Post-Exertional Malaise – the CFS Symptom That Doesn’t Know the Difference Between Work & Play

When my husband and I first started dating, we were on the go nonstop.  I went from a marriage to a man who never took me anywhere or did anything with me to a man who was on the go all of the time.  It only took about 3 months into our relationship for all of the activity to catch up with me.  I had the worst CFS flare of my life and was down for months.  I had to go back to work with only very part-time hours and build myself back up slowly over time to full-time again back then.  My husband has always been supportive and has never once thought that I was faking my illness like my ex-husband did.  He could see how I would change, how I would look, and how the illness affected me.  He also understood that one day I could be up doing loads of stuff and the next I could be in bed.  The one thing he never understood and still has trouble understanding is that CFS doesn’t know the difference between work and play. 

The best definition of post-exertional malaise I have found says “Post-exertional malaise is extreme fatigue/exhaustion of inappropriate severity that can temporarily immobilize the patient and worsen her/his symptoms following normal physical or mental activity. It takes the patient an inordinate amount of time to recover � 24 hours or more.” 

When my husband and I were dating, he wouldn’t see anything wrong with taking me on vacation and going site-seeing and running all over the place visiting and having a great time, but he would get upset if my boss wanted me to work an extra few hours.  He wasn’t being mean to me or unusually cruel.  He was trying to make up for all the years I never got to go anywhere or do anything but work and take care of a drunk.  I loved him for his passion for me to see life – I just couldn’t get him to understand that I had to do it all on a much smaller scale. 

ANY type of activity that causes the body to be used physically or mentally can cause post-exertional malaise in CFS patients.  Just sitting here typing this post could cause my symptoms to flare.  The smallest physical or mental activity is responsible for the months upon months and years  I have lost over the last 20 years to this illness.  I also have found that I have to define MY meaning of “resting” to people over the years.  For healthy people, resting may be sitting down and reading a book, taking a light walk, watching television, or emersing themselves into a hobby.  As a CFS patient, my definition of resting means doing absolutely nothing but lying down and going to sleep.  I can be lying down for 2 – 3 hours needing desperately to sleep but my body won’t allow it.  I will get up from lying down and I won’t feel any better.  My husband will say, “But you just rested for 2 or 3 hours.  You don’t feel any better at all?”  He believes that I don’t feel any better, it’s just hard for him to understand why I don’t. 

I love spending time with my family, going on trips, enjoying life and having fun.  But there is always this impending doom in the back of my mind because for a CFS patient, enjoying life and having fun comes at a cost – a huge cost.  One day of fun can mean one or two weeks of misery.  We lose the majority of our days and weeks recouping from a few hours or a day of fun.  Post-exertional malaise is the CFS symptom that is the angriest and robs us from the most enjoyable parts of life. 

As CFS patients, we have to look at life differently than most people and we can’t just “go with the flow”.  Every activity of the day has to be questioned, thought about, and we have to decide every single minute of every single day what we can and can’t do because we know that just that one extra thing can send us to the bed or couch incapacitated.   Every part of life starts to lose its joy because in the back of a CFS patient’s mind we are always waiting.  Waiting to see if dancing at a party is going to send our body into a downward spiral;  if spending an extra hour working on a birthday cake for a family member is going to mean losing the rest of the week  to exhaustion;  if  volunteering to babysit for your own nieces, nephews or grandchildren is going to leave you bedridden because just the noise of more than one child at a time can be emotionally and physically draining for us.  These are all normal activities that people do every single day that they don’t even have to think about.  

CFS patients have to think about every single thing from the time we get up in the morning and those things listed above are what we think on good days.  When a CFS patient is flaring, we have to choose between taking a shower and getting breakfast for the kids.  We have to decide between brushing our teeth or washing our hair.  We have to decide between making dinner or doing a load of laundry.  All of these things most people take for granted every day and they never realize how lucky they are that they don’t have to choose.  They can just LIVE.   

I remember one time I had to go to the dentist for my bi-annual cleaning and this was during a time where I was having a lot of flares.  The dental hygenist wanted to know why I wasn’t flossing.  I told her I had to make a choice – I either brush my teeth or I floss.  That’s all I have the energy to do.  She looked at me like I had two heads but I was too exhausted to explain and I just let it go.  I didn’t even have the energy to worry about it at that time. 

A few weeks ago when we were having all of this snow, I was asked to stay longer at work.  The assistant manager asked me if I could stay until 5 or 5:30 p.m, which was about 4 hours longer than the end of my scheduled shift.  I told him I could stay a 1/2 an hour or an hour more but that was the limit.  I have no opportunities for advancement or cannot help out when needed because CFS knows the difference between a 4-hour shift and a 5-hour or more shift.  If I work any more than 4 hours, two days a week, I pay for it. 

The post-exertional malaise of CFS is like a punishment.  I always feel like I am being punished for just trying to live life, be happy and be as normal as possible.  Normal will never be known to CFS patients without a cure.  Our lives are lived in fear of the unrelenting demons of CFS.