The bad days of Chronic Fatigue

When starting this blog, I was hoping that I would be able to keep it upbeat.  There's nothing worse than listening to people complain about their problems, right?  But, I also decided that I need to try to post every day.  Today I realized that posting every day means there will be posts on bad days. 

Bad days are different for every person that has CFS. After all, what makes a day terrible for me may only be annoying for someone else. Some Chronic Fatigue sufferers may consider the days of complete exhaustion the worst.  For others, it could be the intense muscle aches. What I consider BAD days are the ones that include headaches. 

(You would think that since I've had regular headaches for almost 15 years, they would be something I'm used to.  So not true.  They're actually becoming more obnoxious to deal with.)

With the bad days comes the challenge of trying various remedies to see what makes it a bit better.  Hot baths, cold packs, stretching, exercise, medicine, massage, etc.  Occasionally, one of these will actually work.

Since I'm trying to be proactive about my health and life, the bad days are an opportunity to review the choices I've made over the last few days to see if there is something better I could have done. (And, yes, being this optimistic while feeling like my head is going to explode is difficult. And a little sickening.)  So, what are the possible causes of today's yuckiness?

• Afternoon nap - for some reason, I get most of my headaches in the afternoon. I wake up from my nap with them. This needs to be fixed.
• Lack of exercise - haven't been attending my water aerobics classes regularly for the last 2 weeks.  I have fewer bad days when I'm consistent with low-impact exercise.
• Not enough sleep - last night was rough.  Sleep did not want to come. And, I woke up much earlier than I wanted to.  
• Several days without naps - the last couple of days have been really long.  While I didn't exert much energy, I was awake and out for most of the day.

Listing it out like this really makes me realize that I have spent the last several days not taking care of myself. And now I'm paying for it. Ugh. 

 

Undiagnosed Chronic Fatigue (CFS) messes with your mind...

If Diabetes is a silent killer, then Chronic Fatigue is a sneaky bastard.  It is an illness that doesn't look like an illness.  It masquerades as a whole bunch of other issues:

• ADD/ADHD
• Depression
• Laziness
• Being out of shape
• Migraines
• Tension Headaches
• Colds
• Allergies
• Forgetfulness
• Vitamin D Deficiency
• IBS
• Flu
• Pulled Muscles
• Self-Centeredness
• Lack of Passion/Drive/Interest/Caring
• TMJ
• Insomnia
• Anxiety

While each of these issues can be present in the life of someone (say... Me) with CFS, until you realize that they are caused or made worse by Chronic Fatigue, you can't fix them.  And, with these as your primary symptoms , it's hard to see that they may actually be caused by the same problem.  They appear to be so unrelated.  

The physical issues - headaches, colds/flues, muscle pain - all seem like isolated events that have common causes.  Then we have the mind/emotional issues - depression, forgetfulness, being self-centered, ADD - that are often all lumped together and "fixed" with medication and thought-process counseling.  

In fact, many people don't even get diagnosed with Chronic Fatigue until they've pushed themselves so hard that their body just completely shuts down and goes on strike.  It takes an absolute breakdown to see that these warning signs have been indicating a bigger problem.

What does this mean for someone who has Chronic Fatigue but doesn't know it?  It means they have a list half a page long of 'issues' that they are trying to deal with.  And that nothing actually solves the problems.  With this pattern, it's easy to see why most people with CFS are misdiagnosed as having severe depression.  

In fact, I remember telling my doctor (after 5 years of on-again/off-again depression treatment), "I don't think my tiredness is because of depression.  I'm pretty sure the depression is caused by my lack of energy and how that affects my life."  It took another couple of years and 2 other doctors before I was finally diagnosed with Chronic Fatigue.  And then, it was only given along with my Fibromyalgia diagnosis.  

For the record, looking back I'm pretty sure I had Chronic Fatigue long before I had Fibro symptoms.  But that's a post for a different day.

Since being diagnosed, it has been an interesting journey.  There is, of course, the grieving process that goes along with any chronic illness.  (Again, a post for a different day).  But since I reached acceptance, I've been getting to know myself all over again.  I no longer have a half-page list of issues to work on.  I don't think of myself as the person that gets any medical problem that comes within 10 miles of me.  

Now I know that I have ONE issue that has lots of ways of showing itself.  But I've already learned a few ways to take care of this one issue.  Rather than living in constant fear of the horde of problems always waiting to ambush me, I'm learning how to control the big beast.  It's brought back my confidence.  I may only be awake for 5 hours at a time.  But each 5 hour segment is more vibrant than the dreary 17 hour days were.  

Welcome to Sleepaholics!

Sleeping Beauty.  Rip Van Winkle.  Hibernating Bears.  Me.

What do all of these things have in common?  A large part of our lives revolves around sleep.  

I was recently diagnosed with Chronic Fatigue Syndrome, which basically means that I am tired all the time. I sleep an average of 13 hours every day - usually 11 hours at night with a 2 hour nap in the afternoon.  If you're unfamiliar with Chronic Fatigue, you probably think that sounds heavenly.  You may even be thinking, "It must be nice to be able to sleep that much."  But, you'd be wrong.  

On a normal day I am awake for 5 hours at a time.  5 hours in the morning, take an afternoon nap, and 5 hours in the evening.  Honestly, it's weird.  Trying to live a normal, adult lifestyle while sleeping like a 2-year-old doesn't work.  

Now, I *can* push it and stay awake all day long, but after 7 hours awake my thought process slows down, decision making is difficult, and even my eye sight suffers.  After 12 hours awake I am a walking Zombie. And, 2 days in a row of this?  I will wake up as a walking Zombie.  

Because this is a fairly recent diagnosis, I am still trying to figure out what this means for me.  Right now, my focus is on learning how to manage this inconvenience so I can continue to lead an exciting and fulfilling life. I will be using this blog as a place to document my journey - my experiments, the successes and failures, and my emotional ups and downs as I explore this odd new place.

Come along for the ride.  It will be an experience.