mental health, Uncategorized

Sleeplessness and the bureaucrat

I shouldn’t be doing this right now. I should be trying to grab some precious ever elusive sleep but I can’t. My mind is stuck reevaluating with increasing disbelief, the interaction I just had with the front desk of the mental health conglomerate that I go to. Here is a word for word transcript, annotated with my escalating unimpressed thoughts.

Me: Hi, my name is ___. I’m a patient of ___ and I have had insomnia for three days.

X: And how can I help you? (in a tone that said, yeah what about it?)

In my head: wow empathy must not be your thing.

Me: I need to schedule an appointment to see her.

X: Ok. (she proceeded to get the information she needed to look up my chart and schedule) Well your next appointment isn’t until March so how about the 22nd of February?

Me: I don’t think so. I’m missing work I can’t go sleepless until the 22nd .

X: So you’re looking for a med increase.

In my head: what did you just say to me?

Me: I’m looking for a solution. I’m certainly not chasing medication if that’s what you’re saying.

X: How about 2:30 on the 16th.

Me: How about something today or tomorrow with anyone who’s available.

X: Are you available at 2:30 today?

Me: Yes that would be perfect.

During the subsequent wrap up I got her name so I could report her because I don’t take this kind of shit anymore.

So let’s just recap: A patient called and said they weren’t sleeping. She had an appointment open for today and she tried to schedule that patient for three weeks from now. Did I mention she had an appointment open today?! That isn’t just a lack of empathy but a lack of ethics.

While it’s not an uncommon occurrence in mental health patients, sleeplessness in my book and among the medical community in general, is a very big deal. Lack of sleep leads directly to decrease in cognitive function and motor skills, not to mention the fact that lack of rem can lead to suicidal behavior. Here are just a couple articles about the effects of lack of sleep.

“Depressed patients who experience sleep disturbances are more likely to think about suicide and die by suicide than depressed patients who are able to sleep normally.”  From and article from Harvard.

“This study showed that REM sleep has a critical role in facilitating brain plasticity. ” from an article looking at a study of the effects of four days of sleep deprivation.

 

I attempted to go back to work yesterday after finally achieving 7 hours sleep in 48 because I love my job. But my job requires a level of concentration and reasoning skills that I was unable to bring to bear with my head spinning. I was not sharp. I could not focus and I sent myself home after just 3 hours because I recognized that I could not wrap my head around things that I had been fully on top of the day before all this started.

I wonder how many patients without the benefit of my bullheadedness, without my ability to tap into my well of petty wretched spite in order to not cave to people like that, would have taken the appointment three weeks from now and suffered. What if that patient then had an episode. What if they spiraled so out of control that they harmed themselves or killed themselves. What if they fell asleep at the wheel?

Bottom line this type of soulless behavior is not acceptable in any profession but so much less so in the medical world. As bad as my regular doctor’s office is, they have more compassion than that and mental health patients don’t need less empathy they need more because we are often at a diminished capacity to care for or advocate for ourselves. We don’t need anyone else making our lives more difficult and we don’t need someone taking advantage of that state to pass off sub par care. My opinion as of today is that if you don’t have a mental illness and can’t score really high on an empathy test, then you shouldn’t be allowed to be the front face of a mental wellness office.

The chief reason I see the nurse that I do and have changed practices every time she has, is that she doesn’t dole out scheduled drugs like candy. When my previous nurse had continued to up my klonipin to help me sleep without looking at other options until I was on the maximum dose and simply dependent on the drug, it was this nurse who took the time to ween me off it. She found a safe alternative which I was a little shocked to find was an old drug that frankly my other care providers should have been knowledgeable about and I feel should have been ahead of habit forming drugs on the list of possible solutions.

I have specifically chosen with no small degree of difficulty to pursue a course of medical treatment that avoids anything habit forming and the implication that I am some how looking for a fix was absolutely insulting to me in every way possible.

