Thursday, October 18, 2018

Some Halloween Reminders

I love Halloween. More specifically, I love costumes and any excuse to dress up. I love seeing how creative people can get with costumes. Kids dressed up in their cute costumes are adorable. Dogs dressed up in costumes are possibly more adorable. But there are some things about Halloween that can be incredibly difficult for those with chronic and mental illness, as well as those who have experienced trauma in the past. It's super important to be mindful of this. I'm not trying to crush everyone's good time, but we have to consider that not everyone is up for the same celebrations as us. Here are a few thoughts.

Scary Attractions:
  • Many, many Halloween attractions involve people jumping out and scaring participants. This may even include touching/grabbing participants, or getting super close to them. This could be a massive trigger for a  someone who has suffered an assault or an attack. And while I can't personally speak to someone having been in combat, I'd imagine that people jumping out and grabbing them/surprising them could also have negative effects. 
  • Loud noises can be triggering. Those with PTSD, those with anxiety, those with sensory issues can be especially affected.
  •  Crowds/groups in tight quarters. I can tell you as an anxious person with claustrophobia and heightened sensory perception, dark spaces packed with people (especially dark spaces packed with people where things are going to jump out and try to make me shit my pants scare me) are NOT places I want to be. 
  • Not everyone loves surprises. Again, for those of us with anxiety and numerous other conditions, these can be traumatic. It doesn't have to be a tourist attraction. Don't hide in a dark corner dressed up like Freddy Kruger and jump out at me at home either. This isn't limited to "jumping out" surprises. I often post around April Fool's Day, explaining that those of us with anxiety can really be affected by "negative" surprises. If the idea is to frighten, scare, alarm someone, and their brain does this naturally without any outside input, it's probably best not to do it. 

To clarify, I'm not saying that these things shouldn't exist. I'm not saying you shouldn't go to "haunted" house/attractions (exception: keep reading). I'm not even saying not to invite us - after all, everyone's different, and just because someone has anxiety, it doesn't mean it'll be a trigger for them. But it could, so be mindful. Don't force someone to go or make them feel bad for not going. Remember, they don't owe the world, or anyone, an explanation. If someone says "I'd rather not go, that's not really my thing", that needs to be enough. Bugging them until they reveal that it will trigger a past trauma, and only then letting up on them going, isn't OK.

While we're at it, a few other reminders of things that aren't your/anyone else's business:
  •  Why someone isn't drinking at a party/gathering/etc
  • Why someone isn't eating all the candy (or anything else)
There are many reasons why people don't drink or eat certain things. It could be illness, an allergy, or it could be a whole host of other things including..... maybe they just don't feel like it! Please don't judge someone based on their lack of alcohol consumption or their dietary habits. Peer pressure wasn't cool in middle school and it's not cool now either.

I really feel this can be summed up in three words: have some tact. Mental illnesses, chronic illnesses, and disabilities are real, every day struggles that people go through. Not costumes. And yes, I've seen costumes for all of the above being sold online. It's disgusting to me. And yes, I get that any costume could probably offend anyone, but putting on my mom's old bell bottoms and a headband and going as a hippie isn't quite the same as dressing up as someone with a serious, even potentially fatal, illness.

Asylum Attractions: 
I can't speak for the community at large here, but I can speak for myself and my opinion on this topic is very strong. Do me a favor - before you go to one of the "asylum" attractions, read up on the history of "insane asylums". Read about how people were treated - by which I mean often abused, tortured, and in some cases even killed or left for dead. Read about how people were experimented on without their consent or at times without their knowledge. If you're cool with all of that, then sure, go ahead and give these attractions your money. Also know when you do this, every time you support something that makes a caricature out of mental illness, you're actively supporting stigma.

Tuesday, October 16, 2018

Mental Illnesses Are Not Adjectives (And What To Say Instead)

Whether you have a mental illness or not, you've almost certainly heard one of the following (or something similar):

"She can't make up her mind. It's like she's Bipolar".

"I'm so ADD today".

"I'm a little OCD about xyz (insert task/organizational strategy here)".

If you do have a mental illness, hearing someone throwing around your illness, that you struggle with daily, as a colloquialism, and then them laughing about it, can be frustrating to say the least. Not to mention, these are the types of actions that continue to spread stigma about mental illness. The thing is, if we inserted physical illnesses in here, people would probably be pretty taken aback. For instance:

"She can't do xyz, it's like she's asthmatic!"

