Posted in DID, Dissociative Identity Disorder, Head noise, Humour, metaphors, MPD, Multiple Personality Disorder, tagged chipmunks, Dissociative Identity Disorder, Multiple Personality Disorder, not breaking the rules, Told you it wasn't like Stephen fucking Fry on August 9, 2012 | 2 Comments »
Posted in blogging, children, communication, DID, Dissociation, Dissociative Identity Disorder, friends, Internal Communication, mother, MPD, Multiple Personality Disorder, parenting, single-parent, Skills, stress, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged DID, Dissociative Identity Disorder, Mental Health, mental illness, Multiple Personality Disorder, Parenting, Told you it wasn't like Stephen fucking Fry on July 29, 2012 | 16 Comments »
Nothing happened yesterday so I’m still fine.
I’m still coping, it still looks good.
It’s as though, when the 7 year-old returned home, I faced a choice-
Parent
Or
Have DID
Obviously this wasn’t a choice I could make and as with all things for those of us with DID, the choice gets made for us. I can see what’s gone ‘wrong’ for want of a better word, what happened wasn’t a wilful mistake, it was a reaction. The way things are now is working; yesterday even included some fun activities, such as-
I can deal with all of this- and more, I can remain calm and appear normal the entire time, nothing gets the job done quite like dissociation. It works well for the children but It’s not sustainable.
I’m exhausted and that constant, low-grade pain that appears to have been gifted as some sort of bonus with DID that I’d usually be able to ignore completely has shifted up a notch. I’m horrified at how rapidly shitty “coping mechanisms” (why we call them that when they are invariably methods employed when we’re not coping is a mystery to me) used in the past have tried to creep back in and saddened by how difficult I’ve found this weekend so far.
I’ve been buoyed by the messages friends have continued to send, here and elsewhere, our resident comment moderator has been allowed to sneak out in the wee small hours to reply- that connection is vital and I’m grateful to those of you who recognised that even when we’re not allowed to talk, we’re allowed to read. You’re all very special and very missed, the internal pining-o-meter is off the scale
The silence is making me desperately unhappy and the external silence is no longer reflective of the state of things internally. I’ve never been so glad that you can’t tell by looking and again, I’m grateful for dissociation as this has allowed me to parent seemingly unhindered by the inner turmoil. I have a million thoughts but very few words, I miss my words.
If nothing else, this weekend has dragged me out of the creeping denial that was setting in again and that’s positive though painful.
I won’t deny that things are incredibly difficult at the moment but as ever my natural curiosity and love of learning has provided a distraction. I don’t always like what I’m learning but I do manage to pique my own interest often enough to make it all a bit less shitty for a little while. My low emotional tolerance and high distractibility have been assets this weekend.
I have an appointment with the <?> therapist tomorrow and I’m awfully glad I do. I’m confident that between us we can come up with some things that will help make the current situation not better, not even ok but just less de-stabilising. At the moment I’ll settle for regaining the courage and confidence in my skills to face coming home again after the session.
I have some new practical issues to face tomorrow. In order to get to therapy on time I have to leave the house at 7.30am, half an hour before the 7 year-olds holiday club thing opens. I’ve asked the 15 year-old to get up some 7 hours before her preferred rising time and mind her brother whilst I’m out. She’s agreed to do this but has yet to be persuaded to go to the extra effort of washing dressing and delivering the 7 year-old to his holiday club thing. So I am a little concerned that the current need to crash out on the bed for anything up to three hours in a switchy, drowsy, head-noisy haze after a therapy session will have to be ignored in favour of a return to coping.
So as ever, I don’t have my troubles to seek and the pace of life just feels relentless at the moment, there’s never a dull moment with DID.
I’d love some dull moments.
Posted in Anxiety, CBT, DID, Dissociation, Dissociative Identity Disorder, emotions, Fantastic CPN, hypervigilance, insight, Internal Communication, MPD, Multiple Personality Disorder, Spiderman, The Fear, The Smallest House in The World, Triggers, Twitter, Uncategorized, tagged DID, dissociation, Dissociative Identity Disorder, Mental Health, mental illness, Multiple Personality Disorder, Told you it wasn't like Stephen fucking Fry on July 26, 2012 | 20 Comments »
I don’t think I’ve ever detailed my virulent hatred of CBT (cognitive behavioural therapy) on the blog, I talk about it a lot on twitter and as some of my poor victims will know, I used to practise it there.
