Jumping

So this marks my 50th post and on the rainbow spectrum, things are pretty black (even though black isn't technically in a rainbow)....this isn't going to be a happy go lucky post, or even a special post. Just a post of thoughts. (With Lamby on my lap :))

So tonight I was watching Blue Bloods (a great cop show if you like cop shows!) and in it was this this girl and her baby and out of desperation to keep her baby from growing up and automatically being initiated into a gang, she jumps from the top of the building....with the baby. That's horrible right? It IS horrible and it IS a tragedy. But I could relate with her about something, that sometimes those people INSIDE the situation understand better than those OUTSIDE of the situation what is and isn't possible. Sometimes those outside of a situation can see more options, more ideas, more hope and that can be helpful. It's always worth investigating those avenues absolutely and sometimes it's worth placing almost blind trust in those outside of the situation but with the right experience to help get US out of that situation. But sometimes there is nothing they can do. In this case, the Police, kind, compassionate and well meaning, wanted to help her out, offered to help get her safe...the truth? This girl was unlikely to stay safe unless she entered into a witness protection program and given that she hadn't (at least reported) any significant crimes, that wasn't going to happen. So honestly, like seriously thinking right to the crux of it, HONESTLY, how were they going to keep her safe from a gang that had extremely long arms and almost definitely had insider informants in the police? Am I saying she should've jumped, no way, I can't answer that but I CAN see how to HER, it was her only way out.

Again recently (3 times in total) we have watched a case study for University for our assignment. Now I've been a clinician up until a few years ago for quite some time and even then I continued to deal with a great number of hurting people, some briefly, some for longer periods of time, some sporadically but the point is, I'm used to the stories, the struggles, the issues. It doesn't really trigger me or get to me. But watching this case study, maybe because I wasn't entirely in clinician mode (read - the alter part that does clinical work was not completely in or out to detach ourselves from what we were watching)....and so I felt very overwhelmed...once I was sent home by my tutor, once I sat with a few tears streaming quietly down my cheeks in the dark. Why? Because that is MY life. Not all of it, I don't have children to care for (thankfully - I LOVE kids and love looking after them but where I'm at in life right now is NOT a good place to be a mother) and I've never done illicit drugs (or smoked or drunk alcohol for that matter) but as far as the housing, the poverty, the stresses overall, the mental health issues, even the rage that comes forth from the mother almost from nowhere....it all relates to me and that terrifies me. I'm thankful that I have general politeness and some education, I mean even if I can't work at least my brain has the benefit of that higher education....but being so horribly stuck in poverty, in not being able to cope because there is no way out, because you feel miserable and there is nothing to look forward to, just hurdle after hurdle to try and just SURVIVE, forget about actually living.

See I have two degrees, a diploma, two certificates, a masters and working on a second masters, i have life experience, I have work experience....I AM employable from an employers perspective....but my health (physical and emotional) precludes that and even if I CAN get back to working (which I do hope to accomplish), it will only be part time....I can't easily live with people (other than my mum and trust me we have issues, there have only been two people I could live with)...I'm hard to live with and I find it hard to live with others. But I cannot afford full rent and before people go suggesting one bedroom properties or bungalows, I"m not stupid(!) I have looked and the cost is not htat much different to a two bedroom unit. I simply cannot afford the rent, not down south anyway, even going into country and rural areas is not a given anymore. So I wait for public housing. I have to make decisions there too but it could be tricky and difficult. Should I be glad that we live in a country with public housing? I guess so....but to get there is near impossible path that is wearing me out.

Recently I wrote off my car. I should do an "ode to my car" because she was a pretty amazing car and took me on some pretty amazing journey's. At the end of the day, she was my ONE really safe place. I have one other place that I feel quite safe at in general....but sometimes just due to circumstantial stuff, I want to run clear of there....but seriously, no car, no safety, no safe plans, no safe guards, nothing. The issues leading up to writing off my car were hard enough but unimportant to what is here. My point is that without my car, life is all that much more difficult. It is hard enough ensuring enough energy to drive and focus etc, but now I'm relegated to public transport. For many people this isn't a big deal but for me, it is. I will be catching taxi's more for some appointments, but in general, it is too far away to take taxi's too often, I simply cannot afford it....so I CAN catch public transport, but like Thursday I did and it is now Sunday and I'm STILL paying for the ability to catch public transport. I also dissociate on public transport (mostly trains but some trams) a lot as well because its so rhythmical and constant, noise and visual wise....so I could end up anywhere. I guess its good I have GPS on my phone, trust me its gotten me out of more than one scrape. But there have been times I've "come too" (out of a dissociated state) right on the edge of overbalancing a platform at a train or tram stop....there are alters/parts that would like to suicide, that's reality....they have almost succeeded multiple times.

I can see the point of jumping. I have thought about all sorts of suicide plans and I have attempted suicide many times in the past....the reasons for "jumping" are increasing and for "surviving" are decreasing...its hard when you don't see a future or the future that you do see is darker than where you already are, if that was even possible. Right now, it is like we are in a hole and we look up to see the sun, to see the stars, the moon, ANYTHING and all there is is darkness because the hole is so low. But we also know there is no real way out of it. If we can't even use our skills, especially because we're not exactly reliable right now. There are so many things we're interested in or curious about....but we cannot turn them into anything because we're far too unreliable to do so....so we become useless and what is the point of our existence if we're useless? If we can't work (due to physical and/or emotional limitations and/or unreliability), if we can't volunteer, if we can't start up other things.....jumping sure does seem appealing.

What about just doing stuff for us? Maybe we can't justify our existence but we could probably stay occupied enough to maybe just maybe get some enjoyment back in our lives....and there are things we want to do and like i said are interested in and curious about....but some things are currently off limits, like our love of surfing....we can learn languages....but ultimately, we're at a point where we honestly feel that we need to be locked up in our house so that we cannot escape. We'd still be able to do damage but it would lessen opportunities to hurt ourselves and to hurt others....but is that really a life? Again....jumping sure does seem appealing.

So we're not planning to jump, we have a dozen suicide plans always going on but that does NOT translate to any intention to act on them and I want to be clear that we do not intend to act on these hurts and pains and frustrations....but we can understand why people do, we understand why we want to....we wish that maybe you guys can get an insight into why we might want to.

