Friday, December 8, 2017

Grappling With Questions

I haven't blogged in a month-ish. For me, that's a long time. Part of it is trying to keep several blogs going (this and Spread Hope Project), along with my business, my part time job, and my organizational work. There's also Thanksgiving and then the week and a half I spent in Spain, the latter of which I just finished. Plus I've spent the past few months continually exhausted, and when my brain is so drained, it's tough to find writing inspiration. Or, you know, think of intelligent- sounding sentences.

But it's not just that. I've been battling a lot of confusion within myself. I feel like I'm at a turning point in my life, except I don't know exactly what that point is. I know that I have to do something. There's a lot about my life that feels like it doesn't quite fit me right, but I can't quite figure out why. It's like wearing clothes that technically are your size, but there's something about them that just feels off.

When I dig deep down, there is one glaring question that I am struggling to answer:  What am I doing? Sure, the answer sounds obvious. I manage to fill my days well enough. I have work and my business and my blogs and my organizations, and of course, my loved ones and friends - the most important part of it all. But what am I doing that will make a lasting, positive impact - externally, and internally.

Taking out loved ones and friends, because hopefully I have a lasting, positive impact on their lives, I ask myself continually, "What is my point?" And this is not to downgrade loved ones. But as I'm not a mother, or a caretaker, or anything like that, these relationships aren't the primary part of my days, despite being the most important overall pieces of my life. When my family and friends and husband go off to work for the day, there's a whole lot of time in between that I want to fill with purpose. So what am I doing with it? What am I working towards? What do I ultimately want my life (outside of loved ones) to be about?

That's where I'm struggling. I feel like I'm grasping pieces here and there, but having a difficult time pulling them together. Inherent lack of self-esteem and confidence in myself doesn't help, because I continually question my ability to successfully do anything that I may come up with. It's like I can't manage to see myself as succeeding, as being successful, as getting where I want to go. It feels like I'm playing dress up (I'm really into clothes analogies today, it seems).

Thinking back, I didn't used to be like this. In gymnastics all through my youth, I always went for the biggest and toughest routines. I often fell on my head and my ass (and on beam, other parts that shall remain nameless but every gymnast understands). But I went for them. I literally got points for effort, and those points added up to me getting to one of the highest levels I could in the sport. After college, I went out and interviewed confidently for jobs. I never thought I wouldn't get them, and I had several offers right away. There wasn't doubt and fear and anxiety. When I started my travel business, I was sure, confident, excited. I didn't question "what if it doesn't work?".  I worked on it day and night, believing that it would. (The economy tried to thwart me, but that's a whole different story).

In fairness, part of that might have been lack of medication (i.e. hypomania), but part of that was simply believing in myself. Part of that was life not having beaten me down as much, and me not letting those times it did shape my image of myself. So how do I get that back? How do I take those big steps, those leaps of faith, while feeling confident, and not let that confidence be shot down when I hit a hurdle, or even numerous hurdles? How do I step back and look at the big picture without allowing these fears and anxieties take over, so that I can see the overall path ahead of me? Because right now, it feels like I'm trudging through mud, in a complete haze, unsure of even the slightest step, let alone which path to take.

I know this post is kind of rambling, but I feel that's how my brain is at the moment, so it fits. My thoughts and ideas are being pulled in 50 directions, none of them seeming to be exactly right, yet each of them seeming to be a piece of the puzzle.

I'll take your suggestions and ideas. I'd rather not take your rah rahs or cliches or inspirational quotes that really don't help me at the moment. But I'm open to your honest thoughts. And I'm open to your messaging/emailing/texting me if you'd rather not put them in comments.

Until then, thanks for listening to my rambles! 

Thursday, November 9, 2017

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. 

Tuesday, October 31, 2017

The Trouble With Being An Empathetic Person

I am an extremely empathetic person. I mean that in the true sense of the word. I physically, emotionally, mentally feel for others in a way that can be detrimental to my health. So I understand people. Intuitively. I don't have to make an effort, it just happens. Someone speaks badly to me? They must have had a bad day. Someone does something that hurts me? They weren't trying to, I know they're really a good person. Someone need me to do something for them? Wouldn't I want the help if I asked for it? Dog has an accident? Well, I mean, if I could only get to a bathroom the few times a day that someone commanded I could, I'd be in trouble!

This way of feeling, of thinking, has its advantages of course. I'm always there to listen, to support, to help. I can often understand those who feel like nobody understands them. The ability to help others gives me a purpose. If there was such thing as a professional helper, it would probably be my ideal career. I don't have a ton of "skills" to offer the world per se, but the ability to help people allows me to give of myself what I can.

The trouble with being an empathetic person is that eventually, one of two things happen.You may give so much that you draw out what should have been for yourself in order to keep giving, and you collapse into yourself and withdraw quietly from the world except for to help people. Or you break. The next person who tries to take advantage of your understanding nature is going to endure the most out of proportion anger that they have ever seen. They are going to say something hurtful or speak in a tone you don't like and all hell will break loose. Because you just cannot give one more ounce. Sometimes, these two happen in conjunction. You try to keep drawing from yourself, but eventually, you can't. The only option you have is to fight back, and fight back you will.

And because everyone is so used to you being understanding and caring and giving, they don't understand what's happening. Unless they, too, are a truly empathetic person at their core, they don't see that you have no other choice but to recede or break. They don't understand why you "can't handle it". They don't see that your tears and frustration and anger at this one situation are not about that situation at all, but built up from weeks, months, maybe even years. They don't see that you have finally had enough. Nor do they understand when you completely withdraw. It confuses them to see this warm, loving, giving person completely turn in on themselves. They can't comprehend why someone who usually is so open suddenly folds in, placing a wall around themselves. So I will tell you: It is self-preservation. It is trying to save ourselves so that one day again soon, we can continue helping you.

When this happens, please do not push us beyond our means. It's not that we don't want to help, truly. It's that we cannot. And we won't be able to until we replenish for a bit. We are not selfish or self-serving or thoughtless or heartless. We empathetic people are drawn dry. This is all we can do. We are finally giving ourselves what we've always given you. Because we, too, deserve it.


Tuesday, October 17, 2017

Depression Is...

Depression varies from person to person. It varies in severity and how the symptoms manifest. It varies in frequency and length. It varies from one bout to the next, even within the same person. So I can't tell you what depression is to everyone, all the time. But I can tell you what it is to me.

Depression is not seeing a reason to get out of bed.

Depression is crying all the time, even when you don't know "why".

Depression is feeling worthless and hopeless.

Depression is feeling like you are never enough.

Depression is feeling unable to enjoy even the most joy-filled ocassions.

Depression is feeling like you are going to be emotionally torn apart.

Depression is feeling constantly overwhelmed.

Depression is not being able to feel anything at all.

Depression is feeling hollow and empty.

Depression is feeling isolated and alone.

Depression is feeling like nobody understands you.

Depression is physically, mentally, and emotionally painful.

Depression is complete exhaustion all of the time.

Depression is putting on the mask and hiding behind a smile.

Depression is wanting to disappear.




Wednesday, October 11, 2017

Why I'm Making A Concerted Effort For More Off-Screen Time

I realize the irony, writing a blog about how I'm going to be on my computer less. But I promise this is during my scheduled "screen time" (explained below).

First, let me say that I do value the convenience of the screen and the internet and the connectivity it gives us. I have friends half a world away, and it allows us to communicate without phone bills that ranges in the hundreds (also it allows me to not have to talk on the phone). So I'm not one of those "these kids these days and their Facebook" people. Not by a long stretch. But I have been noticing something. The more time I spend on the screen, the more I see the following effects:

  • Headaches/Migraines
  • Inability to focus
  • Neck/shoulder pain (from being hunched over some sort of electronic device, I presume)
  • Feeling overwhelmed
  • Anxiety/anger/frustration numerous other emotions that are triggered by posts/emails/etc
  • Exhaustion
  • Missing what's going on around me
  • Lack of connectivity with people (ironically)
  • Weight gain (yeah, not kidding, I'll attempt to explain this one)
  • The inability to not be on the screen in some form


