Tag Archives: chronic fatigue syndrome

Faraday & Illness

Today I tweeted:

I remember how horrifying it was to turn around and suddenly not remember things that were basic and intrinsic to me.

Like trying to walk on a leg that suddenly wasn’t there.

It wasn’t “oh, where did I put my car keys” it was “what are the letters in the alphabet?” “How do I type again?”

And what cartoon Faraday says about not being only to hold the whole in his head but only things in parts, that’s exactly what it’s still like.


Sympathizing

The best way to sympathize is to listen, to ask questions, and to try to understand.  I’m not always good at this, myself, but I hope that I can at least try to deconstruct what it’s like from the other end, so that we can all learn how to do it better together.

For example, one of the most popular “sympathetic” attempts people make on me is for them to try to show me how they understand my illness because they know what it’s like to be tired.  (This is the unfortunate consequence of having an illness named Chronic Fatigue Syndrome rather than something ominous and obscure-sounding like fibromyalgia, lupus, or even cancer.  Before you speak, ask yourself: would you commiserate this way with someone who has any other disabling illness? Why not?)

This type of commiseration happened to me again twice today (as I write this).  The second time, I just shook my head and told her it’s not like that at all, rather than let her get away with it.  Still, I’m much better at expressing myself through writing.

So without further ado, here is my attempt to answer this phrase via Twitter with a slice of life snapshot,  to try to write up a pithy comparison to what a normal health life is like vs. a chronically ill one.

  • Being tired all the time because you’re overworking yourself is not the same thing as having a chronic illness, just fyi
  • Went to the library on Thursday, found I couldn’t remember the alphabet nor could I see any of the books on the shelves #chronicillness
  • On Friday I opened up a book to start reading, couldn’t even read one sentence before I stopped seeing the page #chronicillness
  • Was exhausted, sick & teary all day Friday, but my body forgot how to flip the switch for sleep, had insomnia till 4 am. #chronicillness
  • Woke up, couldn’t eat without feeling like I was just going to puke it all back up. Am getting good at this nausea thing #chronicillness
  • At least I haven’t had heart problems this week. #chronicillness
  • If I used Twitter to vent about my health whenever I felt poorly, you’d all get tired of me reaaaal soon. #chronicillness

Satisfaction &/vs. Hope

One of the number one difficulties I’ve had over the past two and a half years of my illness is verbalizing to those who are not ill the lesson that I’ve learned about having peace and satisfaction with who I am and where I am.  My listeners’ automatic reaction is to assume that 1) I do not have the faith required to be healed, or 2) I do not have hope in being healed or recovering in my future.  Then they hasten to “teach” me all about how my approach is wrong.

Granted, they may be right in regards to #2, at least sometimes.  There have been times when the enormous friction between my present and my past–or my present and my future–has worn me out to the point where in order to be happy, I’ve had to give it up, to just let myself be who I am and where I am right now, and not worry about “healing” or what all may or may not be involved in the process beyond managing my own present better.

Maybe that’s a lack of hope.  I used to think I lacked hope, until someone once told me that hope is far more pervasive than that. Hope isn’t just about the future, hope can also be about your present.  Hope is the power to see the goodness in your darkness.  It is the power to overcome despair and sadness with humor, cheer, and optimism, (despair is from the French désespoir and means a lack of hope).  Hope is the power of knowing that all things, even the hard things, will work together to make you stronger, more compassionate, more courageous.  Hope is the power of peace in every moment.  It lets you see why you are here, now, in this moment, that it builds you up towards some end goal, and that whatever beast you are facing can be tamed.

There are some people who will suffer with their condition or illness all of their life.  To tell them they lack faith or hope, especially when they do not in fact lack these things is cruel.  To misunderstand them when they talk about the lessons they’ve learned about finding joy in their present, building sandcastles and making their present richer, mores satisfying and more enjoyable–to misunderstand them is inexcusable.  Please stop and listen to them, they may have something to say that you can then apply to your own present, to your own challenges, to make your own present life more fulfilling–wherever you are in it.

