I've been wanting to write a following post about my illness ever since I received a first comment on my first post. I know there are others like me out there :-) Today seems to be a perfect day for it, as I can't do much anyway. It's what I would qualify as medium-bad day. I sit here with a gel eyemask over my swollen eye (I'm not quite sure why exactly my body came up with this response to having pushed it slightly over the edge, it's only the second time ever). Obvioulsy it's only one eye, otherwise I wouldn't be able to write, but in order to see sharply, I have to wear glasses over the eye-mask - what a pretty picture! I rejoiced in the fact that the mask and my T-shirt are both blue: at least I'm stylish and colour co-ordinated!
I'll try to do some knitting later, some low brain activity project. The problem I found with these medium-bad days is that I'm not allowed to sleep too much, I have to find something that keeps me sitting and reasonably occupied, otherwise I get bored and am a pain for everyone around me. The idea of writing on the blog is a new try, I'll see how it works out.
Sentences I have heard over the years from the day I started feeling unwell up to today.
The first one that comes to mind was said to me during a date. This "man" (for want of a better word) suddenly said he really liked me, but since my genepool was contaminated he didn't see any future for us (i.e. he couldn't think of marriage). But he'd still like to go out with me if I'd agree to his terms. HA! On a second date he thought of marriage? Pahlease! He definitely had a big enough ego for a whole company. Once I had recovered enough from this experience to be able to tell this story to friends, a wide variety of plans have been developed since, how I could have dealt satisfactorily with that situation: He and I had gone out to a restaurant and I had just started my soup - wouldn't it have been perfect to throw this into his face right there and then?! Well, I'd love to say I did, but in the actual event I didn't. I just went home.
You need good sleep is another one of my favourites. The irony that it's called 'Chronic Fatigue Syndrom' does not mean that you can sleep or that sleep really recharges your batteries.
If I'd be you I'd go and see a doctor - ?!? At that time I had already seen so many of them that I needed more than my own hands and feet to count them. I should have dealt creatively with this situation! I should have thought about getting a signature of all the doctors I saw (with date and time) and then got them printed on my T-shirt.
Today I felt really tired, I know now how you feel. Hmm really? Your legs are in pain/going numb, you are exhausted but unable to sleep, you have to consider whether you have the strength to make it from your bed to the toilet to empty the few contents of your stomach without breaking down on the stairs? I'm so glad to be understood. (G. edited the last two sentences, she feels it makes more sense to non-CFS people. I rarely talk about the actual symptoms. Because if I did, I'd get the 'It must be horrible to get this' monologue, see below.) But then again what can one expect having something called Chronic Fatigue Syndrome. It sounds like we should sleep all day anyway.
You are still young- I never really understood this one. Several interpretations seem possible. Young means healthy therefore 1) you are not allowed to be ill or 2) you are just faking it, because you can't seriously be as unwell as you claim as you haven't reached the dentures cleaning age?
You are young therefore it's not as bad. As bad as what, as if I'd be 80? What do people mean?
What's one (two, tree, five) years in a life? I don't know, what is it? It's time, most probably and it's relative. Maybe it means that I should be grateful that it was only five years that I had to put my life on complete hold while my life as I knew it slipped away.
Couldn't it be in your mind - AH! There it is. Finally, our all-time favourite! My favourite version of this one acctually is when it comes from aunty Emma or uncle Franz who have just discovered the word psychosomatic in a popular magazine. Totally convinced that they found the only true solution lots of amateur psychologists (unfortunately many professionals as well) keep screaning your life for possible undigested, unresolved problems. I my case it was fear of the unknown - I just started university, I was a musician - and we all know they are neurotic - I was a young women - too sensitive. I still lived with my parents - couldn't detach from home. Actually, my mother had to hear that I only got ill, because she couldn't let me go. Go, where? When I insisted that I did what I loved and was sucessfull, I was too busy and I just needed more rest, or maybe - and this is the best - in my heart of hearts I wasn't really happy doing what I wanted and therefore my body sent me this message.
You don't look sick. There are two versions of this, one is actually meant in a nice way. In the case of the second one, you feel like you have to apologise that you are not the image of a sick person. Also really wrong in this scenario: laughing. Happiness is only for the healthy.
Oh my God, it must be horrible to get this. Ah, I thought "a beam of sunlight, someone understands". My hope got shattered a second later with the question if it would be contagious. After I answered that I didn't think so, a monologue followed about "how horrible to get this". I'd had preferred the monologue "how horrible to have this". One year, my parents couldn't rent a friends' holiday cottage (despite the fact that I didn't plan to come along) because my illness was classified by these people as contagious.
There are still a couple of very interesting sentences, but I think I'll save then for another time. If some of you who are reading this have experienced similar things, please leave a comment! I know you're out there reading this blog, so just leave a comment.