In need of sleep

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My brain is a toddler.

It refuses to nap. Then gets so tired by the end of the day it throws a tantrum at bedtime. Sometimes I’m so over-tired I cry with frustration as my restless legs keep me up pacing the house. I fall asleep in front of the TV but when I get moved to bed by hubby I am wide awake again.

In the morning I wake confused about what day and time it is, but ready to jump up and play. Then as the morning wears on my faculties deteriorate to liquid walls, breathing furniture and a dense fog preventing any productivity.

I do the best I can around the house, too scared to go out, but its generally a waste of a day.

Then bedtime rolls around again. Sometimes, mollified by my day of spoiling, I fall asleep peacefully and on time. The next day I wake as if the last 48 hours had never happened. But sometimes the cycle starts again. My sleep debt grows and grows, and things make less and less sense.

The frustrating part is I don’t deserve this punishment. I do all the things. I vigorously exercise everyday. No caffeine after my breakfast coffee. I stay busy. I have a long and elaborate nighttime routine. And yet- my two-year old brain is displeased and throws itself around crying most nights.

I’ve added melatonin for now, it is helping slightly. The worst part in my meds (always taken at the same time) make me a drooling zombie while I cry in frustration. It’s like trying to put yourself to bed drunk.

I am comforted that this may all be related to the pregnancy. It definitely happened before, but on a pretty predictable cycle. Now its way more frequent and random. Only 17 weeks left…. Holy crap that has never seemed so long.

And yes, I realize this is only the beginning of my sleepless journey. But I ASSUME that baby-induced fatigue is easier to nap through then a brain who is a jerk.

The Visitors

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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!

A Person First

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Pre-natal appointment #2, aka one of the worst cases of stigma I have ever encountered.

It started out great. My doctor had a resident on staff who I chose to see instead. The resident was lovely and recognized right away I was very nervous about the swabs. I mean who LIKES have stuff going on down there right? She got them over quick and we got on the with the reams of prenatal questions. She was nice and respectful.

I told her I have been having increased trouble breathing. I know being pregnant isn’t the best for lung capacity but I’m only 12 weeks! I’m not even showing. Also, I have a significant history of asthma. Doing the proper thing she listened to all the lobes of my lungs- UNDER my shirt. She was concerned about air entry at the BASE of my lungs. Her training is to get a chest x-ray, but alas I am pregnant. So she goes to consult the doctor.

The doctor decides to come in and check. She listens to the TOP of my lungs (only two stethoscope placements) OVER my shirt and declares “her air entry is just fine. Use the O2 meter.” Which, of course, reads okay since I had been doing deep breaths for the last 5 minutes. Then she turns to me and in a patronizing voice says “its just your anxiety don’t you think? You are anxious about being pregnant? Could that be it?” And she smiles at me in this sticky sweet gag fest.

Now, I have encountered this so many times I’ve built up an armor. I almost laughed at her. But I looked her right in the eye and said “guess it’s all in my head”. She smiled again and left the room like she had discovered world peace.

This shortness of breath is NOT in my head. I exercise regularly yet I get winded going up the stairs in my house. IN MY HOUSE- where I am never anxious. The problem is pervasive, in all situation and locations. It would have been pretty impressive of my brain to have created something so elaborate.

But the problem is what do I do? She is technically my doctor now. I know from experience seeing someone else comes off as ‘manipulative’ or ‘gaming the system’ and the new person just sends you back to your GP. Also, as soon as you have that psychiatric diagnosis EVERYTHING IS IN YOUR HEAD. Because everyone knows you can’t have TWO problems right? If your mind has failed before it must be the culprit again, right?

Grr.

A little investigation would have gone a long fucking way. Maybe it is in my head, or just the pregnancy! But would it kill you to check it out a little? What if there is some disease process happening and you have now delayed diagnosis another 4 weeks (when my next appointment is)?? How am I to deliver a baby if I can’t go up stairs? Doesn’t that seem weird for an otherwise healthy 31-year-old?

Come on people! Take people with mental illness seriously! It’s not that hard to look at us as a PERSON FIRST and a diagnosis second. If she had bothered to ask a few questions and had done a proper physical exam her assessment may have been greeted more openly. But as it stands she had made the diagnosis before she even saw me, and that’s not only wrong but dangerous.