In times of distress I was always available to offer therapy, mainly along the lines of-
WHY ARE YOU DEPRESSED? OTHER PEOPLE ARE FAR WORSE OFF; SOME HAVE DEAD PETS. JUST STOP IT!
And
YOU ARE EMPLOYING MAGICAL THINKING. JUST STOP IT!
And
YOU’RE NOT BEING PARANOID. PEOPLE DO HATE YOU- BECAUSE YOU’RE RUBBISH. JUST STOP IT!
I’m in semi-retirement from my CBT practise these days, though rest-assured, should I spot you indulging in a little black and white thinking, mind-reading or catasrophising then I will point it out and insist you desist.
It may surprise you to know that I’m not a trained CBT practitioner, but I am a quick learner and managed to pick-up quite a lot during my own very brief dalliance with the technique. I had three sessions of CBT before I was declared too mental; I don’t remember much, in fact all I remember is
“WHY WOULD YOU MAKE YOURSELF VOMIT? THAT’S JUST STUPID”
Which as you can imagine was enormously helpful for someone who at the time was attempting to ‘regulate their emotions’ by throwing-up every morsel of food she ate. I waited 9 months for some harridan in a maxi-dress (she may have been a psychologist) to berate me for being mental. I’ve never been so glad to be declared ‘un-helpable’ in my life, being discharged was a gift.
CBT was never going to help me; I’m quite capable of berating myself, I don’t deny I sometimes indulge in all the common cognitive distortions but I’m a multiple so I also know when I’m doing it, why and what to do about it. I can administer CBT to myself. It doesn’t make me any better or help at all in any way but I know I should keep doing it or everything will go completely wrong and end in disaster. Furthermore it will all be my fault; I know others will blame me for everything as they all think I’m rubbish anyway.
There is one psychotherapeutic technique with a cognitive basis I don’t despise completely- reframing. I love a good reframe. I often reframe my days in order to make myself feel better; I’m quite the Polyanna and on balance, probably wear my rose-tinted spectacles as often as I wear my shit-tinted ones. At this stage I probably would lose the will to live by 10am most days if I didn’t paint everything with rainbows-
Forget an entire day- it must’ve been rubbish anyway.
Got lost in Tesco- accidentally found the stationery aisle.
Haven’t been out of the house all week- didn’t run away to Paris/Newcastle.
Drank too much wine- didn’t mix with benzos.
It’s a useful technique but there is a danger that a reframe can become a wanky platitude. The two run very closely together, I’ve sketched a graph to illustrate.
I can also spot a reframe a mile away so often feel patronised and invalidated, sometimes this is justified. Back in the day of the frequent dissociative trips that ended in police involvement, MHAs, helicopters, trips to A&E and the bin etc the Fantastic CPN would always comment “but you came back and you’re ok”. I’m not sure what my response at the time was, these ‘trips’ left me confused, terrified and ashamed but the fact I was still alive was supposed to be enough to comfort me when it was quite clear I had completely lost control of my mind and my life. So reframing, whilst useful can also be a tricky balancing act.
The 7 year-old has returned home, earlier than I planned. I’m not entirely sure how this came about but I’m sure there’s a paper-trail somewhere. Today I finally have a man coming to fix the TV- you can’t have a 7 year-old child in the house with no working TV, well you can if you
a) dislike children
and
b) are happy to provide round-the-clock entertainment
I’ve mentioned before that this kind of situation, where I have to allow a stranger to enter the smallest house in the world is very challenging for me. I don’t imagine for a second that the TV man presents any real threat (other than to the bank balance) but I am crippled by hypervigilance.
