Finding Autonomy

Losing my health resulted in the loss of my autonomy in ways I’m just now realizing.  I have let myself be defined by my illness and by others.  I promised myself I would not let this happen to me again, but here I am eating multiple humble pies.

I began waking up a few months ago when I made the choice to make my only responsibility be taking care of my health.  I began exercising again, one of the best decisions I’ve made.

I currently have too much time on my hands to think about everything.  Lately I’ve been thinking about relationships.  I realize I allowed myself to become too much of an us, and lost myself in the process.  I promised myself I would never let myself become defined by anyone else again, but I find myself there yet again, and now I have to find myself again.

The benefit of having to find myself again, is getting to find the real me.  I believe I was busy hiding  behind school, work, and lots of socializing. I was taught as a young girl, that I should eventually want to settle down and have kids, but I’m realizing I don’t.  I want to travel, and soak up different cultures and as many experiences as I can.

It’s not that I haven’t tried to settle down.  I’ve tried twice but I always end up feeling suffocated.  I always end up wanting change, and feel the need to move on.  I use to tell myself I had bad luck choosing people that were emotionally unavailable, and now I’m realizing that I choose people that are emotionally unavailable probably because I am also emotionally unavailable, at least for long periods of time.  It’s not as if I’m incapable of loving someone.  I have a tendency to be overwhelming people, but eventually I go numb, and that’s when I get the itch to move on, no matter how great the person may be. This doesn’t mean I stop loving them.  I just don’t seem capable of loving them and staying.

I use to think I was lonely and wanted to settle down, but now I realize I’m just social, and just don’t like living on my own. I don’t need someone in my bed to not feel lonely, I just like knowing someone else is in the next room.

I don’t believe in “the one” or think I have a “soulmate”.  Just certain people that I connect with at different times and moments of bliss.  Sometimes I’m able to have multiple blissful moments with the same person over time, as long as the expectations don’t grow.  I think this is why I was initially drawn to polyamory.  It gave me more freedom.  I thought I would be ok settling down if I felt more free, but it’s not enough.  I want all the freedom.  I want to be able to pick up and move at anytime.

As far as children go, it’s not like I never think about being a mother.  I get sentimental when I see babies and how beautiful children are, but my very next thought is how I will have to anchor myself somewhere and I will be bound to another being for at least 20 years or so.  Then the urge quickly disappears.

My culture tells me I am broken because I don’t want to settle down and have children, and perhaps I am, but I have made peace with it, and I don’t want to live a lie.  I want to be free.  I will regain my autonomy,  find a way to travel, and fill my life with as many experiences as possible.  And hopefully then, I will be capable of writing about more interesting things than my illness.

Taking My Life Back By Force

I’m finally taking my life back by force.  I had two months to actually rest, with no responsibilities, and it finally made me angry enough to start the fire within me again.  I don’t cope well with being idle for long.  The last two months were torture, but necessary.  I haven’t had the energy to get angry enough to do something about my health, but the last two months gave that back to me.

My body responds well to pain.  I knew I had to focus what little energy I had been given back, into getting my strength back.  So for the past 9 days I have been going for 15 minute jogs around the neighborhood.  I knew it would cause my body great distress, but I was also gambling that it would make me stronger.  The first couple of days were ok.  Exercise still caused my body distress, discomfort,  and made me disoriented, but I was prepared for all of that.  I’m not afraid of enduring pain.  By day seven and eight I had people telling me to stop because I could barely get out of bed and was very disoriented, but I knew I had to keep pushing myself.  I told my girlfriend that if I was still able to argue about going than I was ok to go.

I don’t recommend my choice for others in my condition, and I’m certain my doctor would have advised me against it, but I knew I had to give it a try for my sanity.  I started this experiment knowing that I had no other responsibilities to attend to.  My goal each day was just to survive the jog.  Thankfully I managed not to pass out, but it did leave me disoriented and forced me to assume bed rest for the rest of my days.  My condition was made worse by the fact that most days I didn’t have the energy to fix food myself beyond heating up some ramen or eating granola bars and drinking gatorade.  This has been a frequent problem for me with my chronic illness.  Admittedly I don’t have the best diet because I don’t have the energy to care.