"I'm so cancerous today". 

"I'm a little diabetic about xyz"

The thing is, it's not cool. And people seem to know not to do this, because they get that making a joke out of cancer is pretty inconsiderate - especially around anyone with cancer (but really, just in general).

Unfortunately, using mental illness as a phrase that can be tossed around to (inaccurately) describe someone's behavior has become so common that I don't honestly think (some) people realize they what they're doing. They don't think about the fact that they may be sitting next to someone  whose ADD is really causing them trouble today, or speaking to someone that does have bipolar disorder. They don't realize they're furthering the stigma by doing so. So I thought it might be helpful to offer some alternatives, the next time you catch someone saying something along these lines.

What people say:  "I'm so depressed because I have nothing to wear to my friend's wedding this weekend" (specific example, but the point is, people say "I'm so depressed" when they really mean "this is a bummer/this is kind of an annoyance")
Alternative: "I'm frustrated (bummed/annoyed also works depending on context), I have nothing to wear to my friend's wedding this weekend."

Why:  Depression is a serious illness, not a minor inconvenience. It can often make people feel hopeless, worthless, empty, and even question the point of their lives. Comparing this to not having the perfect outfit (to some other day to day issue that's not actually related to ones serious health) is minimizes what we go to, and it gives heed to the idea that it's not a serious illness. (i.e. furthers stigma). When you use depressed when you really mean a more minor feeling, like bummed or annoyed, it furthers the idea that really, someone with depression could just look at the positive side of things (insert annoying and inaccurate cliche here) and be all better. Because surely, if all it takes is having the right outfit, depression couldn't be that serious, right?

*Note: As someone who's struggled with body image issues and disordered eating alongside depression, there could be situations, if someone struggled with these, that this type of statement is legitimate.  Maybe trying to find something nice for a wedding triggers their body images issues and eating struggles, which can in turn affect their depression.  But if that's the case, it's not said as an off-handed comment while discussing outfits.

What people say: "She can't make up her mind, it's like she's bipolar".

Alternative: "She can't make up her mind", "She keeps changing her mind". Just end the statement there. It's just that. It's not like anything.

Why:  There are so many reasons I really can't list them all. But I'll try.
  • Bipolar has nothing to do with not being able to make up ones mind. Depression and mania aren't decisions. They're parts of a mood cycle, not intentional changes in action, thought, or words.
  • Nobody changes their mind (or anything else) mid-sentence because they're bipolar and have suddenly cycled. It doesn't work like that, even for the most rapid cycling mood disorders. 
  • People with bipolar disorder struggle with symptoms that can be debilitating, and life-altering at times. Simplifying it to not being able to make up their mind completely dismisses how serious and difficult this illness can be.

  • Nobody "is bipolar". They have bipolar disorder. This could be said of any mental illness - or any illness in general. It's not a personality trait, it's an illness.

 What people say: I'm so ADD today.

Alternative: I'm having difficulty focusing/concentrating today. I'm easily distracted today. (These are the ways in which it's most commonly said).

Why: The symptoms and challenges of ADD involve more than being easily distracted. Sure, to the general population, being distracted often may be slightly annoying, but ADD involves a multitude of symptoms that can often make school and work tasks particularly challenging. There are a lot of things that can add to our inability to focus these days - like having 100 different pop up notifications for 10 different social media apps on three different devices coming at you all the time. That's a product of our society in the 21st century, not having a medical condition. It's minimizing what someone with ADD goes through to interchange the two.

What people say: I'm a little OCD about xyz.

Alternative: I'm a little particular about xyz (this is what people usually mean).

Why: OCD can be debilitating. There are people who struggle with OCD who have difficulty even leaving the house, or who have to take hours extra in order to do so.  It can also be a disorder that causes social isolation, both because of how the person feels in social situations, and because of how others react to their disorder.  When people use this as a throw away phrase, they generally mean they're super particular about something. They also may mean that they're extra-organized. But I honestly can't think of a time that being extra-organized caused someone to feel unable to leave their house, or to feel socially isolated. (Note: info given here comes from those I know who do have OCD and have explained it this way). 

