Wednesday, May 4, 2016

Kinder and Gentler

Today I watched a TED Talk titled The Power of Vulnerability by Brené Brown. I love Brené's work around shame and vulnerability but something completely different struck me today.  This part of the talk hit me like a ton of bricks:

"
You can't numb those hard feelings without numbing the other affects, our emotions. You cannot selectively numb. So when we numb those, we numb joy, we numb gratitude, we numb happiness."

I realized I am numb at the moment.  Truly numb.  Not due to shame or vulnerability but due to my fatigue and illness.  I think for the time being it is my coping mechanism.  I am not in a good place and haven’t been for some time.  I write anytime I feel my emotions taking over but the emotions are always there, just below the surface and too painful to truly bear.  That line in Brené’s talk brought to my attention the fact that although I am able to fairly regularly keep those hard feelings at bay most days…that also means I am missing out on the good emotions.

For the last few months, I have not felt joy.  I guard myself very tightly and don’t let myself feel much of anything.  I have been operating with a very cold exterior, not letting anyone or anything in.  Now, I understand.  When you numb those hard feelings, you also numb the good ones. 

I’m not sure anything can change in the short term because the hard feelings are still too hard but now, I at least understand why I'm not feeling the good things either.

The last thing Brené says is this:

And the last, which I think is probably the most important, is to believe that we're enough.Because when we work from a place, I believe, that says, "I'm enough" ... then we stop screaming and start listening, we're kinder and gentler to the people around us, and we're kinder and gentler to ourselves.


As long as I am sick, I don’t think I will ever feel like “I’m enough” but I do hope that I can someday start being kinder and gentler with myself so that I can be kinder and gentler to those around me.

Tuesday, May 3, 2016

Is Today the Day?

Is today the day?  That was my very first thought when the alarm went off this morning.  Is today the day that I crack?  The day that I go over the edge and don’t come back?  The day that I curl up in the fetal position and completely give up? 

There wasn’t anything really different about today.  It’s only Tuesday so it hasn’t been a long, hard week.  I had lots of down time this past weekend so I’m not trying to recover from a busy one.  I haven’t been sick so I’m not fighting additional illness.  I’m a little stressed because the next three weeks are incredibly busy and I’m worried about making it through but that’s nothing I haven’t dealt with before. 

Still, the conversation that went through my head went something like this:

I can’t do it.  I simply can’t.  I can’t move.  Everything hurts.  I just want to lay here forever.  No.  I don’t want to lay HERE forever.  I want to go someplace beautiful.  I want to go the beach.  Can I make the drive to the coast, rent a cute little bungalow on the beach and just lay in bed staring at the waves until I drift off into neverland? No.  You need to get up.  You can do it.  Just move.  Once you start moving, things won’t look so bad.  Just get out of bed.  You don’t have to go farther than that.  Just stand up. I can’t stand up.  I can’t “just” stand up.  More things need to come after that and I can’t do them.  Yes you can.  You can make it through today.  You are strong.  You can do it.  Sure, I can make it through today but what about tomorrow? What about the next day?  Feeling like this day after day after day after day is just. too. much. I have done it.  I have fought the good fight.  I don’t see an end in sight. Now, I just want to lay here forever and never move again.  Everyone will be better off.  I’m making mistakes at work because my mind is foggy.  I’m not present for the kids because I’m exhausted.  I’m snapping at my husband because I’m in pain.  I’m a terrible friend because I don’t have the energy to do anything for them, ever.  I’m a terrible daughter/sister because everyone has to be concerned about me all the time.  No.  You’re not. Stop beating yourself up. This is not helping anything.  GET YOUR BUTT UP!  Get moving.  Today is not the day. Today is not the day you will break. Today is not the day you throw your hands up and let this illness win.  Today is not the day you choose to be weak.  Today is not the day that will break you.  Today is not the day. 











Okay. Today is not the day.      

Saturday, April 9, 2016

Elusive Hope

I've needed to write for awhile now but I just haven't been able to.  There is so much I want to say, so much I want to share but I just can't seem to find the words.  I want so badly for people to understand what it's like to suffer through Chronic Fatigue Syndrome (or whatever name you want to put to this debilitating condition) but at the same time, I want to keep my walls up and ensure that that part of my life stays tucked away.  Hands down, one of the hardest parts of living with CFS is the mental side.  If I'm not careful, I feel like it will take me down from the inside out.  In my healthy moments, I intellectually understand the dark places but in the midst of my fatigue, there are no rational thoughts.

First, I'd like to start by talking about how completely inaccurate the term Chronic Fatigue Syndrome is.  It makes it sound like I'm just tired all of the time.  EVERYONE is tired all of the time.  I think a more accurate term would be Chronic Illness Syndrome.  You see, with the debilitating fatigue that CFS brings comes a whole host of other problems that are not at all accurately described by the term "fatigue".  Perhaps it would be helpful to try and explain what a "crash" looks like.  A "crash" is a common way of referring to the myriad of things that happen when someone with CFS over exerts themselves.  A crash for me, in the best of circumstances means I feel like I'm getting the flu. My throat hurts, my body aches, I'm exhausted, I'm nauseous, I will sometimes get a fever or at least chills, my lymph nodes swell up (often to the point where I can feel them in my neck, underarms and even in the back of my knees), and, yes, I get very, very tired as well but it's not a sleep-deprived feeling but rather a feeling of utter physical exhaustion.

