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.
Petition to Sen McCain not to cut funding for Gastroparesis and other Motility Disorders.
(ME/CFSers this awful disorder is associated with Autonomic Dystunction; Autonomic Dysfunction that is big part of ME/CFS for many of us. It is the probable cause for my having this disorder.)
Gastroparesis (stomach paralysis) is a Motility Disorder of the stomach. It can cause starvation, dehydration, malnutrition and death. When the autonomic nerve to the stomach is damaged, the muscles that the nerve controls aren’t able to move food through the stomach to the small intestine as needed in order to digest food. Consequently eating and drinking normally become difficult and in some cases eating and drinking at all, become impossible. Daily symptoms include vomiting, nausea and severe pain.
GP effects many young people as it is most often a side effect of type 1 Diabetes. It also can be a side effect of Autonomic Dysfunction. In many cases it is Idiopathic (cause unknown).
On March 8th (Monday) Sen McCain is proposing before Congress that funding for Motilitly Disorders including Gastroparesis should be cut by hundreds of thousands of dollars. Please take a moment to sign the petition at the link at the top of this page, and inform Sen McCain of the seriousness of these conditions and the detriment it will be to patients and their loved ones, if his proposal should pass. Thank you for taking the time.
* Two years ago my Gastroparesis was so severe I could not eat, sometimes for weeks at a time. Often I struggled to take in liquids. My GE and I were considering having a feeding tube inserted into my small intestine as the next line of treatment. If I ate I experienced severe pain and sometimes vomitting. I learned that starvation not only causes hunger, but severe pain and weakness as well.
Fortunately gall bladder surgery had a big effect on my GP (this is not a normal result of gall bladder surgery for most with GP). Now, my Gastroparesis is mild and at times worsens. Since having GP, I don’t take feeling full, chewing a bite of food or being able to quench my thirst for granted.
“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.
Yes, they really do follow you home. We got back home from our trip in the wee hours of this morning. After the fun part of the weekend spent with our daughters, my husband I continued on to a medical appointment and testing. This required a stay in a second hotel. I will write about the medical part of the trip when results and reports come in, but right now, want to mention what a person with MCS has to do when they return from a trip that includes staying in hotel rooms (even the hotels that use as few harmful chemicals as possible).
I am washing my clothes in the washer right now with safe detergent and vinegar…the first of what will be two or three times. All my sweaters, scarve and jackets are hanging outside airing out. Oops, its starting to rain…I’ll be right back. Okay, I’m back after piling up and bringing in as many of my sweaters into the house… then collapsing. My husband is now hanging them in the garage to air out further. Earlier I washed the linens, sheets, pillow cases, blankets (we bring our my own). I washed them twice and some are still holding on to the chemicals.
Last night we drove seven hours to return home. Earlier yesterday I had a two hour doctor appointment and a specialized MRI. As all of you with CFS, and similar illnesses know, this means WIPE OUT. So, here I am on wipe out… doing my best to chase away the harmful chemicals that followed us home…crazy! 
It is now evening in this hotel room. My family is out to dinner. I was able to join them at the student union section of campus this afternoon to listen to some awesome music, but quickly had to return to the hotel due to the effects of an overload of perfumes, colognes, hair spray, dryer sheets, cigarette smoke and a merchant stand full of pretty to look at, but full of perfume, candles. All of the above filled the crowd surrounding the musicians. My hubby and I kept rollin my walker around to find a “chemical free” or “chemically lite” spot, with no luck.
My left side stops when I am exposed to more chemicals than my body can tolerate–literally I can no longer pick up my left foot or coordinate my left side. The left side of my mouth droops. It is not a pretty state to be in, especially in public. So again I am here in this destination location…this hotel room, with less toxic chemicals than most, but still with more than this chemically sensitive bod that is already topped off with toxins…can handle.
Though I make peace with the reality of the difficulties in traveling with CFS, particularly the severe MCS that accompanies the disease for many of us (see previous post, written this morning), sometimes like tonight, the peace is more evasive. Perhaps peace struggles with the neuro-toxins in the chemicals too.
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. 
Writing with a brain that thoughts are plodding through like rain boots in mud is not easy. I woke this morning thinking my brain was not up for stringing words together. When rain storms roll in and roll in and don’t stop rolling in, (like they have been here in the NW), my body and brain can not handle the pressure changes and my function level drops to low lows. I’m a bit like our lawn right now-soggy. I’m soggy in brain and body.
