Monday 30 March 2015

Another week...

The dietician is officially away for the next month, so I won't be seeing her tomorrow. Four appointments cancelled, five weeks between. After that, she's back for one week before going away for another two.

This June, I'll have been seeing her for three years, with very few appointments missed. She's been far too good to me, as I've never had this long between appointments before. She's had two, maybe three weeks off, but never four. A lot of times, if she has to cancel our appointments, she still comes in to see me first thing in the morning, as was the case last week, but now I don't see her until the 28th.

After that, I think I might re-assess whether I should be seeing her weekly or fortnightly or whatever. I figure this should be a good 'test' to see how I go without. My GP knows that I'm upset about the whole situation, so I might see what she thinks next time I see her.


I'm starting to feel less drained after the whole seizure episode, but I'm still really puke-y.
I haven't been keeping track, but I don't think I've had more than 2 or 3 days without being sick since. The last three mornings, my morning coffee hasn't even stayed down.

Yesterday I was feeling pretty nauseated all day. My first coffee sat fine, but it took me an hour to finish the second one. Most of the day was spent in breakdown-mode, but puke-free.
The evening rolled around, and I'd just started cooking dinner: a safe minced beef and cabbage stir-fry dish. I'd only just finished weighing the ingredients and pre-heated the wok, and felt fine, but as soon as I lit the stove, I was bolting outside to find a bucket.

I was supposed to get my follow-up bloods done last week at the latest, to make sure my calcium and vit. D levels were back up, but I couldn't drag myself out of the house. But after being sick again this morning, I went to the clinic and got them done first thing.

The worst thing when I feel sick, is I have no clue what to do for food. Eating will surely make me feel worse, and it'll probably come back up again anyway. Or do I feel sick because I haven't eaten in so long? Should I try liquids, or something 'heavy' and starchy? Something juice-like, or dairy?


I don't have much to say about this week. It's been one train wreck after another. As soon as I get my stress levels down, it all gets piled straight back on again.

I am so full. Of thoughts and emotions and feelings and pain. But so empty. I can feel it building up inside, and I have to get it out, by crying or screaming or ranting or hurting. All I can feel is negative and I'm so afraid and I feel so completely, utterly, hopelessly lost.

I'm not functioning. My thoughts are a mess in a way I can't explain. It's like hitting a crisis point after the seizures, and you know something needs to change, but instead I'm still tumbling downhill.

I don't want to do anything. Not sew or write or watch or read or game. Australia finally got Netflix on Tuesday. Very exciting stuff. But I can't watch anything. I can't focus. It all seems pointless.

How am I going to get through each day?
One day at a time”, they say, but even that is too much.

Everything is too much. There are too many things I should be doing, too many things to be organised, too many things to try to balance. I'm caught like a deer in headlights, and I don't know what to do.

So I shut down. I do nothing. I waste away, waste another day, and nothing, there's nothing.

I'm sorry this post is so fragmented. Right now, all of my energy is going into just getting through each day, and even that's an overwhelming prospect.

Forticreme, to change things up a bit from just Ensure. I'm not having them that often, maybe a few times a week if I can manage, but it's good to have them around again. The dietician gave me a four-pack while things got sorted, and we got a box on the doorstep last week – 24 of the things! Good thing they have a long shelf life.

My selection of UK hot chocolates, courtesy of the lovely Lolita. So many different flavours! Australia is truly deprived when it comes to low-cal hot choc.


And just quickly, I wanted to give a quick shout-out to Shelby. I can't find a blog to reply at, but I really wanted to let you know how much I appreciate your support. Your comments always give me some food for thought, and your honesty and directness with speaking your mind is always refreshing.


xxBella

Tuesday 24 March 2015

Anti-Depressants and Attempted Outings

I had an appointment with my GP on Thursday. After that, I was planning to get out and finally go to the wildlife sanctuary. It seemed like a good way to try to get a break from the recent chaos, walk around, see all the cute little animals. I had an early bath, and even freshened up my hair colour for the first time in four months, but all did not go according to plan.

