Inside my head

Many websites showed a black-out protest page or some information about the proposed SOPA (Stop Online Piracy Act) bill. I'm not against stopping piracy, however the tools used to achieve that shouldn't allow for far-fetching internet censorship and to me it looks like this bill is doing just that.
Of course you should inform yourself and if you're in the USA please act and let your voice be heard.

You can read about the SOPA here:
EFF: One Page Guide To SOPA
Red-IT: A technical overview of the SOPA and PIPA bills
Dyn: How these bills would break DNS
EFF: Free speech on the web

Act: Contact information for US elected officials

Why do I care? Simple, if this bill and the IP bill are implemented, I'm sure several European governments will try to find a way to do exactly the same. All leading to a heavily censored internet with no more free speech.

In August I wrote about my poor life conditions, since that time I have received a little money of what I am supposed to get. Someone is doing his best for me to deal with that side of my life, he has good hopes that he can mediate for me. So I compartmentalise that part of my life as much as possible. Yesterday morning I received news that it's likely I'll be paid by the end of this month. I'll be keeping my fingers crossed.

The good news is that I'm now in therapy, at least for my bipolar problems. Outside the therapy I'm doing my bit to get to grips with it. You can find many tips for improving sleep on the net, which is one important factor in keeping the mood swings at bay. I adjusted my lifestyle to that a couple of months ago and now I'm seeing some results. But since bipolar isn't the only problem I'm facing, it's a little improvement. My sleep alternates between sleeping well the first half of the night and a restless tossing and turning of the other half and vice versa. Today was the first night in months(!) that I slept straight through for 8 hours and woke up without alarm or other outside disturbance. It's not due to my mood regulating medication, one of them has as a side-effect that one can experience vivid, bizarre, lucid dreams or nightmares. I have experienced them almost every night since I started these medications. Some dreams were actually funny, leaving me with a grin for a little while after waking up, but they can and have produced the horror-like nightmares. These dreams do influence my mood  for the first half of my waking day. After that my mood slips back to the level it was before sleeping.

Four days per week I go to group therapy. The group is designed to stabilise for either re-integration or further therapy. It's all very basic and I am having difficulties to actually use the therapy for my own problems. One of the remarks in the psychological report of the tests (of 5 days!) they have done was that I'm too cognitive for my complex web of problems. They forgot that I managed to get into my forties without crashing 'only' twice, which of course does require someone to have strong cognitive abilities. Perhaps too strong for this therapy. All too often I outsmart the therapist and have things to add that haven't been thought of. My sister's friend U. suggested I should write a book about my survival tactics, he was and still is thoroughly impressed with how we managed to cope with life and the influences of the mental illnesses on it.

The survival tactics we (my collective, or group of separate identities) employ didn't stop certain symptoms to occur. As far as I can recall, I might have been having these psychotic effects from a very early age onwards. Some of these psychotic effects have been accepted as part of my life from that time onwards. The sightings of shadowy figures were labelled ghosts, the other odd sights, smells and sounds as well. I just learned not to talk about them as I was the only one seeing, hearing or smelling them. The downside is that because of that, nobody ever knew something was wrong. Not only that, reality is a very vague concept for me, I just learned to identify the reality that is commonly accepted and remained silent about anything 'out of the ordinary'. Some psychotic effects do still scare me, especially the smell of burning hair or flesh. I'm sure my ex-es can recall me looking for something that caused a strange smell. Lately it manifests itself as the smell of a wet dog (amongst other things), and since I have no dog or one nearby, nor any source that could cause it, it's all in my head and annoying as hell. Likewise with the sounds that my telephone should make upon a message or notification arriving. There is nothing in my home that can produce the same sounds and upon checking it is clear it's not my phone.

Whilst trying to find the right medication for the bipolar mood swings, I also had one that should work anti-psychotic. I hadn't noticed it took away the first level of psychotic effects. (If you've been psychotic due to bipolar or experienced a variety, it might be useful to start grouping the effects in levels. This will help your psychiatrist enormously.) I only started to notice the difference when I was taken off those mood-stabilisers. Now I don't have anything anti-psychotic, partially by my own request since I know what they are. Perhaps more appropriate is to say I know what people expect not to see, hear, smell or feel. (I don't have many touches psychosis thankfully!) So I can differentiate between what is real and what is not. The advantage of having them from a relatively young age is that they are less scary to me than for someone experiencing them for the first time. Due to that I managed to stay on my feet a lot longer than is normally expected.