If you ARE struggling and want some encouragement or direction to support, have a look on our "Resources" page or send us an email at anameredith@gmail.com and we'll respond as soon as we can.

Silver linings and thankfulness

My own quote of the day...
"One day the sun will shine through through and I'll see all the silver linings of the clouds" - Telle Meredith

There are lots of things that go on in my life and honestly a lot of them are pretty darn crappy. So often it seems like one thing after another after another after another...It never ever seems to stop. it's draining and hard work. Imagine then if you had like 20+ people who had all of THEIR own issues as well....(and technically those issues are my issues, but that is still not how it is experienced by ourselves at this stage)...so that is a lot of "stuff" to try and deal with. It is overwhelming and it starts to feel suffocating that thtere is no way out and all is hopeless.

It's pretty easy to complain, its a bit harder to focus on how those negative things can be positives but its harder again to simply look at positives in the dark deep blackness. Today, recently, lots of the time, has been feeling pretty bleak and I don't have too much to write about tonight (not if you want it to be coherent anyway) so I thought I'd just write some positive things that I know about today. Remind myself that its okay to have both a good and a bad day at the same time, that its NOT a contradiction, its just what is and that's okay.

Some things I'm thankful for...
- I was thankful for the free cheese and garlic pizza thrown in with my home delivery Italian last night (especially seeing as I was using petrol money to buy it with! - Don't get me started on the fact I know I shouldn't be eating bread, or garlic OR cheese! lol)

- That my tutor today could see how unwell I was and understood why I wanted to stay in the class but she was going to do everything needed, but she was ready to send me home, she cared and showed compassion....it is amazing how healing genuine compassion is. Clearly this is different to people saying "How can I help you?" Then they run at the first sight of trouble! Whereas those who mean it stick around to listen to the answer, don't offer idiotic suggestions and help weigh the checks and balances about decisions that need to be made.

- One of my friends was admitted to the RIGHT hospital. This is exceedingly important and just something I'm so thankful for (and so is she).

- I have a bit of an action plan for working through my research assignment at university which is a huge positive becasue it was causing me a great deal of stress (I still need to do the work but structure is a great start).

- I'm enjoying my surfing stuff as much as ever and I have a few surfing dates for the future. I love the community of women (and men) that participate in surfing. Very easy going and fun, usually hard working, but overall, at least at a more surface level, quite accepting of whomever comes their way. Why WOULDN"T you want to be in a community like that

- That the concept of surfing has become the strongest war I've ever had against the eating disorder thoughts. Its not as straight forward as, "You have to stay healthy in order to surf," or "You have to have some body mass in order to not get too pushed around by the waves," BUT those things DO come into play and they do help the warring inside...the negative is that there is more warring then there way.

- The anticipation of competitions....such as I ran a competition on a facebook page and a twitter page and it was fun! I am in the draw to win a surfboard to surf with (oh how much do I want to win that!), I am in the competition for some art stuff and vouches, would be awesome and handy. I don't rely on competitions to survive, but they are fun to help build anticipation and excitement, be a little kid for awhile.

Fighting on

This post has been ruminating in my mind for about a week and still it doesn't feel like its in proper English. This week has been good and sad for me. Good because I met a new friend and I got to go down to an international surf carnival! The bad side? I had to come home before the competition even started and due to my ever failing health, I could not go down on the main day that the women were competing....I missed almost the entire women's competition. Sure I watched it online (falling in and out of sleep) but I had wanted to BE there and this was with drooping eyelids, chin splints so bad I couldn't flex or point my feet (I still can't), an aching body that I knew would take the wind out of me every time I climbed the stairs...in spite of all that, I want to be there.

This is my life. I fight hard for the things I want and for the people I love. If you want someone that is always nice and gentle and comforting, then I'm probably not your person because I will fight hard for what I honestly think is best for my life and my friends, really hard.

I have had me/cfs for over 21 years now, I have had chronic pain my whole life, I have had an eating disorder in some form or another for almost 25 years, I have had DID for probably about the same length of time, maybe longer...I have lived through use and abuse of so many types...things don't come to me very easily. The thing I find the "easiest" is academics, I have a partially photographic memory (which is getting more frayed with time) and academic concepts and working hard appeal to me. I have two degrees, a diploma, two certificates, almost two masters and umpteem professional development related certificates. I have competed at the highest level of Trampolining in Australia, qualifying six times for National Championships...some of those I competed on broken toes and pulled and torn ligaments. I don't do anything half hearted or easily. I work my butt off for what I achieve. The craziest thing I've done is two entirely separate degrees and a diploma and work 6 x 10 hour days a week...all while having me/cfs. That is insanity and not something I"d recommend. Another crazy thing I also did five masters level subjects, plus starting a research project, plus undertaking a specialist project with an eating disorders organisation back in 2008....needless to say by the end of the year I was a wreck and a half, I've never quite recovered.

Are you getting a picture yet? I fight hard for what I believe I should do and what I want. But what about people hey?

If you want to be my friend and want me to love you, then I probably will! I don't give up on people, I just don't. It's too hard to give up on people....but by the same standards I'm not just going to let you skim by me and get lots of support and hugs and stuff when I think you're screwing up and could do something about it! Like I'm going to behind the scenes kick your butt and tell you what I think you need to do! That is going to be different from person to person so never try to get together and compare yourselves because everyone is different and everyone needs a different approach but regardless, I will love you far more than the friendship itself, I'd rather you hated me and got what you needed and became a better person and a happier one at that, then worry about whether you like me or not. It's not easy to enact tough love, it has a price and there are usually tears my end but that is how much I'll love you. You are worth fighting for.

But in saying all this, in all I've fought through and stood up for...I struggle with one thing...that is ME. I hate being sick, I hate being held back and I hate all I"ve been through...and so the one thing I tend to give up on (and seriously the only things I've given up on are my honours year - I couldn't get out of bed and I've given up a few jobs) is me. I have attempted suicide to a point that it is more times then I can count now. That doesn't make me a hero, there is no way medically I should be writing this to you...if anything it makes me a lucky fool. But the hardest person I think it is to keep going for is ourselves. I need help right now, just general encouragement that I matter, but its up to ME to ask people for that help and up to me. I know that when I'm alone, like the song (below) that it is so much easier to see the walls closing in and shutting the possibilities out...its a dozen times harder to fight on.

