Showing posts with label self care. Show all posts
Showing posts with label self care. Show all posts

Sunday, April 27, 2014

Book Report #HAWMC

My favorite book at this point in my life is: Ownership Spirit by Dennis R. Deaton. This book is incredible. It opens by teaching the Owner/Victim Choice. continues by explaining Our Essence, that there is a difference between who we are and the choices we make. "As human beings, we each have a body; but we are not our bodies. We have emotions, but we are not our emotions. And, we have feelings, but we are not our feelings." This book is brilliant. Check out this bit in the chapter "The Thinker of Thoughts":

When we encounter setbacks or loss, we can learn to resist our almost reflexive Victim thoughts like, "Oh, no; here we go again," or, "Why does stuff like this always happen to me?" We can learn to open up the mental interpretative gap and enumerate options [read: we can detach and list our options]. ...When my knee-jerk reaction takes over and I sense myself turning to the "why me" laments... I say to myself, "Stop. What are your options here, Dennis?" The "stop" breaks the negative monologue. The follow-up question... triggers a constructive line of questioning.
[emphasis mine]

I love this bool. I love it because not only is it a call to arms to get up and take responsibility for our lives, but it recognizes that this stuff is difficult to do, and that tough decisions need to be made every step of the way to see the success we want. And this book teaches how to deal with ourselves and our own insecurities that will crop up along the way.

We can either appreciate what we have and build on it, or take it for granted and lose it. "Exercising Tough-Minded Ownership does not guarantee that every poignantly challenging experience will turn out to our liking. But, it does guarantee the way we will experience the [event] and it does determine the degree of strength we will leverage during those times." There are no Polly-Anna's here. This is realistic optimism at its best.

Along those same lines, everyone should watch this TED talk. It talks about how important it is to hold on to who we are no matter what happens. If you haven't tried this exercise before, do so now. Write out 20 sentences on a piece of paper starting with the words "I am..." and finish that sentence. Force yourself to only write positive qualities or qualities you are proud of in yourself. Do not finish any of those sentences negatively. This will help you identify the qualities you find important in yourself. And it will help you remember who you are, no matter what happens to you or the choices you're forced to make. Because as this video shows, both great success and great failure are as equally disorienting to the psyche. It's easy to get lost out there.

This great talk is called, "Success, Failure, and the Drive to Keep Creating":

[ted id=1983]

If you haven't heard of The Ownership Spirit, go check it out. And remember to always come home. I am your host, Pamela Curtis. I was not paid in any way for these endorsements. You can pick up your copy of Ownership Spirit through this link to Amazon.


P.S. I passed on Fitness Friday, because I don't really stay fit right now. I do have a word art picture, but I don't have any image software to capture pictures right now due to technical difficulties. I promise I'll get it up soon!

Saturday, April 12, 2014

When You Don't Get What You Need #HAWMC

How can I #ask for what I #want, when I can't get what I #need? That question hit me like a psychological bomb this afternoon. Mornings for me are generally difficult and full of negative thoughts, and I've learned to just ignore my brain until my morning meds have kicked in. That's just safer for everyone. But this though hit me right around noon, long after my better living through chemistry kicked in. This was a thought explosion that required further investigation. Since today is Blogger's Choice, I'm choosing this: How can I ask for what I want, when I can't get what I need?"

Sounds like the line from a Country-Western song about heartache and loss... And to be fair, it is about heartache and loss. Add a line before it about the season, and it becomes a Japanese Haiku: Morning sun turns frost into dew. How can I ask for what I want, When I can't get what I need? It's a question that's more Goth than Amanda Palmer in a Death costume. It just drips with teen-aged angst and insecurity. Only it's coming out of my head at fourty because my friend invited me to sushi.

The thoughs went like this. Oh, cool, sushi! I could totally be frugal and have something delicious. I'd never think of doing this on my own, what a delightful idea! I should think of other frugal ways to spend time with my friends, because I don't invite them over, and I really should. We had such fun when Mike had everyone come over for drinks. I should be more spontaneous like that. I know I used to be... I wonder ...

Here's where I should have stopped. It's as though I were driving on a mountain road, and suddenly a darkness descended. I could see the turn in the road, but it was too late, the thought had too much momentum, I couldn't turn away from the idea that sprung up next. I swerved to avoid it, but to no avail! Over the cliff I went...

I wonder why I don't do that anymore. (Turn now!) I used to do that all the time when I was younger. (Look out! Swerve to miss it!) I wonder why I lost my spontaneousness? (No good! You're over-correcting!) It wouldn't be too hard to clean this place up & invite folks over. (Too late...) But I'm in too much pain to even make lunch. (We told you so...) How can I ask for what I want, when I can't get what I need? Boom.

And suddenly it all made sense why it was so difficult to take time out to care for myself, or to suggest fun activities, or invite people over. It's not that I don't want to do those things, I do! It's not that I don't have a circle of friends to ask, I do! But there's this awful noise coming off this hole, see... And I'm trying to fill up the hole so that we can have some peace & quiet in here again, but the damn thing won't. fill. up! It's maddening... Hey, can you give me a hand? Grab that shovel...

For all the time I spend lost in thought, there are lots of things I would just rather not think about - what I'm going to wear (if I could wear a uniform and just not have to think about matching slacks & blouses), what I'm going to eat (I can seriously eat the same 3 meals for months...I'm doing it right now, in fact), how to wear my hair (out of my face and off my skin - military cut for a girl? Right here). These things, to me, are things that take time away from doing. I'd much rather do stuff. But so much of my time is spent managing this symptom or that flare, that when I get to times when nothing is going wrong---my window for fun---I usually just spend it exhausted, trying to recover from shoveling remedies into that giant hole of need.

It made me realize, not only do I believe I can't ask for the things I want in life, but I'm also VERY angry at my body. Unfortunately, yelling at it means I'm yelling at me. My body, as much as I would like to think my consciousness is separate, is an integral part of who I am. My body *is* doing the best it can. It's just broken! It can't help that it's broken. And I need to forgive it more. Poor thing, it's gone through so much and been pushed so hard when it wasn't getting all it needed...it's done amazingly well to operate under the deficiencies I've dealt with. It's supported my mind, and my ability to see myself through some hairy situations. It deserves more credit that I've given it. And, boy, does it look good for 40!

So step one: Stop getting angry at my body when it's not doing what I want.
Step two: Forgive my body for not allowing me what I want.
Step three: Take care of my body's needs with gratitude.
Step four: Find frugal ways to have more fun with my friends. (I *do* deserve it, and if I'm careful, it *can* be good for me.
Step five: Continue my work to better my health & function.

