Thursday, June 15, 2017

Terrifying

Sharing my story has always been difficult but it's been a whole lot easier doing so with a certain sense of anonymity on this blog.  Over the last couple of years, I have slowly started to step out of the shadows and be more authentic in my journey.  Today, I took a huge step by submitting a writing piece to www.themighty.com.  I won't know for another month or so whether or not it is accepted and I'm terrified that it won't be...but I'm even more terrified that it will!

I couldn't have started with something trivial and worked my way up to the big stuff!  I had to jump in with both feet and bare my soul.  The submission is a compilation of a few different posts and I thought sharing it here might ease the horror of knowing it could be published for the world to see:

For me, one of the hardest parts of living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is maintaining a hope that things will get better.  I am convinced that if I am not careful, the despair I experience on my worst days will destroy me from the inside out.  In my healthy moments, I intellectually understand the dark places but in the midst of debilitating fatigue, there are no rational thoughts.

I understand that I have a blessed life.  I know that even among those who suffer from CFS/ME, I am one of the lucky ones.  I am still able to work full-time and I spend more time out of bed than in bed.  I understand that I have an amazing family and support system and that I am not alone in my fight.  I understand that even suffering through fatigue and illness, I have a better life than many people in this world do.  I understand that other illnesses and circumstances rob people of time with loved ones in unimaginable ways.  Given that, it is even more difficult to explain that all of that intellectual understanding goes by the wayside when I am in the grips of fatigue.  

In my head, I have written numerous letters to my family and friends saying goodbye and trying to explain to them why I no longer want to live.  It is in the darkest moments when I am too tired to even move that intellectual understanding disappears completely and I am overcome with pain, sadness and despair.  I cannot see past the next second much less the next day when I know things will be better.  The thoughts that overwhelm me are the ones that remind me how much I have lost.  The amount of hours I have spent in bed when I could have been doing other things.  The number of mornings I dragged myself out of bed with all-consuming thoughts of needing to crawl back under the covers.  The many moments of my children's lives I have missed because I was too tired to leave my room.  The countless times I snapped at them or robbed them of precious moments because I was ill.  The time I have spent calculating out how much longer I could push myself instead of enjoying the activity in front of me.  The times I tried to pretend that I was just lazy and wanted to "relax" when truth be told, I was too embarrassed to admit that I simply could not move past my bedroom that day.  In those moments, hope is fleeting and I imagine everyone else would be better off without me.  In those moments, death feels more like a welcome relief than a tragic end.

In my healthy moments I cannot 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 is 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 cannot 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 is 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 now, I am confident I will leave this piece of writing and go about my day under the cloak of invisibility.  I will spend time with family and friends and they will have no idea the utter hopelessness I feel in those moments of fatigue.  I will continue to 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 on those torturous days.  As I come to this point in the page, I step back and reflect on this last paragraph.  When I do, I realize that perhaps the hope I seek isn't that elusive after all.


Monday, December 12, 2016

It's a Vicious Cycle

I'll probably pay for it later this week but I decided to clean my bedroom and two of our bathrooms today and put up some more Christmas decorations.  It took a lot of energy that I probably don't have to spare but for the moment, it feels good to have done something.

It has been a rough week.  I was already running on empty when my daughter had a medical scare Thursday night which required us to stay up most of that night.  For some people, a few hours of sleep would have put them back on their feet after a night like that.  For me, it will take days (if not weeks) to recover from something like that.

Every time I open up and try to be more honest, it becomes more and more apparent that people have absolutely no idea just how difficult things are for me and may even think I am being a bit dramatic. I wonder if they knew that things have been so difficult lately that I showered exactly 4 times over the last 8 days and only washed my hair twice...if they would think differently of me.  Gross?  Perhaps.  But it's a survival mechanism.  When you can't miss work and don't want to miss kids' events, you prioritize.  Thank goodness for dry shampoo is all I can say!

What I really wanted to do this week was go Christmas shopping, decorate my entire house (including the outside), take my kids to go look at Christmas lights, wrap some presents, do some Christmas baking and go outside and enjoy the beautiful weather.  Instead, I worked, slept, watched TV and tried my hardest not to crash.    

Did I have some moments of enjoyment?  Of course I did.  But those moments of happiness do not negate the immense struggles that overshadow every single moment of my life.  My life is a constant balance between what I WANT to do, what I SHOULD do and what I physically CAN do.  If I'm not careful, the CAN piece of that will win out and I will find myself in bed, unable to move.