I bring this up to illustrate that what we are prescribed is not our fault. It isn’t within our control that someone we think is looking out for our well being is just handing out the latest thing the drug rep told them was a good treatment. We come to professionals because we don’t have the answers. This isn’t the first time a receptionist has done more than insinuate that I was chasing medication. I’m not sorry that yes, in the same way that I insist on having my blood pressure treated or my Lyme disease treated or a broken leg treated, I insist that I have access to the medically proven solutions for the problems with my brain. I don’t put up a stink that I have to check in every 90 days so they can bill my insurance for a visit that isn’t necessary if nothing has changed. I do however expect that when something does change and I need to come in sooner, as my nurse always tells me to do, that I am treated with dignity and respect. I don’t think it needs to be pointed out that everyone regardless of their medical needs deserves to be treated with dignity and respect.

It is not the job of a scheduling drone to judge what I do or do not need. That is why the professional I see in the office has a degree and she does not. It is not her job to do her level best to keep me from being seen as soon as possible. It is not her job to decide if I have addiction problems or not. Someone who does have addiction issues probably really really needs an appointment asap wouldn’t you say? Someone’s medical needs are not a character flaw and they are certainly not an invitation to make judgments about that person and never an excuse to act on those judgments by doling out your version of the law.

I have observed in myself and those around me as a bank teller that the authority to say no to someone corrupts pretty quickly and a tendency to say no without really considering the situation takes root. This is simply a human failing but compassion is a human responsibility and if you don’t have it you at least need to pretend and if you can’t even do that, then you have no business interacting with people who need compassion which by the way is EVERYONE in the world.

It is my assumption whether it’s a good one or not remains to be seen, but my assumption is that this practice as a whole has a low opinion of people with mental illness and thus doesn’t really require sterling behavior from it’s staff. It’s easy to declare a group of people second class citizens and then have little compunction about treating them as such.

As for my sleeplessness issue I have found that as the light returns I have more and more mania and anxiety at night which becomes a self perpetuating thing. Fear of lack of sleep leads to lack of sleep etc. Needless to say the dark of winter has become my favorite time. Spring and summer mania are not fun. Now I’m off to advocate for myself. Keeping yourself well is bloody hard work.

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Dream Logic

Coll-GuideV7 

This is what happens when I wake up in the morning, drop the ferret off for surgery and go back to sleep. gotta love dreams that are so mundane they could be real life but are also completely bizarre and frustrating at the same time.

“sorry I was late back from lunch everything got lost and I was fighting with someone over text, I think. Hey where is my monitor?” ( I really should have asked why the teller line was suddenly on the outside deck of an ice ream parlor from Whitehorse circa 1991.)

“Someone smashed it against the outside wall.”

BrokenMonitor

“seriously?! I was gone for 30 minutes and someone committed an act of violent vandalism. WTF? And where are the cops and why does no one seem to care?” ( I should maybe have also asked my co-worker why she was wearing my c-pap mask or at least remarked on us being twins.)

Whatever. I guess I need to spend a bunch of time searching this creepy building for a new monitor.”

antique-radio-shop-kunming

comes back empty-handed after an eternity of searching dusty interconnected rooms with radios that literally turn themselves on when you get within two feet of them.

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well that’s a no go. All I found was this dog that won’t leave me alone. I’m sure he’s nice but he keeps using his claws on my arm. Can you take him? Thanks.”

Oh and am I the only one who’s noticed that the floor boards in the front entry way are falling in? Seriously there are holes that could swallow entire children and I thought I’d better mention it because there seem to be swarms of children everywhere for some unknown reason.”
Literally no one cares.

you know what? I don’t care either. I need to find my purse and this other purse that somehow ended up here and this other random thing that I just can’t live without that is buried in this maze of dusty rooms full of antique furniture. What the hell is with these radios? Is that news from the 1930’s because that other one was definitely playing music from the 1940’s.”

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“I am going to have to ask someone about this. Holy shit!!! where did this vacuum cleaner come from and why is it attacking me? How come it is upright and also has a long hose connected to a bag thingy?”

“Wait-Why does this feel like one of those dreams where you get lost trying to retrace your steps and constantly get lost? Finally a room that looks familiar and has a clear exit to the outside. Oh and there’s Dad maybe he can explain that radio phenomenon.”