Even if not all my needs are met, I can have what I want, if I'm clever & careful. The good news? I'm clever. The bad news? I'm also impulsive. I can still be okay with that combination, as long as don't let my "failed attempts" drag me down. I think that can help me get some of my mojo back. But my big fear is always spoiling everyone's time with my health problems. It's happened many times before, and I know it can happen again, suddenly and without warning. I think I can he careful enough to show myself it is possible to have what I want. Time will tell.

I'll keep you posted! ;)

Friday, December 20, 2013

The Grinch Has Nothin' on Chronic Illness

It will happen when dealing with a debilitating chronic illness---your disease will do something that scares you. There's one symptom I know to watch for that means Really Bad Things for me: orthostatic hypotention, a.k.a. blacking out upon standing. It's how I knew my disease had left remission in 2009. It should not be happening now; I'm on corrective medication. That it is happening is Bad News. So rightfully, I'm frightened. Add to this one of my pain meds has quit, with the new one not scheduled to be available until the first of next year and the holidays aren't so jolly.

I have to remind myself to care about the holidays because I know other people care, and bigger still, they can't tell that my indifference to the holidays is because I'm so preoccupied with much bigger issues. I become hyper-focused on daily survival (because that's what it takes) and I lose what month it is. Time becomes a blur---either I'm dealing with symptoms, or dealing with what I had to put off because I was dealing with symptoms. I learned a long time ago in times like these, I have to limit my outings to once every few days... I need at least 2 days to recover from the last 2 hours I left the house. I get about 3 hours of normal activity a day. The rest is in battle with my own body, and it's exhausting! It was just Halloween last week, right?

To cope, I watch a LOT of Netflix. My current escape is anything Anime, as long as it's not about giant robots. The Japanese are very understanding of ignorance, seeing it as an opportunity for giving the gift of education, rather than something to necessarily be ashamed about. I grew up under the rule that if you didn't know, you were ridiculed, so it's a refreshing change of pace. So they use their cartoons to educate kids on manners, how to resolve conflicts, how to deal with bullies, and all without being condescending like those After-School Specials you and I grew up with. And it also reminds me of when I worked at Nintendo of America in Seattle, when I was one of the few people who wasn't bilingual. I remember the sound of Japanese going on around me as business was conducted. I remember how much I struggled to learn phrases like "Thank you for the food, let's eat!" and "Thank you, it was very good'" Those were happy times...

Because I get sucked into that microcosm of surviving moment-to-moment, just trying to claw my way back to normal, I forget what my strength is... that I get back up again. I can't keep up with normal folk, but normal folk don't know how I do what I do.

From my point of view, it's like I'm weathering a storm and just hoping this time, the house doesn't come down around my ears. But that's not what others see. They're not in it, so they don't know that I get scared every time, that I despair every time. All they see is that I go through something like that, and when it's over, I get back up again, like it never happened. They don't understand how it's possible to be so old-hat at suffering that it becomes more of a nuisance and a bore. I know that mystified me when I first got sick. But I saw it happen through the movie Frida, and now I'm finally at that magical place--I'm bored with these health crises. I'm tired of it. It's no longer scary, until it is (and then it's really scary), but that too, has become old and stale.

The difference between then and now is, I actually get tastes of real life between the suffering. If it was all suffering, I don't know how long I'd last. I really don't. But now that I've had moments of life again, all this suffering is just an interruption. I know it's just b.s. I have to push through until I can wake back up to life again. I don't have time to despair when the sun is shining. I don't know how long it's going to last. I've got to take advantage of it, the second I become able to, otherwise I'm wasting very precious time.

Other people see that as strength... my new roommate doesn't understand how I do it. But it's easier than you'd think when you don't really have any other choice. I've been forgotten before and had people stop inviting me out. They thought I'd left. I had... kinda. Not by choice. But how do they know that? Hear it enough, and it sounds like an excuse, no matter how true it is. "Call me in January!" I ask, knowing that no one's memory lasts that long.

So I've decided to start throwing "Still Alive & Kicking!" parties, to let people know when it's cool to start calling again. People want to be polite, but we have no etiquette book on chronic illness, much as I want to write one! lol Seriously, though... we have parties to let people know about weddings, babies, product launches... why not one to let folks know I'm back in the game? And it would be a great way to sweep away those post-trauma blues.

So while my illness may have stolen Thanksgiving, Christmas and New Year's Eve... I'll throw my own festivities just as soon as I'm able. Coming to a Friday Night in 2014! Just you wait & see! I'll be back, baby...

How about you? Ever had a "Get Out of Hospital" party? What did you do? How do you cope when your chronic illness steals holidays from you?

Wednesday, May 1, 2013

It's Official*! I Am No Longer Disabled!!!

Well, folks... I've done the impossible: I have left the the disability rolls! According to Social Security, "less than one-half of one percent of Social Security Disability Insurance (SSDI & SSI) beneficiaries" become 'non-disabled' —42 USC 1320b-19, Section 2(a)(8). Who da man? I'm da man! But this fact hides a difficult truth: my life is still far from normal.

I am amazingly happy, and I am amazingly grateful, but if I said I didn't mind that I'm still sick, that would be a lie. I do mind sometimes. It's difficult to live in the between. I'm caught between a world where healthy people are expected to be able to fulfill certain obligations. But I'm still not healthy, so I often fall short. Sometimes I feel like I've pulled off exactly what I set out to do, I have made this look awesome... but now people expect me to be awesome as well, and that... I'm not so good at. Heck, I struggle to do "normal people things," like stay on top of the laundry, keep up with my bills, etc. I can do work, and a little bit on the weekends, and that's it. I've learned the hard way that I have to include socializing in there to fulfill my psychological needs, otherwise, I end up feeling like I have no friends, crying on the couch with a blanket and a half-gallon of ice cream!

So I have to keep everything in a fine balance, and I have to obey strict, self-imposed rules, otherwise this whole delicate machinery of my life comes crashing down. I've set things up like a Rube Goldberg machine* in order to achieve what I have. The time I put into the doctors allows me access to the medication I need to control my pain, which allows me to work, which allows me to afford the medication. The medication side-effects require that I get 10-12 hours of sleep a night. Work requires that I be there at a certain time. Which means I have a set bedtime in order to get to work on time. That means I also can't blow my sleep schedule on the weekends, otherwise it's too difficult to get back on track for Monday. That limits what I'm allowed to do, and who I'm able to see, on top of the limitations placed on me by my disease.

My disease means that I don't wake up like normal people. Most people have cortisol kick in around 4am to help them start the waking process. My body doesn't do that because my cortisol comes from a pill. The way I wake up is with adrenalin, because my body has realized that I'm not producing cortisol, which means I better wake up, or I could die! So my fight or flight mechanism is what wakes me in the morning. In a friend of mine who has adrenal insufficiency, she wakes in fight mode. She's even woken up kicking and punching. Me, I wake up in a terrified panic. I can't even use an alarm clock, because that freaks me out so bad I would need a pill to calm down. So I wake up to the gentle sounds of talk radio instead, and skip the chill pill. And my disease also means that I must take my pills at a set time in the morning, so that I'm able to function properly for the rest of the day. It's all very complicated and intertwined.

