One of the hardest things I had to do during my recovery and illness was explain my symptoms to people and the reasons I couldn’t do everyday things. On the surface, if you see someone with CFS, unless they’re in hospital or in bed, they don’t really look ill. This was one of the hardest things for me to get my head around and it used to really, really frustrate me when people said, “Oh, but you look great! What’s the matter with you?!”. With hindsight, I’ve come to understand that people express concern in different ways and to love that about others. But for those times when you really haven’t got the energy to speak or string sentences together, here is what you can show or give others to help explain your symptoms and situation:
CFS is an overwhelming, confusing and isolating illness which is debilitating, frustrating and feels never-ending.
Symptoms of CFS
Some symptoms of CFS include (but are not limited to!):
The clue is in the name, but it’s definitely more than “I’ve had a long day at work- please leave me alone” tiredness. Imagine having the worst hangover you could ever fathom, combined with flu and malaria, every single day. This is just a pinch of what people with CFS live with on a daily basis.
Feeling wiped out after a simple task
Putting clothes into the washing machine or picking up the vacuum cleaner used to be my biggest triggers. When I get inside my head too much, I clean, so I always went to cleaning when I needed to ‘do something’ (ie. aside from staying in bed and feeling useless). Despite my best intentions, I would usually end up back in bed or on the sofa breathless about a minute later.
Not being able to sleep
Now, hold on a second. Surely, if you’ve got CFS, sleep should be no problem for you! What’s going on?! Chronic insomnia and horrendous sleeping patterns are also major symptoms of Chronic Fatigue Syndrome. At my worst, I slept for about 22 hours a day on and off, and often I would wake up at 11pm, read until 2am, sleep for 20 minutes, then be up again until 7am. Then, when everyone else was getting up to start their day, I’d be about to sleep properly. This kind of pattern takes months to crack and get back on schedule, but to a greater extent, you really can’t help it. Imagine this every day for months or years, and you can see how frustrating it could be.
Pain, headaches and muscle aches
All over your body. I remember even moving my fingers and toes at one stage was practically impossible and incredibly painful. It’s scary and it’s real.
Unable to cope with light or slight noises
I became hyper sensitive to noise especially. Even the slightest noise would send my nervous system into a panic that I found it difficult to calm down from. This might sound like an exaggeration, but it really isn’t. I could stand some light coming through my curtains, but found it easier to rest with the covers over my head. Light interference always used to cause unbearable headaches and migraines. Hence, busy shopping centres and supermarkets had to be avoided.
Beautiful head-in-hands sculpture-taken from here
Intermittent flu-like symptoms
Lowered immune system, fever, being unable to regulate your temperature, swollen glands, allergic reactions to things you used to be fine with, dizziness, the list goes on…
‘Brain-fog’ and other neurological symptoms
On a really bad day, I used to slur my words (so much so I apparently sounded drunk), forget really simple and usually memorable bits of information, forget vocabulary, experience balance problems, ringing in the ears, and so it continues.
Click here for more on brain fog.
Everyone is different, but for me, these were the worst symptoms. For a more extensive list, please visit ME CFS Australia’s website. Even now, if I haven’t been looking after myself properly, I very occasionally slur my words at night, but that rarely happens. As soon as it does, I know I have to slow things down and put myself first.
Please feel free to share your main symptoms in the comments below. It might feel sometimes like you’re alone, but you’re never alone. Please become part of our community through the Facebook page and we can help each other.
Love and rest,
Click here for more on diagnosing CFS and click here for some advice on dealing with doctors.