Currently I'm experiencing the level one symptoms, yet my mood is reasonably well. (There seems to be a theory that the psychotic effects are linked to the levels on the bipolar scale.) I'm cautious though, I keep a close eye on how good my mood is, to prevent an upswing that might lead to another manic episode. I've also started to track my mood, a simple spreadsheet on my PC and a wonderful app on my phone. If you are bipolar or suffer from depressions, you might find it useful too: T2 Mood Tracker and some tips for additional categories can be found here: Custom T2 scales.

As I mentioned above, I've started therapy at the beginning of September. So far I can't say that the therapy caused any progression, but other factors have. I'm still seeing my own therapist who is remarkable in seeing through the switches between alters (or identities). Recently we (some of my collective) tried watching the TV-series "Quantum Leap" again, but had to stop watching since the recognition of both the discomfort and sometime humiliation was referring too much to our own problems. In the series Dr. Sam Becket is thrown back and forth through time, occupying someone else's life to set things straight that have gone wrong. The initial arrival always causes him to be disoriented about time, space and situation he is in, sometimes highly embarrassing or humiliating. When I 'wake up' from a switch it is often much like that. I don't know where I am (unless it's an easy recognisable place), who I'm with (if it's a person I don't know at all, but another in my collective does) and what conversation that person had with the preceding alter (or identity). The confrontation with these effects with each episode of the series was just too much for us to handle. I'm quite sure there are people out there with MPD/DID who can identify with this. I discussed this with my therapist and she understood it immediately. As she said (with which I wholly agree), it is part of the healing process. There have been other events that contribute to my healing, but none came from the group therapy that I am currently having. The value of the group therapy is that I can help others with my experiences with coping and staying on one's feet. Hopefully soon I can find some useful things in therapy for myself which enable me to deal better with my bipolar, as the rest isn't supposed to be discussed there.

So despite that my basic life needs like food and a home are not quite as it should be still, I am feeling a little better at the moment. Hopefully I can maintain it and prevent a swing in either depressive or manic direction.

Lots of changes happened in my life since my last post on my blog and as with all changes, I needed time for the dust to settle to be able to see where I'm standing now.

The biggest change is that I'm now in part-time therapy, one focused on mood swings, psychoses and related effects. This therapy will hopefully enable me to deal with my bipolar in a better way, so I can build up strength to address the PTSD and MPD/DID. Yes, I still have a very long road ahead of me, but the journey has finally started after waiting a year and a half.

I find it hard to think of what this therapy has to offer, like quite a few in a predicament like mine, I already have employed many 'tricks' and ways to try and moderate the extremes of my mood swings. So I end up helping most of the group members, while trying to find ways to look differently at my own palette of moods and feelings. So far I didn't find any, but what did change was perspective on my life.

Now I really don't care how and when I finish all these therapies, if at all. My sheer complexity that made a relatively renowned institute turn me down for treatment sex months ago did cause a dent in my confidence for getting 'better'. The gradual change in my perspective was prompted by a relatively simple question, "What does it mean to be 'healed'?"

Some twenty years ago I would have replied something like 'being able to work, have friends, start a family with 2.5 kids and a dog', but twenty years ago I didn't know the extend of my mental issues and complexity. Although I must admit things were less complex at that time, now three failed (abusive) marriages, eleven moves (of which several international), twelve jobs and loss of many friends were added into the mix.

Almost exactly two years ago to date, a therapist asked me "What do you want your life to be like in ten years time?" I couldn't answer it at the time, I got as far as "I can name a few things I would like to have accomplished. But other than that, I don't wish for much. I don't need to be rich, if my family and I have a normal healthy daily life with no debts, I'm happy on that part." Now my situation has changed so much, that the family part has fallen off it. In a way it still hurts on some level, I miss the children, but I don't miss my ex at all.

Both questions caused a lot of thought, back then and now. So what does it mean to me to be healed?

I gave up on thinking about the pressures of society to be a valuable member. Screw that, I fought my way through life, working since I was twelve and for what? At first supporting my parents, then supporting my boyfriends, partners and ending up with almost nothing when my life crashed into the ground, leaving me shattered, battered and an ideal candidate for a closed wing of a mental hospital. (Which I did end up in for a while.)

I've shifted my goals over the past months. I don't need a family to be happy, I don't need wealth, just enough to support myself suffices. I'd love to live somewhere out there away from civilization, provided I have an internet connection and ideally a knight in shining armor who checks in on me from time to time. I'd reward him greatly for it.

That still doesn't quite answer the question, I know and I'm getting to it now. Healed for me means I can deal with my mood swings without ending in the extreme highs and lows of my bipolar, having a certain level of control over who controls my body and passing of information between the individuals that form my system, having found a level of peace with my past and the things that caused the PTSD, and last but not least, having found an even better level of acceptance and ways of dealing with the psychoses that crop up when I experience stress.