Rube Goldberg Machine
Rube Goldberg Machine

I was still so proud to make that phone call to Social Security. I was also terrified, because this has been my life for the past decade, and I've gotten accustom to many things, but also very proud. I still shake my head sometimes in disbelief. I've done it. It is possible. I've put my life back together again. I'm walking among the working, and I'm one of them. I pay taxes, instead of being on the government doll. I'm a contributing member of society again! I have made my crippling disease manageable. Wow!

So my message to you is, keep trying. If you have to stop and stand back and re-evaluate some things, that's okay. I've taken a year off from my medical struggles to rest and recuperate. Sometimes that's what we need to then charge back in there with all our might. But keep trying: the impossible is possible. It make take years and a strange, wandering route, but you can get there. I did. I'm living proof (pun intended).

Less than one-half of one percent (<0.5%)... but I did it!

Shiny!!!!


[*Update: Nope, didn't make it.]

Tuesday, February 26, 2013

My Secret Triumph

I've read a lot of posts in online communities for people who have chronic health issues. One common complaint I hear is how other people don't understand how hard it is for us to do even the most simple things. In their frustration at their loss of ability, they feel sorry for themselves. I've been there. I've done the moping. I totally understand. Getting a chronic illness sucks! But there's a way to flip that around. There's a way whereby we can look at our struggle over easy daily tasks and we can realize that we are MIGHTY. By the very fact that it is more difficult for us, we can then take pride in doing even the most mundane things. It's all a matter of perspective.

And that's my secret triumph. Most people have to go out and run marathons, or hike a 14,000' mountain to do a great thing. I just have to get the laundry done (now there's a Herculean task!). People don't understand how difficult that can be. Which is fine with me. I can take pride in it myself, knowing that I have been stunningly awesome every time I can get that simple task done. Oh, sure, for them it's easy. But then, they have an easy life without chronic illness. That's no big deal for them. It is for me... and for that reason, I can have an amazing amount of pride in myself, just for getting through my day.

I don't have to write the next great American novel. I don't have to conquer the elements in some great quest. I don't have to discover the cure for the common cold (beer) or find the cure for cancer (cannabinoids). I just have to wake up in the morning and take my pills on time. Right then, I've already saved a life for the day: my own! Everything after that is gravy.

If I am able to achieve some semblance of "normal," then that's incredible. I have to obey a lot of very strict rules, and do some really crazy things in order to reach normal. I have to get 11 hours of sleep on work nights (plus Friday, because I'm usually at my rope's end by then). That means going to bed at 7:30, so I can be up at 6:30 in time for work. It takes me two and a half hours to get ready in the morning, because I first have to get all my medications in my system and get them properly digested before I can do anything else. After they kick in and start working (usually an hour before I notice the effect) then I can get started on my day like a normal person (get dressed, brush my teeth, etc.). By the time I'm driving to work, I've already accomplished a miracle! My day hasn't even started, and already it's amazing.

Then, every day that I'm able to come to work and have people think that I'm normal just like them... that's another miracle. I'm able to manage my symptoms through my day so that they're largely invisible to everyone else. I'm able to complete my work, and no one else is wise to the fact that I'm fighting to keep this up. I'm fighting... and I'm winning. Every day is a struggle, and every day, I work to make it seem like it isn't there at all. My success depends on no one else knowing how hard it is, as though it's no bother at all.

My self esteem comes from my ability to make my problems no problem. It's a lot of work!!! And each and every day I can be proud of myself for my efforts. No one else knows how much I struggle, and I like it that way. The less they know about my disease, the more successful I am. Like the graceful swan who is gliding on the surface and paddling like crazy beneath the water, so too do I make all this struggle look effortlessly beautiful. That's my secret triumph: I make this look awesome.

So, rather than feel sorry for ourselves for all the extra things we have to go through each and every day (not to mention the crazy drama that pops up as a matter of course), my suggestion is take all of that anger and turn it into pride. Yes, it's difficult to the point of tears. But if you can manage it, and do so without the tears, well then, look at how mighty you are! If you can put up with hellfire and brimstone, and do it with a smile and a cheerful attitude, there's no better way to cheat the devil. Be proud of every little thing you can do, because these diseases want to make it so we can't. Hold your head high, just for the fact that you endure. That alone is mighty enough.

But I don't look sick? Thanks! I work very hard to keep it that way. ;)

Tuesday, November 27, 2012

Stop Negative Thoughts

Before I started therapy, my mother used to live in my head. She'd watch everything I did, and provided a constant stream of negative feedback. If I did something wrong, she'd yell at me and let me know how stupid I was for not seeing these consequences ahead of time. If something was wrong, she'd explain to me how it was all my fault, and that this was evidence of how rotten I was. If it wasn't my mother, it was my grandmother ("You dummy!") or my father ("Goddamnit, get your $#!+ together!"). They would scream at me, in my head, all day long, and then made sure to take a thorough inventory of everything I'd screwed up, and tell me all about it as I was trying to fall asleep. It was a brutal mental onslaught. And no matter how much I screamed back at them (in my head), I couldn't get them to shut up.

Finally, I asked my counselor: "How do I get that voice in my head to shut the f**k up?" (I had an awesome relationship with my counselor.)

"I'm so glad you asked," she said smiling. "Most people don't have the courage to admit they have that voice---or voices---in their head. They think it makes them crazy. But that's perfectly normal. Would you like to do some EMDR* on it?"

"Yeah! That's be great."

EMDR, for Eye-Movement Desensitization Reprocessing, is a type of therapy that allows the patient to detach from emotionally-charged memories, and look at them from a less personal point of view. And my counselor had special training for trauma recovery designed in Seattle. And she knew what was coming, because it was something true of all people...

What I discovered was, it wasn't my mother, or my grandmother, or my father yelling at me. It was ME. It was my inner child, scared and insecure, who had put on Masks of Authority to appear like my mother, etc., so that I would pay attention and be careful. It was actually a perverse form of self-love, where I was trying to protect myself, by getting mad at myself. When I was screaming back at myself, all I was doing was yelling at my most vulnerable self.

So, instead of fighting fire with fire, my counselor gave me a new thing to say:

Hi, I understand that you are trying to protect me, but this is not helpful right now. If you could leave me alone for a little, I'd be able to concentrate on this more, and be more careful. So, could you please be quiet for a little while? I appreciate your trying to help, but I'm okay right now. Thank you.