    Now, many of these are part and parcel to my illnesses in some form. I have suffered from migraines as long as I can remember. I have MECFS so am often exhausted. I suffer from anxiety and a mood cycling disorder, so feeling overwhelmed, unfocused, and anxious is basically a daily occurrence. But I do feel that these are being enhanced by screen time - and to clarify, by screen time I mean anything that involves a screen, which includes social media, emails as two of the big "offenders", so to speak. I'm going to address these one by one, to try to explain as well as possible. 
    • Headaches/Migraines: First off, it's pretty common knowledge that staring at a screen for hours can cause headaches. To be honest staring at anything nonstop for hours probably would cause a headache. If a migraine is coming on, the light and the fine-tune focus of staring at words on a screen don't help alleviate it. 
    • Inability to focus: my senses are super sensitive to stimulation, so with numerous email accounts and social media accounts, jumping back and forth trying to give the right amount of time to everything is too much. It's like standing in the middle of Times Square on a Saturday night with every sound and light surrounding you, and having to focus on one particular thing. Eventually my brain gets overloaded and I can't focus on anything. 
    • Neck/shoulder pain: sitting in a chair all day is tough enough. So hunching over a computer at work all day, then going home to sit on the couch or in the car or wherever and hunch over my phone exacerbates it. This also doesn't help the headaches, by the way. 
    • Feeling overwhelmed: as I mentioned in "in-ability to focus" sometimes it all gets too much. It builds up, and I feel like I have to not only be continually checking everything that could possibly come through my screen, but understanding and responding to it. After a while, it becomes a blur and builds up and I break down. 
    • Anxiety/Anger/Frustration/emotion: You can only read so many emails and posts about everything that needed to be done yesterday and every disaster and everyone's differing opinions and everyone arguing about those differing opinions and everyone being angry at some person or group before you implode. Or at least that's the case for me. For someone who feels these emotions in such a raw, truly empathetic way, even when they aren't directed at me, it's too much. I start to break down. 
    • Exhaustion: All of the above - the overwhelmed, the inability to focus the emotion is draining. So is sitting staring a screen instead of moving. The whole inertia thing. Now sometimes, when I'm really battling illness, I need to sit back and relax an watch mindless tv. But I still don't need to be checking email every five minutes. In fact, then I especially don't need to be checking email every five minutes. 
    • Missing what's going on around me. This is pretty obvious. Looking intently at screen = not looking intently at surroundings. My brain tends to focus so fully on something to block out all of the other stimuli, which will otherwise distract me, that there are times where people have come up and been talking to me for five minutes before I actually hear them. Not because I'm intentionally not listening. But because in order for me to focus I need to block out everything else. That means you too. 
    • Lack of connectivity with people. See above. Missing real life conversations to read emails. Also, thinking 'I'll just message this person on Facebook to see how they are" instead of saying, "hey want to grab a coffee and catch up?" when they live two blocks away. It's way easier to type "we need to get together soon" than actually make the effort to do so. Times when I'm flaring up, it's helpful to have different ways of communicating. But for people nearby, I hate when I feel online replacing actually seeing them, when we're both up to it. 
    • Weight gain: While I'm sitting on email (not at work)/social media/whatever other screen, I could be doing something, anything, that didn't involve me sitting not moving for an hour or more. The ease of "experiencing" everything from my screen means I move less. Thus, weight gain. Again, when I'm especially ill, sometimes I just need to appreciate the connectivity and deal with the weight gain. But when I'm not, there's no need to be just looking at a friend's pictures of a hike or a visit to the local market or whatever it is, when I could actually be doing it myself. 
    • Inability to not be on the screen. To me, this may be the worst. It's become my go-to instinct to check my phone when there's literally any spare moment. No need to soak in my surroundings, or talk to someone near me or do something creative or just enjoy being silent for a moment. My phone is always there and waiting for me, even if I've just looked at it five minutes before. 
    To be clear, I'm not bashing email or social media or any other screen-related activity. There are a lot of areas in which it makes life easier, especially with a chronic illness where face to face isn't always a possibility, or when anxiety makes it too difficult to be around people. Plus, in theory, you can think about an email or post, and reply when you've formulated a good, clear response, instead of being caught off-guard as you might be on the phone or in-person. But that's if you can wait to reply, and I'm finding it more expected, by others and myself, that we get instant replies. There are days when I miss the old rotary phone on the wall (besides the talking on the phone part), where if you weren't home, someone just had to reach you at another time. You didn't have to feel guilty not being available 24/7. It was assumed you didn't sit by the phone all day every day waiting in case someone happened to call. And I think that is the key. It's nice to have the option to be on the screen, to connect with people electronically. But it shouldn't be compulsory, all the time, nonstop. We shouldn't have to feel guilty about spending time with friends and family, or even by ourselves, instead of being online, especially the evenings, weekends, holidays. It's funny, how so many people in my age group talk wistfully about the days when kids played outside instead of on their phones and ipads, and yet we ourselves often feel the urge to be connected nonstop. Quite frankly, I probably could benefit from playing outside more myself! 

    So I'm working on changing this for myself. I'll be checking emails and social media in chunks of time (especially when I'm not actually at the office, checking office email). I will have specific times devoted to each area that requires my electronic attention. And people understand that in any truly urgent/emergent situation, they can text me, or call me if absolutely necessary. Aside from these instances, the world will not stop if I don't check email for a couple of hours, or longer on the weekends/evenings, an that's reassuring. I'd never want to be in such a position that it did.  

    Tuesday, September 26, 2017

    It's Not That I Don't Want to See You (On Being an Introvert)

    I'm an introvert. An INFJ, to be specific. One percent of the population, or something like that. We often get mistaken for extroverts, but we absolutely aren't. We're considered the "counselors" of the world because we're good at helping others - which I suppose appears to the outside world as liking to be around others frequently. But the two can be, and often are, mutually exclusive.  We're generally good with one on one interactions, as long as we have the chance to replenish our introvert stores. But the world tends to work on the motto of "If 1 is good, 2 is better, and 10 is great." This is the bane of the introvert's existence, unless you're referring to books. If you're not of the introvert personality type and ever feel put off or ignored or simply totally confused by those of us that are, here are some important points.
    • It's not that I don't want to spend time with you. It's that I don't want to spend time with the other three people you chose to invite who I barely know, when I needed a one on one get together. 
    • It's not that I don't want to talk to you. It's that I don't want to talk about the weather, or other pleasantries. I abhor small talk. It seems so....meaningless. Conversation, yes. Joking and banter, yes. Small talk, no. 
    • It's not that I don't want to see you. It's that I don't want to see anyone. I need to replenish my stores so that I can interact with people again. Social interaction is physically, mentally, and emotionally draining. I need to hibernate after a while. 
    • It's not that I don't like people. It's that I truly value my alone time, my solitary time, my inward time. I crave it. I like people in a one on one setting when we can talk about real topics.  I have some incredibly close friends. I just don't have a wide circle, and I'm 100 percent fine with that.
    • To you it's an awkward silence. To me it's time to reflect, or to comfortably hang out without having to talk. It's simply enjoying our mutual presence. Also, I may well be writing a short story in my head. That happens to. My apologies on that one - my brain works in odd ways at times. I don't think that's really an introvert thing. That's more of a Maya thing. 
    • It's not that I can't be around people. You may see me in crowds at a concert or festival and wonder why I can do that, but not hang out with you and your three friends. The answer is simple - one is a crowd, the other is a group. A crowd doesn't require interaction. A group does. In a crowd I can be off in my own little world. In a group I'm expected to participate. And trust me, crowds drain me too. But since I'm able to put a social bubble around myself there and just do me, I can last a little longer. 
    • It's not that I'd rather spend time with dogs than most people. Well, actually, it is. 

    Friday, August 25, 2017

    Antsy Pantsy

    I'm antsy today. Terribly antsy. I'm "working from home", and so far all I've gotten done is a couple of organizational emails, getting my tire plugged at the auto shop, and starting some laundry. I have an appointment with my florist later today, so there's that. It's not that I don't have things to do. I really want to be able to work on these new ideas I have. But I'm at a standstill. Ironic, being antsy in a standstill. I can't focus, can't sit here and concentrate. I feel the need to be outside, moving, not sitting inside at a computer - even if it is at home, with the blinds up and a nice amount of sun streaming in.

    I am on my fourth dose of caffeine - three cups of coffee and Diet Dr. Pepper (my current dose). Naturally, you're probably thinking "It's not even noon. If you're so antsy, stop with the frickin' caffeine." But honestly, it helps me. Part is my need for morning caffeine. I usually have at least two cups of coffee. Then I waited in a nearby coffee shop while I got my car worked on, hence cup 3. Now, I got a Diet Dr. Pepper because for some reason, it often helps me work - a hold over from college and grad school, in which I always had one by my side while working on papers and the like. It's like a prop that must be on a set for the scene to occur. In fact, it got me writing this, which is progress - writing feels like the only thing I'm capable of doing today that's even remotely close to work.

    I think it's in part due to sitting at a desk much of the week. I'm a restless spirit by nature, and I tend to be mobile when I can be, despite my chronic fatigue. Moving feeds my creativity, my emotions, my heart, my soul, and my brain. There's also the fact that my condition causes about 200 thoughts going through my brain at the same time, which means that I have trouble actually focusing on one or a few.  This can make one antsy.  Not to mention I'm in the mood in which I feel I need to take action. I've spent a good number hours/days/weeks/even months pooling together ideas - some of which are more pooled together than others - and trying to organize them in some fashion. After a while, my brain gets done, more or less, with that... organization can only go so far without action, and after a point it feels a bit, well, pointless. Like you're going around in circles with all of these ideas that so far have not come close to coming to fruition because really, you haven't even started. Not to say that brainstorming and planning isn't an important step, because it absolutely is. But unless where you're stuck is what you want to do in the first place, it only gets you so far.  So now I have all of this restless energy, needing to take action at... something. Anything. Not even towards these goals per se, though obviously that would be nice. Just not to feel like I'm sitting here physically doing nothing.

