I still am
despite this
with this
fighting this
under this
molded
burned
touched
taught
humbled by this
uninvited illness
engraved upon my life
not yet named
not yet understood
I still am
here
loving
laughing
feeling
thinking
creating
dreaming
enduring
I still am
a soul born into an
awesome, mysterious
wonderful and sometimes
cruel and unjust world
Despite this
with this
under this
fighting this
humbled by this
I still am
and I will not
give up
by, Kerry Ryan-Kuhn (published in CFIDS Chronicle-Winter 2003)
The purple sage, visible from my window, wait for me to prune their plumes, two minutes in the morning I cut as many as I can until my arms and legs fall limp. In the evening when it is cool enough for me to walk outside, when I have a wave of energy and mobility, I prune them another two minutes. In between, they stand like children given a bad haircut, by a parent who can’t cut hair, but wants to save money. They wait for me, part tall tired plumes, part short green grey leaves beginning to sprout anew.
A Chinese Chicken Pasta Salad cools on the kitchen counter. If it had feelings it might be relieved that its waiting is over…that it has become a salad. Four hours it took me, to cut red peppers, and broccoli into tiny spears, to saute chicken, to mix soy sauce, sesame oil, rice vinegar, sugar and ginger into dressing and to boil linguine. I cut, I cooked a few minutes at a time, too many minutes at a time, until my body stopped, until I dragged it to bed or the sofa for a rest…and waited for a bit of energy to surface again. The salad, sweet and sour, is two nights of dinner, tomorrow I shall not need to use my trickle of energy, of movement to create a meal.
It is me that struggles with patience most, that struggles to wait for myself, that judges, that twists and turns inside my immobile body wondering “why?” and “how?” an always active me could end up with no energy, that an always thinking me could end up waiting for my brain to process… waiting for my brain to find words…waiting for my brain to regain energy.
Death waits. I do not want to be laying here, wasting precious time as if I don’t see him. I long to be LIVING, yes in all caps, doing what I long to do, if illness hadn’t moved in. I long to dance, sing, strum, run, plant, rake leaves and jump in the piles, run in run-a-thons, attending classes, sitting in circles of people exchanging thougths. I long to give cook, throw parties for my family, for my best of friends, for new friends, and to work to make the means to do it all…making every moment before my end– lived in.
Instead living chronically ill, is a process of letting go. I have lived with chronic illness and chronic pain for over twenty years. I was young and now I am middle aged. I am able do as much and at the pace of what i imagined I’d do at the age of 100…perhaps I could do more at 100 than I can now. What do I do with this little tiny bit of life that runs through my veins…with the loss of ever being young as an adult, with reaching a stage of life, just before death, long before death?
Some days I am patient and in that patience I am at peace. But, more days, I work at having patience and peace. It is not what human beings are wired for, this being young, and laying in bed every day. It messes with the mind to not be able to do what you know is good for you, exercise (exertion exacerbates this illness) and healthy food (most which my stomach cannot tolerate). I know without these, death steps closer. I grow angry not to have the tools to keep him where he would have been, if my body still worked. I grow angry, but can’t run off the anger, paint out the anger, prune the sages beautifully with my anger.
I want to write inspiring today…but I am not inspiring. I am sad, exhausted and body stilled. I am working at patience, at accepting that I have to have it, to know the moments that like just blown bubbles, float over ahead, make us look, and than fly elsewhere and pop. I don’t want to miss the bubbles, so I contemplate, a tear falls now and then. I will feel a fleeting sense of patience, think I’m getting there and then feel it no more.
I don’t want death to shake his head when it is my turn…and say “you could have learned from the loyal willow who you saw everyday outside your window, learned the act of being still and alive. You could have listened to the soft sounds, the whispers, the wind, and grown to know and embrace the good of the still life, the patient life, the peaceful life.” I want death to say that to me without the “could have”. I want him to smile and say “you did good at making the the best of was was.”
Today, I am a flawed, energy deficient, needing to learn and grow woman, in a bed, in a house that holds an imperfect, but loving family, in a town becoming a small city, in a little populated but mountain abundant state, in a country that makes mistakes but keeps on believing it can fix them, on an earth where some people live with more than they need, and more people live with less, in a universe that holds mysteries beyond our expanding minds. I am a little bitty someone in it all, hoping to be at peace with and patient with my damaged body and in so being, live fully in, this little place in the universe that for a short while, holds me.