I have extremely keen senses- all of them, they are my useless superpowers. I’m always on the lookout for signs of danger, be they real or imagined. I am permanently primed, ready to freeze, flee or have a complete meltdown at the first sign of peril. It’s not a good way to be, physically or emotionally- hypervigilance makes me mental, bonfire night in this house is probably similar in many ways to bonfire night in Battersea Dogs Home. I can’t just stop being hypervigilant and so, at times I hate myself for it.
I clearly needed some sort of reframe, so you can imagine my unbridled delight when I found this article that confirms that I am not only super-human but Spiderman. I have nothing to fear from the TV man, unless of course his name is Norman Osborn…….
click image to read article
Posted in children, co-sleeping, communication, DID, Dissociation, Dissociative Identity Disorder, emotions, hugs, insight, Internal Communication, mother, MPD, Multiple Personality Disorder, NHS, parenting, single-parent, Skills, stress, tea, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged DID, dissociation, Dissociative Identity Disorder, Mental Health, Multiple Personality Disorder, NHS, Parenting on July 20, 2012 | 16 Comments »
Today I have been a Mama for 18 years. That’s technically not true; I only became “Mama” around 6 and a half years ago when my youngest son decided that’s what he was going to call me, the older children followed his lead. Previous to that, I’m not sure what my title was but my job was the same.
I have three children- an 18 year old son, 15 year old daughter and a 7 year old son. The children are generally happy save for their own individual neuroses; they are intelligent and good-humoured, curious, energetic, polite, creative, sociable in their own unique way and very loving.
My parenting style is eclectic though at times, probably best described as “haphazard” I kind of make it up as I go along. Cereal (branded or generic) is a legitimate dinner at least once a week, baby wipes are an excellent substitute for a bath every other night, ketchup is a vegetable. 3 hours a day on the internet is “learning”, swearing is ok if it is grammatically correct and used appropriately. Discussion at the dinner table is actively encouraged even if it is about world hunger or decomposition- which as anyone with a 7 year-old son will know; it often is. Bedtimes can be fluid if I’m not craving peace; curfews are negotiable if the text messaged request is funny enough. Later-on drugs can be experimented with as long as they’re not chemical or addictive, getting drunk is ok as long as you stay safe and don’t get “fall down, piss yourself drunk”. A screwdriver is a legitimate toy, breaking things is “science”, woodlice are pets. Food colouring is for icing, mashed potatoes and baths. Beds are for sharing, books are important but can be annotated if desired, magnifying glasses are essential as are torches. School is crucial and should be approached with enthusiasm and the courage to question, further or higher education is optional. Individuality is cherished, love is unconditional.
In return for my eclectic parenting style I have 3 rather wonderful children, all popular with peers, all healthy, all able to come to me when necessary as far as I know- as far as any mother can know I suspect, after all you don’t know what they don’t tell you. I know I’m not an ogre- the 18 year old is able to discuss his sexuality with me, the 15 year old trusts me with her secrets and friends, the 7 year old still thinks I am a walking encyclopaedia even though I have led him to believe that the answer to many questions is “magic” (accompanied by appropriate hand-gestures and “woo” noises).
I’d be lying if I said my mental health hadn’t affected my children, particularly over the last year or so. They have had to go through things and witness things no child should ever have to be subjected to. The one thing I know I will never forgive the mental health system for is the effect their mistakes and negligence had on my children. I obviously feel guilty about my own contribution to what the children suffered but I know I couldn’t help it. I also know I repeatedly asked those who should have helped me to help- it’s not my fault they didn’t.
Even outwith times of crisis and given that the illness I have, dissociative identity disorder (DID) doesn’t just suddenly appear in adulthood but has been present in some way throughout my life, my mental health has affected my children and my relationships with them from the start.
Today, July 20th 2012, I can only remember one of the ‘starts’, I currently have no access to memories of my children prior to 2005, it’s as though I wasn’t there.
I wasn’t there.
I have a metaphorical book of facts; I can tell you birthweights, the ages at which developmental milestones were met and have the odd anecdote but beyond that- nothing. I have many photographs of the children, sometimes they can help access a memory of a time, place or event but it is to my eternal sadness that there are very few, if any photographs of me and the children. I’m terrified of having my photograph taken, in the few photos that do catch me, I look terrified. I have no proof that I was ever there and in the absence of feeling like I was there, this is difficult. The children don’t have DID, they do have memories and they often share them. Their accounts of me are usually positive so I take comfort from that. I also know that whilst I may not be able to access my memories of the children- they are there and I’m hopeful that, in time, they will become my memories too.
