My Bed (From 1st October 2006)

I wrote this piece after I had been rendered bedridden for months. I was vomiting like 6-8 times a day (NO NOT purging, just what looks like a problem with me/cfs or cyclical vomiting syndrome), I was crying every day in severe agony, I couldn't really drive so I relied on other people for many thing, but things at home weren't good and the hardest bit was that I had to drop out of doing my Bachelor of Theology (HONOURS) - I had an open invitation to return to my honours program at any time but so far that is still on hold. It is one of the very very few things I've had to walk away from :(. So what I wrote below was the outcome of months of being stuck in bed feeling like I was dying....and having so so many people think that having time to just "laze around in bed" is a good thing. Honestly? If its a Saturday or Sunday morning and you're having a quiet sleep in, or reading a book in bed, that's great! If you're relegated to your bed (or the vicinity thereof) for an unknown length of time....especially if that "time" might be forever on earth...its a whole different ball game. Hopefully this makes some sense.


My bed

My bed is a king single, it has wrought iron ends with what i think is stained pine posts (although the look is not dissimilar to a good mahogany). I have a blue doona cover, dark blue currently because its in the "winter" months, but this will shortly be changed to light blue. I have deep red (crimson) sheets, 1 fitted and 1 flat. I have a pseudo mink blanket with a dolphin on it folded at the end of my bed, it was a present and i quite enjoy it. But i am too hot (continually now) to have it on. I have an eggshell mattress on my bed these days primarily because it helps my hips as they hurt so much from the bones digging into the mattress. I have FIVE (5) pillows on my bed three of which are normal but made to shape into a v, the other two which are corner/triangular pillows but i lay out so that i don't hurt my shoulders and my neck so much.

When in my bed, i tend to lay on my sides (in the foetal position), on my stomach with one of my legs tucked towards my chest (in which case i don't use any of the pillows but rather sleep under them), and sometimes on my back. If i'm on my back it usually because i cannot sleep and am significantly frustrated, my back is killing me and hence i bend my knees (like if someone was doing situps), or i'm trying not to move for emotional reasons. Sometimes i lay on my back and cry, sometimes, I curl up and cry due to fear.

But you know what is so unique about MY bed? Is the amount of time i spend in it, particularly of late. It is SOOOO lovely to crawl into bed when one has aching joints, pure exhaustion after having accomplishing something, when you sleep late because you can but normally you have to get up early, or when you just lay there listening to the rain and the wind. It is nice to pray quietly in bed just before sleep and when i wake up. But it sucks to end up in bed because every time you stand up you want to faint and you don't know if you can make it through the day, or you stand up and realise you're legs cannot support you, or your body (legs particularly) hurts so much that with these things you are forced back to bed. It's not like when you have the flu and you welcome your bed for days on end. This is like frustration, where one part of you is ready to get up and face the world and the other part simply cannot do it. But what i've discovered over the past week, its even more frustrating when no part of you wants to leave the bed because of exhaustion alone.

I went out for awhile yesterday. I was lovely to see people whom i quite adore. But you know, sometimes i wonder if it's worth it...i get so lonely when i'm around people, but today, because i was out yesterday, i have been in bed all day. I managed to stand for 20 minutes to cook mum and dad's anniversary dinner (28th anniversary if anyone was wondering)...but then straight back to bed. That was the longest i was out of my bed all day. And not by choice. My sister and i had planned to go walking, we'd planned to go and get all the food for the dinner together...i wanted to get up and accomplish stuff around my room, i wanted to read some of my books. Instead all day i lived a half life of somewhat thinking (and the rest not being able to hold a thought together) and just having to stay where i knew i would be okay.

Everyone asks, "how are you?" and i answer "tired" or "sleepy" if i remember i answer "good" or i have something prepared that is positive. People only take the "tired and sleepy" lines for so long and they become immune. But i AM tired and i AM sleepy...i qualified for this disease so long ago and it's not improving, in fact of late i would say its getting to the worst its ever been (over a more prolonged period of time)...i am losing ability to function normally. I qualified for the disease and was able to say i was tired then...but now i'm so much more tired...how can anyone explain that you've been at a 9-10 for years and then all of a sudden you're at a 10+?? How do i answer their questions honestly? And even more importantly, if i answer "i'm good" to people then they think it's all over and i'm fine...i know this because of how they treat me and what they then want me to do! But i don't want to answer "tired" etc to everyone all the time, how depressing for them? What to do.

