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.
Hi all of you much appreciated folks who read my blog. Welcome to my first ever “Grandma” blog post. Sunday afternoon, our Granddaughter, Kayla, was born. Our son and daughter-inlaw gifted us with this tiny bundle of femine, delicate, adorableness.
(Aunt Molly, away at school, we miss you and can’t wait to take pictures of you and Kayla when you’re home for springbreak.)
I wrote this post when I would have normally not even picked up my computer, because I was neither physically or cognitively able to. I could do nothing but lay in bed, not read, or crochet or even watch tv. I wanted to see what words would come, if any…and if they did, I wanted to post them “as is”. My husband helped prop my arms up on pillows and settle my lap-top so I could type.
This is what I wrote:
I am tired. I offer this sentence because it is what I live, what we live who have CFS. I am too tired to bathe, to make food, to pick up my feet when I walk, to hold a conversation, to write more than a few words. Sometimes I am less tired and you may see me out somewhere, but when I come home I will be tireder.
I find my slow thoughts finding you, my friends who are also tired. Like a dot to dot coloring book page, my thoughts travel from this little dot that am, to the dot that is you and I find comfort in our tired connection.
“Tired”, is what my fingers typed. I even wrote a non-word “tireder”. It’s interesting to me, because “tired” is an inaccurate word for what those of us with CFS experience, as is “fatigue”. We are neither. We are profoundly exhausted, wasted, weak and very ill, yet the words that comes to my mind often when I’m feeling my worst, when I cannot even move, is “I’ve never felt so tired in my life”, “I’m tired”, “I’m so tired”. Renee, at Renee’s Reflections said it well…sometimes we are so profoundly exhausted that “tired” is the only word our brain can come up with.
I have searched for hours these past days, through every poetry book I own, through my own poems, for one to post in honor of Haiti. Not one poem is speaking. I’ve decided to surrender to this silence of poems…a silence which seems to say…there is no poem that is big enough for Haiti.
Haiti, where mothers, fathers, little ones, old ones walk among their dead, leave their loved one’s bodies because it is all they can do. How do they breathe? How do they breathe with their bellies screaming for food, their tongues as dry as desert sand? And the mama whose son survived the quake but fell to a bullet over bags of rice…how does she breathe?
I hear the Haitians sing, they sing in the evenings; they sang and prayed on Sunday morning. It takes a lot of breathing to sing.
I can’t help but imagine the people trapped in the rubble for days, waiting for rescue, releasing hope in a single dying breath. I find myself contemplating if breathing isn’t the most courageous act.
May we each take a breath, a deep breath, a slow breath, in honor of the people of Haiti.
Solve CFS, You Tube channel, has excellent and powerful videos of the realities of this debilitating illness. Currently videos of Mondays XMRV/CFS webinar with Dr. Bateman are posted there (in case you weren’t able to take part Monday). Give Solve CFS a visit and feel encouraged and affirmed by the visual responses to the CFIDS Association of America’s recent survey question–what would you do tomorrow if you were cured today?
*If I were cured tonight, tomorrow morning, I’d spring out of bed and make the coffee before my husband woke up. For once, he could “wake up and smell the coffee”, instead of always having to wake up and make it.
Monday morning, I took part in the XMRV-CFS Webinar with Dr. Lucinda Bateman as the speaker. Literally I took part…because with this CFS cognitively affected brain of mine I took the first third, or the first thirty minutes, then had to leave my hubby to the remainder because my brain lost its charge, meaning it had taken in as much as it could process and needed a good long rest before it could take in more.
How I appreciate the CFS dedicated doctors and CFS non-profit organizers who must work extra hard to condense scientific information into a time frame for CFS brain processing. I often find myself looking at my cell phone charger, dreaming of one made especially for my brain. How amazing it would be if I could recharge my brain for a half hour and it would run like it used to for 24.
In order to get a full scoop of information given throughout the Webinar (About Retroviruses, what we know about the specifics of the XRMV as a Retrovirus, details about research and much more), take a visit on over to The CFIDS Association of America or OFFER (both links are under Chronic Illness Support on the right side bar of this blog.) Take a short read below for the gems I was able to steal away from my third of the Webinar.