We all need to both help people and be helped by people. I've been helped by you guys, I"ve been helped by girls I help, I've been helped by professionals...I've also been helped by clients, by kids, by my fellow students, my family (for good and for bad), so many people....it might come in a song or a book or some words or the quiet winds through a park, or the beauty of the waves crashing on a beach...whatever you need, find it so that you can keep fighting on.

For right now, the main thing we need to do is....stand in the rain.

(Please email me at anameredith@gmail.com if you need support and I'll try to point you in the right direction or if you need, just listen to you. - Anya)

Stand in the Rain - Superchick
(Not the original music video - http://www.youtube.com/watch?v=7dcjtCL1Kpo )

She never slows down.

She doesn't know why but she knows that when she's all alone, feels like its all coming down

She won't turn around

The shadows are long and she fears if she cries that first tear, the tears will not stop raining down

[CHORUS]

So stand in the rain

Stand your ground

Stand up when it's all crashing down

You stand through the pain

You won't drown

And one day, whats lost can be found

You stand in the rain

She won't make a sound

Alone in this fight with herself and the fears whispering if she stands she'll fall down

She wants to be found

The only way out is through everything she's running from wants to give up and lie down.

[CHORUS]

So stand in the rain

Stand your ground

Stand up when it's all crashing down

You stand through the pain

You won't drown

And one day, whats lost can be found

You stand in the rain

Realisations of the health kind

**Please note that this is quite a bit of venting and frustration here, it is certainly not what it would be hoped this type of post this blog will consistently have, not because there is any shame, but simply because its quite intense and personal. Plans to return to more informational posts soon!**

Struggling to juggle University study with having ME/CFS and trauma (and whatever symptoms that brings with it) is starting to radically take its toll. CFS is the WORST name for this illness, if you think its just about being tired beyond the point where tiredness could remotely be considered something called tiredness (trust me, ME/CFS fatigue is NOT that nice type of fatigue that you get after a hard day at work, yes I did say NICE because you do something, you feel tired and you rest and you recooperate...with ME/CFS you feel more like a few 16 wheelers drove over you, then backed over you, then you got hit by a train and then someone decided that you had to be chased you for hours on that already absolutely exhausted state, then you might come CLOSE to the fatigue of ME/CFS....and that doesn't account for the dozens of other symptoms related to ME/CFS, its not just about fatigue....) anyway, today I was up at 4am to start studying and working on my assignment. Why so early I hear you ask? Aren't you tired? Shouldn't you sleep in?

Well see I have found that if I allow my body to go into a deep sleep (which seems to occur around 6am-7am int he morning) then I am useless for the rest of the day. I can go to the toilet, maybe watch some tv (on my computer) maybe even talk to someone for a bit, but I'm pretty useless in the thinking department. So I need to wake up after I've had some rest in the dark and quietness of the night but before my body can go into the next stage of sleep. So I wake up early and study and rest in the afternoons (sometimes in the morning AND the afternoon). It works, in the sense that with medication interventions and this routine, I can just get my uni work done, usually with quite a few tears.

But I'm struggling more and more and more, everything is getting harder every single day. When I'm very unwell I start to get swelling over my body, which ironically makes me typically look healthier and more awake then I feel! How is that for fairness! But my mum knows the clues...she looks for blue around my mouth. Basically the more tired I become, the more cyanotic I become. I have proven this in the emergency department time and time again as my sats will drop below 80% but I'll be sitting up and talking, or at least staring into space....nothing to indicate that my sats are so very low (and no its not me wiggling my finger on the pulseox machine!). Today, apparently I was blue around my mouth, down my chin, up my cheeks and all around my eyes! This is pretty extreme. It is only week 3 of university and already I'm getting extreme cyanosis, this isn't good. This is of concern and yet I have NO idea how to deal with it.

I know that with ME/CFS that oxygenation is problematic at a cellular level, even though its classified as a neuro-immune disease, the mitochondrial cells do not carry oxygen around the body properly because they're deformed (in a very basic sense)...NOT HELPFUL. I also know that many people with ME/CFS sit on the edge of heart failure when sitting up and standing up and when laying down have the same capacity as normal people who are sitting and standing....and given my heart is already struggling with the prolapse and tachycardia, this really isn't a great combination of unfixable symptoms.

So I have some understanding whats going on but I have no real idea what to do....I feel like I'm slowly killing myself and there is nothing I can really do about it. When I say slowly I do mean slowly, very slowly...but its uncomfortable and difficult and unpleasant...I want to get through university, I want to complete this course....but how I just long to hibernate.

I know that trauma symptoms can also be adding to all this, but so much of me wants to hide from all that too, like if the DID was protective, why am I screwing with a protective system? Maybe I SHOULD hibernate and just do what is absolutely essential for existence right now. I don't know. Know answers but I seriously do not feel okay...I feel odd...things are wrong, things beyond my understanding and things that make me want to hide out of sheer desperation. What a mess.

My recommendation to you, don't get ME/CFS, don't get DID...and if you do... be super careful and don't push the envelope to hard, the payback is an absolute bitch.

Tears and Sadness

In what is perhaps a direct contrast to my last post, this one isn't so happy, it isn't very philosophical, its just some raw emotion...if you're not up for that, stop reading now, that is fine if you're not, look after yourself!

I'm struggling...on almost every front...here is my list...

