Tuesday, June 27, 2017

To Those People In My Future

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

My illness is for life. 

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

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

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

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

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

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

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

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

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

Tuesday, June 20, 2017

The Pieces of My Illness That You Don't See

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

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

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

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

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

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

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

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

Tuesday, June 13, 2017

I'm Done Being Your Doormat

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

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

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

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

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

Wednesday, June 7, 2017

The Darkness of Emotional Overload

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

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

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

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

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

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

Thursday, May 25, 2017

There Is No Formula For Success

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

There's no actual formula for success. 

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

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

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

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

Wednesday, May 24, 2017

On Those Days When You Just Want To Run Away

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

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

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

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

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

Friday, May 12, 2017

What I Wish You Understood About Chronic Fatigue

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

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

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

Wednesday, May 10, 2017

Today, I Empathized With A Mouse

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

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

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

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

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

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

Sunday, May 7, 2017

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

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

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

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

Is it because you don't know how to? 

Is it because you're afraid of being vulnerable? 

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

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

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

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

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

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

Tuesday, May 2, 2017

Why Mental Health Month Is So Important

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

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

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

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

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

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.  

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