At the appointment, a lot of it was follow-up on the past weeks, the smoking and seizures and stuff. She thinks that the big overdose when I was 12 y.o. has left me some kind of a tendency for seizures.

My blood tests from A&E weren't so great. My vitamin D and calcium were even lower, which was probably from all the vomity yuckness. More bloods. More suggestions for supplements I still haven't been able to take. EEG results take a while to process, but the neurologist didn't freak out at the sight of it, so that's a good sign.

Then we were talking about meds, and mum mentioned she thinks I should have a sleeping pill, which we'd talked about but I just wasn't going to bother mentioning it. I told the GP I have occasional nights when I just don't sleep, but I go through the next day until a usual bedtime just fine. She asked if I'd had temazepam before, but last time they made me hallucinate, so no, not going there.

So in the end, she said to try an extra gabapentin (newer, secondary, so-far-useless antidepressant) on nights I can't sleep, and to cut back on the mirtazapine (anti-depressant I've been on four years, also useless) a little to see if that helps me sleep.

This... I don't know what to say. This really fucked with me. I should mention, at this point in the appointment, I just wanted to get the hell out of there. I just feel so defeated in every way, I couldn't speak up. It probably all sounds ridiculous, but it really upset me.

For a bit of history (and I promise I'll make this quick), I've been on mirtazapine for four years, and gabapentin is the fourth secondary anti-depressant they've tried in the last two years.

My first psychiatrist gave me my first anti-depressant aged 12 - fluoxetine They messed with my head, made me even more depressed, and ultimately lead to me overdosing on the entire medicine cabinet, mentioned before.

After that, I refused to touch medication for years. Then when I was diagnosed with Anorexia, sectioned, and sent to the ED Unit, they initially put me back on fluoxetine. This was some five years after the overdose, for timescale. I fought and begged and plead for them to give me something, anything else. This is how I was first put on mirtazapine, and back in the medication cycle.

I haven't wanted to take myself off them, but if I don't, I'm going to be stuck on them forever. I think I'm starting to agree with what the MHN said, that anti-depressants don't do shit for me. I even asked my GP again this time, 
"Can I just come off them?"
"No..."

It probably wouldn't have upset me so much if it weren't for everything else that's going on.

I still haven't heard from the mental health nurse. She left in January and she said she'd call and organise a time to catch up in the first week of March, but she never called. I know it's nothing personal, but she made it personal when she said she'd call. It was shitty enough when she had to leave, but that was just rubbing salt into the wound.

I was just starting to trust her and talk to her, and then she left. She was the first person I'd been able to talk to for so many years. And I'm supposed to start seeing this new MHN in May, and ugh.


It's like I'm back to square one, before I started seeing the MHN or my GP or even the dietician. Appointments feel like an obligation again, Something I have to push myself to, instead of welcome breaks. I just want to scream that things are not okay but there's nothing that can be done to make things better.

I feel like I've hit a massive brick wall, and it just keeps building higher and higher.


We were going to go straight from the appointment to wildlife sanctuary, but I ended up having a bit of a meltdown. We did go for a drive to fill in the morning, but didn't go anywhere in particular. Even before the appointment, I was an anxious wreck at the thought of going out, crying, shaking. But still going to try. I've been planning to get there for at least a year now. But right now it's just too much.

I did half get out a couple of weeks ago. It's not much, but it's the furthest I've ventured out since December. Mum went to pick up my brother and his girlfriend from the airport, so I went for a drive along. When we dropped her off, they bought out their foster kitty to the car. I wasn't going to go in, but after much persuading from my brother, I went inside and played with the kitty for a while.


And thank you guys for your feedback on my last post. It was not easy to write, and to be honest I was afraid to check my comments for a few days. I was kind of afraid you'd all freak out, but I think it might help give you all a better idea of what I'm going through. It just really means a lot to me that I've got your support through this.




He also bought me back souvenirs


xxBella

Monday 16 March 2015

Seizures and Synthetics

I don't normally talk much about my drug use on here.
Maybe because it's not much of mention. Maybe because I'm not exactly quitting.
I think I manage it, for the most part.

