Saturday, January 03, 2009

When our lives as we know them are cut short.

Recently, in googling a link for my audiologist who has a friend with CFIDS and is still feeling the pressures of the disdain given to so many people with this illness, I ran across This is a blog by a young woman with the same illness I have, but who developed it in 2007 shortly after finishing her Ph.D. in Psychology and while working to get her hours of clinical supervision needed to apply for liscensing. Oddly, enough, her last name is the same as mine and as readers of my blog, know, Clinical Psychology was my profession, too. I was lucky enough to get in 16 years in my chosen work, to have many adult years of freedom, to travel, to sail before this illness took me down. Now it's grabbed her before she's even begun and as I read her blog, I see me in those pages, struggling to make sense of this monster, trying to find a doctor who might know a pittance about the illness and trying to avoid the ones who label you nuts and dismiss you.

Even though most of you reading this don't have CFIDS, I would recommend a visit to her pages. Her writing is sensitive and articulate. She's open. She's very bright. I liked her immediately when I first began reading her blog.

So many of my online cFIDS friends were hit by this illness much earlier than I was. One, still in her teens. Another, the first year into her marriage and plans for having children and going on with her career had to be scuttled.

Despite the toll this illness takes both neurologically and immunologically, despite its tremendous impact on our lives, it's still largely ignored by the general public. Laura Hildebrand, author of Sea Biscuit, has written a moving account of her struggles and helped tremendously in getting us a public voice. She wrote her book mostly in bed lying down with the room spinning, food in a small fridge she kept in her room for times she was too weak to go to the kitchen. She was denigrated, called 'lazy'. When the book was accepted, she had to face her fears of telling the publisher she wouldn't be able to tour. Her agent already knew. An arrangement was set up for telephone interviews instead, or interviews at her home. When finally she went public with the illness in a prize winning essay (which took her a year to write) and a feature on national television, two disc jockeys made fun of her afterwards (well, her illness). In the past, the shame would've hit her again, no matter how much she knew her illness was legitimate. This time, the act of going public, of becoming a role model and advocate for CFIDS sustained her. She was given the chance to speak for those who couldn't speak for themselves. She was able to shrug off their inane remarks.

I'm focusing on CFIDS because that's what I live with, but so many other people have had their lives rearranged by illness or disabilities. It takes changing your life view to come to terms with it. It takes courage. It takes a sense of humor. It takes the ability to say it's okay to grieve.



Lisa Allender said...

Pris--Hi, I hope your New Year will give you some Peace.I've been reading up on the illness you have.It's so tragic, but I like that you are re-framing it--it appears you're viewing it as a challenge, not just a difficulty/tragedy, and that will help, I'm sure.

Annie Wicking said...

Happy New Year, Pris.

Thank you for sharing this with us. Thre is so much going on in the world we don't know about so it wides our knowledge and understanding.

Best wishes,

Pris said...

Hi Annie. Happy New Year to you...and so true.

Paula said...

Hi Pris, I "met" you on the CFS warrior blog spot. You all impress me so much with your ability to write. I struggle with typing and sometimes feel dyslexic (sp?) You mentioned transfer factor. Let me know if you try it and how it goes. I am taking Famvir and want to cry every time I put it in my mouth. I hate it. There are days I don't even take it (dr. would kill me - husband too!) because I can't bring myself to put another drug in my already confused system. Do you feel the same about these antivirals??

cfswarrior said...

Hi Pris-

I was very moved by this. Thank you. It's true that this illness turns our world upside down. I'm still trying to make sense of it and learn to cope with it. I look toward you and others who have lived with this illness as guides. It's so nice to have "met" you. I just love your blog.


Pris said...

Hi Paula
I'm glad to meet so many more wonderful people with CFIDS through CFWarrior's blog, too. My doctor tried me on meds in the anclivir family initially since my HHV6 was so high, but every one I tried inflammed my stomach and mouth so badly that I finally said 'enough'. I then used Lysine, with his approval, even though he said the research on it was spotty. It didn't give me the adverse effects and brought my HHV6down. I think I was lucky in that and am grateful.

As for typing, I do it when I'm resting. When I'm tired, it's as if my mind is frantically trying to get signals through to fingers that won't do what it commands. And yes, I make a lot of mistakes.


I'm glad I found you. You see, you're a role model for me. You're searching and you're honest in the range of feelings you're going through. And yes, it does help to find others with the illness. It especially helps to find people who can cry, who can throw shoes against the closet door (if they're not too heavy..sigh) and yet also be positive. It's all part of the same face. The group of five online CFIDS friends I've stayed in touch with over the past 8 years and I share everything now. If one of us is having a bad period or bad day, the rest of us send love, support, and ideas. When we can do something we usually can't do, we all celebrate. It's not all about CFIDS. We share our lives. I bore them with my poems. Two make jewelry and share that.(They don't bore me:-) When I was first sick, I coulnd't use the computer and the internet was barely beginning. I called area support leaders (none are in my town). All were so negative and the groups sounded like they were oriented around a 'poor me' approach. I never called them again.

And yes, if I decide to take transfer factor and it helps, i'll for sure let you know.


Moineau En France said...

you are right, pris, it is fascinating to read this young woman's account of her feelings as she grapples with the new diagnosis. she is very honest, no fascades... it is hard enough to live with one face with cfids, n'est-ce pas, without trying to live with two or three false ones?

i love how you've balanced her story with that of laura hildebrand. a wonderful blend of new and old, of lessons begun and lessons learned (and learned and learned and learned again). that it is not our fault, that we do the best we can, that this illness is real and that anyone given a 5-minute taste of it would want to cry or scream or simply die quickly. sometimes in moments of great anger with someone, i wish he or she could experience it for just 5 minutes, but i wouldn't wish more on my worst enemy! (or even dick cheney)

and so it goes, as we've discussed, cfids is almost worse than dying because with chronic illness we "die" so many times! and round and round we go through all the stages of grief... and yet, i find that, even as i must go through them all and again, acceptance comes faster and lasts longer with the years of having this illness. if a chance presented its head to fight this thing, believe, me, i would be the first in line to try it; i'm fearless! until then, i shall live my little life of friends, family and writing the days until the sun sets: and then i'll get up and live it again.

love to you for all you do, brave friend ~lt

Pris said...

What a thoughtful comment. Yes, it's true that grief continues to run in cycles. I don't think we would be human if we never grieved our loss of health, but yes, acceptance comes more quickly and lasts longer. Sometimes I think acceptance and repression of strong wishes go hand in hand. I would never make a good Buddhist:-)

Pris said...
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Pris said...
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Pris said...

Blogger tripled posted me.

Renee said...

I am enjoying your blog and find this post very special. The losses that accumulate for those with CFIDS are so many. It is wonderful that the support and encouragement needed can be found online at places like your blog...and CFS Warrior's.

Pris said...

Hi Renee
I've tried to learn more about you and your experiences with CFIDS but the profile says 'no information'. Any other place to find you?