Later that night as I was setting about some chore, the Voice started up with it's barrage of negative commentary. I stopped and recited what my counselor told me. And, like magic, the voice went away! A sense of lightness came over me, and I was able to complete my chore in peace. I even did a really good and thorough job. So I stopped again and told my inner child:

See? Everything worked out! You don't have to yell and scream at me for things to work out. It's okay. I've got this managed.

Since then, that voice is mostly gone. Oh, sure, it pops up every now and again, but I just remind it of what I told it the first time, and it goes away again. I am, for the most part, left at peace. And it's a beautiful thing.

Try it! Share your result here!

Saturday, November 24, 2012

Thankful Thanksgiving

This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.

That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.

It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).

And I was going to write some Pollyanna-ish things about, "If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.

Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.

Winter was the time when other people spent as much time indoors as me.

Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out" more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays less if I don't participate at all.

Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my real suggestion? If you have to have holidays, find a culture that's completely different and start following their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.

Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is: take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.

By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)

I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.

I hope you are staying strong through this time, whatever path you choose for yourself.

Monday, August 27, 2012

Nervous working...

I'm nervous my co-workers think I'm lazy...I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...
They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!


Ah, yes... that feels better. What self-talk do you use?

Friday, July 13, 2012

[THP] What's My Mountain?

Sometimes, it's really difficult to have direction in life. Should I take this job? Should I sign up for that project? Should I go back to school? It's difficult to know what's going to make us happy. Additionally, our brains are particularly bad at truly anticipating how something is going to affect us. We will predict that a bad event will feel much worse than it ends up being. We're equally poor at determining what will actually make us happy. And that's because only about 10% of my outside life correlates to my happiness. The other 90% is generated internally. Great! Now how do I generate it?

I believe the answer is revealed in a commencement speech given by Neil Gaiman. In it, he talks about never having a career, just having a list of everything he ever wanted to do with his life: write a novel, make a motion picture, make a comic book. He set those dreams up as his "Mountain" and then he made his decisions base on whether or not those decisions would take him closer, or farther away from, the Mountain. He got his first job as a journalist, because that allowed him to ask questions. He could get his answers on how to get further along towards his Mountain that way.



We all have a Mountain in us. It doesn't matter if the idea is big, that's what a Mountain is supposed to be! It's got to be something we can see from far away, large enough that it can attract and hold our attention, even if other things appear on the horizon. A Mountain is something that, after days of trudging a hard path, we can still look up and see that we're heading in the right direction.

That's why it has to be your Mountain, and not anyone else's. If the goal is to build our happiness, then it can't be someone else's Mountain. That makes them happy, not us.

Find Your Mountain
Take out a sheet of paper and make a list of everything you wanted to do with your life. It doesn't matter if it's impossible, put it down anyway. Impossible doesn't matter. The Dream is what's important. We first need to identify what those dreams are, then we can worry about possible or impossible. So close your eyes if you have to and think back to when you were a child, and everything you wanted, even if it's something as fantastic as meeting Spiderman. Just put it down. Did you want to walk on the face of the moon? Be a race car driver? Create your own neighborhood? Breathe underwater? Make video games? What ever came to you in a dream that you thought would be neat? What do you get your hair on fire about? Write it all down. Those are the stones that make up your mountain.

Not Sure? Hampered by Disability?
Don't worry. If you're unsure, or if nothing quite grabs you enough, that's okay. It may be that you have correctly surmised that you don't have anything you're (yet) passionate enough about. That's okay! I stumbled upon what I was looking for. I just followed what seemed like a good idea until then. And surprisingly, all my choices along the way, even though I didn't' realize it at the time, have played their part.

If disability stops you then try to come at the issue from a different angle. Perhaps there's a way to be involved in a new way that accommodates your needs. This isn't always possible, or sometimes it hurts too much to be involved in activities we used to love in a limited capacity. That's understandable and natural. In that case as well, it's probably just a matter of time. You need to explore as much as is possible, and draw from that new things that move you.

New technologies that empower the individual are being designed all the time. Things will become available that weren't before. You'll have new experiences, think new thoughts. Each day, a new beginning.

If you know a direction, excellent. Go there. If not, look inside for who you are, look outside for what you like, and live to experience new things you haven't tried before. It will come to you. You can relax.

I don't have enough money...
Contrary to popular belief, it's not the next big thing that's going to launch you. It's like that old nursery tale about the tortoise and the hare. Slow and steady wins the race. Japanese Kaisen says “Don’t write a book, write a page…” You might not have enough money for the big plan, but you might have just enough to get a small project started that would allow you to showcase, demo, or even kick-start the next phase.

I don't have enough education...
First, find out if what you want to do requires an education. If it does, figure out if it's a formal education you need, or if certificates and exams are more the industry standard. Remember that where you graduate from doesn't always have to be where you started. Figure out where you want to be, and work your map backwards from there, until you're able to connect it to where you are now.

I don't have the spoons...
See if you can delay gratification, and just work on a slower time table. If you symptoms are managed, these things are possible, if we're able to not worry about when it gets done, jsut thatit gets done. We will have to reassure ourselves, however, that jsut because things are slow, doesn't mean they're forever stopped. It just takes a little more patience to see progress.

I don't have enough symptom/pain control...
Then don't worry about a Mountain right now. You're in Epic Battle! You've got other things to contend with. If you're able to do things with your Mountain, great! If not... no sweat! You've got other, higher priorities. Once your symptoms become managed, then you can look at really setting a course again. Notice I didn't say cured.... I said managed. Scientific studies have shown that if symptoms are managed, a chronic illness has little to no negative impact on a person's happiness. In fact, it can even be a benefit. However, if the symptoms are not managed, it can be a living hell that's taking all your concentration to deal with.

Don't worry. Your Mountain will wait for you. It will not abandon you. And you might be surprised at how far you're carried forward despite your limitations, once you get some breathing room and a chance to check over your shoulder. There's the constant feeling that you're missing out on life with an unmanaged chronic illness (sometimes even with managed ones). That's natural. That's because we long to do, when we have not been able to do. But that's like summeritis in the last few weeks of school, then a month into summer break, yelling, "I'm bored!" You know all too well what you're missing out on. So use now to make those lists of all the things you want to do, so that once things are managed, you can pounce on those dreams like a tabby on catnip! Or, if it's too much pain to think about it, just relax and know that time changes things. Opportunities arise from the strangest corners...

What are some of your suggestions, or tales of your experience, in looking for your Mountain?

Previously in this series: Building New Habits, Breaking Old Ones

Thursday, July 5, 2012

[THP] Building New Habits & Breaking Old Ones

Part of a Facebook Event called The Happiness Project (not to be confused by the book of the same name... no relation)

Going into this event, it may be useful to know some of the concepts for building new habits and breaking old ones. Some of these are ideas from the book, but nothing here is content from the book, unless specifically mentioned. One Path of Least Resistance is (or what Shawn calls, "The 20-Second Rule"). Shawn uses this guideline to help build new habits, and break old ones. Take "20 seconds" (or more... the more the better) away from any task you want encourage yourself to do and add "20 seconds" to any task you want to keep yourself from doing.

