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.


Parties/food/drink: 
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.


Costumes:
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.

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.

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.

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.

I Have An Illness

I am not "so dramatic", I have anxiety.

I am not always "looking at the glass half empty", I have depression.

I'm not running a mile a minute and talking nonstop because I think I'm so important, I have hypomania.

I'm don't just "cry about everything", my illness makes me feel lost.

I'm not "needy" and looking for validation, I'm asking for support during depression.

I'm not selfish or lazy, I'm hurting mentally, emotionally, physically.

I'm not weak, I'm sick.

I'm not "always complaining"; I'm sharing my deepest thoughts and struggles because I trust you.

I'm not "making mountains out of mole hills,"  my anxiety and hypomania won't let my brain rest until certain things are done. It feels like I'm being mentally eaten alive.

I don't need to be fixed or "taught the right way to think or act" or molded into pretending I'm the version of OK that society is comfortable with. I don't need to "just suck it up".  I don't need an attitude adjustment or to be more grateful. I don't need you to tell me that the way my brain works is wrong. I don't need to be made to feel bad or guilty or less for having a illness I never asked for and battle against every day of my life. It is not a choice. I have an illness.

Mental Health Trivia

Did you know it's National Trivia Day? Well, it is. And I love Trivia. So I thought I'd do a little mental health and suicide prevention trivia quiz. Because this information is really important to understand, so that we can help break the stigma and debunk the mental health myths. Without Googling (or searching in any other way), how well do you do on this quiz?

1. One in every _____ adults in the US has a mental health condition.

2. Depression is the _____ (ie 10th, 3rd, etc) cause of disability worldwide.

3. One half (50%) of all chronic mental illness begins by the age of ____.
3b. Three quarters (75%) begins by the age of ____.

4. Suicide is the ____ (4th, 12th, etc) leading cause of death of death in the U.S.

4b. It's the ___ leading cause of death for people aged 10-14, and ____ leading cause for those        between the ages of 15-24.

5. Approximately ___% of American Adults live with an anxiety disorder.

6. There are approximately ____ suicides per day in the US.
6b. Of this daily number approximately ____ (number) are veterans.

7. People with mental health conditions are ____(number) times more likely to be victims of violent crime than perpetrators.

8. Approximately ____ million American adults live with Bipolar Disorder.

9. 1 out of every ____ adults lives with Schizophrenia.

10. Can you identify these mental health condition acronyms?

• GAD
• SAD
• MDD
• PTSD
• BDP
• OCD
• ADD
• BP
• ADHD

When is Enough, Enough?

There often comes a point in life when you feel you must say "enough's enough". I don't entirely get the etymology of that phrase, but anyway, a phrase it is. The point being, at what point do the costs outweigh the benefits. In some cases, this is literal. In others, it's figurative. When you're living with a chronic illness, you may well deal with both.

Those of us that have illness(es) every day of our lives are used to living, what we call, low on spoons. There aren't a lot of days where we feel we're 100 percent ready and ready for anything life throws at us (caveat: some people have told me they feel this way in a manic episode. I only feel jittery and agitated in mine, so I don't experience this). And generally, we persevere. We are spouses, parents, employees, bosses. We volunteer or we participate in community activities. We try to live our daily lives as "normally", for lack of a better word, as we can. We may need more naps or to go to bed earlier or to take a break once in awhile, but we keep plugging along.

But at what point do you no longer do that? At what point do you say, "my health, my sanity (in my case) has to come first"? At what point do you finally decide that something's has to change. At what point do you say, "This is going to be a really difficult change, and it may even affect those I love, but so will losing my sanity, and I'm headed straight down that path"? And how do you do that? How do you tell those that are depending on you, often in numerous capacities, that you have to chose your sanity? How do you explain that it may seem like a drastic decision, like a short term solution, but that losing your mind, which you are actually close to doing, will be a much longer term problem? How do you get that courage, that conviction?