In the worst of circumstances, a crash means I can't physically function.  I feel like my body weighs a thousand pounds and even rolling over in bed is nearly insurmountable.  Breathing takes effort.  Blinking my eyes takes effort.  I sit or lay and stare into space, too exhausted to even sleep.  My fatigue isn't about needing more sleep, it's a physical fatigue that impacts my entire body and often times, I hurt too much to fall asleep.

I am incredibly good at timing my crashes.  I have learned over the years exactly how far I can push my body before I crash and I have perfected the ability to time my crashes so that people (including my husband) don't see me crash and my crashes don't impact my daily activities.  For me, that has helped to hide my illness and has helped keep my sanity in tact.  Crashes are embarrassing.  They are pathetic.  Barely being able to move for no reason at all is devastating.  Trying to explain what is happening to anyone around to witness...is humiliating.  I have no control over my physical condition but timing my crashes so no one sees, has helped to maintain some sense of control for me.

The older I get, the harder I work, the longer I commute, the more active my kids are, the harder it has become to time my crashes.  This past December we spent a week in Tahoe with some friends, celebrated Christmas for two days with family and spent another week in Newport Beach with friends/family.  That on the heels of a couple of very long weeks at work, was all too much.  I tried very hard not to crash but I couldn't push myself any harder and I did.  I wrote about that in my last post.

What I haven't been able to fully write about is the incredibly dark moments I experience in the midst of fatigue.  I can't tell you the number of letters I've written in my head to my family and friends saying goodbye and trying to explain to them why I no longer want to live.  Intellectually, I understand that I have a blessed life.  I know that even among those who suffer from CFS, I am one of the lucky ones.  I am able to work full-time and spend more time OUT of bed than IN bed.  I understand that I have an amazing family and support system and am not alone in my fight.  I understand that even suffering through fatigue and illness, I have a better life than many, many people have.  I understand that many people don't have the choice whether to live or die and that other illnesses rob people of time with loved ones in unimaginable ways.

But in those dark moments when I'm too tired to even move, intellectual understanding goes out the window and all I feel is pain, sadness and despair.  I can't see past the next second much less the next day when I know I will feel better.  All I can think about is the day to day suffering....the constant worrying and planning for how much activity I can sustain before I go down.  The thoughts that consume me are the ones that remind me how much I've lost.  How many hours I've spent in bed when I could have been doing other things.  How many mornings I dragged myself out of bed with all consuming thoughts of when I can crawl back in.  How many moments of my children's lives I have missed because I was too tired to move.  How many times I've snapped at them or robbed them of precious moments because I was ill.  How much time I've spent calculating out how much longer I can push myself instead of enjoying the activity in front of me.  How many times I tried to pretend that I was just lazy and wanted to "relax" when truth be told, I couldn't fathom the thought of moving past my bedroom that day.

In my healthy moments I can't imagine not living my life...not seeing my children grow up...not growing old with the love of my life.  But I have to climb out of the illness in order to see clearly and think rationally.  Every time I go down, I wonder if it's worth it.  I wonder if the day-to-day struggle and the recent realization that I may never be healthy again, will be the end of me or if rationality will win over and I will continue to survive.  Hope is fleeting and I can't seem to keep it in my grasp for any length of time.  It comes and goes.  It used to be what I tried to hold onto and now it's what I try to reach out to.  It regularly slips through my fingers and leaves me gasping for breath.

As elusive as hope seems to be for me at the moment...the truth is I will leave this blog post and go and cook dinner for my kids, join them for a movie and they will have no idea the utter despair I feel in those moments of fatigue.  I will get up very early tomorrow morning and take my son 2 hours away for an all-day football tournament.  I will work all week at a very demanding job and fight through the urge to simply give up.  I will spend all next weekend in bed avoiding a true crash but ensuring I have enough strength to make it through the following week.  I will interact with friends, family and co-workers daily and no one will suspect that despair over takes me on a regular basis.  No one will understand that underneath my daily facade, I hurt in ways that makes me question my will to live.

Luckily, I have been at this long enough to know that those moments of desperation are as fleeting as the elusive hope I seek to hold onto.  I understand that those dark moments will dissipate and I will move forward into the light.  I am confident in my ability to keep pushing forward despite the irrational thoughts that invade my fatigued brain. Having written that...I step back and think...perhaps hope isn't that elusive after all.

Tuesday, January 5, 2016

You don't understand...

