Life and death and the inbetween

So I was going to write about singleness and marriage and I'll get there but I just watched a story and now I have two topics I'd rather talk about, one I've talked about before but needs talking about lots so you get to hear it again, the other is new.

I have this general philosophy that I try to tell people (when I feel the timing is right) the things I believe they should hear if I was given a death sentence. I don't want anyone to miss what is important and what *I* believe is my contribution to maybe what is important in their life....even if they don't need to hear it when I think they do, I hope that they'll remember it when it does become important. As part of this I set up a scrapbooking project to write some letters...the project is still underway. But just now I watched a video on a teenager dying from cancer and what he's learnt is important to him. It's a great video and I'll give you the link in just a second. He talks about how we just need to help people be happy. I kinda agree with that but I also think that really, here we do what we're meant to do....sometimes its actually not about being happy, sometimes its about just being a shoulder for someone to listen to, sometimes its about giving away a compliment to a stranger on a train (yes I do do that), sometimes it's just about living your life in teh fullest way possible whether someone is watching or not...you never know who is watching around a corner and the Lord of All is always watching from above.

When the earth was created, it was perfect. But we're told heaven is amazing, perfection complete...but its not perfection because it's got better trees or streets of gold or anything like that, its because the Father, the Son and the Holy Spirit reside there....yes they are here on earth but its different, there there is NO sun! That's right NO SUN! THEY light up the world. But because this earth was once perfect, even though its broken now and run by broken people (which we all are), we can still see glimpses of heaven and for me I think that comes from doing what we're meant to do in life, whether that's making people happy, being a light to someone else in a dark time, being a shoulder to cry on or just plain being an example of self love and acceptance (yes an irony coming from me - but I AM working on it).

A wise man once told me to not try to rush out of earth because earth is actually a pretty good place. Oh the irony. Now if this came from someone with no lived experience of darkness I'd probably just have ignored him, but he suffered depression, major depression, while in a different country, while studying the Theology of Joy (oh HIS irony in that!) But through his learning about joy, coming back to Australia, taking me under his wing and teaching me....I learnt that God didn't create me because he HAD to or because he got bored one day and thought, "Oh I'll create Anya today" he created me out of JOY. Not because I had to be anything in particular but simply because I was His, His joy - His joy on this earth. Now I get to live on this earth and my gift back to Him is to a) try to be joyful in all that is given to me and b) try to do all he calls me to, something I do struggle with. I don't know why God brings us into this earth before we go to heaven, I just do not know but I know that I need to stop seeing earth as the enemy and start seeing the good parts that are there as best I can, one bit at a time. I'm better at this sometimes then others.

I will say, having me/cfs makes me realise something though, as you watch Zach's video I think that he looks like he has so much energy and he has awesome family and friend support so it's easier for him. Easier for someone dying? Are you kidding me I can hear you say! But when you have NO energy and little family support it IS harder, it IS harder to be brighter every day and it IS harder to exist, to see the good stuff and to participate in life...but not impossible. I think sometimes we need to just change our focus a bit and not focus on what we can't do, which may be a lot but focus on what we can do....even if that is learning one french word a day! Or sending one short message to someone to remind them that we're thinking of them, loving them and care about them. So many little things we cna do even when we're exhausted, worn out or just too plain bogged down in the difficulties of life and/or physical and/or mental illness. We can all offer something, even if its truth, we can all ofter people a kind welcoming heart, we can all offer a smile even if its weak and difficult to produce.

After you decide whether to watch Zach's story or not (it's 22 minutes long), I have put in a video by Carrie Underwood. It talks about how we'll see people again. Part of the video indicates that we'll see people again in this life time like an appointment a dear friend of mine has in Haiti with a beautiful baby girl Alaine (check out OperationLoveAlaine on Facebook for more information) or whether it's when we see people again in heaven. You might not believe in heaven, you might be undecided....I can't say what hell is like, but I DO believe in a God that has the capacity to save everyone, even those people we do not think should be saved...I also can't say whether that will happen or not, I just am saying I believe in a God who has the capacity to do that and therefore we may see all our loved and lost ones again). I hope you enjoy it.