It's ideal, of course, if others are the ones to suggest the changes. If your loved ones say, "Listen I know you love volunteering at the xyz or participating in the abc, but it's having a terrible effect on your health. Maybe you should take a break." Or if they say, "I know you're trying to be everything to everyone, but let me take over xyz for a little bit." It may even be them supporting a career change, or you taking a chance and choosing to go after a dream. Of course, some are bigger decisions than others. Suggesting you leave the PTA is not the same as suggesting you reinvent your career in the middle of your life. But my point is, it's ideal if they come to you. Because it takes away a little of the guilt. And yes, there shouldn't be guilt for putting one's health and sanity first. But at least for me, there's always this nagging, "What if I just wasn't trying hard enough?" What's ironic is, I would never feel this way about someone else. I'd be 100 percent behind them making whatever changes they need to. I'd understand exactly how they feel, and I'd be the first one to tell them that if they don't have their health and sanity, that they can't be there to help others, so in the long term, it's best for everyone. But when it comes to myself, I'm always managing to convince myself that I can't let anyone down, or put anything at risk. I always manage to convince myself that I just have to get through it, because I'm failing otherwise. We are, I think, our own worst critics. And so someone else being on your team, looking at things from the perspective of your health and sanity instead of the perspective of "how things normally go" or "the most logical solution", is one of hte most amazing feelings one can experience. And for it to be their idea, for them to be behind it lessen the self-criticism, is amazing.

But sometimes, that isn't the case. Sometimes it feels that nobody truly understands what is going on inside your head. You look ok. You're holding it together. You had a good day/week, and that makes them think it's not that bad. And it's understandable, I suppose. They see you've gotten through everything else. They think it's a kneejerk reaction, or that you're so emotional that you're not thinking it through. They don't understand the battle raging in your head. The battle that you're losing more quickly each day. So what do you do? When, and how, do you say, "Enough is enough"?  Have you done this? I would love to hear your stories. 

8 Things That Having A Mental Health Condition Has Helped Me Stop Giving A Sh*t About

Having a mental health condition sucks. It absolutely, completely does. I've been the worst depression in a long time lately, topped with pretty severe anxiety. Thank goodness my boyfriend is the most patient and understanding and supportive man in the world. I don't know that I'd get through all of this without him, though he promises me I would. But having a mental health condition, and dealing with all of the turmoil, pain (physical, emotional, mental), struggle, stigma, and everything else it brings on, has helped me stop caring so much about a few things that I realize, when compared to... say... my ability to positively function in the world... aren't that important.

• That you think I'm "crazy". Now, let me clarify. This is NOT saying that this term is ok. It's not. It's ignorant, stigmatizing and downright wrong. But the fact that you personally think I personally am "crazy"? Unless you're using it as a grounds to discriminate against me somehow, I could give a rats ass. Because we're all our own kind of "crazy". Meaning we all have things that make us unique, quirky, different. Maybe I'm a little more different than the average person. So what? Do I really care what someone who is clearly ignorant and judgmental and stigmatizing thinks just because I'm not like everyone else? No. But if I hear you using the term to refer to someone, or mental health in general ... well let's just say I've been doing a lot of boxing training lately. 

• Being trendy or cool. I've never been trendy or cool. Ever. And honestly, I've kind of always marched to my own drummer and not cared. But having a chronic illness puts things in perspective even further. It makes me realize that I have no choice but to be my own person, because I can't possibly be like everyone else even if I wanted to. And, it's given me a group of spoonie friends who get this, and realize that staying alive and functioning in day to day life is way more important than if you have the latest hairstyle. Also, I spend a crapload of money on therapy appointments, medications, health insurance, etc. If I'm buying the latest brand names, I'm buying it 75% off on the TJ Maxx sales rack. 

