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. 

Thursday, April 27, 2017

I Have Anxiety, But I'm Not Always Anxious

Lately, I've been noticing something. People seem to think I'm always anxious. Always. I'm (happily) excited about something, people tell me to calm down. I'm joking about something, people think I'm serious and try to calm my fears. I post a curious question on social media and people tell me "not to worry about it" "don't stress yourself out over it". And let me say, I do appreciate their concern, truly.

But the thing is, there are plenty (and I mean plenty) of times in my life when I'm legitimately anxious. Because I suffer from anxiety. All too often, I have to deal with the "relax", "calm down" comments from those who don't understand it, because anyone who does knows that you can't just relax and calm down. So when I'm not anxious, it's even more frustrating to deal with this. Not to mention, the fact that I can't even joke around without people going into "oh no she's anxious again mode" makes me feel like people must see me as a giant bundle of nerves who can't ever relax, joke, or have fun. I lately feel like whenever I post something, I have to add an emoji or "LOL" or "J/K" to clarify that I am not being serious.

The thing is, for those who don't know me well, I have a dry sense of humor. So I get that sometimes, especially in writing, I come off as serious when I'm not. Which basically makes me sound like  either a sarcastic ass or a person continually on edge. And sometimes, I am (continually on edge - hopefully I'm not a sarcastic ass). But it's difficult when you feel like you have to clarify every single tiny thing. It's exhausting to have to continually say "I'm just kidding", or to add a follow up explaining what you meant, or that it was a joke. It's frustrating to get all of the comments more or less saying "relax" or "it's not a big deal", when you weren't actually stressed out in the first place. When you were just joking, actually trying to be light.  It makes you wonder "Geez what do people think of me that they think *this* is a serious concern for me.' Do they really think I'm that incapable of handling anything? And I'll be honest, it makes me unable to enjoy the times I am feeling positive, because all of this then makes me anxious.

The thing with anxiety, and all mental health conditions, is that just because we always have them doesn't mean that we are always experiencing the symptoms acutely right in the moment. Think about it this way:  you may have asthma or diabetes, and you may always "have" it, but you aren't always suffering from an asthma attack or a blood sugar crisis right then and there. It might always be a possibility, that it could come on, but it's not always happening right in that moment. Just because a person with asthma coughs doesn't mean they're going to have an attack. Maybe they have a cold. Maybe they're eating and swallowed something in a funny way. It's the same with mental health.

Now, there are certain areas or topics that may make me more prone to anxiety than others. Changes in plans, for instance, especially when they're last minute. Or running late - I *hate* running late, especially if it inconveniences someone else. Or not having control of a situation. Or group.... anything. I know it can be difficult to tell. But please, give me the benefit of the doubt. If I am anxious, I'll usually say something. If I need help, I'll definitely say something. And if you're truly concerned because you see a pattern of posts or tweets or whatever that look... well... concerning, I will be more than grateful if you reach out to check in on me. But please don't assume I'm always anxious. I know my anxiety has gotten worse lately, but especially if you steer away from these topics and situations above, I promise that I can be lighthearted too.

Tuesday, April 11, 2017

I Didn't Used To Be This Way

When I was in my early to mid 20s, before my diagnosis though not before my illness set in apparently, I was given the nickname "energizer bunny." I've never been sure if it was a legit compliment, a backhanded one, or more of an observation, but still, it speaks volumes. Turns out, in hindsight, I was hypomanic and unmedicated much of the time. But still, I've always had a pretty high level of energy. I also used to think I had a general love of fun, and people. I drew people to me somehow, and I was actually OK with it, though even then I sometimes felt like it wasn't all real - like I was somehow unintentionally fooling everyone.  That I wasn't really as likable or successful or fun as they thought, but that through some actions other than my own (I am no actress and I have never put on any type of front), people thought that I was. But still, I felt fun and social.

Ten to fifteen years later, I have no such illusions. At 37, I spend the majority of my time hoping to keep myself in the cocoon of me, my fiance, our dog, and a couple of trusted family members and loved ones. Now, I'm often so exhausted that people actually ask me if I've taken something to make me sleepy because I'm obviously struggling to keep my eyes open in the middle of the day. And while my medication can make me a little more tired, it shouldn't make my eyelids turn to lead (at least not the one I take). These days, I sincerely sit there on Fridays hoping that we have no plans and can just relax at home. If I make it to 10PM it's a late night. If I manage to put on anything other than pajamas when I get home from work (even on the days when I get home from work at 2:30PM), I impress myself.

These days, I have so many triggers and anxieties and social fears that it borders on concerning. I feel bad for those around me, especially my fiance, who has to accommodate these on a weekly, and often daily, basis.
  • If it's a group event (as in going with a group), I panic:  I'll have to socialize, which often means small talk, superficial, surface level. It means people actually looking at me. If it's people I don't know (or don't know well), it's worse.  What if nobody else likes me? What if I'm too quiet or awkward or different? What if I actually get comfortable and let go a bit, and then I'm too loud and talkative, as I do, and it annoys everyone. What if they're standing there thinking, "God would she stop talking?" I have this fear almost continually, even with those closest to me. What if they think that because I'm talkative that I'm anxious or stressed or high strung? This happens all the time. When everyone else is energetic and excited, they're friendly and happy. When I am, people think I'm stressed and tell me to calm down, or just think I'm too high strung. Even when I'm happy or joking around. It's SO FRUSTRATING - My anxiety finally eases in a situation and people tell me to calm down thinking I'm anxious. I've become so self-conscious of it that I constantly feel the need to clarify that I'm just joking. People thinking I'm anxious when I'm not actually makes me anxious. It's awful. 
  • If I can't control the schedule or transportation, anxiety is extreme. What if I have a flare up or an anxiety attack or a panic attack and can't leave? What will I do? What if my ME/CFS hits and I get so exhausted that I can barely stand up straight? And then I come off as no fun. I don't want to bring everyone down. I don't want the people I'm with to have to leave because of me.
  • Does it involve a lot of drinking? These days I can't drink much because of how it affects my depression, among other things (fatigue, IBS, migraines, to name a few). And as I get older, drunk people annoy me to no end. I can't see why grown adults need to dedicate a whole days or even weekends to getting drunk. So by this point I'm worried I'll be too awkward or annoying, have a flare up, not be able to leave, and annoyed as shit, and it'll come out at everyone. Talk about a downer. 
  • Will I have to be out late? I know my anxiety over getting enough sleep will not let me sleep in, so then I'll just be lacking sleep which will make me cycle more. And then I won't sleep. And the cycle continues. 
  • The after-effects. Peopling and the anxiety and fear it causes can physically hurt at times. It can take me literally days to recover. The exhaustion, the anxiety, the anticipation even if I don't end up having anxiety when there, the worry over being too loud or quiet or awkward or whatever. It takes so much energy to put on the mask. To pretend I''m ok when I'm not, that I'm having fun when I just want to go home, that I'm not literally sweating from anxiety. It takes so much effort that it's draining. And I hate that my options are to either go through this or affect the plans and social lives of others. 
I didn't used to be this way. I used to be energetic, and fun. I used to go out and have fun and be the person people wanted to invite. And, though I always lacked a little confidence, I didn't constantly feel like people were just throwing me a bone. Like I was included to not hurt my feelings. Now, there are drastically few people (who aren't related to me) who I feel actually want to. And I don't say this for sympathy or for reassurance or accolades. I say it to illustrate how my illnesses have impacted me in ways that those without chronic illness may not think about.