    But now, I'm stuck. I have the ideas, but nothing seems to be working in moving them forward. Not trying to do the research and get the information for starting by myself. Not reaching out to ask others for suggestions. Nothing. It feels like an eternal waiting game. And it's downright uninspiring and to be honest, tends to start dropping me towards depression. When you have all these great ideas and you get started and you try to get the info and you reach out and you get nothing, crickets, it feels like you'll never succeed.

    So that's where I am today. Antsy, frustrated yet energized, needing do anything but sit behind a computer, ironically. And yet knowing that if I just do something to get rid of the energy, I'll feel like I wasted a good day off of work not putting my ideas into actions. It's a mental tug of war, really. And there's not too much of a point to this post, to be honest, except to get it out of my system, try to explain how I am feeling, and let others know that if they feel this way ever, they're in good company... or at least company. Maybe that's at least a start. 

    Wednesday, July 26, 2017

    Dear Friends, I'm Sorry For Disappearing

    Dear Friends,
    I'm sorry for disappearing on you. I know I haven't seen you in ages. Too long. And I miss you. A lot. Please don't think otherwise. I know I've probably missed your girl's night out, or your child's birthday party. I know you've invited me, and it probably looks like I'm blowing it off.  I'm not, I promise. It pains me to miss them. It hurts my heart. Not because I love going to these specific activities per se, but because I feel like a terrible friend. And because I miss you, and I was really hoping that this time, I could manage it. You are a valuable part of my life - I don't keep a large number of people close, so you must be.

    But I have an illness. Several, actually. And lately they've been rearing their ugly heads, so to speak. If you're close to me, which you are, you know I battle a mood cycling disorder, complete with hypomania, depression, anxiety, and social anxiety. There are times that getting out of bed is physically, mentally, and emotionally painful. There are times, many, most in fact, that being in a group of people - not a crowd, where I can disappear, but a group where I'm supposed to interact - is terrifying. I'm not exaggerating. It's not that I don't prefer it, but that it's terrifying. I've been crying constantly, and I've learned the hard way that the anxiety that will occur if I force myself to go will have a disastrous impact on my mental health. And the few times I've almost managed to convince myself that it will be OK, depression convinces me that nobody really wants me there, that I'll be an outsider, that I'll embarrass myself by breaking down and crying or tells me some other lie, I realize too late, that makes me crawl back in my little corner and hide.

    Lately, it hasn't been only group interactions, either. It's felt like all I want to do is hide and cry, or turn into myself and think quietly, read or write. And because I don't want us to get together, even one on one, and me to turn into a blubbering mess, I avoid seeing you. And besides I know that most of the time people try to make me feel better, it only makes me feel worse, for not being able to. Most recently, I've been experiencing terrible depression about being depressed. I barely recognize myself many times. Me, who used to be full of optimism and positivity, with an easy smile. And I feel like I'm mourning the self that I feel that I've lost. So I promise, it truly isn't you, it's me.

    So I'm sorry that I've disappeared. And I know it's a big ask, but please, don't stop trying. Keep inviting me. But also, maybe we can start by taking things at my speed? Would you be able to come to me, for coffee perhaps? If I'm nearby, one on one, and I start to falter, it's easier for me to get home, into my safe zone. Or maybe we can FaceTime to catch up. I know it's not the same, but it's something right? More personalized a bit, and I get to actually see you. It's a start.

    I also ask you, please, do not assume anything, especially from my social media. Yes, you may see me check in somewhere, or a picture of me out somewhere. I have a cycling disorder. Which means that by nature, I have ups and downs. Perhaps I was having a good hour, or day, or even weekend. I could have even been having a good week. It doesn't mean I'm "better". It means I was have a good hour or day or weekend or week. And if the next hour or day or weekend or week, I am not well and cannot see you, I'm not being dishonest. That hour or day or weekend could have been all I had in me. I could have given it a try, and become so mentally and emotionally exhausted that all I can do is lie in bed. Maybe I could only go because I was with my ever-understanding fiance, and I knew that if I had to suddenly clutch his arm and say "we need to go" because it got too much, if I was about to break down, I could. I was only able to go with that safety net. So please, don't assume.

    I miss you all. And I'm hoping that with the right combination of therapy, meds, life adjustments, and time, I may get back to at least having the ability to be my happy, less anxious, less fearful self. I'll never be cured - my illness doesn't work that way. But I'll take at least a little movement in the happier direction. 

    Wednesday, July 19, 2017

    When Did Being Busy Become an Excuse?

    There are some unspoken norms in our society. When someone (that you aren't super close with), asks how you are, you say something like "Fine, OK, good." You don't usually tell your coworker or the barista at the coffee shop, "Well this bought of depression is really rough and man, my IBD these last few weeks, whew!" Because we probably figure that "How are you" from this person is more or less obligatory, and that they don't actually want to know the details on how you're doing.  This frustrates me, INFJ and small-talk-avoider that I am, but I have come to learn that it's how society operates.

    But there is this societal trend, expectation really, that I just cringe at, and cannot seem to get behind: Busy. Everyone's busy. I don't think people even know what they're busy with some days. But that's what they are. "How are you?" "Fine. Busy." I've even found myself doing it at times, and it makes me angry with myself. But I'm an awkward small talker so I usually just put on the mask and throw out things people expect to hear - I'm fine and I'm busy.

    But the problem with everyone being so busy is that we don't seem to examine it closely.  We don't sit down and think "What am I so busy with, and is that really what matters most to me?".  As long as we're busy, we are covered. Can't make that important event? It's OK, you were busy. Forget a friend's birthday? Well, you've been so busy. Have to change plans on someone when they were really counting on them? They'll understand, you're busy.  Not get to do something you promised someone. They'll understand for the 1st or 100th time, because you were busy. And rarely will someone question it. Rarely, it seems, do we ask captain busy-pants exactly why these things that they're busy with are more important than that family event, the birthday, plans that we were counting on, their word or promise that they gave you.

    But when you battle illness every day, you sometimes have to ask yourself that. Is xyz more important than my health? Can I physically or mentally or emotionally manage to get through this relatively unscathed, or is it going to really put me out of commission? If I do x, will have the energy/strength/health to do y, which means more to me? I often have to prioritize the things that are the most important to me, and I have to live by that. What things matter most to me?

    • Family and loved ones (this includes four-pawed loved ones)
    • My health and sanity, because if I don't have these I can't be there for family and loved ones. 
    • Friends
    • Helping others, through my advocacy efforts and just in general
    • Work to a lesser extent, in the "I need my job because I am not independently wealthy" kind of way. 
    Notice a few things here: there's not a 'thing' on this list. Nor is money on this list. Work is on this list, but it's the bottom of the list - not because I don't value my job but because my work won't be holding my hand on my deathbed, and because if I don't have my health and sanity, I cannot work. Yes, there are things we need money for:  food, a roof over our heads, paying our bills, clothing. And wanting some money for livelihood, I understand. But why are we so busy working to make money for things we can't enjoy because we're so busy working?  Wouldn't your family rather see you and have a less expensive TV or car ,than have a top of the line TV or car and never see you? If not, well, time to examine why that's the case. 

    Being busy is understandable. But it isn't  some omnipotent reason that doesn't need to be further specified. If you're using it this way, it's become an excuse. You have to be busy with something, and the way you spend your time, what you're so busy with, shows your priorities, plain and simple. This is where that old adage "actions speak louder than words" comes into play. Time is the one thing we use that we can never get back - our most precious resource. So next time you're tempted to say "I was too busy" and end the sentence there, don't. Finish it out the way you actually mean it: I'mwas too busy with x, that I didn't have time for y like I promised you, because x is more important to me right now. If you don't like a sound of that, time to reexamine how you're using your time. 




    Tuesday, July 11, 2017

    Learning From My Past, As I Head Into My Future

    Yesterday, July 10th, was my former wedding anniversary. Thirteen years ago I walked down the aisle in a ballgown dress with six bridesmaids, seven groomsman, and approximately 200 guests. The wedding was fabulous. Basically my entire family on both sides flew in from out of town, some for whom I know it was a stretch time wise and financially. It meant the world to me, truly. The room was filled with people we'd each known over the past 24 years, many that we hadn't seen in years. It was a grand scale event that I became so wrapped up in planning that, in hindsight, I realized I was more focused on the wedding itself than the next 50 or so years of married life ahead.  But at 24 years old and one of the first of my friends to get married, that's what I did.

    I think I knew, or at least had a nagging feeling, walking down the aisle that I was making a mistake. But I'm a dreamer, with my head often in the stars, and I thought I was being unrealistic wanting more than I had - a good-hearted, steady, reliable man who loved me and wanted to spend his life with me. I thought it should be enough. As it turns out, it was not. We were not, as a couple. Had it, no doubt my life would be drastically different than it is today. There are moments when I think about how my life changed course on January 24, 2007, the day we decided to split. But I have no regrets. It was the best decision for us both. I believed it then, and I haven't doubted it a day since.

