A year ago I was living in our old house, and was bound to it by the physical challenges of illness. Today I look out the big beautiful windows of our new home and feel overwhelmed at the fact that often I can walk out into the view… independently. A year ago the reason for my illness remained a mystery. Today answers to why my body struggles, are clarifying.
My last post was five months ago. I was waiting to share until I had my follow up appointment with the Movement Disorder Specialist out of state, who prescribed me the medicine that for me is a life changer. I did not want to write my speculations or guesses. I also have not been writing much as I have been in the moving moment and putting my renewed function into “moving” into our new home.
I want to clarify my last post, as I know I left readers “hanging”. Had I been given a new treatment for ME/ CFS? No, I haven’t. The diagnosis of my illness has taken a direction away from ME/CFS.
I have a Dopamine Deficiency… a Parkinsonian Condition. I hoped after waiting these five months for my second appointment with the Movement Specialist to be able to share an exact diagnosis, but the doctor is still in process of narrowing it down. She is testing for Dopamine Responsive Genetic Conditions and Early Onset Parkinson’s Disease. I will see her again in four months and hope to learn more.
Mirapex is the medicine that I take. It is a Dopamine Agonist, which means it helps the brain make and process Dopamine. Dopamine is necessary for the brain to communicate with muscles and for normal movement and coordination to take place.
Mirapex is also helping my Autonomic Nervous System to work more efficiently. I am tolerating heat better and am able to stand up in one place for much longer periods of time.
I am able to exercise! Those of you with exercise intolerance I know understand the absolute joy of this. I walk about two miles five times a week. I am also starting to cycle on a “trainer”—makes a road or mountain bike stationary so you can work out at home.
When my medicine is working efficiently, I often feel like my old self from twenty years ago. I have energy and can be as hyper as I used to be. Then there are “off” times when the medicine isn’t working as well, because I have a UTI, or did too much the day before, or walked too hard or far that morning. Also, being new to this, it will take awhile to get the dosing just right. When my medicine is “off”, my left leg doesn’t want to come off the ground, my left arm stops swinging, its hard to smile because my face muscles are stiff…and I feel slow, tired and uncomfortable.
A good lot of my time, I am enjoying what I can do that I haven’t been able to in nearly two decades. We hosted a “thank you for helping us move” party Saturday night. I was able to have a great time and tolerate, being in the midst of fifteen wonderful guests, music and a lot of stimulation. Last week my daughter took me to the Shakespeare Festival. We picnicked in the outdoor theater. On my birthday, my parents came out for a visit. With my husband, my daughter and my parents, I went for a hike in the mountains.
A year ago, I hadn’t a notion that I had a Movement Disorder. I had grown into an acceptance that my journey was living with a mysterious illness and that my life would be lived within the walls of my home.
Though there is much to be learned about Parkinsonian conditions, and though there is no cure, there are treatments that help symptoms. I have medicine as well as physical therapy and speech therapy. I have a physical Medicine and Rehabilitation Physician, who I like very much.
I have a “Care Team”—and I am grateful. This is what I wish for all who are chronically ill, be it with an illness that is well known, rare, not yet understood, diagnosed or undiagnosed.
Take good care, and never give up seeking good care, Kerry
My last post was about the changes with my eyes and finding adaptations to allow me to get back on the computer. The journey to find help with my eyes ended up leading to roads I never expected to travel.
I am currently on a new medication that is a part of a diagnostic process. It is allowing me, during the window of a working dose, to move normally and do many things I haven’t in nearly a decade. Pulling words from my seventies vocabulary–It is awesome!
Examples:
Walking–I love walking and for the past years have only been able to do so by using a walker for a very short walk, or a “wheelchair” walk with my husband. I would walk until my left leg started to drag and my feet would shuffle, then my husband would push me. Now, I walk a mile (sometimes a little more) on my own two feet, lifting both feet off the ground and barely using a cane.
Climbing stairs–When this med is working, I can do so easily. I don’t need to hold on to the railing. I don’t get out of breath or have to step both feet, slowly, one by one, on each step. I can take each step with one foot and do so with a bounce!
Balancing- I can stand upright with my feet close together. I had gotten to a place with my balance where I was almost doing the splits, having to move my legs further and further a part to keep from toppling over.
Raising my arms overhead and holding them there for awhile.
Sitting and standing upright without stooping. I have tossed the pillows that have been holding me up these past many years, in a corner of my room. Since this medication, I don’t use my walker at all.