- I'm so exhausted on a continual basis, I just don't function really anymore, this is scary
- Because of my exhaustion and pain levels along with trauma issues, my ability to study at Uni is compromised. Do I think its possible to get through semester? Yes. But do I think it will only happen with a copious degree of tears and breakdowns? Yes again.
- My pain levels are starting to creep up again. I haven't increased my medication but I'm getting less functional in that way. I was hoping my fitness regime would help, but I barely have energy to stand, let alone exercise - I haven't given up, but its definitely proving to be difficult.
- I'm sick of not having permanent housing. Yes I have a place to live for the interim but there are so many hoops to jump through and the location is GREAT but the other people in the program and the program itself is just super tricky. I want my own house where I can have a strict routine and maybe have a bit more functionality in my role.
- I feel like a failure because I can't do what my treatment team want me to do, its not their fault, its all mine and its driving me crazy
- I'm overwhelmed by how unwell I feel and wonder more often then I'd like, "What if I keep just getting worse?"
- I hate that I panic when I leave the house
- I hate that inspite of my faith, I still struggle with living
- I hate that I'm always scared of being grabbed from behind...again
- I'm scared that IT will never stop (it being trauma related things)
- I hate that I can't escape my own mind and the images it brings to me
- I hate all teh time I lose and cannot piece together...I hate it even more that I find this entirely normal
- I'm stressed about financial related things
- I want to surf but I can't even stand up for more than a few minutes at a time
- I cry, a lot, today every 30 or so minutes leads to tears - I don't like crying
- I miss my friends but I'm so exhausted that seeing them is also overwhelming in itself
- I'm aging again very soon (well okay we're always aging but this is a concrete change in number) and I feel like I'm useless and have done nothing with myself or my life
- I hate mental health issues like the DID and eating disorder stuff
- I don't trust myself or my temper anymore - I go from normal to outta control so very fast, it scares me
- Why does everything have to get worse before it gets better?
- I honestly think that if i had a reliable car, a steady GOOD place to reside and I had finished my MSW, I'd be a lot better off.
- I hate that I can't follow through on everything I want to, its not fair and it lets other people down.
- I hate that there is no real cure for my sleep, that its long term and screwed up, my fault again
- I hate that doctors can get away with so much and can literally control what is and is not possible for me
- I hate that people try to talk me out of things that ARE my fault. THey like to change things to responsibility or just flat out say its not in my control....irrespective of what terms are used, *I* feel like I'm screwing up and things are my fault and I can't fix it... it upsets me.
- I wish people could better understand how awful I feel and how scared that makes me. I try to be rational and reasonable and even doing that....well here I am crying again.

I'm not okay and yet there is really nothing more or less that can be done to fix it. It just upsets me though. It really really upsets me. I don't feel good or safe... (I will be, I just don't feel it, very different things), I don't want to dump on everyone but I don't know how to continue like this...I guess I will, even if its in a hazy blur...but thats not cool either. I've lost so much of my life like that...I want to either LIVE life or die and I seem to be extremely stuck in the middle :(.

The song for today.... One I"ve loved for a long time, one that reflects all the pain right now...mixed with a bit of hope. I hope you like it too.

Broken By Lifehouse
http://www.youtube.com/watch?v=pmey1k7WXdc

The broken clock is a comfortIt helps me sleep tonightMaybe it can start tomorrowFrom stealing all my time
And I am here still waitingThough I still have my doubtsI am damaged at bestLike you've already figured out
I'm falling apartI'm barley breathingWith a broken heartThat's still beating
In the painThere is healingIn your nameI find meaning
So I'm holding onI'm holding onI'm holding onI'm barely holding on to you
The broken locks were a warningYou got inside my headI tried my best to be guardedI'm an open book instead
And I still see your reflectionInside of my eyesThat are looking for purposeThey're still looking for life
I'm falling apartI'm barely breathingWith a broken heartThat's still beating
In the pain(In the pain)Is there healing?In your name(In your name)I find meaning
So I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm barely holding on to you
I'm hanging on another dayJust to see what you will throw my wayAnd I'm hanging on to the words you sayYou said that I will be okay
Broken lights on the freewayLeft me here aloneI may have lost my way nowI haven't forgotten my way home
I'm falling apartI'm barely breathingWith a broken heartThat's still beating
In the pain(In the pain)There is healingIn your name(In your name)I find meaning
So I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm barely holding on to you
I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm holding on(I'm still holding)I'm barely holding on

Dissociation

This afternoon, I got out some forms that I had to submit to the Department of Health a little while ago. I had to give professional answers to a list of questions. I thought that I should read what was written....I did not write those answers....well I, the body of Anya, did but not me...no that is Ana's handiwork. I don't even have any memory of it to be honest. Some of the answers are really really good! As a result we're going into the Department of Health on Thursday to discuss this whole issue. I'm concerned that we'll get in there and won't know what to say, Ana knows that stuff she wrote about and its very coherent and useful...but the rest of us don't. See there are about 24 of us but us, I'm talking about the number of parts/alters/personalities (whatever you would like to call them) that make up the core person R. We all have different roles and functions and sometimes (well no, a LOT of the time) we lose a lot of time.

Sometimes when we lose time we just stare into space, very rigid and still, unmoving for hours and hours on end, we "awake" with no memory of it. Other times different parts come out at different times to do different things while the rest of us remain kept hidden away. Sometimes we watch, sometimes we help and other times we're just not there. Do you know how disconcerting it is to arrive a day or two or a month later and play catch up on all the important things you've missed? It's tricky.

Tonight has been like that. I've been fighting to get out to write for ages, especially since we discovered that these answers were written by a different part of us. Now a few of us need to do homework in case for some reason she won't be present at the appointment. But hours have passed. In some ways I think this is normal, everyone loses time at some stage in their life, be it they lose 10 minutes driving and realise they haven't been paying strict attention to the road rules, or they tune out in class and don't hear a thing a lecturer says, or they get preoccupied by something they're doing and wow all of a sudden 2 hours is gone. That is weird and hard enough in general...but for MOST people it is still their one core person that has been interacting in that time even though they don't really realise it. For us...it could be any of us or any combination of us at any time...that makes life really really tricky a lot of the time. We've become pro's at responding to the host's name, we've been excellent at using logic to catch up on conversations, or at the very least to nod and smile....but in between times "out" there could've been a dozen or so different parts of us doing things.

We have such strict routines about where to put stuff about how to take our medication about who can and cannot drive...things that we just DID over time because otherwise everything goes missing and that's a pain. As it is every night we lose the remote control, EVERY SINGLE NIGHT, needless to say it doesn't have a permanent home yet which is part of the problem. But even with all this, there are so many gaps and so much confusion.

Essentially Dissociative Identity Disorder comes about as a result of severe trauma at a young age. The brain and the body cannot cope or process the trauma at that age and thus in the susceptible individuals, their brain splits off the trauma....but instead of that being the last thing that happens, the brain develops different identities to fit around the trauma. So like me, I don't experience trauma particularly, I help to provide professional help to people but I don't remember ME going through any major trauma (unless you consider being yelled about by parents of clients traumatic  which it could be, but not quite on the same league as for DID)....so that is how I can do this blog and write what I do with clients...but there are other parts that won't sleep for fear of being hurt, or want to die because they can't cope with the pain very much or just want to be held and looked after like the little child they might be. So it gets confusing, we get told a lot that we are not individual people, but that is not how it feels or what it is like. We each have our likes and dislikes, we each have people in the "system" (ie the body/brain) that we do and don't like, we can often talk different, and present differently, especially if you're paying attention. I cannot necessarily remember what another part/alter/personality has done, and neither can they necessarily remember what I have done. It's confusing, its a mess.