    In part, I think I simply wasn't ready for any of it. Some people know exactly who they are and what they want at 24 years old. I was not one of those people. I didn't realize that at the time, of course - I took the route I always expected I would. College, full time job, grad school, marriage, house, plan for a family. It wasn't until the "plan for a family" part began that I realized how unready for this life I was. It's funny how one day you can wake up and discover "this is really going to be the rest of my life if I do nothing about it right now." You'd think vows such as "for as long as we both shall live" said in front of 200 people including a priest would do that. But for whatever reasons, it didn't. It was the startling realization that I could be someone's mother, that if we had a child he would always be their father, and that we'd be inextricably tied forever in that way, no matter what else happened in our lives, individually and as a couple.  It occurred to me then how little we'd talked about the details, the actual realities instead of the "one day"s. It felt almost like a reverse Truman Show  - like a story that I played a part in, and suddenly it became clear that it was my life. We had moved along the path in front of us. We had never questioned if it was the path we should be following.

    Today, I'm just under two months from my wedding (it's two months from this past Sunday, but who's counting). I am almost 38 years old and have lived a lot of life since my last wedding. I know it's given me experience. I believe, or at least hope, it's given me wisdom. Now, my fiance and I talk about the little details, plan for the actualities of the future. Things as minor as interrupting our (very food motivated) dog while she's eating, playfully tugging at her ears and tail to make sure she doesn't mind, in case a future child did the same. We discuss the larger aspects of life and the minutia, having a plan, yet being able to go with the flow (OK the go with the flow is just him, I practically plan out my underwear a week in advance). We thing of the what ifs, even the unlikely ones. We have the difficult discussions now, so that we don't have to confront startling differences we never realized were there when a situation arises. We may not always agree, but we have learned where each other stands, and how to compromise where we must. We dream together, but also confront the facts. I certainly am no expert in relationships. Less so in marriage. But I'd like to think I've learned a bit along the long and especially topsy turvy road to where I am now.

    If I could give advice to anyone getting married, or thinking about it, it would be this:

    1. Don't ever, ever, ever assume. I don't care if you have to ask 10 different times in 10 different ways to make sure you understand each other - not that you always agree, but that you know where each other stands.

    2. Every answer to the above doesn't have to be a yes or no. If you don't know, say it. There are some questions I can answer with much more certainty at 37 than I could have at 27.  It's better for someone to know you haven't made up your mind than to be surprised when you change it - especially about something major.

    3. Compromise is incredibly important and it's not always 50/50 in every individual situation. In the end, it should about even out, but don't keep exact score.

    4. Sometimes, a topic may be so crucial that you don't feel you can compromise. Pick your battles, but stand your ground when it matters most. Otherwise, there's a high chance of bitterness and resentment down the road.

    5. Don't count on anything outside of the two of you to make your marriage happy. If your marriage will only be happy if your life together goes exactly as planned - ideal home, family exactly as you imagined, jobs on the current course, etc - you need to reconsider. Your partner should be enough for the marriage in and of themselves - not as part of a larger plan that comes along with them. Because we know what happens to the best laid plans.

    6. Don't count on either of you changing, but understand that everyone does in some ways. Meaning this: love and marry the person for who they are in this moment, not for who you think they could be or who they used to be. At the same time, everyone evolves and grows, or so you hope. Shifts in each of you, with age and experience, are almost inevitable. Allow each other some leeway, especially as the years progress. I personally wouldn't want my spouse at 64 to be acting like they did at 24.

    7. Sh*t is going to happen. This basically an absolute given. To you as a person, to you as a couple. The things you never expected to bother you will. Things you expected to worry about for years to come, you'll get used to.  When these things happen, know that you're in good company, and try not to let it discourage you.

    As I start dotting the i's and crossing the t's of the details for my next wedding, I can feel a glaring difference between my first wedding and this one. We have a total of two people in our bridal party, one on each side. We're having a 15-ish minute ceremony at the same site as our reception. There will be about 65 guests instead of 200, a good number of whom are between the ages of 1 and 14. We're not doing a shower (bridal, I am showering) or a registry. I personally don't care if everyone - that's not in the actual wedding - shows up in their PJs. What I do care about is that half of the time our discussions about wedding plans dissolve into laughter. that we enjoy cooking dinner together as we discuss our plans, that what we can't wait for most is the opportunity to spend our lives together, whatever that may bring.

    Tuesday, June 27, 2017

    To Those People In My Future

    There is this fact, this highly important fact, that I want those people who plan to be part of my future, in any capacity, to know. It is something that my soon-to-be husband knew before we went on our first date. It's something that my closest friends have known since the day I told them I had been diagnosed. It's something that I think is critical for anyone close to those with chronic illness to not only know, but to truly understand.

    My illness is for life. 

    I was born with it, and when I take my last breaths, I will still have it. It may seem better or worse, ebb and flow (it is a cycling disorder, after all), but it will always be there. Even in the moments when everything feels fine, feels "status quo". Even if I go days or weeks without an anxiety attack or dropping into depression, or an upward cycle into (hypo)mania, it will be there, lurking under the surface, ever present. It will affect me even when you do not see it affecting me, even when there are no outward signs, because I'll know that any day I could wake up and everything could have shifted on it's head. I'm never not aware of this. Every single day of my life is a surprise, even if nothing changes in my mood or anxiety level from one day to the next. The fact that nothing has changed is often a surprise. I may have a warning of a cycle. I often do not.

    I can "beat" individual episodes of depression, anxiety, mania, in the sense that eventually, they'll be acutely over. I cannot beat them for life. There is always the chance that something will bring on my anxiety, even on a beautiful, warm, sunny day on vacation where it seems nothing can go wrong. Something will, at least to my anxious mind, and it will throw me into a tailspin. I'll try to reign it in, and sometimes I can. Other times, I struggle. I may be able to downplay it, or move on from it quickly, depending on the severity. But I may not. There's always that chance. And once it escalates, if it escalates, it will be awful. For you, and also for me.

    I cannot calm down or relax on demand. No amount of meditation or yoga or healthy eating or sleep or exercise habits will "cure" me. They often help, but that is it. I can cycle numerous times a day, for no "reason" other than because I have a mood cycling disorder. I can wake up on edge, or even angry, at nothing in particular. If we're especially close, I'll tell you I'm struggling, and you'll know what that means. If we are not, I'll probably put on the mask as best I can. I'll take it off only when I'm in the comfort of my home, or possibly with trusted loved ones.

    There will be times when I have to avoid or cancel plans. My illness will make it excruciating to go out in public, or even to see anyone.  My options are to not go, or to spend the entire time trying to hold back tears and steady my body so that nobody can see me shaking, hoping nobody notices the emotional void I've forced myself into, which I must in order to pretend I'm OK.

    You may have to spend hours, days, weeks, even months trying to remind me that I'm not hopeless and worthless, that my life is worthwhile, that you love me or care about me. You won't understand why, once you've said it a couple of times, I cannot believe it. So I'll tell you why - it's the equivalent of you trying to convince me the sky is green when it clearly looks blue to me. I physically am unable to see it as green, no matter how many times you tell me, no matter how many convincing arguments you make - because to me, it's blue. And even if I finally say, "Ok, it's blue," I'm only saying this because you told me it is enough that I'm just agreeing - not because it spontaneously now looks that way to me. This is the same. I'm often unable to see the value of myself. It helps when you tell me, greatly, but it doesn't make it so. It may never make it so. I ask you not to stop trying. One day, your kind words, said for the 100th or 1000th time, may save my life. Please know that, even when your efforts may seem to have no effect, they do. Just knowing you're making an effort does.

    There are times I will take it out on you. I hate myself for this, and yet if I don't get it out somehow, I'll explode or worse, implode. I'll apologize profusely. I truly mean the apology. I hate taking it out on you as I'm doing it, yet it feels like if I stop this flow of emotion, I'll burst. Eventually, I'll exhaust as I would if I were sprinting at top speed. I'll then fold into myself, distancing myself from you because of this. I'll put a shell around myself, a cocoon. It's for you, not me. It's so that stop taking it out on you.

    I'll need to be by myself. It's nothing against you. I need to recharge. I need to be alone with myself, to try to understand what's going on. I need to eliminate all outside influences for a short while, maybe even just an hour or so, and that means you too. I'll be back, but I need this. It's because I care about you that I'm doing this. It's because I want to be my best self for you, and I cannot if I don't have time to replenish my emotional stores.

    There are times I'll scare you, and probably scare myself.  Not intentionally, but because you cannot understand how I'm feeling. There are times you won't recognize me. There are times I won't recognize me. I ask you to hang on. I understand how difficult my illness, and I as a result, can be. I am working hard, every day, to become healthier, even when you may not see the efforts.

    If you plan to be a part of my future in any way, please know these things. We are a packaged deal, my illnesses and I. There is no me without them. It will be worse at times than it even sounds here. There are no words to truly describe what it's like in the first person.  I'm doing the best I can to give you a heads up. Please know, there is an upside. My emotional depths mean that you could trust me with your life. My loyalty is steadfast. I often do for others at the expense of myself. I am a giver that will give beyond what most think possible. Those in my life, those who choose to be, are everything to me. I can, at least, promise you that.