What people say:   "My ex-girlfriend was a schizo!"
Alternative: There's not one really. Just stop bashing your ex because it didn't work out.  Also, name calling should be left on the playground. Honestly, it doesn't even belong there.  
Why:  Schizophrenia might be one of the most misunderstood illnesses in terms of mental health. When used in a derogatory way (above), it is used often as a catch-all to describe behaviors that people just don't get, or to describe people they don't like.  I've never actually heard someone use this in describing a behavior even remotely related to actual symptoms of schizophrenia.  I suspect if you ask the general population what someone with schizophrenia experiences, they'd have very little (accurate) idea. And yet they throw it around as an insult. More than any other, this tends to be used as a general bash at someone (much like the word crazy). Which is just mean, whether you're using the name of an illness or not. Let's stop nastily bashing people shall we? Just in general. But also, by using people's serious illnesses as insults. 

If you really aren't sure what to say, just stick to this rule: when in doubt, avoid using any medical term/illness to describe someone's behavior.

Finally, a PSA as we close in on Halloween: I cannot believe I have to say this, but mental illnesses, illnesses in general, and disabilities, are NOT Halloween costumes. I'm all for dressing up, but think it through, please, before you decide what to wear.

Thursday, September 20, 2018

As I Close In On The Final Days Of My 38th Year

If you aren't aware, I love birthdays. My birthday, your birthday, my dog's birthday, your dog's birthday. If it's a birthday, I love it.  Why? Well first off, it celebrates life, and as someone that so passionately advocates for life in my suicide prevention efforts, I think making it through another trip around the sun and still being here, even with all you've had to endure, is a pretty damn good reason to celebrate. Also, here's the thing: unless you're a twin/triplet/other multiple birth, or share a birthday with someone you're likely to celebrate with, your birthday is the only day of the year that's ALL ABOUT YOU!! I mean granted, it's not only about you because somewhere in the world there are others who also have their birthday the same day (looking at you, Bruce Springsteen, who shares my birthday). But in your sphere,  your day is about you. It's not about your clients or your boss or your friend, or your dog or your cousin (OK my cousin and I have a birthday a day apart, so this is actually a bad example, but you get my point). It's about you.  And often, because you don't get to celebrate with everyone at once, you get to stretch it to a couple of days - birthday weekend, birthday week, etc. Hell, DSW sent me something in August that said "your birthday is almost here!" That's what I'm talking about! And the beauty of it being all about you is that if you want to spend your birthday/weekend/celebration time going to yoga or going out to dinner (if you can afford it) or gardening or sitting around picking your nose, that's totally your right. We spend so much of our time trying to accommodate everyone and everything, trying to meet those deadlines and get that work done and do those chores and tasks and do whatever else we have to do that we all deserve this time.You get to be Queen (or King) for a Day! (Fun fact: My Grandma Northen was actually on the show Queen for a Day years ago, which is what made me think of this phrase). 

I hope I enjoy my birthday as much as Grace when she learned there were fries in this bag.

But in addition to being a birthday celebration advocate, there's another purpose to this post. As I like to do each year, I wanted to take a look at my past 12 months.  Especially as we get older/have increased gravitational pull towards the earth especially in the curvy parts/forget why we just walked into the room or why we're not wearing pants add few more candles to the cake, I think it's easy to think of all the things we haven't yet accomplished, or where we hoped/thought we might be that we aren't yet. This can be especially true if chronic illness has prevented you from being and doing some of the things that you hoped to have been/done at this stage of life. But so much can change in a year,  that I think it sometimes helps to look at those things we did accomplish, or those positive changes that have happened in the last year, to give us a bit of hope that just because we haven't gotten there yet, doesn't mean we won't.

In this past year, I have: 
  • Gone on my honeymoon (it was a few weeks after our wedding, so technically, I was married in my last age year).  
Overlooking Lake Keuka in the Finger Lakes, where we honeymooned.

  • We've gotten three new cars (clarification: we got two new to us cars, one of which was totaled by someone who didn't stop behind me, and subsequently, I got an actual new car because it was actually cheaper with the Hyundai sale than getting a used one).
  • I left my part time job of four years, started with a new company, and then transferred sites with that same company. So my job has, essentially, changed twice in the last year. 