Tonight, I whose symptoms flare me horizontal during almost every storm that blows through my life (literally) stood vertical in the midst of a big one tonight. I had enough energy and blood pressure to hurry (yes hurry!) out to the backyard with my hubby to madly get the cover on the pool (to protect the water we swim in from icky, yucky debris). The cover was blowing out of our hands and over our heads while we battled to secure it…
Could I possibly have known the AWESOMENESS of covering a pool with an “out of control” cover while giggling and laughing with a special somebody if I didn’t have this darn illness? I know I would never have realized that being able to stand vertical outside in a storm, is an amazing experience. I wish I didn’t have this disease…but damn I’ve enjoyed this piece of tonight because I do.
Two u-turns in two days…oh,the unpredictability of debilitating chronic conditions and the disappointment they cause, not only for me but for those I love and care about. The past two days I have tried to get out of the house with my daughter for lattes and shopping and had to cut both exertions short due to Gastroparesis sudden attacks. These attacks consume me and cannot be walked through, talked through…but quite easily moaned and groaned through. The only option my daughter has is to makes a u-turn and drive her sweat dripping, stomach holding, moaning and groaning mom straight home.
I remember when the kids were little and I’d start a day feeling pretty well–well enough to take them to a toy store. Filled with excitement, they’d get dressed and ready. Too often when they’d come running down the stairs ready to take to the garage and jump in the car, they’d find me horizontal, and apologizing for suddenly being unable to stand up, let alone make it to a toy store.
Ouch, my heart would hurt as I watched disappointment spread across their adorable faces. They learned to accept too much disappointment too early. (There is a silver-lining though–we all love when we can carry out our plans and never take for granted a “normalish” outing together.)
My daughter is eighteen now and old enough to drive anywhere she wants–thank goodness! It doesn’t stop the disappointment of the blowing up of our plans, but it cuts it a bit. Her and a friend are now out shopping, hopefully treating themselves to the iced coffee drinks we her and I planned to indulge in (mine without the coffee).
Today’s GP attack has calmed down and (knock on wood) has not turned into the monster it did yesterday. I am thankful for that…but hungry. To avoid the monster symptoms of Gastroparesis, you can’t eat. I just realized, I have the TV set to the Food Network. What an interesting thing the subconscious is. Am I eating with my eyes?… hmmm…
U-turn stories welcome–I know most of us with chronic unpredictable conditions have a slew of them.
A theme has emerged in my writing this week, metaphors of life (and life with ME/CFS) found in astronomy. Imagine the photos below this post were taken on the moon.
My husband and I drive far to my CFS Specialist and had an appointment scheduled recently. With all that has been going on around here and the stress we’ve been feeling, we had been grumping away at one another and needed to do something to change that. We decided to pull our trailer with us to my doctor appointment and camp on the way home.
Then, we decided not too. My youngest daughter, not used to living with parents snipping at each other, concerned about our relationship, encouraged us to go in spite of our list of reasons to drive straight home…ie. too much to do, everyone needs us, two of the trailer wheels need to be replaced and the inside hadn’t been readied for a new season of camping. And, how in the heck do we pack with me unable to and him so busy?
We decided to do it anyway by way of shortcuts. J (writing “my husband” over and over is getting tedious) threw things unpacked into the trailer to organize once we got to our destination. We let go of having the trailer in “ready for a new season” condition and took care of the tires by dropping the trailer off at a shop on route to the doctors and picking it up afterwards. We then set out to Crater’s of the Moon National Park, a place we’d never been before.
For two days we found ourselves and us beneath the stress. There is something incredibly peaceful, calming and spiritual about Crater’s of the Moon. It is a place of desolation, miles of thousands of years old solid lava in a myriad of forms, and formations, from plateaus of smooth swirls to craggy mini-volcanos.
I found there, a metaphor of living with a debilitating illness. Chronic illness melts away much of what we’ve grown and built and changes the terraine of our lives. In so doing, the basics remain… the simplest of things. If we let ourselves be present in what is left, we can come to find beauty, beauty that we most likely would have missed, in our pre-illness, filled with “doing” lives.