    Tuesday, June 20, 2017

    The Pieces of My Illness That You Don't See

    My illnesses are invisible, for the most part. So this title might sound strange. But there's "invisible', and then there's "kept under lock and key" invisible.  Technically, if I was good enough at pretending (which I have been often), I could completely keep my illnesses hidden, other than the IBD, because you can only make up so many excuses to literally run to the bathroom. You may see me look tired or distant, as if I'm having trouble focusing. You may notice I'm quick to worry or stress out. You may hear me mention how exhausted I am. If you're close to me, or read my blog or social media, you'll hear me mention that I'm struggling.  You'll hear me say how I'm feeling anxious or depressed, or how I'm cycling rapidly. You'll be aware of my illnesses. That doesn't mean you'll truly see the extent of them.

    But there are so many pieces of my illness that you may never see even a hint of. Pieces that almost nobody will ever see except my fiance. I want to write about them though, because I think they're worth sharing. Not because they're extraordinary, but because to the public eye, I manage to hold myself together relatively well most of the time. It could make depression, anxiety, mood cycling, MECFS look like they aren't that big of a deal, to those who don't experience or understand them. What I want those people to know is that it takes Herculean effort some days to put on the mask. Herculean effort and three plus cups of coffee, to be more specific - at least for me.

    What you don't see is how difficult it is for me to get out of bed in the morning, despite the fact that I am actually a morning person. On my good days, I like to be up early and feel my best in the mornings. Still, so many days I have to absolutely force myself to get out of bed. I have to remind myself that in addition to the fact that I actually like my job, it pays my bills. On weekends, I have to remind myself that my dog needs walking and feeding. That the house needs cleaning and we're almost out of food in the fridge. Ironically, most days I get out of bed extra early due to anxiety - the options, when I wake up at 4 am, are to lay in bed and have my mind race ad cause massive anxiety, or get up and feel exhausted. I don't want more anxiety than I already have, and I'm used to exhaustion. I pick what seems to be the "better" option. I am always tired. Always. There isn't a day that goes by that I'm not exhausted. Many days, I battle weakness. Numbness in hands and feet, even when I'm walking, is something I've become used to. There are days where it feels like the blood has drained from my arms.

    You don't see how badly I want to curl in the corner. Or how I wish my bedroom sheets were an invisibility cloak. You don't see, because anxiety and hypomania often make me more talkative than I'd like to be, how significantly more content I am when I say nothing.  When I listen, especially to the universe, I'm content. The rain, the birds, a train whistle in the distance, the wind through the trees. There, my mind stills ever so slightly. One would think the opposite - less noise, more mental chatter. But it isn't the case. Less stimuli that seem to require it's acute attention makes it easier for my brain to rest.

    You don't see the wave of anxiety that wells up, that I'm almost certain is about to come out of every pore, as you say, "It's better if we talk on the phone, what time can I give you a call?" and I become frantic for an excuse. You don't see the panic that I feel when you say you've invited three other people to our lunch, which I thought was us chatting one on one as friends, because you assumed "the more the merrier!" You don't see how my mind races when you change plans at the last minute. When we're running late, and my brain has to now recalculate the entire day based on our new time frame. You don't even understand why I need to rearrange it in my head, but to me, it's critical. It's not even a conscious thought. It's as habitual as, say, making sure you have your daily cup(s) of coffee in the morning.

    You don't see how deeply I feel everything. I have become well-practiced at the mask. You may know I'm slightly bothered, but you don't see how I twist it around in my head for hours, days, weeks. I'm unable, it seems, to not do that. You don't see how deep the wound is, for even the smallest upset. How it makes me feel like I'm worthless. You don't see how I worry about virtually every conversation, wondering if the negatives are worse than I think, and the positives are just nice things said to make me feel better, that I don't deserve.

    Most of all, you don't see the self-loathing. You don't see how much and how often I hate myself for the way I've acted, for my inability to handle situations that most people can. You don't see how desperate I am to be able to go with the flow, to be social, to calm my words and speak less when it feels like my mouth literally will not stop, sometimes with my brain almost unaware of what I'm saying. You don't see how much I chastise myself for getting worked up, visibly, sometimes publicly upset, over something - and often at someone - that I later can't understand why it even bothered me.  And no matter how much I remind myself that this is my illness, that it's all part of what I battle, I can never fully allow myself not to personally blame myself. I blame myself where I would never blame others with my illness who acted the same - I know it's not their fault, because I know what the illness can do. And yet when it comes to myself, I cannot give myself that compassion.

    There are invisible pieces that have a positive effect. Every color is richer. I can appreciate a flower or a plant or a sunset more than most. I virtually feel the colors. My day, or at least my hour, can be made by the simplest thing - seeing (and petting!) a cute dog, helping someone with even the tiniest thing, a genuine compliment given to me. The rain is more entrancing to me. I feel a warm breeze as if it's about to lift me up and help me fly. A rich mug of coffee is simply wonderful - and getting it in a unique or pretty mug is an added bonus. Life has so many tiny, beautiful moments to me. Unfortunately, they often don't last. Each of the situations described above - the anxiety, the depression, the hypomania, the deep wounds, the lack of sleep -  all take over. But at least, between those, I can appreciate the littlest of things. I have to be grateful, at least, that I do have that. It makes the world, in these moments, perhaps not completely dark.

    Tuesday, June 13, 2017

    I'm Done Being Your Doormat

    Dear world, and a good majority of the people in it: I am done being your doormat. I have had enough. I have been kind and giving and caring. I have been sympathetic and empathetic. I have over-apologized for things that were never my fault to begin with. Sometimes, simply for who I am. For my existence. I have forgiven and forgiven and forgiven. I have accepted being trampled on, smiling and saying "it's OK I understand", and then silently going home and crying for hours, days on end. Sometimes I still cry about things years later, the hurt is so deep. I've let the things you've done make me feel bad about myself. Like I'm the problem. Like I'm best at just being your cushy little doormat. The cushy little doormat right before you step into your beautiful, expensive house - you have to trample me down in order to elevate yourself. For a long time, I thought it was simply my place. You convinced me of that. When I attempted to stand up for myself, you called me selfish or attention seeking, telling me to stop raising a fuss. You called me hot-headed, over-reactive, unreasonable. You convinced me I was the problem, simply for asking you top stop trampling on me. It made me feel worse about myself. Nobody wants to be a hot-headed, selfish, attention seeker. So I became even more of a doormat - to apologize for "unacceptable behavior", for causing you trouble. For years, almost 38 of them now, I have asked permission. I've asked permission for the stupidest things - for things nobody should ever have to ask permission for. I've practically asked permission to exist at times. And no matter what someone's answer was, I acquiesced. I didn't want to cause a stir. I am so empathetic and caring and understanding that I always managed to put myself in someone else's shoes and convince myself they were right. I felt guilty if I didn't. I hated myself if I caused a problem, caused anyone hardship, anyone was upset with me.

    But I am done acquiescing. Last night, I got some news that put me over the tipping point. It wasn't tragic or even terrible news - nobody was hurt or ill. It was news about my something at my home, that I literally just moved back into this past weekend after months of renovations, that will cost me a lot of money that I don't have, and inconvenience, all for someone else's benefit. And that was it. I was done. Everything that everyone has done over the years for themselves at the expense of me, every offense, every time someone stepped on me, every time someone upset me so as to not rock the boat, every time someone didn't stand up for me, or disrespected me, or treated me like crap, or convinced me to treat myself like crap, added up and triggered a switch. And yes, I am sure many people have gotten worse news lately. But if you tell me that I will throw something at you and we will cease being friends immediately, so I highly suggest you don't. We all have our own battles, and  mine is a long standing one with life and illness, and I ask you not to judge mine as I do not judge yours. I'm done with people judging me and trying to placate me and getting me to acquiesce. Done.

    I will no longer apologize for things that are not my fault. I will no longer let you trample on me to boost yourself. I will no longer let you convince me that it's my place in life. You will no longer make me feel bad about who I am, about standing up for myself and the things I deserve. I will not yell and scream and make a huge scene. I will not even try to convince you of my place. I will simply tell you my place. I will tell you what I will do, and what I will not. I will not ask permission for things that I have no business asking permission for, simply because the world has convinced me that everyone else knows best. I'm done believing that bullshit. I've seen through those lies. I won't bulldoze over everyone, I will be respectful when I know that someone does know better, when it is appropriate to ask permission or to collaborate efforts. But I've discovered that those times are much fewer than I'd been led to believe.

    Perhaps this will not make me popular. But you know what? I've never been popular. And years of doing what everyone else told me to do, of being convinced that I'm not worth anything, that everyone knows better, made me feel so inferior that I closeted myself away, not even wanting to be around people. Severe social anxiety makes it worse. So not a whole lot will change. And those who do stand by my side, like my loved ones and closest friends, they will be valuable, quality people. They will be positive two-way relationships, not simply people using me to get their way. I will know people based on actions, not pretty words. There is no "let me know if you need anything." That puts the onus on me, still, contacting you.  There will be no "Oh we should get together" with them not following up. Those are pretty, empty words that get others off the hook for not making an effort. People will not be too busy for me. Especially not with things like work and chores and tasks. I'm sick of inanimate pieces of life taking precedence over people. Nobody lies on their deathbed wishing they'd spent more time in the office or spent more time cleaning the house or running errands. It is people holding your hand as you take your last breaths. I want only people in my life that get that. I don't care if your reach out is "Well I have the kids at home but you're welcome to come over and sit on the floor and play toddler games with us". I'm fine with that. In fact, I prefer kids and dogs to most adults. Or if you are battling illness and suggest a virtual coffee get together via FaceTime. That works for - I'm probably battling too. And even if I can't do these things, you've offered. And you've offered on terms I can do - not some big group gathering that you know makes me anxious. You've tried. I don't feel like I'm making all of the effort. That means the world. I'm done being the only doer in 90% of my relationships. I'm done giving and caring and doing for others what they won't for me. Pulling all the weight. Being taken for granted. Doing things that cause me massive anxiety and depression so that I can see people because it's the only way they'll get together. Done, done, done.