Until it nearly kills me.

As a lot of you know, though some won't, I smoke a lot of weed. I have daily for nearly five years now. This, I do manage, and am working on. I just don't talk about it much, to anyone.

It doesn't feel appropriate to get into here, (plus I wouldn't make you all endure a post twice as long as it already is), but I do kind of owe you all an explanation and I promise I'll write more about it one day, so for now I'll just give a quick overview.

But for the last few years, I've also struggled on-and-off with an addiction to synthetics ('synthetic cannabinoids'). I don't smoke them as much as the real stuff, but still too much. I can stay off them for a few months, at one point I even stayed off them for over a year, but they always drag me back. They haven't done me any major harm for the last few years, but they used to really fuck me up, mentally and physically. I'd hallucinate, scream out for now reason, my heart rate and pulse would either be dangerously high or dangerously low. The list goes on.

Anyway, this week.

It started on Monday. Without going into detail, it was a shitty day, I hadn't smoked anything but tobacco for a couple of days, and I ended up smoking a different brand of synthetics that I'd not tried before. For the last couple of years, the effects (and side effects) have been pretty consistent, so I wasn't too worried about it. But it turned out to be a very different beast, not like anything I've had in years.

I was planning to have one cone (I think you non-Aussies would call them 'bowls') to calm down, cook dinner, eat my veggies, smoke some more and have an early night. I had one little cone, and mum popped out to the car to grab a phone charger. And then it all went black. 

By the time she got back (less than a minute), I was having a goddamn seizure. 

She called for my brother, and my head flopped back, and she yelled for him again. My brother, the one with the uncanny ability to KEEP CALM. He immediately identified it as a seizure. I was slurring, trying to talk, convulsing, knocking things over. They checked my O2 sats and tried to get my blood pressure, but I wouldn't stay still.

I don't remember much of it at all, but I was experiencing full hallucinations. The background was all white, faces were blurred, there were people all around. It felt like my feet were cemented down, like I was screaming but no noise came out.
The older chemicals used to give me partial visual and auditory hallucinations, but nothing like this. I didn't know where I was or that my family were there. In my head, it was like I was dreaming, then the background and my family's faces started to come back.

I saw mum and grabbed her shirt-front, told her I loved her, and collapsed back in my chair.

"Is she breathing...?"

My brother knew it was a seizure. My mum thought I'd done brain damage. They were only waiting two more minutes for me to start improving, or else they'd be calling an ambulance.

Then, in an instant, I was completely lucid, able to get up and walk inside, no longer slurring, sober as a judge. Then I started throwing up violently.

The whole episode only lasted about 15 minutes, but it left me (and obviously my family) quite shaken up. 
I was planning on going to see my GP in a day or two, just to check in. I do actually have a 'history of seizures', but I'm not epileptic. When I had the massive overdose age 12, I had seizures while in a coma. My newest antidepressant, Gabapentin, is only subsidised because of those seizures (technically it's anticonvulsant for treatment of epilepsy - depression and anxiety are off-label uses).


Obviously, I didn't plan on smoking any more of this type. But between addiction and how unbearable everything is right now... it's not that simple. I smoked it again in the the middle of the night on Wednesday, some time around 3am Thursday.

I woke up on Thursday, throwing up all over myself and the couch, around 8am. I moved outside to my armchair, and mum set about hanging the washing on the line. Within 60 seconds and only 10 meters away, I had another seizure.

I bit my tongue really hard (still hurts) and blood was pouring from my mouth, eyes rolling back, shaking uncontrollably. No hallucinations this time - I simply was not there. Then I just went still.

Mum called 000 and got me stable in my chair. Amazingly enough, the first ambulance was here in just 5 minutes, and the second crew got there shortly after to take me to hospital (the first ambo was solo). I'm just glad there was a crew nearby for once - I don't think mum could've wrangled me out to the car and into A&E herself this time.

"I've gotten very good at telling when you're breathing."

