75% recumbent 25% slogging about

the days are starting to run together as i try to find the balance between light activity and wanting to do things like i used to. normally, this week alone i would have finished painting my sewing, yoga, exercize, ironing, meditation room which was formally the bedroom my 20 year daughter, laura, inhabited before she found her own place. i would have weeded the flower beds that swirl through the front yard amidst grassy paths. i would have repainted the red adirondack chairs that have become rather messy from my dogs lying on them with muddy feet, leaving them dull and scratched. i would have used my brand new miele vacuum which i've had for three weeks and haven't turned on yet. i have gone out to do a few errands for up to an hour but then have to lie down the rest of the day, so i choose carefully what really needs to be done. i am following the advice of my doctor and taking the meds he prescribed, including giving myself a b12 shot twice a week. the pain and "poisoned" feelings have lessened and i'm grateful for that...it's just the overwhelming fatigue that has me mostly horizontal every day. laura and i are going to destin, florida for a week in may to stay in a house that i'm checking out for a long term stay next winter. i have sworn off winter here in asheville as it seems to put me in a state of hibernation and pain and i feel fortunate to have found a place to go that will be warmer and that i can afford. sometimes my goldendoodle, phoebe, comes over to the side of my bed and gives me a look like, "when in the hell are you going to get up and play with me?" my other dog, gracie, a lhasa apsa, just wants to cuddle up next to me in a blissful state of having mom be still with her. she is much older than the still young phoebe. yesterday, as i was talking to my daughter i was searching through the covers, in my purse, on the bedside table for my phone when i realized i was talking to laura ON IT! this was a humbling experience for someone who used to be aware of the smallest details of life, always multitasking successfully, but we had a good laugh. i go to my gp for a recheck today and i haven't seen him since he wanted to send me to a rheumatologist and i went to a cfids specialist in charlotte of my own volition instead. i will be sure to let him know that fibromyalgia and cfids are very different as he tries to convince me that exercize is what i need, when in fact, following his suggestion put me in a crash for over two weeks. i do think that there is a small envelope for exercize with cfids, but for every five minutes i do something physical, i must stop for five minutes, then do it again as long as the next day doesn't end up bad. it's by trial and error that i will find a balance.

some answers for well meaning people

i was thinking about how frustrating it is to be given advise by loving and well-meaning friends when i try to explain why i can't do something on a given day and all i know is my answer has to create a visual image in their minds in order for them to grasp what i mean. here are some of the regular comments i get:
1. well, maybe if you don't think about it and go do something nice for someone else, it will get your mind off yourself.
2. sometimes you just have to strap on your sneakers and make yourself get started and before you know it you feel better for having exercized.
3. you probably just expect to feel bad and so you do.
4. maybe you're just really depressed and you don't know it.
5. you aren't getting around people enough and have too much time alone.
6. what you need is a job that you have to go to so there is no excuse for staying home feeling miserable.
7. if people would not sympathize with you i bet your symptoms would dissappear.

why do people with diabetes, cancer, ms, lupus, heart disease, brain tumors or leprosy not have to fight for the recognition of a pathogen involved in their illness...because they usually look sick.
what kind of illness makes one so sick that they can barely function physically as well as cognitively, but they look like they are fine....this crazy invisible disease called MYALGIC ENCEPHALOMYELITIS, CFIDS, CFS and other obscure names. hell, we can't even agree on a universal name, much less what it is as it takes our lives from normal to so far below normal that many sufferers choose to take the only way out they know...suicide.
the only answers i have so far come up with to the questions i listed above are two:
Telling a me/cfids person to just get some exercize to feel better is like telling someone to climb mount everest looking for oxygen.
the other answer is to the question regarding "expecting to feel bad", so i would just say, when you fall down a flight of 50 stairs and end up with a huge bruise on your butt, is it because you expected that huge bruise on your butt?
please people, until you know someone who suffers with this illness, or you develop it yourself, YOU JUST DO NOT KNOW HOW IT STEALS LIFE. I for one want my life back worse than anything...i want to play with my granddaughter...i want to go for walks in the woods...i want to be able to get together with friends and do things like go to dinner, movies or even be able to be around more than 2 or 3 people at a time without sensory overload. let's try to be proactive in our education about this.

me/cfs/cfids-what will help?

I never thought at the age of 50 I would be virtually an incapacitated sufferer of the dread disease of chronic fatigue syndrome, giving up exercize, horses, working outside of my home or even gardening, but it's true. I agree with others in the opionion that calling this illness chronic fatigue is like calling paralysis lethargy. I have contacted a specialist, Dr. Lapp, in Charlotte, N.C. and can't get in until the end of June this year, so I contacted the illustrious Dr. Cheney, a cfids expert and researcher who practices in my hometown of Asheville, only to be told he does not take any insurance and he is over $500.00 per hour and sees you the first time for two days. We are talking between 7 and 10 thousand dollars out of pocket, which is impossible to comprehend for me right now. So, I will keep my appointment with Dr. Lapp and suffer for three more months with frustration and no information other than what I can find online. I have had a major flare for the past three months with a few good days interspersed within, but I usually do too much on good days to try to catch up on things I've been unable to do and fall flat the next day. My story is on the website called Pheonix-cfs.com if you want some background as to how I manifested this condition. This blog is going to serve as my diary, day to day, so that I can document my progress and keep a record of what works and what doesn't. ME is an acronym for Myalgic Encephalomyelitis, which is a better name for the syndrome that affects me neurologically, endocrinlogically and immunicologically. I welcome any responses from others who may have some insight into their own experiences. Til next time...betsy