A long conversation with my father and a woman from Ireland who I’ve never seen before but is clearly an old friend of the family. While we can talk in-depth about changes in technology and radio programming and TV cable packages neither of them seem to know or care about radios being motion activated in this possibly haunted hell hole. In fact they seem to think I’m weird for even posing the question. Maybe this shit doesn’t happen to everyone.

That’s it I’m just going home but oh shit I can’t leave without putting my cash drawer away. Ummm if the entire counter is gone does that mean someone already put my drawer away? They would have had to be in dual control and that must have been a pain. Should I find someone and apologize? Seriously the whole thing is gone? Time to GTFO. Just as soon as I go back to that place where I stashed all my stuff and grab it because why they hell would I put it down in the first place?!”

bag-heap

Frustrating search through piles of lost and found crap and more getting lost and losing things I just had a second ago.Forget the radios. Why are random kids from my high school playing the weirdest game of hide and seek ever? Who makes ghost noises during hide and seek? Is that Draco Malfoy?”

and we’re back. 

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Uncategorized

A perfect Night(wish)

I just returned home from an incredible overnight trip to see my favorite band. Nothing blew up, no one got hurt, there was no fighting and I only cried when they played my favorite song. This is in stark contrast to when I saw the same band in a venue slightly closer less than a year ago. The difference? Planning.

Last time I didn’t take the time to do the research I needed to make that a smooth trip. Last time was about refusing to stay home even though my escort fell through. I focused on taking my time and trying to relax rather than doing the research to have a plan and a fall back plan. It was stressful. I was late, my view was terrible, I felt awkward and out of place, I got lost trying to find my way back to the parking garage, (yes you read that correctly). The best thing I could say about it was that I got there and back without getting into an accident and there were moments where I enjoyed the show.

Mistakes from that trip were:

  1. Not making a real plan for parking. Venue parking is never big enough unless it’s a dedicated garage so if you plan to use it get there super early and not halfway through the second act. I know this. I really should have known better. There was in fact a huge garage within walking distance which through the grace of the goddess and no plan of mine I managed to find at the last minute.
  2. Taking a purse into the venue. Seriously who takes a purse to a rock show? It makes you a liability in a crowd and if you have any kind of care for the people around you just makes you feel in the way, which a person with anxiety in public really doesn’t need more of.
  3. Planning to be late. I fooled myself into thinking that if I took my time getting there and put no real time restrictions on myself I would be more relaxed. Wrong!

Basically by refusing to look at what could go wrong and simply telling myself if I didn’t freak out everything would be fine, I seriously missed the mark. I was therefore extremely lucky when the band, who are based in Finland, decided to tour North America again. This time I made sure I secured an escort and made it clear that we were prioritizing our view. Just to give credit where it’s due this is not my husband’s favorite band. He went with me to be supportive and visit a friend in the area.

I planned an outfit for functionality not style because really if you’re not on stage it does not matter what you look like. In short I had pockets for everything. The more self sufficient I can be the better equipped I feel to deal with unknowns. What do you really need to enjoy a show? Your tickets to get in and your id, also to get in.

We booked a hotel and my husband sourced restaurants that were celiac safe.

Most of all we planned to give ourselves tons of extra time. We left home at 10am, plenty of time to get to town, meet a friend for late lunch order more take out for post show food and shower before the show. We left the hotel with enough time to park, realize we were parked illegally and repark all without missing the opening act.

The key to all this was putting my husband’s and my skills to good use. Jeff is great at doing very thorough research. He didn’t just find a restaurant with “gluten free options”. A salad is not viable option if that is all their menu can accommodate you on. He made sure it had lots of options, enough that we could get lunch and take out to eat after the show because his research had shown that there would not be anything open after the show. I knew from experience that attempting to eating out at dinner time before a show is too stressful for me. You can’t count on getting in and out of a restaurant quick enough to get where you’re going, unless the restaurant is close to the venue which in this case we knew it was not. There’s just too many variables for me.

