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Setsunai

Posted by amber | My Diary | Posted on January 23rd, 2011

Setsunai is a Japanese word for ‘sad’ or more eloquently a sadness and loneliness so powerful that it feels as if your chest is constricting, as if you cant breathe: a sadness that is physical and tangible. (from the book Tokyo Vice by Jake Adelstein).

I feel this setsunai. It totally describes how I feel about living with CFS, It is sometimes so overwhelming to have CF and know that there is no cure and you could have it forever. It can be incredibly hard to socialise and watch others indulging in everyday activities that you cannot. You want to sob but you hold it in and the tightness over your heart and emotions is like a strangle hold.

But enough about M.E.

I have recently been thinking¬† of how tragic it is that even though we are now more connected than ever – cellphone, fax, computer – we actually communicate less authentically than ever. Twitter, sms’s and emails are not letters or phone calls. They don’t really cut it as true communication. Remember how fab it was to receive mail – birthday cards, valentines day, Xmas. Now you get group sms’d or emailed. So boring and impersonal. We have become more distant and alienated from each other with these weapons of communication.

And we are trying to use less paper and destroy less forests, yet it seems we are still laden-ed with tons of useless notices at work; pamphlets attached to our card windows and shoved in our post boxes. When do we learn…

And due to deforestation, pouching and our ravenous hunger for land we are endangering tigers, leopards, chimpanzees, cheetah, The list of endangered animals is ridiculous, check out the Worldwide Endagered Animals List.

And while I am bitching … a city near me has run out of water, yet further inland there are floods?!@#$% And we don’t think we are affecting the ozone …

The AIDS pandemic … We are constantly shown on TV;on the Internet; in adverts and at school the dangers of catching or transmitting HIV, but we still don’t wear condoms; and we share needles. We seem to have the attitude that it will not happen to us as we are not ‘those’ kind of people.

Likewise we continue to smoke and lie without sunblock in the sun. Restaurants still subject there patrons to secondhand smoke and we still allow sunbeds. BECAUSE it wont happen to us!

Well I best get off my soapbox and hope that if I try and make a difference and lead by example maybe others will follow too. Check out the South African Lead SA campaign.

One would never say …

Posted by amber | My Diary | Posted on January 9th, 2011

Its probably not PC to start the year with a gripe but what the hell ….¬† Its not like I have any New Years resolutions either…

Not sure of its a chronic fatigue phenomenon or I am just FORTUNATE but if I hear one more person say…

“One would never say you were ill”

“You look great. Are you feeling better?”

“You are really lucky that you don’t look sick”

“So are you back at work/gym?”

“… so you’re better now…”

NO, it does not make me feel good that I don’t look particularly ill.And I dont feel any better because I look ‘fine”.

It doesn’t make CFS any more fun, manageable, bearable that I am not crawling on all fours with a rash, vomiting and looking like I am on deaths door.

The fact that I can smile for a camera, does not mean I am FINE. It just means that I have had CFS for nearly 3 years now and so I manage myself . CFS is my lifestyle, and in order to function I know what I am capable of and fit my life around it.

I don’t go out when I am crying, depressed, tired, nauseous, shaky, miserable and looking like death. I stay at home.

So if I have ONE NEW YEARS RESOLUTION, it is that people stop saying how great I look and I stop getting god damn irritated about it.