I thought I could handle a quick check in on my blog for new comments and found that Dominique at 4 Walls With a View, had indeed left a comment and a perfect one for this particularly slow morn. She nominated my blog for an award. Thank you Dominique! In so doing, she also has given me something I think this brain can handle writing about today…receiving the award requires writing ten things about yourself that you think their readers might not know. So, I will go plodding through my mind in search of ten things about me…
-According to the NY Times approximately 12% of the population actually like fruit cake. I am in that 12 %.
-I was a lifeguard in my late teens/early twenties. Though I never saved a life and spent most of my time collecting ultra-violet rays and hoping I was looking cute in my red suit, I was so proud of myself for earning that lifeguard certificate. I had to “save” a two hundred pound dude who was laying at the bottom of the 11 foot swimming pool. This included lifting him out of the pool, with not a scratch on him. Way back then I was a little thing, 115 pounds, and I felt like one strong, little woman.
-I started out a nursing major in college. I switched majors the day before I was scheduled to do my first catheter on a guy. (My what a wimp was I!)
-Way back when, I sang so much that I drove everyone around me nuts…that is until I was on a stage…ie. at our county fair when I stood beside my guitar teacher ready to sing back up to his lead (Gordon Lightfoot-”I can see her lying there in her satin dress…”) or when I played the part of Angelique in “The Imaginary Invalid” which included a small singing solo… NO SOUND BEYOND A WHISPER could I produce. Consequently I wasn’t given many solo ops after that. (Due to a Neuromuscular condition-Probable Myasthenia Gravis, I can no longer sing. My lesson, don’t let your nerves stop ya from doing what you love!)
-I like liverwurst a lot. If it wasn’t full of nitrates and fat, I would eat a liverwurst sandwich everyday.
-I am dotted with “purple things”. They are genetic benign little tumors (”glomus tumors” officially, they grow off blood vessels and wrap around nerves). Thankfully you can’t see them unless at close range and most are in areas like the inside of my arm where they are hard to see. They are so rare, that once when I went to a foot surgeon to have one removed from my toe, the doc. called everyone in his office to see it.
-I used to be known as “The Mosaic Lady” at local thrift stores, because I would go in weekly and buy used ceramic plates to bust up and turn into art. My weak muscles have stopped me from mosaicing, but I still love that title.
-I have to write lists to remind myself about anything I need to do. CFS makes the short memory much shorter. But, I have a freakish long term memory in which I can remember every phone number and minute details about people and events from when I was a kid. Just yesterday my husband was trying to remember the name of the wife of a friend of his family that he hasn’t see in over twenty years and that I’ve never met, but must of heard of years ago, because her name came right out of my mouth. Recently I reminded my mom what my dad’s exact salary was in the early ’70’s–I had overheard them talking about it–I would have been about ten at the time. Hmmm….I guess I’m freakishly nosey too.
-During a college summer break I worked as a camp counselor, sleeping under the stars on a quarter inch pad each night. Some nights I awoke to racoons standing beside me, just staring at me.
-I who won’t watch a horror movie, love to read Stephen King’s books.
-I watch the Bachelor…even though I think it is staged, shallow and cheesy.
That was so darn much fun…you know why? Because it was all about me…how humbling to be human…and though I try to be above such things as “all about me”, I’m so not.
This is a new blogger award…I probably should be disqualified because I’ve been around awhile, but since I seem to be in an “all about me” space, I accept it with gratitude. My nominations are two new blogs…started, or at least discovered and added to my blog list this past year. (Dominiques’s blog 4 Walls and a View is an awesome new blog!) Kudos to all my favorite bloggers who I didn’t nominate. I hope you know you make this journey with ME/CFS easier and a heck of a lot more fun…and I know you understand the limits this illness puts on a CFS brain. This soggy brain of mine has fuel remaining just for nominating two new blogs today…
Tired of me
Readers, feel free to share 10 things about you in the comment section. It’s fun…let yourself be all about you!
Sweet Darkness
by, David Whyte
When your eyes are tired,
the world is tired also.
When your vision is gone,
no part of the world can find you.
Time to go into the dark
where the night has eyes
to recognize its own.
There you can be sure
you are not beyond love.
The dark will be your womb
tonight.
The night will give you a horizon
further than you can see.
You must learn one thing.
The world was made to be free in.
Give up all the other worlds
except the one to which you belong.
Sometimes it takes darkness and the sweet
confinement of your aloneness
to learn
anything or anyone
that does not bring you alive
is too small for you.
