Living With Chronic Fatigue Syndrome.

Hello All,

Through about 41 posts, I have described parts of my life as being tired and not being able to live my life the way I want. I figured it was time I dedicated a post to this illness and it's effect on me.

Wikipedia describes Chronic Fatigue Syndrome the following way:

Symptoms of CFS include malaise after exertion; unrefreshing sleep, widespread muscle and joint pain, sore throat, headaches of a type not previously experienced, cognitive difficulties, chronic and severe mental and physical exhaustion, and other characteristic symptoms in a previously healthy and active person. Additional symptoms may be reported, including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, painful and often slightly swollen lymph nodes, cardiac and respiratory problems.[7] It is unclear if these symptoms represent co-morbid conditions or if they are produced by an underlying etiology of CFS.[5] CFS symptoms vary in number, type, and severity from person to person.[8] Quality of life of persons with CFS can be extremely compromised.

But what does that mean exactly?

I guess that is slightly different from one person to the next, depending on how severe they have this illness and how it manifests itself.

What does it mean in regards to me?

It means that I am tired all the time.  Sometimes so tired that I can rarely function.  It means that it can take me several days to overcome exertion.

Concretely what does that means?

How about I give a few examples of my life.  Recently, my father has come back into my life and has decided he wanted to help me renovate my home.  He has been a great help in that we have painted most of the house, are removing most of the carpets and replacing with laminate making the home look better and be easier to maintain.

My father and I have an understanding, he does the work (paint, replace floors) but none of the prep and post work (like emptying a room and putting everything back).  Often that means that 5-6 hours of work (where I help him as much as I can) means I will have as many hours pre and post renovation in work. 

He works on the weekends, usually a Saturday as I work during the week and he spends Sunday with his girlfriend (how sweet!)  Well one weekend of his help and I am out of commission for the rest of the week, sometimes even more than a week.

What does out of commission mean?  It means that I need to sleep more to try and feel refreshed enough to go to work.  It means that I will have to go to bed at 6:30~7:00 o'clock and have trouble waking up in the morning.  It means that I will snooze my alarm one time too many in the morning making me "rush" to get to work.  It means possibly even having to take a day off to try and recuperate.

Don't get me wrong I appreciate what my dad is doing for me and love the results after, but it does come at a cost.


I once explained to a friend of my daughter that I was like an old rechargeable battery that would not take a full charge anymore.  I permanently function at 75%.  My recharge rate is about 50% per day.  So if I use up 50% of energy then we are fine, I am back to 75% the next day, but if I use up 75% then the next day I am only at 50% and unless I can find a way to regain that extra 25%  I will be at 50% for a while.  There have been times (Like when I was moving for example or some of the current renos) when I actually went into the negatives.  This means that the next day I wind up being less than 50% and can be at that level for a while.

I need to sleep for about 10 hours a day to recharge that 50%.  That's because my sleep is unrefreshing and I often wake up several times during the night.  I have been known to sleep most of the day as well in order to try and get back to that 75%

One of the most effective treatments for CFS (chonic fatigue syndrome) is Pacing.  Pacing according to Wikipedia:

Pacing is an energy management strategy based on the observation that symptoms of the illness tend to increase following minimal exertion. There are two forms: symptom-contingent pacing, where the decision to stop (and rest or change an activity) is determined by an awareness of an exacerbation of symptoms; and time-contingent pacing, which is determined by a set schedule of activities which a patient estimates he or she is able to complete without triggering post-exertional malaise (PEM).Thus the principle behind pacing for CFS is to avoid over-exertion and an exacerbation of symptoms. It is not aimed at treating the illness as a whole. Those whose illness appears stable may gradually increase activity and exercise levels but according to the principle of pacing, must rest if it becomes clear that they have exceeded their limits. Some programmes combine symptom and time-contingent approaches. A trial of one such programme reported limited benefits. A larger, randomised controlled trial found that pacing had statistically better results than relaxation/flexibility therapy. A 2009 survey of 828 Norwegian CFS patients found that pacing was evaluated as useful by 96% of the participants

But as a single mom with two kids, one of which has high functioning autism, who works fullt time, pacing is not always possible.

Well thanks for reading.

Fear of Driving

I am having trouble with Blogger, where I can't seem to compose with the regular "composer" and HTML doesn't do paragraphs unless I know the code for it. I'll come fix it later when it seems to cooperate better.

Hello all,

I started this post several months ago but have never felt inspired to come and complete it.

Did I mention in a previous post that last year around this time I hit a Huge Pothole? Well ever since that time I have developed a fear of driving. It was mild at first, I'd just be afraid that my car was defective as a result of hitting that pothole. Eventually I went to have it checked and what needed fixing was fixed.

Yet the fear did not go away.

It progressively got worst. I know that in a previous post I discussed some peeves I had in regards to other drivers, well some of those peeves have developed into fears. I am no longer just afraid of bicycles and bikes but of every vehicle on the road. I am also afraid of every pedestrian that walks on the sidewalk.

I am afraid of my car breaking down or suddenly catching fire.
I am afraid of ice and snow.
I am afraid of skidding or hitting something or someone.  Or maybe just getting into an accident by skidding off the road or getting into a rollover.
I am afraid of tow trucks in front of me loosing their load or any type of truck really.
I am afraid of something malfunctioning with the tethers in other load baring vehicles.