Over the years, it has become more and more apparent that you just don’t understand.  For a short period of time, I thought maybe you did.  When you tell me to go sit down and relax instead of helping with dishes, when you pull WAY more than your weight around the house and when you encourage my lazy days rather than being resentful…you fool me into thinking you truly understand.  But you don’t.  It’s okay though. I get it.  How in the world could you possibly understand unless you live in my body?  How can you understand when I hide so much of myself from you?  How would you know when, truth-be-told, I spend a tremendous amount of effort to KEEP you from understanding?  So, this post is for you.  This post is for all of you who don’t live in a body that has betrayed you.  This post is an attempt to give you a brief glimpse into the despair and desperation that goes on in my head when I’m “exhausted”.

First, let me start by saying that the month of December started off badly after finding out that my recent round of bloodwork showed a backward slide.  My titers for all 5 viruses were positive and higher than before.  My Epstein Barr Virus titers were particularly troubling.  The doctor suggested that because the acyclovir/colchicine combo I’m taking is not targeting that virus, we should consider switching to Valcyte.  Valcyte is what they call “the big guns” but comes with numerous potential side effects including causing cancer in mice and the potential to cause long-term liver and kidney damage.  It would mean many more doctor appointments and bloodwork more often to stay ahead of the potentially damaging side effects.  It scares me.  After a lengthy discussion with the doctor, we decided to switch to another medication in the same family as the acyclovir and perhaps add in one other medication in January.  We’ll try that for a few months and then reassess the Valcyte after that.  I left the appointment with a deep sense of sadness about my future but I couldn’t share that with you.  How do I tell you that what we hoped was the “cure” isn’t working?  How do I tell you that my illness will continue to cost us endless amounts of money?  How do I tell you that the potential side effects of the next level of medications may be worse than the illness itself? How do I tell you that despite all the hope I had going into this latest round of treatment, I am continuing to slide backwards?  How can I tell you that I have hit yet another dead end in the enormous pile of things I have tried over the years? How do I tell you that we only have one hope left..."the big guns" and if that doesn't work...it's the end of the line? How can I tell you all of that when I can’t even admit it to myself?

The few weeks after my appointment were incredibly trying for me as I worked long hours attending both morning and evening work events.  Add in the fog and rain that made my commute even longer and more stressful and the pre-Christmas preparations…I was already burning the candle at both ends.  I pushed through the last work day running at warp speed trying to get everything done to be able to leave one day earlier than we had originally planned.  I wanted to give you that extra day of vacation…you deserved it.  Unfortunately, the stress of trying to finish up work only added to my swelling fatigue.  We spent what I’m sure you think was 6 days of total rest and relaxation in Tahoe as you did all the work and I rarely got out of my pajamas and only left the house once or twice.  Unfortunately, it doesn’t work that way for me and I couldn’t explain that to you.  I shed tears more than once on that vacation, behind closed doors, as my emotions bubbled to the surface anytime I thought about the fact that I was doing absolutely nothing because I HAD to…not because I WANTED to.

We came home to a whirlwind two days of Christmas festivities but I was hanging in there.  On the 26th, I slept in and felt confident I was ready to finish all the chores necessary to head out on our 8 day trip in the trailer.  I was wrong.  With that last laundry basket loaded with kitchen utensils/food sitting on the counter….I willed myself to just pick it up and carry it to the trailer but nothing happened.  My body suddenly felt incredibly heavy and I was so nauseous.  All I wanted to do was lay down…right there on the floor.  Tears began to drip out of my eyes at the realization that such a simple task of picking up a basket and walking 20 yards felt nearly impossible.  When you found me lying down in bed you couldn’t possibly understand what I was going through when you encouraged me to quickly get up so we could leave.  And, of course, I didn’t try to tell you.  I absolutely did not want you to know.

Over the next six hours of travel in the car, I thought non-stop about how and when to rest.  My daily life is one of constant planning for when and how much activity I will do.  It’s all I think about.  What days can I sleep in?  Which days can I miss work if I have to?  Which meetings absolutely can’t be missed?  Do I really have to wash my hair today?  If I crash today, will it be okay?  Can I push through and crash tomorrow instead? How many late nights do I have?  How many early mornings? Unfortunately, that worry and planning doesn’t stop on vacation.  Knowing I was pushing myself too hard and about to crash if I wasn’t careful, I thought about the week ahead and I was scared that it would all be too much. We didn’t have a lot planned but when you are exhausted…just getting up in the morning seems insurmountable. I didn’t tell you how scared I was...instead, my fuse got short and I snapped at you.  What you didn’t know is that I was angry with you for not understanding what I was going through and angry with myself for not being able to tell you.

Over the next few days, I tried to rest as much as possible…going to bed before everyone else, getting up late, laying around and doing nothing all day rather than going to the beach or taking the dogs for walks.  Even though I was doing next to nothing, I could feel myself getting more and more fatigued and I got more and more mad.  I wasn’t doing anything…how could I be so tired?!  I could feel a crash coming on but I was bound and determined to keep it at bay.  A crash is pathetic.  It’s embarrassing.  I didn’t want you or anyone else to see my like that.  In nearly every instance, I am able to time my crashes so that they happen when you are working.  I can usually get enough rest so that I can keep going until you are at work.  This time was different.  I felt exposed and completely out of control and it made me angry. 

