As some may have noticed, all’s been quiet in CinderBear’s Wood for a couple of weeks now. Then this morning I went to write a post and stopped after a mere sentence. Should I carry on as if there’d been no gap? Explain it away as life having got in the way? Claim to have been virtuously and diligently working on my writing? Any of these would be easy to do. And be untrue. Still I hesitated. . . and then it hit me; what’s the point of doing this if what I’m writing isn’t true, if I don’t occasionally delve into the emotional, personal or controversial? After all, this is one place that is meant to be about me: who I am, what I’m interested in, what I’m doing, sharing opinions, experiences and ideas. Yet even though the reason for my silence is a part of me, I hadn’t intended to mention it at all. I wouldn’t say I’m ashamed or embarrassed, and it’s not a secret. It’s just. . . not something I’m entirely comfortable talking about, and it’s simpler not to. And I think I have to try and change that. So here goes.
When I was about 9, I was diagnosed with Post Viral Chronic Fatigue Syndrome. (Also known as Chronic Fatigue Syndrome, ME, and various other titles all essentially meaning the same thing) There’s plenty about this on the internet, but I’ll give my break-down version of what it is:
- Post Viral – pretty obvious. It usually happens after an illness. Although it can also be triggered by physical or emotional exertion, stress, and a whole load of other stuff.
- Chronic Fatigue – again, obvious. The tiredness is chronic, bypassing exhaustion by a mile. (Strictly speaking ‘chronic’ refers to the long-term nature of the condition, but it fits how I use it too)
- Syndrome – a collection of symptoms that are often grouped. In this case, there are many possible symptoms and everybody can be affected differently and to different degrees.
They don’t know for sure what causes it initially, but there’s damage done to the immune system for which there’s no treatment, except some things might help individual symptoms for some people. My consultant at the time said that children tend to have the condition for 8 years or so and after that it may sort of go away, but it would always be a possibility; lurking in the background to potentially be triggered by any stress or severe illness. For me it didn’t work out that way. Which means that from middle school until today, I can have a cold for a week and be post viral for two, and in a reasonable year will be pretty much incapable of doing anything for a total of three months out of twelve. In a bad year. . . let’s just say that once I was down for a whole month straight, and wasn’t really well from November of one year till the end of summer in the next.
In any case; I’m here, I have it and I’m stuck with it. It’s never going away. Unless they come up with some new miracle treatment, but I’m not holding my breath! So when I’m well, I’m brilliant, and I deal with the not-so-wells as they come. Actually, in a way it’s because of the Post Viral that I really took up writing again, because it’s one of the first things I can do as I start getting better. (Besides the fact that I just love writing and get all antsy when I don’t for a while. Like recently) Oh, one more really important thing: it’s not just me that had to learn to live with it, it’s my family as well, and while they may not feel as lousy as I do, they sure have to put up the moods that are usually a part of it!
I’m not going to go on, but I thought this should be said somewhere. Maybe being a bit more up-front about it will help me deal, and other people to understand. The main reason I don’t usually say anything unless I have to is I prefer not to think about it, and if I have to explain then I have to think and acknowledge and analyse ‘how I’m feeling’. . . It’s just so much simpler to make up other reasons, or when people ask me how I’m doing, to say I’m fine. For the purposes of this blog however, if anyone is interested in hearing more (I don’t know why you would be, but then I’ve lived with this for forever so it’s all familiar ground to me) then please feel free to ask questions, email me, post comments, or whatever. Have a chat, compare notes, try and help promote understanding about this condition.
From someone still not right but hopefully heading in the right direction, (two weeks getting on for three is plenty long enough surely?) sat glorying in the sunshine for a change!