Spilling the Beans

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I am always totally terrified to disclose the specifics of my life with people I care about. Usually their reactions are upsetting. I’ve received a plethora of different reactions. From- ‘oh THAT’S what’s wrong with you’ to ‘meh, everyone has their thing’. Some people are afraid. Some people tell me about their bipolar aunt/mother/boyfriend. But I’ve found in general most people don’t really give a shit.

I think everyone is dealing with their own pile of crap and do not have a lot of energy to deal with someone else’s as well. As hurtful as this feels when we do allow ourselves to be vulnerable and disclose our issues, we all must understand that yeah; ‘everyone has their thing’. Some people are not ready or are unable to be helpful. They are not good at temporarily leaving their own life to give advice on yours. We have to respect that.

I think the hardest reaction to deal with is one of fear. In the last few years there have been great strides in portraying those with mental illness more accurately and less scandalously. TV and movies are starting to include characters struggling with diagnosable problems. While almost everyone can relate to characters with depression or anxiety, they stumble with mania and psychosis. It’s just not part of their experience so they can’t really understand it. Unfortunately lack of understanding is the crux of most fears. On TV people still see crazed killers blowing up buses or killing children randomly. It’s horrible. And inaccurate.

If I could give any advice to someone who has just been told that a good friend or relative is Bipolar, or Schizophrenic, or anything- is this:

Regardless of what your initial reaction was if you go back and do it right you can fix the damage you’ve done. I had people with overwhelmingly negative reactions change their tune and now we are close friends again.

Most importantly- ask questions. You may know ten people with Bipolar but your friend may be going through a completely different experience. It will help you understand the intricacies of their journey instead of lumping them in with ‘the mentally ill’.

On the same vein, ask what YOU can do. They may say that just listening is enough. Or, they may ask you to help them pick out signs they are entering a cycle. Of course don’t volunteer for something too stressful or overwhelming, you need your own boundaries as well. But, sometimes just being an impartial sounding board can save a life.

Finally- check in. Even if you are more of an acquaintance just a texted ‘hello hows it going?’ makes us feel less alone and could come at a critical time. Usually if you stop hearing from an ill friend there is a good reason and being the one to reach out proves that people still care.

So if someone you love has spilled their secret please be kind and gentle. It was probably one of the hardest things they have ever done.

Who Am I?

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I think one of the hardest parts of mental illness is not really knowing who you are without the disease. In periods of wellness you look back and wonder if the choices you made, or the things you did were ‘you’ or ‘illness’. When you have a really good, high energy day the worries a mania is starting creep in. And alternately, when you have a shit day you begin panicking that you are at the very top of a long down hill slide.

So what is ‘you’ underneath all the drugs and self-care? Do you really need two hours to wake up- or is that Seroquil? Do you enjoy yoga- or has everyone and their dog forced you into it because ‘it will help’? How many colouring pages can you fill? How many journal entries can you write before you know who you are?

And then there’s the actual disease. Do you really like biking- or is that your manic obsession of the month? Did you sleep with that guy because you liked him- or because you made a gut decision while flying? Did you bail on all your plans because you’re not really a people person- or because you were hella depressed? Do you really want to die- or is your brain a liar?

My brain convinces me of something new everyday. Some days I’m thrilled and stoked about life. Others I could care less about getting off the couch. I have filled my journal with lists of goals and plans. Each list different then the last. I contact people and make plans- to hangout, to volunteer- and then I feel like shit and bail.

Some days my brain convinces me of less logical things. Like being watched, or that people are living in the basement. This is all fine and dandy when husband is home and can set me straight, but when I’m alone I can’t even phone someone because I’m terrified my calls are monitored and that they will take me away.

Its like my whole mental world is made of water. I try desperately to grab on to something only to have it slip away. Then a tsunami crashes into me from behind. Faltering in the onslaught of the waves I lose sight of the horizon and just float, buffeted this way and that, until the water calms again.

Because of this I’m 31 and I don’t know who I am. I know this isn’t unusual in this day and age, but that doesn’t make things any easier. I’m at a point where I am not working toward anything. I feel un-moored. Drifting aimlessly in the waters.