That anger turned to total and utter despair as I began to crash.  I’ve said it before, “Everything is worse when you don’t feel well.”  I got so frustrated with myself that I couldn’t just push through, overcome, rally…like I always do.  I had hit my wall one too many times.  The tears were a reaction to my physical state.   When I crash…it’s not just fatigue.  The best way I can explain it is that it is similar to a very bad flu.  My entire body aches….to the point that I become painfully aware of parts of my body I don’t necessarily even think about like the skin under my arms or the spaces between the bones in my hands.  My skin burns and my legs hurt so bad I can’t stop moving them.  I feel like I have golf balls in my groin, neck, under my arms and behind my knees.  Did you know you have lymnh nodes behind your knees?  I do…because they swell up when I am not feeling well and hurt like crazy.  My knees feel like softballs connected to pieces of wood and like they are rubbing against one another with every movement. The only thing that helps is massaging them so hard that I create a different sort of pain.  I get incredibly nauseous and feel like I weigh a thousand pounds.  I get incredibly irritable because I hurt.  Rolling over in bed takes a tremendous amount of effort and is painful.  I hurt to the point where it’s even painful to just lay down, which means I don’t get good rest, which means I don’t heal, which means I get even sicker. 

Even worse than the physical symptoms of a crash are the overwhelming emotions that come with it.  The overwhelming frustration I feel about being exhausted (for absolutely no reason!) leads to anger and feelings of despair.  The sobs you heard were the sounds of hope leaving my body and recognition of all I’ve lost.  The healthiest and most active years of my life lost to illness and fatigue.  The years of being able to play with my kids and give them the attention they deserved…lost to illness and fatigue.  My plans to be a healthy, active woman who can keep up with her healthy active husband…lost to illness and fatigue.  In my future, all I can see is me laying on the couch watching you head off to the gym, out to the slopes, over to the golf course or on to the lake.  It hit me that best case scenario is me holding you back and worst case scenario is you enjoying an active life without me.  Both suck.  Intellectually, I know that if the roles were reversed, I’d be all in and stand by you no matter what and I know you’ll do the same for me.  But my heart breaks in acknowledgment of that sacrifice…for both of us.    

Now that a couple of days have passed and I’ve gotten some good rest, I’m slowly bouncing back.  I am coming out of the depression and doing my best to harness a bit of hope.  However, it doesn’t diminish how difficult those low moments are for me or make them any less real.  Another crash will come again and that’s for certain.  It’s just a matter of when and how long and it’s a daily battle between what I want to do and what I can do.  When that crash happens….all I need is a good hug and someone to tell me everything will be okay even if neither one of us believes it’s true.  

Saturday, December 12, 2015

The healthiest years of my life are behind me....

Sometimes when I sit down to write it’s because I have a ton of things in my head that I want to get out.  I know exactly what I’m going to write before I even touch the keyboard. Today is different.  Today, I have no idea what I’m going to write.  In fact, I’m terrified of what might actually come out once I start.  I just know I need to do it.  As I’ve explained before, writing is therapy for me and boy do I need some therapy right now.

I’ve been on the verge of tears or have broken down so many times over the last several months.  The frustration and sadness are growing into insurmountable barriers for me.  My head has been a swirling chaos of heartache and anger and it’s so difficult to clearly articulate what it is all about.  I can start by saying that…I’m getting older.  As such, my body is breaking down even more.  My husband and my friends are all starting to experience the aches and pains of growing older….normal aches and pains of growing older.  We joke about them as getting older is an inevitable part of life but the symptoms are all too real. 

The most difficult part for me is that I have always had this end goal…health. Since I was 18 years old, I’ve naively thought that someday I would be healthy.  Someday, we’d figure out what was wrong with me and I’d be healed.  I pushed through the hard times knowing that someday they would be behind me.  Recently, I’ve begun to realize that even if that elusive cure ever comes to fruition, the healthiest years of my life are behind me.  I missed them.  Health now would come at a time in my life when the body begins to age naturally.  And the damage that has been done to my body means that my remaining years will be full of pain and fatigue regardless of whether or not I’m suffering from Chronic Fatigue Syndrome.  We can’t reverse 25 years worth of physical stress on the body.  My muscles, my tissue, my joints, have all suffered irreversible damage and health now can only mean less pain and less fatigue but will never mean a return to a full and vibrant life.

The sad part for me is that there really is no incentive to push through the difficult times and hope for a better future.  There is no reason to think that I will ever have a life where I don’t get out of breath washing my hair or go over the week in my head worrying about the amount of things I need to do and whether or not I will make it through without crashing.  There is no reason to hope that my retirement will be anything but lying around the house all day watching TV and constantly feeling guilty for not having the energy to do the things I think I should be doing.