I also used to be more able, more capable. 10 years ago, and this is going to sound super conceited but I don't mean it this way, I wouldn't have taken on projects and just not been successful at them. I wouldn't have done a charity walk for a cause so important to me and have to literally beg some of even my closest friends to give just $5. 10 years ago, I wouldn't have started a blog that I had to beg friends and family to follow (on the blog site, not just occasionally via Facebook posts) and share. I never would have had my advocacy efforts flop so spectacularly, when I put my heart and soul into them. I don't know how I did it, but I managed. It was like I was a different person. And while I'd tend to think that luck, it happened with almost everything from work to school to projects to social life (OK, not my first marriage, but that's a different story), so it must have been at least part me. Now, that probably sounds spoiled, but I worked my ass off for every single thing that I undertook. It was blood, sweat, and tears that got me those things. It was working through what I now know were cycles, and ME/CFS flareups, and IBS, and BDD, and eating troubles. It was going through that and accomplishing all that I did. And yet now, I work as hard as I can and it feels like so little works. It baffles me. 

I did not used to be this way. I didn't used to be so afraid and nervous and cocooned into myself. I didn't used to be so little fun. I didn't use to fail at so much. I didn't used to feel like a burden, like without people helping me wouldn't be able to stand on my own two feet. I didn't used to feel so in need of accommodation. I feel guilty when we have to say no to yet another social outing because of my illnesses. And sometimes I wonder, should I just force myself? But then I try, and it's usually disastrous. I break part way through, and then it's not only un-fun, but probably downright embarrassing for the people involved. And it makes my illnesses flare more badly, and I realize why I don't force myself. 

I know that life could be so much worse. Lack of social abilities and struggling advocacy goals doesn't hold a candle to, say, not being able to walk or breathe on my own; or not being able to digest anything and have to monitor every tiny thing I intake; or having to go through chemo and surgeries. There are so many people out there that are so much worse off and so much stronger than me. But it weighs on me, feeling an unsuccessful burden. And sometimes, I think "I can do it too. I can be strong and feel successful too!" So I get all ramped up and I put every effort into things - social, advocacy, writing, etc - and they crash and burn. And I think, "No, I simply used to be that way." 

Wednesday, March 29, 2017

An Introvert With Anxiety Walks Into A Coffee Shop

I'd say a bar, but I don't really go to bars much because... people. Sometimes lots of people. Sometimes loud, annoying, drunk people who bump/push/fall into you. So, an introvert with anxiety, both general and social, walks into a coffee shop. That was me one morning last month.

I needed some headspace, and I didn't have to be to work until later than usual (woo hoo holiday hours!), so I thought I'd relax and write, sip some coffee, and have a granola parfait. For some reason, I thought that being a holiday, the cafe would be less crowded. I figured people stopped in on their way to work, or had their informal business meetings there, and being a (bank) holiday, they wouldn't be doing this. At first, I was affirmed.  I walked into only a handful of people there, dispersed throughout the shop, bought my coffee and parfait and sat down. I was about two minutes into writing when a pair sat down at my table and started talking - not to me, but still, talking. 

Now, the tables are "communal", but they aren't overly large tables - I think five chairs, and one of those is on the short end (head of the table style). In fairness, this pair sat on the corner, so I have to give them that. They didn't just plop down next to me and completely invade my large sphere of introverted personal space. But still, I ask before I just sit down. Maybe that person is expecting others. Maybe they're just having a really shitty day and need to not have two strangers sitting at the same table in relatively close quarters. Maybe they've been hermiting themselves away and finally had the courage to come out some place, but weren't ready to be sharing their table with people they don't know (or do), because being out with other people is about all they have in them. 

To be clear, I wasn't upset at this pair. They didn't do anything wrong. I was anxious. They didn't say anything, but I'm pretty sure that I was visibly slinking towards my little corner of the space. If I'd slid over any further, I would have fallen off my stool. I actually pulled my coffee, parfait, and notebook closer towards me, like some sort of invisibility shield. As the coffee shop continued to fill up, a line formed right past my table. People stood on either side of the line (and the space is not large) waiting for their orders. This included people standing almost immediately next to my table, like I could have reached out and touched them (I didn't, that's creepy). I actually felt like walls were closing in. My breath started to get shallow, as it does with anxiety. 

And then, something miraculous happened. A dog walked in. A good sized dog (my favorite!) that looked like a yellow-lab, German Shepard mix. And the people melted away. I looked imploringly at the dog. By which I mean awkwardly stared, hoping the owner would say "Oh she's friendly, you can pet her". It did not happen, much to my chagrin. But for that ten minutes while the dog was in the coffee shop, my anxiety was in the background.   I don't know why dogs are less intimidating than people. But I do know that I could have 10 dogs literally sitting on me, or two people sitting five feet away at the table, and I'd take the 10 dogs any day. 

Now, I get that extroverts without social/anxiety probably think: "Well, if you don't want to be near people, don't go to a place where there are likely to be people."  And they have a valid point here. Which is why I tend to like to be home and with loved ones. I'd rather spend a Friday night reading than out at a party.  In fact, I actively avoid social situations where there will be 1.) a lot of people  and 2.) particularly, people I don't know. Because those involve interaction and quite often, small talk/superficial interaction, which is tricky and unpleasant for the introvert side of me. Talking about unimportant stuff that I really don't care about because I'm obligated to seems rather pointless and soul dredging. But coffee shops, minus a quick "I'll have a black coffee and a parfait", don't tend to involve this. So they are a safe haven. They give me the opportunity to be out and about without having to be overly social. But when people start sitting at your table, holding conversations two chairs over from you, that blurs the lines for me. They're "kind of" in your personal space. They're not interacting with you, but they're at the same table, not far away from you, and talking. You could jump right into the conversation if you felt like it (of course I didn't). It's a weird feeling. 

Luckily, they finished their drinks and left, hopefully no wiser to my massive level of discomfort. I felt bad - this wasn't their fault, and they were doing what many people do at communal, albeit barely, tables in a public space. So I tried my hardest to look pleasant and avoid any eye contact that might give it away. But I'm curious what other introverts with anxiety would feel. Would this type of thing make you anxious? What if they were dogs (insert favorite domesticated animal here) instead of people? Are there other situations like this that have given you bad anxiety in the past? Do you have tricks for getting past it? I'm all ears!

Wednesday, March 22, 2017

Hakuna Matata

I recently spent almost two weeks in Kenya and Tanzania. I travel often, and this wasn't my first trip to Africa, but it was certainly the most ambitious trip I've taken - there or anywhere. Now don't get me wrong - I wasn't camping out among the elements.  My "tented camps" were luxury five-star, complete with king sized beds and state of the art private bathrooms/showers, plus basically personal waiter service at every meal - in the five-star restaurant on site. Plus we had a private guide each day who knew exactly where to go and what to do.  We weren't roughing it. But still, there were a lot of (literal) moving pieces, and a lot that could have gone wrong - travel wise and health wise.

