i've written about them here before, and i am not looking for pity or hero labels. i've had those, whether from good intentions or people not knowing what to say. here, i just want to open a window into my world, for a little bit.
i have a neuro-immune disease mislabeled chronic fatigue syndrom (cfids) which, among other things, includes extreme fatigue, inability to rest/sleep, fibromyalgia, muscle and joint pain and body aches, very low blood pressure, neurally-mediated
hypotension, ringing ears, headaches, and many neurological problems. picture the worst flu or food poisoning you've ever had. triple it, add in some neurological symptoms, and voila - you can sort of picture cfids - for life.
i've had physical pain - chronic pain and disabilities - for more than half my life. i am used to pain. but the neurological problems of cfids are really difficult for me to deal with. i am unable to read non-fiction for more than a few minutes a day. i am unable to drive for more than 10 or 15 minutes at a time. when i am in groups or in situations with a lot of noise or inputs, i 'freeze' - my brain goes on lockdown and i can't really see or hear anything. the only thing that could give this state away is my eyes. my husband, ed, has often said that he looks at my eyes to see how i am doing. more times than not, he's had to pull me out of a situation and drive me home, putting me to bed to rest until i come back to myself. he didn't always notice this, though, and had to train himself to watch for physical signs, to protect me. no one else can really tell, since somehow i am nodding and standing upright. i also have a problem remembering words. for a few years after i got cfids, people would act as if i were stupid, when i could not remember a word. now i sort of laugh and say "cfids moment" - but it is uncomfortable, to constantly tell or remind people about my disabilities. i used to have a really hard time listening to music, and talking on the phone. now, 7 years into having a cfids diagnosis, i can listen to a little bit of music, and can talk on the phone and understand the conversation (for the most part).
i am highly educated - i have a BA and a MA and am almost finished with my PhD - i am working every day on my dissertation...one paragraph a day, if i am able. i have no idea if i will be able to finish it, yet i am loath to give up yet another dream. writing on gather has been wonderful for me to release my creative energies, and feel somewhat normal again.
cfids destroys dreams and lives. everything i've worked for in my life is currently unavailable to me - a teaching career at a large research university, global travel, promoting study abroad and intercultural sensitivity. i am unable to work. i definitely could not do the job i'd planned for, studied for, educated myself for. i have a new reality - a wonderful one, with a loving husband and a precious child. i would never give these up, and count myself lucky to have these. often, people with cfids have complete desolation in their lives - their spouses leave them, they are unable to have a job, they don't qualify for SSD because of the social and medical prejudices in our society today.
i love my life. we chose to live in a small, rural area for several reasons - mostly, that i find my soul on/in water. i told ed that if i had to give up everything - activities, friends, diversity, eating out, theater, music, etc., i needed to have ONE constant in my life that i love (besides him, of course!). we've lived on a lake since we've been together. i am lucky that he understands this need - and feels it himself. when i look out at the lake, i feel soothed, calmed. my body floats away, when i am in the water, and i am just left with my SELF. this is incredible, to be able to live here.
i look fine. how do i feel? well, for everything that i am able to do, there are 100 things i am unable to do. for every activity i write about on gather, i don't write about the hours spent lying in bed, utterly drained. for every meal that i cook, i don't talk about how i have to portion out the prep work throughout the day - chopping the onions at 10am, when i have a little bit of energy, and putting them in the fridge til later. for every activity where we go out (meijer gardens, visiting my parents), i have to spend the next day or two in bed, unable to move. when we went to seattle, for 12 days, i knew i'd have to pay for it. my body could not stand that assault! and it hasn't - i have been in a 'crash' (as people with cfids call it, when we get a huge 'flu' that won't go away) for a month now. i can't believe that i long for my "normal" unhealthy state of being. cfids is all about making choices, and living with the results.
it is hard - lillie is a very active child. ed works at home so that he can help me with her. he also stays up really late at night, to finish the work that he is unable to complete during the day. lillie and i read a lot, and i spend a lot of time on the floor playing games with her, or lying in bed watching her puppet and talent shows. it is difficult. every mother has guilt, but a sick and disabled mother seems to always wonder how a healthy mom could do better. i know - i am (mostly) over this now - i give lillie more love than i could ever imagine, and that's a great start to her life.