    You see the problem, world and people in it, is that I never was a doormat. I am the pavement underneath. I could see the appeal of having the doormat there - it's pretty and nice and  people enjoy it. It softens the blow of people stomping on you. I like being useful, helpful, and giving. But suddenly, the doormat is gone. It's been trampled on too much. Worn through and tossed away. And now, there's pavement. Strong, sturdy pavement. People couldn't have stepped on that doormat for years if it had been hanging there in thin air. It was supported by the concrete all along. Concrete doesn't wear and tear as quickly as a cushy doormat. Nobody wants to stop down hard on the concrete. It doesn't silently clean the dirt off of your shoes as you step up into the beautiful home of your life, where dirt and doormats aren't welcome. You stomp on the concrete, you feel it. And sometimes, when it starts to storm, concrete gets icy. And icy concrete is not a place you want to step. It is particularly unforgiving. 

    Wednesday, June 7, 2017

    The Darkness of Emotional Overload

    Traditionally, I write about how situations feel while I'm in the midst of them, as that feels the most raw. Today, however, I'm writing from a more observant perspective - as if I'm standing on the edge of a dense forest, looking into the thicket. I know that a forceful wind or a small misstep could thrust me into the darkness of the trees, where I'd then struggle to make my way out. This is the point at which emotional overload, as I call it, begins.

    Contrary to what one might think, emotional overload doesn't require some massive occurrence. It doesn't actually require any occurrence, per se. It can be set off by a thought, or something you see - even if it doesn't involve you - or even something as seemingly innocuous as a song. The emotions involved don't all have to be negative. In fact, they don't even have to all be the same type of emotion. Happiness mixed with sadness mixed with confusion mixed with anxiety mixed with fear, for example, happens - sometimes frequently. Emotional Overload simply means that - you are experiencing so many emotions that you simply cannot manage to experience one more. Something, anything, triggers one more emotion, or increases the intensity of one that you're already feeling, and it becomes too much.

    When you're battling emotional overload, or in danger of doing so, your mind and body feel at a constant tug of war. Not with each other, but with the world. With life. Often, you can't pinpoint what you're actually feeling, because it's as if you're feeling everything. Every possible emotion at once. You feel as if you're literally sucking in emotion as you would oxygen. What's worse is that you're acutely aware of the precipice on which you stand. You know that if one tiny things throws you for a loop, if one person says something to upset you, that you may well fall into that emotional abyss. Which creates more anxiety.  You sit there silently begging the world and everyone in it to not upset you, to not sling a curve ball at you because you cannot handle it right now. It puts you further on edge, anticipating such a situation. Because that's what anxiety does. It creates the worst possible scenario, no matter how unlikely it actually may be. It makes that scenario so real that your brain works overtime trying to solve an issue that doesn't even exist yet.


    What's worse is that all the while this is happening, you are fully aware of what will occur if you are pushed past that breaking point. How it affects us each is slightly different, but we are all acutely aware of what it does to us. I know that I will break down. I will become a crying mess, unable to speak, to barely be able to sit up straight, unable to think. I will shake violently, as if the emotion is trying to force its way out of my body. I will question my life, and the point of it. I will feel as if I cannot possibly scale this mountain that's in front of me, this mound made up of every tiny task or situation that requires my brain, my body, my emotions. I cannot get through the mess of my brain to make even the tiniest decision. I will question my sanity, because even while this is occurring, beyond my control, I feel that I should be able to handle it. I know that really, they are mostly small tasks or situations or difficulties. They are small inconveniences or at worst general life trouble that. But now, they are impossible, and feel as if they will always be that way. Life seems too much too handle.

    I know this will happen not from exaggeration but from experience. I know this will happen not because I can't put things in perspective or need to calm down or am ungrateful or think I have it so much worse than others. None of that could be further from the truth. I know this because this is what happens when you battle anxiety and panic and depression and mood cycling. This is what they do to you. It is part of the illness. It's part that you hate, that you despise, for how it makes you feel about yourself, despite not having control of it. That's anxiety and depression's worst trick - convincing you that it's your fault.

    Emotional overload isn't a technical term. It's not a specifically defined symptom of any mental health condition that I know of.  Not one used directly to diagnose. Nor is it the same as the type of "emotional overload" that people toss around in the way they toss around OCD and ADD and bipolar as "everyday" words. It is, sort of, a way of life with a mental health condition. It is something you know, just as you know what it feels like to be hungry or thirsty or tired. It's something that you may objectively think you can prepare for, but that when it occurs, results in a horrendous struggle. For me, it is the culmination of all of my symptoms, all of my illnesses combined. And I do not wish it on anyone. 

    Thursday, May 25, 2017

    There Is No Formula For Success

    I need to vent. Kind of. But also to impart some advice. My advice seems obvious, but in the wake of 'how to succeed in this or how to do the perfect that or how to get everyone to love you" or whatever books and articles and all of that, it's probably a relatively unpopular thought. Are you ready? Here it goes:

    There's no actual formula for success. 

    Bombshell, right? Well, considering that it's the title of this post, probably not. But it seems that these days we're inundated with the "right" way to do things. And if we don't, we're screwed (most books don't say this, but it's implied). Which really freakin' sucks for those of us who aren't able to do so. But let me let you in on an obvious secret: we're all very unique individuals, by nature of being human beings. What works for me may not work for you, and vice versa. What works for 99.5% of the population may not work for you, either because of your personality, or an illness, or a life circumstance, or some other reason.

    So a few tips, if you're feeling badly about yourself/unsuccessful/worried you're not on the right course:

    • You do not have to get up at 5AM and go for a sunrise run in order to be successful. Especially if you absolutely hate the mornings but are awake at night. Or if you are ill or in pain and it's physically difficult to run. Or to get out of bed at 5AM, for that matter. May exercise help? Sure, possibly. At the level you can handle, and the time that you feel most energetic. Don't make yourself more ill because some book written by someone who's not battling chronic illness says it's the only way to be successful. 
    • It doesn't matter if you read the latest "how to" business book that everyone's raving about, or every book of Calvin and Hobbes (link for those born after the 80s). In fact, I probably have a lot more in common with you if you read Calvin and Hobbes. (Confession - I strongly dislike business books. I could fall asleep while drinking a triple espresso if there's a business book involved). No one person (who's not you) can tell you what will work for you. So despite all those lists that say "successful people read xyz and watch abc and do blah-blah-blah", don't worry. Maybe you're so busy being a successful... whatever it is you do... that when you get home at the end of the day you don't have the mental energy for a business book, and you choose a comic or a romance novel or to read nothing at all. Don't sweat it, you're just fine. 
    • You don't need to color within the lines. The people who stand out... stand out. Don't worry if you "march to your own drummer". I can't think of another cliche about being unique or I'd put it in here.  But you get the point. One day, that uniqueness will get noticed, and you may well stand apart as someone who has a talent or an ability or a skill that's exactly what someone is looking for. And maybe they wouldn't have noticed if you followed the norm, the "rules". 
    • You do not have to be all chipper/24-7 optimist/hell yeah fist pump in order to be successful. Nor do you have to be extroverted. You can be quietly doing your own thing, slowly making your mark. You can be changing one aspect or even one life at a time, without much, if any, fanfare. 
    • All the inspirational quotes in the world won't make you a success (unless you strive to be successful as an inspirational quote writer). It doesn't mean that they aren't important. Helping inspire people is incredibly important. But authenticity, or lack thereof, shines through eventually. Make sure that, above all, you're being you. Whoever that is. 
    Now, I'm not knocking people who read business books, or run at 5AM (I do work out around that time, but that's due to enjoying food and being an insomniac, not in a 'successful" effort). This is nothing against those who color within the lines or are super optimistic all of the time.  But sometimes, especially when you battle illness, these can be nearly impossible. That's OK. You can still be plenty successful. There's no formula, no right or wrong way. You do you. That, perhaps, is the only rule I will follow for success. 

    "Be yourself. No one can say you're doing it wrong."  ~Charles M. Schultz

    Wednesday, May 24, 2017

    On Those Days When You Just Want To Run Away

    I know the feeling. There are days that you wake up and you think, "I just can't do this." It's not a specific task or job or anything - it's just this. All of this. There often isn't a specific "reason" per se. It's not that you're in so much more pain than the day before. It's not that anything traumatic has happened. It's just that life is looming. Closing in on you. Sometimes, it's a last straw. One more thing goes wrong, and you just. can't. take it.

