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.

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".

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." 

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. 

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. 

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.

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."