I was talking to a friend about what my life is like. She said “I think it’s not Bipolar to have hallucination, delusions and paranoia ALL the time. Isn’t that supposed to be just during an episode? Are you sure you’re not schizoaffective?”
I laughed and said no, I’m pretty sure my doctor would have figured that out. We moved on to other topics.
Talking to my psychiatrist by phone on Monday I mentioned this to her and her response was “Oh yes of course you are.”
She then continued that ‘Bipolar 1 with psychosis’ and ‘schizoaffective’ were essentially the same diagnosis and I could use whatever term I preferred.
So, being me, I did some research. It led me to this wonderful YouTube channel called “Living well with schizophrenia”. The creator is schizoaffective and she is absolutely lovely. A lot of the videos weren’t helpful (I already know what a psychiatric hospital is like unfortunately) but some of them basically explained my life. I also loved that her partner makes some of the videos and is so loving and supportive. I love seeing healthy relationships like that.
So I guess it’s not really news per se, but it is causing a wee bit of an identity crisis. Not sure what term I will use. I’m not keen on changing but I also think it might help others understand what my mind is like.
Okay. I’ve only been on a lower dose of Lithium for a very short time, but I am already noticing a difference. It’s like the lid is off of the jar. So far everything is just sloshing around in the jar, nothing has escaped yet, but I don’t know what will happen with the next step down.
Its both terrifying and exhilarating to have the cap off. My emotions are bigger, fuller- more real. I’m also more creative and energetic. Unfortunately, this new brightly coloured world poses a real threat of my mind getting too free. I will have to be so careful and manage this with a tight leash.
In keeping with this louder life I am still seeing things all the time. My sister says I’m “beautiful minding it”. The other day a fully formed child ran across our lawn- and then vanished. The visitors are getting more real looking and often are indistinguishable from reality until they disappear. It is unsettling.
I also wonder if others experience this: speaking about someone near the phone and then worrying for the rest of the day that they somehow heard you. If I need to say something negative I will move my phone to a different room. Is this weird? Asking for a friend- lol.
Despite all this I am doing really well. Getting lots done in a day. Also have started Zumba online with a good friend of mine. It’s super fun- but I can feel that soon the belly will be too big!
I received a lovely letter today from a friend. It reminded me of why I started this blog over a year ago. My life is rapidly evolving and I have lost sight of what my original motivation was for this blog.
I started this to connect to people. To help people feel less alone. Hopefully to make people feel empowered and ready to tackle their illness head-on. Basically, I wrote the blog that I had been searching for for years.
Now I am living in the land of stability and all that long-ago strife is conveniently forgotten.
Sometimes I forget all the effort, time, and pain that went into reaching this place. Bipolar is just some distant evil that can no longer reach me. But then I can’t sleep one night and the fear come rushing back. Is this the break? Am I on a cycle now? Are these feelings going to pass? I am uncontrolled, emotions right at the surface. Old fears and paranoia rush back in. I am terrified that I have wakened the beast. But so far these days have been one-off. Developing into nothing. It’s a new way of living that I haven’t quite adjusted to.
I want to say that anyone can reach this place- but I have only lived my life and cannot judge others. I hope that all those out there still struggling to find who they are in this new life landscape have everything work out soon. I know how exhausting it can be to fight a battle every goddamn day. A bit of balance goes a long way to recharging the batteries to fight the next fight.
I can tell you that even when things are going well you won’t be the same person you were before. When you have danced with madness and flirted with suicide you cannot go back to the time before. You have learned and experienced things that will change you forever. You wouldn’t want to go back anyway. That person was not well, was not coping. But the new you is. And you need to listen to them. They know what they’re talking about.
‘Well me’ knows that going back and dredging up all those old experiences is not healthy. I need to build my new life. I have dealt with some of the trauma that arose from slipping off into the ether but at this point a lot of it is too much to handle. I have the scaffolding up and have started laying the first bricks but it’s a delicate thing and I have to protect it still. Maybe one day I can un-load everything and live free but for now I have to focus on the forward momentum I have achieved.
So, thank you for reading, it brings me so much joy to hear from you all. I will keep posting as much as I can but if I am silent it is because things are working and I want to live in that bliss.