Moving my left side to a musical rhythm–for years now, my left side has stayed still, frustrated as my right foot tapped along with music; my left hand resting as my right hand snapped with the beat.
The lights are on in the attic–at least during the “working window” when the dose is high enough. I still have cognitive problems, but I feel brighter, like my thoughts are moving more normally as well.
This medicine is a treatment and not a cure. The “working window”, when the medicine is at a high enough level, is short. Finding a dose that gives me the most function and the longest lasting period of greatest ability, I imagine will take a long while. It is possible that this medication could stop working.
For right now, I don’t know what all this means diagnostically. But, I am thrilled to move and balance, to do things I thought I never would again. Even if the medicine stopped working tomorrow, I will be absolutely grateful.
I feel like I imagine my sixteen month old granddaughter does when she walks on the path by the river holding her grandpa’s hand. She laughs and sings joyfully out loud as if moving her own little self forward on her own tiny feet is the best thing in the world.
Yesterday I borrowed my daughter’s bike and rode down the street and back; though a short bike ride, it was my first in many years…and it was awesome!
I don’t want to share details until I learn a lot more, which will take time. But, on this bridge of getting to move like I never thought I could again, I want to share the thrill of it. 
Gold becomes constantly more beautiful
From the blows the jeweler inflicts on it- Rumi
My eyes are closed as I type, as I begin this 2011 journey of learning how to be online with the changes that 2010 brought to the function of my eyes. I send out a big thank you to so many friends who have shared ideas and tips of how I can do this. Laurel your “how-to’s” I am using as an instruction manual—thank you so much!
Monday morning I “read” a blog post for this first time, using “reader software” (I select an excerpt of writing and a computer voice reads it to me.) I feel hope and happiness to have been able to read my friend’s wise words as she reflected just before the year changed over, on the losses that 2010 asked of her and the outcomes (and triumphs) of how she courageously handled them. I read two sentences and felt flooded with a familiar feeling—I am not alone on this journey with ME/CFS—and oh, how much I learn from you who share it. (This particular post was written by Dominique, at 4 Walls and a View).
With my eyes closed, I see the word PATIENCE in capital letters, as large as the “H-O-L-L-Y-W-O-O-D” sign that marks the hills of Southern California. 2011 has already begun to beckon me to living with great patience.
I am not a naturally patient person (to say the least). I take these new steps towards growing patience reluctantly, but gratefully. In patience lies the possibility of learning a new way to keep participating in an important purpose in my life…doing what I can to bring understanding to this devastating, yet misunderstood illness, working to grow research to find the causes, treatments and cures, and to do this in community and friendship with others who have ME/CFS and related illnesses (and those who care for them.)
Another purpose in learning how to use the computer in a new way is for my own personal enjoyment and well-being. Writing is my play and my teacher. It helps me find my center and gives me perspective. I also love to read, to learn, to dig into mind food and contemplate, to laugh and cry and feel the connection of our humanity, through the sharing of words.
I will need the next 360 days to learn this new way of being online and for it to feel familiar. With my nature, I would have expected to have this down in a week. Just allowing myself 51 extra weeks to grow competent at this, already feels like I have new part of me beginning to bud in 2011.
One of my favorite aspects of blogging is the ability to interact with you. Is there a new loss that ME/CFS asked of you in 2010 that you are comfortable sharing and perhaps something it has taught you or is asking of you?
(*I apologize for not linking to the blogs I mentioned above. I have not yet learned to do this in my “less eye taxing” way. Both Laurel’s blog “Dreamsatstake” and Dominique’s blog “4 Walls and a View” are listed and linked on my blog roll.)
Happy holidays friends and readers. With the help of my daughter this poem is posted. She wrote it last year. Not one comfortable in the lime-light (or her work being so), she has reluctantly given her permission for me to share it here.
It is not often that we hear our children’s voices as to their experience living with a chronically and progressively ill parent. I am grateful for the gift of this poem and the whisper of my daughter’s graceful voice.