  • Traveled to Greece (Athens, Santorini, Crete)
My husband and I in Crete.
  •  Traveled twice to Spain - once with my cousin to Barcelona, Madrid, Cordoba, and Ronda; once with my parents, and all of us siblings and our families, to Catalonia.  
Hiking in Ronda, Spain

From the house we rented in Catalonia

  • Signed up and been accepted to Yoga Teacher Training (I start Sept 28th!).
  • Celebrated my first Wedding Anniversary.  
Cappuccino I got on our anniversary.
  • Had to titrate completely off all medications temporarily for private, personal reasons. And you might say "this is something to celebrate?" No, but the fact that I'm still here while being off all meds is. Honestly, other than celebrating my wedding anniversary, of all of my accomplishments this year, this was the biggest. It was by far the most difficult (I mean, traveling through Greece and Spain in luxury was tough, but....).

Actual photo of me off meds.

 In the Health Advocacy/Writing world, I:
  • Completed my fifth Out of the Darkness Overnight Walk for Suicide Prevention. 
Finish of this year's Overnight Walk in Philly, at the Art Museum Steps.
  • Had my advocacy work published on numerous sites, including The Mighty, where I officially became a contributor - a huge goal of mine.
  •  Became a Pioneer Member of the Savvy Coop, and was chosen to do an Instagram takeover for them. 
  • Completed No Stigmas Ally Training, and submitted work to be published there.
  • Had the first chapter of my novel (or one day novel) published in Wordgathering Magazine.  Putting my novel out there for everyone (or the 10 people obligated by blood relation, whatever) to see was super nerve wracking, as I never show anyone my fiction work. 
  • Been steadily working on getting over my fear of rejection and failure in submitting work and participating in advocacy projects.  But for the Overnight Walk, as I've done that before and it's not a "work to be judged" so to speak, every one of the above took huge amounts of courage to pursue. My goal in the past few months has been "go for it". I've had to tell myself, "The worst thing they do is say no." I've made an increased effort to 'raise my hand' when people ask for submissions, participants, and the like. This is huge for me, and something I am hoping to continue to become better at with time.

There were so many literal ups and downs this year - I have a rapid cycling mood disorder, and had to come off meds, after all. But I made it through, and I accomplished quite a bit. And building on that momentum, I have some pretty big hopes and goals for next year, which I'll be sharing in an upcoming post.

Thanks for all of the memories, 38! Looking forward to seeing what 39 has in store!

Tuesday, September 4, 2018

How Often Do You Ask For Permission?

Have you ever asked a question of someone - significant other, friend, coworker, parent, kid, pet, etc - and immediately afterward caught yourself asking, "Why on earth did I need to ask them that?". I do it, all the time. And to clarify, not any question. I'm not talking philosophical discussions or quizzo facts. I'm talking about asking permission for silly things that absolutely don't require it. Here are a few examples:

"Do you mind if I use the bathroom before I start on xyz?" Yes, I've asked probably every person regularly in my life, at one point or another, if they mind if I do essential things like use the bathroom.

"Is it OK if I wear this?" Not to anything specific that would impact the person/people, to clarify. Just to make sure they're OK with it, I guess. Because I'm always afraid I've chosen wrong somehow.

If I'm not asking people's permission, I'm asking their opinion, in almost a permission-y way. I'll be sending an email about something and read it out loud to them to make sure... that I know how to write an email? I don't even know why. I was the VP of communications for a big organization. I have a Master's in Marketing. I am a published writer. I know how to write and communicate. There's zero point in my painstakingly seeking approval from others for a basic email. But I'm so sure I somehow got it wrong that I ask, "just in case". 

I ask people's opinions on how to cook something as I'm staring at a recipe because I don't trust myself to even find a good recipe. I ask how to wash something as I'm staring at the laundry label, because I doubt myself. You get the picture. I'm always certain someone else knows better than me, in everything.

I'm a chronic permission asker. When you battle with depression, your brain often lies to you. It tells you that you're not good enough, that you don't know anything, that you're not capable. It tells you that if someone claims to know better, you should just believe them because really, what do you know? After all, your brain makes you feel anxious or depressed "for no reason."  (Note: this isn't true, the reason is an illness, but it's how depression makes you feel.) You've been convinced not to trust your views, your thought process. Because you often see things differently, more emotionally, it's easy for depression to convince you that you aren't logical and therefore can't possibly come to the right conclusion. Because of these lies, and the chronic low self-esteem and self-worth that often result, its easier to fall into permission and opinion asking as a default, instead of trusting ourselves.