Dr. Bateman took us on a chronological journey from the fall research revelation of finding XRMV in the blood of a high percentage of CFS patients and the excitement throughout the CFS community that followed. Then she brought us to the January British study which didn’t find the retrovirus in its CFS subjects, which caused confusion and a wondering whether or not we should still be excited.
No need to throw all our excitement away, for a number of reasons: what we know about XMRV, even exactly where it should be looked for in the blood or cells, is still very little and the definitions of CFS are many and vary considerably. Both of the above have a direct effect on research findings.
It is possible for two different studies to inadvertently (or with a bias) test people who fit into one very broad definition of CFS, and another to test people who fitted in a more narrow, honed definition. It is possible for different studies to be looking at different parts of the blood/tissue than another study is.
Hope…there is so much research going with XMRV right now as you are reading this. We are going to learn more, and more and more. The blood banks, Cancer researchers, CFS and ME researchers…public and private researchers, are all working hard to learn more about XRMV.
Here’s the worst case scenario after all the findings come in; Kerry’s translation of Dr. Bateman’s worst case scenario. We learn the virus is found only in a sub-set of patients with CFS and it isn’t the cause of the disease. XMRV is long, long, long at last, bringing attention and focus by the scientific community to this incapacitating illness. (Research findings could even uncover other important information that will help us to further underestand and treat CFS, as well as prostrate cancer and other illnesses).
One more exciting gem… Suzanne Vernon, Virologist and the CFIDS scientific coordinator, shared that the CFIDS Association in the midst of creating a Bio-bank. This means that each of us, where ever we live, can be a part of putting the scientific CFS puzzle together! Look for information about this; it should be coming out soon.
You can’t applaud on a Webinar, but you can fill out an evaluation form. Its not the same. You can’t really applaud on a blog either, but I can try…Clap, clap, whistle, stand up, and clap more. Thank you CFIDS Association, Dr. Bateman and Suzanne Vernon for giving us a greater understanding of what is happening right now with XMRV and what it means for the CFS community.
The “patient hope” Dr. Bateman conveys with her scientific knowledge, her involvement in the research community and her dedication to her patients, is contagious…the major symptom of “patient hope” is…peace of mind. It is a definite means of CFS brain recharging.
Sue Jackson (www.livewithcfs@blogspot.com) just shared another way each of us can be a part of research and can do so now. The Whittemore-Peterson Institute is creating a Databank of CFS patients. Visit www.WPInstitute.org for more info.
I am on “wipe out” and have spent the week compressing the sofa cushions. Don’t have enough cognitive energy to string words together comprehensively, so will share Shel Silverstein’s fine strung silly words which speak to me right now. Doing not much more than compressing sofa cushions has left my self-esteem a bit flattened too.
TELL ME
Tell me I’m clever,
Tell me I’m kind,
Tell me I’m talented,
Tell me I’m cute,
Tell me I’m sensitive,
Graceful and wise,
Tell me I’m perfect—
But tell me the truth.
I just asked my teenage daughter, who is great with words, to help me find a good salutation to end this post with. She said “I don’t know Mom, I’m not old.”—see what I mean about self-esteem? Feel as good as can be this weekend, and if you feel like hell, feel good about you…you’re perfect, honestly! Kerry
I am incredibly grateful to be in the care of one of the top CFS doctors in the world, Dr. Lucinda Bateman. The CFIDS Association of America is putting on a Webinar in which Dr. Bateman will speak about the XMRV virus on January 18th at 12:00 Eastern time. The Webinar will be moderated by virologist, Dr. Susan Vernon.
Last Friday I had an appointment with Dr. Bateman. I travel five hours to her office. Every moment of my time with her is worth each mile. In person I had the opportunity to hear her knowledge and thoughts on the XRMV findings, what they mean and what’s coming next. It was fascinating. I came away grateful not only to be in the care of such a doctor and scientist, but excited to be a part of the CFS community during this time of discovery.