In some of these pictures, you’ll see what we call our “ENABLERS”. They are tools which allow my husband and I to do what we love most in spite of the physical struggles of ME/CFS. We are fortunate to have had the means to have slowly collected what we need to get us out in nature–our trailer (a dozen years ago), my wheelchair and walker in more recent years, and last summer during the US of A’s “Cash for Clunkers”– we turned in our ancient, barely moving van for our “Mid-life Crisis”, oh so fun, blue metallic truck. J is my greatest “camping enabler”, as he does all the work to get us up the mountains and back and all the work in between.
We camp differently from “norms”, (love that term Jo), but I believe we enjoy it as much if not more, because it is something difficult and often impossible to do with disabling illness…like the occasional unexpected green tree growing out of the desolate terraine of Crater’s of the Moon.
A typical day camping begins with my husband cooking breakfast and me helping as much as able. We linger over coffee and french toast (and my morning meds). We get ourselves dressed and presentable enough to emerge from our little home on wheels and take a “wheelchair walk” -husband pushes me, I get out now and then and walk, using the wheelchair for support until my legs start shuffle, then, I sit down again. My husband returns to his wheelchair pushing work out. As you can tell from the pictures below, pushing the wheelchair burns off a heck of a lot more calories than sitting in it.
Crater’s of the Moon has paved paths around mini-volcanos, caves and lava formations. This made wheelchair walking easy. I do though fantasize about an “all terraine wheelchair” that would allow us to wheelchair hike- off road. How cool would that be?
The rest of the day, I lounge solo in the trailer, take in the beautiful views out the windows, crochet, read and sleep. My husband mountain bikes. Dinner is much enjoyed, as we sit together talking, me propped up on pillows to help our evening last as long as possible. When my brain isn’t too tired we play Rummy until it is– rotating being Gin and Rummy 500. He’s better at Gin and me at 500.
During my doctor’s appointment my quality of life was talked about. In a medical sense, due to my lack of function, neurological struggles and pain, it is considered low (desolate perhaps). I hate that. Low is not what I believe my quality of life to be (high in physical challenges/pain yes, but low in quality, NO).
My life in spite of being home bound and all that ME/CFS has melted away, is filled with my family, love, friends and the dear ones I’ve found in my laptop, soy lattes and chocolate when GP is in check, good reads, beautiful yarn, stacks of warm blankets, amazing views out windows, movies on weekend nights, short shopping escapades with my daughters, political debates with my son, snuggles with my granddaughter, and ways to do what I love the most with my hubby–take to the mountains and stay awhile.
*The photos below include the view out our back trailer window (the one with the green tree), caregiver respite (my hubby taking a much needed rest on the picnic bench), me taking a break on my walker during a short walk, J camouflaged in red. The rest are of landscapes, and one is of us on a wheelchair walk (J put the camera up on a rock, set the timer and ran so we could both be in it). The photos are small; you can enlarge them with a click.
Last night as I was falling asleep, my husband had the TV tuned into the History Channel. I listened to the narrator tell of how an astroid or comet, can enter a solar system and strike one planet. If this adds enough extra mass to that planet, it can change the orbits of the planets around it.
Is that life or what? Start at the universal level and bring it right down to earth, to its ecosystem and then to us human beings (who are pretty good at throwing in metaphorical comets of weighted change– current example, the oil spilling out into the ocean and gulf stream).
The influence of a change on one, affecting those in near proximity, goes right to human relationships and through to the individual.
Okay, so in my little family solar system since the addition of three members into the household, I have decided that we have been impacted by weighted change and that it has reset orbits. Some have fallen smoothly into their new rotations and others, like myself, who is slow to transition, is still in free fall, hoping a new orbit is waiting nearby for me to land in.
Out of reach, but in sight are my routine, my laptop, my cell phone, my feeling of comfort and security, even chunks of my identity,…they’re there I can see them…now I’m waiting, falling, waiting, hoping when I land they will all be near, and I can pick them up again…most likely in a new configuration, but in an orbit, I can count on.
Yes “count on”, the “false sense of security” we need, that things will stay close to the same each day. Even though asteroids and comets fall through solar systems, even though nature is unpredictable and our bodies fragile…even though those of us whose fragile bodies have gone too haywire to be “counted on”, we need that sense of security that helps us feel at ease. We need whatever routine and control we can put together…
At least I do. I’m a routine freak. Even though the state of my body has the greatest impact on my routine, whatever I can control and set in orbit, feels like a salve that spreads across my days. This morning my laptop spun close enough to grab and to write a post. Still, falling around me near, but out of my reach are the the new sounds of my granddaughter crying, my son asking for bleach to clean with, my explaining again, my MCS and how it relates to cleaning bathrooms (I can only tolerate vinegar and baking soda), dinners with five adults with different schedules and tastes and few cooks (I love to cook, but am most often unable to), a washing machine almost constantly full, baby products and finding one’s that are safe for baby and me, finances in flux, they’re all floating out of reach…as is the sense of false security I am longing for.