Last night I was incoherent, delirious, my head felt like it was imploding, and I could barely move but I made myself run anyway, and today I woke up and I was much more mobile.  I was able to do ten minutes of yoga, and I was well enough to go into the kitchen and actually make myself a salad and other much better things for myself.  Don’t get me wrong.  I still feel terrible, but I was much more mobile today and that’s what this was about for me.  Building back strength and taking my life back by force.  I haven’t made it as far as I have in life by taking it easy or taking things laying down.  I have always been a fighter and survivor and this girl finally has her fight back.

I plan on spending the next 5 weeks turning  these strength building exercises into habits.  I have been advised by many others to ease my way back into this but that’s not how I function.  I’m either all in or out.  Pain is the best way to get my body to respond, and I’m going to take advantage of that.  That is one of the many reasons why I chose jogging.  Others reasons include being that I want to get my memory more functional since running has been linked to improving memory. Jogging is also my drug of choice.  It’s what I replaced cutting with, and it’s a quick way to release serotonin which I desperately need for my sanity. Jogging also helps satisfy my ADHD mind, even if it leaves my brain feeling like it’s going to implode.

My goal with jogging is to regain the strength I lost over three years since I was told to be ever so careful with my adrenal glands so that I didn’t give myself Addison’s disease.  Thankfully, my adrenals look like they are functioning better, but now I have three years to make up for.  I hope to also take off the weight I gained which I know is making everything worse.

I still have a long journey ahead of me. The angst needed to make this happen took two months to manifest, when before it would have only taken two days.

This is just the beginning, but I swear I’m going to take my life back or die trying.

 

Why I’ve Become a Bad Boring Friend, or How to Help.

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When people find out I’m sick, they often ask what they can do to help me.  Now that I know what’s wrong I am better equipped to answer this, but the most helpful thing is getting others educated on my condition.  A lot of it becomes common sense after that.

I have dysautonomia, but more specifically I have Postural Orthostatic Tachycardia Syndrome.  The best description I’ve read about it thus far comes from an article from The Detroit News by Marney Rich Keenan “POTS is a malfunctioning of the autonomic nervous system, which is like the thermostat of whole body. The autonomic nervous system controls most everything our bodies do automatically, such as heart rate, blood pressure, digestion, body temperature, even pupil dilation.  With POTS, circulation is thrown out of whack. The most identifiable symptom is a pooling of blood and fluids to the legs and lower body upon standing. Low blood pressure is a key factor. The heart rate increases dramatically because the body is attempting to compensate for the drop in blood pressure.” The rest of the article “Pots Disorder Derails The Young and Healthy”which is great can be found here.   http://www.detroitnews.com/article/20140221/LIFESTYLE01/302210010

What this means for me on a daily basis is that my body prefers to stay horizontal as much as possible.  My body is affected every time I sit or stand up, by a dramatic rise in my heart rate.  Bending over to pick things up also feels pretty awful.  My body is constantly trying to stabilize itself and this consumes most of my energy.

This condition isn’t particularly life threatening, but it can make leading a normal life seem pretty impossible.  I am at high risk for syncope (fainting/blacking out) which I have experienced before.  Assuming I don’t hit anything on the way down, and I get fluids this is manageable.  The best way to keep this from happening is to keep me hydrated and for me to consume lots of salt.  So if we’re hanging out make sure I’m drinking water and eating every few hours.

My condition also means that I’m particularly vulnerable to catching colds or whatever else is going around, so if you think you’re sick or might be getting sick, do me a favor and stay away.  Getting through every day is difficult enough without adding any further complications to it.

I’m very sensitive to motion, the less traveling I do the better, and I try to keep the amount of driving I do very limited because of this. When I say I can’t dance, I mean not only that my dancing is an embarrassment to myself and anyone watching, but more importantly that I shouldn’t because the movement will definitely make me dizzy.  This also means I shouldn’t watch 3D movies, play Rock Band with you,  go on roller coasters, or even the Innovation attraction at Disneyland because half of the first floor rotates.  I unfortunately found out how sick the last three on that list make me on one of my trips to Disneyland.  I’m pretty sure I spent more time looking for and sitting on benches at Disneyland than anything else.