To register for the Webinar, go to The CFIDS Association of America, Grass Roots Action Site.
“Yocadita” is an acronym I just made up. It stands for the part of me that incessantly yells, “You can do it anyway!”
My “yocadita” has been good to me. She has enriched my life abundantly, giving me confidence and perseverance. She has helped me reach goals and dreams and to surmount adversity. She is also one tough adversary, especially now that I truly physically and often cognitively can’t possibly, without severe negative consequences to my health, “Do it anyway”.
This week my “yocadita” is full of energy. She is yelling through her megaphone from behind the sofa like a super duper, rah-rah cheerleader. This is what she’s chanting that “I can do anyway”, this week.
–You can still be the mom who comes in and helps after your grandbaby is born. You can fill your son and daughter in-law’s freezer full of casseroles. You can get to stores and collect the baby items they haven’t been able to get (they both work and it is looking like the baby is going to show up early). You can get to their apartment a couple mornings a week and help however you can. So what if you are homebound or your arms are too weak to fold your own laundry, somehow you’ll find a way to get to their place and fold theirs. You can do it anyway!
–You can keep up in the online world, blogging, facebooking and emailing. Stay connected Kerry, keep up to date on research and advocating for chronic illness. Keep on writing your creative stuff. Don’t let the subsequent worsening of your illness, that the cognitive exertion causes stop you. You can do it anyway!
–You can look slim and fit. Don’t let the fact that you can’t exercise or move much stop you. Take out the yoga mat, climb the stairs at least three times today. Maybe this time it won’t flatten you for weeks. You can do it anyway!
Wow, writing that felt good…and hey, its quiet, no yelling coming from behind the sofa. I think she’s even slinked out of the room. I want to add her as a post category and out her whenever I need to. Yeah! I used “want” because truth is I might be too exhausted to do that today and then I might forget to do it tomorrow and the day after and so on.
My “yocadita” would have said I “will” add her as a post category. Outing her is working for me…reality is winning! Writing this post has used a good part of the daily trickle of energy that CFS allots me and I still have to copy and paste it into my blog. I’m tired, really tired…no casserole making today…perhaps if I can I will get that load of towels waiting on the laundry room floor into the washer, but if I’m too exhausted, I’m not going to do it anyway.
This morning our routine resumed, alarm clocks rang, water pipes creaked, the coffee pot gargled, rice krispies snapped, crackled and popped. My husband, youngest daughter and I sat down with our warm drinks for my favorite part of our “normal” morning routine. For a few minutes we chat and share reminders for the day ahead…ie. for mom to remember to pay the bills and check if my daughter has enough money in her account to put gas in her car.
After yesterday when our oldest daughter, got on the plane back to school, marking the official end of our holiday break together, a bruisy blobby feeling was hanging out in the air and running through each of us. Hubby cleared his office of wrapping paper, bows and ribbons, and later in the day dismantled the Christmas tree. Youngest daughter, after escaping her gloomy parents to go out to coffee with a friend, did her laundry and set down for the official break is over reminder—homework. Later, she set off to work at the coffee shop and my hubby and I decided we had to get out of the house.
I got myself as presentable as possible after a couple days of a Gastroparesis and Migraine flare, which I spent, curled up with the barf bowl and the bedroom curtains drawn. I wasn’t looking so good. We climbed into our “mid-life fun” truck and took a ride. It always amazes me how good even a little bit of time out of the house is for the spirits. We talked, ran an errand, and an IC attack set in—which we just had to laugh about (Yeah one system mending, oops another goes down). Even with my bladder a flare, we came home smiling, feeling the “vacation’s over” heavy air moving on out.
I took my bladder soothing meds; then we had dinner together. We talked about all the good stuff in our lives and what a great Christmas time we had, which is why it made it so hard to say good-bye to it. We felt grateful that our daughter was able to be home for over two weeks, and all three of our kids and our daughter-in-law were with us on Christmas Day.
