LEMON-AIDE

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)

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.

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?

I start ME/CFS awareness month (MCS and Lyme as well) with Patti’s beautiful words about living with these illnesses.  Thank you Patti for giving me permission to post your wisdom.

“Last week I went with my husband to a doctor’s appointment. As I sat waitng for him I picked up a book about living with a hidden disability. It was as if it was written for me. I sometimes feel as though I am the only one on this rough road and then I touch base with others and realize there are so many of us who are hidden away. We are the fighters who keep on going despite losses. The losses are so vast that sometimes you wonder if you can deal with any more and then you read another’s story and realize you really can handle it and you might even start to see some of the good things that have happened. Sometimes you really have to look hard for those little blessings and sometimes they just jump right into your arms. Sometimes I think my worst enemy is time….too much time to think and worry, too much time to agonize over relationships. Sometimes that overwhelming fatigue that makes me just stop and take a nap is actually my best friend. So sometimes I need to stop and lick my wounds before I get back up, brush myself off and try to get on with the business of living. It really is about how you ride the trail.”

“Success is getting and achieving what you want.  Happiness is wanting and being content with you get.”  Bernard Metzer

How fun to write a “happy list”.  Sue at Learning to Live With CFS,  passed “The Happiness Award” to me and my blog. Thank you Sue, who continually inspires and teaches me.  This award is one that passes happiness forward…recipients share ten things that make us happy, and then share blogs that do the same.

Here’s my happy list (its hard to keep this at 10):

• sitting around the dining room table with my whole family
• watching my son be a daddy to his new baby girl
• driving around with my hubby in our cool blue “mid-life” truck.
• lattes, shopping and talking with my youngest daughter
• when the phone rings and I see on the caller ID that its my oldest daughter
• knowing my niece and nephew are coming to visit soon
• camping in the mountains in our travel trailer
• crocheting a blanket for someone I love
• being in the water (pool,ocean, as long as its warm)
• the return of the duck couple each spring to their “pond”, our pool, where they are swimming right now.

If you don’t have a blog, please feel free to write and share a happy list.

I have found two Gastroparesis blogs recently.  This brings happiness and adds to the online GP community, as there aren’t a whole lot of GP blogs out there. These two woman are not only honest and real but are funny…giggles lead to happiness, so I pass the Happiness award to Shoot Me Now and GastroDisastro.

I wish I had the energy to list and link to my favorite blogs that bring me happiness….there are many and most are on my blogroll.  I do want to mention a blogger who was one of the first I connected with when I started blogging two years ago.  Her name is Renee, and her blog, is called Renee’s Reflections.  For two years her blog has felt like a cozy sunroom, where I can sit on her sofa and “listen”. For two years her comments and sharing on my blog, encourage and inspire me….no matter how she is feeling or what she is going through she spreads happiness throughout the CFS/LYMe community.

BEST MASK

by, Shel Silverstein

They just had a contest for scariest mask,

And I was the wild and daring one

Who won the contest for scariest mask–

And, (sob) I wasn’t even wearing one.

One of those days it is…so I picked up Shel Silverstein’s Falling Up and found this poem…it made me giggle…

Gosh, a giggle feels good…especially when we’re not.

There’s something to this poem that relates to being really sick…lets see if I can get my fuddled brain to make the connection.  When you’re really sick, you don’t feel pretty and you don’t like to look in the mirror.  People sometimes say “you look pale”, or “you don’t look so good”.  Your hair usually looks funny. My daughter laughs when she notices the back of my head when I’m really sick, because my hair sticks up when I’ve been laying down for a long time.  If you get up the courage to look in the mirror, you might notice, at least I do, half open eyes with dark circles around them and a puffy face. That’s the “scariest mask part”…

When you’re sick it is a whole lot harder to put on your social mask, let alone find it.  It is hard to put on your favorite clothes, your power clothes, let alone launder them.  It is hard to answer, when someone asks “how are you?… “I’m doing good”… and other socially acceptable things people are expected to say…so you might answer something honest and scary like “not so good”…and if you answer “I’m shivering with pain and really hungry because I don’t have enough energy to walk to the kitchen”, that’s really, really scary….so most of us never really say that even when its true.  If we did…the person asking might think we are joking (like playing a “best mask” or best scary answer to “How are you?” game).