I have the most amazing husband who picks up so much of the slack around the house.  My heart breaks every time I think about the kind of person he should be married to.  He’s healthy, active, and energetic.  He should have a spouse who can mirror that.  I picture us in our retirement years…him out doing things and resenting me for not going with him.  It’s not what I want for either of us.  Sometimes, I think I pick fights with him just so that he’ll get made enough to leave and go and live the long, happy, active life he deserves rather than the one where he gets to take care of his pathetic wife.

Today, the low point of my day was when I looked around the house and thought about all of the cleaning that needed to be done and all of the decorating I wanted to do.  We have a decorated tree and mantel thanks to my daughter.  The miniature Christmas village and the fake snow that normally adorns the hallway is still packed away.  The thousands of Christmas lights that have lined the house or the driveway or wrapped around 11+ palm trees have not seen the light of day.  There are at least 4 bins full of decorations that I just can’t bring in the house.

Don’t get me wrong. I NEVER feel up to decorating.  I’m ALWAYS tired.  BUT every year…I find the strength to push myself more and do more.  There’s a little spark in me that thinks “I can do it”.  Somewhere, deep down, there’s hope that this will be the last Christmas I feel like this so I can garner the strength to push through.  Not this year.  I have no more hope for a better future.  This is my life.  This on-the-verge-of-getting-the-flu feeling I have every day is my normal and will never go away.  I won’t feel better tomorrow or the next day or the day after that.  In fact, if I push through…I will more than likely end up flat on my back for several days.  I’m no longer naïve.  I’m actually too smart for my own good.

I need to rest.  I have a sore throat and a cough and if I push to hard I will end up very sick.  I can’t afford to be sick.  I have a very busy week at work and then we leave out of town on vacation.  I know every single thing I am doing for the next three weeks because I have to plan ahead and make sure I don’t crash in the middle of something critical.

My new job and the commute take a huge toll on my body and that means many other things have to go by the wayside.  I just don’t have the strength.  My doctor at Stanford is quite surprised I can even do what I’m doing.  My recent blood work came back showing that I have five active viruses and my titers are way up…particularly for the Epstein Barr and Cytomegaloviruses.  The medication is no longer suppressing the viruses, which means my immune system is severely compromised and my body spends all of its energy fighting itself. 


The doctor wants me to start the Valcyte, which is the medicine that has a number of side effects and can cause kidney and liver damage and has caused cancer in mice.  I’m scared to do that but maybe not for the reasons you might think.  I think I opted to switch to a medicine in the same family of what I’ve been taking and not jump to what the doctor refers to as “the big guns” because I know the Valcyte is the end of the road.  I’m already so low on hope but at least I feel like I have one more step I can take.  If I jump there now and it doesn’t work, I will surely spiral into a very dark place. 

Sunday, October 25, 2015

No Idea How This Is Going to Go...

Today, I know I need to write but I'm not really sure what I need to write about.  I'm starting to move into depression and I know what a dangerous road that is.  I just don't really know what to share here.

I'm miserable.  Let's start with that.  I got really sick in January of this year and it lasted for over a month.  I spent the next 5 months trying to bounce back.  I spent every weekend sleeping or laying on the couch in an attempt to regain my strength.  In June, I took a two week vacation and had hoped that would help as well.  On the second to last day of my vacation, I was feeling a bit distant from my husband and a little guilty for wanting to just sleep all day so I pushed myself into going for a long walk.  A walk.  Not a hike or a run...but just a walk.  But I was tired and on days like that..."just a walk" can put my body over the age.  It did.  I could feel it but I pushed through and then had to push through the next day for the trip home and the two days after that as I returned to work.  So much for recovering.

Over the last several months, I've been surviving.  Working long days and attending kids' activities during the week and then sleeping and laying around all weekend.  Trying so hard not to push myself too far.  About a month ago, instead of sleeping and laying around all weekend, I took a trip with a friend.  Although, we didn't do a lot of physical activity, just the trip itself pushed my body too far.  I got a head cold that turned into a flu that turned into a chest cold.  For the last four weeks, I've been barely surviving again.  I think all of that has led me to realize that my future is very bleak.  All I can see for the next 10 years is me working very hard during the week and then sleeping and laying around all weekend and the thought of that sucks.

I work through my illness for many reasons...money for kids' college, vacations, retirement, etc. and because I think I would shrivel up and die if I didn't HAVE to get out of bed in the morning.  BUT now it just feels as if work is killing me and by the time I get to retirement or the kids go off to college, I won't be around to see it.  I'm not trying to be morbid but I honestly don't believe I will live much longer and if I do, it will be a slow, agonizing, painful daily step towards death.  I am already an old woman.  I got out of breath folding and hanging up a load of clothes today.  Pathetic.

I used to naively believe someday I would be fine.  Someday, I would find the right pill, the right diet, the right combination of treatments and I would return to a normal, healthy, young woman.  I no longer believe that.  In fact, I have zero hope that I will ever recover more than I am right now...my only hope is that I won't slip further backward.  It's so hard when you start losing hope because that's when depression sits in.  But I can no longer envision a happy retirement paddleboarding or doing yoga.  Instead, I envision pain-filled days where all I want to do is sleep because I spent the healthiest years of my life working myself to death.  12-14 hour days commuting and working followed by 3-4 hours of kids' sporting events pushes my body entirely too far each week.  But I don't know what to do.  Quit work?  I lose my retirement, my health insurance when I retire and the money that we are putting aside for the kids' college.  It feels like a zero sum game to me.