Luckily, it’s deep winter here and the waters are frozen. I can reach out and hold something firm, use it to boost myself up into the weak winter sunshine. And maybe, I will find my purpose once I can see the horizon again.

Therapy

Today I stood up for myself.

I was at a counselling appointment and my (well meaning) counsellor was really pushing me on my anxiety issues and ways I could work on them. I am well aware of WHAT I need to do. It’s the DOING that is hard. I provided her with some examples of my success (uh Costco people!). I got a quick congratulation and then she wanted me to make a plan for what I would work on this week.

I kind of snapped.

I never feel more mentally ill and broken as I do after appointments. The constant fixation on what is  WRONG, what’s not NORMAL behaviour makes me feel like shit about myself. So I told her that. And that I was done with the whole system. I wanted to work at my own pace, doing things for myself not because I needed something positive to report.

Lately some health issues have me in appointments, tests, bloodwork or counselling almost every other day. It is EXHAUSTING. I feel so poked and prodded. I’m just done with it- for now at least. I was reassured by my counsellor that I could come back when I felt ready. Maybe it’s just me putting my head in the sand and not dealing with things, but I am excited for 2020 and I feel ready to fly on my own. I think over the last 8ish years of mental health therapy, hospitalizations and medication trials we have finally hit on something that works. I have the foundation now. It is up to me to build on it the life that I want. And, I feel like that is something I need to do alone.

I need to spend the year figuring out what MY goals are. How I want my life to look. I want to work on my fitness and find something out of the house to do regularly (that is not a bloody appointment!). That’s all I know so far. I have a long way to go but I am happier right now than I have been in awhile. I suddenly feel very free to explore at my own pace- not be pushed and dragged through things I’m not ready for.

I spoke up- and it was worth it.

Update

Hello and welcome to the jungle.

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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 outcomes.
  5. 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!

Recovery is not Linear

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 time.

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.

Trapped

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.

The Perils of Quitting

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So the last few weeks have been incredibly difficult.

Some of it was my fault.

Three weeks ago I was completely decompensating. There were people and animals appearing everywhere. When I looked at pictures or walls sometimes they moved. I would ‘gap out’ as hubby called it. I was listening to things and couldn’t also listen to reality. I was making tons of little mistakes while cooking. I would get frustrated and angry over little things.

So, logically, my doctor increased my Clozapine, aka ‘the zombie maker’. I was so confused and out of it. The worst part is the hallucinations did not stop right away. So me, confused as fuck, trying to walk my dog and seeing a face-less man results in absolute terror because I can not process that it isn’t real. Cue a run home and a refusal to go that way for several days- until today actually. Now I know it wasn’t real, but I still feel uncomfortable on our twice daily walks with all the phantoms who plagued me for weeks haunting every route.

Unfortunately, the rest is my fault. I decided that since the CBD seemed to be working so well I would stop my benzodiazepine. I figured why double down? Isn’t it better to have less crap in my system? Luckily, I knew to do it step-wise and only got rid of my bedtime dose (since this is when I take the CBD). For a few days it was great. Hardly any anxiety, I was doing as much as my slow brain would allow. And then after about 3 days I went into withdrawal. I didn’t know that. My psychotic brain was convincing me I was dying and I would have regular freak-outs where I was completely immobile for hours while my heart pounded and I imagined my brain slowly dying.

It was all made worse by being home alone. My husband is out there saving the salmon, and I’m here thinking the walls are melting. Thank goodness I have my PG mom, she came and distracted me, re-focusing and re-directing my thoughts. I finally googled benzo withdrawal and I checked every box. To my immense relief it said symptoms would be more tolerable after 7 days. So when I woke up today (on day 8) I was much more calm. I had taken a melatonin for the first time and I slept all night for the first time in 4 days. I was able to feel pretty clear mentally and the physically symptoms were gone.

I still need to cut out my morning benzo dose but this experience has made me utterly terrified of trying it. I definitely won’t do it alone.

So long story short: I am back in this realm again, don’t try to quit benzos without your husband home, and CBD actually seems to work.