Saturday, March 18, 2006

The Blind Men and the Elephant

Shifts in perspective never cease to amaze me. See above the work of pavement artist, Julian Beever, viewed from two different angles. It's like that when I come to write my blog. One minute I feel I have semi interesting things to say, the next minute I feel it's all random trivia and who am I to write it? I'm sure I'm not alone in this vacillation.

Sometimes I feel an urge to explain more about the illness I've had for over 20 years. During the worst years I was so severely affected I couldn't walk, talk, watch TV, read or do anything really, other than lie in a dark room in constant pain. Today my life is much more bearable but it still carries huge paradoxes.

When I go out to meet friends they see the best of me. I get revved up on adrenalin and (for an hour or two) I can look as well as the next person. But I always have symptoms of physical pain, weakness and a kind of 'cellular gasping' feeling that is hard to describe. It's as if my cells have asthma and are begging me to lie down. There can also be a 'poisoned malaise'. Like a bad hangover from a cocktail of horse tranquilizers with a dash of arsenic. And the only way I can 'afford' to get out for a few hours is to spend the other 70 or 80% of my day horizontal: ie bed or sofa.

No wonder Joe Public can be skeptical about ME/CFS. (God awful shambles of a name for an illness but I won't get started on that). If I saw myself out and about, *I, myself* would think I looked well and I must be exaggerating about my health problems. I really would.

I've reached a point where I'm trying to stop caring what other people's theories/judgments are. I remember someone once told me that their boyfriend thought I had anorexia. I don't. But that's a terrible illness too. He just mistaken, not malicious. In fact, I hope to live my whole life believing that no one is ever deliberately malicious, just misinformed. If they knew better, they wouldn't judge or speculate erroneously. Myself included. Further reading-



Janette said...

Hi Ciara,

Not sure how I got here, but here I am. I just wanted to say that I can totally relate to your post. I was lying in bed today thinking almost the same thoughts. Yesterday I managed to get out and about in the big wide world for four whole hours, feeling somewhat normal, at least I thought I was. If I actually had to have a conversation lasting more than three or four sentances with anybody they would probably have disagreed. Today I feel like Ozzie Osbourne ( no disrespect intended ) and somebody has definately given me that cocktail of horse tranquilizers, could it have been the nice people in Borders, I think not. I started a blog type thingy last year but have kind of given up on it as basically it was me rambling to myself.In case you are wondering I also have ME, 16 years in the land of fog and pain wondering when it will go away. Anyway I wanted to say Hi and if I remember how I got here I wll come back and visit again, take care and keep writing.

Ciara said...

Thanks Janette,

sorry to hear you are 16 years in the ME prison too. Sometimes I try to see it as a job. Other people go out to work; we have to work hard at bearing our illness and all the losses it carries. And it's not a 9 to 5 job either...

Biomedical is 20 years behind where it should be because of all the misinformation and psychobabble.

Thanks for commenting and come back sometime. Feel free to leave the link to your blog.


Janette said...

ME as a job.......Oh how I wish I could be made redundant, on saying that it feels like that is exactly what having ME has already done.
If I manage to leave a successful link you are welcome to go have a look although I have not updated it in ages, hope today has been a good one, take care

Sue Jackson said...

Hi, Ciara -

Thank you so much for your comment on my blog. It's exactly what I had hoped to hear when I started it. This illness is so isolating that I feel a strong urge to reach out to others who are living similar lives. I enjoyed reading your blog and can completely relate to your comments about how others only see you when you're up and don't see the hours of lying flat before or after. Thanks for writing - I'll be back!