LEMON-AIDE

*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.

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

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

Parents with ME/CFS, MCS and/or Lyme, I’m writing a post/article for Awareness Month (May) about how having a parent with these often misunderstood illnesses has an impact on our children. If you or your child (young, grown-up or in between) would like to participate by sharing your thoughts and experiences, leave a comment telling me so and I will email you a questionnaire asap.

Feel free to ask questions through “comments” or email me at Kerryon25@msn.com. You can also read my previous post for more details.  Thank you much to those who are already participating,  Kerry

Before I get to escalators and elevators, here’s a big stretching hug around all of you for your caring and support. Its a wonderful feeling and a comfort when you’re going through tough stuff, to log into your blog and find your friends have stopped by to let you know they care.  You affirm my feelings and have helped me to feel safe sharing all the colors on the colorwheel.  So, now in that safety and comfort I want to share some fun stuff from yesterday afternoon (orange!).

I was able to go with my daughter to exchange her prom dress for one that fit.  Joy!  As you all know, excursions, as such, become equal to a day spent at Disneyland or Disneyworld when we were kids.  My daughter and I ended up having a couple laughter opportunities that made it all the better.  I want to share one of them, in case it makes you smile and because remembering it makes me giggle.

As you guys all know by now I have chemical sensitivities severely and the mall is like walking into a toxic chemical cloud.  We have to be quite strategic as to how we navigate through it, in order to avoid the places that have been doused with the most perfume and cologne.  My daughter and I picked an enterance of less toxicity, but without an elevator nearby. (I use a walker so normally we use elevators).

I had this brilliant idea that we could carry the walker up the escalator.  I held my daughter’s Starbuck’s cup in my right hand, the hand that works well.  She grabbed on to the front of my walker, thinking I’d grab on to the back.  I couldn’t because my left arm and hand with their neurological struggles couldn’t grab the walker and my right hand holding the coffee couldn’t grab the railing of the escalator.  The walker rolled backwards into me.  I watched my daughter try to run down the escalator stairs to “save me”.  This didn’t work (if anyone has tried this, you know why), so she rode up the escalator and down the other side, while I moved myself and my walker to let other shoppers, who were wondering what the heck we were doing, on to the escalator.

We devised a smarter plan.  This time she folded up my walker and carried the cumbersome thing herself.  I held her Starbucks cup (ceramic or we would have thrown it out) with my left side and used my right arm and hand to hold on to the railing.  We made it, and had a lot of fun laughing at ourselves on the way to the dress section.  I think we should take escalators over elevators more often.

Its Friday.  (I’m definitely out of the “time warp” as I know what day it is today).  I’m still shaky following my test results.  I appreciate that I can write that without self-judgment.  Life is shaky…right now we are on a rotating planet which is circling a star which is burning hydrogen into helium (did I get that right?)  The chances of being born are astronomically slim…being here is a “wow”.  Are you wondering how that relates to anything?  I’m not certain, but somehow in this brain of mine, it connects, and reminds me to take myself and life a whole lot less seriously.

Here’s to the simple joys and the little things that go a muck and make us laugh. Wishing you a weekend of being able to do something or a few things or maybe even many things that make you smile.

….and Happy Birthday Mom!

Oh joy…my legs are shaved!  I find shaving my legs to be one of the most grueling, energy exerting activities since having ME/CFS.  One of the best things about winter is not having to shave my legs because I can hide my hairy legs under my long pants, sweats or pj bottoms.

There comes a time though when my tolerance for the oh so unattractive hair on my legs reaches its limit…and so it did today.  This also came about from my working on new ways of doing things in order to help my function rise.  Shaving legs does not require cognitive exertion (aside from remembering which leg I’ve already shaved).  I’m also working on making myself a greater priority and my legs, being a part of myself, fit the plan.

To shave my legs, I have to take a “keep my blood pressure up” medication….and I have to accept imperfection, which means making peace with missing a spot here and there.  But, I did it; my legs are smooth and I even put lotion on them afterwards.  I’m celebrating… laying down, exhausted… but celebrating!

Okay you guys with ME/CFS, FMS, MCS, Gastroparesis and other energy zapping illnesses…do you find shaving your legs a major feat too?  Any energy saving tips?

PS!  I just realized how sexist this post is.  Guys, I know the shaving your legs doesn’t apply to you, but I bet shaving your face each morning can be impossible when you have no energy. Maybe you’ve grown a beard or gotten comfortable with the “scruffy” look?  Love to hear from you and the plight of face shaving.

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.