Let me step back and take a moment to further clarify, I'm not asking about permission to do something that actually affects someone else. Of course, I'm not going to spend tons of money out of our joint banking account without asking my husband. I'm not going to make plans that include a friend without checking with them, or make plans on a Tuesday that don't include my friend, if we have a standing Tuesday friend-date together. I'm not saying we should live our lives in a bubble, thinking only of ourselves. Far from it. Considering others when it could/does affect them is just common courtesy.  I'm talking about things that, in all reality, don't affect another person's time, money, plans, efforts, etc. I'm talking about things that don't take anything away from anyone else. Most of the time, when I ask permission, it's not something that I'm asking out of consideration. I'm simply asking because it's become automatic - I never want to upset anyone or do the "wrong" thing, so I'm overly cautious about making sure everyone is OK with everything. And I don't trust my brain to make this type of decision.

The problem with being a chronic permission asker is that it further feeds the cycle of low self-esteem and self worth. The more you ask permission and opinion for these tiny mundane things, the tougher it is to do anything without others' approval. And if you do, and there's any disagreement/criticism/critique/it doesn't go right, it makes you feel like you should have just asked and listened to them in the first place. It becomes increasingly difficult to trust yourself, your thoughts, your opinions. Eventually, you become afraid to think for yourself, because surely, you'll be wrong. Might as well just by-step the "middleman" and go straight to the source - someone else. One day, you wake up and realize that you don't recognize your own thoughts or ideas. You don't recognize yourself. You're now this being made up of everyone else's thoughts and opinions. You're literally afraid to do basic, every day things, make simple decisions - even ones that you previously would have been confident in - without someone else's approval and permission, because your brain is so sure you'll do it wrong.

So stop. Stop asking permission for the things that don't matter. Nobody's worse off if you wear one shirt over another (assuming it's not their shirt you're choosing to wear). If you use the bathroom now or in 10 minutes. If you feed the dog or do the laundry or some other basic task now or in a half hour. Nobody's worse off if your wording in that email isn't exactly as they would have worded it (assuming you aren't strewing in profanities or inappropriateness or speaking on behalf of someone else without their consent... you get the point). If follow a recipe and it's not perfect ... well, it's not perfect. I'll eat something imperfect or order a pizza. It's just not that big of a deal, and it's not worth lowering your already low self-esteem by feeling like you can't trust yourself on these tiniest decisions and processes.

In constantly allowing others' permission or approval to determine your actions, thoughts, words, you're giving them control. And I don't mean control we all deserve - i.e. having a say in something that directly will impact us - but control they have no business having. As an adult human being, nobody but you should have control over your bathroom usage or which pair of jeans you wear or how you style your hair or anything else. It becomes a slippery slope - one that's dangerous for your self-esteem and self-worth. So give yourself permission. I know this isn't easy. Depression and anxiety don't want to let you do this. But it's so important. Listen to yourself. After all, you know you better than anyone else. And you're way more capable and able than your illness wants you to believe.

Wednesday, August 29, 2018

Life Coming Full Circle

It might not surprise you that I'm a full believer in serendipity. To be clear, I'm not a fatalist. Far from it. I'm actually pretty much of a control freak, and while I'm working on my woosah, I have a ways to go before generally just trusting life 100 percent. I blame it on not being able to always trust my brain. When you never know if you're going to wake up depressed, hypomanic, anxious, panicked, or feeling totally fine, it's kind of tough to trust the "out there"... whatever that "out there" is to me/you/anyone (not going to get into a spiritual/religious debate here so please don't go there). My point is, I don't believe I have no control over my life, but I do believe that sometimes, you can look at life and say, "Well, isn't it funny how that all worked out after all?"

To explain where I'm going with this, a little background. When I was 27, my now-ex-husband and I separated. I had just started my travel business less than a year before, gotten a storefront, and quit my jobby job. Our plan was to rely on his salary, some savings, and whatever small amount I made at first, until I got off the ground. Within a year, I was going through a divorce, living in my own apartment, and with a fledgling business that often required at least 50 hours in my office and plenty more at home. I was teaching group fitness and personal training for extra money. Granted, I was 50% of the decision that got me there (possibly more, in all honesty), but still... that's a lot going on. I was relatively happy, but also disjointed.

Around this time, I noticed that a new yoga studio was opening up almost literally across the street from my storefront. I had, gasp, never done yoga!  I was a group fitness instructor and personal trainer who had worked in the health and fitness industry for five years and had never taken a yoga class. Not one. Not because I didn't want to. I'm honestly not sure why. I think that, in fitness, as generally is true of me in life, I was scared of things I couldn't purely muscle through (once a gymnast, always a gymnast). And you cannot pure muscle your way through yoga (this is a lesson I'm still working on). Also, this was before I was diagnosed and medicated, but I knew something was going on with me.  Quite frankly, anything that calmed down the outside chatter had the serious potential to ramp up the inside chatter in my brain, and that was sometimes a scary place. So I had yet to set foot into a yoga class.