In a strange way my bed has become my friend. It is where i can rest, it is where i can sleep (sometimes), it is where i stay safe from myself and others, it is where i can cry, it is where i dream, where i laugh, where i pray... the only other place i have this is in my prayer journal...but even that is usually on my bed. My journal is the same type of journal A4 140 pages blue cover, metal binding...i use a blue staedler pen. Surprisingly (for those who know of my obsessive-compulsive tendencies with numbers and "things") i can vary the pen i use occasionally...but not often, its usually more out of necessity than desire. Anyway, Lamby sits above my bed ready for cuddles. He is pink but he is a boy, i've had him since i was born. NO ONE interferes with lamby. Toby (a stuffed large dog) sleeps on the floor at the end of my bed, he cannot sleep on my bed because cara (our cat) is scared of him! Cara is another regular on my bed. I don't think i'd cope if anything happened to her. She is a ginger female and gorgeous. Great personality, chats to me lots and comes in and cuddles all the time.

I love my bed...but i don't want to be in it for so long anymore. ...I never actually did. I love my bed, but it is boring. I don't know how much longer I can do this.

Notes: 

1. My bed has changed since 2009 and so does how I sleep, I MUST sleep sitting partially upright now or I can barely breathe and end up having to use ventolin to try and breathe a bit. 

2. This is NOT a symptom of depression, these are symptoms or myalgic encephamyelitis/chronic fatigue syndrome (me/cfs)...I often have desire to do stuff, but my body refuses to cooperate, I feel incredibly lazy when that happens. 

3. Dina and Cara (our family cats) have not resided with me since I moved away from my family in May 2008. They eventually came to stay with my sister and my cat Dina recently died. I miss her. I also miss Cara, the way she would just tuck herself up on my hand so she has human contact but isn't being smothered, how I miss them. I see my sort of adopted in my head kittens Mischka and Zoe much more regularly now and they come running when they see me....but I miss them all a lot. Bed can be a lonely place.

4. I DO do study and attend appointments etc. What people don't realise is that I do a lot of my study almost completely flat on my back (just with my chest slightly elevated for that whole breathing ordeal) and I put many things and people off in order TO study....but even though I know its not good sleep hygiene, I study in my bed, I read (when I can - when I'm too tired to even look at a computer screen, even for a TV show, I will just close my eyes and listen to an audiobook), and I watch tv in my bed.

5. I am now the owner of a rocking recliner chair. Some times when I am too afraid to sleep in my own bed, I will sleep on the rocker recliner and gentle rock myself to sleep, in so many ways, the couch is the alternate to my bed, but again, only when I'm well enough for it.

Getting the picture now? None of this is easy or good or fun. Hope it makes some sense. Feel free to ask as many questions as you like :)

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

Exercise

So as some of you may be aware, I'm working on increasing my exercise. It's a struggle. It's just so hard when standing upright, even SITTING upright, is thoroughly exhausting, let alone trying to do exercise. I have a plan which goes like this....working up to hydrotherapy x 2 per week, yoga (via DVD at this stage) x 2 per week, a walk x 2 per week. Then I have my strengthening exercises from the physio and I'd be working up to doing 3 rounds (approx 15 minutes each) of them x 3 per week and stretching x 3 per week. Then eventually I'd like to increase my play on things like my wii, doing stuff like getting dance dance revolution, using my wii fit, getting a surfing wii game and I also enjoy playing wii sports. Now all this is a lot for someone who is almost housebound and when IN said house is almost entirely limited to her bed and the couch! So it'll take time. I am struggling with motivation and also with energy in general. The thing that keeps me going? I want to learn to surf! Like I really really REALLY want to learn to surf, I want to get good enough to use a short board (which is essentially the type of surfboard used in competitions) and I want to do something I truly enjoy....that means I need strength, flexibility and balance, so I think my exercise plan is appropriate.

A problem though? One of the biggest problems with me/cfs is that there is a delayed fatigue response in the majority of patients. SO even though they may be able to maintain some energy after a day's exercise, if you retest them 1-2 days later their capacity is severely diminished. This is called Post-exertional Malaise (PEM). With me/cfs if you push your body too hard for too long (this includes mentally as well as physically) your body WILL crash, it WILL go past the tipping point and things will not be happy. When you're past that tipping point and falling failing over the edge of the cliff, there is no way to really get back up that cliff, or at least in general, not for a very long time. I worry that with my exercise (plus study and friendships and therapy) that I'm going to send myself not just tipping off the cliff but with a flying leap! I really don't want to get any more unwell, I don't think I could take it....especially when there is no end in sight (which there isn't really for me....I just desperately hope that doing trauma therapy will help to reduce additional me/cfs symptoms that are exacerbated by trauma)....but I REALLY want to learn to surf. SO I'm trying to take things very slowly and build up very very slowly and keep my aim in sight. I mean once I learn to surf (and an amazing friend is going to do the surfing camp with me so we can learn together!), if all I get is two waves before I crash in a heap that day, maybe its entirely worth it. To do something that (hopefully) doesn't lead to dissociation, is something I enjoy and is something that's not about being unwell or working or money etc so on and so forth.