Her fingers, long and slender
Shake more today
Guiding the hook through yarn
Knot after knot,
She looks fragile
Like the baby’s first Christmas ornament I hang
She watches, crochets
Tells me I’m my “mother’s daughter”
Making sure every branch is precise
That no two colors side by side are too alike
I wish I was a child again
Could stand as tall as her knees
And grab on
My world lying in her hands
Stringing a strand of lights
Stroking my hair
While we look up and sing
“Oh Holy Night
The Stars are Brightly Shining”
Now I sing, quietly, but I sing
She tells me to sing it for both of us
I don’t think my voice is strong
Enough
But I try
I try
(by, Madilyn Kuhn)
Happy holidays and Happy New Year. I hope you each feel as well as possible and are able to enjoy many lovely moments. Warm wishes, Kerry
Being here, on a bridge, somewhere between loss of function and having adjusted to it, I find the poem below comforting. It is about feeling lost, but reminds the reader that wherever she is lost, is a place, a “here”. My “here” is atop my bed watching daytime TV, lost as to if and when a day will come that I can put something in this brain other than what comes out of the TV, lost as to how to connect with living breathing beings, lost as to what all this progressing muscle weakness going on in this bod means. Yet, for me through this journey with a physically struggling body,”found” has always been when I have a peaceful knowing that I am doing the best I can with what is. Whatever that is (even laying down breathing), it is a place. Right now, TV and a bit of organizing is the best that I can do.
Lately, I’ve been bringing a small project beside me on the bed. This week it is the art supplies that have accumulated through many years of my own drawing and painting when my arms were able, and arts and crafts enjoyed with my children when they were younger. I have honed my “keep” pile into one bin. Each day I organize something. Yesterday it was a basket of costume jewelry that I used to rummage through for pieces to add to my mosaics. Today, I hope to tackle the pencils, the paints, the pastels.
I smile a bit at thinking that my “here” will change for a bit this evening (fingers crossed) when my hubby will drive us out for our weekend fun food, “take out and home” dinner and a box of our dark chocolate covered biscuits (which we try to make last through the weekend–yum.) We will bring it back “here”, where I will have a movie watching companion, a “here” companion. (How fortunate I am to have him.)
Thank you for your warm supportive comments and the resources shared of how to keep online and keep reading in spite of eyes that aren’t able to. I’m happy to share that my insurance company will cover testing with a Neuro-Opthamologist. I hope to share what I learn, as soon as I learn it. Then I look forward to “adjusting”, to whatever I need to adjust to…And, to try out that software Laurel and Leslie!.. to think of my computer reading and writing for me…I’d do a dance if I could.
For you poetry readers…this poem is entitled “Lost”, and is written by David Wagoner. May it affirm and comfort you wherever you are…and whether or not you know where that is (wink). My hubby will read comments to me, if anyone feels moved to share their “here”.
Stand still. The trees ahead and bushes beside you
Are not lost. Wherever you are is called Here,
And you must treat it as a powerful stranger,
Must ask permission to know it and be known.
The forest breathes. Listen. It answers,
I have made this place around you.
If you leave it, you may come back again, saying Here.
No two trees are the same to Raven.
No two branches are the same to Wren.
If what a tree or a bush does is lost on you,
You are surely lost. Stand still. The forest knows
Where you are. You must let it find you.
I will never take my eyes for granted again! Without mine working right, I’m pretty much knocked out of Cyberspace until either they get fixed or I get special equipment that helps me hang out online with them as they are. A couple months ago I shut the lid of my computer and stopped posting. (I also stopped reading). My eyes muscles have went the way of most of my other muscles–weak. The weakness became severe. I could no longer read without my eye muscles becoming unable to focus, and making strange movements after trying to do so. This over extending the limits of my eye muscles caused pain, blurred vision, hyper-photo-sensitivity and other not so fun symptoms.
Thinking that perhaps a stronger eye-glass prescription would help, I went to the optometrist, who did strengthen my prescription, as well as tell me that my eye muscles have weakened to the point that they aren’t working correctly, He referred me to a Neuro-Ophthalmologist. There are none in the area, so again my husband will drive us on a long journey. If all goes well with insurance coverage, I will be having my eyes tested in the next few weeks.
Meanwhile I not only miss the function of my eyes, I miss my fun, supportive, cyber-friends and the world inside my computer in which mind-food is abundant (oh my gosh I need to read something!) I am in bed, teeth brushed, meds taken. My eyes are blurring out and my lids shutting from the fatigue of asking the muscles that move them to work overtime. I write this now, because as soon as I’m finished I will close them and rest them through the night.
I am not able to edit as it requires reading over what I have written, so I apologize for errors. I have wanted to let you who read my blog (I appreciate you!) to know why I seem to have dropped out. I haven’t, I look forward to learning of a ways to help my eyes and tools taking struggling eyes online.