Has anyone else experienced this? I feel quite right in my headspace. I’m not having unusual thoughts or impulses like I normally would at this stage, but I am still seeing and hearing things all the time. It is bizarre. I am sane enough to know they aren’t real- but it doesn’t help get rid of them.
‘The visitors’, as I call them, walk across my vision regularly. Small creatures and people without faces. They hide around corners and give me a jump, and then vanish. I see cars drive across the road in front of me and then vanish into the trees.
I hear little tunes in the silence of the house, so I keep the radio on all the time to cover it up. I have to go check the appliances in the house regularly. Over and over I swear I can hear them running (laundry, dishwasher) without having turned them on.
Sometimes I see pictures moving. Or the walls look like they are melting. This is the worst. It feels like they are closing in on me and I start to panic.
There are a lot of days I don’t feel safe driving because of these phenomenon. Luckily, I still have good days to in which I get stuff done but often not when I had originally planned.
So what do I do about this? My meds have been adjusted over and over with no relief. Is this just what the rest of my life will be like? I’m not a fan… I would like my brain back please!
The other day this series appeared in my ‘things you might like’ list on Netflix. Since I was looking for something to put on while knitting I thought “what the heck?”
By the end of the second episode I was rivetted.
‘Spinning Out’ is the story of a young woman battling Bipolar while trying to get to the Olympics with her pairs skating partner (who has his own rich-boy issues). Like everyone with Bipolar she believes she is a better skater med-free. She blames the fog and sluggishness, something we all deal with at one time or another. Inevitably the pressure of competing and her complicated home life pushes her over the edge. The writers/directors do a great job capturing this slow decent into madness. She ends up almost losing everything and messing things up for everyone around her.
While that story line is a bit over done, the most interesting part of this series is that her mother is also Bipolar. But she comes from a time when figure skating was all about image and is constantly forcing her daughter to keep quiet and to not ‘spill her secret’. The mother genuinely believes that her illness is shameful and does anything she can to hide it, including leaving jobs regularly.
There are also flashbacks in the show to what it was like growing up with an unmedicated Bipolar mother. The sisters support each other through her ups and downs. Her ups are often dangerous and scary and they have to keep each other safe.
In the end the main character decides to tell those she has negatively affected about her illness, despite her mother’s warnings. It is nice that things work out well for her, but that is often not the case. They touch on it a little when her childhood friend denies that her boyfriend has done anything inappropriate because “she’s just crazy right? You can’t believe her.”
All of the characters in the show are battling their own demons. From racism, to family expectations, everyone is under pressure. This obviously causes stress and friction between the characters. Actually, the lack of communication between each other about what their dealing with is the main theme of the show. If they would just TALK to each other, and not be ashamed, so much drama could be avoided!
Storyline aside, the show is lovely to watch. It is set at a ski resort where the sets and scenery are gorgeous. In every episode there is a significant amount of skating. Its hard to believe they used doubles, its very seamless and you really feel as if you are watching the characters preform. I really enjoyed watching the skating bits, it reminded me of watching skating with my mom when I was little. It truly is a beautiful sport.
So, in the end it was a terrible knitting accompaniment, since I couldn’t peel my eyes away, but a lovely and interesting show.
I know I’m supposed to write wordy and profound things but
today I just want to update you on the happenings in my life.
Gluten-free… Utter torture. I have been trying a
lot of products and most of them are absolute garbage. I have been introduced
to 1-1 flour which works well for cakes and cookies. You can just use your
normal recipes which makes things easier. But everything turns our a little ‘gummier’
that’s the only way I can describe it. Gluten free pasta is good if you eat
really fast. If it sits in the sauce or (heaven forbid) you reheat it the next
day it literally begins to disintegrate. Wraps don’t really wrap- they fold and
then shatter. I have gotten to the point where I’m just eating more rice and
potatoes instead of fighting with the crap bread available. Unfortunately, I
feel SO much better so I’m sticking with it.
Adventures in Anxiety… I went to a bookstore!
All by myself. I have also been going to my bloodwork for several months now,
alone and with relative ease. I am finding if I PLAN a trip I begin building it
up in my mind and freaking out. BUT if I just realize I feel good and scoot out
it’s usually a success! I have now been on CBD for several months and I really
think it has been helping. I just feel a general sense of calming. Now I can identify
when I am anxiety spiralling and sometimes stop it.