So, when we are feeling really sick we can’t wear masks…and sometimes when we’re really, really sick, we can look scary enough and vulnerable enough to win a “scary mask” contest when we’re not wearing one.

I love kids books because they are full of truth, like kids are…and like people who are feeling really, really sick can be.

ME/CFSers I’m about to share a part of CFS that embarrasses the hell out of me.  I’m hoping some of you can relate…that I’m not standing out here alone and you guys are thinking “…what the heck is she talking about, that never happens to me”.

If I am involved in a conversation that includes concentration for a length of time, I slowly but surely get “punchy”–yes, but minus the cup, the punch and the vodka.

I like to laugh and joke, but the longer I converse the more I do so.  I lose my train of thought and my words more than is the normal pain in the butt “lose your train of thoughts and words” CFS symptoms.  I struggle to say words correctly.  I have started to lose my “what I choose to say or not” filter and found myself talking about something I would have normally kept to myself.

If I continue on, not realizing this is starting to happen, the symptoms will get more and more pronounced.  If you didn’t know me and the fact that I can’t drink more than a sip of beer without feeling dehydrated and sleepy…you’d think I had a drinking problem and stopped by a bar on the way to see ya.

My appointments with Dr. Bateman last an hour and sometimes beyond, because I have to travel aways to get there and can’t see her as often as if I was local.  By the end of our intensive hour (meaning I have to concentrate, answer her questions, work hard to remember stuff so that I can answer her questions), I begin to talk more, joke more and giggle more…yes, like I’ve had a few drinks over my limit.

Feeling embarrassed about this at my last appointment I said…“Really I haven’t been drinking Dr. Bateman…this happens to me when I talk with someone for a long time”.

“Oh”, she said,  “I just talked about how that happens in patients with CFS, at a conference this past weekend.”

Its CFS normal!  Long time concentrative conversations can turn us into pseudo-drunks.  So if you too find yourself on a long phone conversation, or talking for a lengthly visit over tea with a friend and think, “geez, I seem tipsy”…you just might.

I’m hoping to ask Dr. Bateman more about this if it fits into our next appt. I would think it goes with the cognitive exertion of our brains, which exhausts our brains.  Concentrating on conversation and keeping on subject for a long time is like going for a walk that is far beyond our physical limits…we crash with exhaustion.

I also find long conversations physically exhausting.  So…when I’m walking away from someone who I’ve been having a long visit with over cups of tea, who listened to me start sounding like I’d been spiking my tea, I wobble as we say good-bye, lean to the left (my left side has weakness probs) and look like I spiked my tea as well.

“Do what you can, with what you have, where you are.”  Theodore Roosevelt

My ME/CFS Spring “exercise-INTOLERANCE” work-out regime has begun.  I started two days ago, cane in hand, slip on tennis shoes on feet. I walked once around the perimeter of the backyard, then collapsed on the sofa. The next day I walked the perimeter twice, once in the morning and once in the afternoon, collapsing on the sofa after each lap, but feeling darn good about myself. I know there will be days I can’t make it around the backyard perimeter, but I will get out there when I can.  My ultimate goal is to be able to walk around the block with my walker and my husband come summer. When we’re camping, I want to be able to do as much walking as possible during our “wheelchair walks”. (A “wheelchair walk” is when I push my wheelchair as far as I can, then I sit in it and my husband pushes me).

Yoga has been shelved during this long crash.  When I am strong enough to do yoga again, my goal is to spread my purple yoga mat on the family room floor and stretch on it, at least every other day.  I do yoga in the evenings, because stretching makes me sleepy. I have to do most of it laying down or sitting.  If I stretch for more than a few minutes, I crash; still I love doing yoga and look forward to doing whatever I’m able.

Do you have a ME/CFS movement routine? movement goal?  If so what do you do or what can you do?  This will be different for everyone.  In the early days of my illness I could still slowly work up to walking a mile and a little more without a cane and by myself.  I was able to teach oh so slow and gentle yoga to others with ME/CFS/FMS.