Right now something coherent would be good, but everyone is so scattered and scared that we cannot see each other so much. We come out for however long, disappear again until we're needed again. I don't know when things will be normal again. We have really nice people that look after us and we're very thankful for them but its still very tricky when you never quite know how long you'll be around for.

I guess I should say that even though I oversee this blog, it's not always me writing! I'm not going to be nice and tell you who is and who isn't either, you don't need to know that. But realise that sometimes if you see an opinion that seems at odds with something else we've written, perhaps its another part/alter/personality with another part of the story. We also need a lot of grace for all the things we forget because we're no longer present until after key events, we need a lot of grace for being annoying when we're switching between fragments of ourselves, we need a lot of grace for all the things we forget because you told another part of us and they didn't pass on the message (and usually they don't even know to pass on the message or how to). We need a lot of grace period.

Finally, at a seminar we once went to, the leader said that people with DID do not have fully comprehensive personalities....they are only ever part of the whole, together all the different parts/alters/personalities make up the whole and they can really only function as a whole when they're working together or "fully integrated" to make things happen....in the mean time, its like working with 1/20th of who you are all the time, that is seriously impairing to many of things in life!

Insomnia and hypersomnia

For a very long period I've suffered with insomnia and hypersomnia. Its incredibly frustrating. If you don't sleep night after night after night, you learn to adapt and as frustrating as it is, you put things into place to get you through the night. Similarly if you sleep for way longer than is normal you can also put things into place to get yourself through, like making appointments later in the day, going to bed earlier. But what do you do when you suffer from both? That is me.

With me/cfs its pretty normal to not sleep well at night and then end up sleeping throughout the day. I think it comes down to not having as much stimulation at night and thus it is easier for the body to stay awake. For me this is further complicated by the DID which leads to parts being hypervigilant and staying awake even when I think I'm asleep and for parts getting up and doing things in the night while I think I'm asleep. None of this is helpful to a good nights sleep. I can't plan. It doesn't seem to matter how much sleep hygiene I employ, I still can't sleep regularly or consistently and right now....it's driving me crazy!

I'm so very very tired and I want to sleep, I NEED to sleep. I was put on bed rest on Wednesday and really I didn't start it until Saturday so I still have a few days of bed rest to catch up on, probably more because I didn't do so when I was told. But I can't sleep! I take medications to help me sleep and I still cannot sleep :(. This is driving me crazy. I hate going out during the day because I'm too tired. People who catch public transport to me, well they have SOME energy, maybe not lots but they have some, why? Because I can't do it. It makes me so much more sick then I already am. I can barely even walk 20 meters at the moment without wanting to pass out. All of this makes me tired. I know i have multiple illnesses that can account for all this, I know its not going away anytime soon. I know I'm going to continue to have nights where I don't sleep at all, nights where I don't sleep until 7am and nights where I'll sleep for 16-32 hours straight without the aid of medication (no joke)! I know that I can't pick these nights. I know that it doesn't matter if I nap in the afternoon or if I don't....none of it changes whether I feel like I'm going to collapse from sheer fatigue that is beyond just being a "wee bit tired"....most of all none of it changes the frustration I feel on nights like tonight where holding my body up to even write this post is causing so much pain and so much fatigue but laying down is driving me batty.

I don't know what to do, I don't know if there are answers, I'm leaning towards a "nope" in that department for now....but I know that I can't keep doing this. I need rest. My body needs rest. I need REAL rest too, where not just me but all the other alters/parts also rest. I need it to be consistent and helpful....I need to know that I'm going to go to sleep and I'm going to cry out of sheer and utter frustration. And this is just one thing that I'm dealing with right now, there are far too many things to list, FAR too many. I just think that some of those other things might be a tad easier to exist with if I could get some damn sleep!

Overtired 3 year old

I'm so very tired, I've had my medication, I should be asleep....but no, I'm tossing and turning like a crazy overtired 3 year old. So very frustrating. I went and woke my mum up and told her to fix me, the  minx, she turned over and said she couldn't! Oi! How is that for motherly love :P (What on earth she could do is beyond me but I'm ignoring that in my current state)....I'm talking with a friend who is ever patient and kind to me but I'm never a good friend when I'm in this state. I don't like being in this state at all, I like sleep when sleep is due. That's just it though, there are so many things I can't do.

I was told my by psychiatrist last week that I have very "if, then..." Thinking, which I agree with. And that instead of focussing on what I canNOT do, I should just work with what I CAN do. So I'm going to start to do bits of art with my psychologist cause I think I can do that, I'm going to still with this medication regime and hope it gets better, I'm going to try and somehow work on a process of recovery from trauma because I'm scared I'm going to overwhelm my friend with kindness from all the different alters/parts when she visits next week! (They know she's coming and they trust and like her, so she could get hit with rapid changes and lots of people trying tot alk to her all at the one time, thus overwhelming and confusing her! Seems very unfair to me.) I want some control back and that means talking about things that I really would rather NOT talk about, experience or feel in anyway....art and talk...I can do all this right? Focus on what I CAN do and not on what I CAN'T do. It feels very similar to what we were told when I worked in a call centre.

Sigh I don't know. I'm tired and rambly and I haven't written for days so this is what I'm like when I'm not drunk or high or anything like that but I REALLY REALLY want some sleep. Enjoy lovely people!

The red thread

Many moons ago my psychologist told me the story of the minotaur in the labyrinth in greek mythology. Essentially men would go into the labyrinth to fight the minotaur who would routinely come up and eat a woman from the village, but because of the labyrinth and the dark, they could either never get out and died or the minotaur found them and killed them. Then this girl, Ariadne, was placed in charge of sending in the people to be sacrificed to the minotaur happy, to keep the minotaur from coming and destroying the village. But she was in love with one of the sacrifices, Theseus and so this wasn't a great situation, no one came out of the labyrinth....period. So what she did? She made a very long red thread and gave one end to Theseus and she held the other end...that way he could always find his way back, in the dark, away from the minotaur...in this way he managed to overcome the minotaur and end the sacrifices constantly made by the town.

