The Best Laid Plans

So far, my baby journey has not been anything like what I had planned. This makes me sad. I know it shouldn’t. He is happy and healthy (I’m a lucky girl) but I can’t help it.

I didn’t get to give birth. I didn’t even get to try. It is a rite of passage that I was terrified of and excited for. I really wanted to experience it. Since conceiving G was so hard I don’t know if I will get another chance.

I am no longer breastfeeding. To me breastfeeding is like magic. Somehow your body can keep a teeny baby healthy all on its own. It’s pretty incredible. Bottle feeding will never compare to that feeling of connection you get breastfeeding.

My baby is still too small for cloth diapers. Every disposable I throw out makes my heart ache a little for the Earth. Its been two months of waste, and its a tragedy.

Little Bean was born too early so hubby was not able to take paternity leave because of project commitments he had made. So our first couple months have been stressful and tiring instead of the slow snuggle fest I had envisioned.

My mental health has tanked and I have had to start medication again. I felt so wonderful during pregnancy I really believed I had been cured. It is heartbreaking to know I was not, and this garbage will continue. I wanted to be a happy, loving mother who had her shit together. Now I’m a sad one who listens to the WiFi. Obviously, I am getting better because I know now it’s not real, but I still hear it.

It’s really hard to rationalize all these things when you feel like crap.

A friend told me that the ideal of motherhood will never be 100% realized and that is perfectly okay. That we do the things we need to to get by.

My mom says I have a happy baby who loves me. Who doesn’t care that I am formula feeding now, he just wants to be full. Who hasn’t noticed I’m sad because I try so hard to only show him love.

My hubby says were doing the best we can and that should be enough for me. That having to switch to bottles has allowed other people to help more. That a few months of garbage is minor, and all my other plastic-free efforts are off-setting it.

Why can’t I listen to all these people? Why don’t their kind, reassuring words get through to me? Why must I continue to beat myself up and feel miserable?

It doesn’t help when its not only your voice but others telling you your horrible.

I really hate my brain sometimes.

Edging

Remember a few years ago when the big thing in sex was edging? Like getting super close but never cumming to make the actual experience later fantastic? Maybe you don’t. Maybe I’m weird. But I definitely remember reading an article about it.

Anyway, that’s what life has been like for a few weeks now. I get so close to flipping over to the darkside but I never let myself go all the way. Every time I get really ramped up I do all my soothing/coping skills to keep from falling over the edge.

Lots of things push me up higher. A sunny day. Exercising. Having a visitor. All normal things that would make anyone feel better. But I start to feel irrationally good. Like maybe we should sell all our stuff and move to the moon good. I talk really fast and loud. I demand that hubby pay attention to me and listen to my somewhat illogical ramblings. I start a big project.

And then Shamus gently says: ‘honey, you’re getting a bit up’. And I say: ‘shit. But I feel so good!’ ‘Exactly’ he says.

So I go downstairs and sit in the dark and try to chill. I drink herbal tea. I do some light yoga. I have a hot shower. I slooooow down. Eventually things start to come back into focus. Like now. I still feel pretty wired. But not wild. It’s like electricity buzzing under your skin and around your brain. Everything seems so bright and loud. Things MAKE SENSE in a way they never did before, connections form between things that they probably shouldn’t. It takes so much concentration and will power to ignore all this and just breathe. Every part of you wants to run a marathon or something but you must make yourself just sit. IT’S AGONY.

I only need look at the activity on my facebook to know things went off kilter. I’m usually a group lurker but this afternoon I commented on and liked ALL the things. I did Zumba. I drove across town with music blaring to get expensive sushi. And I planned a novel outline while breastfeeding G. It was fun.

Now I sit in the dark, like a mushroom with mint tea, writing this and hoping that the music stops soon and that since its dark I won’t see anything too weird (just cats so far).

Music is a big trigger for me. I am very susceptible to feeling what the music wants you to feel. Sad. Happy. Nostalgic. It all hits me hard. That’s why I listen to the (real) radio so much. The repetitiveness of it dulls this effect, but still covers the imagined radio noise quite nicely. There are certain bands and albums that will immediately make me feel up or down. I can rely on these to keep me modulated one way or the other. Regularly listening to new music helps keep the imagined radio fresh. It is currently playing “ordinary man” by Ozzy which is excellent, and you should check it out if you haven’t.

Anyway, I guess what I’m trying to say is that the absence of Lithium has become noticeable. My mind is fast and lose, just feeling everything really big. Its fun and scary. I am riding the rollercoaster again but I have some tools now, and a lot more to hold on for.

Um, what?!

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.”

Um, what?!

She then continued that ‘Bipolar 1 with psychosis’ and ‘schizoaffective’ were essentially the same diagnosis and I could use whatever term I preferred.

Right.

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.