One of my favorite pastimes is the many rock concerts I’ve been to.  These are now a very bad idea for several reasons, I’m very sensitive to light and noise now, and they usually expect you to stand around for a few hours.  Standing up for even 20 minutes is difficult enough for me to do.  This makes simple tasks like grocery shopping hell for me.  So if you happen to run into me somewhere, and want to have a long conversation, than find a comfortable place for us to sit.  I’m hoping to go to more concerts, but I will have to stick to the ones that I can sit down in chairs, where people won’t get mad at you for suddenly deciding that you have to sit down in the middle of a crowd and then proceed to black out like I did at a They Might be Giants concert.

Don’t expect me to be a good hostess.  I’m happy to offer you whatever we have in our fridge, but it’s an incredibly bad idea for me to continually get up and down for myself, yet alone for others so make yourself at home.  Also if I have a bunch of people over for movies or games, try not to take offense if I need to disappear into my room for half an hour to recharge so I can come back and spend more time with you.  It’s either that or kick everyone out, and even though it’s exhausting for me I do love and need to be around other people so I would usually prefer you to stick around.

Don’t depend on me.  This one is probably the hardest for me.  I try to be a woman of my word, so when I tell someone I’m going to be there, I do my best to make that happen, but the reality of my illness is that I just don’t know how I’m going to feel hour to hour. Morning are particularly bad for me.  Pretty much lower your expectations if you invite me anywhere before 1pm.  Also, I have become terrible at staying in touch with people.  This doesn’t mean I have forgotten you, or stopped caring, I care quite a lot actually, I just don’t have the energy to express that anymore.  Send me a message, but try not to read too much into it if I don’t respond right away.  You may have just messaged me while I’m sleeping, in a lot of pain, or simply in one of my brain fogs.  I may forget you messaged me, my memory is not what it use to be.  I do love hearing from my friends.  I am very isolated where I am currently at.

I try to make sure I go for short walks every day, but exercise in general makes me feel miserable, so we won’t be going on any hikes or long walks on the beach together.  I hope as I continue to exercise this will improve but even riding a bike is a really bad idea for me.

My three basic needs are lots of rest (being horizontal being the most ideal), lots of fluids, and salt.  After writing this I also realize that I’ve basically become a terrible friend to have.  The girl that would run to your rescue, go for runs regularly, and loved to play in the mosh pit, has now become someone who just really needs a nap, and can maybe watch a movie with you.  You don’t have to tell me I’ve become boring, I’m living this nightmare.   If I am choosing to spend time with you at all, take it as a compliment that I have spent some of my precious little energy with you.   I look forward to trying treatments and getting my life back to roller coaster mode, but until then just think of me as that friend to relax and watch a movie with.

Naturally (or My First Dance with Polyamory

 

Naturally

Enter moment- when devotion
can disintegrate, promises of forever
offered up, that can’t be kept,

passionate sentiments spoken,
-momentarily felt- expectations swollen
but never nurtured,

but you, offer up honesty of
-the moment-you nurture
an expectation of mutual affection,

a more refined way to love.

Let others stand on
their safe cement surfaces,
they always end up cracking anyway.

I will remain in the unknown,
with the softness of the earth
beneath my feet, free to run…
anywhere.

 

I Finally Have Permission To Be Sick

I finally have permission to be sick.  Of course I haven’t been well for over four years, but that doesn’t mean I was able to give myself permission to really take care of myself.

I come from a family of workaholics, most of whom I see as successful and look up to.  I too was burning the candle at both ends before I got ill.  I was working full time, going to school full time, and still managed to have a social life and make time for my family.   I had always been able to do “all the things” and now I can hardly to any of them.  This made me feel very inadequate when I compared myself to my family and my friends.  We’ve always pushed on, and never let anything get in our way, and I felt that I had to keep pushing on even when I knew I was hurting myself.

Having validation from a doctor might seem silly, but I desperately needed it.  All it takes is one doctor to tell you it’s all in your head (and I’ve had at least three of those) to make you question your sanity and the validity of your own feelings.  I never felt like I could surrender and really take care of myself unless someone could fill in the blank as to what was wrong with me.