Again, I stress, the amount of movement each of our bodies can tolerate will be different. No matter where we are with movement, be it pinky finger curls, ankle circles, gentle chair dancing or taking fairly long walks…its great we’re moving however we can.  It’s important that our “exercise” stays within our individual physical limits, so we don’t crash and have to start all over again…

Right now, I am wearing a pair of light blue flannel pj pants, an old white hoodie  and one of my hubby’s white t-shirt’s, which hangs out from under the sweatshirt.  On my feet are a pair of fuzzy- wuzzy grey and white striped socks.  I’m wearing one cute thing–my favorite hoop earrings.  I’m not wearing a bra.  Lately when I’m feeling crashed and flattened, I find that locating a bra, putting it on, hooking it in front, then twisting it around and putting my arms in the straps, demands more energy than I have… so, ha!…I’m looking flattened too!

How about you?  Right this minute…what are you wearing?

When I was little I remember my parents getting a call to a “come as you are party”.  This gave me the “whatcha wearing now?” idea.  You were supposed to wear to the party whatever you were wearing when you answered the phone and received the invite…your robe, boxers and slippers, gardening overalls etc…

Since a good lot of us are at least some of the time homebound and bedridden.  Since often getting to our showers and wardrobes can use up more energy than we have some days, I thought I’d throw this question in a post now and then, cause I think we probably have some fun and unusual answers…

(Posting photos would be all the more fun, but I’m not that brave…)

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.

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.

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.

Article in Science magazine, reports the news those of us with ME/CFS have been waiting for.  A strong link to a virus (similar to HIV) has been found as a probable (but not yet proven) cause.

Progress how slowly it moves…how long we have been waiting.  For those of us with ME/CFS, our journey is one not only of physical illness and loss of function, but one of stigma and judgment both within the medical world and society.  It is a journey of hoping and working for research to find answers and awareness of the reality of ME/CFS to grow.

What I feel after reading this article is beyond words.  After twenty years of living with ME/CFS… of losing people I love who did not understand…of experiencing inhumane disenfranchisement in the medical community…and living with one heck of a disease…

…after twenty years of my children, my husband and I doing our best to live up to my youngest daughter’s mantra, which she wrote for the family when she was five in big blue crayon… ”there’s no such thing as giveing up!”… We are almost there…We are almost there!

If you haven’t read this article yet, don’t miss it.  If you have ME/CFS or love someone who does you will want to dance.  For even if this hypothesis of cause is found incorrect…CFS has made the scientific magazines…the biggest newspapers…awareness of the reality of ME/CFS is growing.

Wow! Wow! Wow! Dance! Dance! Dance!  Shout! Shout! Shout! 

There is a good chance, that those who in the near future who suffer the misfortune of being stricken with ME/CFS, will find a compassionate medical community that understands and works with them to regain the most health and function possible…and do so without judgment that its “all in their head”. 

Wow! Dance! Shout!

Chronic illness tags along, wherever we go, whether we want it to or not.  Tonight I tried to ditch mine in order to go out to a “last day of school”, yearly tradition, dinner with my family.  What a dumb “ditch my CI” idea I tired.  I’m paying for it now as it’s two thirty am and I’m wide awake.  My heart is beating too fast and my stomach lining feels like it’s been bathed in acid.  Since I am awake now, I will most likely be extra sleepy tomorrow.

This has been a week of constantly changing Barometric Pressure, which my brain is unable to adapt to normally. One of the symptoms this causes is similar to narcolepsy. I fall asleep in the early afternoon, wake up mostly paralyzed and struggle to talk. After a couple hours I gain some movement, but cannot shake the sleep-like state and fall easily back to sleep again.

Today was my daughter’s last day of school. I fell asleep early this afternoon and once again could not wake up.  I wanted to go out and celebrate, I wanted to feel awake so badly, that I asked my daughter to buy me an iced espresso with two shots.  I managed to be more awake then I have been in many days. I do not often drink heavily caffeinated drinks. “Coffee” for me in the morning means warmed soy milk with just enough coffee added to taste. I do not drink soda, yet I had two tall glasses of diet pepsi with my meal. After the double espresso, and soda, I felt more wakeful than I have in days. I was able to stay awake and enjoy my daughter, her boyfriend and my hubby, a fun dinner at a tavern, a delicious burger, and live music.  Was it worth it?  Yes for the fun, no for the physical fall out.  There is no ditching chronic illness, it finds away to tag along anyway.

I can only laugh at the timing of these narcoleptic like states brought on by this week’s crazy weather. Our son (our oldest kiddo) is getting married in just two weeks.  My husband and I are hosting the wedding. Much of our family will be visiting from out of state. How am I preparing?…by sleeping more than half of each day away!