First, I had to take antimalarial medication. One of the warnings of this medication is that it can cause some depression. I've taken it before without issue, but considering I already battle depression, each time I take it is a little nerve wracking. That said, I'm unfortunately familiar with depression and figured that I could get through it for the trip. I do not want to also be familiar with malaria, so I took my chances. Secondly, there were a lot of potentially anxiety-producing pieces. Such as long plane rides (I don't like flying, ironically). And short plane rides on 12-seat planes. Which I found out by unfortunate experience, are not pressurized and cause altitude sickness. Did I mention I get migraines with altitude? And suffer from vertigo and motion sickness? I vomited my way through the 45 minutes between Nairobi and the Mara and it took most of the afternoon to recover fully. It was quite possibly the longest 45 minutes I've ever spent. In addition to the health stuff, both countries required a visa, one of which (Kenya) we got before hand, but the other (Tanzania) which we had to get at the border. So while it was unlikely, there was always the slight possibility that they could not let us in. That kind of thing makes me anxious. Not just while I'm going through it, but days, weeks, in advance. It's an unknown, and I don't like unknowns. There were other pieces too. We were told that our local tour operators would meet us on the ground with all the vouchers for the flights, accommodations, tours, once in Nairobi. So we literally flew over with just our overseas flight details and an itinerary saying that we'd be met with the rest of our documents for the entire trip. Again, unknowns. I had to just bank on everyone being where they were supposed to and having what they were supposed to every step of the way.

When we got there, everything changed. I found (minus the whole vomiting through an entire flight) I felt better than usual. In part, this was due to everyone being where they were supposed to be, and having the documents they were supposed to, and just being wonderful overall. But more than that, it was the attitude of the people. They have a saying there, you might have heard of it:  Hakuna Matata. If, like me, you thought this was a fun phrase created for the Lion King, you are mistaken. I noticed it particularly in Kenya, but in Tanzania some too. Basically, it means (very loosely translated) 'Everything is fine." Or perhaps "Everything will work out". And they mean it. It's not a brush off. It's not the "calm down, relax" that us with anxiety get thrown at us so often. It's truly their outlook. If there was a concern or a mix up or a confusion, they took care of it. If you weren't feeling well, they took care of you as best they could. If you had a question, they answered it. If you needed something, they helped.  And more off, you knew they would. For someone that battles crippling anticipatory anxiety (i.e. worrying about what could or might happen), this made a world of difference. I didn't feel like I was out there struggling on my own, hoping for the best option but knowing that achieving it would take it's toll on my health, leaving me exhausted and drained at best. A while back, I wrote a blog in which I asked people to stop telling me it would be ok, when they couldn't actually do anything to guarantee that it would be ok.  But here, they actually did make it OK. They could do something about it.  I could actually relax. And it felt magical.

When you're out there in the expanses of the plains, among the animals, something incredible happens - you realize how small you are. You watch these creatures who instinctively know how to live their whole lives and you think, "Wow, I really don't have my shit together." This little gazelle is sitting ten feet from a lion - it's greatest predator - but knows that because it's the wet season it can easily outrun the lion, who does better in the dry plains. The lion knows this too, and for that reason, knows there's no point in him going after the gazelle. So there they sit nearby harmoniously. These animals know exactly how other animals will react at exactly the time of year, and I can't figure out which new back splash will best match my new cabinets in my condo. It makes you want to get your shit together. It makes you want to be part of that something bigger. Not the life cycles of animals on the Serengeti, per se, but just to be doing something that truly makes a difference, that matters on a bigger scale. I'm not sure how that all connects, but it seems to, at least in my brain. The expanses of the planes and the animals somehow get into your blood (not literally, hopefully!) and you want your life to feel more expansive too. At least I do.

So I came back with some affirmation of my efforts in mental health and chronic illness advocacy. It helped me to feel that my goals in this arena are well founded, and it motivated me to push forward, even when I doubt myself. And of course, as it goes with chronic illness and mental health, some days are drastically different than others. But at least it's a start. And it was a hell of a great way to get there. 

Monday, March 13, 2017

National Napping Day

Happy National Napping Day! Let me tell you, this is one "holiday" I can get behind. When you have a chronic illness, a nap often is more than a luxury - it's a necessity. Whether it's the condition itself (such as my MECFS, which actually has the word fatigue in the name of the disorder), the lack of energy from your disorder, or a side effect of medication or treatment, chronic illness often leaves you exhausted. Physically, emotionally, mentally.

So many days, I wake up with plans - I'm going to get this done and that done, these chores and those tasks. Then, I get home mid-day from my part time job, and I just physically cannot do it. Not that I don't want to do it, but I cannot. Sometimes, it's physical exhaustion, plain and simple. my MECFS is flaring up and it hurts to move. Or my depression is so bad that I physically am unable to do things - it feels like there's a giant weight pushing down on me, like my legs and arms are made of lead. (If you think that depression is "all in our heads", think again - there are real physical symptoms). Other times, I'm emotionally and mentally so drained that I might, at best, possibly go through the motions without actually being able to focus. Which means I can maybe do mindless tasks, but anything requiring brain power is off limits.

It's frustrating, to say the least. Especially when you own your own business, and are trying to build up a nonprofit project.  When you're self-employed, unless you're doing so well that you have tons of people working under you and business funds itself (and you and your employees) easily all of the time, a lot of the success is determined by your motivation, inspiration, and action each and every day. When you lose a day or two or five due to illness, it really takes its toll. Not to mention the number it does to your confidence and self-esteem.

And then there's social life. It's kind of rough when a good friend wants to spend time and you have to say "Well, I really need to nap instead."  It's tough to miss gatherings and time with those close to us. It's difficult to have to turn down or cancel plans because you need to rest. But it's part of chronic illness, and one of the many things over time that we learn to accept.

Finally, there's possibly the most frustrating piece of the puzzle - many times, the naps don't help. You take them because you truly are drained beyond belief, and it's the only thing you can do. You are legitimately tired. So tired that you think, "this time, it will help."  But ultimately, you wake still exhausted. Day after day, nap after nap. No matter how early you go to bed or how many days you take a nap. And sometimes you think, "Maybe I should just force myself to get through it. Maybe if I make myself work on that project or exercise (which can help, in moderation and small doses) or go out with friends, I'll be ok." So you try. But it doesn't work. You only feel worse, and you wonder why you tried in the first place. It's demoralizing at times.

But today, we get with reckless abandon! After all, it's a national day dedicated to just that. So here's to all of my fellow spoonies, for whom national napping day, if you actually get to "participate", is like Christmas (insert holiday you really like where you're given gifts). Not only can we nap without feeling bad about it, but we've paved the way for doing so!