Time and time again in psychological studies, it comes up that one of our very base natures is to do what is easy, or to not do at all. This is as deep as biology, because to rest is to conserve energy, even on a molecular level. What it was for our ancestors, the cavemen, was we needed to rest to conserve limited energy for when we needed to do other things, like run from that cave bear. Activity was done largely in bursts. The same is true of other animals. Do you know how much your house cat sleeps?!? 16-20 hours a day. His wild counterparts aren't much different. We are all wired to mostly do nothing.

So the next time you find yourself sitting on the couch doing nothing, instead of out exercising when you know it makes you feel good... Or why you end up sitting home on the couch playing video games, even though it's far more rewarding to go out with friends, understand this---it's not because you're lazy. It's that you're extremely good at conserving energy. Problem is, this becomes an obstacle when trying to form new, healthier habits.

However, this "Path of Least Resistance" attitude can also be used to our advantage. For example, it's far easier in our minds to "Opt-in" (i.e., "option-in," meaning, the choice was made to include you in the option) rather than change our course of action. Organ Donor registries have discovered in recent rears that the mere phrasing of a question can mean the difference between less than 10% of people signing up to more than 90% of people signing up. That is,

"Would you like to be included in the organ donor registry?"
(Check yes to be included.)

versus

"Would you like to not be included in organ donor registry?"
(Check yes to be excluded.)


It's a big decision! So the easier choice is to not check the box at all. The first example got 10% of people to become organ donors. The second received 90% participation in the organ donor program. Just because it's easier to not make the decision. Do I? Don't I? Do I really need my organs when I'm gone? Do I want them to cut em up before they bury me? AHHHH! I don't know, I don't wanna think about this, now, and I've been here long enough! Huge difference in participation rates.

We can think about this when it comes to our daily lives and make new things easier to make a habit, and things we want to quit, more difficult to deal with. Shawn tells the funny story of sleeping in his work-out clothes, because it was more of a pain to change out of them that it was to just go with the flow and put on his running shoes and exercise for the day (exercising in the morning has particular benefits to the mind -- buy the book for details).

On the flip side, if there's a habit that you want to stop, make it more difficult to engage in that habit. Say you want to want to watch less TV. One way to accomplish this would be to remove the batteries from the remote controls and put them in a drawer. Even the small act of adding that much time to watching TV (first I have to find the batteries) can be dissuasive enough, especially if you've left a book you want to finish right by the remotes. That makes the path of least resistance reading a book, rather than watching TV.


In moving forward with your Three Good Things, try to make this exercise as easy as possible. If you're on Facebook, this is as easy as joining The Happiness Project Facebook Event (tagged here as "This Happiness Project"), and you'll get a daily reminder to post your Three Good Things (plus Blogging/Journaling reminders on Sun/Tue/Thu). If you're not a daily user of Facebook, or you would rather participate on paper, try leaving a notebook on your pillow so that your remember to write down your Three Good Things before bed. (You can use this trick for your Blogging/Journaling task, too!)

For your Meditation task, find some music you like that lasts for 5 minutes for the breathing exercise, and one that lasts 20 minutes for the positive visualization exercise. (Ah ha! Didn't know you could music, now, didya? Yes, this is perfectly legit, though music without lyrics is probably the least distracting. IMHO. YMMV.)

Right now (in the Facebook Event) we're discussing simple ways for people to do their Five Conscious Acts of Kindness. There are all sorts of great ideas!


Next up... What's My Mountain?

Sunday, July 1, 2012

I'm Working Again!!

Bust out the fanfare and call a parade, I'm working again!! Now, it's not an absolute sure thing. I could collapse under the stress and discover that it's not possible... but right now... oh, things look good! I'm able to control my pain through my medication. No one at work is any the wiser that I have this much going on with me... I got my first paycheck this week. A PAYCHECK!!! It was only a few months ago I was dreaming of having my symptoms managed enough so that I could work, and now... holy cow!!

I didn't think this was possible. I didn't think they had the drugs out there that could take care of my pain and not demolish my mind. They do! I didn't think there was a way to control my nausea without putting me to sleep. There is! I didn't think we could get my migraines to a point where I could work through them. We have! I didn't think there was medication for the neuropathy so that I could be reliable enough to write all day. So far, so good...

I'm pacing myself. I'm taking things slowly and not rushing. I'm being cautious with my body and getting plenty of sleep. Right now all I can do is work and sleep during the weekdays. But that's okay. I get SO much of my life back. I don't have anyone else I need to be awake for during the week, so what does it matter? And as my tolerance for activity builds, who knows??

We still have to battle my autoimmune disease. I need to save up so that I can make it through 4 months of treatment. But holy cow, now I have a way to do that!! I've got 9 months... nine months of training wheels, where I still get my SSDI in case this all suddenly falls apart on me again. I think I'm able to keep my Medicare longer, but who knows with this whole Obamacare...

And I realized today that for the past year, I've been able to shower standing up, and only when I was with migraine or the stomach flu did I resort to sitting in the tub! That's HUGE!! That was things started getting scary for me when I originally got sick---I would get too dizzy in the shower and would risk passing out if I tried to stand. It's been over a decade, and I'm now able to shower like a normal person again!!!

*LOL* Oh, but there is a mountain of debt awaiting me. I'm pretty sure it's about the same price as a house (the whole house, not just the down payment). That is daunting. But thankfully, I have a lawyer in the family who might be able to help me restructure my debt. Oooof... that's a huge problem of success: cleaning up the wreckage of my past!

But now I get to clean up the wreckage of my past! Now I can start to be a responsible citizen again! I need to pace myself in this area too, because trying to do too much too fast can leave me broke. I need to be responsible with my finances, of course. However, now I'm not making a wreck anymore. (So far... training wheels, and we'll see...) I'm a really real adult again! I don't need help. I can accept it if its offered, but I don't need it anymore. I can take care of myself!

At the beginning of this disability I was in so much pain I didn't know how I was going to survive, let alone get back to where I was. There were several times where I almost didn't! That was scary... I was lost, deep in the wilderness of chronic illness. Am I out of the woods? Maybe... signs are pointing to yes...

HURRAH!!!!!!!!!!!!!!

Thank you everyone for your prayers and support during this time. I'm still nervous about my ability to do this, but I know how proud everyone is of me, and for that... bless you. I've felt so worthless and miserable for so long. It's tears of joy now when I choke up. You believe in me, and that means so much. THANK YOU!!