This is where all my worrying can be put to good use, time management. Because I assume something, or multiple things will go wrong if I have control of the time table I can account for those variables and leave a pretty decent cushion. If you plan to leave time you also don’t have to rush. I used to be fine with rushing but Jeff hates it and I have learned that it is actually less stressful to not have to and it’s also better if you don’t forget things like tickets and cameras and phones. So he likes to go at an even pace and as long as we start out with enough time to spare we both get what we need. Leaving an hour before the door opens when you are fifteen minutes from the venue might seem extreme but I think the proof is in the pudding on this one. The parking at the venue was already full and like I said we fucked up and had time to fix it well before the doors opened. Long story short, our car was where we left it when we got out of the show.

Recognizing that just going with the flow isn’t a viable option for me actually makes things go smoother. Rather than focusing on manufacturing calm I create a better chance that nothing will make me nervous.

Now is when we get to the payoff of little things going right that we couldn’t plan for. The venue, the Webster Theater was great. About 90% of it is open floor space, so even when the crowd was at it’s height we had room to move. Nightwish has some of the nicest fans in the world. We staked out a spot early and people around us were polite and genuine which when you stop to think about it is what you would expect. That is if you’re not stuck picturing the worst all the time. Regardless of what else separates you from the people around you at a show you at least know you have one thing in common and everyone should be pumped for the same reason.

The staff were on top of their game. There was about 30 seconds of moshing during one of the opening acts before it was resolved without anyone having to be thrown out. There is no moshing during the epic aural journey of Nightwish. If you do you’re doing it wrong.

Finally and most importantly they played a different set list than last time which meant that Marco’s solo piece was my absolute favorite song, While Your Lips Are Still Red. It was a lot nicer to hear it with my hubby with me rather than all on my own. That was just the planets aligning right there. I was able to lose myself completely in the experience the whole show and that is not just rare. It literally never happens to me in public. The whole trip was a complete success, something else I can never really claim. There’s always some qualifier; perfect but for this moment of panic or this snit fit or glutening myself. This was actually perfect and if it can happen once, it can happen again. Since my husband left a fan, the word legends was thrown around, maybe we’ll get a chance to do it all again.

 

 

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Uncategorized

Anxiety

Bipolar is a set of traps. One is the slippery slope of depressed self loathing, where you recount to yourself all the ways you are a failure, unlovable, and finally an unsolvable mess completely unworth of saving. The other is a speeding upward corkscrew of racing thoughts, social paranoia, rage traps, physical symptoms, and finally a paralyzing force that leaves you immobile staring at a wall or tv. The worst part is that they are codependent. They are wrapped around each other as tightly as the strands of you DNA and they can tap into each other’s lies to perpetuate their hold on your mind.

Anxiety is an asshole. It wants to sabotage you. It wants to make you its slave minute by minute. It wants to trap you in a mental loop of anxious rambling thoughts so all you can do is stare at the wall while your mind churns.

Anxiety will convince you that the worse possible case scenario is happening right now. It tells you to assume the worst about everything that is happening and everyone’s intentions. It wants to make you paranoid. The person you just texted is ignoring you intentionally. Your friends are so uspet by your erratic behavior that they don’t want to talk to you. No one will understand the person behind the disease. Your inability to act “normal” will alienate everyone. There is no way to ever come to terms with the stupid things you’ve done and said while in its grips. There is no way you can ever be sorry enough for people to forgive you. You deserve to replay every mistake you’ve ever made and permantly live in a state of shame for all the nasty things you’ve said in anger when you were actually terrified and couldn’t identify it because anxiety was shouting in your head that it was someone’s intent to hurt you and therefore you should lash out at them.

The anxious mind is not scared of anything in particular but everything at once. A person with clinical anxiety is literally afraid of fear itself and that is a nearly impossible thing to break out of. It paralizes you. All you want is to feel better and you cannot think of how to get there. You can’t get your mind to stop haranguing you for past wrongs or shouting that someone is out to hurt you. Meditation is the most frightening proposition because you can’t calm your mind. You literally cannot shut it up.