It is now evening in this hotel room.  My family is out to dinner.  I was able to join them at the student union section of campus this afternoon to listen to some awesome music, but quickly had to return to the hotel due to the effects of an overload of perfumes, colognes, hair spray, dryer sheets, cigarette smoke and a merchant stand full of pretty to look at, but full of perfume, candles.  All of the above filled the crowd surrounding the musicians.  My hubby and I kept rollin my walker around to find a “chemical free” or “chemically lite” spot, with no luck.

My left side stops when I am exposed to more chemicals than my body can tolerate–literally I can no longer pick up my left foot or coordinate my left side. The left side of my mouth droops.  It is not a pretty state to be in, especially in public. So again I am here in this destination location…this hotel room, with less toxic chemicals than most, but still with more than this chemically sensitive bod that is already topped off with toxins…can handle.

Though I make peace with the reality of the difficulties in traveling with CFS, particularly the severe MCS that accompanies the disease for many of us (see previous post, written this morning), sometimes like tonight, the peace is more evasive.  Perhaps peace struggles with the neuro-toxins in the chemicals too.

I get to know hotel rooms.  I do not breeze in out of them to sleep and shower and get to the business of travel… instead I stay.  For me the room is my destination. This morning I sit on a cozy, wide, worn chair, my feet on an ottoman.  I sit and look up and out the sliding glass door to a still river below.  The sun is shining…what a pleasant reprieve from the sunless days of home.

We are staying at a lovely hotel thanks to the grace of a friend who works here and helped us to afford it. The room is wide, so that at the end of the two queen size beds, there is space for me to lay out a sheet I brought from home, on which I do my oh so gentle yoga.  I stretch in small batches…rest, do something else, stretch again.

There is a slight presence of chemicals in the air, perhaps Febreeze.  We kept the window open a good lot of the night and though I feel some irritation to my nerves, sinuses, lungs etc, it is mild. I am grateful as compared to most hotel rooms, this one is practically “toxic chemical free”.  Our friend put a personal note into house keeping to refrain from using harsh chemicals to clean our room with.  I appreciate that much.  Quite a few times over the years, we have had to change hotels as the potent chemicals rendered me unable to move or breathe.

My thoughts travel to my family..to what they are here to do and how it is going.  I wish I was with my daughter right now, touring the campus.  I wish I could join in on the “normal” of parenting our children into new life stages.  I know my kids are blessed to have a daddy who can.  I need to remember to be grateful that I am here with ears that work and that can listen, afterwards, to the tales of their adventures.

This room feels cozy. The bedspreads are sage green, murky green, like the color of the river…a pattern of off white leaves spreads across the fabric.  They are not shiny and polyester bedspreads as most hotel rooms use, instead they are cotton and soothing to the touch.  The carpet is good ole’ indoor -outdoor in a not so natural green, speckled with subtle rust colored zigzag lines. The wall paper is subtle; subtle to where you don’t know its wallpaper unless you spend hours in the room and notice. It is striped vertically with white and off white stripes.  The gold framed art is of old train bridges, white train bridges.

I like that the placement of bathroom. as it is tucked around the corner from where I sit.  and I can’t see it from here.  My medicine bottles had an accident last night.  I take Mestinon for Myasthenia Gravis.  I take it in liquid form and learned that pouring out a dose in a moving truck is not smart.  The sticky liquid spilled over the rest of my pill bottles.  They are standing by the sink waiting for a shower…for now, I can tuck that little chore away.

I brought my laptop and my novel (Stephen Kings’s The Dome, which I am reading slowly as it is a heavy hard back book; too heavy for weak muscles.  It needs to be propped up for reading.  I asked for it for Christmas…I know now to wait to ask for the books I want to read to come out in paperback.)

Being alone in a hotel…waiting…knowing that those I love are taking in part in activities that grow their lives…has become a bit spiritual.  The stacks of laundry and bills at home are out of mind (or were until I just wrote about them).  It is just me in a room, a room with a new view.

After I visit my feelings of “left outness” and “why do I have this lousy illness that makes it so I can’t get out of here”, I surrender…I do.  I find peace with it.  For years this is my pattern, frustration, “why me?” and then “its okay.”  The quiet begins to sound soothing and I begin to settle into my own company.  I remember that I can be a rather nice person to hang out with.  Time will pass, the hotel door will open and I will hear what happened out in the world of my loves and in so doing become a part of their experiences in the way that I can.

I didn’t bring my poetry books with me this trip, but there is a line from a famous poem that keeps coming to me “with a heart for any fate”.  I can not come up with the name of the author.  When I get home, I will credit him and the anthology the poem is a part of.  For now, these words soothe me, affirm the intimate relationship I develop with my hotel room surroundings.