….and lemons…lemons…its hard to make lemonade outside an orbit. So for now, I’m watching yellow lemons float by. Imagine if they each had consciousness they’d be feeling a sense of false security…not knowing that someone is near who would like to make lemonade when she can.
How’s it going in your solar system?
Hi, I’m the little one in the picture who is laying in the big “donut”. My Grandma, is the big one in the picture who’s laying in the little “donut”. My Grandma has ME/CFS. She’s like me; she lays around a lot. She doesn’t have a crib, and doesn’t like to lay on blankets on the floor, so she lays on her bed or on the sofa.
When Grandma’s on the sofa, she holds me with lots of pillows supporting her arms, so we can play. We have long conversations. I like to talk, and Grandma does too. My eyes, she tells me, are the prettiest blue she has ever seen. I don’t know my colors yet, all I know is that her eyes smile at me and I like to smile back. She gives me lots of kisses (too many, but don’t tell her I said so).
I wish my Grandma could hold me longer, but her arms get weak fast and she has to hand me over to someone else. I also wish my Grandma could sing to me. If Grandma sings, her muscles that help her breathe get very weak, which means it gets really hard for her to breathe. Because Grandma likes to talk a lot and shhhh-don’t tell anyone, she sang to me really softly, she had a “breathing attack”. Everyone in the the house got scared. I guess breathings a pretty important thing to be able to do.
My aunt sings to me. She knows lots of songs that Grandma used to sing to her. When Grandma was a teacher, she sang and played the guitar with the kids in her class almost everyday…this means she knows lots and lots and lots of kids songs, the one’s she tells me she wishes she could teach me. I want her to play the guitar and sing the “jump, jump, song”. My dad and aunts say it was their favorite, because when she played it, they got to jump on her bed. I want to do that when I can jump.
Please help my Grandma sing and play guitar again. She tells me its ME/CFS Awareness month and since I think I can talk, that I can spread the word that all the people in the world who have ME/CFS, the kids, the teenagers, the grown-ups, the parents, the grandparents, need your help so they can get better. If you visit SolveCFS, you can make a donation that will help, or you can read about what Grandma has…that helps too. Love, ”the little one in the big “donut”.”
I start ME/CFS awareness month (MCS and Lyme as well) with Patti’s beautiful words about living with these illnesses. Thank you Patti for giving me permission to post your wisdom.
“Last week I went with my husband to a doctor’s appointment. As I sat waitng for him I picked up a book about living with a hidden disability. It was as if it was written for me. I sometimes feel as though I am the only one on this rough road and then I touch base with others and realize there are so many of us who are hidden away. We are the fighters who keep on going despite losses. The losses are so vast that sometimes you wonder if you can deal with any more and then you read another’s story and realize you really can handle it and you might even start to see some of the good things that have happened. Sometimes you really have to look hard for those little blessings and sometimes they just jump right into your arms. Sometimes I think my worst enemy is time….too much time to think and worry, too much time to agonize over relationships. Sometimes that overwhelming fatigue that makes me just stop and take a nap is actually my best friend. So sometimes I need to stop and lick my wounds before I get back up, brush myself off and try to get on with the business of living. It really is about how you ride the trail.”
Parents with ME/CFS, MCS and/or Lyme, I’m writing a post/article for Awareness Month (May) about how having a parent with these often misunderstood illnesses has an impact on our children. If you or your child (young, grown-up or in between) would like to participate by sharing your thoughts and experiences, leave a comment telling me so and I will email you a questionnaire asap.
Feel free to ask questions through “comments” or email me at Kerryon25@msn.com. You can also read my previous post for more details. Thank you much to those who are already participating, 
Kerry
I don’t normally feel “gray” and find it hard to share when I do. I am feeling “gray”. The reality of ME/CFS for me is the mimicking neurologically of progressive MS. When the muscle weakness (which includes breathing muscles), struggles with coordination and immobility are high, when too much physical pain joins in from other conditions such as Interstitial Cystitits and Gastroparesis, it can get to me. I am in this physical situation right now; its getting to me.