But, I vowed I was going to. I emailed the owners and mentioned that I worked across the street, found out when they would be opening, chatted back and forth. Still, once the studio opened, it probably took me a good six months to go over. I'm sure I made excuses, but I don't recall what they were. And then, once day, I ventured into a gentle yoga class. I was hooked. On the yoga, the studio, the fellow students (in a non-creepy way, I realize how that sounds. But I felt I'd found kindred spirits in class). I would take a long lunch hour and run across the street to the studio for lunch time yoga, staying late at my store to make up the time. A year or so later, a friend of mine in the class decided she was going to do the yoga teacher training. She asked if I wanted to as well. I didn't feel I had the money and time then. Or perhaps I just wasn't in a place that I was ready, and my brain substituted excuses. Still, I kept thinking "one day".

Eventually, life happened, I sold the storefront, and I moved (personally) across the bridge into Philly. I started a part time job, in addition to my business. I noticed that they offered yoga at my office. How nice, I thought! I should go - I've been missing being so regular in yoga. I figured it wouldn't be the same as "my" studio, but at least I'd have yoga nearby.

And lo and behold, one day I'm sitting there at the front desk, and who walks in but the owner of "my" studio in New Jersey. Surprised, we hug and she tells me that she teaches the yoga class at my office every week. Pretty incredible - I mean, the studios two places aren't even in the same state! I get back into taking yoga at work regularly and I'm hooked again.  Eventually, life happens (and this part is not my story to explain) and another instructor from the same studio begins teaching the classes at my office. I'm still hooked.

Inversions are my favorite.

Fast forward several years to this past February. I give my notice at my part-time-that-became-almost-full-time job. And within probably a week (guestimate, there was a lot going on at this time in my year), the application for the next yoga teacher training with "my" yoga studio went online. I applied the same day. I have a serious habit of talking myself out of things, mainly because I think I'll fail/be rejected/embarrass myself (OK I'm pretty used to the latter), and I find reasons not to do them. I didn't want to do that with this. It was finally time.

This past week, I was officially accepted to Yoga Teacher Training at The Grant Building (formerly Upcycle/Yogawood, formerly Yogawood - hence the website). Yesterday I got home to find an Amazon package with the assigned books for the training (I ordered them, to clarify - I don't have a secret yoga fairy godmother, though that would be awesome! It just made it more real).

I feel like life is coming full circle. I started yoga with this same studio (slightly different location) eleven years ago after my divorce. It helped me get through some pretty transitional times. Through ups and downs in life, location, career, I've stayed connected to this studio and its instructors. Last September, I got re-married.  And almost exactly a year later (a year and three weeks I believe), I'll be starting yoga teacher training at the studio where I uncertainly walked into my first ever yoga class eleven years ago, taking the next step in my yogic journey. Serendipitous.

Thursday, August 16, 2018

If You Wonder What It's Like To Have a Rapid Cycling Disorder, Watch the Whether

Not sure about where you live, but here in Philly, the whether has been fluctuating between drastically hot and sunny and Armageddon. This past week people were being rescued from roofs of their cars due to flooding on our major highways. Intense storms toppling trees, thunder pounding, lightening illuminating the sky.  And then twenty minutes later, I'd be putting on my sunglasses. Storms have been rolling through so quickly and tumultuously that streets are being flooded out in a matter of minutes when there were no clouds in sight just an hour before.

This, folks, is what its like to have a rapid cycling mood disorder. At least mine. Of course, I can't speak for everyone. Technically, rapid cycling is described as four or more mood cycles in a year. For me, it can be four or more cycles in a week, or even a day. Of course, this isn't always the case - and four cycles in a day is extreme even for me. But truly, I do go to bed every night having little inkling of how I'll feel in the morning. And even once I wake up, my mood often does not predict how I'll feel by lunch time, let alone the end of the day.

