Tuesday, January 24, 2017

If You Could Spend A Day Inside My Head

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

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

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

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

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

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

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

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

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

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

Wednesday, January 18, 2017

The Unexpected Symptoms of Chronic Fatigue

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

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

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

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

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

Wednesday, January 11, 2017

When A Giver Has Given All They Can

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

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

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

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

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

Thursday, January 5, 2017

Illness Fatigue In Our Busy-Centered World

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

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

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

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

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

Monday, January 2, 2017

Starting the New Year Off Right

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

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

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

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

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

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