It is difficult for my family, as they feel helpless and often have to help me move, which includes setting me up in a position that helps me breathe. I feel bad that what I go through effects them. I tend to be a finder of silver linings, and “finding the funny”. I usually find them, but right now they are hiding from me. So instead I’m in the cloud around a silver-lining.
In the essay I posted below, the metaphor of the color wheel reminds me that its okay to feel all the colors…all the emotions that go along with having a serious and sometimes scary illness (and for all of us who share the human condition, with the loss, pain and adversity that it holds). It is so easy to judge myself when I am finger painting with “gray” paint. I am in the midst of that judgment.
I am realizing that it feels incredibly vulnerable to post in “gray”…
“Act as if what you do makes a difference. It does.” ~William James
“Act as if your existence makes a difference. It does.” Kerry
Hi, I’ve haven’t been around for a few days. My husband and I took a journey so I could participate in a ME/CFS research study. It was an exhausting journey, but for me it was a dream come true.
Through these over twenty years of life with CFS, I hoped… (the kind of hope without expectation; the kind you keep tucked away for fear of disappointment)…that someday people would care enough about CFS to do scientific research. I hoped that just maybe, my own experience might be able to add a piece, or a fraction of a piece, just an itty-bitty piece, that could possibly add to the whole picture of what is causing this pretty darn brutal illness and how it can be combatted.
Participating felt as good as I hoped it would. I felt such a part of this community of people with ME/CFS all over the world…to those who are able to write, who are writing, to those who are able to speak who are speaking. I felt connected to those who can do neither, because they are too ill. I think of how we are connected by the diverse internal ways we find comfort, and peace, when all we can do is lay in bed or on the sofa. It all binds us.
Scientific research studies are being done to help those of us with ME/CFS. There was a time I never thought I’d be able to write that.
*If you feel like sharing, what are ways that help you feel connected to the ME/CFS community? What gives you a sense of making a difference? Any ideas of how our community can help people feel more connected who are too sick to be online and/or can’t afford a computer? I’d love to see snail mail come back to reach more people…cards, notes…yet, I know its impossible for many to get to the mailbox.
Oh joy…my legs are shaved! I find shaving my legs to be one of the most grueling, energy exerting activities since having ME/CFS. One of the best things about winter is not having to shave my legs because I can hide my hairy legs under my long pants, sweats or pj bottoms.
There comes a time though when my tolerance for the oh so unattractive hair on my legs reaches its limit…and so it did today. This also came about from my working on new ways of doing things in order to help my function rise. Shaving legs does not require cognitive exertion (aside from remembering which leg I’ve already shaved). I’m also working on making myself a greater priority and my legs, being a part of myself, fit the plan.
To shave my legs, I have to take a “keep my blood pressure up” medication….and I have to accept imperfection, which means making peace with missing a spot here and there. But, I did it; my legs are smooth and I even put lotion on them afterwards. I’m celebrating… laying down, exhausted… but celebrating!
Okay you guys with ME/CFS, FMS, MCS, Gastroparesis and other energy zapping illnesses…do you find shaving your legs a major feat too? Any energy saving tips?
PS! I just realized how sexist this post is. Guys, I know the shaving your legs doesn’t apply to you, but I bet shaving your face each morning can be impossible when you have no energy. Maybe you’ve grown a beard or gotten comfortable with the “scruffy” look? Love to hear from you and the plight of face shaving.
“Success is getting and achieving what you want. Happiness is wanting and being content with you get.” Bernard Metzer
How fun to write a “happy list”. Sue at Learning to Live With CFS, passed “The Happiness Award” to me and my blog. Thank you Sue, who continually inspires and teaches me. This award is one that passes happiness forward…recipients share ten things that make us happy, and then share blogs that do the same.
Here’s my happy list (its hard to keep this at 10):
- sitting around the dining room table with my whole family
- watching my son be a daddy to his new baby girl
- driving around with my hubby in our cool blue “mid-life” truck.
- lattes, shopping and talking with my youngest daughter
- when the phone rings and I see on the caller ID that its my oldest daughter
- knowing my niece and nephew are coming to visit soon
- camping in the mountains in our travel trailer
- crocheting a blanket for someone I love
- being in the water (pool,ocean, as long as its warm)
- the return of the duck couple each spring to their “pond”, our pool, where they are swimming right now.