My psychologist gave me this story because he suggests that we need Ariadne's thread....for me. My life is pretty complicated. I have dissociative identity disorder (previously known as multiple personality disorder), i have an eating disorder, I have depression and anxiety, I have query agrophobia, I have ocd traits, I get panic attacks....then there is all the medical stuff, I have ME/CFS (myalgic encephemyelitis/chronic fatigue syndrome), fibromyalgia (FMS), mitral valve prolapse, tachycardia and other issues with my heart (including off and on long qt syndrome), I have electrolyte imbalances that make no sense, I have failing kidneys (yes that means I'm in kidney failure), I have gastroperesis, I have chronic issue with vomitting (and its not from purging - I cannot self induce vomitting), I have problems with my bowels and toileting, I get migraines that knock me down for 3 days....in the past 12 months, I've spent 5 in hospital...every day is a struggle. I'm not saying all this for sympathy, I'm saying this to say that my life just isn't straight forward and on top of all that, I DETEST being limited or held back and I am severely so.

Sometimes the labyrinth that is my life is so dark and so bad and there are different but definite minotaurs in there, ready to swallow me whole, ready to frighten me so I lose my way...but I need that red thread that even though its scary and overwhelming and I feel like I'm going to be attacked yet again at any second...that there are people that know where I am and can help me get out. It might not take a day or a week or a month, in fact I think that the red thread is long and complicated and messy and crosses over sometimes so that I go down the wrong hallways again and again...but while there is someone holding the other end, I have a hope of getting out, either here on earth or in eternity.

I'm lucky I have a fantastic psychologist, psychiatrist, GP, pain specialist, CFS physician, nephrologist, sleep specialist (who I rarely see anymore, in addition to the immunologist and cardiologist who I don't see anymore either). I have amazing friends that love me. Most of all I have a God that can see the back of this tapestry he's weaving and he knows who has what strings and what corners to turn to get me out of this mess.

I think a few more of us could do with Ariadne's red thread in our life....but that means we need to both ask for and accept help, not just professional help...but personal help, from friends and if we're lucky enough family. Read the prior post if you want more of my thoughts on that.

Therapy

So today I walked out on my session with my psychologist. It's a long story but for a long time now I've felt that I'm just taking up the time of those people that make up my treatment team and that I've barely gotten anywhere...it's been bought to my attention and I don't know, some things were said today and he wanted to see me tomorrow but by the time I consented....well I haven't heard anything back so maybe its too late. Do I just walk away? I don't know. What is the point in taking up so much space if things are not going to improve because *I* am incapable of improving them? I've been given an amazing team of people that are intelligent and caring and I feel that I"m just throwing it all away...not intentionally, I DO do what is asked of me and I'm incredibly honest about everything...but I'm still pathetic and not improving. But so far I've stuck with them not because I think its right or helpful but because I'm too scared to stop seeing them and live with the pain and hurt on my own... I'm scared that if I changed my mind and asked to go back that in all likelihood they'd be full and it would be an impossibility, besides why would they take me back if I'm the one that screwed up and left too early. I already know that there is no one else to see, no one else to try, so there is no point looking. I'm just confused and scared and I want things to change, so why does change seem so impossible?

Frailty

Today I realised the extent of my frailness. I saw my psychiatrist this morning and that was difficult, very difficult for reasons I don't want to explain on here...but dealing with DID (dissociative identity disorder) is hard! And that's with an amazing psychiatrist that has a clue. She doesn't really seem to get much of a clue about my pain though...fairly sure both she and my psychologist just think its trauma psycho-somatic pain and i think SOME of it probably is but a considerable amount is not because if i repeat the same patterns I get the same result whether the DID is bad or not. This is causing a bit of conflict.

Then a good friend came a long way to see me, on public transport on a crazy hot 40 degree (so just over 100 F for those in the US) to come see me for about 45 minutes....so short because she knew i couldn't cope with much...and I'm meant to be helping HER...but I guess that is partly where my frailty comes in. With my psychiatrist we were ready to switch and yell and scream and throw a fantastic tantrum...but when our friend was here, we were so very quiet with so little to say. She was gentle and loving as ever and i AM glad she came...I'm just worn out on all fronts right now.

Worked out last night that since Christmas day (so 10 days ago) I've left the house to go with our cat, D, to the vet....she will probably be put down next Thursday if things don't pick up....but that was less then 2kms away and I was back home as soon as possible. Trying to deal with D's care led to a huge argument between my sister and I...I think in part it was emotional and part she likes to rewrite history a lot to suit her, but I know that I WAS emotional. Its made me rethink getting my kitten...because I don't think I can cope if she were to die before me...and I hate that humans can put animals down but not people....why are people so much more important? I guess in a non-emotional state I can answer that more rationally, but we've had D for about 18 of her 19 years of life...we're bonded.

So issues with therapy, issues with housing (that i haven't listed here), issues with being a friend, issues with leaving the house (i think i'm about a hair breadth off being given the diagnosis of agoraphobia  my psychologist has already suggested it...dealing with the imminent death of one of our cats, one I didn't get to see too much in the past 4 years because she lives with my sister not me (tears up darn it)...this is only a tiny bit and I don't want you to think this is whinging, this is just what it is...what this post makes me realise is how fraile I am on so many levels, physically, emotionally, psychologically, spiritually, socially...somehow we still seem to be able to do things that God has called us to do and I think that is simply because he gives me the words, the energy, the patience and the compassion and the love when I need it the most, even when I'm at my weakest.... in 1 Corinthians it says, "For when we are weak,He is strong" and why is this remotely important? Because all the glory goes to God and not to us. I know how frail my mind and body are but somehow my phone doesn't hit the wall every day and get broken (that'd be very expensive), i don't sit down and cry after every sms or phone call...and sometimes (especially middle of the night stuff), i just go back to sleep....I'm frail and I think God uses that to allow me to start to understand other people and to learn to LISTEN to other people (not to just assume what they're saying) and he uses it for his glory because we couldn't do these things without him.