And yet, there is one facet of hope that I must not ignore while I take satisfaction in my present.  It is the prescient power of Hope, the power to believe–and to work towards–a change of your present so that your future won’t be more of the same.  It is letting go of fear of The Unknown, and embracing the Better Unknown instead.  It’s being willing to walk into the dark tunnel of change, not knowing what awaits you on the other side, or even how painful it will be to get there.

It is a letting go of control over your life, and giving it up to God or fate or the future or someone else.

This prescient hope, this hope that is a force for change, is only a part of what heals.  Healing begins first in your present, creating greater peace, calm, and happiness.  Then it extends backwards and forwards–looking more favorably into your past, and weaving itself into a brighter future.  At least, that is becoming my experience.

There is a famous and wise saying: learn from the past, live in the present, and plan for the future.  Whenever I talk about making my present a better place to live, I hope you will not mistake me.  I am not ignoring the past, and I am not shutting out the future.  I am only discussing all the weeding and planting I’ve been doing in my present.  There has been a lot of work to do, and I have learned a lot from the endeavor.

– –

For those who don’t like large blocks of text, read the Twitter-condensed version:

The delicate balance of the chronically ill: learning how to both accept & appreciate where you are, yet still have hope in something better.

Those who are healthy will want you to be healthy, impatient and unsatisfied with your present.

Those who are ill will find it hard to imagine anything could be different or better.

Accepting your present for what it is, for its joys and sorrows, does not mean you do not–or should not–have hope for a better future.  There can be peace in any present, as well as joy in any journey.


How are you?

Yeah, that previous post is really long. I apologize for that. It’s just so, well, hard to explain how I’m doing or what I’m going through.

Speaking of, my least favorite question in the world I get is “How are you?”  I feel like I should actually address that conundrum here, if I can.

Most of the time when I get that question, I’m in public and the people don’t really know me. Surprisingly, when people look at me, they don’t see anything of what I’m going through. I’ve been in buckets of sharp pain, feeling like I’m about to faint or throw up, having my heart thudding strangely, or wanting to curl in a corner and hide from sheer panic–and someone will tell me that I look “so much better, and that I must be better now.”   The first hundred times I heard this, I was utterly baffled. Okay, I’m still baffled.  But I came to the conclusion that my illness is invisible 90% of the time.  This makes explaining “how I feel” really awkward, because most of the time people don’t want a negative answer. They want to hear how great I feel.  They don’t want me to prove them wrong or tell them how my looks are deceiving.

I do not feel great. In fact, my best days are your worst days, and my worst days are hell.

Granted, all of this makes the ability to understand my cryptic answers of “I’m okay” or “I’m fine” difficult to parse.

What I mean is:

  • Your “How are you?” was just a greeting, you don’t actually want to know so I won’t use the last of my energy/spoons to find some way to explain how I actually am right now.  Your casual words are actually a difficult task that I would rather not do.
  • It’s too complicated to explain. I don’t want to explain. It’s too hard to try to find the words to capture everything just right.  I’d rather tell you what I’m currently doing.  That’s so much easier.
  • Dwelling on what’s wrong has never made me feel better, (despite all the blogposts I’m trying to make about what’s wrong right now.)
  • If I do tell you what I’m experiencing, you won’t believe me that I’m used to it, that this is my life. You will wince or cringe or treat me differently or stare.  But for all your sympathy, you still won’t get what it’s like.  I can see it in your eyes. That doesn’t make me feel better about my situation at all. So why do it?
  • If I do tell you, it’s because I’m actually doing well enough to try to explain.  However, because of how “awful” my answer sounds, you will automatically think that since I’ve told you a portion of what I’m going through, that this is ALL that I’m going through, or I must be having a terrible day. –No. If I told you in any detail, I’m having a “good day”, despite all evidence to the contrary.  If I’m having a hell-day, why in the world would I be talking to you right now?  I’d be in bed, just trying to survive another few seconds.