 If you can think of it, I am afraid of it.

Just this morning I almost had a collision.  I was driving in a lane and someonedecided to turn into my lane RIGHT WHERE I WAS!.  It's a good thing there was nobody in the other lane as I was able to vear into it at the last minute to avoid a collision.  He either did not look properly or well, there are no other excuses really.  Had I not been able to vear into the next lane he would have hit me, that is how close I was to a collision.  It's not that he was cutting me off and I had to slow down, or that he was trying to come in behind me, there was enough speed to hit me.  This was right near my home, the rest of the drive in to work I was raw nerves.
I have discussed it with a therapist but since I am still driving I don't think they have taken this fear seriously.

Yes I am still driving, with my heart in my throat every single time, on the verge of hyperventilation from shear panic but yes I am still driving.  I hear that if I stop it will only get worst.

Last week I spoke to my psychiatrist about it, told her I had severe anxiety while driving and that I wanted to find a way to stop being so afraid.

She said she would refer me to an anxiety program but didn't know if and when I would be accepted.

To think that a bad pothole started all of this.  Amazing.

Do any of you have any suggestions for me?

Thanks for reading!

Utter Exhaustion

Hello all,

Wow, two posts within a week!  AMAZING! 

I know.  I have found something "acceptable" to write about.  Imagine that.

Is it interesting?  Maybe or maybe not, that really is up to you to decide.  Is it whiny?  I think so, so if you do not want to read about whining STOP right here.  It will only get worst from here on out.

I am tired.  Really really tired.  All the time tired.  I can easily sleep the day away.

I am in a Chronic Fatigue Flare.  It is very very hard for me to do my day.  Of course added to the exhaustion is the pain, but really even though I hurt, and indeed the other day I could have sworn I had been hit by a bus, it's the tiredness that gets to me.

You can explain pain to people and to some extent they understand.

I find it very hard to explain this tiredness to people.  When explaining, to me it just sounds more like I am being lazy.

I want (though not overly motivated) to do my work, I want to read, I want to write, I want to watch TV and be able to tell someone what I have just watched.  I want to drive and not be terrified that I will not see something crucial and cause a major accident.  I want to be up from morning to night without having to take a nap.

Coffee just doesn't do it anymore and not having coffee just means that I can't stay awake at all.  Without coffee I would fall asleep at work, fall asleep at the wheel while driving fall asleep just about anywhere.

I don't have any energy.  Going up stairs is a martyr, I just want to take a nap once I get to the top.  I am afraid of tumbling down stairs I am so tired.

Wikipedia explains Chronic Fatigue Syndrome this way: http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome.

Unrefreshing sleep, post exertional malaise.  What do these mean to the common person who doesn't have this issue?

I am being told to go to bed later by my psychiatrist to help me sleep better at night and solve this exhaustion I feel.  But she is trying to treat the depression, not the chronic fatigue (CFS).  The depression and the CFS are very linked in that the less I can do, the more tired I am the more depressed I tend to be as I just can't accept this current state.

I am tired.  So tired, my home is messy after it being clean just a week ago.  I have been resting trying to recover from the holidays and the prep for it.

I did two days of cleaning and prep work for having company, stayed up later, cooked a feast for my family and made it but now I have trouble taking down the decorations, doing everyday cleaning, the cat litters need to be done, the dishes, the vacuuming, the laundry etc etc etc.

The other day I just couldn't get up and going, I was in pain yes, a lot of pain but the exhaustion was so much worst than the pain, I called in sick from work and stayed in bed almost all day.  I hate days like that.

Happy New Year!

Hello All,

It's 2014, a brand new year.

Sorry for not coming to visit you more often, in fact it has been about 5 months or so.

You know how life is, it gets in the way of doing some things you want or should do.  I have been slowly getting back to full time work and the adjustment to that has been taking most of my time and energy.  I have been full time since December and it has made me so tired, what with it being winter and all.  It has also been so cold around here that it has caused my CFS to flare something awful.

Another reason I have not been here is not that I have had nothing to say, it's more that I have had nothing "acceptable" to say.  I have all these things inside of me, burning to come out but it is not acceptable to talk about them.  Not here, not anywhere.

If I let it out, it might hurt people.  Doesn't matter that keeping these things in is hurting me.  As long as it doesn't hurt other people then that's OK  My blog is no longer a safe place to let out my feelings or my thoughts.

It used to feel good to write here and let out in the universe my negative thoughts or feelings.  To know that I could be "heard" by a stranger somewhere helped to unload the bad and focus on the better.  But it's not only strangers reading my blog, and for that reason I needed to learn to shut up, to stop sharing, to keep things inside and not let go anymore.

Once I stopped sharing about the stuff that mattered, it seems like sharing the everyday stuff didn't seem very important or interesting for that matter so I stopped writing.  Sorry for those who were interested in reading my blog, but it just could not be helped.

For the reasons stated above I think I will put my blog on hiatus until I can come back and share with you all something interesting.  I don't know how long that will be.

Thanks to those who have taken the time to read.