But I was reading this article (http://www.occupycfs.com/2013/01/18/comparing-exercise-advice/) recommended by a very good friend of mine about exercise in me/cfs. Because my heart is almost constantly tachycardic these days (even when I'm laying down, let alone when I exercise), I'm pretty much already at the threshold of physical activity just from EXISTING! Let alone trying to exercise. The article made a lot more sense and didn't discount exercise...but on the same page didn't advocate for it the same way GET does (Graded Exercise Therapy - a form of treatment often encouraged by older school me/cfs physicians and in some circles where patients are not quite so unwell...but the studies I've seen are poorly done and don't have very many participants and thus anecdotal at best). See I think GET has a place at the right time....and we could argue that what I'm trying to do is a form of GET and I guess it is...but thanks to this article I discovered, other than my heart racing is giving me a work out as we speak, that also the type of things I"m trying to do are perfect for me/cfs sufferers especially the hydrotherapy and yoga! Yay go me!

ME/CFS is such a complicated illness and is complicated further by a great many other things. But it takes away so much from so many people. It's a hideous horrible illness. I'm doing 2 subjects this semester (although one is a year long subject) and I wonder if I'm even going to make it to classes regularly! I'm anxious to say the least. Then on top of that I want to do exercise! AND learn french (topic for another day).... I'm starting to think I'm being a bit ambitious...but at the same time, I think I need to try. Because resting plus therapy isn't quite working...I know that entire bedrest for cases like mine have anecdotal evidence of helping, but its COMPLETE bedrest which means I would need a very compassionate, patient slave (or set there of) to help me out. So I'm a bit mixed up about it all, but I do hope that I can get my yoga DVD (waiting for delivery) and start there...and just keep going as I can... I used to love exercise, even with the horrible pay back...besides, having more flexibility will help my joints and my bones, doing some weight bearing exercise will help my osteopenia and hopefully some of the bone pain (although the later is dubious at best) and more strength, especially in the core muscles, will hopefully improve my posture a bit (although I think as well I need to keep remembering about the Ambassador as well as not needing to become invisible and at one with walls also)...

I guess the thing is, exercise is important, in the right setting with the right help...lets hope this turns out to be a positive experience! I really really want it to be!

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?

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!

Suicide

If you have troubles with feeling suicidal please contact one of the contact places on the RESOURCES page and get some help. If you are in Australia and need urgent assistance, please call 000.

A few times lately I've gone to write about different topics and then I get a bit stuck. I don't quite know how to approach the topic I want to write about. But today something happened and I know what I want to write about. Today I had went with a family member to find out the results of a neuropsychological exam that she had had about a month ago. Back in 1997 she and I had a major car accident which resulted in an acquired brain for her. It was never properly checked or tested or followed up and this was the follow up, 15 years later. The neuropsych came back with good news, she was achieving average levels in all but two areas and those two areas made sense...so that's fantastic right? Well, no, actually. It left her feeling vulnerable and stressed and like nothing would change, that the depression she felt would remain with her, that she would continue to experience a tumultuous lifestyle that HURTS. I was watching her and saw the tears start and I interrupted. She managed to spit out that she was feeling the most suicidal she has ever felt (and trust me, she's had some near misses in her life).

After some discussion and some time, we managed to get her to talk to psych triage, which is basically a funded mental health service that deals with crisis management. That was positive. The poor neuropsych didn't really deal with suicidal people like this and was upset by the situation also (although she did a great job at remaining professional). But it is a wake up call. People can be hurting so badly on the inside and no one on the outside will necessarily know about it.

This family member is facing homelessness, extremely tight financial situations and has had to deal with abuse for almost 30 years of her now ended marriage. The mental health professional pointed out that she probably has PTSD (Post Traumatic Stress Disorder) after all the years of abuse. There are so many causes for why people want to suicide. Some people have been or are being abused (or have witnessed abuse which is often as deterimental as experiencing abuse), some people feel pushed to be perfect and there is no room for error, other people experience a depression so deep that all they want to do is go to sleep and never wake up, people with eating disorders have a high rate of suicide (approximately 11 times higher than the average) often from the constant nagging and push pull of the eating disorder, people in pain are THIRTY (30) times more likely to attempt suicide! Being in constant pain is horrible, it never ends and often is relatively unresponsive to pain medication. Can you imagine being constantly haunted by the horribleness of life? Wouldn't YOU want to attempt suicide too?