Thursday, May 28, 2015

#TooPainful

I have had so many people contact me since my last post.  I guess either the F word or my willingness to be vulnerable really resonated with people.  I had several people share their own struggles with illness and fatigue and mention the guilt they feel around the impact on their kids.  I just felt compelled to say that this is a place I just can't go.  When I think of the lost time and how profoundly different of a parent I might be without this struggle...it is simply too painful.  I can't talk about the number of times I convinced my kids that mom laying on the couch was really part of the game or watched them from afar wishing I could engage in the activity or told them I needed them to step up and take care of themselves or asked my daughter to take care of her brother because I didn't feel well. I can't talk about it or write about it or even think about it.  #TooPainful

Wednesday, May 27, 2015

I'm F*ing Tired!

First, let me apologize to those who are offended by foul language (like I usually am!).  I always tell my kids that saying the F word is not okay and honestly, I don't understand why people insist on having it as part of their vocabulary.  I mean...I get it when you suddenly get angry or make a mistake or hurt yourself and it pops out of your mouth before you realize it but I don't believe you should ever consciously choose to say it and certainly NEVER, EVER write it.  Well, I'm going to break my own rules.  I can't bring myself to actually spell out the whole F word but writing F*ing is definitely a reflection of just how pissed off I am at the moment.

I am so mad I can barely function and I can't remember ever being this angry.  The weird thing is...I'm not exactly sure why I'm angry and that's why I'm writing.  If I don't write, I'm afraid the anger will destroy me from the inside out.

I am just so f*ing tired and so f*ing tired of being tired.  I was reading this site the other day (http://solvecfs.org/) and the author posed the question, "If there was one thing you wanted people to know about CFS what would it be?"  I wrote: "I feel like I have the flu or am on the verge of getting the flu every. single. day."  OMG.  That sucks.  I mean seriously sucks.  Seriously, f*ing sucks.

For the past 25+ years...I have felt like like crap every day.  Okay...I may be blowing this a tiny bit out of portion as I'm sure I have had days where I didn't feel like I was sick but honestly, I can't remember any of those days.  And let's just err on the cautious side and say half of those days sucked and the rest were good (although I know it's nowhere near that ratio)...that's 12.5 years of sucky days or over 4,000 days where I felt like lying down rather than standing up.  Pathetic...that's what that is....f*ing pathetic.

I know there are people out there who read this and think to themselves, "It can't be all that bad.  She doesn't look sick." or "She doesn't act sick." F you!  That's right F you!  Because let me tell you the other thing I'm f*ing tired of...pretending!  Yes.  I'm an impostor.  An actor.  A big fat f*ing fibber.  You know why?  Because if I say to you, "I'm tired"...you say, "Yeah, I get it.  I'm tired, too."  And then I would have to say F you!  You have no idea what tired means.  Or if I say to you, "I don't feel well."  Then the next day you'll ask me, "Are you feeling better?" and I HAVE to lie and say, "Yes" because the only other alternative is to say,  "NO...hell to the f*ing NO." every single day for the rest of my life.  And if I did that...you'd hate me and let's be honest, I'd hate me, too.  I want to feel better and I don't ever want you to know that I feel awful most of the time...so I pretend.  I also pretend because if I didn't I would stay in bed all day, every day.  Have you ever heard the phrase "fake it, 'till you make it"?  Yeah, well I'm the master of it!

I also pretend because if you really knew what I was going through...you would want to help.  You would want to offer an alternative medicine type of solution that you read about or a diet that your friend who was tired all of the time tried and is now a ball of energy.  You would tell me more exercise might help or ask me if I've tried herbs to help me sleep or acupuncture for the achiness or stretches or blah blah blah blah blah.  And then I would have to say F you because you have no idea all of the things I've tried and all the times I got my hopes up that I could heal myself.  F the doctors.  They don't know crap so I'll solve this myself. Well, guess what? You don't know f*ing crap either.

I've been doing this for a very long time so I'm not sure why this is all getting to me again, right now.  I'm not on a downhill slope...in fact, I feel probably the best I've ever felt thanks to the meds prescribed by the Chronic Fatigue Clinic at Stanford.  But I'm not cured...not by any means.  Don't get me wrong, I don't think I every truly believed I'd get a magic bullet and suddenly feel better but maybe I let my hopes rise higher than I should have.