• Getting drunk. I kind of outgrew this naturally because I'm a 36 year old adult, and therefore should have. It doesn't mean I don't enjoy a good beer or glass of wine or bourbon (or two). But I already lack enough control over my brain sometimes. Why the hell would I want to lack even more? Plus, alcohol is a known depressant and I suffer from depression naturally so that doesn't make for a good combination. Plus again, priorities. "Hey, I'm finally having a good day! Let me do something so I won't remember it!..". No. Let me relish actually feeling ok and enjoying a day with my loved ones.... that I'll remember in full detail and not be feeling massive effects of later. 

• Staying out/up late.  Similar to the above. Lack of sleep makes me cycle. When I'm finally not cycling, why do I want to stay up late and chance lacking sleep, and therefore cycling (I am unable to sleep in past 7:30 or 8 AM unless I'm severely ill or jet-lagged)? I'd rather actually continue to catch up on sleep that I've missed from waking up due to cycling or anxiety the rest of the week/month. 

• Material things. I never really cared about these, but now, I really, really don't. Yes, I have a Mac. Yes, I have an iphone 6. These products help me work, and more importantly, keep me in touch with friends and loved ones. But similar to being cool or trendy, I have priorities, and having the biggest tv on the block or the newest coach bag are not among them, even remotely. I'm not saying there's anything wrong with you wanting these, but quite frankly, I have bigger fish to fry. Like staying alive and feeling sane some days.

• Being the same size as I was at 21. I will be 37 in September. I take pride in being active and eating healthy and generally keeping in as good health and shape as I can (minus the obvious chronic illnesses, in which I have no choice).  But things change from 21 to 31 to 36, and I am probably never going to be as thin or my body as firm as my younger self unless I'm ill and unnaturally losing weight.  My childbearing curves will surely come in handy when it's time to bear a child, and when I'm taking the best care of myself, I have done pretty well for my age, I think. I have battled body image issues in the past, and I do not want to go back there. I have to eat a certain amount before I take my meds each time, which often means a larger breakfast or extra snack.  So if that means I'm a little curvier and more muscular than thin, well, at least I'm as healthy as possible. 

• Being popular/having a large group of "friends".  I have an amazing family, a boyfriend who is my best friend and partner in everything, and some very close friends who would do anything for me, and vice versa. I don't need a huge group of people. In fact, as an INFJ introvert, I don't want a huge group of people around me. I want a few close friends that I can count on, and I'm happy to have others who want to do things occassionally, but who I realize aren't my best friends. As I mentioned above, I've never been cool, and I see no reason to start being cool or overly popular now. 

• Having a big savings account. I never much had the opportunity to care about this before, because let's just say I haven't chosen careers that scream six figures. But the longer I live with chronic illness, the longer I am all about experiencing every positive moment, every "healthy" day (i.e. a-symptomatic/less symptomatic). I want to explore, learn, experience. I have spent the last 15 years exploring the world, and I've been even more gung-ho to do so since being diagnosed.  It's equally true of things closer to home - taking impromptu day trips, visiting a new attraction or museum in my home city, going to the local farmers market to pick out food for the week, family game night (with actual family or close friends). I value lazy Saturday mornings making breakfast and sipping coffee with my boyfriend, because those mornings are precious - we're rarely "lazy", and they give us a chance to spend time relaxing, just the two of us, with nothing on the agenda but enjoying each others' company. This doesn't mean I want to be poor (it's tough to be poor and travel like I want to), but I don't care about having a massive savings account just to have it. I need money to live a comfortable-enough life of experiencing and truly living. Not to just to watch the total increase, and not to buy expensive things that I clearly don't need. 

I'm not saying that caring about these things is wrong. But for me, it's just not that important. It doesn't mean I don't have moments of "I wish I had more money", or "why is nobody around, don't I have any friends?". But they are not my focuses in life.  Quite frankly, I don't have the time or energy. I have too many other things to focus on, like staying healthy, spending quality time with loved ones, and enjoying each good day as much as I can, because I know it won't last very long - that's just the nature of rapid cycling. So while I hate my illness, and I wouldn't wish it on anyone, I have learned and grown from it. And there's a lot that to be said for that.