Anyway, here is Zach's story
http://www.youtube.com/watch?v=9NjKgV65fpo&feature=youtu.be

Carrie Underwood - See you again
https://www.youtube.com/watch?v=vTnWFT3DvVA

Lyrics...
"See You Again"
  Said goodbye, turned around

And you were gone, gone, gone

Faded into the setting sun,

Slipped away

But I won’t cry

Cause I know I’ll never be lonely

For you are the stars to me,

You are the light I follow

[Chorus:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

I can hear those echoes in the wind at night

Calling me back in time

Back to you

In a place far away

Where the water meets the sky

The thought of it makes me smile

You are my tomorrow

[Chorus:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

[Bridge:]

Sometimes I feel my heart is breaking

But I stay strong and I hold on cause I know

I’ll see you again, oh

This is not where it ends

I will carry you with me, yeah yeah

[Outro:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

Till I see you again,

Till I see you again,

Said goodbye turned around

And you were gone, gone, gone.

Delays in life

So for the past few years I've been living at a place called EPH. I spend time there and time at my mum's house. Ideally I'd love to have my own two bedroom unit but given I'm on the list for public housing, I'm only eligible for a one bedroom unit if I live on my own, but now as my mother is listed as my carer in a formal capacity, she and I can move into a two bedroom unit. However, my time for living at EPH has run out and now I need to find another place to stay put until the Office of Public Housing finds myself or mum and I a place to live. I've been waiting for two years already....I'm sick of waiting, I want a home. I want a perfect home. So really I'd rather be given a perfect home by someone who doesn't need to live there and a place where I can be at peace and I don't have to jump through constant hoops. Sometimes I want to get married, but not so I can be married but just so I can have someone financially support me and provide me with a house to live in! How's that for the idea of love! (I'll write more on marriage another day.)

So right now, I'm exhausted. I've just finished my university semester and after crashing my car, I'm left to public transport, taxi's and walking to get around which just makes me more exhausted really. But I need to pack up my room at EPH and move. Stressful much? Absolutely. I have two amazing friends willing to help do the heavy lifting and help me move. Both these guys are amazing in their generosity to me and just in who they are as people, so I'm thankful for their help. But somehow I still need to pack everything up. Not sure how to manage all this, I HATE packing and then I have to actually choose a move out date and cut my ties with EPH and just do it. Even though I'm not EPH's biggest fan, cutting the ties is still stressful, its like my safety net is cut. What if things go horribly wrong? And it is very possible that they will. How will I cope then? Where will I go? What will I do? I thought through some worst case scenario's already and worked out some plans....but they're not things I want to act on, especially coming into winter.

Then there is just all this stuff around living. I desperately want to start my new exercise regime....but its hard to just breathe. It's hard to leave my bed, let alone the house. I want to be good, I want to be fit, I want to be strong....but I can barely breathe. I'm sick of feeling this way. I'm sick of how fat and ugly I look, I'm sick of it all....breathing is hard work and yet I HAVE to organise all this other stuff, I HAVE to organise moving out and cleaning up rooms and space and everything.....and I just want to hide deep under the covers, be invisible...not need anyone, instead of my increasing dependency on people. None of this is great or helpful. Just so messed up. I want to be useful to people but I can barely even look after myself. I can pray for people and that's about all I do....pray and at least let them know (sometimes anyway) that I care about them no matter what and that I WILL do whatever I can within my ability to help them....even when I want to be invisible and hide under the covers.

I just have to exist somehow, I'm not sure how but somehow. So right now I'm sorry for the slow blogs. I'm just working on breathing and trying to plan at the same time. Step by step....

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.

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 :)

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.

Birthdays

So birthdays for me are tricky. I don't know quite what I feel or expect but I know its not really much that is pleasant. I have had some really good birthday's. My 25th I was super sick, basically unable to move from my beanbag, set up outside for my backyard picnic, but it was NICE and I enjoyed it. But there are a lot of crappy memories that come with birthdays too and a lot of blanks. As the years have progressed, so have the blanks. I used to be able to tell you many of the crappy things that occurred on or around my birthday...like the day we were celebrating my birthday and got the call a relative had died...definite buzz kill. (We weren't close but we were close to some of the rest of the family.) Fights, arguments, visciousness that remains intolerable to this day. Birthdays can be bad for our mental health. So my birthday is a mixed blessing.