Imagine a hive of bees has taken up residence in your upper abdomen. At the same time an invisible hand is squeezing your heart. Your skin feels too small. You are dying to get out of your body. If only you could outrun the feeling. If only you could jump out of your own skin. If only you could get your head to stop screaming at you or stop the tide of uncomfortable images parading past your inner eyes. You feel every single ounce of shame you have ever felt in your life all at once. You must get control you need to get control of yourself. You know you’re outer behavior is about to match your inner madness but you can’t seem to stop it. You can’t get a grip on your emotions. You mouth is no longer your own. You know you about to fuck up, about to fuck up. All you can think is you are about to fuck up everything. Just think how terrible you will feel then. This feeling of dread is nothing compared to the regret of acting strangely or worse angrily. You’re so angry about not being able to get control back that it is going to come out on the nearest person.

You can’t let that happen but you can’t get away. You try to leave the situation but the feeling follows you. You know your next personal interaction is going to be a bad one. Your skin is prickly. You can’t concentrate. You can’t find a solution. You cannot get out.

Anxiety doesn’t want you to know your fears are unfounded. It doesn’t want you to find out that there is a way around this gloomy immediate future that it is laying out for you. If you could find a way out you could break the cycle and it would lose its hold on you. You’re afraid to talk to a doctor about it because you know the drugs used to treat anxiety are addictive and people will look at you strangely when you go to fill your perscriptions, receptionists will treat you badly. Doctors will think you’re just looking for a fix. Remember what happened last time?

Remember that time you embarrassed yourself when you were six years old? Let’s feel that again and every slight you’ve ever been dealt. Your boss is going to fire you. Your husband will hate you. Your sister will stop talking to you. Everyone you love will leave you. Remember that other time when someone rolled their eyes at you? That’s about to happen again. Protect yourself. Strike before they can get you. Run away. Call out sick. Don’t let it happen again but you know it’s going to. You can’t stop it. It’s inevitable. This is you.

Anxiety is a con artist selling you on the idea that a chemical imbalance in your brain is you. You are broken and can’t be fixed and the safest thing for everyone involved is to stay in your house. Want to keep people safe? Don’t interact with anyone. Don’t speak. Don’t act or you might hurt someone. Just sit here and stare at the tv or the wall. Just sit here and think and think and think. There is nothing you can do. Just find a way to numb out enough to face your next breath. Don’t even dream about being able to feel good. Feeling good is for people who aren’t assholes and you are definitely an asshole. Remember what happened last time? Remember? Remember. That is all you’re good for is to play your mistakes over and over and over and over.

Why can’t someone just snap you out of it? Why can’t you just snap out of it? It’s all in your head right? You should be able to control this. You should be able to make it stop. Just calm down ok. Don’t feel bad. Just don’t be an asshole. Don’t freak out. Don’t freak out. Don’t. Freak. Out.

Anxiety is that feeling at the top of the rollercoaster but the roller coaster never drops. There’s no relief. You may ride out and around a couple spirals but then you find yourself stranded at the top again looking down with that sickening dread. At the same time you’re certain someone has stranded you here intentionally so they can laugh while you squirm. You’re ashamed because you can’t move past it. You’re experiencing every moment of embarrassment all at once and your racing mind keeps screaming around the same uncomfortable track.

But you are not your axiety. Every day you survive in spite of it, every moment you carve out as your own, every second you can feel good is a blow against an enemy inside you but it is not you. Remember that. It is not you. It is a medical condition. It might take a few tries but you will find a doctor or nurse who understands that narcotics are not candy and that there are other ways to treat this disease in your brain. You can feel calm. You just need some help. It is out there. Don’t fight this fight alone.

PS. (edit 02/26/16) I was extremely remiss in not including a link to the inspiration for this piece. Here is the blog post from Wil Wheaton on depression. I found it incredibly inspiring as I always do with his contributions to the world.

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It’s not all in my mind. It’s in my brain and there’s a difference.

********DISCLAIMER********

(Bipolar and other mood/anxiety disorders manifest in different ways for different people. The following explaination is based solely on my experience with Bipolar/anxiety.)