Thursday, March 9, 2017

The End of an Era - Celebrating A Life

I had another post planned for today, but I had to change it. I found out this morning that my Great-Aunt passed away. It was not particularly a surprise. She was the last of my grandmother's siblings alive, and while I do not know her exact age, I'd say she was probably around 90 and been sick for some time. She was, in a way, the end of an era. My Aunt Alice, widow of my Uncle Charlie (Grandma's brother), is still alive. But Aunt Clara was the last Albanese sibling. She was the last who knew my Grandma growing up, who lived in my Great Grandparents' house, where my mom was born. The last who knew the family recipes that, love or hate them, I associate with family holidays of my youth.

For reasons that I won't go into here, I hadn't seen my Aunt Clara since my grandmother's funeral in 2008. It was not because we didn't want to see her - she was sick and due to circumstances, unable to see anyone. So I can't say I have recent memories with her. She lived in Buffalo, NY, as does the majority of my family on my mom's side, so she wasn't right around the corner. But as children, until about the age of 16, we went to Buffalo every single holiday. Thanksgiving, Christmas, New Years, Easter, and at least one of the summer holidays. We spent a lot of time, those days, with Aunt Clara. Her generation always seemed impossibly old, being the eldest generation at the gatherings, but thinking about it as an adult, she was probably in her early 50s, if that.

Aunt Clara was my the closest sister in age to my grandmother, and her best friend. They did everything together. She was the sibling that we, as kids, spent the most time with on our visits. I honestly can't remember a holiday celebration without her.

As my family tends to do, instead of mourning a death, we celebrate a life. Often, with humor, or at least light-heartedness. It seems the best way to remember a person, especially one who suffered so at the end of their life - I don't think anyone wants to be remembered old and sick and suffering. And so, here are some of my most memorable Aunt Clara experiences and stories.

  • Aunt Clara was the world's WORST cook. I mean the absolute worst. She would substitute ingredients simply because they looked alike. No sugar? It's ok, there was salt for that! Literally. We used to all spend time at a house on a lake (I should know the name of it but I cannot) and on one occasion, against our better judgement, we let her make dinner - she'd chosen hamburgers, which seemed a pretty safe bet (I was about 8 then, so still ate some meat). No sooner did we eat, then every single one of us ran out in the bushes to get sick. Every. One. She tried so hard and we didn't want to hurt her feelings, so we just took turns vomiting in the bushes and trying to distract her so that she didn't notice. 
  • She always clearly dyed her hair, but for a while, she had this really bad reddish orange color. She was so sweet that nobody had the heart to tell her it looked terrible, but it was a badly kept family joke. 
  • Her house was, for some reason, always a mystery. It was messy beyond belief - I remember it taking effort to get in the door. But she always invited us over and dutifully, we went. I think she had some cats - I associate her house with cats, but I may be wrong. There was also something weird about the bathroom. To this day, I couldn't tell you what it was, but like her cooking and dye job, it was just something known in the family. "If you have to go to Aunt Clara's, make a pit stop before hand, because you do not go in the bathroom." I don't think it was filthy, I think it was just some place you didn't go. 
  • Of course, there's that family infamous cake-baking story. My Grandma and Aunt Clara decided to bake a cake for a special occasion (I believe, but I don't recall the occasion). The cake called for egg yokes.  This was in their younger days, and they were not wealthy, so they didn't want to waste anything.  So "naturally", after they'd separated the yokes out, they forced themselves to gag down the raw egg whites. They simply couldn't toss them. Several steps later in the recipe, they realized it now called for them to add in the whites.
  • Last but not least, there was the time that Aunt Clara and Grandma visited England, got sick on a bus ride, and then, being too embarrassed to say anything, stashed their vomit bags in the bushes outside of Buckingham Palace while everyone was busy watching the Changing of the Guard.

All joking aside, though, Aunt Clara was the kindest person. When I think of her, I picture her the way she was when I was about 10, with smiling eyes, badly dyed hair, pink lipstick (also a bad idea), and the voice that my grandmother and her two sisters shared - they sounded almost identical, or at least they do now in my head. She always seemed so gentle to me, almost frail, but she was not. I picture her in the kitchen in my Grandma's old house, where we all gathered each and every holiday. I do not picture her old and sick. That is not how I will remember her. Instead, I will chuckle about the horrendous beach house dinner episode, the trip to London, the cake, and the mysterious bathroom that I doubt we'll ever figure out now. These are what made her, her. And they are cherished. Rest in Peace, Aunt. You were the last of the four siblings, and you are now all together again. Perhaps they'll finally teach you to cook. 

Aunt Clara, Grandma (Lena), Aunt Lucy, and Uncle Charlie in their youth. 

Monday, February 13, 2017

Unusual Things That Come Naturally To Chronic Illness Sufferers

Let me clarify: by unusual I don't mean it in a derogatory manner. I mean "things that feel completely common to us, yet that those without chronic illness probably don't do/think/experience". And I mean that in the best way, because knowing that there are others out there that do the same as I do, that may have to do the same as I do because of illness, is wonderful. It makes me feel less alone, less of an anomaly. And it's only when I step outside of my spoonie community that I realize "oh, not everyone does/has to do this." And I remember why I love my spoonie community so much - because they get it.

1.  We know the "nicknames", abbreviations, and details on illnesses that others (outside of the medical field) have never heard of. This also goes for every spoonie/chronic illness chat hashtag.

2. We have ready answers for our favorite medication trackers/tools/organizers (either electronic or old fashioned pill cases).

3. We actively post photos where we look our worst, because it shows others what our symptoms look like, or how we look during a flareup.

4. We rate how we're feeling for the day in spoons.

5. We choose food according to how it helps us digest our medication. (Mini cheeses are great for mid-day meds dose, you guys!).

6. We choose food according to how badly it affects our illnesses.

7. A nap is not a luxury; it's an essential.

8. We have to create a plan to store up energy for important events, and plan recoup time to replenish.

9. We understand that grocery shopping or running errands for an hour is a big outing. And cleaning the house (when we can) requires reserve storage.

10. Trying to figure out how to take sick days from work is confusing. Every day is a sick day, so... maybe we should do the reverse and take the day when we feel slightly less sick. This way we can actually enjoy a "good" day!

Have more? I'd love to hear them!

Tuesday, February 7, 2017

Stop Telling Me It Will Be Ok

Clarification: This is not a political post. I've seen a lot of political posts on social media with this type of tagline, so I just want to clarify. It's about mental health, through and through.

There's something I think people don't fully understand about anxiety. In fact, I think that unless you've battled it, it's near impossible to understand, because it's what happens inside of the brain when anxiety takes the reigns. And without anxiety, you don't experience it.  That "it" is that when you battle anxiety, you can't not worry. And trying to not worry makes you feel worse. Because then, you start to worry about worrying. You end up chastising yourself for an illness you can't control.  It doesn't matter what the topic is, or how trivial it may seem to others. It doesn't matter how unlikely it is that what you're anxious about will actually occur.  And here's the piece that I think can be most frustrating to those we're close to, those who witness this anxiety: no amount of reassurance will make us feel otherwise. In fact, it often makes things worse.