I have a lot of very good friends...but also a lot of my friends are now parents, unwell, struggle with social anxiety, poor, over committed, so on and so forth. Then there is just ME. I love my friends but it is definitely easier in small groups or preferably 1:1...so how do I deal with that. Also I realised that you can't choose your health for your birthday. This year, I was alert for the first half and very much not so for the rest. I can't choose when I feel good or not and my birthday is on a particular day whether I feel fine or not. It was just tricky and so often I feel like I waste the day, or more so, I feel that I'm a waste of space altogether. I was certainly made to feel like that over and over again, especially on special occasions. It wasn't helped by the idea that if it was my birthday that I should get what I'd like (within reason) for that day...so when things go haywire or just plain abusive, how can I fit that in with my concept of reason....I can't and it hurts more than other days, other times.

I think as much as anything, I see my age and I look back and I feel like life is passing me by and I get stuck in two places. One I want to try and live and enjoy as many moments as I can and not try to skip over the hard stuff, not try to wish life away....but at the same time, life feels overwhelming and scary and hard and if anything I'm trained to escape those times into myself, into my little world...if I don't escape there the other alters/parts do anyway and I'm pulled in. Either way, living is terrifying. And so it keeps passing away and I see various opportunities ceasing to exist as a result, things that will never ever happen as I'm getting older and older and older and time is passing so very fast. I struggle with a very similar issue at New Years and Christmas Day....its hard.

Right now, I feel fragile, very fragile. I don't like it but it is what it is. I work through a plan to get through these next few weeks of university...while at the same time planning an escape plan...It's almost my default position to plan an escape plan...its not usually all that intentional, it just happens. I'm fragile because I'm tired and worn out, I'm fragile because things are so mixed up in my mind now that I can barely communicate to those who know me best, I'm fragile because I'm not confident that I'll get to where I want to without doing severe damage...I think it is my friends and my treatment team that help me most of all...living breathing people....it is for them that I don't feel like I age so much, in my fragile state I feel like I'm 17 years old, never growing....sometimes younger, sometimes ageless but rarely my actual age, but if i can get lost in a PERSON for awhile, then some of my fears don't seem to matter so much, especially the concept of age rushing past me.

I know a lot of people have troubles with birthdays. It took me a long time to even be willing to DO things to celebrate my birthdays and even then they tend to be more low key. But if you struggle with your birthday, I understand and empathise, if you want to tell me your story, I will listen, no judgement here. Know that you're not alone in fearing a birthday but also know that life can change and birthdays can become okay again....it just might take some time.

If you can't figure out Blogger and want to email me, the email is anameredith@gmail.com 

Take care of yourselves and thanks for listening

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

Amusement and smiles

Right now before I write there, there is one reader who I think is going to hold me to account for what I write here because that person doesn't get to see this side of me very much....but actually very few people do, even if they think they do, they don't see the real heart of it but here we go anyway!

I love to smile. I love to laugh. Not a little bit A LOT. But I don't, smile or laugh that much. Often I'm too dissociated or depressed and it leaves...you're more likely to find me smiling then laughing and when I do laugh its more likely to be expressed inwardly then outloud. You're also far less likely to catch me smiling or laughing around most people (there are a few to whom make me smile with ease, they are the same that have me on the phone in tears most often, I think they can figure out who they are). Now I don't hold back to be a downer or a pill, it just takes a really really long time for the silly side to be seen by others. So you're more likely to catch me smiling to myself as I walk with my ipod in, laughing and singing and dancing in my car or when I don't care about my surroundings on a quiet train platfrom, sitting in a bus, or dancing down a street to a sassy song.

I think the reason I don't laugh out loud that much is that so much humour is NOT amusing to me! I don't like vulgarity all that much. I like smart witty, clever skits that are fun and unexpected. I like to listen to irony of things. I, by nature, have a quick sarcastic side....I have to had on occasion, delibrately STOP taking the mickey out of certain people and I do it because how can some people that are so very intelligent and smart be so dumb?! Buts not always very nice and I"d rather be supportive then funny. But I sitll like to laugh.