There’s no doubt that my mental health has had many negative impacts throughout the children’s lives but I’d argue the positives from having multiple Mama’s outweigh the negatives.
I am able to share my children’s interests- everything from the 18 year-old’s love of trains and foreign languages, to the 15 year-old’s love of reddit and shoes, to the 7 year-old’s love of Lego and Spiderman.
I am a very accepting person, anything goes. I have a moral compass that spins freely. Nothing my children do is unacceptable, certain situations may need a careful approach; some extra thought but nothing phases me. I’m slightly challenged by the 18 year-old’s support for Scottish nationalism (with a capital N) but there really is no-one better for him to discuss it with and I’m optimistic I can convince him otherwise but equally happy if I can’t. I frequently annoy the 15 year-old with my general ‘enthusiasm’ for things but she knows that it can be used to her advantage- be this in shoe or pancake form. The 7 year-old can vomit on demand at the dinner table should I stray from his desired diet of processed beaks and feet wrapped in batter, served with bastardised potato shaped into smiley faces, animals or letters but he knows I love those smiley faces, animals and letters as much as he does. I don’t stress over the little things, meeting the 5-a-day requirement in this house often includes the consumption of “imagination salad”.
Thanks to my amazing powers of dissociation I am excellent in a crisis, should you back-flip into the corner of a table and sever a blood vessel there is no-one better to accompany you to A&E. I am a calm, reassuring presence even when faced with spurting blood and general distress.
I am fiercely protective of the children and attentive to their physical, emotional and environmental needs. This means I am happy to demand a same-day GP appointment in the face of cross-examination and insistence that such a thing is impossible from the receptionist. I am quick to challenge a school “behaviour policy” that uses shame to try and elicit compliance and should the children desire a mural on their bedroom wall or fairy lights in the kitchen than that’s ok too.
I am a good Mama.
So why today am I sitting here, worrying?
I’m worrying because tonight I have promised to take the now 18 year-old out for his first legal pint- out, to a pub. I don’t need to tell you just how challenging this is, I briefly began to consider all the known triggers and stopped when I got to double figures. I daren’t even think about the ones I don’t know about. I’m confident that I will appear well, it may be the quickest pint ever but I’m sure it’s something my son will remember forever and I’m honoured he chose me to share this moment with him. I’m pretty certain that the situation will be so stressful I’ll have no memory of it at all and I don’t doubt that it will cause some internal distress, but I’m going to do it- that’s what Mama’s do.
I’m worrying because on the 3rd of August my youngest son will return to my care full-time, having spent the last 9 months or so living with his father. I have stayed in contact with him throughout this period and it was always my intention to have him home when I felt well enough. The choice to wait until I was well enough wasn’t mine to make so he’s coming home a little earlier than I would’ve liked, I am in no doubt that this is the right thing to do. I accept it will be challenging and I accept that my progress, which to-date has been consistent and rapid will probably slow as I try to combine therapeutic work with caring full-time for two children again.
I’m worrying because although I know I’m a good Mama, I’ve lost a lot of confidence in my skills, I share the role with several others. They all have something to bring and all have contributed in some way to the amazing creatures the children have become. I don’t expect it to be easy but I know, in time, I will get that confidence back. In spite of everything I have three securely attached, integrated little people to love and call my own.
Well I say little people- the 18 year-old is 6ft 2 with size 17 feet, I can only hypothesise that his father was a giant or a clown- perhaps a giant clown? I have no idea and I suspect, given my track record with men that some things are best left dissociated.
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 DID, Dissociative Identity Disorder, Mental Health, mental illness, Multiple Personality Disorder, Told you it wasn't like Stephen fucking Fry 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.
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 bipolar, DID, discrimination, dissociation, Dissociative Identity Disorder, Mental Health, mental illness, Multiple Personality Disorder, NHS, stigma, Told you it wasn't like Stephen fucking Fry 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).