My hubby is my hero because through twenty five years of illness he has never given up on me. He was a healthy young guy when I got sick who could have done what many spouses do and flew…Instead, each and everyday he makes this journey of living with CFS “our” journey…
He rubs my painful leg every night. He has stayed awake with me through countless nights of IC and Gastroparesis attacks. When my limbs stop working he gets me to a safe place and brings me everything I need to be comfortable there. He keeps his phone at hand and makes sure I can easily reach mine to call him when I need him. His arm is always ready to help me balance. He drives me everywhere…today to get my haircut, tomorrow it will be to buy his birthday cake. He grocery shops, birthday shops. He travels this medical journey with me…accompanying me to doctors appts., tests, labs. He takes my walker in and out of the car (thousands of times) without complaint.
While I was homebound sick, and our kids were young, he coached soccer and softball and joined in karate lessons. He spent evenings helping with homework and reading to the kids. Weekends and holidays, he played chess and boardgames, camped and fished with them. He didn’t miss a school conference and got them to music lessons, birthday parties etc…In the midst of it all, his calm temperament prevailed.
He is our one and only breadwinner….and works awfully hard winning it.
Through his eyes I see “Kerry”, not a woman with an illness, not a woman a whole lot chunkier than he fell in love with who has soggy muscles heading for the floor (because when you have severe CFS with its exercise intolerance, a work out on a good day can look like this–one slow lap around the perimeter of the backyard or a couple climbs up and down the stairs.)
He loves me enough to be a good liar who tells me I look beautiful when my eyelids are swollen and droopy, my face is swollen and I am still in my pjs with my hair barely brushed and no make-up on…and its late afternoon…
He keeps our love for being in the mountains together alive…by hauling not only our travel trailer up the mountains, but all the gear for my physical needs. When we camp in a place with smoother surfaced trails he takes me “hiking” in my wheelchair…and once again I feel like “Kerry” minus illness. He takes our canoe down from the truck and back up on to the truck by himself and rows us solo around lakes and streams.
And somehow he does all this (and much more) without complaint, without help, and without self-pity…
Happy birthday hubby, my unsung hero! Here’s to my body holding up today so that you can get out for that bday steak dinner you’ve been craving…
Here’s to all of our unsung caregiving heros. If you’d like, please share a little something about your unsung hero, as well as ideas on ways to help and encourage them.
If you know someone doing this 24/7 job which offers no lunch breaks or sick days, and would like to be of help and support, here’s some ideas:
-a meal brought over–to freeze for a night when cooking is impossible (which is often.)
-respite care-spending an hour or two with his/her sick loved one so the caregiver can take a little time for themselves, even a walk or a bike ride is a rejuvenating break.
-lending a hand at yardwork or a home project
-if you are able and comfortable, caring for the sick loved one over night would be an amazing gift and a true break for the caregiver.
-taking the chronically ill partner who isn’t able to drive, out for a short while…getting out is great for his/her spirit–and the caregiver not being the only who can do this is great for the caregiver’s spirits.
-if all of the above is out of your limits (life gets full and overwhelming for all)…an encouraging phone call or a card can mean much.
This past week and a half has been filled with vulnerability…the beauty and tenderness of it and the heartbreak of it. Our beautiful and oh so little Granddaughter was born. A dear friend of my husbands, lost his son to a tragic death.
My illness has flared my symptoms as well as my physical dependency, just as my husband added school (which can feel pretty vulnerable after decades away from a classroom) to his already busy work schedule. We need me to be as functioning and independent as possible right now.
We have been talking about the state of vulnerability we find ourselves in… a sense of awe and instinct to protect, an easy watering of our eyes and lumps in our throats, memories of past vulnerabilities surfacing, and grumpiness, that tendency to take our unsettling feelings out at one another.
Birth, death, change, illness…all bring forth the ultimate, raw vulnerability of this human state we all share…
I wrote this poem a few years back. I must have been feeling a bit like I am now. Reading it reminds me to be extra gentle with and tolerant of others, as well as myself, in times of heightened vulnerability.
Vulnerability
by, Kerry Ryan-Kuhn
Isn’t vulnerability that soft place in our souls,
that we build ourselves around as if its made of gold?
So precious is our center that we carefully choose
who we take it out and reveal it to.
Like a china tea cup or a vase of hand blown glass,
we handle it with care and tenderness.
If we risk placing it in another’s hand
we hope they hold it gently and understand,
That we share our vulnerability in a contract of trust
and hope it will carefully be returned to us.