I want to write a few posts about this topic because its important I think. I think its soo easy to get angry with someone who is suicidal without really understanding the desperation behind the act. One thing I have learnt both from myself (I have attempted suicide 8 times so far in my life, starting at age 8, and planned it out or started to try many more times then that...) and as a mental health professional is that very few people really want to die. They tend to want one or two things...they want to know that things can CHANGE, that the horribleness they are experiencing is not going to continue...sometimes they don't even need to know when, they just need to know, beyond a shadow of a doubt, that it will change. The other thing many people want to know is that they're IMPORTANT. They're valuable and loved. Many people reach a point where they feel that society is better off without them, particularly those people that experience chronic illness (including mental illness) and chronic loneliness...they need to know that they are really truly loved and valued, that people would HONESTLY miss them if they died. They desperately need to know that it would make a major impact on the environment around them.

With suicide, we often only ever see the tip of the iceberg. Like my family member, she doesn't cry in front of people and its unlikely that other then my imploring to the neuropsych of the seriousness of the situation, that she would not have realised how serious it all was. People are good at hiding and if they've spent a life time being abused or trying to meet perfection or answering to the voices in their head, they tend to be good at sliding along the walls where they are easily missed and people assume they're okay. So I want to say, don't be afraid to ask. It is extremely unlikely that you'll place the idea of suicide into someone's head, but you might just give them the opportunity to open up and maybe just maybe, get some more help so that things can change for them and so they know that someone, you, care about them enough to ask them the serious questions of life.

Please, if you're feeling lonely or suicidal, reach out for help. I will continue to work on my resource page but if you need anything in the interim, please do not hesitate to email me and I will try and find someone to refer you onto. Please contact emergency services if you are about to or in the process of suicide. Your life is worth something, even if you can't see it right now!

Hugs

So I wanted to write about a topic that is perhaps a bit off centre, I want to talk about hugs! Yep, that's right, something as seemingly innocuous as two arms wrapped around another human body, typically in the form of comfort, namely a hug!

The other day I was sitting in the office with my psychologist and I kept saying that hugs were bad. Not just a little bad but very bad! Bad! Bad! Bad! In fact. I was adamant that hugs were bad. Now there has been many times that I have been hurt by people hugging me inappropriately and that could be a good reason to not want hugs, but for me, it was the fact that I missed having safe, comforting hugs.

See as someone who's suffered from an eating disorder and as someone who has worked with clients who've had eating disorders, it's very common for people with eating disorders to not want hugs. Why? Because they don't feel they deserve hugs! They're scared of hugs. Some are so scared that they'll start to cry and not stop. Other's like me, are afraid that they'll get some hugs and then that person will walk away from them and they'll have hugs no longer.

Also having a lot to do with trauma, some people are afraid of hugs because people have abused them in the past taking something that should be kind and gentle and used it for evil ends, hurting that person. Also, for those with dissociative disorders, people sometimes think that a hug will help bring a person back to being in a more conscious state...typically it just startles the person and often retraumatises them! I know people that cannot even handle a cyber hug over the internet, it puts them on edge so much.

Then as someone who experiences chronic pain and knows many people who experience chronic pain...it can physical HURT to hug someone. And yet, that person can crave touch soo much and long for a hug.

See so the idea of a simple hug, isn't so simple. Hugs can hurt, they can also calm us down and bring us love. It's just finding out the right balance and knowing who you can and cannot hug.

See someone with an eating disorder that doesn't feel they deserve a hug, perhaps that is exactly what they need and sometimes, if you're the right person and have the general permission of that person, you can force a hug which eventually relaxes that person and they can feel the love of a hug.

But as I've said, you need to be careful, because for those with trauma, forcing a hug can take away their space and their rights to determine what is and is not okay for them, something incredibly precious after having their body and life invaded in such a cruel manner. Similarly, forcing a hug on someone that suffers pain can leave long term issues that that person needs to deal with.

It's hard. Hugs are important. Some people need us to push a little harder, some people need us to hold back and basically everyone needs to check that its okay to give a friend a hug! Remember, they might not be able to handle even an online hug. It doesn't mean they don't love us, it just means they're suffering in some way. Maybe they're afraid, maybe they've been traumatised or maybe they're in pain. We need to be respectful and ALWAYS do what is right by that person first and foremost. All for a simple hug!

In the meantime...if you can handle it...

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.