    When this happens, there seems only one plausibility: run. You think that if you could just up and leave, start a new life, maybe you could outrun illness. You picture this new life in which you're in some new town or foreign city, where you've somehow managed to make work everything that you can't now. In this new life, you're not socially anxious - you can actually talk to people and make friends. In this new life, you can actually handle stressful situations without melting down and crying. In this new life, you have skills and talents that actually make you feel like you have something to offer. And you have confidence that make you feel "worth it", able, capable. And you actually are. You feel that if you could just start fresh, you'd be OK. You'd be able to get up in the morning without dread. You wouldn't feel so dark and lonely and alone. You wouldn't be so anxious, so fearful.

    Now let me clarify, this generally has nothing to do with specifics. It's not that you're unhappy with your friends or family or partner. It's not that you dislike your job. It's not that you're ungrateful and think you have it so bad, or lack perspective. It's just that you physically, mentally, emotionally need to get the hell out of dodge, and you feel like you'll break if you don't.

    I'm not going to sit here and give you platitudes. You'll get no "but there are starving children in Africa" guilt from me. Because that's not the issue. You know it's not, and I know it's not. The issue is that you feel like you just don't belong in your life.  Those closest to me will often hear me say, in my darkest moments, how I feel that I don't belong in this world. Like I was born in the wrong century in the wrong place, and that no matter how far I wander, I'll never feel at home. Because even if I get to the right place, wherever that is, I'll still be in the wrong century. It feels like I'm hollow, unfulfilled. Like until I find the "right" place and time I can't understand why I'm here. It feels lonely and isolating, and worst of all, I blame myself for it. It feels that if I can just run far enough, maybe I can outrun that self-blame. But that no amount of "you do so much good" or other similar words will help. The only words that could possibly help would be "wherever you run to, I'm going with you" (by someone close - otherwise that's called a stalker). Because at least I know I wouldn't be alone.

    I wish I had a solution to offer. I don't. But I can tell you that I know what it's like. And if it helps you to vent to me, to tell me all about where you'd run to and what you'd do and what you dream of your life being, then I'm happy to listen. Imagination can offer hope, and sometimes, it's enough hope to lessen the need to run away.  Or perhaps knowing that someone else understands helps you to feel less alone. Less estranged from everyday life, from the world as a whole. The only other thing that I can suggest is to create a system of "mini breaks". Perhaps it's that you have a notebook, or a bulletin board, or a jar in which you toss written suggestions of those ways to give yourself a mini break without actually having to run away. Maybe it's going for an actual run. Maybe it's taking a drive, or a day trip out of the immediate area. Maybe it's doing something fun that you don't often do - something that reminds you of your childhood, or a happier time. Perhaps it's simply writing out your feelings, or daydreaming with a friend. Try to think of those things that could take the edge off the need to run away. They may not solve it all together, but they may give temporary reprieve. Hopefully, the need will eventually pass. I realize that doesn't offer a ton of hope, but it is, unfortunately, the best I have. And always, know that you aren't alone.




    Friday, May 12, 2017

    What I Wish You Understood About Chronic Fatigue

    I don't write about it often, but I've battled chronic fatigue syndrome since the time I was 11 years old. I got Epstein Barre virus, and basically it never went away. It simply morphed into CFS, which is one of those odd things that illnesses can do. Morphed probably isn't the technical term, but I don't think they really know what caused it, so it's as technical as I can get.

    CFS, also referred to as Myalgic Encephalomyelitis (ME), is an often misunderstood illness. We often hear statements like, "Well everyone gets tired" or "You just need to get more sleep". Sometimes it's "Tell me about it, I've been so busy" or my "favorite" (i.e. the one that makes me want to smack you/vomit) "Welcome to my life," followed by a litany of how they're so busy with work and PTA meetings and little league baseball and their side business selling jewelry or leggings or whatever.  Decidedly NOT listed in that list is chronic illness.  I want to make some super snarky comment about how PTA meetings must really feel like hell (in fairness, they probably would to me), but I keep it to myself, on the off chance they're not telling me about a chronic illness they do in fact have. But still, there are clearly a lot of misconceptions about ME/CFS, and I'd like to explain what it actually feels like, at least to me.
    • I'm not just tired or sleepy. I'm not even just physically exhausted. There are times when I feel like someone has drained the blood from my body, making it impossible to function. I'm physically, mentally, emotionally exhausted to the point that just doing something, but thinking about doing something, is too much to bear. 
    • There are physical symptoms (in addition to the exhaustion). I get mysterious numbness in my hands and fingers, I get swollen lymph nodes under my arms, and at times it can hurt to put my arms down by my sides.
    • My limbs feel weak and unimaginably heavy. 
    • Sleep often doesn't help. Sure, it helps compared to not getting sleep, but that would be the same for anyone - all humans need some sleep. But it seems at times like I can never get enough sleep. And yet I'm not sleepy - not as in yawning, maybe I'll take a quick nap sleepy. I'm completely drained. There weeks I nap every day after work and go to bed by 9PM and still, it seems like it's not enough. 
    • There are headaches and joint pain that almost become "just part of how you feel". I honestly, and I'm being 100 percent serious here, cannot remember the last time I didn't have a headache, or that my body didn't hurt.  
    • It's not always when I'm busy or running around. I can be relaxing at home and feel barely able to move. 
    To be clear, I'm not saying that those with hectic schedules and three kids and two jobs aren't legitimately tired - or even exhausted. I'm sure they are, in fact. I'm asking them simply not to dismiss the way I feel because "they know what it's like" or "everyone gets tired."  They do not know what it's like, unless they battle illness exhaustion, because it it's a different type of exhaustion all together. And perhaps everyone gets tired (in fact I'm sure they do) - but that minimizes an illness that can at times be debilitating.  I wouldn't minimize your asthma because I'm winded after I go for a run. You're lack of breath is an illness. Mine is being out of shape, at least when it comes to running. This is the same thing, and I'm asking people to be a bit more aware and understanding.

    Why am I writing about this now? Because May 12th is International Awareness Day for Chronic Immunological and Neurological Diseases, including Me/CFS, Fibromyalgia, Golf War Syndrome, and Multiple Chemical Sensitivity (I don't know about the other illnesses to write on them, so will let others do so). It's incredibly important that we bring awareness to these illnesses, which are so frequently brushed off when "we don't look sick".

    Wednesday, May 10, 2017

    Today, I Empathized With A Mouse

    Some background:  My fiance and I (and our dog) are currently staying with my parents while our condo is under kitchen and bathroom renovation (complete tear down and rebuild). Over the past few weeks, we've noticed that something other than ourselves and our dog has been munching on the food in their pantry. Now if you know anything about me, you know I'm a strict vegetarian that literally can't hurt a fly. But I also understand that my parents don't want mice traipsing, among other things, around in their food.

    My parents, being the good people they are and knowing that I can't stand to see a creature harmed, put out sticky paper so that they don't have to kill the mouse, but can manage to relocate it outside. This morning, a mouse, being unknowingly obliging, got his or her foot stuck on the sticky paper. My parents shielded me from it by telling me to stay downstairs, so that I didn't see the mouse struggling at all, while they brought it outside, extricated it's foot from the paper, and set it free in what seemed as safe a spot as they could. And I love my parents for doing the most humane thing possible outside of just letting a mouse wander through and poop in their food, potentially spreading any disease that goes along with this.  But still, I broke down. 

    It wasn't really about the mouse. Yes, I was sad for it. Being the highly sensitive person and empath that I am, I hated the idea of a living creature experiencing any pain or discomfort. But more than that, I empathized. I pictured that poor mouse stuck, having no idea why, with no clue of what to do, trying in vain to move and run but being trapped - not in an actual trap, but by its inability to go anywhere, struggling for the little movement it had managed to obtain, all the time confused about what had happened to it. And in that moment, I felt just like that mouse. 

    Lately, that's exactly how I feel. Depression, anxiety, and mood cycling can stop you in your tracks. There are days, weeks, months where you can try as hard as humanly possible and you can't break out of it. No matter how much wonderful you have in your life, no matter how grateful you are for the support you have and the good things that come your way, it doesn't matter. The sadness takes over, the anxiety sets in, the cycles continue despite every attempt to stop them. Your life seems to halt, even though the world goes on without your feeling able to participate in it, at least not as you wish you could. You feel that you're going nowhere, that you have no hope, that you aren't able or capable. It feels as if everyone else is, and somehow you just fail - like someone else could do exactly what you do and they'd be successful and moving forward, but when you do, there's nothing. Some days, you just don't feel like you have the energy to even try to fight it. Like you're that mouse, and you eventually realize that all your struggling to move just takes precious energy that you're already lacking. 

