Carnival of MS Bloggers #107

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

New Days with MS

Wake Me Up

by Sarah of Making Calm

The dampness is frightening. But not yet.  It will seep through and make a rain in my bones, i know. A deep murky mixture of water and rubble climbs slowly up the side of the bed.  We are awash on our beds, screaming at swimming  buses swinging round like  boats. But I am asleep. Through closed eyes i watch. They are collecting at a building. At the base of a hundred steps. A building, once magnanimous, now crumbling. They kneel as water fills its cracks and fissures under a dying sun. A stranger comes to lie beside me. Tired perhaps. But i am irritated. I turn over. I am asleep. Let me go, my precarious dream. Of a damp, wet and dying world…. Let me stay. A drunken awareness tugs at my lids. The expected, pain, finds its way in. Shoots through, pinning down my shoulders, and finds its nest in my hip.  I cannot scream anymore. I cannot cry. I am awake. My pupils dilate and contract searching for my will. I dont know how well i will be today. But it is a new day. And it has begun.

daily image: 1/12/12, #779

by Stephen of Captured Light

shot with my new canon s100.

Getting Over the Grief

By Catherine of A Life Coping with MS

There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone. In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone. And I'm starting to understand why.

Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.

So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.

The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times. For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.

On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.

But acceptance doesn't mean that I haven't had days of the other four stages.  In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.

Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?' Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.

It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'

But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?

Ah, and in creeps the denial - without me even realising it.
If only it were true.

The Irony Is ...

by Judy of Peace Be With You

Most people will share
really good or really bad
accounts of their lives.

The daily humdrum
muted play of emotions
does not get much play.

The irony is
we mostly dwell, laugh, and cry
in the commonplace.

The Quest to Reinvent Myself
by TamDe of Shalom Babayit

I was a physical person. Not a rock climbing, landscaping, house renovating, kayaking kind of physical. Rather I was a cookie baking, soup from scratch making, closet organizing,decorating, wallpaper hanging, leaf raking, dog walking kind of physical. I loved the feeling of accomplishment, not so much from "creating", but from "organizing". That was before Ms.

I worked as an optician for over 12 years. It was a career change for me coming from the field of retail. I thought I wanted to "help people". What I discovered was that my favorite part of the job was decorating the frame boards and keeping our desks tidy. I preferred straightening out our work area. Not so much the fabrication of the glasses though. It is a precise skill that uses metal and hard objects to form functional devices. I would rather work with soft fabric and scrunch it to make it fit. While opticians work in millimeters, I would rather measure an ooch or a scowtch. If you sew, you know what I mean! And then, sadly and admittedly, I discovered I was not so much into the "helping people" part of opticianry. The reality is it was more of a my glasses are crooked kind of complaining and whining. Yeah, there were more than a few people who truly appreciated my skills to realign their progressive lenses or reshape their bent frames. I loved the people who gushed appreciation when I simply changed their nosepads. Such a small thing to create huge comfort. But, unfortunately, one "oh shit" would wipe the whole slate clean. The patient who complained her glasses were too big or too small, too blue or too red were the majority of the customers.

I worked in a large office where I could have contact with the MDs and ODs if I wanted to. In general, they tried to project an atmosphere of openness, but for the most part, I felt my questions were irritating them. Oh, not all the docs! Some sincerely appreciated my attempts to help their patients! But again, one oh shit wipes the whole slate clean, and I would become acutely aware that I was cutting into the doctors chair time. Redoes cost money, and it would be a finger pointing battle of who messed up: was the prescription wrong, or were the glasses made wrong? Oh well, such is the responsibilities of every job. No matter where you work or what you do, that is what it means to be accountable.

As MS waged its relentless progression on my body, my left side became weaker. I could no longer adjust or fix glasses. After I fell once, I knew it was time to rethink things. After I fell the second time, my husband became concerned. The true wake up call came one day when the fire alarm sounded. An electrical problem on the 3rd floor of the building caused the alarm to go off. As we all headed outside to a cold winter afternoon, my friend went to get my coat. Others waited while I slowly navigated the stairs. They were worried about me. In reality, this was not good. I knew if it had been a true fullout disaster, they were risking their own safety to assure mine. It was that event that forced me to acknowledge that it was not right for me to continue to work.

