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.