Suffering from ME/CFS can be problematic if people do not understand what it is, how it affects you and what can trigger it.
ME/CFS is short for Myalgic Encephalomyelitis, also referred to as Chronic Fatigue Syndrome. ME/CFS is a long term chronic neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune system. Signs and symptoms vary from person to person, but a classic picture is a recurrence of fatigue that can come around by physical or mental exertion. Those affected may have disturbed sleep, nonspecific muscle and joint pain, headaches, sore throats, swollen glands, mental fogging, and so and so forth. Symptoms can be triggered by coughs, colds, illness, stress so on and so forth.
What I learnt from the Hospital after I was diagnosed when managing chronic fatigue was all about pace. Avoiding the temptation to boom or bust. A boom or bust cycle is when I become overactive when I feel better, leading to an increase in symptoms and a decrease in function.
To manage it, I need first to monitor the cycles of fluctuating activity levels and symptoms, which is a common feature of ME/CFS. Then limit the activity as each activity may have an element of physical or emotional or social or cognitive.
I often find it hard to explain that I am sick and how I am sick. I find that people who have not come across ME/CFS before struggle to understand what it is. Whereas people who have come across people with it before understanding. Sometimes I feel that It is my job to help raise awareness, but I think it is just finding a way to explain it that people understand.
It does not stop me from being happy. Nor does it stop me from achieving my dreams and goals. We are all given different lots; some are smart, some athletic, some beautiful, some brains. What is important is that I do my best with what I am given; enjoy life, be kind, be grateful, love and be a Christian.
Lots of Love,
Isabel xXx
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