It's coming up on one year that I've been home and acquired the dubious distinction of the label disabled. I've spent the year acknowledging the limitations MS has caused. I realize the importance of having a "can do" attitude rather than focusing on what I can't do now. I know I should use this life changing experience to rediscover myself. But I'm not an artist or a writer. I'm not a stargazer or a theologian. I don't have the answer yet to who I am or what I'll do. But I do have plenty of time now to think about it.

In Need Of A Better Disguise

by Karen of Meandering...One moment please

preparing for the day

unsteady hands apply the camouflage for the face

though not deftly placed

obvious ailments are masked

if only the makeup could extend the length of the body

concealing the disabilities

that scream...

she

is

a

sick

person

there is no hiding that

~Karen

This concludes the 107th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 16, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 14, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #106

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Gratitude, Anger, Nostalgia, Freedom, Balance

A Small Stone: Jan 13, 2012

by Laura of Shine the Divine

.שַׁלָ נְעָלֶיך, מֵעַל רַגְלֶיך--כִּי הַמָּקוֹם אֲשֶׁר אַתָּה עוֹמֵד עָלָי, ואַדְמַת קֹדֶש-הוּא

Take off your shoes from your feet, the place your are standing upon is holy.

(Exodus 3:5)

I look down at my two seemingly ordinary feet, veined with time standing firmly on my favorite yoga mat, the sunshine yellow one that has traveled many miles in the past to retreats and teacher trainings, to classes and workshops where I too have had the privilege of being called teacher. This mat rolled like a scroll in the corner of my bedroom, waited ever so patiently for my body to be well enough to return to its sticky, yielding surface. Now unfurled lovingly, naked soles press down, I hear a voice resonating deep within: the place you are standing upon is holy—this is no ordinary moment, it is suffused with healing, pay attention, be present.

For one who has struggled fiercely with standing and walking over these three years since being diagnosed with MS, this place is indeed kadosh, holy. I am grateful.

I'm an Angry Bird

by Karen of My MS Journey (MS stands for Miss Sexy, right?)

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?"  As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself.  It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us.  That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism).  Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed".  MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and  looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there?  Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person.  How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics.  Then I get MAD that they can't tell how ill I feel.

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great.  I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed.  I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag.  I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

Commencement

by Robert of The Gifts of MS

I went outside this afternoon, to enjoy the finally warm Southern California weather. And I'm enjoying the air, and the sunlight, and the smell of the trees... and I look at the bits of Backyard Project that are undone thanks to not my usual lassitude, but to the ravages of The Disease. A workbench I used to use a lot... but don't any more. Potted plants that I used to care for more assiduously, but don't any more. Sometimes because even walking up to them is difficult, sometimes because standing and dealing with them is difficult, sometimes because both are too difficult; sometimes because standing and dealing with them is (maybe) dangerous or (usually) just plain non-doable.

For all of us, there are Things that were once part of our lives, but are no longer. Things whose time has come and gone. Some of those Things, we left behind because we had no choice—we would have hung with them longer, if we could, but that possibility simply didn't exist (for example, the college we left because we at long last graduated from it, and once you do that, you're outta there). Some Things we left behind because their time had come, and we knew it; and depending on our relationship with them, letting them go was bitter yet sweet, or Not! Soon! Enough!!!

And there are the Things that we would have loved to keep a relationship with. But the Things themselves decided that the time was up. Or, in our case, the whatever-it-was that brought The Disease to us decided that it was time for us to travel a different road; a road without those Things.

Now, what is it exactly, that makes the letting go of some of those Things easy, and some difficult? The Buddhists would call it "attachment," but even if that term explains it correctly, it doesn't really speak to the way those Things are hooked into the depths of our being.

I hated my college for the first two years, I loved it with an amazing love the final two years. I hung around for three years after I graduated from the college (two of those years in the master's program). But eventually, even I had to agree that the time had come for Something New. That it was time to let those Things go, beloved as they had been. And really, many of them, the part and parcel of the Undergraduate Experience, were already gone. They had departed when my diploma was signed, and delivered to me on the day of Commencement. And interesting choice of words, that... not an ending, but a beginning.