The episode I had in the end of September is a constant reminder of what will happen if I push too hard.  I can no longer control my crashes and they come harder and more frequently than ever.  This newfound unpredictability raises my anxiety and stress levels which just makes things worse.  It's a vicious cycle.

Thursday, December 1, 2016

Too Painful For Others to Accept

In one of the videos I posted recently, I shared the very real, raw truth that I have a hard time imagining life going on this way and often feel that death would be a relief.  I wish I could say that I am sure I will never truly consider killing myself but the truth is that I think about it regularly.  I know I am not alone.  I recently came across this article:

"Suicide rates are high. Surely, suicide must be preceded by a loneliness that cannot be imagined? ME victims - and I have interviewed or had correspondence with hundreds — feel that not only do they suffer from symptoms which vary from pain in the joints, a sense that their limbs are exploding, headaches and mental fog, but they also have debilitating fatigue. "

I really resonate with the quote above because it puts the debilitating fatigue at the end of the sentence, rather than at the beginning.  One of the problems with the name Chronic Fatigue Syndrome is that it leads people to believe that it is all about fatigue.   The truth is that CFS is so much more devastating than being tired all the time.

I have tried really hard to start opening up and being more honest in my real life about how devastating this condition is for me.  I feel incredibly isolated and as if I'm fighting a demon that no one else can see.  It's a very lonely feeling.  Unfortunately, the more I have opened up and tried to talk about my CFS, the more lonely I have felt.

When talking with people recently, I shared with them that I am planning to retire at age 50 because working full-time is so difficult at the moment, I can't imagine doing it much longer.  The youngest I can retire (and receive all of my benefits including the all-important medical benefits) is 50 so I'm pushing myself to reach that goal.  By the looks on their faces, you would have thought I just said, "I'm going to have an alien baby in 5 1/2 years."  They did not understand at all why I would not be able to work past 50.

And when talking with someone else recently, I was reminded me that working an extra 3 years (to match my husband's retirement age) would bolster our monthly income by a significant amount.  When my eyes welled up with tears and I told the person that I'm not even sure I can make it to 50 much less 53, the person said, "You have to make it to 50."  I know I have to make it to 50!  I get it how important that is and I'm trying.  But it was very apparent that this person had no idea just how difficult things are for me at the moment.

Sometimes, I think I have done too good of a job of covering up and masking the toll that CFS has taken on me because it's just too painful to share.  Other times, I think I have done too good of a job of covering up and masking the toll that CFS has taken on me because it is just too painful for others to accept.

Friday, November 25, 2016

Raw Moments

I recorded these videos several weeks ago and have been debating whether or not I would post them.  I sat with my family this weekend and for the first time in a long time and talked about my health.  I could see it on their faces and feel it in their voices...they didn't fully comprehend just how difficult things are for me.  It was then that I decided that I needed to share these videos.  I may be a very good actress but it's important that somewhere in the world, the truth is revealed.

Video #1
Video #2
Video #3
Video #4

Sunday, September 18, 2016

Honest Reflections

Yesterday was the worst day I've had in a long time.  I can normally feel crashes coming on.  I actually plan for them.  I have lived with this condition long enough to know my body and know just how far I can push myself before I crash.  Unexpectedly, yesterday hit me like a tidal wave.

The prior week hadn't been particularly stressful or active.  I worked all week and had a couple of late evenings watching my daughter's volleyball game and a pretty late night watching my son's football game.  However, nothing too daunting or out of the ordinary and at the end of Friday night, I was feeling pretty proud of myself for having made it through unscathed.  So, I was quite surprised when I woke up at 5am Saturday morning in a tremendous amount of pain.

I tossed and turned for about an hour and a half trying to get comfortable.  My legs and hips ached and I couldn't find a position that would allow me to rest.  During that time, I also realized it was my mom's birthday.  I thought about how fun it would be to get up and make the hour and half drive to surprise her and take her to breakfast. I could do that and still be home by early afternoon so that I could rest without wearing myself out before we had dinner with friends.  But I was in a tremendous amount of pain and just getting out of bed felt like an enormous feat.  My mind was racing but my body felt a thousand years behind. It occurred to me that this might be the start of a crash.  I willed myself to go back to sleep and get some much needed rest.  Even if I couldn't go see my mom for breakfast, I still wanted to be able to enjoy the last day before my husband went back to work and the first free Saturday we'd had in quite some time.