Not only will I never take my eyes for granted again, I will never take the online friends and community I have found these past years. When I could get on my computer, it was like taking a walk down a lovely street with neighbors to stop and chat with, coffee-shops and deli’s to meet my friends in and bookstores and such places for many of us to gather at once. I miss my cyber-neighborhood and all of you who share it. Hope you are each hanging in there, being kind and gentle with yourselves and finding the funny in unlikely places. Kerry
PS–Sending out love to my father in-law and to my mother in-law who have gone through so much this week. May the next weeks bring healing, peace, and “normality”.
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)
““Never look down on anybody unless you’re helping him up.” ~Jesse Jackson
I’m sitting in our trailer in a trailer park near our oldest daughter’s apartment. She is just a couple days out of major surgery and so far, is doing a good job of warming her futon and starting the healing process. To give you a visual of oldest daughter, she is tall, has short light brown hair with bright pink highlights, which look especially lovely on her bright blue futon. Shortly, we will join her at her apartment, with square footage not too much bigger than our trailer. We are a cozy group caring for her–her roommate, my husband (the able bodied ones) and her sister and me.
My husband just drove our youngest daughter to her college orientation, which she will be hobbling through on crutches because a little over a week ago, while “long-boarding” she broke her leg (her tibial plateau for those of you versed in anatomy). The tibial plateau is the top of the big lower leg bone that the knee rests on. She wont be able to put weight on it for good while and needs to wear a big ole brace.
*In case you are like I was a couple months ago, having no clue what a long-board is, it looks like a skateboard but longer and thinner. Those who long-board do not put them in the skateboard category even though they look an awful lot like a skateboard. I’m still trying to figure out why this is.
Through both of our daughter’s adventures, my hubby and I managed to take out yearly vacation in the mountains, using our cell phones to stay in contact with daughters and doctors. I am immensely grateful to both of our girls for handling their predicaments incredibly independently so their parents could finish out their vacation. Thanks to their friends and big brother for helping them do so.
My mom who lives many miles from here had surgery two hours before my daughter. If she lived near, I know we’d squeeze into the apartment even tighter, and make room for her. Time to call across the miles for a “how’s mom doing?” update.
Its also time to get ready for the day ahead. Wanted to check in and share the reasons I suddenly disappeared from cyberspace. Miss you my online friends and look forward to checking in soon and seeing how you are. Hope you are taking good gentle care of you…
P.S. When I have time to think and write, this is a good topic for posts on trying to be a caregiver when you are ill yourself, and how to take care of three people who physically challenged at the same time. (I don’t know how J is doing it; but he is coming through again).
“Finding the funny” is an imperative tool when in the midst of overwhelm. We are giggling a lot.
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.
My husband went into the kitchen to get me two Naproxen Sodium tablets this morning. (My neck and its problems have flared.) My daughter was in the kitchen emptying the dishwasher. They started talking. As my husband’s attention focused on their conversation, the tablets in his hand, that were suppose to end up in my stomach, ended up in his. Oops! Thank goodness he wasn’t holding two of my prescription tablets. He probably wouldn’t have made it to work and would have needed some care himself.
This has got me thinking of more “hazards” and sometimes amusing changes that my husband faces living with and caring for me:
-Putting his back out having to lift chunky me off the floor
-When in a work phone meeting (he works from home) and I’m suddenly shot by severe pain, having my unsavory expletives fly out to his coworkers ears
-Waking up in the middle of the night near suffocation due to one of my abundance of support pillows falling on his face
-Jumping every time his cell phone rings thinking its me needing him to pick me up off the floor
-Morphing his nature from “typical guy” without a clue about “woman attire” to a rather metro-sexual fashion expert– learning from having to pick out my outfits when I can’t…this includes the right shoes to go with them and the correct garments to wear underneath.
-Being approached by single woman who think he’s a single man, because outside of home and attending events, he’s solo most the time. (Wait that one’s a hazard for me!)
I know how fortunate I am to have this guy to help me along this chronic illness journey. It can get pretty serious taking care of someone who is sick and sometimes it can be darn funny! Feel free to share your own stories. (If you are one of those tough cookies who are a care-giver to yourself…maybe you have a story about a hazard you’ve encountered in doing so.)
*Hey its almost the fourth of July. I’ll be tucked away in a nest of blankets in the quietest room in the house when the fireworks go off–our bathroom. I miss our dog who passed two years ago, as he couldn’t tolerate the fourth of July noises either and would hide away with me. Here’s to all of our CNS’s staying as soothed as possible this weekend and to feeling well enough to have some fun.
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.
This post is in honor of dads who live with chronic illness…
- dads who balance home, work, parenting, and caring for an ill spouse and/or child and…
- dads who are ill and parent with all they’ve got in spite of it.