And here I am, surrounded by Things whose time—for the moment, at least—has come. And I am facing a barrage of "Commencements." In so many ways... even in the once simple tasks of standing up in the backyard, walking across the back yard. The ways I used to do those little Things... those trivial, quotidian, almost unnoticeable because of their simplicity, Things... for now, at least, they're gone.

Somehow, "commencements" were easier to take when you knew they were coming for years. When you worked your ass off to achieve them. I'm sure there are some who might say that I actually did work my ass off to position myself to travel the M.S. Highway (and I don't mean with regard to the huge amount of weight I've lost) in some sort of mystical, non-immunological/neurological way; that I chose these "commencements" for myself; as Marley's ghost told Scrooge, that I forged this chain link by link and girded it on of my own choosing.

So these are among the gifts of M.S.: Commencements. Delivered daily. Sometimes even hourly.

The past is over. Time to begin the new. The past created precisely what is necessary to deal with the present. We couldn't deal with the present if we hadn't lived through the past.

Which means that the greatest gift that M.S. gives us is the ability to deal with the M.S. Highway.

But oh, the past... the wonderful, wonderful past. Was it really that wonderful? I certainly like to think so...

But as a very wise friend once said, there are many paths to enlightenment; but nostalgia is not one of them.

A Small Stone: Jan 14, 2012
by Laura of Shine the Divine

A small stone: A steel-mixing bowl rings cheerfully as a handful of green peppers meet its surface; animal awareness perceives vegetable and mineral interaction as the ethereal sound of a singing bowl infusing the kitchen with good vibrations.

A pocket full of pebbles: This weekend we celebrate the remarkable devotion and sacrifice of Dr. Martin Luther King Jr. and the many brave souls who also risked and gave their lives rallying around him. This Shabbat, we begin the book of Shemot, Exodus; an ancient journey to freedom that replays over and over again throughout time for nations, for individuals unfolding in unique ways. For me, freedom is not so heroic, but significant nonetheless for my beloveds and me.

Freedom tastes like vegetarian chili simmering on the stove. Vegetables chopped with my two hands, peppers, tomatoes, onions, garlic, cilantro, beans rinsed, cumin and cocoa sprinkled, lime squeezed--slowly...oh so slowly, not only because it is the speed at which I am able to attend to my work, but because this is how I know I am alive, this is how I honor the preciousness of the gift it is as a mother, strength and endurance improving, to prepare a meal for my family. A task that I’ve not been able to do completely from start to finish while standing and all at once without resting in between for four years. Freedom tastes like gratitude. Freedom tastes like love.

Un-tethered...this is the sensation I am experiencing. Released from my computer, my primary connection to the world beyond my windows and backyard for nearly four years. Freedom, I taste freedom as I putter about the house. Each day I MOVE away from the keyboard and 11inch screen to discover, recover, remember what I lived before, what it is to be a human doing, not just a human being. It is the reverse of what many long for, so many people tired of going, going, doing, doing, tied tight to the world beyond windows, yet for me this is a deep, deep blessing.  The key will be to find the balance between the two—being while doing. I’m only human after all.

I am not the way I was, will likely never completely regain what has been lost, unless someday a brilliant scientist or team learns how to regenerate damaged myelin, still, I am grateful for the strength that has been renewed at this time and continues to increase daily.  Baruch HaEchad. Blessed is the One.

“All progress is precarious, and the solution of one problem brings us face to face with another problem.” ~Dr. Martin Luther King, Jr.

And my thoughts return to balance. I miss being online, visiting my blogging friends who have become so dear to me. I must find a creative solution to balance my time on and offline; a tiny problem as problems go, no comparison to the challenges Dr. King was referring to, but still one I must face. These friendships are real and I do not want to cause more isolation in my life, forget about the kindness and support I have experienced from so many beautiful souls around the world. I don’t want YOU to feel that I have forgotten you or that I don’t care about your wellbeing, because I haven’t and I do. Where there is love, there is always a way…I will find it or it will find me, I have complete faith that this is true.

Well this pocket full of pebbles has grown into a cairn, fitting really, marking great achievements and small, gratitude, friendship, blessings and love.


This concludes the 106th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 2, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 31, 2012.

Thank you.

Comments for this post.