To clarify, it's not as drastic as they'd show in Hollywood, where I just completely do a 180 mid-sentence and you can't recognize me. In fact it's nothing like that at all.  I can feel the cycle coming on, when I'm awake at least. I'm especially on alert if I know there are contributing factors that tend to make me cycle - lack of sleep, for instance. Or too much external stimulus, a major change to my routine, not getting enough recoup time/self-care time. In these cases, much like watching the whether radar patterns, I can pretty well anticipate that I'm going to cycle.  But no matter how prepared you are, sometimes there's only so much you can do. You can try to time your day out perfectly, analyze all the weather forecasts, diligently study the radar, and still get caught outside when the skies decide to open up. Because sometimes, shit just doesn't go like you or anyone else thought it was going to.

So if the whether has left you frustrated these past couple of weeks, pouring down with little warning and turning sunny the minute you cancel all of your outdoor activities, know that I can empathize. This is my brain on any given day. And no matter how much you try to prepare, to do everything correctly, to take all the precautions, to carefully listen to all the storm warnings and predictions, sometimes you miss the mark, or the storm changes course swiftly and there's nothing you could do to change it.  And when that happens, you get to a safe space as quickly as you can and, as one apparently only does in big storms or serious flareups, hunker down until it lightens up.

Thursday, July 26, 2018

Look Ma, No Meds

It's been a while since I've written. I've been going through some stuff, both enjoyable and .... less so. I was traveling to Spain, which was amazing. I was in a car accident that possibly totaled my car (I'm ok), which is not amazing. But mostly, I've been titrating down on my medication. I've been doing so since January, with my therapist/heath care team overseeing it every step of the way.

I'm decreasing my meds for personal reasons that I'm not ready to share yet, but I will say that it has nothing to do with my mental health. By which I mean, I'm not decreasing them because my health has gotten so much better that I don't think I need them. On the contrary, I have a lifelong condition and I know that one of the only reasons I feel relatively better regularly is my medication. Nor am I doing so because of anything wrong with my meds, or because I've become one of those people that thinks medication is evil and makes me a "pawn of the system".  Far from it.  Medication has most likely saved my life, and despite the nausea, dizziness, disorientation, numbness in my tongue and lips, and my personal favorite, the never-awkward intense night sweats, the side effects of my meds are not all that bad - especially not compared to I feel when not taking them. But I have my reasons, and they're good ones (at least I think so), and hopefully one day I'll be able to share them. Just not yet.

Still, I wanted to share my experience of decreasing meds, as well as some tips and some real talk, in case you find yourself in a position where you need come down off meds, either for prolonged time, or in order to switch to something else.

First a few (possibly obvious but important none the less) tips:
  • Work with your therapist, psychiatrist, anyone and everyone involved. Do not attempt to decrease your meds on your own without professional help (caveat: I'm saying this for maintenance meds, not things you take as needed for specific symptoms one-off style).  
  • In working with these professionals, set up a timeline from the beginning (obviously if you have to switch off for emergent reasons, this isn't always possible, but do your best).  Plan out the trajectory of your decrease before you even start, so that you know you're giving yourself enough time. Build in leeway in case you need to slow the decrease, or pause at any point.  
  • Set your boundaries ahead of time. If you have experienced things in the past that are giant red flags of your health decreasing, note them. If there are things you just flat out aren't willing to go through in order to decrease meds, be honest with yourself and your therapist (and anyone else affected) from the beginning. They can serve as your markers for "this is going too fast, I need to slow down/I need a different approach/I'm not ready to do this right now".
  • Document how you feel. Everything, even if you're not sure if it's related. If every time you downgrade a dose you notice xyz, make note of it. It may be a coincidence, but you never know. Share these with your health professionals. Look for patterns. Remember, you know yourself best. If something doens't feel right (besides the obvious fact that you're decreasing meds and may generally feel worse), then voice it.
  • Try to keep everything else as routine as you can. This way, the only thing massively changing is your meds. Try to get up and go to bed at the same time. You may need to adjust your sleep patterns slightly  - i.e. going to bed earlier if it takes you longer to fall asleep, giving yourself more time to get going in the morning etc. But do the best you can to keep things routine.  Make a note of any adjustments you have to make, so you can find the balance that feels best (and I use that term relatively) for you.
  • Have a support team, and build an emergency plan. Have "life lines" in place - loved ones that you can contact if you have suicidal thoughts, or are feeling extra ill and need immediate support. If you can, involve your loved ones, especially spouses/partner, in your overall plan. If they know what to expect (at least theoretically), and understand what you might be experiencing as you decrease, they can both be there to support as needed, and look for signs of particular concern.
Now, some less-pretty but solidly real pieces of info:

  • There are going to be days where you feel like absolute shit. I mean, if you felt completely fine without meds, you probably wouldn't be on them, right? So naturally, as meds go down, the feeling like crap factor goes up.  This is totally "normal", for lack of a better word. So don't be discouraged. I'd venture to say virtually person going off meds for a reason other than "they no longer need these meds" is going to feel some ill effects. This is even true if you're going off meds because they aren't working well. You're changing up what's going into your system - it's going to affect it, especially at first.
  • There isn't much pattern to the better versus worse days. Right after each decrease, especially if it affects your sleep, you may notice a significant change. But then you'll have a day where you actually feel pretty OK (at least speaking from my experience). Or two, three, five. And then bam - another feeling like shit day. That's the nature of the beast, especially if you're mood cycling.... because... it's cyclical. And that is going to become more pronounced as the meds decrease.
  • You may well experience hours/days/weeks/months where you think, "how the hell did I even exist before I was on medication". I certainly did. I wondered how I made it through growing up, college, grad school, and general adult hood without the meds. Because we can still have really rough days on them (they're a treatment, not a cure), it can become easier to forget how even more terrible it felt without them. You're going to feel like there's no way you can do this. That if this is how you feel with a small decrease, how can you possibly continue to decrease, let alone go off of them all together. Again, totally normal. (Note: Listen to your intuition on this. If it really feels that you cannot, that it's dangerous to you to keep decreasing, talk to your health professionals. Especially if you experience suicidal thoughts). 
  •  There may be days that you fail to recognize yourself. On these days, you're going to need extra self-love and self care. These are a crucial part of the process. You may need more time to get things done, or more frequent times to rest and take time for yourself. Coming off meds is seriously difficult, and takes a tremendous amount of strength. But as with anything that takes strength, it can be exhausting. It's extra important to take care of ourselves during this time. This is where involving loved ones in the process, to have them help you out with things around the house, errands, tasks, etc can be huge. If you build this into your plan, you allow yourself extra time and energy for self-care.
  • If you're a mood cycler, or struggle with anxiety, you'll likely experience too much energy. "Too much energy?" you might say if you've been in a depressive cycle that makes it tough to get out of bed. And I get it, it seems impossible. But yes, too much energy. Our meds can, at times, make us feel sleepy or sluggish. As you decrease, you may notice you have more energy, don't hit that 2PM slump during the day, need less sleep at night. But this can quickly slip into mania or hypomania (if you cycle). Or all that extra "energy" may be the nervous energy of anxiety. You can go from feeling "wow I don't actually need a to crawl under my desk and nap" to not being able to concentrate, feeling anxious, jittery, on edge, and worse pretty, quickly. Keep just as much of an eye out for this as you do for increased depression. 
  • There may be days where you actually feel pretty damn good. Not (hypo)manic good, but just good. Like a person without mental/chronic illness would feel on a daily basis.  And it's super tempting to think, "wow maybe I don't need meds anymore!" And if continues, by all means, revisit the issue with your therapist/psychiatrist/health professional. But more than likely, you're just having a good day(s). That's all part of mood cycling and mental illness. Even off meds, I'm not cycling up or down every moment of every day. I'm not anxious every breathing moment. My advice is, don't overthink it. Simply enjoy feeling better for the day or days or hours or whatever it is. 
Today is my first day without any meds at all. I took my last (extremely lowered) dose yesterday around 2PM. So as of this writing, it's been 24 hours. I'm actually not doing terrible. I have more energy, focus can be tricky, but I'm hanging in. On the plus side, I don't now have to pack extra snacks for random times so that I can take meds (I mean, I still do, I love to eat, but I don't *have* to). I also don't wake up in the middle of the night looking like I went for a swim in my sleep. So that's sexier less gross. But most importantly, I'm still here. I have even laughed and smiled today. I've texted with friends. I'm looking forward to spending time with my hubs and my dog this evening. I'm hanging in. I know there will be tough days, as there always have been, but I'm making it through.

If you are contemplating decreasing your meds, or have to decrease your meds, or are going through this right now and need to vent, please, reach out. I may not have your exact experience with your exact medication, but I have gone through it, and come out the other side. I'm here for a vent, to be a shoulder to lean or cry on, or to give advice where I can. So please, if you need, reach out. I'm always here to listen.