So, “okay” means “it’s hard, but I can do it, I’m surviving” and “I’d rather summarize than go into details”.

I’ll stop here. I really don’t want to make a series of blog-posts so long no one will read it, but it’s hard to explain in all its facets. It’s hard to explain what I mean and what I feel.


Symptoms: What it’s not

Alright, first off I’m going to say that no two people with Chronic Fatigue Syndrome are going to have the exact same symptoms. The way you are diagnosed is you have to have had symptoms for more than 6 months, and by eliminating the following other possibilities:

Exclusionary criteria:

  • Pregnancy within past 12 months.
  • Stroke with no full recovery.
  • Chronic obstructive pulmonary disorder.
  • Congestive heart failure.
  • Insulin dependent diabetes.
  • Uncontrolled diabetes type 11
  • Anemia/ Sickle cell anemia
  • Uncontrolled hypothyroidism or uncontrolled hypertension
  • BMI > 40
  • Cancer within 5 years or current chemotherapy
  • Multiple sclerosis
  • Active epstein barr (mono virus)
  • CMV-active
  • Lyme disease
  • Neuropathy
  • Parkinson’s disease
  • Systemic lupus erythematosus
  • Connective tissue disorder
  • Sjogren’s
  • Inflammatory arthritis or Rheumatoid arthritis
  • Polymyalgia rheumatica
  • Dermatomyositis
  • Polymyositis
  • Adrenal disorder
  • Chronic renal failure
  • Untreated depression or history of major depressive episode
  • Schizophrenia
  • Bipolar
  • Dementia
  • Substance abuse problems within past 2 years, OR history of substance abuse prior to past two years
  • Sleep apnea
  • Restless legs syndrome
  • Anorexia nervosa within past 5 years
  • Bulimia nervosa within past 5 years
  • Dysthymia
  • Generalized anxiety disorder
  • Panic disorder
  • Obsessive compulsive disorder
  • Post traumatic stress disorder
  • Psychotic disorders
  • Mood disorder with psychotic features
  • Antisocial personality disorder
  • Suicidality
  • Hepatitis B or C

That’s a long list. Did you read it? If you did, and you already know the symptoms of Chronic Fatigue Syndrome, you will realize why each of those happens to be on Mayo Clinic’s list.

Why? Because Chronic Fatigue Syndrome (and its twin sister Fibromyalgia) mimic or are similar to all of those in one way or another.

Yep, all of those.

I should note that if you have any of the above, you’re allowed to say you experience “chronic fatigue” but you’re not allowed to say you have Chronic Fatigue Syndrome. Yeah, it’s confusing, but they’re two separate things. (We need a new name!)

Next up? Symptoms of Chronic Fatigue Syndrome.


Chronic Fatigue Syndrome Awareness Month

An overview and introduction.

This month marks my two year anniversary of being chronically ill.

On July 25, 2010 I got a virus…and never recovered. I know the date, I know my starting symptoms, and I know my progress through my illness up until I was finally diagnosed at the Mayo Clinic in Minnesota in February 2011.  Between July and February, I visited two Armenian hospitals and was forced to stay in contact with two American doctors while I was in Armenia and went through a battery of tests. Then I came home to the States when nothing was conclusive and went through another battery of doctors and tests that eventually led to my diagnosis by process of elimination.

From the very beginning, I’ve had a lot of trouble explaining what it is I am going through.

The first 4 months of being sick, I was in Armenia, and very few people believed that I wasn’t faking it, crazy, or otherwise trumping up my symptoms or freaking out.  I have never been a hypochondriac and never will be. I have always been quite accurate with self-diagnosis and awareness of my own body.  When I was eleven, I diagnosed myself with pneumonia. X-rays showed I was correct.  When I was in Armenia, I even diagnosed myself with mono.  I was later proved correct. The problem was, that when the mono virus was gone and defeated, when enough weeks had lapsed that it should have been over, it wasn’t.  My illness had become something else.