This fate is mine…mine to live, mine to find the beauty in and sometimes to feel the “this is too much” of.  It is my fate…and in the quiet that it demands, I am able to hear the rhythm of my heart…the sweet little songs of the birds perched on the tips of the boughs of the trees flanking the river…and of course the ongoing “ommmm…” of the heater/ac unit.

Yeah,  today I’m getting my haircut.   What a challenge it has been to keep my hair looking decent and not dowdy since I’ve become challenged with ME/CFS, MCS and a related Neuromuscular condition. 

Multiple Chemical Sensitivity and hair salons do not mix.  MCS emerged with ME/CFS  (It often is a part of the illness for many of us).  My MCS has progressed since its onset a dozen years ago, and now is quite severe.  Since the products used in hair salons (which now include nail salons) are filled with toxic chemicals I have to some heavy duty investigating (with the help of my hubby) to find a salon that doesn’t cause me to hit the ground when I walk in.  My husband has to check out the salon first to make sure I won’t be exposed to nail product fumes.  Then, I have to call the salon and ask for a stylist who does not use perfume or heavily scented products.  Still the chemicals of the hair dyes, sprays, etc. are unavoidable so I have to take some medication to help me through the haircut, and do some physical recouping afterwards.  I do not get my hair colored as I absolutely tolerate can’t tolerate the fumes.  I am trying my best to celebrate my incoming grey hair (hey, they have a wave to them.  After a life time of straight hair, that’s kinda fun right?)

Since I have a Neuromuscular condition sitting up in the straight back chair is hard for me.  I bring pillows to prop up my arms and work with a stylist kind enough to put up with my slouching in the chair as much as possible.

I often have to cancel appointments due to ME/CFS…some days I am just too sick to get there.  How grateful I am for the salon that I have been going to the past few years…they cancel and reschedule my appointments cheerfully, even if I have to cancel just hours beforehand.

Okay, off to start the process of getting ready for my appointment…showering, getting dressed, eating breakfast, collecting my purse, water bottles, pillows and husband to drive me.  Hair cut day is quite an excursion that demands for those of us with ME/CFS much exertion.   But, what a good feeling it is when my hair is cut and styled…perks up my spirits.

Those of you with ME/CFs and other illnesses that make it difficult to keep your hair looking perty…how do you do it?

 “Brighton author describes life in a “chemical free cave”"  Author Franny Armstrong (author of six romance novels) who is “shut-in” with Multiple Chemical Sensitivity, describes the illness and the reality of living with MCS.  She writes with such clarity, that the reader can’t help but better understand MCS and how it severely alters one’s life and binds a being to one’s home (or cave as Franny Armstrong calls it).

Thank you Susie (editor of the ”The Canary Report“) for sharing Franny’s article!

These past couple weeks my MCS has got me “fuming”, pun intended!  I posted about our poor cat who came home in a “toxic” cloud and is still ”shut-out” of the house in spite of many safe shampooings and a dip in our pool.

Yesterday we had parts of our backyard fence painted and stupidly did not think that the finish would be strong enough to seep inside the house (we have a very big backyard).  Oh mi gosh the house might as well have no walls! The air is full of the finish and my poor body, already overdosed by last weeks chemical onslaught is struggling with breathing and working correctly neurologically.  My hubby and daughter are a bit “shut-in” too as we are keeping the windows closed until the fence finish dries and the air clears. 

There is a silverlining.  We are having our house painted soon and it will take three weeks.  This is a warning that we have to use VOC free paint, or I will have to move out for three weeks.  Where does someone with MCS move out to that is chemically safe?  Unless we have amazing relatives or friends who keep their home as toxin free as possible I have no idea.  Suggestions?  Also taking suggestions for safe, quality paint for the exterior of a house.

I am confined to our upstairs and our cat has been locked out of the house. She had her fur combed out at the vet yesterday and came home smelling like a chemical plant (they washed her in the shampoo they use on “big stinky dogs” we learned.) For someone with MCS this is not only unpleasant to the senses, but dangerous (and I can’t imagine pleasant or healthy for our feline either).

Our chemical air filter is blasting downstairs and hopefully in a few hours the air will be clean enough for me to get back downstairs, and finally out of my pjs. It will take a little longer for my neuro system and lungs to recover, and for my hubby and daughter who have been taxiing the cat back and forth, trying to clean the air, hiking the stairs to bring me what I need… and for my hubby to regain the sleep he missed last night while taking care of his neurologically struck wife.

Another adventure to add to the list for a family with a member with MCS (a “canary in the coal mine”).