sometimes, when i get into the rhythm of life, and things go swimmingly, i forget how very sick i am. among other disabilities, i have a neurological/immune disease called CFIDS - also called chronic fatigue syndrome. that is SUCH a misnomer. it is like saying that diabetes is a peeing disease. yes, i am tired all the time. more tired than anyone can fathom - but that is the least of it.
feeling like i've been hit by a fleet of semi-trucks - all the time. no break. pain. such pain.
forgetting things all the time - words, history, details. in a MRI scan, a person with cfids has 8% of their brain full of holes. no wonder i can't think.
never knowing how sick you'll be, from moment to moment. sometimes, you feel like you'll be able to cook dinner, or go to the grocery store. the next minute, you're so blown out that you are amazed that you are even standing.
fatigue. i wonder how i can even crawl out of bed, sometimes. even lying in bed is exhausting.
and that's just the tip of the iceberg. but this isn't about how sick i am - it is about how i am able to adapt, and do what we call "live within the envelope" - knowing your limits, and living within them.
usually (after years of living with this disease), i know my limits. i live to the fullest extent that my envelope affords me. i've learned what i can and can't do, and things - life - usually goes along on a somewhat even keel. i never for a moment forget that i am sick. but i can live within this envelope and given what i have to work with, my life is pretty good.
but this past week, i overdid it. thursday, we went to meijer gardens, which was lovely. if it had been just that, i would have been fine. but we piled errand upon errand, since we were in the city, and could go to penzey's, target, costco, a bigger library, home depot, and to eat. this could make a normal, healthy person tired. it totally exhausted me. the car ride home was a blur.
the next day, lillie and i had to bake things that we'd promised for our local fire department's pancake breakfast and bake sale. ever since we had a fire last fall, i will do just about anything to support these men. every month, for their monthly meeting, i take them baked goods. they are always so grateful. so lillie and i made 10 dozen cookies, 2 carrot cakes, and 4 gingerbread cakes. my day was governed in 12-minute increments, when the cookies were done and needed to come out of the oven. no rest, no just being, no fitting into that envelope. for dinner, we had sandwiches. i was too tired to cook.
this whole weekend, my inadvisable energy expenditure on thursday and friday really came home to roost. i've been so tired that i didn't cook - we ate leftovers and sandwiches. this is pretty rare, since i find cooking to be a zen experience for me, centering myself and gaining energy from it. lillie was more energetic than ever, and didn't nap (something i desperately need, to sleep during her nap, too!). luckily, ed is here and can take care of her. but it wasn't enough.
i feel drained. more tired than usual (if this is possible). i have been resting, trying to avoid a 'crash'. when you're sick with cfids, and you've pushed the envelope too far and don't rest, then you go into a crash. this is like a long, extended flu. you wonder why you've done this to yourself.
but the thing is - the whole reason that you push the envelope is because you WANT to do something. you WANT to be normal. you WANT to live a normal life, even if for only an hour or so. it is hard to sublimate all your desires and goals to this disease. nothing is ever the same. you can make a new life, driven by the limits of the envelope. you can even come to enjoy and be happy in this new life. but sometimes, the desire for remnants of the old life surface, and it is pretty hard to resist.
and then you end up paying for it - physically, mentally, and emotionally. you get tired of living with this disease, you long for health and a lack of pain, you lie in bed and wait to get marginally better, so that you can get back about the business of living this circumscribed life.
and it is a good life. i just have to remember to stay within the envelope.
|
|
|
|
rate
email
print
link to this page
Comments: 40
Keep up the good work!
Namaste,
Lisa
Your line, "I never for a moment forget I am sick."
I know what that's like. It is such a cruel fate you've been dealt, yet you do deal with it and so well. It probably seems on some days that everything is too much, yet somehow you manage.
You've got courage, Jessie. And hope. I believe in you.
Wow, you are such an inspiration. I can only repeat what so many are saying to you already. Your spirit is so much bigger than the envelope. It clearly refuses to be contained. But it sounds like your body needs to rest. I can't imagine being in the pain you are in. Everyday. I've had some difficult health problems in my past but never extended physical pain. You are amazing and truly a gift to the rest of us. Your photos and stories are a joy to experience. Sending warm and healing thoughts your way.
You do so much more than I was able to at my worst! You go, girl!