One part of this mess I wouldn't like to change, my lack of grasp on reality. Reality and fantasy are equally valuable to me, reality because it keeps me alive, fantasy because it enables me to feel a happiness I otherwise couldn't. The lack of a firm grasp on reality allows me to 'live' the fantasies in my head or even on digital paper. I never realized it as much as I do now, it's my fantasy world that actually keeps me going.

Even now I feel the depressive down slide underneath my conscious efforts to focus on the positive things in life, but the smile that my fantasy puts on my face makes it bearable, in some ways even preferable, since the strength of the depression makes the intensity of my fantasy world stronger as well. It is a powerful force that many creative people employ(ed) and I fully understand the scope of that now.

My financial and administrative life is still a mess and not properly in order, but I did get paid something and managed to keep my home and eat a bit more healthy now.

Now I'm on the start of a new change, my psychiatrist and I discussed the use of Seroquel (Quetiapine). Both she and I were of the opinion it wasn't quite suitable for me and she offered several options, but I went with her gut feeling about Natrium Valporate, even though that won't affect my psychotic effects. I started to switch meds last night, slowly diminishing the Seroquel while upping the Natrium Valporate over the course of the coming weeks. I'm curious to find out how those two differ for me.

You might wonder why I'm not asking something to address the psychoses, it is actually not as bad as it would be for someone else, I suppose. I must have been around 4 to 6 years old when I experienced my first psychotic episode. At the time I thought I saw ghosts, not surprisingly considering they did look like shadowy silhouettes of people. The effects of floors turning to seas and walls becoming flimsy curtains that move in the wind were also present rather early on. They don't frighten me anymore, I had nearly 40 years to get used to those effects and accepted them as part of my life. Every appearance of the ghostly shadow figure does shock me for an instant, until I realize what is happening and I am able to 'ignore' their presences. When I had a couple of days amidst my hallucinations two years ago I was at my wits end, fearing I would never regain control over reality again. Of course I did and it wasn't until someone mentioned that these shorter phenomena aren't part of normal life experiences but in effect are psychoses, that I started to view them as a problem. Now I'm stepping back from that idea, they're only a problem if I want them to be. When the floor turns into a wavy sea, I only have to take one step to realize the floor is there even if I can't see it as such. Now that is a big win for me.

What also is becoming a win is the knowledge that most of my manic and depressive episodes are chemically malfunctions in my brain. I'm well on my way down into a depression, but I still manage to escape reality by diving into my fantasies and write or try to make something artistic. Having a conceptual mind I am unable to create realistic visual arts, so I experiment with the abstract, not my preference though, I'd love to be able to sketch the beauty of nature, but again I found some acceptance for my limitations.

I tend to think that the year of isolation from the world enabled me to settle my basics in me. Now that I'm in therapy I notice the influence of the stress of just being there. My mood swings became more pronounces and the psychotic effects worse, but I'm determined not to give up. The therapy itself doesn't offer me much at this stage, I'm mostly helping others rather than focusing on myself. I know a lot of cognitive 'tricks' to keep me going, some of which I have shared here and there on EP.

Last but not least I like to mention another shift in focus. I don't fight against my illnesses any more, I fight for myself. I know I need to learn I'm worthy, I have a right to exist and above all that I'm so much more than the collection of my illnesses. It's still a long journey, but it is definitely worth it.

It's been a long road
Getting from there to here
It's been a long time
But my time is finally near

And I can feel the change in the wind right now
Nothing's in my way
And they're not gonna hold me down no more
No they're not gonna hold me back

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dreams come alive at last
I will touch the sky
And they're not gonna hold me down no more
No there not gonna change my mind

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
Faith of the heart

I've known a wind so cold and seen the darkest days
But now the winds I feel, are only winds of change
I've been through the fire and I've been through the rain
But I'll be fine

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith


I've got faith of the heart
I'm going where my heart will take me
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long road

Oh, it's been long road

When you're crawling from day to day,

Every morning I wake up from one nightmare or another, it's been like this for a couple of weeks now. I can say with certainty that the cause of these nightmares all stem from my deteriorating living conditions. My nightmares are all variations of deceit, abuse, abandonment and/or loss of what I hold dear. It isn't strange that I have these and although I try to keep clinging to anything positive in my life, the longer my situation lasts, the further I sink away.

I've been struggling to get my sickness benefits paid since the beginning of April. I've been paying my rent and food from my savings, then loans and now that has reached an end too and I'm living off the remains of my emergency stock, discounted food I can afford and gifts of others. I haven't been able to pay the rent, my landlord was kind enough to accept my plea for payment later in the month. It all should somehow be reinstated again soon, but it's taking ages and time isn't my friend at this moment.

