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?
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
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?
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”).
Comedian Bonnie Hunt started her talk show Friday by sharing that she was handed a cup of coffee at a coffee shop that morning that tasted like perfume (the woman who made the drink was drenched in it). She then talked about how many people are sensitive to perfume. Bonnie followed this by talking about dryer sheet “exhaust”; how her dog hacks and coughs when she walks him by houses that are emitting it (through their dryer vents). Bonnie got out the word to her audience that perfumes, fabric softener and dryer sheets are affecting people and using her sense of humor, she encouraged people to tone down their use.
I cheered out loud after she spoke out about chemical sensitivities. To hear a much loved and respected celebrity, with a wide audience, speak out on this subject that affects so many of our lives everyday, gives me hope. Awareness brings action. I can see some day in the not so far off future, the toxic chemicals in so many everyday products and their affects on health, becoming common knowledge. I can see more and more safe products being made without toxins and an educated public choosing to buy and use them.
Bonnie haven spoken out gives me hope that those of us with Multiple Chemical Sensitivities, Migraines, Neurological and/or Respiratory conditions worsened by toxic chemical exposure, can walk out into public places and invite people into our homes without becoming ill from the toxins in the products people are wearing.
Thank you Bonnie for spreading awareness of chemical sensitivities to the millions of people who watch your show.
I don’t mean the hazard of not having enough money in one’s account to cover the payments. For those of us with chemical sensitivities an added hazard is “scented” bills, the one’s that when you open the envelope a wiff or the latest perfume or cologne rises up to greet you. The scent is meant to be a good marketing tool for the perfume and the store selling it, but for those of us with Multiple Chemical Sensitivities opening our “scented” bills literally makes us sick.
After I became ill with Fibromyalgia and Chronic Fatigue Syndrome, exposure to perfumes, colognes, dryer sheets and fabric softeners triggered asthma attacks, migraines and a severe feeling of cognitive blurring and physical slowing. As my illness progressed, so did the severity of my body’s response to these chemicals. I now experience debilitating neurological symptoms. The above mentioned products are unregulated by the FDA. They contain Neurotoxins as well as Carcinogens.
This morning I paid our bills, starting with the safe, unscented online payments- no problem there. The ”off-line” Macy’s bill was next- the dreaded Macy’s bill! (Dreaded in spite of the small balance remaining on it.)
My hubby opened it soon after it arrived. He threw away the perfumed insert and sealed the rest in a baggy, thinking it would subdue and contain the scent until it was time to pay. When I opened the baggy the invisible yet stubborn perfume escaped. My brain went woozy. The left side of my face and my left arm became numb. My lungs tightened and burned. I coughed through writing the check as I tried to focus my blurry mind on writing it for the correct amount.
I wrote the check for the remaining balance, determined to not have another scented Macy’s bill enter our home again. I opened the window, then took a nap in order to air both the room and my system out. As I was falling asleep, I thought of all the people with MCS, Asthma and other Lung Conditions, and Neurological Diseases, who will unsuspectingly open an envelope and have their symptoms triggered, some will have an asthma attack, some a migraine, some even a seizure.
It’s time to start writing letters I thought as I drifted off. I need to start with writing Macy’s billing department. Companies that scent their bills need to know that they are endangering their customers–those of us “Canaries” who are immediately effected as well as healthy customers whose body’s may someday be effected by exposure to neurotoxins and carcinogens. One letter at a time…perhaps together we can get the perfume out of bills…and ultimately FDA regulation of the perfume industry.
*For more information on Multiple Chemical Sensitivity visit The Canary Report .