    And on top of all of this, unlike the mouse, you often must try to pretend it's not happening. It's not acceptable to spend your days curled in the corner of your office crying, unable to interact with coworkers or clients. Or maybe there are those who don't understand, and when around them you feel it's easier to just put on the mask. Or perhaps you're simply tired of everyone thinking of you as "that person who's so depressed and anxious that they can't handle anything." Do you know how frustrating it is when people assume you're anxious even when you're joking and happy? But they're so used to you being worried about everything that even what sounds like a joke to you comes off to them as seriously upset. Even in your happy moments, when they come, you have to deal with the results of depression and anxiety. And so you just smile and nod and say you're OK, until those days when you can't. Then, you do those things you absolutely feel you must, and then quietly retreat, cocooning in yourself in an attempt to heal through isolation. 

    I realize that this is a lot to get from a mouse with it's foot on some sticky paper. And there may be some ever-optimistic people who say "But look, the mouse got out free! Your parents made sure it was safe!" And that did make me happy. It managed to bring a bright spot into an otherwise incredibly tough morning. But the difference between me and the mouse is, there's nobody who can ensure I will be Ok. They can help me along the way. They can support me. They can be there for me on the days that I'm not, and they can try to lift me back up. And perhaps nobody can ensure that the mouse is OK either - nobody knows what happens to it after it ends up in the field, and that's life for all of us. But in that moment, we could. We could take care of that little mouse and set him or her free, and hopefully he or she felt like it had a new chance at life. I'm sure there are people ready with platitudes to say things like "Every day you wake up is a new day and a new chance at life". But that's not true, not really. Because I still wake up as depressed or as anxious, or I'm still cycling badly. There's nothing new about it, and that's the trouble. I'm stuck in that trap. Nobody can magically set me free and say "Go, run, live! You're saved!" And while a week from now that mouse may have no memory of the sticky paper on which it struggled, there's not a day that goes by that I can forget the illnesses I battle, even if they're just kind of sitting there quietly on the periphery.  And so many days I wish someone could just say "You are too precious to hurt, even though you don't really belong here. So we're going to save you. And once again you'll be where you belong, running free." 

    Sunday, May 7, 2017

    What If I'm Not Ready To Talk About Mental Health?

    As a mental health advocate, my opinions on mental health conversations are obviously a bit one-sided. I wouldn't be much of a mental health advocate if I told people not talk about mental health. But as much as I want to tell everyone they should loudly voice their support, I also need to understand that some people might not be ready, and I have to respect that every individual is different.  But I'd like to help. So first off, let me ask you why? Without knowing why, I can't give any guidance. Here are a few of the most common answers I hear.

    Is it because you are afraid of repercussion? From friends, family, your work, other sources? 

    Is it because you are a private person, and would be unsure of talking about any illness, physical or mental? 

    Is it because you don't know how to? 

    Is it because you're afraid of being vulnerable? 

    Is it because once you step across that threshold you can't go back? 

    Is it because you are afraid of being defined by your illness? 

    Is it because you're afraid of what you might learn about yourself? About your loved ones? 

    Is it because you're afraid you can't make a difference? 

    Let me be the first one to say, these are all understandable reasons. When you begin to talk about mental health, a lot changes. It takes incredible strength and courage to do so. Let me address each of these fears as candidly as I can.

    • This could happen. Technically, the ADA protects you at work, but it doesn't protect you from people's attitudes towards you. And it doesn't protect you at all when it comes to family and friends. Before you speak out, please know this. I would not be a good advocate if I pretended it was all roses and rainbows. But I will also tell you that as much as some people may surprise you with their lack of support, there will be people who surprise with support you never imagined. People that I never thought even paid attention to me have reached out to not only offer support, but to share their own stories.  I've reconnected with numerous people from my past, and I've made some wonderful new friends. Remember that one out of every four people in the U.S. has a mental health condition. To understand the full impact of this, next time you're in a room with four other people, look around - one of those people, statistically at least, has a mental health condition. And like you, they may feel unsure and alone. By sharing your story, you let them know that they're not. 
    • There are absolutely ways to support mental health without having to overtly tell your own story, especially to start with. You can begin by donating to an organization or or sharing a social media post. If a friend is participating in a walk or an event, supporting them shows just that - you support them, and because it's important to them, and they're important to you, it is, by extension, important to you. 
    • This is the easiest one to answer: Ask. Us advocates are always sharing ideas. You don't have to reinvent the wheel, just join in. 
    • This is unavoidable, I'm sorry to say. When you open up about something, you're vulnerable. But please do not confuse vulnerability with weakness. It is anything but. It takes incredible strength to make yourself vulnerable, especially in the face of stigma. 
    • Also true. But I promise that the first step is the most difficult. If you'd like, think of advocacy as you would a physical goal - say, running a 5K. First, you have to say "Ok, I'm going to start running." Then, you have to get dressed in your running attire and leave the house. The first day, you may only make it a couple of blocks, or less. But now, you know you're physically capable of running, even if just a block or two for now. Each time you get dressed and go running, it becomes less scary. So no, you can't go back - just like once you go for a run you can't ever say "I've never gone for a run in my life." But you don't have to sprint out of the gates either. And you can hold steady at any point. There's nothing that says you have to run every single day (or nothing that forces you to at least). And there's nothing that says every advocacy action has to be grand. Dip your toes in, and go from there. 
    • There are two types of people who will define you by your illness: those who don't know/understand, and those who are determined to stigmatize. The first group, you can educate. Those are actually the people you want to reach, so if you find them, take it as an opportunity - people who are open to learning, but they just truly don't understand. People don't know what they don't know, and this is where advocacy can truly make a huge impact. This is your chance to really explain, to help them learn. Maybe even get them involved somehow if they're receptive - experience is the best teacher.  Ask if they want to participate in a walk, or some other activity that you're doing. It doesn't have to be anything monumental.  The second group, those who are determined to stigmatize, have made up their mind. It's unlikely that anything you do can change it. So don't waste your energy trying to.  They aren't the people who want to surround yourself with so, don't, unless you absolutely have to. And most importantly, make sure that both of these groups know that you don't define yourself by your illness. Leading by example is always the best way, and sometimes, even if people understand a concept in theory they need to see what it looks like in action. 
    Talking about Mental Health, especially as it relates to ourselves, can be scary. In fact, it often is, especially to start with. And as much as I wish everyone was ready to talk about it, and to others hear about it, I understand that they're not. So start with yourself. Write it in a journal, or even a private document (Word doc, private blog, etc) that nobody else has access to. There are even apps to get you started. Start describing your feelings, your emotions. If you are diagnosed, start using the terms of your diagnosis - depression, anxiety, mood disorder, whatever your condition is. Hearing yourself say these, seeing yourself write them on paper, makes it less intimidating - kind of like that first run. Sometimes, the most difficult person to tell our story to is ourselves, so start there. In time, I hope you'll be ready to talk about mental health. You can always reach out to me as a start. I am happy to listen. 

    Tuesday, May 2, 2017

    Why Mental Health Month Is So Important

    Yesterday was May 1, so I'm a bit tardy. My days have been incredibly long, and I haven't had a ton of time for blogging, but I'm trying to prioritize it once again. May is Mental Health Month, and that's important, and so it's pushing me to pick up my pen and paper open up my blog page, and start raising my virtual voice.

    Why is Mental Health Month so critical? Quite simply, because we shouldn't need it. We shouldn't need a month that tells people it's OK to talk about mental health. We shouldn't need a month to work on eliminating stigma. We shouldn't need statistics that tell us how prevalent mental health conditions are, or how many people take their lives each year - each day even -when people try to deny that mental health is a priority. We shouldn't need to explain at length, ad nauseam, why mental health is no different than physical health when it comes to how we should be treated, both as people, and actually medically treated. We shouldn't have to be fighting to take a sick day for our depression, when nobody would bat an eye at us taking a sick day for the flu. We shouldn't have to explain that we can't just think happy thoughts or smile more or calm down or look on the bright side or be more grateful. We sure as hell don't need to be told to just pray about it and we'll be "saved" - we need therapy, medication, understanding, concern, people taking us seriously, not an exorcism.  But we do have to do this. All of this. Sometimes on a daily basis.

    We have to listen to "well everyone gets depressed", or "we all get anxiety", by people who think that depression and anxiety really mean being "down in the dumps" or simply stressed.  We have to listen to people say things like "omg she keeps changing her mind, it's like she's bipolar" (yes, I just used "omg" in a post, because to me, that's the least ridiculous part of that statement). We have to hear phrases like "I'm so OCD today; I think my ADD is acting up today (when they have neither); I'm so depressed I have nothing to wear to this party." While we sit there not wanting to get out of bed, not feeling like there's a point to our lives, like people would be better off if we just never existed. I don't have OCD or ADD, so I won't pretend to know what it's like to have those, and to hear these comments. It must be frustrating as hell.

    We're constantly bombarded with the media creating monsters out of illnesses, touting how people with a mental health condition are violent, oblivious of the fact that people with a mental health condition are 10 times more like to be victims of a crime than perpetrators. But there's no media that will stand up and say that, so we have to listen to it. And then we have to listen to people - often people we know, sometimes even those we are close to- believe it and worse, repeat it.

    This is why we need Mental Health Month. And we will need mental health advocacy not just during this month but every single day, year round until this type of stigma goes away. Thank you for listening to my rant/vent, I am much obliged. Now please, get out there with me and help me fight this stigma.