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.
Posted in communication, DID, Dissociation, insight, Internal Communication, laptop, MPD, sleep, suicide, tea, Told you it wasn't like Stephen Fucking Fry, Triggers, Twitter, tagged DID, dissociation, Dissociative Identity Disorder, insomnia, Mental Health, mental illness, Multiple Personality Disorder, the fear, Told you it wasn't like Stephen fucking Fry, Twitter on June 25, 2012 | 10 Comments »
I never did write that post on sleep, I alluded to it often enough, my frequent references to sleep and teasers about “that post” are scattered throughout the blog. I’m not even sure what that post was now so I’m writing this one instead.
I can’t sleep, well I can, but not in a way that’s either useful or healthy. My inability to sleep makes me feel somehow deficient, lacking in basic life-skills, sleep-wise I am developmentally stunted, my ability being akin to that of a 3 month old infant- but without the daytime naps or beguiling smile to make up for it.
I am a horrible infant.
I know why I can’t sleep but contrary to my usual “knowledge is power” stance this knowledge does little or nothing to help.
Imagine if you will, that every night you have to get a group of people, all with their own thoughts, needs, complaints, concerns, fears and desires to get into bed, stay there and sleep all night.
Are you imagining it?
Your imagination is my reality
My sleep problems aren’t wildly different to those of your average chronic insomniac- the problem is I have all the problems of all the average chronic insomniacs- in one body.
Everybody, from time-to-time will spent a few wakeful hours in bed of an evening ruminating- a word I have real difficulty using thanks to the NHS standard CBT- based therapeutic approach.
“are you ruminating?”
“er…well..yes…I do worry…”
“WELL STOP IT!”
I feel guilty for ruminating but it’s not something I would choose to do and in my defence, much like a cow, I can’t digest things without some rumination. My rumination takes many forms, I think about all the kinds of things that other people think about- all at the same time. I think about what I’ve done that day, how it could’ve been done differently, what went right, what went wrong- all at the same time. A seemingly mundane trip to Tesco can result in hours of head noise where every possible perspective is discussed. It doesn’t help that evening head noise is inclined to be more of the “voices” type that the “other people’s thoughts” type, I hate hearing voices- it’s mental.
Everybody spends a little time at night thinking about the following day, what they need to do, want to do and hope will happen and not happen. I do this too but I think about the following day in every way possible- all at the same time. I can simultaneously plan a trip to Hobbycraft to purchase wool/stickers/glitter/paper/glue (but not colouring pencils, for reasons unknown the colouring pencils in Hobbycraft elicit a brief but heartfelt bout of sobbing) and my own death. I can think about what paperwork needs done whilst deciding whether or not to make soup. I can plan an awesomely fun trip to Ikea whilst fearing going as far as the end of the garden path. I worry about having to go out and dread a day of having to stay in. The only constant is that most days begin so early and after such little sleep that doing anything or going anywhere is often out of the question anyway thanks to permanent exhaustion.
Everybody has dreams and nightmares. I am unsure as to how I ever get as far as REM sleep given that my nights are a series of brief naps of around an hour but I’m not going to try and justify the physiology, I’m too tired. I have dreams and nightmares- often both- at the same time. I dream the dreams of many- concurrently. Dreams therefore just become another form of head noise, they are not a helpful way to process the day but are unsettling, confusing and something I’m keen to avoid. The only way to avoid dreaming is to avoid sleeping and sometimes this seems like the best plan.
Everybody has fears at night, even adults feel a little more vulnerable at night, I know I’m not the only 37 year old who does the “running, jumping thing” to get back into bed after a nocturnal bathroom trip. I can rationalise those fears- sometimes. I crave sleep; I am terrified of being asleep. I need to be awake, watchful but I fear being woken-up. I can see how ridiculous this is but I can’t help it and I console myself with the knowledge that my hypervigilance, combined with my ability to be awake for 22 hours a day means I have a very promising future in the surveillance industry.
I’m currently working on sleep and it’s very hard work, time-consuming, daunting, strangely lonely work. I’ve alluded to the “protracted bedtime routine” on twitter and anyone who knows me there will know that it has, so far been largely unsuccessful. I’m disappearing earlier in the evenings but I am still the first one up in the morning.