I am highly competitive. You see my marks and realise just how very unwell my body has been when I accomplished them, if you see my study regime, you'll understand how competitive I am. I qualified for the National level trampolining championships SIX times, six years in a row. Amazingly my best event is synchronised trampolining because like my friendships in life, I was excellent at adapting to other people, their rhythm, their height, their moves...I was well known for managing to pull off crazy stunts in order to drop my height or raise it with just my peripheral vision to guide me. But the feeling of competing and doing well? SUCH a high, be it academically or in sports or debating (I'm an annoying good debater) or music or whatever....It makes me smile to see people do well, not just me, but to see any person do things of quality, these days I watch a lot of surfing and I see the top women in the world surf and I hold my breath as they take off on a wave and I may as well be right there with them! I get excited, I celebrate!

I love to see a good underdog story. I love the movie soul surfer (based on pro-surfer Bethany Hamilton) and movies like Cool Runnings (that might be a bit old for some people). I love to see people come back and work in teams. I get excited. And if you happen to glance in my window, you might just happen to see me dancing around or giving a fist pump or if I'm sick my arms jumping up and down! I just finished episode 16 in the current Grey's Anatomy where they find a buyer for the hospital (I don't figure that is breaking ideas, HOW it happens is maybe less expected but its obvious they won't close the hospital, there'd be no show!)

If I'm with my sister in my car, you'll see her change my volume to an uneven number then the playfight that goes on when I go to make it acceptable again (ie even numbers only)....if you see me and her in her room with the music turned up, you'll experience me dancing (something I learnt to do in a Baptist Church of all places - only people raised in the doctrine of the Baptist church would understand that Baptists aren't meant to dance! Seriously!).

I might be quiet and more removed in public but I love to laugh and I love to smile. For me in general that is easier on my own....often my little parts come out with safe people and are much more playful, if someone will play with them. If you hear me laugh out loud, I find something highly amusing because its unusual. If I'm rolling on the floor with laughter then I'm either very very tired or very amused or both! But its FUN.

One thing I know is that I can actually laugh and cry at the same time. I can be happy and quiet and content and seriously depressed at the same time. Maybe its easier for me to identify that because my personality tends to be so split up and fragmented, or maybe its just a realisation that I have...often I think people feel they have to choose which way they're going to allow their emotion to go. And that's not to say, I'm always like this, I'm not. But when the opportunity is there, I love it and I enjoy it be it last for 5 seconds or months on end. I think being able to find some things that we can keep onhand that we can go back to are incredibly important for our mental health, our physical health and just plain sanity!

Sometimes I think though, its really easy to be really stuck in a really dark place. It's hard. And its hard to find anything that will keep one amused. I can reflect on things I've done...but usually just having something that triggers those positive endorphins is really helpful. So I wanted to share with you two skits on YouTube that I love.

This first one "Stop It, Bob Newhart" I find hilarious. If you work in health or counselling you're more likely to have an affinity to it. If you have an eating disorder, phobia's or OCD, please don't take it seriously. Its just meant to be fun. It's certainly not this easy....but if you can put aside that and watch, you might just find that you laugh too!

http://www.youtube.com/watch?v=BYLMTvxOaeE

The second on works for me because all my parts can watch it with no stress in any way, its very short and very fun. It is best with sound.

http://www.youtube.com/watch?v=izqbzeoRneQ

I hope you enjoyed yourself! I hope it have you a smile be it inside or out, even if it is just for five seconds :) Be advocates for smiling, even when its hard, just try smiling at someone today, you might just find that they smile back and you both feel warm for it!

(PS If you have good skits, I'm willing to watch....I grew up on things like M*A*S*H* and Yes, Prime Minister etc if you're wondering more particularly what humour I like. I love quick whips and good visuals, be they done through yr imagination or on a screen.)

In YOUR best interests...

This week has been filled and frustrated me with the concept of determination of a person's "best interests". I've worked in the health sector for quite some time but I think it is even MORE illuminating having been a patient of the health sector for most of my life. After some discouraging feedback this week, I'm starting to think that often medical doctors hold more power over a person's life then even the Police force does. The Police force acts according to the law...the medical profession seems to use and abuse the law according to their own interests which they then justify as taking such actions in the "best interests of the patient".... when does it become okay to override a patients OWN values, knowledge, belief and TRUTH with a doctors own ideas and when does this give them the right to break moral and ethical codes of practice and even more so, the law? Seriously? When?