If you don’t have a blog, please feel free to write and share a happy list.
I have found two Gastroparesis blogs recently. This brings happiness and adds to the online GP community, as there aren’t a whole lot of GP blogs out there. These two woman are not only honest and real but are funny…giggles lead to happiness, so I pass the Happiness award to Shoot Me Now and GastroDisastro.
I wish I had the energy to list and link to my favorite blogs that bring me happiness….there are many and most are on my blogroll. I do want to mention a blogger who was one of the first I connected with when I started blogging two years ago. Her name is Renee, and her blog, is called Renee’s Reflections. For two years her blog has felt like a cozy sunroom, where I can sit on her sofa and “listen”. For two years her comments and sharing on my blog, encourage and inspire me….no matter how she is feeling or what she is going through she spreads happiness throughout the CFS/LYMe community.
BEST MASK
by, Shel Silverstein
They just had a contest for scariest mask,
And I was the wild and daring one
Who won the contest for scariest mask–
And, (sob) I wasn’t even wearing one.
One of those days it is…so I picked up Shel Silverstein’s Falling Up and found this poem…it made me giggle…
Gosh, a giggle feels good…especially when we’re not.
There’s something to this poem that relates to being really sick…lets see if I can get my fuddled brain to make the connection. When you’re really sick, you don’t feel pretty and you don’t like to look in the mirror. People sometimes say “you look pale”, or “you don’t look so good”. Your hair usually looks funny. My daughter laughs when she notices the back of my head when I’m really sick, because my hair sticks up when I’ve been laying down for a long time. If you get up the courage to look in the mirror, you might notice, at least I do, half open eyes with dark circles around them and a puffy face. That’s the “scariest mask part”…
When you’re sick it is a whole lot harder to put on your social mask, let alone find it. It is hard to put on your favorite clothes, your power clothes, let alone launder them. It is hard to answer, when someone asks “how are you?… “I’m doing good”… and other socially acceptable things people are expected to say…so you might answer something honest and scary like “not so good”…and if you answer “I’m shivering with pain and really hungry because I don’t have enough energy to walk to the kitchen”, that’s really, really scary….so most of us never really say that even when its true. If we did…the person asking might think we are joking (like playing a “best mask” or best scary answer to “How are you?” game).
So, when we are feeling really sick we can’t wear masks…and sometimes when we’re really, really sick, we can look scary enough and vulnerable enough to win a “scary mask” contest when we’re not wearing one.
I love kids books because they are full of truth, like kids are…and like people who are feeling really, really sick can be.
ME/CFSers I’m about to share a part of CFS that embarrasses the hell out of me. I’m hoping some of you can relate…that I’m not standing out here alone and you guys are thinking “…what the heck is she talking about, that never happens to me”.
If I am involved in a conversation that includes concentration for a length of time, I slowly but surely get “punchy”–yes, but minus the cup, the punch and the vodka.
I like to laugh and joke, but the longer I converse the more I do so. I lose my train of thought and my words more than is the normal pain in the butt “lose your train of thoughts and words” CFS symptoms. I struggle to say words correctly. I have started to lose my “what I choose to say or not” filter and found myself talking about something I would have normally kept to myself.
If I continue on, not realizing this is starting to happen, the symptoms will get more and more pronounced. If you didn’t know me and the fact that I can’t drink more than a sip of beer without feeling dehydrated and sleepy…you’d think I had a drinking problem and stopped by a bar on the way to see ya.
My appointments with Dr. Bateman last an hour and sometimes beyond, because I have to travel aways to get there and can’t see her as often as if I was local. By the end of our intensive hour (meaning I have to concentrate, answer her questions, work hard to remember stuff so that I can answer her questions), I begin to talk more, joke more and giggle more…yes, like I’ve had a few drinks over my limit.
Feeling embarrassed about this at my last appointment I said…“Really I haven’t been drinking Dr. Bateman…this happens to me when I talk with someone for a long time”.
“Oh”, she said, “I just talked about how that happens in patients with CFS, at a conference this past weekend.”
Its CFS normal! Long time concentrative conversations can turn us into pseudo-drunks. So if you too find yourself on a long phone conversation, or talking for a lengthly visit over tea with a friend and think, “geez, I seem tipsy”…you just might.