Below is the poem “Invictus”, written by William Ernest Henley who himself was ill with a painful bone disease. This poem reminds me of these brave and dedicated dads who in the face of oh so challenging circumstances, put their hearts into parenting.
INVICTUS
by, William Ernest Henley
Out of the night that covers me
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced or cried aloud,
Under the bludgeoning of chance
my head is bloodied but unbowed.
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.
It matters not how straight the gate,
How charged with punishments the scroll,
I am the master of my fate;
I am the captain of my soul.
(A note–Most likely due to the hundred or so age difference between Mr. Henley and me, I am less stoic and believe unconquerable souls sometimes wince, feel fear and shed some tears.)
*Thinking of all you who take the time to visit here, to read, to share. I hope you are feeling as well as can be, and if that is not so well, that you feel at peace being in that difficult place. This is always the challenge for me and one I’m facing today, If you are laying in bed right now with tough symptoms, feeling “lazy” perhaps as I am feeling, because you’re able to do nothing but watch mindless TV or stare at the back of your eyelids, let’s remember that “being” here…that not giving up in the face of daily illness and pain, takes an “unconquerable soul”, and do our best to celebrate (not judge) our own.
Back to “The Housewives of New York City”–yes, my mindless tv shows are that mindless…providing quite the cognitive rest!
*I am at my “first home” now. I wrote this a few days ago, but am still feeling the warmth of my “second chemically safe home”.
I lay here in the bed given up by my sister in-law for my comfort. The bathroom off this room contains the “safe” shampoo and soap we use at home. She bought them. She removed every scented candle and even though we live far away, uses “safe” laundry products, so that when we’re together the products we use don’t get between us.
I have written much about J, my husband, as my hero…who steadfastly takes care of me, all else that life requires and does so as if it is easy. He and his sister inherited an awful lot of matching genes. She is a single mom with two children… loved, strong, compassionate children. I watch her this weekend, take care of one who of her kiddos who is running a fever, while hosting us, directing us all through a graduation, a swim meet and going to work each weekday.
Yesterday, J, my daughter and I visited my family- my parents and then my brother and his family who live within an hours distance from here. It was a good day for relationships, but a challenging one physically. I hadn’t seen the garden my parents have lovingly created or the changes to the inside of their home which make it feel like a vacation beach cottage. I appreciate their love, their hospitality (my mom makes sure we do not leave hungry!) and how hard they care about making to making their home “Kerry safe” (almost there).
Because I have not been able to see my brother and his family these past years as my illness along with my severe reaction to chemicals progressed (it takes time, trial and error, communication and an ability not to take my reaction to chemicals personally to create a “safe” environment), I was inadvertently exposed to many harmful chemicals. The toxins are hiding in baby wipes, antibiotic hand cleaner, air-freshener…all so seemingly innocent. It was wonderful to see my new born niece, my “lollipop” niece, my ‘love to play sports at two nephew’–to see my brothers beautiful family in their own home…but I left there with my CNS (Central Nervous System) intoxicated (without taking a sip of alcohol).
I had to close my eyes, under sunglasses, under a hat over my face, as my CNS could take no more input–no more chemicals, lights, movements, sound etc…without causing weakness to paralysis, pain, twitching, etc…
As my daughter drove us the hour back to my sister in-laws, I found myself thinking of her warm, “chemically safe” room waiting for me to recoup in and of my mother and father in-law, niece and nephew waiting there. I thought to myself “almost home”. Is there a greater way to feel about someone, as if their home is your own? To feel this as someone with an illness that makes me incredibly high maintenance, makes me smile from head to toes.
I lay here in bed this morning, thankful to have been able to get out earlier and arrive at my niece’s swim meet just in time to watch her swim butterfly in a relay race; I have waited ten years to watch her swim. She swims with grace; part fish it seems. I hoped to stay the morning to watch her races that followed, but the sunblock sprays, the crowd of people and the blaring music overwhelmed my CNS quickly. With my left side paralyzed J drove me back to his sisters.
He propped me up on pillows, turned on the TV, made sure my water glass was full, my computer and phone were charged and that I had everything I needed. I can picture my niece swimming the butterfly now–because I saw her, but for a minute, her grace in the water is engraved in my mind. J, my daughter, her grandparents and my sister in-law cheer her on. I am with them, as I rest here at “home”–
Home, a place where you know there is nothing to be, but what one is…and that who one is, is loved and accepted completely. Home, a place where one feels safe. I am grateful for this second home, for my sis in-law, niece and nephew, who care so much and have worked hard, to make it so.