Here's the thing: unless you are, somehow, the person who can actually make a situation OK, you're just guessing.  You may think it will be OK. Or you may mean that even if the worst happens in a given scenario, eventually, the person will get back on their feet. Or that what they're worried won't be that bad. But you're looking at it from your perspective, not from what's going on inside their anxious mind. You can, in no way, guarantee that what happens inside their head will be OK. You cannot control how their anxiety or depression or panic acts. You can't insure that they won't feel like they can't breathe, like their brain is going to explore or their body break down. You probably can't control their external circumstances (unless your specific actions are what they're worried about in the first place and then hell, do something about it!), and you certainly can't control the internal ones. So really, you don't know that it's going to be OK - not from their perspective and experiences, anyway. And yet you promise it will be, and want us to believe you and act accordingly. You want us to control something in our brain that we cannot, simply because you tell us it will be OK.

Continually trying to insist it'll be OK only alienates us. It makes us feel like you don't understand us, or how we're experiencing the situation. It invalidates, in a way, our worry.  Especially when you keep insisting on it, even when we tell you that we know the emotions we're in for, and they are not OK.  Basically, you're telling us that you know our body and brain better than we do. That, without being inside of our head, you know how it will react. You may not mean it this way, but it's how it comes across to use nonetheless.  In a way, I almost wish that you could have a glimpse of my worry - that you could spend even a second or two inside my head. If you understnad what the worry felt like, I wouldn't feel so isolated in my feelings, so wrong or broken for being worried.

Now, there may be times when you can help to control at least the external circumstances. If we're anxious about money because we're having trouble paying the bills and you offer to help, you actually can make the situation better. But most of the time, this isn't the case. There's rarely something you can do, right at this moment, to improve our worry. Partly, this is because much of our worry is about the future - I won't be able to do that, this will happen, that will occur. And because you can't control the future, you literally cannot prove to us that these things we are worried about are not a problem.

So what can you do to help? Stop making our worries feel trivial. Stop trying to convince us of things you have no actual proof of. Stop trying to pretend you know what will be going on inside our heads, which is where the anxiety lives.  Be there with us. Listen to us without contradicting how we feel or think. Promise us that you will be there, whatever happens. Let us know that we aren't alone, that even if the worst happens (which surely we're anxious about), that we will at least be going through it together. That won't eliminate our anxiety, because it's an illness - and illnesses aren't cured with kind words. But at least it will let us know that you are there, and that you don't think our anxieties silly, and we are not so isolated, misunderstood, and alone. 

Thursday, February 2, 2017

It's Time to Talk (About Mental Health)

Today, February 2nd, is Time to Talk Day. Time to Talk about mental health, that is. As a mental health advocate, that's really every day, but today I thought I'd get back to basics, talking about my mental health, in the form of a questionnaire of sorts.

What's the name of my condition?: (Rapid Cycling) Cyclothymia.

When was I diagnosed?: A month shy of my 30th birthday, but I've had it since birth.

Will I always have it?:  Yes. At least as of now. No cure has been discovered.

Am I always cycling?: No. But there's always the possibility. Many days, I feel quite... un-cycle-y.

What's my chosen course of treatment?:  Therapy approximately once every three to four weeks, oxcarbazepine three times per day, hydroxazine (for anxiety) twice per day with an option for a third time if bad. Let me say that treatment is very individualized, and everyone has to tailor their treatment to what works best for them.

Why do I advocate?: Because there's stigma. Because people are still afraid of saying that they have a mental health condition for fear of repercussion - from their families, from their friends, from their jobs. Nobody should have to fear repercussion from others for having an illness. And because there are still so many myths about mental health that are absolutely untrue, and people need to have factual information to in order educate themselves on the topic. People don't know what they don't know.

What do I want people to know?:

  • 1 in 5 people in the US has a mental health condition. That's 20% of the US population. When you include addictive disorders, that percentage is even higher.  
  • People with mental health conditions are 10 times more likely to be victims of a violent crime than perpetrators. 
  • We are not "crazy", "mental", "insane". We have an illness. Just like someone would have diabetes or asthma or any other chronic illness. 
  • Taking medication doesn't make me a pawn of the medical/pharmaceutical industry. It saves my life, and that of many others. 
  • Anxiety isn't just being stressed; depression is not just being sad; mood cycling isn't just being moody. They are multi-faceted illnesses that are rooted in a physical part of our body - an organ called the brain. These illnesses are not a choice, an attitude, or a lack of gratitude. We would never choose these things if we had the option. 
  • My illness is, and never will be, a crutch. If I say I cannot do something - physically, mentally, emotionally, because my illness affects all three -  I cannot. Just like I cannot know what it feels like to not be able to breathe due to asthma, since I don't have it, those without mental health conditions don't know what it's like inside my brain. 
  • Our illnesses are not adjectives to be thrown around. Someone who changes their mind isn't "acting bipolar"; needing to double check something isn't "so OCD"; you're ADD isn't acting up today, unless you actually have ADD and it's acting up today; you're not "so depressed because you have nothing to wear to the party" unless you actually battle depression and this is somehow a trigger. You wouldn't say someone was acting "so cancerous". So don't use mental health this way either. 
  • Suicide is the 10th leading cause of death in the US. There are approximately 121 suicides in the US every day (over 44,000 every year in the US). For every suicide completed, 25 attempt. 
  • Mental health conditions are not weaknesses, they are illnesses. Illnesses that can be fatal. Suicide is not weak or selfish, it is (at least when related to mental health), a battle with an illness that's been lost. 
  • If you struggle with mental health, you are not alone, even though it often feels like it. There are so many of us that understand. Please, reach out. To me personally if you would like. 
  • I am not ashamed of having a mental health condition, and I will never let anyone make me feel that way. If you, too, battle mental health and need some help in talking about it, reach out. To me, or to anyone else who advocates and is open to it.  
It is time to talk about mental health. Time to stop the stigma. Time to change. I am happy to answer any questions anyone has about mental health, my condition or personal experiences, or becoming an advocate.  

                                     Displaying IMG_9931.JPG

Wednesday, February 1, 2017

Surviving In the World Of Anger When You Physically Absorb Feelings From Others

The world is angry right now. Or at least it seems that way as an American. People are either angry at the government, or they're angry at the people who are angry at the government. And I get it, trust me. While I won't get political much on here, suffice it to say that without insurance, my medications would be $1300 to $1600 per month. And that's just meds. So yes, I get the anger. I get the frustration. I have a stake in this, and I don't have my head in the sand. But the anger. It's like it's become a new weather pattern.

"Well, today, we'll see a 100 percent chance of extreme anger coming from all directions, a 75 percent chance of a nasty comeback and ensuing row in the comments section, and 30 percent chance of years of friendship being destroyed. Oh, and there's a minor chance of a rain shower this afternoon, so if you weren't already bringing your umbrella to protect you from the ensuing shit storm, may want to throw that in your bag." 

And I get it. But I am doing my utmost not to be consumed by it.  Not the issues, but the anger itself. As a person with strong HSP (highly sensitive person) and empath qualities (where you literally feel the emotions that other people are feeling), as well as decently severe anxiety and depression, the world is seems physically painful to me these days. I can't explain exactly how it feels, other than to say that it's almost like I absorb the energy and emotions of others, like I'm actually experiencing part of what they're experiencing. Not "I feel terrible for them and this is awful" but "I can physically feel their pain". I guess the best example I can give is, think of a person (or pet or being) that you're really passionate about. Think of the joy you see at your child accomplishing some goal that they've been working so hard for against all odds - how it can make you cry with happiness. Or the pain of seeing them so defeated or ill, how it can make you break down with sadness and grief. Or, for dog lovers, how it would feel to see a suffering, starved, innocent dog abandoned,  helpless. That emotion, that's how it feels to me. About everything. Not just my child, or my dog, or a homeless abandoned suffering dog. About everything, including other people's feelings. They're angry or upset about something? I physically feel it. They're happy? Tears of joy.

