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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Wednesday, February 1, 2017

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

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

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

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

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

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

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

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

Tuesday, January 24, 2017

If You Could Spend A Day Inside My Head

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

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

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

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

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

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

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

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

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

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

Wednesday, January 18, 2017

The Unexpected Symptoms of Chronic Fatigue

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

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

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

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

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

Wednesday, January 11, 2017

When A Giver Has Given All They Can

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

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

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

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

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