“Why do we still try to live as if we’re “normal”?, J asked me in the midst of a long weekend of celebrating our youngest daughter’s high school graduation. That evening I reacted to a chemical in a a loved one’s hairspray and I had gone down for the count for the rest of the night. This required much care from J as he did his best to continue to be the best host he could be.
This morning, our guest now all on route home, I asked J, who is both back at work and sick with a bug, “Was it worth it?”
”OH,YA!” he answered without hesitation.
It costs a lot to have a celebration when you or someone in your family is sick. I know there’s a chance there will be a time its too much for us to host celebrations… even with the help of our family who “gets” that we aren’t “normal”,roll their sleeves up in the kitchen, serve themselves, and do the best they can to wear only “Kerry safe” products.
Until then, the ones we love and the memories we make are priceless.
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?
Oh what a month this has been. Murphy and his law have settled into our house and we’re just beginning to accept him with a sense of humor. This has been a time of change as my kiddo and his family joined us in living within these walls. What an adjustment for all. I am learning a lot…as I know everyone is. It takes awhile to understand each person’s way, then how to combine them into a “whole” that runs smoothly.
The bug I caught from my cutie-pie granddaughter triggered chronic bronchitis/asthma–I’m hacking the days away as well as the nights. Consequently, my hubby is quite sleep deprived (and usually good tempered, is a little on the grumpier side.) The following doesn’t help my cough or my hardworking tired hubby…
Our upstairs bathroom floor we now know, was overwhelmed with moisture and could hold it no longer. It rained the water through the kitchen ceiling, which now has a four by four gaping hole in it…and a few boards, with some asthma loving mold!
My daughter’s tire exploded on the way home from school–and other happenings of that sort have been quite abundant. There’s more that I won’t get into…except to mention that in a week, much loved family comes from out of state to celebrate my youngest daughter’s graduation and all will get to share a “soggy” bathroom and a kitchen with a gaping hole in the ceiling.
Murphy does not care if we are sick, in the midst of an overwhelming adversity, how much money we in your bank account or whether company is coming. Being human requires plenty of mops and towels and such…
ME/CFS all by its little ‘ole self is Over-overwhelming. It’s hard to mop and wipe up messes when exertion is often impossible. Throw extra stressors on top of debilitating chronic illness and “Oh what a messier mess am I”.
This messier mess that I am is surrendering to Murphy. In his travels he manages to visit us all…and always when we least expect him.
“Everything in life depends on how that life accepts its limits.” -James Baldwin
Hi friends, as all of you know with chronic illnesses such as ours, we can predict with certainty-unpredictability beyond the normal unpredicatability of life.
I aimed to have my post/article about how having a parent with ME/CFS (and MCS) affects our children, written and posted on May 12th. Life and this body of mine have changed my deadline. I want to give this important subject the care, time and thinking it deserves. I’m not able to meet my Awareness Day deadline because…
I’ve got a cold. How wimpy does that sound? Super wimpy…it sounds incredibly, super wimpy. I don’t get them often, but when I do, a “normal” people bug” on top of my “normal for me” chronic illnesses equals, a physically messier, less functional me. I am now in week number two. Instead of getting better, congestion settles into my pre-existing conditions. Weak breathing muscles and asthma, make it even harder to breathe and exert. My sinuses with chronic manageable problems, have become inflamed and trigger daily, almost constant migraines (the huddle in the dark with the curtains closed, light from my laptop and the tv hurt and one is growing right now because I’m on the computer kind of migraine).
I’ve fallen out of Cyberspace. I feel like Smeagle from Lord of the Rings, as I am most comfortable in the dark right now. I miss my cyberfriends, as I’m avoiding my lit up (even at the dimmest setting) pain causing laptop. I miss corresponding and keeping up by blog and email.
Perhaps I can wiggle something “awarenessy” out of this boring post. If you have a chronic illness and get a “normal cold” on top of it, how does it affect you differently than it does people who do not have underlying health conditions…or how does a cold affect you differently than when you got one when you were healthy?
Another something ME/CFS “awarenessy”. Most of us with it are already light sensitive, some so severely they can’t ever use a computer or watch tv and always having to have the curtains drawn. Wearing sunglasses inside is common, wearing them outside is imperative.
(*Big shout out to you who went into the swirl of emotions of how our illnesses affect our kiddos, answered the questions and sent them back to me on time! I will handle them all with care and look forward to putting all of your input together as soon as I’m able.)
***Lights out for now…