I can stop feeling guilty about all the extra help I’ve gotten the last several years in school and in my everyday life, which has made me feel like I was cheating in some way.

I have been diagnosed with dysautonomia, also known as postural orthostatic tachycardia syndrome.  My doctor took my heart rate when I was laying down on the exam table and had me sit up and took it again.  I believe he said it was 40 bpm or more, than when I was laying down.  This means my heart rate increases rapidly every time I sit or stand up.  Basically the only time I have relief is when I’m lying down.  When my heart rate increases too rapidly it makes me feel dizzy, and disoriented, and basically I feel this way all the time.

What is really maddening about how long my diagnosis took was that my doctor is one of the doctors that pioneered this diagnosis.  He wrote a paper about it in college.  I think we both got distracted by the adrenal insufficiency, that this option never came up until I brought it up.  I told a friend what my symptoms were, my basic most frustrating symptoms, and she listened and she researched for me.   It’s thanks to my friend Abby who took an interest in helping me find an answer that I have this diagnosis.  She doesn’t have a medical degree, she just listened, and then I was able to take that to my doctor to have it confirmed.  I cried tears of joy when the diagnosis was confirmed.  You never know who is going to have the answers, so never stop listening.

I finally have permission to be sick.  This doesn’t mean that I’m giving up.  It just means I can now take care of myself guilt free, and start building a new life within the limitations that my illness allows.  This is a new beginning for me, one that I am feeling very hopeful about.

I Want Something To Be Wrong

I’m anxiously waiting to go to my Dr’s appointment today.  I’m actually excited, because someone may have helped me figure out what my diagnosis is, and I get to ask my Dr about it today and see if he agrees.  That’s right.  I’m hoping he will find something wrong with me, and then be able to give me an actual diagnosis.  I know most people go to the Dr want to hear the all clear from them, but when you’ve been living with a chronic illness for more than four years, you want them to find something.  You want to know there is a name for the thing you have, that there is possibly a treatment for what you have, and most importantly, validate that you have something and that it’s not all in your head.  It’s actually frustrating when all the test results come back semi normal but you know something is very wrong.  It begins to make you question your sanity.  It’s also extremely frustrating not to be able to explain to people why you’re not ok.  You wonder if they even believe you when your particular illness is invisible.

I’ve also been trying not to give myself too much false hope.  I’ve been to so many different doctors, and left without answers so many times.  I don’t want to leave disappointed again.

I am not ok, and I hope my doctor can help me with a proper diagnosis.  I of course prefer that there is some kind of cure or treatment, but at this point I’m ok if there isn’t.  I just want to know what this is, and if it is likely to remain for the rest of my life so I can plan accordingly.  So here is to another shot in the dark of figuring out what is going on with my health or the lack there of.

A Cycle of Health and Burn Out

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There are allegedly five stages of grief, and many of them are applicable to living with chronic illness, but it is more of a ongoing cycle than stages you work through. Perhaps the same is true of grieving.

The very first stage is denial.  After I almost lost my life to sepsis, I felt pretty awful, but assumed that I would bounce back to my usual highly energetic self.  I returned to work too soon, because I thought that if I could start living my life normally again, that it would it return back to normal.  I even had an ER physician who I worked with, tell me how serious my illness had been, and that it might take up to six months for me to feel better so I needed to be ok with not being ok.  Six months sounded terrible then, and I left frustrated and in tears, because I just wanted my life back.

I waited those six months.   I continued to work even though I frequently felt dizzy, delirious, unstable walking, constantly tired, and much of my life seemed like a blur.  I couldn’t remember important things the day after, and of course my academic life began to suffer because my brain constantly felt like it was in a fog. Reading and writing for long periods became extremely difficult.

After the six months passed, and I still had not recovered, the panic set in.  I began seeing dozens of doctors in attempt to figure out what was wrong with me.  I saw primary care doctors, neurologists, an ENT, an ophthalmologist, and continued to seek the advice from the ER Dr’s that I still worked with occasionally.  Working at the ER as a registration clerk had been one of my favorite jobs until I got sick.  Afterwards I panicked every time I was scheduled there, because I was no longer my calm collected self that accomplished things quickly with a smile.  Stressful situations that I use to thrive now caused mental meltdowns for me.