Daily Time Stamp- around 4am today
I’m grateful that we mentalists as a community have many interpretations of what constitutes “day” and the nocturnal mentalists are still there when I get up for the day to greet me and send me virtual tea and toast. I meet many fellow insomniacs and sympathise and of course there’s always the trusty Australians, Kiwis, Canadians and Americans happy to give me updates on yesterday and reports from the future.
The protracted bedtime routine includes your basic sleep hygiene (again, a term I hate and to quote a friend “Why do they have to call it hygiene? Hey you… dirty person…this is why you can’t sleep.. stop thinking, drink milk.”) so no tea after 6pm, no laptop/phone after 8pm, think happy thoughts, adjust room temperature, blah, blah- you know the drill.
Sleep hygiene for [number I will never reveal] separate people is a little different.
No tea after 6pm has been surprisingly easy, I suspect our tea drinkers are so desperate for sleep they’ll do anything.
Switching the laptop and phone off is relatively straightforward though both devices are often switched on again, and off again, and on again and so on.
Getting the room temperature right is a drawn-out battle between those who like it cold, those who like it warm and those who prefer an ambient temperature.
We’ve introduced several new rules to help with sleep (oh how we love rules)
- No nocturnal bathing- this has not gone down well, scalding hot baths at 3am were clearly very popular but we’re keen to confine the risk of requiring treatment for burns to office hours.
- No getting up before 5.30am -some do, some don’t. I think it’d be easier if we all woke up and got up at the same time- even if it was horrifically early. Staggered wakening has the “dementia effect” with “what day is it?” being queried repeatedly until around 11am.
- Snacking during the night is ok; we’re often hungry, thanks mainly to those who still react to any stress by foregoing food during the day. The challenge here is ensuring the snack is toast or fruit as opposed to inhaling half a kilo of Haribo at 2am.
- No nocturnal housework- this has actually worked quite well though I kind of miss the “Elves and the Shoemaker” effect. Dissociation is many things but it can be handy waking up to a tidy house with no recollection of having tidied it.
There’s a period of around an hour before getting in to bed that is taken up with ensuring everyone knows where they are and more importantly where they aren’t. I think this is a kind of grounding exercise, it mainly involves picking up various objects and pointing out “we didn’t have this before, we do now” it takes ages and not everyone is always convinced.
We throw a little light bedtime reading onto the mix, firm favourites at the moment are Mick Inkpen, Julia Donaldson and Allan Ahlberg (should my future career in surveillance fail I have the potential to be a fantastic children’s fiction reviewer). Then it’s time to actually get into bed.
One success in all of this is that we are now able to ‘sleep’ in the bed every night. Gone are the days of sleeping, terrified on the floor or sofa. I’m glad as the smallest house in the world is also the dampest house in the world and those nights on the floor in the gap betwixt bed and wall were grim and cold, the danger of contracting mycotoxins was both worrying and at times welcome if it brought with it the promise of premature death.
Getting into bed is an event, mainly due to the size of the stuffed-animal menagerie. I used to be ashamed of the number of soft-toys in the bed, ashamed and confused, I’m 37, I don’t think (I don’t know) I had a collection of stuffed animals as a child so why now? I’m over it, pillow-height should be amongst the diagnostic criteria for DID. I’m yet to find an acceptable solution to the problem of having more stuffed-animals than hands so careful arrangement of all bed occupants takes some time.
Lights-out is at 10pm, followed by “panicking because it’s dark” at 10.01pm at which point attention is drawn to the Chernobyl-like glow from the many glow-in-the-dark stars on the walls, ceiling and furniture.
Then the head noise begins. Sleep comes eventually- another success is the ability to get to sleep without medication, (apologies to anyone who has shares in Zopiclone) albeit briefly. There is something soul-destroying about waking-up, checking the clock and figuring out you’ve slept for 40 minutes. Best case scenario is that everyone has slept for those 40 minutes but more often than not those 40 minutes are as busy and noisy as the time we spend awake.