The ambos were here for an hour and a half before giving me a shot and taking me to the hospital. They were apparently fantastic - very understanding with my anxiety. I was in A&E all day - 8am until 5pm.

"And of course, you being you," says mum "you didn't want to get on the gurney. They got you up and out of your armchair, nearly had you there, then you just went 'no' and collapsed back in your chair."

Unfortunately for me, I couldn't go to the Private A&E, and I cannot bear to be in the Public Hospital, with the Horrible Psychiatrist lurking around the corner. There are certain situations where you have to go to public, and any sort of seizure means private is out of the question. I was panicked all day, a lot of it simply because I was in this place I swore I'd die before I landed in again. It's been three and a half years since I've been there - my COPD admissions were both private, and any emergencies have been dealt with outside hospital.

Spoiler Alert: I didn't see The Horrible Psychiatrist (although I probably would've if I was actually admitted).

I felt so sick all day, filling up bag after bag with vomit. For the first little while, they wouldn't even give me anything to drink. Then I was allowed ice cubes on sticks, then they finally let me drink. I drank 11 glasses, one after the after, down the hatch in one slug. It felt so good to be drinking pure clean water. Each glass came straight back up in full, but it still felt so damn good, like I was cleaning the poison and crap out.

The doctors and nurses were all fab, very kind and caring. I actually really like most of the staff at the public hospital, but The Horrible Psychiatrist and his Minions ruin it for me.

I panicked when they clicked on the hospital bracelet, then tried to place two IVs. I was so dehydrated, they couldn't find a vein. Usually, my veins pop up at the drop of a hat. I asked if they could place it in my hand or wrist, because elbows freak me out (anyone else refuse to bend their arm with an elbow IV?), but they couldn't get it in. I didn't need it though thankfully - it was to get me meds quicker in case I had another seizure.

I didn't stay as long as they wanted me to. The clock was ticking and I was panicking more with each hour that passed. After crying that I just wanted to go home, and the doctor trying to convince me I should stay for observations, I got defensive and pulled out the "I'm not involuntary, I should be able to sign myself out, I just can't stay here". I do not have a good track record with discharging AMA. If I was in the private hospital and I knew the Horrible Psychiatrist was no where to be found, I probably would've stayed.


I got an emergency appointment with my GP the next day. In fact, it was the only reason they were even somewhat okay with letting me discharge myself - because I have a 'support network' and three appointments this week alone.

She'd already gotten some notes from the hospital, so thankfully I didn't have to explain from scratch. She was really cool about it. I don't talk about smoking much, whether with you guys or my team. The Lung Doctor Man knows I smoke synthetics, but my GP only knew about the weed. She checked my OBs and sent me for an EEG, which was done later that day, so I'll get the results later this week.

Part of me doesn't appreciate the seriousness, or maybe it's just part of the whole self-destruction thing. I know it was stupid to smoke it again, and more so to do it when everyone else is asleep. I didn't think "but what if I have another seizure?". I just thought "I need a goddamn smoke".
(I think I might've actually had a seizure in the middle of the night after I got back inside, but I have no way of knowing for sure. Obviously I didn't choke on my tongue or anything, so all good.)

"I'm just amazed you made it back inside at all." says mum


This week's just been a blur. Everything's happened so quickly, so suddenly... The seizures, the hospital, the bits between... I've been trying to put everything together from bits and pieces from my notes and what mum's told me. Honestly, all I remember from Thursday is waking up puking all over myself, I vaguely remember being in the ambulance, then there's a big blank patch until the last few hours before I left the hospital.

You know how, after a crisis, you spend a while in a bit of a daze before you settle back to normal? That's been my week. 

I honestly have no idea how this post will be received. It's something I've been putting off talking about for quite a while, and there's still a lot more to say another day, but I think it's time to start being honest. I just hope you don't think less of me. This post is long enough as it is, but I might will write more at another time. You've got the climax, but the build-up and explanation will have to wait for another day (lest I write another thousand words). 



xxBella

Monday 9 March 2015

Traumaversary

I went to my wardrobe and opened the door. I feel uncomfortable in the room that used to be my bedroom, and still houses a bed, but is home only to Misty. I've slept on the couch for years.