Mental health is an obvious area where this is a big issue, so often people with mental health issues are not respected very much because they cannot think "normally" and thus there are people that are able to take away all the rights that patient has! (At least in regards to mental health care....but in some regards, if a guardianship order is enacted then ALL rights are given to another party, not just mental health care!) But ironically, this happens in other areas too, like with physical health...I have illnesses that are not easily seen. In many ways I now amd THANKFUL for blood tests that aren't normal because at least its something on paper that I'm believed about...but it took time before that to be believed, even with specialists on your side, so many other people would not listen. I'd go to the emergency department to get treatment but I'd be treated like I was seeking inappropriate help when actually I was doing everything in my power to act appropriately and responsibly! ARGH! You can't win! But there is always a risk! If you're honest, you could end up losing everything because of the way a doctor or a health professional decifers that honesty....so many things can happen.... doctors have a lot of power and to me it seems, very little accountability.

They just have to say that they were "honestly" trying to act in a patients "best interests" and then everything is magically okay. But those "best interests" may leave a patient writhing in pain, sleepless nights on end, or extremely traumatised. Even the police will allow legitimate emergency phone calls to be CANCELLED by a doctor or hospital! Even when I can prove through logic that a doctor is not acting in a patients best interest, and that irrespective of logic, irrespective of a patients "best interests" some of the things that were done are illegal, they aren't grey, they are black and white....they aren't the Pirates Code which, if you watch Pirates of the Carribean is decided to be more of a set of "guidelines" then rules....they are legal rules and guess what? They are there to protect both patients AND staff and help everyone know what is and isn't okay....so when those rules are broken....how can it then be okay to say that they were broken because they were in the "patients best interests"? Umm, I'm sorry, but WHAT?

So this brings us back to the original question....when is something in a patients best interests, what tools do we have on decision making as professionals and what recourse do we have and what empowerment do we have as patients to STOP doctors (and relevant health professionals) from acting incredibly inappropriately? How do we hold them to account for their treatment suggestions and implementations? How do we ensure that all relevant facts are given and informed consent can be obtained? HOW do we ensure that a patient gets the appropriate treatment without the prejudices of a doctor own self-opinions? How do we ensure that patients are treatment like the human beings that they are, treated with dignity? And how do we ensure that when things go wrong, that it is not the fear of litigation or civil suits that direct the process of investigation but appropriate investigative and reasoning is used and outcomes determined? (And I'm not talking about borderline things here, I'm talking about things that can have a profound and long term impact on a person's life.)

So again, how oh how do we ensure that doctors, with all their inappropriate levels of power, ensure they literally ARE acting in a patients best interests and that on the occasions where they do not, that they are appropriately held to account for it....like any other person in society would be....especially given these people have the lives and livelihoods of other people in their hands. How?

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!

Theaters and hiding

The last 6 months have led to a significant increase in a desire to hide. I really struggle with leaving the house. Any person on the outside would probably see a very "together" very "confident" person walking out the door...what they don't see is me quaking in my boots, paranoid that cameras are always watching me, panicking that I'm going to be attacked and held down or thrown to the ground from behind...AGAIN. What they don't see is all the mornings that I wake up and cannot leave my bed, I don't want to be awake but I canNOT leave the bed....they don't see the mornings I can't leave the couch or all the errands I put off because it means leaving the front door....gosh sometimes I even put off going to the toilet just so I don't need to leave my room! Clearly here I'm describing a range of problems that fall on a scale from less severe to more severe....but things have been hard.

Around Christmas time, I didn't leave the house for over 20 days straight....when I am admitted to the specialist unit interstate, my psychiatrist nearly jumps for joy if I make plans to leave the ward let alone the hospital. This is an ongoing struggle and one that is getting harder all the time. I do what I have to do and I do it through dissociation. There are really only two places I feel somewhat safe, my mothers house (where I spend my weekends, but as I feel safer there, I want to leave there even less then I do another place) and where I undergo therapy....I guess I also feel safe in my car too, but that can be tricky. If I'm in my car and going for a drive and away from everyone, I'm okay....but if I'm going TO some place, I struggle, a lot. I can love the people I'm going to see, I can feel secure enough in the place I'm leaving, but the travelling unravels me. I'm a wreck. So the last few months have seen an increase in routines and an increase in anything that assists coping mechanisms...which for me has meant a lot of trips to the movies, the theatre.