My medication keeps me from becoming very depressed, but I can feel the darkness of it, nagging at the lowest levels of my consciousness. But those too might end soon, I can no longer afford them.

I'm not only worried about my living conditions, my health is deteriorating too. My body lacks a good immune system, most likely partially due to malnutrition, partially due to all the stress of my situation. I also noticed the gradual drop in energy levels which has now reached the point that I can barely walk more than two kilometres without almost passing out from exhaustion.

My situation is not only frustrating to me, it's also frustrating for those who try to help me. Caught between international regulations and legalities, it seems I have no rights in the Netherlands as long as the administration in France doesn't give me a letter with the official ending of my sickness benefits. They can't just give that without proper reasoning and thus it seems they dug in their heels and slowed down almost anything I tried to reinstate my income. I have no money for a lawyer and besides that, how am I going to arrange a French one while being in the Netherlands? I can't drive far with my medication, I shouldn't be driving at all actually, so I limited it to the bare minimum. Once my car has no more fuel left, it might become my last roof over my head if the situation doesn't change soon.

Friday morning I got a notice that my phone is going to be cut off. I'm lucky that my internet connection comes with the apartment, so one bill less to worry about. At least I can still reach out and stay in touch through the net, as long as my landlord is so kind to let me stay. Later that day a letter arrived from my insurance, my rights have been terminated effective as of the end of July. This complicates matters even more.

Since I can't deal with these kind of setbacks any more, I dissociate rapidly afterwards. This lead to a climbing manic state over the weekend, which was about to reach its peak Sunday evening, but somehow I managed to force myself to stop. It's the first time I managed that, but that came at a price, the rest of my Sunday was shot. I don't recall what I did that evening, all I remember is that I wished for the day to end.

Yesterday morning I saw my therapist again, she was very comforting and during our session I heard from my case worker in France, he had -as is usual during the past weeks- no news. Once home I escaped again, I switched involuntarily being unable to deal with it all and RL (real life) no longer existed for that alter.

Today I got confirmation about the added complications. Hope of having my benefits reinstated disappeared like snow in the sun. I have to wait longer now that someone screwed up my rights, how much longer is unknown. Things have been rough the past week, living on discounted bread, pasta or rice made with stock and a simple cheap sauce, and if they had some, discounted veggies. All cut down to insufficient portions. Now that too is reaching an end. I still have 20 Euros, someone in therapy was so kind to give it to me last week. I'll have to spend it very wisely, even if I can manage to borrow money from someone again, it'll take days before I get it.

I'm inclined to call the crisis line, although I know they can't do anything, perhaps ending in the crisis centre and getting some 'free' proper meals might be a great solution somehow. I really wouldn't like to end up in one, but I fear I have no alternatives left. I'm cold from low energy levels, shaky from the stress and hungry from the lack of food. I'm dressed for a cold winter while it's 21°C inside. I really hope this mess will end sooner than later, it's breaking me.

Sometimes friends make remarks about me to me and this morning I had a great email from a friend with such a remark. To speak with her words, "I am as always inspired by your joie de vivre." Reading that I suddenly realises I have my very own recipe for surviving.

My world seems to be against me. I'm having great problems with my income, it's been missing for 3 months now. Proper therapy hasn't come much closer, one place rejected me for my complexity. *sighs* It took them nearly 6 months to conclude that and that was based on a diagnose made almost one year after being put on their waiting list.

My own attempts to unravel myself lead to theories that would need a mind of understanding quantum fizzwicks. I find myself brushing the thinking of the field of quantum mechanics in order to find explanations. The best way to describe my findings would be pointing in the direction of quantum disentanglement in my quantum system. I honestly don't expect anyone to understand this, even I can only see this at certain moments of clarity. Can I find help for this magnitude of complexity? I doubt that, but I won't give up trying to find a way of getting the system under control somehow.

Back to why I wrote this...

Joie de vivre...

I had to think hard about its meaning for me, I didn't see it myself. I do try to see the joy in everything, no matter how small. Unfortunately it's often depicted with abundance, in my view it doesn't have to be.

Every morning I step outside and watch my passion flowers, some days there were four open on one plant, they give me great joy. I treat myself a Kenyan coffee every now and then, but I also find pleasure in my regular brew. All that while listening to birds nearby. Especially Sundays are great for that, there is hardly any traffic, so all peace and quiet.

I could go on, but it all comes down to this: Approaching all the little things that give me joy with a little more attention makes life a little more bearable.

It's no big secret, but society always seems to push us to more and faster. Finding our own little happy pace moments in between the turbulence of life, is probably our best way to survive.

Even when darkness surrounds me, I still manage to say to myself that this might be the worst place to be, but at least the coffee is great.

Whatever is happening, don't give up on seeing the niceties in life, no matter how small.