20 May 2008

Let's talk about CFS!

So, I suffer from Chronic Fatigue Syndrome. I've mentioned it here and there on my site and my blog.

It's ok.

My cats (this is Assepoes btw) really like me that way, because my need to rest just gives them lots of extra snuggle time... :-)

My social life however is pretty non-existent. Yay for the internet, otherwise I would be a complete hermit. Luckily I can throw gummy bears at people (on facebook), or twitter to give a sign of life if I can't muster up the energy to call or write/mail.

And I am lucky compared to others, as I can work (part-time only). Well, I couldn't before, so I am getting better. At least, I refuse to believe that this is un-curable, but it may take a long time. Like years and years.

CFS kicks in by being triggered. Through a physical and/or emotional crisis, usually a bit of both. Oh, and living in pretty extreme stress for a long period of time will do too. For me it's a logical result of what had been going on in my life, and by the time I went to the doctor to get diagnosed I already knew what was going on, the diagnosis was no surprise.

Still, I was so relieved to get the diagnosis because it gave me something substantial to work with. Before that I just had these seemingly unrelated symptoms and ailments that were always waved off as stress-related and unrelated to eachother and therefore not important.
I got a great deal of not being listened to (you're too young to be this tired, you're making it up, you're depressed, it's autumn/winter/spring/a hot/rainy day, so everybody feels a bit tired, etc.) to "helpful suggestions" from professionals, telling me to go out, take dance courses, even choosing a mate (I'm not kidding you!).

So by the time I got the diagnosis I had been living with it for some years already. I quit my studies in late 1999 when I was 21, 2000 was turbulent and it must have started in the course of that year. It just didn't look like CFS back then because I was going through a crisis and was such an emotional wreck that I thought that was part of it. Over the years I learned to cope with my post traumatical stress (PTSD English/Dutch) but the fatigue stayed loyally... it was only in 2006 that I was diagnosed!

I am not being treated for it. Not as such. Since I already had learned to live with it and doing what I could on my own my doctor could only recommend taking more magnesium and omega 3, and that was that.

Living with it is hard work though. This is how it is for me:
  • +++ I can't hurry. At all. So I get up early to get myself ready in the morning, doing one thing at the time and pausing when I need to. It takes me about 2 hours every morning to get up. If I do hurry in the morning, I "crash" by 11-12am and that's it then. Back to bed; back to square 1. And general rushing to get things finished also doesn't work anymore. I do what I can, and have to leave things unfinished.
  • +++ I can't improvise or act impulsively anymore; doing so would cause an immediate burn-out (= back to bed & recover for 2-3 days). This really sucks though: I have to plan my life rather rigidly now where I used to be spontaneous and adventurous before. I have to get up and go to bed on regular hours. Anything that upsets my rhythm makes me ill afterwards... So I live an extremely regular and boring life. ;-)
  • +++ rest, downtime, naps, recharging the batteries. Even if they require cancelling dates or class or taking afternoons or even days off.
  • +++ eating consciously! This is quite a challenge. I've never been a big eater, but being long and thin I always could eat whatever I wanted. Even more, I'd better eat as much as I can because I lose weight way too easily thanks to a nervous constitution. So with CFS I find that I can't digest much of those fattening foods anymore so byebye dairy, sugar and meat. As a result I have to fight to keep on my weight and not lose any more, so I always have something with me to eat since I easily get low blood sugar. Well, I've found new friends in nuts and seeds who fit in pockets and can be nibbled on throughout the day...
    I don't cut off all the meat/dairy/sugar though, but have made adjustments: water, juice and tea instead of soda, honey and goat's milk in my coffee and all sorts of goat's and sheep's cheese (but rather some veggie-based spread on my bread), and just occasionally (red) meat. Mostly fish or tofu things.
  • +++ Besides the eating consciously, making sure I have my daily share of vitamins/minerals/... (and also include periods of not taking anything so my body doesn't get used to it) I also do quite a bit to cleanse my body every now and then. Toxins and old emotional traumas are said to stay in your body and clog up your organs and eventually lead to illness, fatigue being one of the warning signals. On a daily basis the cleansing involves just drinking lots of fluids, but every now and then I do a liver cleanse (very effective, but let me spare you the details though ;-) ) and do other strange things like drinking clay water (yuck but it works!).
  • +++ keep moving. I've never been a sporty type but I always hiked & biked. I don't have a car so I do all of my shopping on foot, by bike or by bus. I've been doing this for years and as long as I don't keep buying cute little sécretaires on impulse I'm fine...(thanks Monique! ;-) )
    So I'm not fit at all, but at least I have this. And I've found that I can go biking again for fun too, and for a bit longer periods than before. It depends on how I feel that day, but if I'm free and well I go for it. Very handy: I live near some gorgeous walking and biking routes!
    Also important: yoga stretches and taichi/qi gong.
  • +++ clumsiness! This was a dreadful discovery for me...LOL. No really, I used to never break things. I love and excell at working in tiny details with a sure hand and I take care of my things. I'm careful. And yet I've never broken as many plates and mugs (and yup, glass beads too) as the last years.
  • +++ idiocy. Honestly, this is for me the most embarrassing effect of the fatigue. There are moments when I can't think or speak anymore. As if my brain is turned off. This is very annoying, especially at work or school (at home I don't mind, the kitties understand me without words anyway). Sometimes I'm physically present, but just not able to do any decent mental work. A bit like a computer freezing up (wish I could increase my RAM or defragment my brain...). The only thing that helps is (reboot...) rest up and if I can do that it's usually better the next day. But you can't always do that at work or in school and certainly not during exams...
  • +++ having a lower immunity. If there's a bug going around, I usually get a visit. And strong physical reactions to even "normal" stress.
But if it weren't for this condition, I wouldn't be doing what I am doing - living for my art. It forced me to revise my life completely and make conscious choices that went straight against how I had been brought up. It wasn't an easy process, I had to change my own views first and then I had to convince the people surrounding me too. And then to pave my own path, because there isn't really a handbook on becoming an artist...(unless you count Julia Cameron's Artist's Way of course!)

So it's ok.

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