The nights rumble-on, they feel long and a lot of reframing is required-
Only mild pain- good night
No flashbacks- good night
No nocturnal wandering- good night
Two hours undisturbed sleep- good night
In truth, it’s all very shit and I’m fed-up of it. I’ll persevere as I have no choice but I’m beginning to wonder if sleep will ever be anything other than a terrifying, frustrating, exhausting battleground.
Posted in #MadParisJolly2011, alcohol, art, birthday, blogging, book, communication, diagnosis, DID, Dissociation, emotions, insight, Internal Communication, MPD, Paris, Skills, therapist, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged art, DID, Dissociative fugue, Dissociative Identity Disorder, Mental Health, mental illness, MPD, Multiple Personality Disorder, therapy, Told you it wasn't like Stephen fucking Fry on June 13, 2012 | 16 Comments »
Do you remember this?
Well I don’t but I still love the blog post. As humorous accounts of dissociative fugue states go, I think it’s possibly one of the best I’ve ever written.
There’s lots I could say about that post, I could tell you how angry I am that even though fellow multiples all over the internet spotted it and correctly identified it for what it was my ‘care’ team at the time continued to be oblivious to the bleeding obvious- even when I very kindly pointed it out.
I could tell you how glad I am I wrote it as it has been read many times since and has helped immensely in seeing what was really going on for me.
I could tell you how disappointed I am that a literary agent didn’t stumble across my beautifully crafted piece, browse the blog and negotiate me a six-figure book deal with a major publishing house.
I could tell you that now I know (and I know I know) I have DID the trip to Paris makes perfect sense, even if I still don’t know who went or why.
What I want to tell you is that I didn’t go to Paris this year.
For reasons unknown I hate ‘my’ birthday and it’s clear from what happened this time last year that the birthday is a major trigger for me- Paris was just the start of a period of several intense crises, another trip to the bin and a further decline in my mental health. I daresay at some point during my long therapeutic journey I will discover why I hate the birthday so much but it was enough this year to know that I did so that I could ready myselves to cope.
This year, the birthday passed without any major mishaps. Those of you who know me elsewhere will be aware that there was some preparation involved and I’m very grateful to you all for understanding and doing what you did. Some of you will also be aware that the birthday weekend had a number of added complications and some of you will know that I found it necessary to drink myself into a nice safe coma on two consecutive afternoons.
But I didn’t run away to Paris and I didn’t end up in the bin.
Frustratingly I’ve lost count of how many sessions I’ve had with the <?> therapist but it’s really not that many, around 16 maybe? I was going to start the next sentence with “in those 16 sessions I have made more progress than…” but I don’t need to compare it, you’ve read the blog.
In those 16 sessions- I have made progress
It’s a slow progress and sometimes it’s almost a kind of inverse progress but having spent my entire time in the MH system so far deteriorating, I’m delighted.
The bloody, painful, distressing, protracted battle with NHS Fife for the ‘right help’ was awful but I’m so glad I did it. The ‘right help’, the <?> therapist isn’t somehow magical, she just knows what she’s doing and what she’s done is help me to see that though my life is often painful and difficult, I have the skills and tools I need to keep going. Accessing these skills can be difficult, frustrating, exhausting, frightening and confusing. The right skills for the occasion aren’t always available, they are often not willing to do what they need to do, the wrong skills sometimes volunteer but they are there- all of them.
I have multiple opinions on multiplicity, having DID is hard for so many reasons and I still think if I could choose I’d choose not to have it.
I’d choose not to have needed to have it.
I’m glad I do have DID.
Only a multiple could cope with multiplicity. We have all the skills we need to do what we need to do, all the knowledge, all the experience, courage, tenacity, compassion, empathy, curiosity, humour and emotion. We are the ultimate self-contained, self-help units.
Now I have the right help and guidance I’m gaining confidence, learning about my condition, learning about myselves. I’m often uncomfortable with what I’ve learned, but knowledge is power and having spent the last two years or so feeling increasingly powerless and hopeless it feels good to get some of that power and hope back.
I checked Google calendar- it’s only been 14 sessions….
* Actually looks nothing like me