It's so much that I literally cry almost every morning, and half the time I don't know what it's about. It's just so emotional it's overwhelming. On occasion, it's happy and sad tears simultaneously. I'll hear or see something that's upsetting someone and burst into tears. Then I'll hear a song that makes me remember a great time with someone close and burst into tears. And none of this actually counts what's going on with me. This is all before you factor in my mood cycling and my anxiety, the anxiety and fear of life events or things going on in the world, or the general ups and downs of every day life. This is just from other people.

So how do I deal with it? Well, I wish I could say "better than I am". Right now, my tactics consist of the following:

  • Try to quietly do may part for those causes I'm passionate about - whether it's donating, taking an action, or supporting those who do/can. 
  • Help in ways that do not further fuel my anxiety and/or depression. I don't have to stand up and give a one-on-one speech, or call and personally chastise my local congressman or whoever it is. I can send emails. I can join peaceful marches and protests, I can sign petitions, advocate online, volunteer with a local chapter/organization helping them operate day to day.  Things like phone calls standing up to authorities aren't just something I don't enjoy (like a lot of people). They're something that sends me into severe anxiety attacks. So I don't do it. Because me gasping for breath while the room spins won't actually help anyone. But there are other ways that I could. 
  • Focus on my advocacy efforts, and how I can help others through them. Just because there are massive changes going on doesn't mean that helping an individual with their mental health or chronic illness is meaningless. In fact, to that person, I hope it's quite meaningful, and that means a lot to me. 
  • Focus on love and caring and kindness - to my fiance, family, friends, Grace, as well as offering caring and kindness to those who I may not know well/at all, and who need it. Like my spoonie community, for instance. I can't stop the angry - sometimes even within myself - and people, myself included, have every right to be angry. But I can try with everything I have not to let that anger completely displace love. 
  • Practice increased self-care. This mean taking additional time for things like yoga, reading, writing, time with loved ones, me time. Things that help my anxiety and depression and overall health and well-being.
These aren't, by any means, cure-alls. I still feel like a giant sponge soaked with the world's emotions. I still feel my own strongly. I still battle mood cycling and anxiety, because quite frankly those are their own entities, that were here long before the current situation and will be here regardless of the state of the world in the future. Yes, they're influenced by it, but they're not caused by it. That would be genetics at play. 

And I am in no way saying that those who are angry and protesting and calling their congressmen and meeting with their representatives and are mad as hell and not going to take it anymore should not be doing and feeling that way. I envy you, honestly. Because I'm angry too and I wish I could do that without becoming a ball of wreckage. To be frank, it's nice to see people so passionate again in general, because it felt like for a long time we were robots programmed to stare at our phones and give canned answers like "Busy! Ok. Good, how are you (as we kept walking and didn't wait for a reply)." Though I wish the circumstances under which we regained our passion were different, of course. I hate seeing arguments fester, people's friendships dissolved, families so divided. I simply am expressing what it feels like when you unintentionally absorb this from others, as some of us do, and how I'm working with it. To all of those raising hell out there, I appreciate you. So much more than I can express. You're doing what I cannot without sacrificing my health. And if I'm not healthy I can't help anyone, and so I have to toe the line, and do those things that I can do, hoping to somehow make a difference. 

Tuesday, January 24, 2017

If You Could Spend A Day Inside My Head

If you could spend a day inside my head, you would understand that my anxiety isn't a choice. You would feel constant assault of worry that feels like it's about to eat me alive.

If you could spend a day inside my head, you'd know how isolating that worry feels, when it seems like you're the only one who can't think the way that others are. When everyone else is promising it will be OK, but until you actually see that, unless they can actually make it so, you can't believe them. Your brain will not allow it.

If you could spend a day inside my head, you'd understand that it feels like you have raw nerves on the outside of your body. Nerves that with the slightest breeze or brush could become excruciatingly painful physically, mentally emotionally.

If you could spend a day inside my head, you'd understand that even if something seems trivial to you, it might seem vital to me, and that nothing I can do will change that. You'd understand that trying to change it only makes me feel worse, only isolates me more for feeling so misunderstood.

If you could spend a day inside my head, you'd understand how terrifying grey areas are. How knowing the worst is better than not knowing, even with the possibility of the best still out there.

If you could spend a day inside my head, you'd know that it's not an attitude. That I cannot just think more positively or be more grateful. You'd realize how painful it is to feel this way, how badly I wish I did not.

If you could spend a day inside my head, you'd understand that I can't stop it from spinning. That there are times when 1,000 stimuli are firing at me at once, even everything around me looks peacful. You'd understand that it feels like you're under attack from your surroundings.

If you could spend a day inside my head, you'd understand that I can't wait to have that conversation or do that task or know that answer. That it's slowly tearing me apart from the inside out. That either I break out of it, or I break down, and I cannot break out of it without taking this action.

If you could spend a day inside my head, you'd know that none of this is a choice. That I never asked for this and I'd give anything not to put myself through this. Not to put you through this as a result.

But you cannot spend a day inside my head. So I ask you to believe me when I tell you how I feel, and to acknowledge that because you cannot understand, cannot experience it, doesn't mean it isn't real.  

Wednesday, January 18, 2017

The Unexpected Symptoms of Chronic Fatigue

I've been writing more about my M.E./CFS (formerly known as Chronic Fatigue Syndrome, or CFS for short). And quite frankly that's because it's been kicking my ass lately. Well, every part of me really. I'm so exhausted that I'm having to miss plans that I normally would make every effort to attend - and really I am making every effort. I'm just too drained. The last two weeks I've missed my weekly yoga class to take a nap. This past weekend I ran an hour of errands and came home feeling like I ran a marathon. Walking my dog causes me to feel almost winded. And that's when she's actually being well-behaved!

In addition to the obvious fatigue that comes with M.E./CFS, there are other symptoms. Random joint and body pain. Numbness and tingling in my limbs. The other day my feet fell asleep while walking and my hands have fallen asleep while typing. It's not the first time for either of these. There's also the dizziness, though because I suffer from vertigo, and am borderline hypoglycemic and hyponatremic, that may nor may not be solely attributed to the M.E./CFS. And of course, the brain fog. Though again, because of my depression, this can be difficult to discern. At times, I'm not sure if I can't think straight because of my depression or because of M.E./CFS brain fog. It could be a combination. There's also the swollen glands (of some sort) under my arms, which makes me walk around like the Michelin Man, with my arms not quite being down at my sides.