The first thing you should know about Bi-polar is that it is a disease which means just like any other condition certain things are more difficult for a person who has it than it is for you. For instance, not worrying is way more difficult for someone with bi-polar or any other anxiety related disorder than it is for someone without it. The worst thing you can say to a person with bipolar or anxiety is “Don’t worry about it so much.” They can not stop worrying just by taking your advice. They are chemically predisposed to worry and in a way that you cannot physically understand unless you have been there. Even if their medication is correctly prescribed and present in their system it may not be possible for them to “calm down”. Believe me they want to be calm more than you do. You don’t have to feel what that worry feels like on the inside. It hurts. Sometimes it prickles on the inside. You feel like your heart is going to jump out of your body. Sometimes you feel like you are stuck on a treadmill and you cannot get off. Your head literally feels overfull like it can not contain the activity going on inside it. There is a physical reaction inside our bodies that we can feel. Yes we all worry at some point and yes we all get stressed but stress you can wash away with a shower or a glass of wine is not what I’m talking about here.

We need you to understand that. Anxiety is not an abstract concept for us. We can not will it away. If we could none of us would be sick. Why would we choose to be this way if we could be otherwise? It is in our bodies. Unfortunately it’s also in our mind, our brain and it is beyond our control. Like the sometimes subtle sometimes teeth rattling micro seizures I have, it is beyond physical control. I cannot stop the ripple of motion that starts in the base of my spine and snaps my head back. I cannot stop the tremors that make my legs kick etc. But I can feel it coming on. I know when my body has had enough and I’m in for a bout of seizure, the sheer exhaustion of working eight days in a row on my feel for instance. I know if I don’t get enough sleep all of my symptoms will be worse. This does the opposite of help me sleep. I know its a shocker. But once I am short of sleep my anxiety gets worse and it is harder to catch up on sleep, which makes my anxiety worse. Knowing the pattern does not give me any amunition to fight against it repeating or perpetuating. When I am short on sleep I am more likely to cry over nothing. The fear of dissolving into tears at my place of work, or in the grocery store is completely valid as both of these things have happened multiple times. Honestly the stimuli may be infantessimal but it prods the wrong nerve at the wrong time and boom, tears. So now I’m tired, I’m crying in public, I’m embarrassed about it and there is still something I have to do, like shop. But knowing the signs does not make me able to stop the symptoms. I can hide in the house but when the cupboards are bare and you just have to go to the store or you have to put your game face on and go to work you just take your meds and pray for the best. Are you starting to see the tangled web that is my behavioral existance? When I am short on sleep the filter between my mouth and my brain gets thin and its more likely that I will say something unkind which will make me feel horrible which may keep me up at night and will certainly add to my anxiety. Again to a person who only understands anxiety as “worry” this makes no sense. Just snap out of it. But we can’t and that is what makes it a disease.

Now not only are they anxious but you are making them feel like they should be able to do something about it. They can’t. They know they can’t so now they are anxious and they feel inadequate for not being able to control the symptoms of their illness. And you have no way of knowing that and you are just trying to help. We understand that but sometimes, just sometimes, it gets to be too much to be sick, uncomfortable with racing thoughts and racing pulse and then explain to someone else how they’re not helping at the same time. The stress of making your symptoms understood as something more than just being “weird” or “out of control” on top of being unwell is astronomical. I have a good medical regimen and a great nurse and it is still difficult. How hard to think it is to try to advocate for yourself while in the grips of crippling anxiety and imsurmountable mood swings. I don’t even like to think about how hard this was before I was diagnosed and treated. But my family, my partner and my support network remember and they are a good guage of just how far i’ve come.

The real kicker is that no matter how unconrtollable our symptoms are they run exactly contrary to what “polite normal” behavior is. So support, understanding and kindness from outsiders is very rare.

What I’m really saying is that navigating society with a mental disease is difficult and regardless of how I falter I believe that some great spirit is paying attention to the added difficulty rating of seemingly mundane tasks and keeping score for me. I hope to cash in these afterlife bonus points for a relaxing life next time, maybe. Maybe I feel more accomplishment this way.

Post Script: if the frenetic pace of the writing makes you feel out of breath, you have just experienced the barest hint of an anxiety attack. I hope the experience was illuminating.

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