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.