Wednesday, May 16, 2012

Mental Health Month Blog Party! Recognizing Good Mental Health

Mental Health Blog Party BadgeI know I said I was going to to a Twitter & Tumblr Roundup today, but I completely forgot that today was a scheduled blog party (#mhbogday) for the American Psychological Association! Their challenge: How can you help people recognize the importance of good mental health, overcome stigma, and seek out professional mental health services when needed? Well, first off, I think that mental health is something we shouldn't just consider when it's needed. Mental health is like physical health. We all participate in mental health exercises, we just take most of them for granted. We can enhance our mental health with training and guidance from professionals, no matter what condition we're in. And most people have a "non-serious" form of a mental health issue, and manage it successfully all their lives. There is nothing about mental health that we need to be ashamed about.

Like physical exercise, most people get their mental health from regular daily activities. We engage in routines and rituals that help calm us with their familiarity. We do our morning routine before work, we check off each item in our routine as we complete it, we head into our day knowing we have started off on the right foot by doing all we're supposed to do. This process is so unconscious that we don't even notice it. But when our morning routine is upset, when there's some emergency that interrupts us, boy can we tell in our mental state! Things feel discombobulated, we feel out-of-sorts. Our day moves forward, but we're a little on edge, because our morning mental routine was thrown. We become aware of how important this habit is to our mental health.

Similarly, rituals like birthdays or going to worship, also help us feel a sense of normalcy and a connection to the flow of life. We take these things for granted when it comes to our mental health, when we engage in them successfully. But we notice how much they help our mental state the moment we can't participate. Being too sick to enjoy a birthday, or missing mass that we regularly attend, can upset us deeply. This makes absolute perfect sense! We look forward to these activities! Marking milestones helps ground us in a sense of accomplishment; they remind us of the BIG picture. Rituals like worship and holidays bring tradition and the past into the present; again, they remind us of the bigger picture. These things comfort and console us. When they're present, they help our mental health. When they're missing, we feel it.

As with physical exercise, we can add mental health exercises to our lives to help bolster our overall mental health. Professionals can help by teaching us new techniques and giving us new tools that we can then use in our every-day lives. It doesn't matter what shape we come into walking through the door, they can help improve our mental health. At the very least, validation from the professionals that we're doing well is benefit enough! But what is true of most people (myself absolutely included), is that we've grown up the best we can, but we've picked up a few issues along the way. We may have gotten them early (like childhood), or we may have gotten them through just trying to survive life (medical trauma, Katrina, 9/11, death in the family, victim of a crime). There is no such thing as "battle hardening." Eventually, life gets to everyone. There is no shame in this. And mental health professionals can help us mend the areas of our life where we are wounded in the soul.

Mental health issues can be no big deal, like a fear of spiders. That's not to diminish anyone's fear of spiders! But a fear of spiders can be managed by avoiding them as much as possible, not watching films that use spiders as a theme, having your house or apartment spayed with a chemical barrier, etc. A "serious mental health illness" is a legal term (from the Department of Mental Health and Substance Abuse Services is in the link above), and basically means severe impairment. This affects less than 5% of the population. Most people who use mental health services, like people who use physical health services, do it for a condition that is manageable. Yes, flares can happen that upset the regular flow, but on the whole, the symptoms do not interrupt life. Non-serious mental health illness is just like chronic physical illness. Most people have it, and you'd never know it unless they told you. It is nothing to be ashamed about.

Me personally? I've mentioned here that I have PTSD from my medical experiences. I can have panic attacks trying to see a doctor. It's nothing personal: I don't like doctors. I've been treated horrifically, and I've nearly died twice: once from an adrenal crisis when my blood pressure bottomed out, and second, from a MRSA infection following my surgery. It would be abnormal to go through those situations, and not have it affect your mental health. So, yeah... I'm a little nuts. I'll own that completely.

I also have very rapid-cycling hypomania and depression as a regular function of my migraines. That's what happens when your body dumps its supply of serotonin from the brain and blood. The only thing I can do is hold on to the best of my ability until it passes. I have symptoms like a visual aura, and ways to watch my behavior, that let me know when these moods are coming on. I have tools I've learned, and management techniques I've picked up (never go shopping when in hypomania---everything looks like a good idea!) to keep me safe. I'm on a long-term SSRI medication (#headmed) that works well enough, but it certainly doesn't do a complete job. Hopefully Big Pharma and science will come up with some better answers, soon. Until then, I manage well enough, and things have gotten much better since I got pain control.

We are making amazing technological advancements in our understanding of the brain, and how it functions. From this, we are learning more about all ranges of mental illness, from the mild to the severe. Mental illness is nothing to be ashamed of, whether you were born with it (and therefore had no choice in the matter) or picked it up along the way (like a bad flu or a broken bone). It's not a sign of weakness. It's a sign of survival. It's the wide range of normal, human behavior. Our mental health is like our physical health---and we should take good care of ourselves! This includes check-ups with a doctor (even if it is just to tell us we're doing fine). We can raise awareness, and take away some of the #stigma, so that people who need help, aren't afraid to get it. Be proud of your mental health! We all have scars...

Wednesday, April 18, 2012

#HAWMC - Book quote inspired post: I am a caveman


"[Your body] is an antique biological machine that evolved in response to a world that no longer exists." (The Time Paradox) Today's prompt is use a sentence from the nearest book as inspiration to write, free-form, for twenty minutes. (I cheated a little and went over on time, and didn't quite do free-form. But that's because I love this book, The Time Paradox, and I wanted to do it justice. It explains so much about how difficult it is for out little human minds to wrap around reality. My body's design hasn't really changed in the last 150,000 years. My environment, however, has changed drastically---largely due to our own efforts! My analog, caveman brain is in a digital, machine-driven world. Let the comedy begin.

For example, did you know that it's actually impossible to live in the present moment? That's simply true because our nervous systems lag behind what's actually going on. It takes time to see, hear, feel and process all those other wonderful senses---from 10 to 250 milliseconds, in fact. My organic brain is designed to anticipate, because that's the only way we can function in the world when we're always lagging behind. However, this is where everyone gets tripped up. What I anticipate is a story I've made up in my head, to try and predict the future, based on my past experiences. It's still a story. Reality is often painfully different. And if, say, I have an extremely traumatic past experience, that can cloud my judgement of the present moment, because I can now anticipate a terrible future that I didn't know existed before.

Further, I can become so wrapped up in avoiding that potential terrible future that I end up sabotaging myself in the present moment. In my anxiety and attempts to make sure that trauma never happens again, I can in fact create the very situation I'm trying to avoid. I anticipate that someone is going to be mad at me, so I get defensive. But then the person does get mad at me, but it's because I got defensive. They get confused because they don't think they've done anything to get me so worked up. And they're right! I'm jumping to conclusions and trying to anticipate moves. But in doing so, I force the situation to take a certain shape; a shape the other person may not want at all!