So what is Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome is triggered either by a virus that then disrupts the body to the point where it forgets how to reboot and recover AND/OR by traumatic stress, sort of like PTSD.

What I mean by that is this: when we are sick, say, with a fever, it is our own body’s regulations that give us that fever. It’s not the virus or bacteria doing it.  If we lose our appetite, if we stop being able to digest our food properly. If we become nauseous, deathly-weary, if we have a fever-fog, it is our body doing it, not any virus.  Our body shuts down our systems to “run on minimal” or tinkers with them, so that it can fight.

My body just doesn’t remember how to flip the switch to run its systems on “normal” anymore.  That’s what “Chronic Fatigue Syndrome” means.

If you were wondering about the illness’ name, yes, I have very little energy, but the name of my illness is an unfortunate misnomer. I’m not “just tired all the time” , and to imply such is understandable but also a bit insulting.  I know what normal fatigue is. At one point in my life, I went to school full time and had two jobs on top of that. I worked from 7 AM to Midnight nonstop every day.

This is different. I am going to be frank and say–This is worse.

What about recovery, you ask? What’s the cure?

Answer? There is no cure. There are no medications that work.  I will go into more of that later, but the answer you’re looking for is that Patience is the cure. You have to wait for your body to recover itself. You have to take care of yourself and be patient with your own limitations. (I know, shocking, no one wants to take care of themselves. They want to push themselves to extremes, make demands on their bodies until you drop from exhaustion at the end of a hard day.)

Self-management is the only way to cope.  Being aware of what you can and can’t do.  Realizing that saying “I can’t do this” or “I can no longer do that very well” does not mean that you are being “defeatist” or “are giving up” or “depressed”.  But it also does not mean you have to let go of your dreams. Slow and steady can win any race.  Being frustrated by the pace or your limitations doesn’t help you at all.

Realizing that no matter how hard other people may or may not try, they won’t understand what it is you’re going through. Not even someone else with Chronic Fatigue Syndrome, because every body breaks in a different way.  It’s just you and God now.

What about recovery times?  Again, it varies. I know someone whose body didn’t break as bad, and she recovered in 9 months. I’ve heard of someone else taking 8 years.  Someone else I know has never recovered.  There’s a huge range.

I want to point out here that telling someone with a chronic illness “It will be over soon” is NOT helpful.  I’m not implying that “hope is cruel”, but I’m saying that I’ve heard regular variations on that theme since the very first day I got sick two years ago.  The past, the present, and the future actually collide a lot less than our culture thinks they do.  To successfully live in the present, you must live in the present. Learn from the past, plan for the future, but live in the present.  There is no other way to survive successfully, joyfully, or so on.

Alright, this concludes my introductory overview.  My goal for this month is to increase understanding and awareness of my illness.  I have reached the point in writing my novella Queen of the Eight Banners where my heroine must struggle with a lot of the symptoms, limitations, and management strategies that I will be explaining over the next few weeks. So it all works out rather nicely.

It’s been a year since I’ve had the idea to use my writing skills to tackle the problem of misunderstandings about what I’m dealing with. My original plan was to tackle it with religious nonfiction, though I struggled with a way to explain some of my deeply personal, religious/spiritual experiences that have been one of my main coping mechanisms while still being respectful towards them.  Not every experience should be shared with the general public.  My therapist pointed out that I could also bend fiction to my advantage.  So I began the task of starting that soon after.

However, I’ve also been aware that fiction doesn’t reach all audiences, so I’m going to try again in a nonfiction setting here.  Yes, I’m commandeering my own blog for the purpose.  I wish my blog had a bigger audience so that I could be a greater force for understanding and change, but this is what I have, so this is what I’ll do.

As my last addendum, I want to say that I will be leaving my religious experiences and spirituality out of these next posts.  My topics of discussion instead will be much more physical-

  • symptoms
  • limitations
  • comparisons
  • and self-management/coping strategies

Since I’ve chosen four topics, they will appear over the next four Fridays.

Here we go!