I’ve just woken up. This is a difficult part of the day – it takes me at least an hour and a half to kick my body into gear, often longer. And force isn’t going to help. I slowly raise myself to a sitting position and stay there for a little while; assessing what hurts and what feels wrong. Yep, today is going to be a bad day. Everywhere hurts with an inexplicably intense ache. My brain feels foggy, and I can’t focus or form thoughts past “maybe I should try having breakfast”.
Some of this may just sound like a horrible hangover, but imagine if this didn’t go away during the course of the day – imagine if it continued for months, or years. This morning routine has become a part of my life now. I have Chronic Fatigue Syndrome. Alone it’s hard enough to deal with, but often CFS is present along with many other co morbidities (conditions that occur alongside one another). Among others, I have also been diagnosed with Irritable Bowel Syndrome, horrible migraines, and extremely painful menstrual cramps.
CFS is also sometimes referred to as Myalgic Encephalomyelitis (or ME for short, since the long version is difficult to say and to remember). It isn’t really that well-known, or understood, and statistics relating to the prevalence of the disease are pretty difficult to come by, since different definitions and misunderstandings can affect results. However, in 2002, the prevalence in Australia was thought to be between 0.2% to 0.7% of the population – approximately 180,000 people.
You might be thinking – that’s a really small percentage, why do I need to know about this? Well, while it is a small percentage, keep in mind that many cases often go undiagnosed – or worse, misdiagnosed – so that percentage could be much higher. And, also, what if you were to get it? I had no experience in this area prior to my diagnosis. I currently have two other friends with CFS (one also suffering from Fibromyalgia), but I have only met them in the last two years.
I have spent ten years of my life trying to figure out why I was so sick, and why I couldn’t do things that other people my age could. It can be very disheartening and depressing to be trying to get on with your life when your body just won’t cooperate, and your doctor is telling you everything’s fine.
First of all, what does it feel like? Symptom descriptions can be varied, but CFS is often characterised by the following quote taken from the ME/CFS organisation of Australia’s website:
“Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children.”
Now, most people would have experienced one or two (or perhaps more) of these symptoms at some point in time, but remember that we’re talking about an extended period of time, here. There are more symptoms that come in to it, but these ones make the bare skeleton. While Chronic Fatigue Syndrome is a relatively decent name for the condition – since its main symptom is that of fatigue – it is not an entirely adequate representation of what sufferers experience.
Personally, I experience almost all the symptoms that any CFS test can throw at me. However, my CFS is still not referred to as ‘severe’. This is because I can still look after myself most of the time – I can walk around my Uni when I need to (although it wears me out!) and I don’t need a wheelchair, or someone to help me wash my face or get my breakfast (although it’s really lovely when they do…).
I’ll get more in to other symptoms, causes, and treatments during the next blog post, but for now, just be aware that there might be someone near to you (perhaps a friend of a friend?) who is suffering with a chronic illness. Most of the time, they won’t want sympathy – just a bit of understanding that it isn’t ‘all in their head’.
Check out the other installments of Bethwyn’s inspiring story.
Also check the related topics:Chronic illness