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.
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