Unfortunately, suggestions for making M.E./CFS more manageable include things like exercising. Which is great, when you have the energy to do so. Yesterday, I dragged myself through a 25 minute workout at home, which took all I had. Perhaps I shouldn't have made myself, but I wanted to see if it did help at all. Verdict:  I'm still as exhausted. Other suggestions include:  Therapy. Check. Already there for my cyclothymia, anxiety, and that goodness.  Depression Medication: Can't do because of my rapid cycling, but I do have mood stabilizers, which I think covers that basis. So, check. Regular sleep habits (even though sleep doesn't really refresh me much of the time): Big old negativo. My mood cycles make it tough to sleep. Anxiety leads to morning. My job involves shift work that's dependent on event times, so my start time/wake time varies.

It's frustrating as hell. I probably need to go to the doctor for a full blood workup and general check, but currently my primary doctor is my therapist, whose realm does not include things like checking my arm pits for swollen glands (and I'd be worried if she did). So to be honest, I haven't had anyone actually manage my M.E. CFS in years. And perhaps I should, at least loosely.

So if you notice me zoning out or dosing off or other generally weird (weirder than normal) behavior such as the ones above, this is probably why. I apologize in advance if I can't make plans, or if I have to leave early, or if I'm just generally antisocial (also more than normal). I dislike it too, greatly. I hope to be back to you all soon. 

Wednesday, January 11, 2017

When A Giver Has Given All They Can

I'm a giver. I think that's true of a lot of us with mental health conditions. We seem to be a particularly empathetic, sympathetic, and understanding bunch. We know what it's like to not be understood, to be identified as a label instead of a person, and we don't want others to feel so un-cared for as we have. We want to put ourselves in other people's shoes often, because we wish more people would put themselves in ours before judging. We don't want to ask for what we're not willing to give, and so we give. And we give, and we give, and we give.

But there's a problem with being a giver. And that problem is that eventually, unless you're one of those people who will be elevated to sainthood soon after your life has ended, you run out. One day, the giving well is just gone. And it might be someone asking you for something big, or even something tiny. But it doesn't matter. It isn't about what they're asking, not really. It's that you physically, mentally, emotionally have nothing left to give. For me at least, this is especially true if it's one or a few people that have been bleeding your giving supply. Because the problem with being a giver is that those who take so often don't tend to replenish you equally. They promise they will one day, but they can't just now. Or maybe they don't even realize how much they're asking you to give. I'll at least hand them that. Maybe people don't understand that just because you're willing to give, just because it comes naturally to you, just because you're always so prepared to put others first (often because of your lack of self-esteem or self-worth) doesn't mean that it takes no toll. They may not understand how much it still drains you. They may not see that you need to secret yourself away somewhere after a particularly rough bout of giving to replenish for a while. They may not see that if you have to give again and again in a short period of time, you don't get that time to replenish, and that at some point, you're stealing from yourself to give to them.  You're using up your mental, emotional, physical energy so that you can offer it to them, and that when it comes to yourself, you have nothing left. And when illness already has you living with limited energy, this is no small task.

What people don't understand, when they ask you to give and you finally can't, is that it's not about that one issue. It's simply that one request that puts you over the edge. Think about it this way: Say a friend asks to run a 5K with them. You think, "Yeah that's no problem, I can run a three miles or so." But part way through the run, they tell you it's a 10K. You think, "Wow that's rough, but I think I can manage the energy."  Then, as you're nearing the 10K point, thinking, "Thank god. This was way more than I bargained for," they say tell you it's a half marathon. Your friend really wants you to finish the run with them so you grit your teeth, fight through the pain, and keep going. And as you're nearing mile 13, exhausted and hurting, thinking "Holy crap I did it!" they say, "Actually, it's a marathon."  So you run and run this race that you didn't expect on energy you really don't have. And at mile 25.2, you just run out of steam. Flat. Done. Completely. You feel like if you take another step you will physically, mentally, and emotionally collapse. And your friend looks at you and says, "I thought you were a runner? You can't even run a mile?  That's all you have to do."  But clearly, they haven't asked you to run a mile. They've asked you to run a marathon, when what you thought you were agreeing to was a 5K. You can run a mile. You just can't run another mile. You've made it 25.2 and have given it all you have but you have no more. Now, sure, you could maybe walk it, limping in hoping you don't collapse on the finish line. Hell, you could probably get on your hands and knees and crawl it. But how much damage might you do? What if you don't make it? What if because you've pushed yourself way past the limit your illnesses will allow, it takes you months to recover. That's right, months. And besides, the point isn't that you may be able to crawl and gasp your way into the finish line possibly. The point is, your friend thinks this is about running a mile and that you're not willing to run a mile for them. And no matter how much you say, "I can run a mile! Just not after 25.2 of them!", they don't understand.  Because they really, really want you to finish this marathon with them. And they can not understand why you can't run one mile. After all, you said you would run this race with them! Why are you going back on your word now?

That's how it feels to be a giver, especially a giver with a mental health condition and a chronic illness. You give and you give and you give. You give until you finally drop. Like a stone. At least mentally and emotionally, and sometimes physically. And when you do, nobody understands. Because being a giver is just who you are. You always give. And because in a vacuum, they've just asked you to give this one thing that they think shouldn't be that hard for you. But first of all, we don't live in a vacuum. We live in the reality of all the other things you gave first before this one thing came along. Secondly, it's unfair to judge what "should" be easy or hard for someone else to give. My brain (and sometimes body, because of ME/CFS) don't work the way others' do all the time. So maybe, for whatever reason, what seems like a small deal to you is a big deal to me and I just do not have the mental or physical or emotional energy to do this one more thing, to give this one more time.

So next time you ask someone to give something they just can't - even if it's something you didn't think would be a point of contention, that would cause them any difficulty - ask why. Then listen. Carefully. Without judgement and without trying to get your point across.  Then try to understand. Try really hard. Just like we do every time we push ourselves past what is healthy for us because of something that's important for you. But maybe giving this one last bit will dry them out. Maybe they can do it technically, but it requires them to pull from their few remaining stores, again, and give them to you.  And is that really worth it to you? Maybe. Only you can make that decision. Just try not to do it in a vacuum.

Thursday, January 5, 2017

Illness Fatigue In Our Busy-Centered World

When you battle chronic illness, you most likely battle exhaustion and fatigue. Often. When you battle chronic fatigue syndrome (now known as ME/CFS) it's guaranteed that you do. Because, you know, it has fatigue in the name. And when you pile on depression, anxiety, and mood cycling (the ups and downs exhaust like you wouldn't believe) it basically feels like the energy has physically been syphoned out of your body - which I'm sure my fellow spoonies experience with their own illnesses.  Of course, this in and of itself is an issue, since it can make every day tasks like working, walking the dog, cooking dinner, and cleaning the house feel like you're going through them with a body full of lead.  But wait, there's more.

Our society loves to be busy. We don't say that of course - in fact, we mask it under complaints of how busy we are - but we do. It's become an automatic response for so many. "How are you doing?" And the answer is always  "Busy!" Often, I don't think they know what they're busy with. It's replaced "Good, how are you" as the human auto-reply. People wear their hectic schedules, lack of sleep, lack of meals like a badge of honor. "I haven't slept more than two hours, I missed breakfast and lunch every day this week, and I haven't had time to pee all day!" Like giving yourself a bladder infection is something to be proud of. But for some reason, this makes everyone "ooo" and "ahhh" time and again.