I know exactly where it sits - the tattered old manilla folder, inconspicuous, underneath the box of pieces of paper I've acquired during hospital stays. 

For the last two years, I've not peeked inside it. I've avoided it like the plague, even though it jumps out and hits me in the face whenever I open the wardrobe. But this year I was anticipating it. Not looking forward to it, by any means, but it had pulled me in long before the day.

Inside it houses what little evidence I could recover. I don't know why it's so hard to not look at.

Two books full of depressing teenage poetry, a lot of it about Him. There are 57 journal entries about Him, printed off from my old, mostly private Live Journal - that's probably the most important thing. A chat log from an online helpline. The statement sits half-written in an old lime green notebook. It stops mid-sentence, and I still can't bear to say or write the next line. It's been five years since I last wrote in it.

Now the folder sits next to the couch, under the table, between my laptop and Stable Table, staring at me. 

I don't want to write too much more about it, but it goes a little something like this: during the four months it lasted, each year I go back and re-read everything I wrote about it. Sometimes it's all in one go, resulting in one colossal breakdown. Other times, like this year, I drag the process out day by day. February through June, 2008. I was 14, coming on 15.

"On this day seven years ago..."

The Sick and Twisted Ritual has begun.

I've never talked to anyone about it. They know it happened, but I've never talked to anyone about it. When I first told someone - I think it was the following year - I was supposed to see a specialist counsellor but never did.

He came up in my second-last appointment with the MHN, when she tried to convince me there's nothing to be afraid of when I go outside. I was just sitting there thinking "don't do this to me, don't make me feel able to open up when you'll be gone in 30 minutes or less".

To add insult to injury, it was the 12th anniversary of my father's death, the first time it happened. And he knew it. February 29. A leap year. The most painful date in my world. Next year, it will be 20 years since I lost my dad, and 8 years since I lost my self. A leap year.

I don't get to the New Year or my birthday and look back at the year. I look back during the Traumaversary.

The dates are burned into my head.
The memories burned even deeper.
There is no escape.
There is no relief.


As for the dietician drama... If we were a couple, I suppose you'd say we're "still fighting". 

I don't feel like I can talk to her or trust her like I used to. I've lost all zest for her appointments. Once something I looked forward to, a much-welcomed break in my week, now an obligation, something I have to drag myself to do.

"My heart jumped with joy when I saw your little blue car in the parking lot."
She says it every week lately

I feel like we've hit a wall. I think she knows it too. It took such a long time for me to be able to make eye contact with her, to be able to hold a conversation, and now it's all coming unravelled.

I didn't even ask 'why' this week. It's obvious she's not going to give me an explanation, and it hurts less to not ask. 

I mumbled my answers and didn't tell her about the horror weekend.

"So, what are we doing today? Where do we go from here?"
"I don't know."
"Was it hard to get here today?"
"Yeah."
Brick wall.

It's like I'm back to square one with her, in terms of trust and being able to talk to her, and it sucks. I miss how things were a month or two ago. Eye contact is fading again. She has to pull answers out of me. I still haven't gotten on her scale again - obviously it isn't important. It's not so much her weighing me that I have issues with (although it seems pointless), but more her not-a-big-deal response to consistent losses are triggering as fuck. 

I think I should cut my appointments back to once a fortnight. It doesn't seem worth going every week any more. She's starting 6 weeks leave at the end of the month, so after that we'll see what happens. 

It's times like these I'm inexpressibly thankful for this community. You guys just really get it. Like no one else. 

I still haven't heard from the MHN. She said she'd call last week to organize an off-the-books catch up (for which my lovely GP has offered a room at the clinic to avoid having to go out of my safe zone). 

It feels like my support system's been torn down in the space of a month. The MHN is gone. I can't talk to the dietician any more. My GP is also taking leave while the dietician's away for 6 weeks. The new MHN... I'm still not sure what's happening there. I see the GP next week, and we'll see what happens.