I think the absolute worst part for me is the terrible, forever side-effects that Chronic Fatigue has brought.  Every time I go to Stanford, they ask me how I'm doing mentally because you know it's not bad enough that CFS makes you physically feel like crap all the time but it also messes with your head.  Turns out all kinds of wonderful things happen when you are rested and much of that happens in your brain.  CFS doesn't allow those healing things to happen and thus f*s up your brain as well as the rest of your body. Fun stuff.  Up until now, I have felt pretty lucky that I didn't have that many problems in this area.  Well, turns out...I overestimated myself!  I took a new job in January of this year and although I still want to be the person who deserves the title of "smartest person I've ever worked for" that a former employee gave me and still feel like I analyze things well and am a thoughtful problem-solver...I can't f*ing remember anything.  Seriously.  I have to write down everything and even then...it's hit or miss on whether or not I will remember where I wrote it.  Turns out working at the same job for over 15 years hid a lot of clues to my lost brain function.  Sometimes my boss looks at me and I know he's thinking, "I can't believe you don't remember that" and I just want to scream, "I KNOW! I CAN'T BELIEVE I DON'T REMEMBER THAT EITHER. Wait.  What were we talking about?!"

And don't even get me started on the muscle tone and strength I have lost.  Two torn calves from doing virtually nothing.  That's right, folks.  Heaven forbid I actually exert myself beyond yoga or dancing at a party...my muscles surely wouldn't survive.  Apparently, it's the inflammation.  My body is riddled with inflammation that doesn't seem to want to go away. When my husband talks about our retirement years and how we should live somewhere that will allow us to do some sort of outdoor physical activity everyday, I want to yell out WTF?!  I can barely do physical activity now without major ramifications and you think when I'm f*ing 50+ years old...I'll be able to do it every day?!  And when I must be showing on my face what I'm thinking...and he says, "What? You don't think we'll be active when we retire?" Clearly, I have pretended far too well.  I just want to cry.  Cry because I don't want to ruin his retirement.  Cry because I'm not ready to admit defeat.  Cry because this f*ing sucks.

I think the worse part is that I don't ever want to talk about this.  It's pathetic.  Seriously f*ing pathetic.  Talking about it makes me feel weak.  I don't want to feel weak.  I will pretend to the enth degree because I don't want people who don't understand to judge me and I don't want people who do understand to pity me.  Mostly, I don't want to admit how bad it sucks because that weight is unbearable.  Recently, I was feeling totally overwhelmed by it all and felt a very strong need to connect with someone about it and just be honest for once with how I was feeling and how it permeates every part of my being.  I chose someone very close to me and just admitted that I wasn't sure how long I could continue with my new job.  The commute, the hours, the pace...it was taking it's toll on me and I was scared that I wouldn't be able to manage long-term. I felt like I had been pushing through by crashing every weekend but that wasn't how I wanted to live and wasn't even sure it was sustainable. I felt like I needed to do something...I just wasn't sure what that was.  This person looked at me and said, "Just let your boss know.  It's not like it's a serious illness and it's not going to go on forever."  I am certain I looked stunned because he quickly tried to back pedal and said, "I just meant it's not like it's lupus or something like that."

I'm thinking that last comment is what finally tipped me over the edge. You have no f*ing idea.  Worst part is...I am too f*ing tired to explain it to you.

Thursday, June 12, 2014

So Far, So Good....

I just returned from yet another doctor's appointment and realized I need to continue to document!

My doctor at Stanford is not able to provide a prescription for my thyroid medications (as I've mentioned before, their research is very narrowly focused).  As a result, I had to head back up to Sacramento for an appointment at the Fibromyalgia Treatment and Learning Center (http://www.fmtlc.com/index.html).

I have not had an appointment there since I started treatment at Stanford and was honestly quite worried about what that would mean.  I've seen doctors in the past get very territorial about their treatment and feel threatened when I am working with other doctors at the same time.  Luckily, I had nothing to worry about!

Dr. Powell and his PA, Michael, are the epitome of cutting-edge doctors. They research, research, research and more importantly, learn from their patients AND other doctors.  Michael was not only NOT threatened by my treatment at Stanford but was genuinely excited by the research and happy for the progress I am making.

What I really LOVE about their treatment protocol is that it is holistic and long-term.  They are not at all interested in treating the symptoms or even suppressing things...they are determined to eradicate this condition by looking at it from every angle, even when that complicates things.

Michael agreed that Dr. Montoya's work with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative have to be very focused in their research in order for that research to be respected and that their findings can take YEARS and YEARS and YEARS to be realized.  He is grateful for that research on behalf of future generations who may beneift but the goal of the Fibromyalgia Treatment and Learning Center is to help patients NOW.  To that end, they are constantly learning and implementing what they learn in hopes that they can help people while the medical research is working itself out.  I LOVE this!

Yesterday was one of the first doctor's appointments I have had where I haven't walked out feeling like I wanted to burst in to tears...either because of terrible treatment, archaic theories and protocols or because the road ahead seemed long and treacherous.  The only time I even teared up was when Michael explained that although, I may be able to stop taking thyroid meds someday....there really is no "end" to this condition.  He tells me that I should not look at this as a hill I am climbing and that one day I will reach the top, the heavens will open up, the angels will sing and all will be well.  But rather, I should just hope to make progress.  That was a little disappointing to hear because sometimes the only way you can make it through the tough times is to hope that you are getting through it because you are on your way to total wellness. 