If I actually want to respond to the situation as it is, and not how I anticipate it to be, what I have to do is slow down, relax, and observe. My caveman brain is trained to look out for the tiger, find food, survive the elements, and maintain my place in my community/family group. I don't have to worry about predators like my caveman ancestor did. Finding food is as easy as going upstairs to my refrigerator. We don't just survive the elements anymore: we make fashion statements with our clothing. My community/family group is scattered across the country. Is it any wonder then, that I sometimes feel isolated, and adrift in a sea of strangers? Is it any wonder that I struggled a long time for a sense of purpose? Is it any wonder that I startle myself and see danger that isn't really there? No... But the awesome thing is when I change my perspective of a situation, I can change my response to that situation. Instead of making driving a competition with me and the other cars on the road, I can instead envision that we're all being carried on one big river, with different currents, and it doesn't matter if that guy gets in front of me. We're all part of the flow.

From an objective point of view, "bad" things are always going to happen in my life. I can't always avoid them. However, so far, I've been able to survive, despite it all. So I should give myself credit for being able to handle these situations as they arise, rather than always being on the defensive. I can do that with my doctors too. It's absolutely paramount that I treat each new doctor as new, and not a repeat of times past. Instead of anticipating for the bad experiences I've had, I can treat each doctor as a brand new opportunity for success. And by doing so, I'm being more fair to them, treating each doctor as an individual, rather than judging them as a group.

My caveman brain wants to make these associations to keep me safe from encountering the traumas of my past. But I'm a stranger to them. When I act defensive, I'm not giving my doctor a fair chance to do right by me. And I want to be as open and honest as possible. One, that helps them learn what's going on in my body more accurately. Two, it's the only way to build that all-important bond of trust. We may be all civilized and technologized, but human relationships still come down to primal rules that existed long before we built cities. Integrity still boils down to saying what you mean, and meaning what you say, backed up by proper action.

Like no other creature on this planet, we have changed our environment to better serve our needs. All animals change their environment to some extent, and a lot of animals do it with a purpose, just like us (building traps for prey, building shelter, nesting, etc.). But no other species has done it with such understanding of what we are going on about. We have taken the reigns of our fate as a species, and changed how we interact with the world. We live according to a clock, rather than the setting and rising of the sun. We are able to treat disease and strengthen fragile bodies that would not survive otherwise. But underneath it all, we're still just animals. We all have animal reactions, animal irrational behavior, and animal weaknesses. I have to remember that if I'm to successfully take responsibility for my life.

Tuesday, March 27, 2012

Responsibility and self esteem

Pushing the Limits, bronze sculpture by Gregory Reade
As I've slowly begun to strengthen, as a result of physical therapy, I've noticed my mood increase considerably. But it's not from the physical therapy, itself, per se. It's because I'm able to do the little things again. You might be amazed by these little things that make me so head-spinningly proud; they're very mundane. But they're things I can do that allow me to be more responsible towards myself. THAT is what's helping my mood. I'm able to do simple things that are a little more responsible, and each time I'm able to add a "good deed", my self-esteem grows.

I have enough energy to fix a meal and put the dishes away afterwards! I can also do a little spot cleaning, so that you'd never know something was cooked there. I can make meals from (relative) scratch. But for years I had to rely on microwave food because it hurt to stand that long. The bottom of my feet would catch on fire withing minutes. I even kept a chair by the microwave so I could rest. Now I can stand long enough to brown meat, make my sauce, finish the pasta and combine it all together. I don't have to rely on frozen food. That's HUGE, and probably a lot better for me nutritionally.

My car is clean. Before now, it was too much to ask me to bring the mail in with me when I left the car. It was too much to ask after being out and about. Whenever I was getting home, I was always near exhaustion or in pain. Maintaining a clean car doesn't fall high on the priority list. Open mail and magazines piled in the passenger and back seats. About a month ago, when it first started getting nice, I was able to clean out snow-drifts of paper. These days when I get home, I don't have all that pain. It's no problem to grab a few extra things on my way inside and maintain the cleanliness of my car. My hands aren't on fire or aching from the micro-vibrations in holding a steering wheel. Beauty!

Best of all, I'm pacing myself well enough that I haven't reaped enormous costs on the other side! Talk about being responsible! You mean I may actually have a handle on this bag o' bones? You mean maybe I've learned how to read these wacko, random symptoms well enough? Have I really learned how to recognize when I need to rest and when I can push it, so that I can make improvements to body? Wow. Wouldn't that be awesome? Sure, I could push my limits before, but there was always hell to pay on the other side. When we're in the grips of chronic illness, anything we do is robbing Peter to pay Paul, and Paul takes his interest in pain. But now, it seems that grip is loosening on me. Now I push a little, ease off when I notice the fatigue creeping in, I'm able to keep myself uninjured. It's sad that my body is such a dangerous place, but when was the world safe? Perhaps I'm learning to manage anyway, and these exercises will give we more wiggle room moving forward!

I do hope this trend continues. I hope it's not a fluke of the incredibly dry weather we've been having. I hope I'm actually getting better at these things. Because each time I'm able to do one of these little responsible things, a little voice chimes in my head, "Oh, look at what a good girl you're being! You're making a meal like a really-real adult!" or "Wow, look at that, girlfriend! You've kept your car clean for a month now! Fierce!" or as I got to tweet earlier: "#PhysicalTherapy went well today! I got to #levelup & I'm now doing more difficult exercises. Woot! #IamMighty Need a nap low. Lol" You know I'll be prancing like a peacock when I can actually hang my clothes up, rather than just moving them from the clean basket to the dirty basket!

And you may have noticed it, but I didn't talk about this improvement for a month. I didn't want to jinx it. There are so many failures---of drugs, of therapies, of professionals, of ourselves---that we encounter as the chronically ill, that it can be really difficult to believe in something. However, I must admit that my life has improved, maybe not dramatically, but certainly fundamentally. I've been able to do so many of the little things I usually just ignore, guiltily. Now that I can do them again, it's like a weight has lifted. I'm being responsible, things look better, order has been restored where there was once chaos.

Let there be more of this, please!

Wednesday, March 7, 2012

Batmanning for health?

You may be familiar with the internet phenomenon "planking" where people take strange pictures of themselves acting like planks. Well, someone got the bright idea to up the ante and they called it "Batmanning": hanging by your feet like you're a bat. My doctors have now prescribed this for my kidney stones. However, I don't have to go to strange places and take pictures of it, but they want me hanging upside-down! Apparently I haven't been doing enough head-stands in my workout... Why they didn't cover that in grade school P.E., I don't know. I think I should write my congressman.