And I know this is long enough, but I thought I'd quickly mention, I started reading Wintergirls this week. I'm about a third through, but I don't see what all the hype's about. It's an easy read, but it doesn't hit me in the face as being an ED book the way others have. Maybe I'm missing something?

Anyway, it's a free .pdf copy I've been reading. It took me so long to find one, so I thought I'd share the link in case you guys want a copy.


The dietician did give me some freebies though. She had all these extra Ensure TwoCal's sitting in her cupboard. Best Before: April 2015. So she gave me seven, and told me to grab more next week. I've had little bits of two so far, and will try another tonight, maybe watered down a little. They taste so foul - I'm used to buying big tins of powder and weighing it up myself to the perfect strength for me to stomach. 




xxBella

Sunday 1 March 2015

Untitled

I saw the dietician twice last week - our regular Tuesday appointment, then again on Thursday.

On Tuesday I walked in and she said
"I'm glad to see you. I wasn't sure after last week, and I was a bit worried when your car wasn't already here."
But that was about all she said on the matter.

We sit down and she asks the usual questions. I can't look at her. I can't talk to her.

"Do you want to get on the scales this week?"
"Not really."
Why bother?
"Well, I'll leave it up to you."
"No... no.'

At the end of the appointment she asks if there's anything else I want to talk about.
"I'm all ears."
I just shook my head. I couldn't say anything. In retrospect, it was probably my opening, but I felt like she was saying "if you want to talk about anything except last week", and I didn't want her to get angry if I brought it up again.

So that didn't go so well. I left feeling just as crappy as I did before. I umm-ed and ahh-ed and eventually made another appointment to see her on Thursday (she only works at my clinic two days a week).

The whole appointment was one big uncomfortable mess. I know she feels bad about it, even if she isn't sorry about it, but we're still two bulls at a gate.

It wasn't going too awfully, but I had to ask the only question I had on my mind.
"I still don't understand why you didn't just tell me."
I even added all my clarifications that I wasn't expecting her to encourage me to lose, or to say the opposite of what she'd say if I was losing. I don't even need her apology any more - just the reason.
But of course, we're never going to reach a consensus on that so we shouldn't talk about it.

I just cried and cried.
She cried.
Mum cried.
I told her I didn't feel like I could really talk to her any more, these past couple of weeks.

But in the end, nothing got sorted out, and I left in tears nearly a full hour later. I just wanted to know why. I wanted to come out of the appointment with things resolved, air clear, but instead I'm still left dreading each 'next appointment'.

She did say that from now on, when she next weighs me, she'll tell me if I gain or lose more than 2-3kg (i.e, outside the range of normal fluctuations). I'm pretty sure we agreed on that when I first met her, but whatever. It doesn't matter much now. I still don't even see the point in her weighing me any more.


It's been a hard week, this weekend in particular has been painful. I'm not quite ready to write about it but I'll try again another day. It feels like everything just keeps stacking up.

I'm just not really functioning. I don't feel like I can do much at all. I don't know what I'm doing. I can barely keep track of the time or what day it is, let alone all the shit flying around inside my head.

This week's felt like a bit of a crisis. It's just been passing the time and getting through each day - each hour, each moment.

I've been coping in any way I can think of that won't land me in hospital - both positive and negative.

I'm smoking too much
Staying up all night
Journaling a lot
Taking advantage of my meds
Laxatives
Going for long drives
Self-harming in ridiculous ways to avoid cutting (the safe A&E isn't 24/7, after all)
I'm trying to be mindful
But also fasting this weekend out of some sick obligation I can't quite put into words. It's nearly religious.

I don't see the GP until the 19th, at which point I'll see the dietician once more before she takes six weeks leave (well, four weeks off, one week on, two weeks off). I still haven't heard from the MHN, and it's still a while before the new referral goes in (my GP was actually going to scope out the clinic and even take pictures for me, so it's not a completely new-and-terrifying place to go, so her intentions are truly good).


And thank you guys for the comments on my last post, so, so much. I never forget how caring and understanding you all are, but it still amazes me every time I read what you all write.


xxBella