All in all, the appointment was hopeful and positive though and I'm happy to report that so far, so good!

Sunday, May 18, 2014

Fingers Crossed...

Following is a post I typed over a month ago but chose not to post because it was just too depressing:

"Crashing...

People are sometimes surprised to find out that I can participate in physically exhausting activities and can make it through physically exhausting days.  I think it is one of the things that makes this condition so difficult to manage.  People see you active and assume that you are fine or see you active and think, "Well, I'd be tired if I did that, too."  What people don't understand, and what that I've come to understand, is that the fatigue I experience is probably quite different from their own experience with fatigue.

I can actually go and go and go and push myself to participate in physically exhausting activities and days...the problem is...I will eventually "crash". I don't always know when it will come or how long the crash will last but I do know that it will always come.  This week I went on a very active vacation with my family. I knew it would take a lot out of me and I knew I would eventually crash but I was hoping against hope that the new meds would somehow make it better or prevent it from happening altogether.  Well, I was wrong.

After three busy and tiring days, I am no longer able to move. I am dragging myself here to type so that I can capture what a crash feels like and try to explain.  A crash is when you are staying in a beautiful house just steps from the beach yet can't find the strength to walk to the sand.  A crash is when your husband and kids travel off to play in the ocean and all you can do is watch them go. A crash is overwhelming, debilitating, suffocating, relentless fatigue.  This is a crash."

Following is a cut and paste from an email I sent to my doctor at Stanford a coupe of days ago:

"When I left our last appointment, I told you I'd email you after my busy vacation to let you know how I did.  It's been almost 4 weeks and I haven't written anything to you so I thought I should at least say something!  To refresh your memory since I know you see a lot of patients, my appointment with you was on Monday April 19th and I had been taking the Colcrys twice per day three days at that point. 

We were off and running on our vacation by 5:30am the next day.  We hit Magic Mountain and then toured UCLA, the NFL network, San Diego State University and UC San Diego over a period of three very long days.  There was lots of walking, strange hotels, early mornings and late nights.  I can't lie...I was EXHAUSTED.  I actually sat down and cried at Magic Mountain the very first day because I was so disappointed in how tired I was at that point and it was only the first day! I couldn't imagine making it through the rest of the week and knew if I did...I would be very ill afterwords. (I did stop taking the Colcrys the first day of the vacation because I couldn't handle the side effects while away from home.)

I pushed through those first three days fully expecting a major crash.  On the fourth and fifth day of the trip, I spent a lot of time laying in bed and watching everyone else play on the beach (luckily, my room had a view of the beach!).  I took a couple of short walks but other than that, never left the house we were staying in. However, I didn't feel terrible...just tired.  We got up on the sixth day and made the long drive home hoping for a good night's sleep since it was back to work for me the next day.  Honestly, I expected to have to call in sick at least one day that week and/or work some shorter days.  To my surprise...I did not!

I restarted the Colcrys on the Sunday evening we returned home and continued to take it throughout the week and was up to two per day by Thursday of that week as the side effects subsided.  I worked a full week after our return from vacation and actually felt the best I have ever felt in my life on the Saturday following that work week!  I got up early that morning and cleaned house (true Spring cleaning) top to bottom and then moved to the outside because I was feeling so good.  I kept moving until about 3pm expecting that when I sat down, I would not be able to get up.  Not true!  I got up after an hour and didn't hit bed until after 11pm.  I was a little tired the next day but not bad at all. 

Since that time, I've continued to do well.  Honestly, I think I haven't written to you because I'm still a bit afraid it will end tomorrow and I'll crash. But so far, so good.  I'm still periodically tired throughout the week but I think it's normal tired....tired because I'm a busy working mom!  It's not the overwhelming, debilitating, relentless fatigue that I normally experience.  And, I don't feel nauseous in the mornings, my neck is not as sore, my throat isn't hurting and I feel stronger.  I went back to yoga one time per week for the last three weeks and it feels good. 

I am cautiously optimistic because I've been through this before where things were great for a period of time and then didn't last but felt comfortable enough to tell you where I am at this point.  Probably way more than you wanted to know but nonetheless, wanted to fill you in!  I'll see you in a month or so."

And this is the response from the doctor:

"That is GREAT news! I'm so happy for you! I can certainly understand your worry about a pending crash but usually what I hear from other patients is that if there is one, that it is not very severe and doesn't last very long. I know that you want to do more because you feel better, but please, please try to keep an even pace and do not over exert yourself as you have been in the last few weeks. It's best to try to conserve as much energy as you can and in the long run that will pay off. And I know it's easier said than done but please try.

I'll be thinking of you and hoping you continue to feel well."

So...this post is really about documenting what has been happening.  I've wanted to write for awhile but wasn't sure what would come out when I did.  When I finally did start writing...it was to update my doctor but it felt write putting it here as well.  Fingers crossed things continue as they are.