I’m hoping to ask Dr. Bateman more about this if it fits into our next appt. I would think it goes with the cognitive exertion of our brains, which exhausts our brains. Concentrating on conversation and keeping on subject for a long time is like going for a walk that is far beyond our physical limits…we crash with exhaustion.
I also find long conversations physically exhausting. So…when I’m walking away from someone who I’ve been having a long visit with over cups of tea, who listened to me start sounding like I’d been spiking my tea, I wobble as we say good-bye, lean to the left (my left side has weakness probs) and look like I spiked my tea as well.
“Do what you can, with what you have, where you are.” Theodore Roosevelt
My ME/CFS Spring “exercise-INTOLERANCE” work-out regime has begun. I started two days ago, cane in hand, slip on tennis shoes on feet. I walked once around the perimeter of the backyard, then collapsed on the sofa. The next day I walked the perimeter twice, once in the morning and once in the afternoon, collapsing on the sofa after each lap, but feeling darn good about myself. I know there will be days I can’t make it around the backyard perimeter, but I will get out there when I can. My ultimate goal is to be able to walk around the block with my walker and my husband come summer. When we’re camping, I want to be able to do as much walking as possible during our “wheelchair walks”. (A “wheelchair walk” is when I push my wheelchair as far as I can, then I sit in it and my husband pushes me).
Yoga has been shelved during this long crash. When I am strong enough to do yoga again, my goal is to spread my purple yoga mat on the family room floor and stretch on it, at least every other day. I do yoga in the evenings, because stretching makes me sleepy. I have to do most of it laying down or sitting. If I stretch for more than a few minutes, I crash; still I love doing yoga and look forward to doing whatever I’m able.
Do you have a ME/CFS movement routine? movement goal? If so what do you do or what can you do? This will be different for everyone. In the early days of my illness I could still slowly work up to walking a mile and a little more without a cane and by myself. I was able to teach oh so slow and gentle yoga to others with ME/CFS/FMS.
Again, I stress, the amount of movement each of our bodies can tolerate will be different. No matter where we are with movement, be it pinky finger curls, ankle circles, gentle chair dancing or taking fairly long walks…its great we’re moving however we can. It’s important that our “exercise” stays within our individual physical limits, so we don’t crash and have to start all over again…
Right now, I am wearing a pair of light blue flannel pj pants, an old white hoodie and one of my hubby’s white t-shirt’s, which hangs out from under the sweatshirt. On my feet are a pair of fuzzy- wuzzy grey and white striped socks. I’m wearing one cute thing–my favorite hoop earrings. I’m not wearing a bra. Lately when I’m feeling crashed and flattened, I find that locating a bra, putting it on, hooking it in front, then twisting it around and putting my arms in the straps, demands more energy than I have… so, ha!…I’m looking flattened too!
How about you? Right this minute…what are you wearing?
When I was little I remember my parents getting a call to a “come as you are party”. This gave me the “whatcha wearing now?” idea. You were supposed to wear to the party whatever you were wearing when you answered the phone and received the invite…your robe, boxers and slippers, gardening overalls etc…
Since a good lot of us are at least some of the time homebound and bedridden. Since often getting to our showers and wardrobes can use up more energy than we have some days, I thought I’d throw this question in a post now and then, cause I think we probably have some fun and unusual answers…
(Posting photos would be all the more fun, but I’m not that brave…)
There’s nothing like nice, genuine authentic people. I’m going to share some nice, genuine, authentic people energy that recently blew my way…cause its such good for ya energy!
I do Facebook (I have no idea if that’s what you say, “I do Facebook”, oh well). Sometimes I love FB; sometimes I hate it. Last week I had an old friend from way back, send me a message that put me in the “love FB” spirit.
He wrote that he had visited my blog, which alone is a nice thing to do, because he is busy and time is precious. Then he wrote that he knows someone with CFS and shared something from a book that he’s read about CFS. Yes, this nice, genuine, authentic person read a book to learn more about what his friend is going through…now that’s a friend! He asked how long I’ve had CFS and ended the message with words of affirmation and encouragement both to me and to my husband.
I imagine people like this have no idea of the positive impact they have on others. Thank you nice, authentic, genuine, old and now new friend, for your spirit lifting, hope giving kindness. I know it not only impacts my life, but the lives of those with CFS, and other not well understood illnesses, who are reading this right now. 