Decisions

Its pretty lonely when the person you spend 90% of your time with not only doesn’t talk or respond to your funny faces, but also sleeps a lot. I find myself talking to myself all the time. And sometimes others answer back.

These little convos are getting a bit out of hand. I’m trying to rein it in.

The other day I was just chilling on the couch with G when a man yelled ‘son of a bitch!’ right beside me. Of course there was no man. It was the loudest hallucination I have had in a long time. Unsettling to say the least.

Most of the time I just ignore the noise. Its often not voices but machines running or music so its pretty easy if you throw the radio on. But I have to admit without the much-hated Clozapine I am coming to realize how noisy my brain can make my life.

Ever since I went on this med I have detested it. It has the wonderful propensity to make you drool and sweat. On my original high dose I would have to wake up to change my pjs and pillow case at least once a night. Gross- I know. Once I got used to it and decreased the dose a bit it became much more manageable and I just got used to waking up…moist. So long story short; I was stoked to get off it.

I realize now that it is so easy to forget what things were like before. Meds suck- its hard to deny the side effects and the dulling effect they have- but once you stop them you realize being crazy kinda sucks too. So now I face a challenge: to medicate or not? Can I live with this? Get used to it again? I’m not trying to do something high-level like med school, a little distraction may be okay.

Surprisingly, this evening my pharmacy delivered my pre-baby meds to the door. I didn’t request them. They took it upon themselves which is very strange. Sometimes I think the universe sends us pretty clear messages, but I don’t think I am prepared to listen to this one quite yet. I am enjoying feeling like old Me. It’s like I’ve gone back in time to who I was before. I thought a lot of the changes in my personality and thoughts were just age and experience creeping in, but I see now that it was all medication.

Its not a myth that psychiatric medications change who you are a little bit. I would never lie to a noob and say they don’t. It’s a chemical designed to alter your brain chemistry after all. Now don’t freak out! I whole heartedly agree that medication is often both necessary and helpful. But I also feel it is over prescribed.

That’s why I love my psychiatrist. I’ve gone back to one I was seeing before being transferred to the psychosis intervention program. She almost never suggests a change in medication as the first action when there is a problem. She always asks whether more sleep or exercise or socialization might help. She also has touted CBD and melatonin for anxiety and sleep instead of throwing more commercial meds in my face. Its so refreshing. I’m not scared to go see her and I’m honest with how I feel instead of hiding everything for fear of an increased dosage or changed meds. I feel like we are a team and that together we decide what is right (and what I’m willing) to do.

I feel like with her on my side I can try to tackle this challenge. If I fail I know she will catch me. But if I succeed what a wonderful thing it will be!

So people can stop worrying…

Knock on wood but- things are improving.

I am cheating a little by starting a new medication that is breastfeeding safe for the voices/music/apparitions. Not being constantly distracted by them is helping IMMENSELY. I can also sleep properly at night without the noise and a slower brain. It’s a low dose that shouldn’t be too hard to get back off of when the time is right.

Mood-wise I guess it was just the pregnancy hormones because the clouds have certainly cleared. I am definitely exhausted and worn down by the time I crawl into bed every night but the crying jaggs have passed. Yay motherhood!

We found help with the nights that hubby cannot cover due to work which eases the stress significantly. I’m also starting to nurse and the amount of washing and sterilizing of bottles has greatly diminished (although the laundry has not!). Meal planning simple dinners that create leftovers is helping keep us less hangry.

I am still nervous to take G out with everything going on and his erratic schedule of inconsolable crying, but I am eagerly looking forward to a return to somewhat normal soon. I think his first big outing will be the library (he’s been to the lake quickly, but he slept through it!). I’d like to instil a healthy love of books early on if possible.

There are still many moments where I ask myself “what have I done?” but I am really looking forward to so many things! I can’t wait until he is more interactive and we can play and sing and dance. For now though, baby snuggles are pretty awesome.

Restless nights

Sleep is one of those things that you don’t appreciate until it abandons you. Laying in bed awake is possibly one of the worst feelings. When you know you have a full day the next day, yet your fevered brain is running a marathon in your skull its enough to make anyone freak out. I spend most of my night trying to meditate, make lists, count sheep… anything. The music plays, my thoughts wander everywhere, and my eyes won’t stay closed.

Sometimes I drop off and have these incredible dreams so vivid I wake up to do things and realize minutes later that its not real. Its disorienting, upsetting, and I’m pretty sure it means I’m not getting good restful sleep.

During the day I run as if powered by steam. Constantly moving, never settled. I feel awake- which is strange and probably not healthy. I can’t nap. I don’t even feel like I need to. The only symptom of my 2-4 hours per night (so far) is being bitchy and forgetful. The hysterical sobbing seems to have passed and left behind a kind of strange detachment.