And you know what? I don’t have a choice…unless I take on another barrage of caffeine–NOT!  So, I have to surrender, let go, let be, accept that what will get done will be enough. I have to accept that I will not be able to have clean carpets or grime free kitchen cabinets. I won’t be able to stick my hands into making sure the decorations, the cupcakes, the rehearsal BBQ are all up to my expectations. Instead, I need to turn my sleepy thoughts towards love (the essential ingredient to a wedding) emerging through all the imperfection…even if all that I imagine can go wrong, does.

Chronic illness takes no time off for weddings, births, vacations, funerals etc…It is possible that after my son and daughter-in-law say their vows and I make my way to the reception hall, that my brain will put me to sleep, right there and then in the midst of our guests. 

I am ever humbled and continuously learning that I have such little control over life. That all I can do is remember to breathe, and when I am able to be truly awake…that I be just that… awake…taking in each moment, each color, sound, taste, feeling…and most of all the presence of those I love.

So, my online friends, I am awake at the moment and wanted to shout out a hello. Here’s to celebrating when we are able to participate in events we long to and to accepting as peacefully as possible when we can’t.  Here’s to being realistic too…I know that if I fall asleep and miss our son’s wedding reception, my peaceful acceptance will arrive only after I’ve kicked at it, offered it a tirade of ticked off words and had good sob!

There’s no ditching chronic illness, yet I dream of a “chronic illness babsitter”.  I would shake out of my illness much like I would a dress, set it in a playpen or the like and leave it on the sitters care for a few hours. (I know my husband and kids would second that!) 

“Once you choose hope, anything’s possible.” ~Christopher Reeve

I became disabled by ME/CFS at 29. At that time I had taken a few years off from my chosen and much enjoyed career as an elementary school teacher to be a full time mom to my three little one’s (under the age of six).  I was never able to return to teaching. My husband became a single parent outside of home and often inside on my sickest days. My little one’s grew up with much love, but having to take on a responsibility beyond their years…helping to care for an ill parent.

Now, I am in my forties.  My illness has progressed with the greatest damage to my neurological and cardiovascular systems. I have lost permanent function, coordination and strength. I am not able to stand up for longer than minutes at time due to drops in blood pressure. I need to use a walker outside of my home and am mostly homebound. 

Though many ME/CFS patients are as ill as AIDS and Cancer patients in the last stage of the diseases, most can not find a doctor who knows enough about this illness to treat it. Imagine waking up one day feeling like you have been hit by a truck. ..you can hardly move from weakness and exhaustion…your body is battered by severe pain, your cognition has slowed. You go to the doctor because you want to feel well again.  You need to go to work, to care for your children, to do the tasks the living requires.

The doctor takes a blood test, it comes back normal; he tells you that you are fine, or perhaps are just under too much stress.  You go back home as sick as when you entered the doctors office.  You keep hoping the illness will resolve on its own.  When it doesn’t you continue searching for help.  You go to another doctor who performs another test (usually to rule out Lupus, or MS…which ME/CFS symptoms can mimic). The tests come back negative and again you are sent away.  How you miss your old healthy self.  How your family needs you to be your old healthy self.  So you keep on trying…a neurologist, a cardiologist etc…

Years pass, you become progressively more ill, losing more and more function and independence.  Occasionally a new doctor will think of another test to try, which most likely also comes back negative…and yet the damage to your body continues. This is the common journey of those of us with ME/CFS as we navigate the medical world.

Imagine as well, being the spouse, child or parent of someone with ME/CFS.  Not only do you bare the responsibility of physically caring for your loved one, but you watch the suffering and feel helpless as there are so few resources to turn to for help.

Then there are the spouses and family members who do not stay, who leave under the pressure. Many ME/CFSers suffer alone, without support (physical or financial).  Many become homeless. Sadly, too many become hopeless as they are engulfed in debilitating pain, increasing loss of function (and independence), without medical care. The rate of suicide for people with this disease is twice the national average.

ME/CFS is given just a token of government money for medical research.  Research is the means to finding the cause, the diagnostic tests, the treatment and someday the cure.

You can help those of us whose lives are affected by this illness, by supporting research, supporting those you know who suffer from this disease and just by learning about ME/CFS. You can visit Blue Ribbon Campaign for ME/CFS Awareness for a synopsis of facts about ME/CFS and ways you can help grow awareness.