PS–Since I’m writing about nice, genuine, authentic people, I have to mention YOU. Earlier this morning, when I opened up my blog and found your warm messages, I felt such gratitude to have you in my life…you feel like my “cyberfamily”.
I send you wishes that as this week ends your body does as well as it can and if that isn’t so well, that within in it, you can feel good about your brave self that keeps on hanging in there.
I get to know hotel rooms. I do not breeze in out of them to sleep and shower and get to the business of travel… instead I stay. For me the room is my destination. This morning I sit on a cozy, wide, worn chair, my feet on an ottoman. I sit and look up and out the sliding glass door to a still river below. The sun is shining…what a pleasant reprieve from the sunless days of home.
We are staying at a lovely hotel thanks to the grace of a friend who works here and helped us to afford it. The room is wide, so that at the end of the two queen size beds, there is space for me to lay out a sheet I brought from home, on which I do my oh so gentle yoga. I stretch in small batches…rest, do something else, stretch again.
There is a slight presence of chemicals in the air, perhaps Febreeze. We kept the window open a good lot of the night and though I feel some irritation to my nerves, sinuses, lungs etc, it is mild. I am grateful as compared to most hotel rooms, this one is practically “toxic chemical free”. Our friend put a personal note into house keeping to refrain from using harsh chemicals to clean our room with. I appreciate that much. Quite a few times over the years, we have had to change hotels as the potent chemicals rendered me unable to move or breathe.
My thoughts travel to my family..to what they are here to do and how it is going. I wish I was with my daughter right now, touring the campus. I wish I could join in on the “normal” of parenting our children into new life stages. I know my kids are blessed to have a daddy who can. I need to remember to be grateful that I am here with ears that work and that can listen, afterwards, to the tales of their adventures.
This room feels cozy. The bedspreads are sage green, murky green, like the color of the river…a pattern of off white leaves spreads across the fabric. They are not shiny and polyester bedspreads as most hotel rooms use, instead they are cotton and soothing to the touch. The carpet is good ole’ indoor -outdoor in a not so natural green, speckled with subtle rust colored zigzag lines. The wall paper is subtle; subtle to where you don’t know its wallpaper unless you spend hours in the room and notice. It is striped vertically with white and off white stripes. The gold framed art is of old train bridges, white train bridges.
I like that the placement of bathroom. as it is tucked around the corner from where I sit. and I can’t see it from here. My medicine bottles had an accident last night. I take Mestinon for Myasthenia Gravis. I take it in liquid form and learned that pouring out a dose in a moving truck is not smart. The sticky liquid spilled over the rest of my pill bottles. They are standing by the sink waiting for a shower…for now, I can tuck that little chore away.
I brought my laptop and my novel (Stephen Kings’s The Dome, which I am reading slowly as it is a heavy hard back book; too heavy for weak muscles. It needs to be propped up for reading. I asked for it for Christmas…I know now to wait to ask for the books I want to read to come out in paperback.)
Being alone in a hotel…waiting…knowing that those I love are taking in part in activities that grow their lives…has become a bit spiritual. The stacks of laundry and bills at home are out of mind (or were until I just wrote about them). It is just me in a room, a room with a new view.
After I visit my feelings of “left outness” and “why do I have this lousy illness that makes it so I can’t get out of here”, I surrender…I do. I find peace with it. For years this is my pattern, frustration, “why me?” and then “its okay.” The quiet begins to sound soothing and I begin to settle into my own company. I remember that I can be a rather nice person to hang out with. Time will pass, the hotel door will open and I will hear what happened out in the world of my loves and in so doing become a part of their experiences in the way that I can.
I didn’t bring my poetry books with me this trip, but there is a line from a famous poem that keeps coming to me “with a heart for any fate”. I can not come up with the name of the author. When I get home, I will credit him and the anthology the poem is a part of. For now, these words soothe me, affirm the intimate relationship I develop with my hotel room surroundings.
This fate is mine…mine to live, mine to find the beauty in and sometimes to feel the “this is too much” of. It is my fate…and in the quiet that it demands, I am able to hear the rhythm of my heart…the sweet little songs of the birds perched on the tips of the boughs of the trees flanking the river…and of course the ongoing “ommmm…” of the heater/ac unit. 