We sifted through memories of the girls and their dad and I in the kitchen doing all of our baking in one afternoon… Dad stirring the fudge for what seemed like hours… our oldest daughter working hard rolling out the Italian cookies, our youngest washing the baking bowls and spatulas, then my decision that we needed to make another batch of Italian cookies, this time extra soft ones that my tummy could handle.
We continued to reminisce about the ongoing games of Rummikub, and the Christmas afternoon game of Risk that has become a family tradition. Minus me, the whole family plays Risk. By Christmas afternoon I’m tuckered and resting, but inwardly smiling at the sound of my son and oldest daughter’s competitive voices sparring above laughter.
During Christmas break, we went out to dinner twice and got to two movies (this is quite a feat for me) and a treat for us all when my body doesn’t break down and change our plans. We remembered the days of snow which our daughter, who goes to school in a non-snowy place, had looked so forward to and the mornings of sitting together in our little great room doing not much more than sipping coffee, munching toast and just hanging out together in our sweats or pjs.
Most of all we treasure our memories of Christmas Eve and Christmas…which for us this year felt extra magical. We hoped it would, this Christmas before our youngest is an adult away at college and our first grandchild shares next Christmas with us, beginning a new generation of traditions.
Now, on this “normal” morning, I sit on my gold cozy sofa wearing my new pjs, which I don’t want to change out of. I can hear the timber of my guys voice as he talks on the phone in his office overhead. I paid our online bills before I started writing this. I hung up the 2010 calendar. I’ve started a grocery list with “laundry detergent” at the top. Our chests of drawers and hangers are nearly empty of clean clothes and the hamper is spilling over. How terrific it was to not even think about laundry for two weeks!
Yet, there’s a comforting rhythm in routine which I feel settling in. Welcome 2010. Happy New Year. 
“Home is a warm place where you can be loved. Home is a place where you can sometimes learn things. Home is where you can rest. Home is sometimes a place where things can change.” Son, age ten, from Where the Heart is, “Where Things Can Change.”
Sometimes I think I should have named her Noel or Holly, this daughter of mine who loves Christmas. We first discovered her Christmas passion when she was just shy of two and able to hang ornaments on the tree for the first time. It was a Saturday evening, her eight o’clock bedtime arrived. She was decorating with such focus and content that I let her continue. She didn’t stop hanging ornaments until ten o’clock when she was scooped up by her daddy and carried upstairs. She cried until she fell asleep still holding an ornament in her little hand.
In January my Christmas loving baby turns eighteen. Yesterday she decorated the tree. I watched her space the bows evenly around the boughs, then choose ornaments carefully. First, she hung the small photo frames of her and her sibling’s baby pictures. Then she placed the ornaments they made in school, or at home with felt and stuffing or posterboard and paint. Looking down at the decorations spread across the ottoman, she asked me which ones were my favorite, which ones I wanted her to add next. I chose a few and then told her to choose from the rest, the ones she likes best.
Before my daughter hangs an ornament she stands back from the tree and accesses the space between the one’s already hung. She makes sure that no two colors or shapes hang together in redundancy. She takes her time. Yesterday, I laid back listening to soft Christmas music and watching her graceful movements as if she were a Christmas Eve snowflake.
Next year will be different, if life follows her plans, at this time next year, like her older sister, she will not yet be home from college. I have been contemplating how to decorate the tree myself next year. I’m thinking that my husband will take the tree from the attic just after Thanksgiving and set it up soon after. Then, I will take my time. One day I will add the bows, and for as many days as it takes me, I will hang an ornament or a few. I will make sure that they are evenly spaced and that no two similar shapes or colors hang too close together. Knowing me, I will have a good cry.
A snow globe, that’s what now feels like…like she and I are in a snow globe that has just been shaken and glittery snowflakes are floating around us… sparkling and twinkling. We both know that Christmas time ends, snow melts, glitter falls to the floor of the globe. She will turn eighteen; she will graduate from high school. Next year will be different. But for now, right now…I am smiling at snowflakes.