?

“We are all in ‘parts’”

Yes, I agree everybody has different parts of themselves- for most people however these parts work seamlessly together and manage to represent the person with the parts as a whole, functioning human being.

Most peoples ‘parts’ don’t act completely independently of each other, they don’t seize control of the body and go off and do their own thing- without telling any of the other parts. Most peoples ‘parts’ don’t get up in the night, attempt to remove a limb and leave another part to clean up the damage. Most people’s ‘parts’ don’t buy things from Amazon that invariably get collected from the postman by another part who has no idea what to expect when they open the package. Most people’s parts don’t buy their own clothes (opening the wardrobe in the morning makes me feel like a mental Mr Benn), most people don’t have two or three parts that believe they are not parts at all but are in fact completely able to live independently, most people’s parts don’t send emails, write notes to each other, have conversations with each other……. I could go on.

“They are all parts of you”

This has to be my favourite, I lied, I fucking hate it. In fact I hate the term ‘parts’ they’re not ‘parts’ they’re ‘people’. I’ve developed a new response for this kind of thing ‘I know logically you are correct but that’s not the way I feel’ this response makes me sound calm, rational and accepting. It’s actually cover for

‘Uh-huh right….? You are talking shite, I don’t believe you for a second but I know if I say that out loud it’ll sound mental’ (and we wouldn’t want that).

So I’m still here and it’s April- I survived March. It’s not getting any easier, every day is painful, long and disjointed, I still have absolutely no quality of life and I fear even when the right help comes there will be little or nothing left to save. If I’m not doing/saying/thinking things I don’t want to I’m almost incapacitated by ‘head noise’. I’ve always complained of head noise but I’m not sure in all my time in the MH system anyone has asked me to define it. I found this short film, it’s not perfect but it’s close, enjoy.

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March for Survival

Posted in mental illness, psychiatrist, tea, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , on March 1, 2012 | 12 Comments »

It’s March, I survived February.

February, with its extra day was both painfully long and upon reflection short- reduced now to nothing more than a blur of things I don’t know and things I can’t remember.

February brought more pain, fear, confusion and suffering. February took with it, as it went, more hope and optimism than I would have imagined possible. The further, rapid degradation in anything resembling my quality of life is unquantifiable. I’m not living; I do not even exist other than in the moment.

I am surviving.

In 7  days I have an appointment with a specialist, another appointment, another psychiatrist, another specialist. I’m told this appointment is with the ‘right help’, the right psychiatrist, the right specialist.

I hope they’re right, experience tells me to be extremely cautious, I’ve been told this before and it ended badly. Very badly.

So for 7 days I will continue to survive, hoping, in the face of what I know, in spite of all my experience,  that I’ll finally get to meet someone who listens to my story and says ‘I’ve heard stories like yours before, you’re not wrong, it’s not your fault and I can help.’

I don’t know what I’ll do in 8 days.

I don’t know.

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