Thank you for your wonderful expression about this illness (CFIDS/FMS) that we both share! You described it so well, I thought. I know, too, how difficult it can be to find even the correct words when everything is so jumbled in your head and to say what you really mean!! You did a great job of explaining the depths and dimensions that these illnesses bring to our lives! Just getting through a 'normal' day can be such a struggle for us and adding even one or two things to that mix can really take the little energy you have. I'm glad that you have your writing as an outlet though! Keep up the good work, my friend!!!
sheryl and clare: there is no cure, and no treatment. sometimes, doctors are able to treat the symptoms (inability to sleep, pain) but it is pretty superficial. at my worst, sleeping, i got 2 hrs of sleep every 5 days. it was awful. you are so tired, and NEED to sleep, yet you can't fall asleep or stay asleep.
recently, they've had some research show two key things: that the dna part that carries it shows it, and that it is the same dna (gene?) part that autistic kids have. i think that when adults get cfids, it might be a form of autism - less, of course, since the brain is developed then.
for years, doctors had no idea what to do with people with cfids (PWCs) and said it was all in our heads (well, duh, it is, look at the MRI). they still have no idea what to do, bc there isn't much that CAN be done, but at least they realize it is a valid disease. hopefully in my lifetime, there will be a cure.
meanwhile, it is the strangest thing to live with. you never know from one minute to the next how you are going to feel. you can't really make plans. you are sick and in pain all the time. once you learn to live with all this, and get through your grieving stages for your old self, then you can start to rebuild your life. but it is always defined by cfids, every second!
i appreciate all your comments - and you know what, every single person has had to deal with something in their lives, and it makes compassion a living, breathing thing. pain, in some form or another, you've all had. i appreciate your writing about it - either in your own struggles (sleepy-eyed, aileen, serina, kathryn, lisa), or helping me with mine.
it does help, to know that people support you - thank you all for that! i hadn't written it in view of looking for support, but rather to talk abt something that is so hard to live with. all your support is a huge bonus - thanks again!
1. sit when you can - it takes less energy to sit than stand such as when doing dishes or cooking
2. If you have an upstairs/basement, try to locate needed items on both floors to avoid having to carry them up and down stairs: cleaning items, vacum etc.
3. Sit and rest when needed, even for a few seconds to pace your energy expendiature.
4. Try not to get invovled with something that can not be finished later if you need a rest. ie: waxing a floor or car
5. Locate kitchen items for the more commonly used items to be readily accessible, not needing to pull them out of cabinets eith from above chest height or below knees.
6. Do plan ahead to be able to predict which activities you can expect to be tired from and coordinate less taxing activities before/after.
These are just few tips that may be helpfull to you and anyone.
Colleen Nielsen, OTR/L
colleen - yes, we have structured things so that these can be done. one-floor house, i would never wax a car or vacuum!! it is too hard. i went through several sessions of occupational therapy to help me structure my days and that for sure helped. is that your job, what is the OTR/L mean?
thanks for the hints - i'm sure they will help more than me! thank you!
" i never for a moment forget that i am sick." You put that well. Over the years, I've had considerable physical pain. Your statement reminds me of a poem I wrote over 30 years ago about pain and asking how in the midst of it I could lead a meaningful life. I no longer have that poem, but I sort of remember a line I wrote. It went something like this:
"Pain demands my full attention
And says, me, me, me!"
Gather is luck and proud to have you among us.
Thanks to all the friends at Gather for your concern for our friend Jessie.
You will be in my thoughts and prayers.
David Lars
joyce - yes, there is always someone worse than we are, and i try to remember that!
yep - i'm happy, and the pain, etc, is just someth to live with. thank you!
colleen - yes, lots of things. i often cook things throughout the day so that i can do a little bit at a time - chop the onions, or cook something (sauteed veggies), etc...then it is spread out more, over the day...ed carries the laundry to and from, and i sit to fold it (or we pull our clean clothes out of baskets)...stool in the shower; hardly ever drive; lots of sitting and lying down, lillie and i do mostly reading and cooking for our together activities! it is hard, isn't it?? thank you for your suggestions!
http://www.ahummingbirdsguide.com/testingforme.htm
nathan - yes, thank you. when i was in japan, i was really into buddhism. i need to read more about it, thank you so much for the link. that is so important, and i am grateful for your help.
I also have small children, 19 months apart, at 4 and 6 years old. Hearing about you and your child is so encourageing. I appreciate your sharing and hope to hear more from you soon.
i know the new research suggests that some of cfids resembles adult-onset autism. that helps a lot, with the research. i wish doctors would get with the program. i'd love a cure in my lifetime!! thanks for writing - i'll go connect. hugs!