If you are able and feel inclined…even the smallest of donations towards research can make a big difference. You can visit the CFIDS Association of America (dedicated to CFS) if you would like to make a donation.  Specify that you want your money to go to research.

Thank you for taking the time to read this post.  By doing so, by caring enough, you have already built awareness and hope,   Kerry

 When the world says, “Give up,”
Hope whispers, “Try it one more time.”
~Author Unknown

Hi,  Those of you with ME/CFS, do you find yourself worrying about the impact of exercise intolerance on your health? 

I sure have, but, I am not listening to news reports anymore as to what research studies are finding is the needed amount of exercise to keep one’s heart healthy and to live to a ripe old age.   How discouraging for those of us with exercise intolerance.  Since I can’t get to the gym or walk miles many times a week, does that mean I don’t have many years ahead?   Phooey!  I’m determined that it means no such thing! 

Those of us with exercise intolerance can make our own healthy exercise programs (with the help of our medical practioners) that work within our physical limits and don’t flare us up.  

Then we need to feel darn good about what we CAN do.  As research points out over and over again, feeling good, feeling positive, and having hope are also extremely healthy!!!!!!!!!!!!!!!!!!

Here’s what I’m doing and thinking lately.  Walking up our staircase is a workout.  On high functioning days I try for twice a day.  I walk around the house as much and as often as I’m able. Some days my pace is fast and I walk from room to room straightening up and putting things in there place.  On my toughest days, I need to “take a wing” as my Grandpa used to say, hold on to my hubby’s arm and do a couple laps around our living area.

Wheelchair walks, oh so fun!  I walk behind the wheelchair, pushing it until my bod gives, then I sit down and my hubby gets a work out pushing me.

A new addition these past two weeks is using our treadmill in my own “exercise intolerant” way.  On able days, I set the treadmill to an oh so slow speed and walk two to four minutes at a time.  Some days I can do this once and some days twice or three times (and a good lot of days my bod isn’t up to it).  To feel my circulation quicken feels wonderful.  It clears my brain and I feel an all over physical lift.  If I overdo it though it will flatten me…. so important to talk to our docs and listen to our bods and start out oh so slow.

Yoga!  I love yoga.  I have my teaching certificate which I earned when newly ill and could do much more than I can now.  I wanted to work with others with chronic illness.  I wasn’t able to teach long as my body couldn’t keep up, but I’m grateful to know how to do yoga.  Oh so gentle, mostly laying down or sitting, I have created a routine for myself that I do whenever I can (usually three to four times a week).  Stretching, breathing slowly and deeply, helps me feel grounded and peaceful. I feel in touch and appreciative of my bod and what it is still able to do.  For Fibromyalgia pain yoga is my best medicine. 

Any movement, no matter how slow, how small is better than no movement.  I like feeling good about what I CAN do, and I know that positive feeling is good for my health, my heart and for keeping on a going a long time! 

Have you been able to incorporate movement into your life in spite of exercise intolerance? 

(I want to thank Connie at My Chronic Life for inspiring this post.  I read a blog post of hers today in which she talked about the walking those of us with chronic illness can do and that it counts!)

*As I am not a medical expert any way shape or form, it is IMPORTANT before starting an exercise routine, to talk with your medical team about what exercise is right for you. 

I often organize my closet when I can’t sleep or creep quietly out to the family room to cuddle up on the couch with my laptop (which I’m doing right now). Since having Fibromyalgia/ ME/CFS, sleepless nights are a common part of life as they change the normal cycles of sleep.

Like a mouse I arose from my bed tonight, careful not to awake my sound to sleep hubby. We have a walk in closet that is off of our bathroom rather than our bedroom. I can turn on the closet light and work quietly without waking him. This week I’m in the midst of Spring Cleaning our closet.  I just finished filling a laundry basket with clothes I no longer wear.

Most sleep difficult nights, I’m able to nod off sometime before dusk. When I wake and walk into my closet to dress, I enjoy finding it more organized than when I got into my pjs the night before. I enjoy it most when I forget that I was up working in the night; IT FEELS AS IF  I PURPOSELY SET OUT TO SURPRISE MYSELF.  (Imagine its similar to how the shoemaker must have felt in the “Elf and the Shoemaker” when on rising he finds the shoes he thought he’d toil over the following day, complete and lined up neatly in pairs.)

What do you do when sleep alludes you?