After another half hour or so, I finally gave up on sleep and headed to the living room to sit in a recliner and watch tv.  Just moving from the bedroom to the living room was an incredibly difficult task.  I could feel my body shutting down.  I felt like I weighed 1000 pounds and was moving through three feet of snow.  I was so disappointed when I realized I was crashing.  This is not what I wanted to do today.

As I sat in the recliner with my entire body aching and the feeling of fog rolling in around me, I was confronted with the fact that I was no longer in control.  My body was.  And the tears began to fall.  Whatever I had planned (or not planned) for the day, wouldn't matter.  I would spend the entire day, laying down.  I was prepping myself to give up control and surrender to it when my husband came out and asked if I wanted to go to Starbucks and run some errands with him.  Yes!  This is what I wanted to do.  I didn't want to sit here like an 80 year old woman all day.  So, I got up, got dressed and set out to spend a couple of hours running errands with him.

The minute I got in the truck, I knew it was not going to go the way I would like.  I was exhausted. Plain and simple.  Exhausted.  I felt like my butt was permanently attached to the seat and just turning my head took effort.  My thoughts were consumed with the pain in my elbows, knees and hips and as a result, I couldn't even hold a conversation.

The minute we returned home, I went to bed and spent the rest of the day doing absolutely nothing but feeling like crap. Calling my mom to wish her a happy birthday, knowing I couldn't go and visit her, was painful.  At one point, I moved to the backyard just to get some fresh air.  My plan was to go lay by the pool and read for a bit but when I opened the back door, the pool seemed much too far away and I, instead, took a seat a few steps away at the table on the patio.  The tears flowed as I admitted to myself that walking 30 years to the pool was simply too much for me. In that moment, I snapped a picture of myself.  When I started this blog, it was to be honest with myself.  I spend most of my life being dishonest with everyone, including myself.  I never talk about the extent of my fatigue or the far-reaching ramifications of it.  Writing is the only avenue I use to get things out so that my frustrations don't eat me alive from the inside out.  I felt compelled to capture the raw emotions that I was experiencing in that moment.
This picture is an honest reflection of the pain of Chronic Fatigue.  It represents the fight, the fear, the anger, the pain, the loss and the frustration I feel.  It represents the lowest moments in my life.  The moments when I feel so incredibly alone because no one really understands the full impact of being tired.  The moments when my kids think I'm lazy and if I just worked out more, I'd feel better.  The moments when my husband looks for a reason for why I'm not feeling well, instead of understanding that this is just who I am.  The moments when hope is fleeting and I imagine everyone else better off without me. The moments when death would feel more like a welcome relief than a tragic end.

Wednesday, August 24, 2016

Nowhere to Hide

I'm having such a difficult time tonight.  There is so much going through my head, I don't even know where to start.  It's been a long 5 weeks.  I've made three quick trips to San Diego, I've worked full-time, my husband has been gone for nearly three weeks and it's the start of the school year for both the kids and I which means stress levels and schedules have increased.  I crashed two weeks ago and called in sick to work for two days.  I thought that was enough to recover but I crashed again and am having a very hard time bouncing back.  I have a busy week ahead of me and can't afford to be down anymore.

I think the hardest part for me right now is that I feel so incredibly alone.  I rarely share my health struggles with anyone so it's not unusual to feel lonely in my grief.  However, I normally am able to sort of hibernate or hide from the world so that I am not forced to either share or cover up.  The past couple of weeks, my kids have really noticed that I am off my game.  My son, without any understanding of what I'm struggling with, has faulted me for not cleaning or doing much of anything around the house.  What I am and am not doing is magnified by the fact that my husband is not around to cover for me and the kids are noticing.

When the kids were little, I was able to hide everything from them very well.  I could sleep when they slept, I could hide my fatigue in games I would play with them that allowed me to rest, and they were simply unaware of the magnitude of the weight I was carrying around with me.  As they get older, it is much more difficult and now, nearly impossible, to hide things from them.  The problem is, I'm not ready to be honest with them.  I'm not even ready to begin thinking about a time when I will share with them how difficult life is for me.