Frailty isn't a bad thing if it leads us back to the King of Kings and teh Father of all heaven and earth.When we can acknowledge it, we can also get assistance to improve ourselves that doesn't mean becoming a world class jerk...but we can learn to live with our humanity and be less judgmental of others (something I'm definitely in the process of working on!), we can get through issues that ail us and/or learn to live with them (depending on the issues!). Frailty is hard because you want to just curl up and hide under a rock so that you don't have to face the pain and hurt of life, it leaves us vulnerable, vulnerability leaves us feeling unprotected and that leaves us feeling scared....so we try to avoid it altogether. Instead if we can acknowledge it, we could do things more passionately, and do things we enjoy and even better do things with the loving people in our lives that need to know that you love them, frailty and all.

The Green Form

So I've arrived at TDU. For the many of you that don't know what that is, its the Trauma and Dissociation Unit at a hospital in Brisbane...yep I fly up from the cold cold Melbourne weather to the, uh, struggling to be good and sunny, Brisbane weather. There are no other units like this in Australia or New Zealand. They work ONLY with people with dissociative disorders. The majority of people here have DID, Dissociative Identitiy Disorder, which is where one person switches between one personality to another (I'll explain more later, but please feel free to leave a comment with a question so I can answer them on a blog as soon as possible) but we do have some people that have PTSD with significant to severe dissociation. I'm of the first group of people, I have DID. DID is bought on by early childhood trauma and goes on for a very long time....in my instance about 27 years of my life...the first 25 being the worst.

BUT I'm not here to talk about the nuts and bolts of my disorder right now, I wanted to about paperwork and therapy! (In addition to homework and therapy and promises and therapy). So we have all these forms to fill in when we get to TDU, it can be slightly overwhelming...the most important of the forms is to hand in our menus so that you get dinner that evening! Most of the forms are standard, name, adddress, who pays the account etc...they have some forms that are meant to monitor your mood coming into the unit and leaving the unit...not that hard to fill out, but SHOULD be done with a professional present (but rarely is) and then the form of all forms, The Green Form.

The Green form (GF) asks questions like;
- How do you sleep?
- Do you wake early?
- Do you get dreams or nightmares?
- How do you damage with your sleep issues?

Believe me those are the easy qyestions... then we get....
Do you lose time? (If yes, explain)
Do you feel anxious or worried - explain
Then the dozey of a question, "Outline your system (all the different parts) their ages and their behaviours... they allow an entire page for this question and even only including very little details I still ran out of space!

So I go to the nurses station which I swear is in another state the walk is so far from my room (The dining hall is at least another country away - it is LITERALLY at the other end of the hospital and my heart no likey) and she is like, "Wow! This is the best filled in form ever!" Clearly she has not seen all the other green forms from my prior admissions.

This is what I wanted to discuss...I'm here to do therapy, I'm so far from perfect its crazy, I'm scared of screwing up everything I do, but I'm in therapy trying as hard as I can get, through all the super difficult stuff that results in tears, all the miscommunication that leaves me feeling isolated, theere are just so very many different ways that therapy can make you feel like crap...but honestly, what is the point of taking my flight across two states, away from my family and a number of friends and outside of my very precious routine...if I'm not willing to put in as much honest effort as I can.

So, I pick up the green form and carefully and considerately, I fill it in to the best of my ability. I know that MANY people here don't give much detail, they tend to just put "Yes." or "no." or "See last admission" and in many ways that is fair enough, but I figure that things also change and it would probably be better to be in their best interests to fill out the green form as best they can. I take time with the 'wretched' form so I can get the best help available to me.

See the thing is, aside from people who have mandated treatment, everyone is in treatment voluntarily and then comes the next issue...sure, we all have out bad times and difficult time and we ALL have times where we need a friends and/or family to help carry use along especailly between appointments with the professionals. It's OUR choice to be there (in therapy), we could leave at any stage that we want to, but we choose to stay in the hope that we take maybe 2 steps forward, or maybe even half a step forward depending on what is going on for us.

So why would we sabotage ourselves by something as simple as a Green form!?!?

For some people their "green form" might be sticking to the meal plan, or turning up to an appointment, or not lying to people about what we've done/not done, or not lying by omission. There's lots of things we do that mean that those treating us don't have ALL the information that is available to them at that time to help us. Now clearly, we don't necessarily know everything that is going on for us, I'm not talking about neglecting that but rather about providing all the information that we have at that particular time, I'm talking about taking your integrity back and being honest.

What is your green form? Why do you struggle so much to engage with it :)

Helping people

One phrase I hear a lot of is "You can't help other people if you're unwell..." I disagree. I think there is a LOT that you can do to help people while you're unwell, I think you just have to have balance between assisting yourself to continue on the road to recovery or the road of keeping wellbeing as best you possibly can balanced with helping other people.

My favourite book is "What Katy Did". It's about a young girl who tries really hard to be good but is a normal young girl and heedless and enjoys fun. It is set in a town in America in the 1850s. One day she is on the swing that she was forbade to go on...(You know that feeling where when someone tells you that you're not allowed to do something and so that becomes the very thing you want to do?! Well that was Katy!) But unfortunately her aunt had told her not to go on the swing for a very good reason, the swing broke and then Katy ended up breaking her back.

Of course in the 1850s the help for a broken back is quite different to today, but the result was that she was left in bed flat on her back in pain for a very long time. She was grumpy and unhappy and felt miserable which is pretty understandable given the circumstances. But she was blessed by a visit from her cousin (who was chronically unwell and unable to walk and do things also) who suggested to her that yes she would have bad days, but that things would improve and that she had one advantage that no other person in the house had...that everybody knew where she was. Because of this, she had the ability to give her time and her love to her family because they would always know where to find her, but to do this ideally she would make her room welcoming to people to come into and her disposition would need to be such that people would WANT to come near her. Her cousin taught her how to make her bedroom pleasant including nice nightdresses, nice quilts and nice ornaments extra around her room. She encouraged her to have her blind open to let the sunlight in and then to be patient and try to listen to her younger brothers and sisters when they came in to visit her (Katy was the oldest child).

It changed her whole outlook and she still had bad days where she snapped at her siblings and when she was in a lot of pain and fussy...but overtime things improved and she became the heart of the house, the place where everybody wanted to be. It also helped to reduce social isolation, something that is a big issue for people who are unwell...and there are many things that we can do through the internet to help people for those that can't deal with things face to face (more on this another day).