today, may 9, is cfids awareness day. some years, i have been able to send letters to my congresspeople, asking for notice and funding. some years, i have been able to write to my friends (the ones that have stuck around), telling them how my life is right now, and thanking them for their persistence. some years, i have been in bed and unable to do anything.
right now, there is no test for cfids, and no cure. there isn't even really any treatment. if someone tries to tell you about CBT (cognitive behavioural therapy), they haven't had cfids. the best advice i ever got was from the chief of infectious diseases at a large medical research hospital. he said, "having cfids is akin to having late-stage AIDS. your body is really sick. you will want to try anything to help yourself. everyone and their brother's cousin will have a 'cure' for you to try. right now, there is nothing out there. please don't waste your money or your hope on these. call me at any time, and i will be happy to talk with you about anything you want to try. when there is a treatment or cure, believe me, you will know. there are too many people sick with this to not have a huge splash of PR when something is found." and you know - he's right. from magnets to herbs to vitamins to infrared to chi machines, i have been recommended everything. of course i want to be better. a few weeks ago, researchers identified the twisted gene (nervous system and HPA axis) that cfids resides within. hopefully, this will lead to more research, and possibly a cure within my lifetime.
meanwhile, i am grateful for my inherently happy psyche, a loving family network, and the time that has passed - slowing my disappointment and craving for a different life or body. when i first got sick with cfids, someone told me, you'll be able to smell the roses. i looked at them like they were crazy. yet now i do smell the roses - actually, i photograph them. i have grown into this body, into this disability. i know my limitations - one thing a day is my limit - making cookies, or going to the post office, or taking lillie to library class, or going somewhere. the next day, i will need to rest, pay my dues, avoid a crash.
it's a wonderful life - life *is* what you make it. the pain and problems are seemingly insurmountable - yet i've found a
level of joy and enlightenment in living that i didn't know existed...and i would not trade that for the world.
here are some of the articles i've written about living with cfids
cfids
everest
seeing the sunset
pushing the envelope
copyright 2006, jessica voigts
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Comments: 36
First off (((((hugs))))). You are indeed a brave and wonderful woman. I've treasured your photos and stories each day since I arrived here, and now I treasure them even more.
This was incredibly informative. I truly hope that the discovery of the gene in which cfids resides leads to progress - rapid progress - in treatment.
How lucky Lillie, Ed and all of us at Gather are to have you in our midst.
faith - thank you! i do feel like i am sharing a journey - and the good and the bad. thanks for not running the other way! :)
ed - ILY. always will.
cheryl - thank you! it is a struggle. most days, i feel like i got hit by a truck. some days, i feel like i got hit by a fleet of trucks. yikes!
donna - thank you! i have been called those things, too. it is so hard to live with this, to live with such pain and problems. like we'd choose this, or make it up? please. glad your friend found the way to get through it, too.
alice - glad you're doing better now. those good times have to sustain us, don't they? sorry you have fms and arthritis. yikes. fms is a huge disability in and of itself. thanks!
gisela - thanks! i tried to make it informative, as well as a daily observation of my life. i feel pretty lucky to be at gather. my social and intellectual world has expanded exponentially, because i can do it all on my own time, when i have energy. thanks for the hugs!
aunt carol - thank you! i appreciate it. you've seen my struggles. but usually i don't want to talk about it. today, i did.
thanks again, friends!
cathy - thanks for your comment! wow. :) i love being in inboxes and being read - thank you!! i hope that your friend finds help. i am more than happy to email with her if she'd like. it is important to have good resources, when you are trying to figure it out and then get first diagnosed. i'm happy to help.
Thanks for posting that. I learned from it.
I also do not think Lillie is being shortchanged at all. You give her so much; I know this just by reading your articles.
You've alluded to your ailment before, but not to this level of detail.
My heart goes out to you, and I hope, sincerely, that medical science advances to give you some relief SOON.
