|Two Bunch Palms, Desert Hot Springs|
After spending time with my clueless family about MS, seems a good time to repost these great resources on how to explain MS to family, children and friends. One would think that 13 years with the disease would teach them something. But not really. Everyone just seems to live in their own worlds. Me too I guess. Guilty as charged.
My MS has caused extreme sensitivity to sound/noise and other stimulators, like light, television, etc., and considering I live in a house where someone who can't hear refuses to get a hearing aid, well imagine the TV at volume 78 all day long!
But for MS and this last weekend, man what a pain! Literally. I was invited by my family to meet for breakfast. At the loudest sports bar ever. During football playoffs. The sound was so deafening that my MS went bonkers. Hands started shaking. Head shaking. Thought I wasn't going to be able to eat. 36 TVs in my line of sight. I had to find something simple to look at. The table. There was one spot on the table that was quiet. After dropping my fork several times I just sort of gave up. Making earplugs out of my napkin helped. But sensory overload has been one of my greatest MS challenges since 2001. That's a long time for family and friends to ignore or be ignorant about.
What hurt the most is my family's utter disregard for my health concerns. They would never take an alcoholic to a casino but they know nothing about my MS and that is the saddest news ever. I've cried almost every morning since the new year. Not my usual way to approach life. But when folks don't get it. When friends and family don't get it. Well it hurts bad.
We need more awareness for MS!
Information about MS has grown significantly since being diagnosed with MS. Much research and alternative thinking has created many new resources online to draw material from. Some resources are very clinical while others are personal musings, both of which are invaluable for a random disease like MS.
Between search engines, Facebook and twitter feeds dedicated to MS, the information is excitingly overwhelming. Never have I seen so much variety in researching this disease.
One of my favorite Ms organizations is located across the pond:
Multiple Sclerosis Trust
Follow on twitter: @MSTrust
Check out these great resources for families and friends of this with MS!
Way to go MSTrust!
Started off with several big glass of water, morning decaf coffee, reading and ipad time.
Picked up a few of my favorite reads. Morning excerpts sound good.
Kent Haruf, Pam Houston and Jim Harrison. Just a smidge of their work and my library.
Since the broken toe is still bothering me I went for some bathtub yoga. Put on some music, light some candles, take a nice shower, wash my hair, scrub the body, etc. Once cleansed I let the water fill the tub, sometimes adding sea salts or herbal bath salts.
I grew up with a shower/tub and a father who knew the importance of a four minute shower. For over forty years we lived on septic tanks and through many droughts. Water is the most underrated asset in Los Angeles. This bath time is quite an extravagance for which I am very appreciative.
The Water Wars of California, a very important story, is unfortunately lost on many residents in our beautiful desert oasis. Do you remember the film, Chinatown? Or the more recent, animated movie, Rango? Check them out for sure! The Los Angeles Aqueduct (photo from Wikipedia) is the cause of much consternation.
Out of respect for water, I use hair products hand made by Daryl GlinnTanner at Divine Response. You can practically eat these products they are so natural. Since we were on septic tanks for many years and as an outdoor enthusiast, I appreciate that all of her products are grey-water friendly. The scents are refreshing but can also have scent free which is nice too.
Taking opportunity of all things bath: loofah, soap, pumice stone, nail brush, I am aware of my stretching and movement.
Everything is done with intention.Today I used loofah gloves and one of my favorite soaps which Santa delivered in my stocking, l'Occitane's Almonde exfoliating soap. It's gentle but great for getting rid of that winter coat!
The images below show more than I can do in the tub but I don't stop when I get out of the water. (I got this image from Fontbros.com. They have all sorts of interesting fonts.)
I stretch in yoga type positions and rub lotion on, all with intention. Feeling each nerve and muscle. Rubbing and massaging. Becoming increasingly aware of how my body feels, sinking slower into each movement.
While I am not actually doing yoga, I'm using this time to center myself and to get the body flowing in a gentle way. Tubs aren't large but just simple fold over stretches help a lot. It's the awareness and intention that is most important to acknowledge. Spend time with your body. How is it physically? Mentally? How is the MS? All things to consider while waking up the mind, body and soul.
From this point I can do anything. Its a me day! Garden? Sure! Let's dry some herbs with this cool gift from my sister-in-law and Overstock.com.
I stopped following the instructions after stage 2 but loved the experience. Just to lose yourself in the day with the delicacy of the brush, the water, the paper and the paints. It's all about controlling the water. As I said, lots to learn.
Time with sunflowers and paints done for the day. Yet so much daytime left! Love these days. And love the connection of water throughout the day. From water conservancy and awareness in the shower to managing water with paints. Wonder what other water relations I will stumble upon?
And then, if the day couldn't get any better, a great friend called and invited me to road trip in Colorado. This will be my MSontheRoad adventure for April. Wahoo! This means spring fly fishing in Boulder or somewhere. Ah, the water source. Here we go! All things water...