I have Myalgic Encephamyelitis (Chronic Fatigue Syndrome - which is SOOOO much more then just being tired, trust me) and chronic pain, mental health issues (including dissociative identity disorder, depression and anxiety), eating disorder, heart issues and mild/moderate kidney failure...if you want someone that is unwell, its probably me! But I held onto the story of Katy and a few years ago when I had my own (2 bedroom) unit, I tried to make my place a place where people could come and just stay and have some peace. Sometimes they wanted to talk, sometimes they didn't...but irrespective of all this, it was something that I could do fairly simply without too much effort but that meant a lot to the young women that had a second home to go to. Yep, I had bad days and sick days and difficult days...but I could still DO stuff to help people. I had one rule, that was that I could retreat to my room or to the tv without the person taking offense because if I did so, it was NOT about them, it was about me having some time out, and with that rule, I felt comfortable having people. Sometimes people just needed a safe place to crash where they knew someone was there for them IF they wanted to talk...they didn't always need to, but it was there. It worked well.

Currently I'm in the process of applying to volunteer with the charity Very Special Kids :). I'm very excited about this prospect. I've been honest with them about what I AM about to give and what I'm limited in giving and why. They may decide that I'm not quite well enough or stable enough to meet their criteria right now, and if they do, that's okay, but there are other things I can do for them that do not matter quite so much. But I'm putting myself out there. I've thought through carefully what I can and cannot contribute because I DO need to care for myself (which for me starts with appointments each week that include my GP, my psychologist, my psychiatrist, my worker where I live and hydrotherapy as a minimum), but outside of that I can do other things.

I actually think its really important to help others out. I don't mean to take on a counselling role when someone needs a counsellor and I don't mean that you need to fix people...but we can listen to our friends when they JUST need a listening hear or a shoulder to cry or or even just some distraction for awhile. We can do things like make meals for friends that are unwell, I've even had friends help me with cleaning which is such a blessing! There are so very many things that you can do to help just the people around you. Sure there are lots of charities that require assistance and sometimes a more formal structure helps people to help others and that's okay too. You don't need to save the world, but you can help out your little corner of it. Little things can make a big difference to other people.

There may be times when some of you are in hospital or very busy with an intense program (like day programs or similar) and its also okay to say, "Right! I need to take a step back for a few weeks, few months and focus on this first and then I can go back to helping" and that's okay too, its important that whatever you do, be it an inpatient program or a day program or a volunteering role or just be a friend that you're able to do that to the best of your ability and sometimes things need to change, but if you explain to people that you're not abandoning them, that you'll be back that you're just focussing on a specific program or issue for a short while, then I find most people understand.

But what makes me sad is when people say that they can no longer be friend with more unwell friends because they are impacting the other persons recovery. In light of this, if you meet people through channels where you KNOW that they are unwell, please be careful of establishing a friendship with them if you're not prepared to essentially be there for the long haul because you can do more damage then good...it's okay to establish healthy boundaries that keep you and the person safe, but you need to be realistic and realise that if you walk away from them, it will hurt them and damage them. One boundary is to remember you're a friend and to encourage anyone with a health issue to get the appropriate assistance. But part of being a friend could mean going with them to the appointment if you're able to or talking to them afterwards so they can debrief. Again, there are lots of little things you can do as a friend to make a big difference without causing any damage to yourself :).

One final thing for anyone who is a Christian, I honestly believe that God will give us the strength to do the things that we believe he is calling us to do. We don't have much energy and as humans we are weak...if we are sick then we are able to feel that in a more literal way...but he has the strength. We shouldn't be reckless and stupid in giving more then is reasonable, but if we think HE Is calling us to do something, he will give us the strength to get through it.

I also have a general facebook page at the moment if you want to search under Anya Meredith so you can get information of when new posts are posted feel free to add me!

Stay safe, stay well, stay encouraged!

Introduction - Why the seven colours of light?

So... why the "Seven colours of light" well... I believe life is a bit of a spectrum and that in any one day, in any one moment, we can have a whole range of emotions, feelings and experiences that reflect those moments, activities and parts of time in our life. All light is actually white light reflected at different angles, a rainbow is the refracted light caused by glassy like objects that light shines through...so even though we all tend to shy away from the dark colours, the greys and deep purples of this world in search of the vibrant sunshiny yellows and warm pinks of opportunity that life brings us, it is all bought to as as LIGHT as HOPE...it is all the same at different angles, it is ALL a part of life.

Why the "wrong side of the rainbow"? Because my life has been a disaster zone! But I've worked with a lot of people in my life and I'm aware that man other people have lives that also reflect disaster zones too! We're not alone in holding onto hope, in trying to manage the daily issues that are multicoloured. I want to be able to think I'm wise and insightful....but well, surely my life wouldn't be quite as chaotic as it is if I had all the answers right? I just don't, have all the answers that is. Sometimes I'm arrogant, but I'm always well meaning... however, I'm on a journey of discovery and looking for my own "pot of gold" and whatever that may resemble in life. Most of the time, I feel like I'm the at the invisible start of the rainbow... the one where no one quite knows where the rainbow comes from (ignoring all physics here)... but such is life. I suffer with a wide range of physical and mental health issues that leave me reeling and often unsure how to proceed for the next hour, let alone the next day, week or month! But I'm honest, very honest and I bring with me not only my personal experience, but a hell of a lot of study and training with a background in social work, mental health and research.

My health has left me oscillating between life and death, good and bad, hope and thankfulness and despair, anger and frustration... I'm human in a netherworld. I started writing blogs about 4-5 years ago, chat rooms and message boards further back then that... I started this blog because I wanted to talk about real things and generate discussion. I don't want to antagonize people and I don't want to just vent all my frustrations to the world (there are better places for me to do that), but I do want to write and hear your voices, I want to represent those that are too quite to represent themselves...most of all, I want to try and bring some hope and perspective to people who are maybe sitting on the wrong side of the rainbow and trying to understand how this life thing all works out! So we'll see how it unfolds, but whatever I do, I definitely want to demonstrate that life is a spectrum of colours, thoughts and opinions. That they (differences in the colours of life) CAN exist together and actually together make up something more beautiful then the colours on their own.