Meanwhile, you have all my admiration for fighting the good fight, and putting my petty problems into perspective.
kevin - that is one of the reasons i posted this on cfids awareness day. thanks for reading and learning!
ed - thank you. i often wish that i'd just FINISHED the dissertation before i got sick. but i did everything well on my timeline, and am still ABD. i had no idea it would be this difficult, when i first got sick (good thing). at least all my orals, etc, are out of the way. who knows if i will be able to finish - if i do, it will be for ME. i certainly won't be able to work.
nancy - thank you, esp for the lillie comments! i do try hard. i have to tell her no a lot, though. no, mama's sick. no, mama's tired. etc etc ad nauseum.
eric - no one's problems are petty, and no pain can be compared. life is hard for everyone, in some way or another. thanks for your comments - i DO hope they find something, soon!!
kathryn - yes, you know. this similarity was certainly unasked for, wasn't it? yet it brings us closer together - through experience. thank you!
If I take care of myself now, I am able to work fulltime. People just don't understand, though, when the illness doesn't register on some doctor's Richter scale. I am watching my brother fight it now and hope they one day figure out a cure.
alankrita - thank you!
moya - it is a nasty trick of nature, isn't it?
carl - you know, that is so honest. so many people don't say anything bc they don't know what to say. just like at a funeral.
donna - thanks for the hugs!
mandi - i knew you'd get it!! 2 hrs would be a miracle for me. i'd say abt 15 minutes....if i had to work an 8 hr day, i would be in bed for months - so sick. argh!!!
rboert - you're right. everyone with cfids has some similarities. dr bell, i think, has a simple test - if you come into his office with a water bottle! of course, that is only one symptom. i am always thirsty! i have been taking recuperat-ion and that helps some, but still.....thanks!
mary - thank you. i am so sorry abt your invisible disability. yes, the comments are tiresome, aren't they? why do people judge.
i just started a disability forum group - please come join, anyone!
wow that's a mighty ambitious article for someone who doesnt"work." there is a possibility that your unique talents could be recognized by a local program and you could design your own job, taking into account your
differently ableness, or should wse say your superior
ableness. I don't know anyone that writes any more than you do and especially publishes as much.
Myself, I get so tired and fall asleep after a short while
and don't get much done at all. aaaaklllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllsv, or things like this actual event now may ruin my whole topic so I get a little discouraged. jjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjjj; at times! But I go to the VA hospital for physical therapy 4x a week and various appointments so i see vets with terribly mangling injuries such as faces shot or burned off, all limbs gone, mental disturbances such as depression and pathological anger and even wounds from failed suicide attempts. Last year I slipped away to the other side twice--while a patient getting surgery on my knee and leg. I was supposed to be there for five days and finally left after 51 days of treatment, they saved my life from toxic shock, then had to continue IV antibiotic treatment for seven weeks. I was in a coma for 9 days , with asssisted breathing--on discharge I couldn't walk and several months later am still on crutches and need care at home to perform daily living tasks. After a fall, I had surgery on my right eye for a torn retina. For about a month I couldnt see more than shadows and flashes and spots but now all is normal again with my sight. Due to a spinal block that hit a nerve, pain is my constant companion, in my buttocks, my back, my legs
and my feet. I am ashamed to say that I wanted to committ suicide buit did see the error of this before it was too late. My wife is long gone, some people cannot deal with constant reminders that we are vulnerable, human, and getting older and more vulnerable. She stayed for a while but three years later
I still live alone but never seem too lonely living here with my cat. What a great life I have had, lots of travel and adventures in several countries, skiing, scuba diving in hawaii, rock climbing and hiking, marathons and bike rides, camping in B.C. at Glacier and Yellowstone, going to friends weddings and baptisims for kids, coaching and counseling, a couple published books, working as a professor, a psychotherapist, and with the U.S.Public Health Service. Two master's degrees, a PhD and teaching credentials. Friends from many places and walks of life and it isn't over yet.Soon I will help returning vets get their lives back partially by helping them get jobs so that their lives get back to normal, quickly as possible. Yes, I get dammed mad sometimes, but it doesn't last, mostly I feel like the luckiest guy in the world. As hjukmans, we all perceive our circumstances differently. My hat is off to Jessie who, it seems to me, is doing quite a lot and not taking enough credit for it. She is stimulating and motivating others to continue though it is hard to believe sometimes there is a reason for it. So, I always look to others like her for inspiration to keep; me going and to keep me using what I know and dwhat i can do and not what i can't.
i appreciate your words - that was very kind. i am so sick, and it is hard to talk about it. i am impressed with your work to get vets back their lives. it is critical, isn't it?? more than we can ever know. thank you!!!