All kidding aside, they really do want me to do upside-down exercises. Here's an illustration of a kidney. The tube that enters the kidney is the ureter. It divides into branches, and two of them you'll notice point downwards. That's where my kidney stones like to form, just like this poor fellow in the picture. And like babies, kidney stones like to move around, flip over, and all sorts of other fun stuff, which in turn causes pain. They are far from smooth, like the one pictured here. No... these stones are sharp little buggers.

My kidney stones are calcium oxalate. But their either di- or mono- and we're not sure which. Since they've now been pulverized into itty-bitty pieces, I can safely pass them without pain, we can collect them, have them looked at in the lab, and then see if there's anything we can do to keep this from happening again. Below is a picture of a calcium oxalate stone. This one is 20mm wide (2 cm). I had two that were 7mm each. Larger than 5mm and the body can't pass them on its own.


How would you like one of these inside of you?

I'm supposed to drink a liter of water, wait a half an hour, hang upside-down for 30 minutes, three times a day. I have trouble remembering how to eat three times a day! So I'm going to rig my bed to be at a slant (another option), but that runs the risk of causing a headache in my sleep. Sometimes there are no good choices, only choices. lol

So more home medical care, including one crazy internet fad, keep up with my water with a dash of lemon (for the electrolytes), and back to the doctor once the analysis is done. The GOOD news is, all the other stuff I was putting on hole (botox for my migraines, a new health shake) I'm now free to get back to. I've decided to put a positive spin on this whole thing by declaring: "I'm magical! I can make rocks with my body!!!" lol

Make it look awesome, baby... make it look awesome. :^D

[Edited to add] No I don't think it helped. The main thing anyone needs to do is drink lots of pro-kidney beverages.

Tuesday, March 6, 2012

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken
This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.

Tuesday, February 28, 2012

Faith in sickness and pain

When we talk about faith, it doesn't have to be about the divine. Regardless of what faith your are, or if you have no religious faith at all, a chronic illness can really test your beliefs. I'm on the fence as to whether there is a God, or gods, or whatever. But that doesn't mean that I have a lack of faith. Faith is still fundamental to human existence. I see faith as the absolute confidence that something is true, even if it hasn't come to be yet. Faith to me doesn't even have to be spiritual. It can be faith that the electricity will work (the bill is paid). All types of faiths get challenged in sickness and pain, and there are several ways to respond. I choose to respond in the way that best benefits the situation.

I have faith in humanity, and faith that people are basically good. Do I know that stranger is good? No... But I believe they are until they give me proof otherwise. If that stranger proves to be shifty, I have all sorts of countermeasures I can use to protect myself. However, when it comes to my faith in my friends, I get evidence that could be seen as "otherwise." Getting sick isolates me from other people and makes it difficult for people to want to visit me. We have a strange aversion to illness and injury as a species. I've seen it happen to myself, to friends of mine, and in other cultures. Sickness and injury, at a primal, subconscious level, are a sign of weakness and something to be avoided. Going really, really primal, it means that you're likely to be picked off by the wolves. Other people will stay away because of that, and not realize they're doing it for that reason. That can really test my faith that people are basically good. We would all like to think that if we got sick or ill, people would rally around us, tend to us, makes us better and bring us back into the fold. But generally, that's not how it happens. I know there is the urge in me, if I can get better/when I do get better, to just leave this all behind and never talk about it again. Go back to "normal" and leave this in the past. I doubt I'll do that (I know too much to forsake those I'd leave behind), but the urge is there. So in this case, my faith is convenient and sometimes contrary to evidence. I will lose faith in that stranger the moment they make a untoward movement. I will keep faith in my friends even with evidence to the contrary, because I prefer keeping my friends.

My faith can be faith that my body will be in similar condition tomorrow as it is today. It can be faith that the floor will be there when I put my foot down. It can be faith that what I'm feeling is real. All of this gets thrown on its head in sickness and injury. Where I think the floor is may not actually be where the floor is. What I'm feeling, whether physically or emotionally, may be a complete fabrication of my nervous system and have nothing to do with reality. And when I wake up in the morning, it may be in a condition that takes me completely by surprise. It's very difficult to wake up and immediately be able to tend to some dire bodily need. And by dire, I mean things like vomiting, severe pain, and what I affectionately call the "splodie butt." But I have faith that my body will work anyway, because it's useless to stay up worrying---which will make me sick---over the possibility that I might be sick. I have no faith in my feelings. I always doubt them and test them against reality. I have neuropathy and PTSD. I know my feelings and sensations are often wrong. I have faith that the floor will be there. I'm not always right, but I'm good at managing the fallout when I'm wrong, so I don't mind keeping that faith.

I have faith that time will eventually change things for the better. Does that mean I'll survive long enough to see that goodness? No... But I believe it could be right around the corner. That's good enough. However, when things start changing from bad to worse, this really comes under fire. At some point, everyone starts to wonder, "Just how long can this go on? What did I do to deserve this?" Limits are strained, broken, or downright obliterated. That can easily be seen as evidence that things are not going to get better soon enough. But I've got to hold on to that faith anyway because the alternative is worthless. I want to be someone who fights until I'm absolutely overwhelmed. I've been at that point where I was so sick I didn't know what was going on, and a team of doctors was fighting to keep me alive. I have sworn to myself that no one is going to be able to say I gave up easy. If my death is anything, I want it to be respectable. And I have faith that I can keep that promise to myself. Is that true? Who knows!? And it doesn't matter. The faith is what's important.

Do I have faith in a benevolent spirit that has some concept of sin and holiness? I don't know that that's true. I do, however, have faith in mystery. Some things work out and we have no idea why. Some things don't work or work only sometimes and we don't know why. There are some things that only work when we're not looking at them and we don't know why. I have faith that there are bigger and stranger things out there than my little mind can comprehend. Could that include a benevolent spirit that has some concept of sin and holiness that is watching over me? Sure! But does it matter? If it matters to you that you go to Church/Synagogue/Mosque, then it matters to you and that's good enough. Me, some days the ritual of prayers helps. Other days, I think if there is such a Higher Power, we're going to go a few rounds before this is all over (so it's more comforting at such times to think such a being is impossible). Some days I think this is all there is. Some days, it's downright spooky. Here, my faith is complicated, complex, and I'm not even sure I understand it myself!

So faith can take many forms, it can wax and wane, and it can be clear as mud sometimes. It's still a human activity that we all engage in. It can be mundane or divine, metaphysical or physical, and everything in between. Injury and illness, pain and sickness, will test faith in a number of ways. We struggle to hold on. Sometimes, we find we have to let go. But I try to do so in ways that enhance the situation rather than make it worse. Sure, that means biting the bullet or dealing with upsets, but that's life, right? We pick ourselves up, have faith in a number of ways, and keep going. How's your faith today?