So a few days ago Emma Blackery announced that after being unwell for many years she had finally been diagnosed with CFS. Now I feel really sorry for her because while its great to know what you have, being diagnosed with CFS sucks. Really sucks. Not only is the actual illness horrible, but for a long time CFS/ ME was the diagnosis you got if doctors didn’t know what was wrong with you. Fortunately more research is being done, doctors know that CFS is some type of neurological disease, but they still don’t know much about it. Basically you don’t want to be diagnosed with CFS.
One thing that Emma talked about is that CFS is an invisible illness, you don’t see many people talk about it, and as such people don’t really understand what it is. One of my neighbours was diagnosed with ME way back in the 80s when it was more commonly known as “yuppie flu”, basically people thought that it was just laziness rather than an actual illness. But because of Emma’s announcement I’ve seen many people ask “I’m tired does that mean I have CFS?”. Now the first thing I’m going to say is if you’re constantly tired that is something you should get checked out. But you also need to understand that being tired and having chronic fatigue is not the same thing.
One of the main symptoms of CFS is tiredness, but its constant never ending tiredness. I could go to bed tired and wake up still tired. Thats if I actually get some sleep. CFS also causes all sorts of sleep issues. I could be tired and want to sleep but not be able to. Not only are you tired all the time, but doing stuff makes you more tired. Even those little every day things like getting out of bed or taking a shower or reading a book. When I first got CFS I would have to go lie down after getting out of bed because even that was too much. Not only that but you have this thing called post exertional malaise. Basically you could do stuff one day then wake up the next feeling horrible because of it.
Then you have the really fun stuff like muscle pain, headaches, breathlessness, feeling like you’re going to pass out and my particular favourite. Brain fog. Brain fog makes you do some really stupid things, it makes you forget stuff, it makes you mix up words – last year I was constantly asking my sister how her latest driving test went – it affects your ability to concentrate or focus on something. I told my doctor at one point it felt like I couldn’t think. I couldn’t count to 10, I’m constantly forgetting words (fortunately I have Joe to act as a thesaurus), just last week I caught myself about to pour hot water into the tea caddy rather than my mug. Brain fog is not fun.
Every time I see someone say how great it would be to have CFS I get so mad because they obviously think CFS is some excuse to be lazy and do nothing all day. Its not something you want to have. If you’re just tired all the time you probably don’t have CFS but you probably want to get that checked out anyway. If you can relate to the other symptoms you should definitely get that checked out. CFS is horrible and you don’t need to feel like you’re alone.