I went into an intense research mode.  I was determined to do whatever it took to get well.  I racked up doctors bills, read all the info I could get my hands on, was constantly poked and prodded with lab needles, and other instruments, and even had an invasive procedure the lumbar puncture which did permanent damage to my back.

Then I get angry.  This is an unfortunate time for anyone to be around me because almost everything makes me angry.  I’m angry that I’m sick.  I’m angry that I don’t feel like I’m in control of my life.  I get angry with the people who care most about me in life.  The same people ask how I’m doing, knowing that I’m not ok. The sentiment is kind, but it ends up being a constant reminder that I’m not ok. Then there are also the well meaning people that want to help you.  They give me anecdotal evidence, and I’ve received dozens of books, all of which would make me better if I would just take the time to read it.  The worst is the woo that I’m offered.  I’m a skeptic and don’t appreciate quackery, and it is constantly slung at me.  I’m angry that I have to constantly put my life on hold for some unknown.  I only have enough energy to perform one or two of what I now think of as high energy tasks like doing the dishes, or just showing up to one class if I’m in school.  I have to be thoughtful each day about what I choose to do.  I sometimes go over my limit, and every time I do it means taking away energy for future days.  If I want to something that is high cost energy wise, I do it knowing that I will have to assume bed rest for the next several days.   Just getting me to get out of my apartment costs a lot of energy.  Going out with my friend costs quite a lot of energy, and that makes me angry, because I’m very social person.  I get angry with the people who only check in with me when they’re not well, because they currently “understand” what my life must be like, except that they have hope for getting better so they don’t really understand.  I lash out at the people most dear to me, and they put up with it even when they shouldn’t.  Warning to those I love, I’m currently in the anger part of the cycle.

Bargaining is the next step for grief, and I do find myself blaming myself for this. Constantly reliving the week before I got sick and wishing I could take it back, but I really don’t have anything to bargain with.  What really happens next in my cycle is apathy.  My entire life is affected by my health, and when I’m in research mode it is the center of everything, but I get tired of it defining me, so sometimes I refuse to let my life be about my health anymore.  I refuse to make Dr appointments, dismiss books and info people send my way because I don’t want to think about it.  I am less likely to answer a phone call, or listen to music because I don’t want anyone or anything reminding me I’m sick.   This can certainly be self destructive because I am less careful with my time and energy.  I feel small victories when I do things I know I shouldn’t like going out for a night and drinking.  I still pay the consequences, but I’m apathetic to them.

Apathy leads to depression.  I can’t stop crying, and I want to hide away from the world.  I isolate myself which only makes the depression worse.  These are the times I fight the hardest to quiet the suicidal thoughts in my head.  I quiet them by thinking of all the wonderful people that care about me, and the beautiful faces of my nieces and nephew, and how I don’t want to miss out on their lives, even if I am completely miserable.

Acceptance.  This is a recent addition this year to my cycle that I’ve been experiencing for four plus years.  I have to accept that I can’t do most of the things I wanted to with my life.  I have to make more realistic goals.  I wanted a PHD, but have now resigned myself to just trying to get a BA.  Having grandiose ideas and ambitions seem unrealistic to me now.  My dreams have to get smaller. I’m sure many well meaning people would tell me not to give up on my dreams, but if I don’t let go of them, I actually get more depressed knowing how far out of my reach they really are now.  I have to live with what I’ve been given.  I try to enjoy the time I have with friends and family and live one day at a time.

I wish it ended with acceptance, but it’s hard to get over losing your health, so the cycle will begin again with research mode. Inevitably I will get frustrated and move onto the next stage of the cycle.  Hopefully someday I can cut the cycle down to just research and acceptance, but I’m not ready for that yet.  I’m sure other people have had similar experiences, and I’m sure it varies from person to person.  For me every day is a struggle, and will continue to be unless someone can actually find a way of treating this, until then the cycle will continue.

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