Hubby goes back to work Wednesday. We are going to run a little experiment in coping this week. I’ll keep you posted on how it goes.

Dredging it all up

I recently spent 7 days in NICU with my 4-week premature son G. While the experience was vastly different, it brought up a lot of trauma from previous psychiatric hospitalizations.

Post c-section I was in too much pain and was too worried about G to be bothered. But as we improved being there chaffed. I had a key card and ‘could’ leave at any time. But that would mean leaving him. I began to feel totally trapped. The smell of the hospital sheets was the same. The food was the same. The boredom was the same. Suddenly I was a psyc patient again.

As an involuntarily committed psyc patient you have no control over your stay. They say when and if you can go home. The worst part is they often tell you things are going well and you might be home by end of week and then they yank it away because of some small thing.

When this happened with G I totally lost it. He was doing so well. I had even gone home for the night to get the house ready. When I returned in high spirits the next morning he was back in the incubator under the jaundice lights again. The nurse told us at least another two days. I freaked out. This had happened to me so many times before and something in me just couldn’t hear those words again.

I feel selfish even writing this article because my poor baby was the one unwell and I should have been entirely focused on him, but I also have to be honest about how I feel.

G is really grappling with his bowels because his little immature digestive system is struggling to keep up to his voracious hunger. The little dude is up to 6lbs 3.5oz already and wants tons at every feed but is then gassy after. We have tried every method to help his poor little belly but the doctor assures us only time will help. It is hard emotionally to listen to him cry and exhausting to hold and burp/belly massage/comfort all day and night. Hubby and I are totally drained and hoping it passes soon.

Since I still struggle to sleep, even when given time, I have been dealing with a lot of symptoms creeping in around the edges. I keep telling myself it is just stress and fatigue- but I am also researching the earliest possible time to get back on meds. Everyone keeps telling me this is normal for new moms to be all over the place, which I am doing my best to deal with, but it’s the music that is really getting me. Some days it is so loud it distracts me from everything and keeps me awake. A few days ago (after 1 hour sleep in the last 24) there was a lovely mix of random disconnected talking, a few screams and MUSIC. I finally caved and took my rescue med Olanzapine and 10mg of Melatonin. After a solid 6 hours of sleep things improved dramatically. I was not cured, but I was coping again.

The part that scared me most was my anger toward G. That was really the straw that made me medicate, I could never live with myself if something happened.

I think it is this feeling of ‘crazy’ that is bringing back all kinds of junk from my past. I find in this state I can remember things that happened when I was in this state before. I’m sure it is because I don’t have the mental resources to block it, but also I think you just connect to those feelings better when situations are similar. I have been having very realistic and upsetting dreams about old things and potential new things. Since the meds I have started to ‘unpack’ my night with tea the next morning and put everything away so I can focus on my baby and the (seemingly endless) daily chores without being distracted. It is helping.

I think G and I are still bonding well. Hubby and I are trying to find little moments together now that my sister has come to help out (a total godsend!) and we are less snappy with each other. Overall things are not burning down. They are not ideal- but what life ever is?

The lid is off

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!

Nesting

Holy crap people- “nesting” is a legit thing!

Our baby furniture FINALLY arrived and I had to almost immediately put it together. But I couldn’t stop there. I had to put out the blankets and put the clothes in drawers. I set out some of the cloth diapers with wipes and lotion. It was like I was possessed! I couldn’t stop until the room was done. Now I go in there and just sit in the rocker looking at everything. It’s all so goddamn cute and I am beyond excited.

Also, ‘we’ are re-doing the fence and shed. I am basically useless at this point, so I make sandwiches and ice tea. Unfortunately, this is a long and messy process. So my beautiful backyard is completely filled with lumber and garden equipment. This chaos outside really motivates me to make the inside perfect so I have a ‘safe space’ to be calm.

By the way, I may have to just be pregnant for the rest of time. I have not felt this good in YEARS, perhaps even a decade! Of course I get the regular pregnancy things- but those are all physical and easy to manage. My MIND is in order. If I want to do something in a day- I just do it! I have the energy and the drive. My anxiety is so low I can just ‘pop up to the store’ without planning it in minute detail all day and then chickening out when hubby offers to go.

I am doing so well my psychiatrist and I agreed that we would try a decreased dose of Lithium. Lithium is the only thing preventing me from breastfeeding. This feels important to me. I have carried these cannon balls around since 6th grade so I want them to have a purpose. Also breastfeeding has many other benefits and is FREE- so I’m all over it.

I have to remember this is just a test. We are going to decrease until symptoms come back. But a little piece of my brain says: they won’t come back! Well, who knows? I’ve spoken with women off meds for years before a life stress makes them nuts again. Maybe that could be me? I’ve certainly learned how to care for myself.

Stability

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.

Keep fighting.