Christmas Crafting… My cheap-ass circular needles
have broken. Mid-project. It was devastating but I managed to rescue all the stitches
with a set of double-points so I didn’t lose all my work. I did a little online
research and found that interchangeable needles exist! You get a little kit of different
sized needle tips and several different lengths of cable- and then you put
together what ever set up you need! It’s fucking brilliant. And hella expensive.
But I ordered them as an early Christmas present from my long-suffering husband.
2-4 days shipping. I am literally on the edge of my seat.
Some Other News… I have been called with the
date of my breast reduction surgery! December 31st. I will literally
be getting new boobs for the new year! Isn’t that amazing? I am so excited. I
am working hard to lose a touch more weight before the surgery because that improves
Bipolar and Other Demons… I am starting to get a
bit frustrated. My mood symptoms feel okay, nothing dramatic is happening
anyway, but my psychosis symptoms are still plaguing me. I have good lucid
times (like now) and I have others where I stare into space until my husband intervenes.
I also have the continual feeling of being watched and tracked. And of course
Bill is keeping me company. He likes to hide and just poke his head out scaring
the crap out of me. When I’m good these things all seem silly, but when things
are bad they’re really bad.
So that’s what’s up. Not much, but mostly good so that’s an improvement.
I am very excited that December 1st is approaching, meaning I can
spread Christmas all over the house!
I have heard the quote “recovery is not linear” probably a
million times. I’ve always kind of accepted it as truth but never really paid
attention to it. But, my experiences over the last few weeks have really shown
me the truth in that simple statement.
I have had some huge successes, like going to the movies or
to the pub. But I’ve also had some days where I can’t even walk the dog and
need PRNs. How do all these days group together? They are opposites, swinging
wildly from success to failure.
It seems as though for every leap forward; I take a few
steps back for a day or two. It’s as if I’ve expended so much of my reserve to
do the ‘big thing’, the next day even the little things are hard. I’ve learned
this and don’t schedule ‘big things’ too close together to allow for recovery
While this predictability is frustrating, at least I am moving in the general direction of FORWARD. I am doing things now that I never could have months ago. I take myself to appointments- I even drive downtown for them! I can painlessly pick up a few groceries or grab a bigger order outside. These little advances seem to be pretty consistent. For some reason it’s the social stuff that really exhausts me.
If I’m just with hubby I can string a few activities
together, including restaurants. But if I’m with friends even getting together
at home can wear me out. I love my friends! And I feel like I can be myself
around them. I think it’s just the intensity. Talking consistently for an hour
or two is a lot. Binge watching Gilmore Girls and talking in between is not-
and there for I can hang out for 5 hours painlessly.
This effect was never more obvious then a week ago. An old
high school friend and her partner spent one night on their epic Northern road trip
with us. We had dinner and dessert. So consistent chatter for about 4 hours. I
knew after about 2 hours that things were going to get hard. We moved to the
living room and I began knitting so that I could pull back a bit and let my
husband lead the conversation. Even with this the next day was a complete write
off. Melty walls and everything.
But you know what? I wouldn’t change it. That night was so
fun I don’t give a crap I had a “social hangover”. And I think that’s the most
important lesson I’ve learned from all this garbage. Go try it. Maybe you fail-
but maybe you don’t. Maybe you have a great experience. But if you stay home,
scared to try, you will miss so much. So even if you spend a few days after
watching tv and popping antipsychotics, I think its worth it.
And, remind yourself today’s ‘big thing’ will be only a little
thing in a few months if you keep pushing. If you keep fighting the dips your
recovery will most certainly move upward overall- just definitely not linearly.
What do you do when your trapped in your own life? When
there is no glimmer on the horizon? How do you keep living the same few days
over and over knowing there is no mystical future out there to save you?
Between anxiety and psychosis I can only leave the house
occasionally. With the CBD lately I have been able to do things not previously
imagined, but I pay the price the next day with fatigue and re-bound anxiety.
I have no career aspirations. I am not working toward a
degree or certificate. We are seemingly unable to have children. Our house is
in a place that I am satisfied with it.
So what am I doing? The same shit Every. Damn. Day.
I try to write (which often fails), I cook meals, I clean, I
walk the dog (if I can), I read, I knit. That’s it. Oh, some days I throw a
workout in there.