Why does the theatre soothe me? I actually don't know. I'm not a huge fan of the movies. I like being able to sit on my own couch in comfort and wander in and out as I get food and drinks and feel sore and need to move around....but there is something about being in the dark, in the quiet with one focus where I can be completely lost, in a dissociated way, but its different to normal dissociation because I'm fully involved in the film (until the pain overtakes me anyway) and its quiet. I'm not one of those people that must have someone with them so I have been to many a film alone. I also find that I use movies and music and books to help process my thoughts and feelings. Sometimes I have no real idea why I become so attached to some films and not others but I do and I will watch these films over and over and over again.

So knowing there are a number of movies I want to see at the moment I took myself out tonight for an extravaganza....I was going to the beanbag theatre for the first time. I've wanted to go for a number of years, I've wanted to hold fundraisers there and I've thought that through in detail (I want to raise money for the Starlight Children's Foundation) and I wanted to go and see the movie  "The Impossible." The downside of all this was that it was starting at 850pm....the number of times I've seen late movies (outside of a boyfriend/girlfriend relationship), maybe twice, maybe three times? Very unlike me but it was the only time this movie was playing in this cinema. So all day I worked hard to keep my anxiety down and work out my dinner and plan everything so I could go. This involved talking to a few friends online for ages to try and reduce my anxiety, looking up online menu's to ascertain exactly what i'd be eating, planning a time to leave and watching a DVD prior to leaving so that I could kill enough time.... it was a big deal!

I got there, I bought my ticket, I forgot to ask for concession...I went in and the bean bags did not contain beans! Umm, by definition, isn'ta  bean bag a bag with BEANS in it! Usually white polystyrene type beans but beans never the less. I think if I'd stayed I would've had a very sore stomach tomorrow because the beanbags were HUGE (two people would EASILY fit on one bag) and they weren't overly comfy, soft enough, but NO support for one's neck or head....so its like doing a banana hold for 90-120 minutes, ouch! But I was sitting there eating my dinner, getting myself sorted when.... I saw a mouse!

I seriously needed my little friend named Zoe (kitten) or even her brother (Mishka) right then! The mouse was definitely a mouse not a rat so that was a positive. I know that pet rats are very clean and friendly but we're talking wild here so I'd prefer a mouse....and it was running up and down the aisles all over the beanbags, which means it was probably used to its home in the beanbag cinema. I was the first person to see it.... I let it go for about 2 minutes and then decided to report it. I got a "so what?" from the guy! I was unimpressed. So I walk back into the cinema and say to the whole cinema (about 15-20 people), "Just to let you know there is a mouse running loose in here and I'm not sure what you want to do about it but I'm not impressed, just watch out" less then 5 seconds later, "OH MY GOSH THERE IT IS!" (I think they all thought I was just going to be an annoying mental illness stereotype candidate)...it didn't take long for the whole cinema to have spotted the mouse.

After multiple complaints and people offering to watch my stuff while I went and sorted it out with management, a worker bee and eventually the manager came in. The house lights went down for the start of the movie and that was when people REALLY panicked. It was okay when it was just a mouse, but I hate spiders and I know its not a spider but seriously, if I felt something scurrying up my leg in the middle of a dark theatre, I'd probably still squeal or scream or panic! Besides, what about the risks of being bitten and like another couple said, how do we know that there are not a whole family of mice under those beanbags (that are not bean bags)?

They ended up closing the theatre and they couldn't move us to another theatre because they were all in use. So we were given our money back and an extra ticket....unfortunately I couldn't find my seated ticket so I didn't get a full refund which sucks big time :(....So I go to all this effort and instead of a relaxing night at the theatre, I create a scene of chaos (which honestly I think would've happened even without my own efforts) and wound up driving home a few hours later, having seen all of 30 seconds of the movie :(. Sad indeed.

What I did learn however is that I don't think I want to go to the beanbag theatre but if I ever win millions of dollars I will covert a room in a theatre room with comfy lay-z-boys (or similar) AND beanbags! I also think I won't be going to the movies that late at night again unless I'm super stressed and its an impulsive decision!

What a night!

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!