So when you have an illness that makes you feel like you have skipped two meals each day and haven't slept more than two hours a night, even when you have, it is tough to "keep up". Here's everyone being too busy to pee, and here's me trying to muster up the energy to get off the couch and walk the 15 feet to the bathroom to pee. And it makes me feel like shit (pun totally intended). Because there's that tiny part of me that for some ridiculous reason wants to be too busy to pee. Because I want to have the energy to be that busy. I want to feel like I have the strength to make my mark on the world. I want to not be so fatigued that even when I'm most inspired I can't will myself to have the energy.  I want to stop giving up when I hit even a tiny bump because I feel physically and mentally too drained to push through it.

Instead, I get home from my part time job at 1:30, 2:00, 2:30PM, and I sit on the couch or at the desk trying earnestly to find the energy to do more. I want so badly to have a burst of mental and physical awake-ness. I feel like, "If I could just do this enough, push myself through it, I could get the ball rolling on this project, and maybe over time, I could grow it and it would become successful. If I could just force myself, push myself harder, I could fulfill my dreams." But I sit there with my body and brain feeling like they're turning to jello and finally say, "I can't.". Despite the fact that I know it's illness, I still hate it. I think back to my early 20s, when I worked full time and got my Master's at night and did a correspondence program in my "free time".  I want so badly to have that version of me back, or at least the energy that this version of me had (I rather like the wisdom and decision making of the 30-something me better). And I wonder how I managed it - I wasn't diagnosed then, but I still battled my illnesses, I just didn't realize all of them. It makes me question myself. Why can't I do it now?  Even though I know the answer, sometimes I often don't want to accept it. Especially when I look at others who are also ill (often more ill than myself), but who have managed to make an impact, to grow their projects and their advocacy efforts, to get to where I want to be. And I start blaming myself - if they can do it, why can't I? There must be something wrong with me. I must not be trying hard enough, or maybe just not capable enough. But especially during a time of depression, it's easy to blame myself, and to allow that to drag me down even further.

And when you add this into a society that shames people who aren't running around like a chicken with their head cut off, calling them lazy and complaining how they aren't pulling their weight, so to speak, it makes it even worse. Because now society is trying to make me feel guilty for being ill, for wanting so badly to do the things I used to but no longer am able. And all of this combined is so frustrating I want to scream. But often I don't even have the energy for that. 

Monday, January 2, 2017

Starting the New Year Off Right

Happy New Year! As we ring in the new year, I have had a lot to think about. 2017 looks to offer exciting changes and growth for me. More on that later. I promise. Seriously.  Soon. But back to my "thinking'.  I'm a part of numerous organizations, and each year, whether it's the transitioning of the calendar year, or passing the baton from one leader to the next, a theme is chosen.  That theme is designed to inspire and motivate the decisions and actions of the leader, as well as the rest of the organization, throughout the year.

As you probably know by now, I don't believe in resolutions. I have made a few goals to help me focus on my mental health more this year, which I'm posting on my Instagram each day this week. But I also wanted to have a focus for my life as a whole - which of course, mental health is a huge part of, admittedly.  Still, while it's an important focus, I don't want it to be the sole focus. So I wondered, "What if I created a theme for my year, as organizations do?" I thought about my goals for mental health, my potential career goals, my love of helping others, and the kind of person that I want to be, and how I could incorporate all of this, and I came up with a theme.

Make everyone feel as loved and as special as possible this year. 

And there's a key component here. Everyone means everyone.  Including myself. Because of everyone I might slack on making feel special from time to time, I do so the most with myself. And by making sure I credit myself with my own worth, I am better able to serve others. Because it's a self fulfilling prophecy - if you think of yourself as unimportant and un-special, you often don't feel you can influence others, and you give up. But I'm not self-serving and I can't focus only on me (it's just not who I am), so this is just a part - just a piece that I have to make sure not to overlook.

So how do I plan to follow this theme? There are plenty of ways.  Often, it's the littlest things that are really the biggest things.  Some examples:

  • Sending (or giving if nearby and I see them often) actual birthday/special occasion cards. Not the kind that involve a Facebook post or a link to click on. The kind with an envelope that require paper and pencil to fill out.  Because that takes time and effort. And showing someone that they're worth your time and effort makes them feel special. 
  • Tell people what they mean to me.  One of my closest friends, who sadly passed away all too young in 2015, used to send me texts that said, "Just wanted to to let you know how much I value our friendship." She did this for seemingly no reason at all. Although of course there was a reason - she valued our friendship.  These days, most people seem to need an acute reason to say things like this. Someone helped us get through a bad time, or helped us with a big project, or listened to us vent. And of course, you shouldn't let these go unappreciated.  But how nice would it be to just hear out of the blue and for no specific reason that you mean a lot to someone and they value you? How much could that brighten your day when you're particularly down and feeling bad about yourself?  And so, as a tribute to my friend who I lost so sadly and so suddenly, who always made me feel so special, I vow to do this more in 2017. 
  • Helping friends with their projects, charity events, and more. I have a couple of friends who, no matter what project or charity or whatever it is, go above and beyond. They retweet, repost, volunteer to help out, donate, participate in fundraising events, help me brainstorm, all of the above - every single time. And these aren't friends rolling in dough, with tons of free time on their hands.  They have to squeeze in the time to do these things. They are often strapped for cash themselves, but still manage to donate to my causes. And I need to do more of this. Whether it's a toy drive or a charity walk or a project you're starting that you need me to share on social media. (Caveat: Guys, I love you dearly but if I attended every LulaRoe and makeup and jewelry party I was invited to I'd literally never be at work and couldn't pay my bills, plus I'd have an anxiety attack being in a group of people I don't know, so unless it's for charity I may well decline).  But if you have a cause that you're raising money for or are starting a new business or are gathering toys/books for a toy/book drive or need me to volunteer at a charity event, please, let me know.  I'll do everything I can to help out, even if it's just sharing it on social media or posting about it or helping brainstorm ideas or whatever. 
  • Spread Hope Project. I'll be posting more about this on my blog later, but the idea is that, to start with, I'm going to be taking photos in as many places with as many different people as I can with my Hope shirts (or accessories or signs or whatever I can), to literally Spread Hope, particularly to those battling mental health conditions or chronic illness, but also just in general. There's more to come down the road, but that's the start. In the mean time, you can see some photos on Instagram. And by all means, if you have a destination suggestion or want to be in a pic, let me know!
As I start 2017, I hope to keep this theme of making people feel loved and special in mind when considering my actions and decisions and words.  As I mentioned, I also need to take care of myself, and my health to make sure I can continue to do this. So there may be times I need to decline do to being ill, and I hope those that I love will understand. But I will do my best, even if all I can muster with the few spoons I have for a day is a text or a card or to share your tweet or post in hopes of helping you to promote your efforts. And if there is a way I can make you feel special that I've not mentioned, please, let me know, and I'll do my best. Because after all, it's the people who will be holding your hand at the end, it's how people will remember you as a person, that matters most. Love (familial, platonic, romantic) is everything - the rest is just frosting.