Wednesday, July 20, 2016

Breathtaking in the Worst Possible Way

One of the things I think is most difficult for people to understand is that my fatigue is overwhelming and all-consuming.  It occupies so much of my daily life, it's ridiculous.  A couple of weeks ago, I took a 14+ hour roundtrip roadtrip over the period of two days to drop my daughter off at a summer program for four very long weeks.  I worked Monday through Friday, we left Saturday morning and returned very, very late Sunday night (or actually...very, very early Monday morning!).  I also had to leave for work at 6:15am the following Monday for two consecutive days of very important meetings.  The entire road trip from start to finish was about 40 hours but I agonized over it for several weeks.

The minute I realized that the trip would have to be a quick down and back with no rest days in between that and work...I became anxious.  I looked at every possible option for changing the plans.  As the weeks went on and it became apparent that the plan we had in place, was the only one that was going to work, I began to panic a bit.  I did my best to reserve as much energy as possible leading up to the trip.  I rested as much as possible (including one nap) over the two days we were gone and I didn't drive at all during the trip.  I did okay.  I managed to make it to work in time for my two very long work days and finished out the week fairly strong.  I did basically spend the following weekend in bed and it's been two weeks and I still haven't completely recovered but I felt good about making it through without a true crash.

Unfortunately, it also became glaringly obvious what an incredible toll my fatigue takes on my mental health and how that impacts everyone around me.  I worried and worried and worried for weeks leading up to the trip.  I was anxious and irritable and could not stop thinking about how to prevent myself from getting too tired over the course of those couple of weeks.  When we dropped my daughter off, I didn't soak in the moment and enjoy the festivities.  Instead, I gave her a quick hug and said, "I'm sorry, honey.  We need to get on the road."  I was thinking more about the need to get on the road and get home as soon as possible, to get as many hours of sleep as possible than I was thinking about the monumental occasion of leaving my daughter for longer than I had ever left her before.  My fear of a future crash completely took over and stole the experience of my being able to enjoy that meaningful time in my life.  I was singularly focused on getting my needed rest.

As we got on the road, I was obsessively counting down the number of hours until I could be home in bed and the number of hours I would be able to sleep before I had to get up and begin the commute to work.  Every traffic jam, every stop, brought me closer to a crash.  An additional two unplanned stops, all but left me deranged.  I was completely irrational.  People needed to stop to go to the bathroom.  That's a human experience but I was anything but humane.  All I could think about was how those extra 15 minutes spent at the gas station were 15 minutes of sleep I would miss out on.  And those 15 minutes might make the difference between me making it through the next week or not.

In my head, I knew I was being ridiculous but my emotions were real.  I had a guttural need to rest.  My days are packed and I know exactly when I can afford to get sick and when I cannot.  I could not afford a crash and I was terrified that I wouldn't be able to control it.  For the first time, I clearly saw the mental toll this condition takes on not only me, but those around me.  People should not feel afraid for having to stop and use the restroom for goodness sake!  People should not feel the need to drive the entire 14+ hours without any help from me for fear that might be the thing that puts me in bed for days at a time.

The sad fact is that my fatigue is overwhelming and all-consuming.  It invades my thoughts every day, all day.  It breeds anxiety and fear and it is completely relentless.  Totally and utterly breathtaking in the worst possible way.

Friday, May 27, 2016

*Just Tired*

My tank is empty.  I crashed.  I hit the wall.  I pushed and pushed and pushed myself until I just couldn't move.  When I went down, I called in "sick" to work.  What else do you do, call in "tired"?

I hate the word "tired".  "Tired" doesn't even begin to explain how I feel.  "Tired" doesn't begin to define the depth of the fatigue that prevents me from making sure my kids are fed, making sure the house is locked up and the alarm is set before I hit the bed for the evening.  It doesn't define the body aches that prevent me from falling asleep even though I'm exhausted.  Tired doesn't indicate the congestion in my chest, the nausea in my head and the fact that my body feels like it weighs a thousand pounds so that even rolling over in bed takes too much effort.  It doesn't explain the despair I feel in not having control over my life and tired doesn't reflect the anguish that this never-ending fatigue is my future.

So, imagine how it makes me feel when someone asks me..."Are you sick or just tired?"  The question really should be..."Are you tired or just sick?" because believe me...I would MUCH rather be sick.  I can get over being sick.  I can't get over being *just tired*.

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.