On big days I will go get bloodwork done, or have a doctors
appointment, or pick up my grocery order. Yes, all these things involve hours
of psyching myself up and panicking.
I could handle this if I knew it was going to end. If I was
just working toward some sort of chronic illness graduation and then I could go
out and take on life.
But that is not the case.
There is no end date. Just an interminable string of similar
days with no progress.
I am trapped by my own mind, locked in my own head. I am
doing everything and anything to break free. But its starting to get to me,
starting to wear me down. I am losing hope.
When I arrived in the North for the first time 13 years ago
I was startled by some subtle differences. For example, the residential streets
are probably twice as wide as at home. Naively, I was excited to have so much
bicycling space! I also noticed the street signs were all way too high. They
are hard to see sometimes, but you get used to it.
Why these things? SNOW. So much snow.
That first winter I could not believe the amount that fell.
They were running out of places to pile it. They had little machines for
plowing the sidewalks- because there was so much goddamn snow!
The first few falls my friends and I gleefully played in it.
The campus green was littered with snow men (although some had dramatic boobs)
and snow forts. But about a month into season it was too deep to play in. Each
step sunk several feet, immobilizing everyone.
We started to see the snow as a burden, an irritating thing
slowing us down. My friend’s car was so low to the ground he couldn’t even
drive it, so we all had to bus.
As the temperature plummeted to the -20’s the snow
miraculously stopped and the University finally had time to start clearing out
the biggest piles.
I think now how something that seems so fun and exciting quickly
turns dark, relates directly to my illness. Mania is thrilling but it soon
becomes too much, immobilizing and scary. Then you are slammed with a come-down
of cold weather and you have to do all the work of cleaning up your mess.
But the North is prepared for winter. It’s seen it all
before. They have all these little ways of keeping people safe and functioning
even when things are rough. Experience has taught the North if you don’t plug
your car in you aren’t going anywhere in the morning. If you don’t plug
yourself in and sleep you’re also likely going nowhere fast. You must widen the roads with healthy habits
so when the snow flies you still have room to move. Put your signs higher with
therapy so I can still see the way when the shit is six feet deep.
I have had a terrible few weeks. I have been mostly not here.
There are glorious days where I write and write and get my piled-up stack of chores
and errands done. But mostly I stare into space, I bang my head in frustration
with all the noises and voices, I’m terrified to leave the house or answer my
phone in case someone is listening who will hurt me. I forget to get even the
basics done, like eating and showering.
But I am strong like the North. I was ready for this snow-storm
and had a plan in place. I’m confident moving forward. I am ready for both the
literal and figurative snow fall that will inevitably come soon. Are you?
I have decided that the only way I will lift out of this
depression is to start fighting.
This one hit me hard. I had been well for so long. Yes- a
few dips and peaks but nothing dramatic. And then BAM so low, so many
hallucinations. It was startling and upsetting to say the least. So I gave up.
I was mad. Like WTF?
TV became my new best friend. I was sleeping entirely too
much. I was not taking care of myself. Then my mom arrived and we started DOING
things, and I started feeling better. To be fair I was in no means cured. But
having clean hair and a full belly does a wonders for the mood.
I am still struggling to do the basics. Making meals is hit
or miss. Cleaning is only on really special days. But I am personally clean and
walking my dog everyday. I have tried so many times to sit at the computer to
write and just ended up in frustrated tears. Likewise with the violin. I just don’t
FEEL the music so of course it sounds like shit.
This is where my battle starts. Even though its agony, I
need to sit here everyday and TRY. So all I get is some crap I delete the next day-
I wrote something, even if it was garbage. Same with playing. Just. Fucking.
Now my mother is gone and my husband is back- a true chaotic
good. He wants to help but he will never understand or adhere to a regular
schedule. His brain simply doesn’t work that way- and that is exactly why I
love him. He is the yin to my yang. My better half. He forces me to be
spontaneous, to not plan an outing a week in advance.
I need to develop a hybrid of us in my daily life. I must
keep to my overarching schedule. It has pulled me out of holes deeper than this
before, I know it can do it again. But if I’m ever going to lick this anxiety I
need to go along with his last minute plans as much as I can.
So this is me. Getting up off the couch despite my entire
mind and body screaming ‘NO!’ and coming to the computer to write. Whether its
garbage or not is yet to be determined.