Me and my MS: Why I love the water and swimming

“Nothing is softer or more flexible than water, yet nothing can resist it.” ~ Lao Tzu

Carolyne coming up from the depths!

Carolyne coming up from the depths!

Water. H2O. Is there anything more beautiful and potentially terrifying at the same time?? The power of water (as can be seen in the floods we have seen here in Canada this year) is awe-inspiring. It can bring peace. It can destroy. It is a basic necessity of life.

In the summer, people often head to swimming pools, lakes, ocean beaches, rivers, kiddy pools, sprinklers…anything to be in or near water. We do this primarily to stay cool and get away from heat – MS or no MS. With excess heat, often comes irritability and  health distress of some form. With excess heat, those of us with MS often see flare ups of symptoms and severely increased fatigue levels – none of which is good.

Thank goodness for my ability to get in the water and swim, and feel comfortable, and feel cool. Whether I am upside down spinning in some wild synchronized swimming figure, or swimming flat out, or just floating…I am comfortably at peace with my environment.

In the water is the only place I feel no pain. When I am in the water, I feel like I am home.

When I say I feel no pain, I mean that gravity is no longer a factor in my pain. The movement in the water also helps take away the deep burning pain I chronically deal with in my legs.  Daily movement is what helps keep that pain manageable – but swimming helps give me a nearly complete break from it. (That is an emotional and mental bonus, in my books.) But in order to gain that benefit of feeling pain-free, I do have to push myself to feel the “pain” of hard exercise. I have to push my body to gain good cardio benefits and strength – and  that comes with the pain of the exertion, as in “No pain, no gain”.

I have been swimming again with my local Masters swim team…and marveling at the effects it has on me. While Synchro develops strength, grace, agility, and breath control, swim team develops more on the cardio and endurance levels. Gasp!!! The two combined, along with yoga, keep me physically balanced and increase my ability to manage pain. But I still sometimes overdo it – and I learn from it each time.

When one has MS, they have to learn to find the balance between “just enough” and “too much”, or risk the backlash of MS symptoms. I usually only know when I have pushed too much after the fact – such as when I end up deeply exhausted, in terrible burning pain,  and foggy brained for 2 days after a particularly hard training session. (That’s when gentle yoga and resting meditation is really critical!) Hindsight is always 20-20 though, eh? Finding that sweet spot between “just enough” and “too much” takes work – and often with MS, finding that sweet spot is never ending, because MS symtoms can flare and change so unpredictably. Do it anyway!

MS Whammy: The Raw Emotional Impact

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. ~ Reinhold Niebuhr

Well, I have been “off-line” for a few weeks, you may have noticed. Why? A bunch of things…but suffice it to say the bottom line was because of an MS back-handed WHAMMY!

In recent weeks I have been trying somewhat unsuccessfully to juggle my health management needs, family needs, and work-related needs. As is my wont, I pushed myself much to hard to meet a deadline at work for a high-profile opportunity (which was successful, by the way). At the same time I was dealing with a teenager’s confused and volatile life-searching angst which had direct repercussions on how I manage my household, and dealing with a new “complication” related to my MS. All this combined to bring me down to a state of total disengagement and “cocooning”. I was bone tired. I was at a level of raw emotional pain that literally had me keening in the fetal position in my shower almost daily. Basically – I needed to check out for a bit – from work, from tech, from everything…and simply rest. Rest, rest, rest.

Have I ever mentioned that it is hard for me to “slow down” and actually rest, despite a chronic illness that requires it?

With all the stuff going on, my self-identity took a direct hit, leaving me wondering what my life would be like without MS & seizures. Would major decisions have been different had I never had that seizure that forced my car accident all those years ago? Would my family have been better cared for if I had died in the accident? Did I do enough for them despite my MS? What is my life purpose? Why can’t I stop crying? Who am I? I felt angry as hell at my health situation – angry that maybe it was a main reason behind the teenage angst I was seeing.

What was all this? Grief.

You see, grief that is associated with living with a chronic illness can back-hand you at the most surprising times, and in any of its various stages. The past month I was feeling deep grief and anger and depression – triggered by a decision made by a family member. That in turn made me more ill with a flare of MS symptoms and more despondent, especially since I was already at a low ebb due to giving everything I had to teaching a professional workshop.

I am crawling out from under my rock now. But these past few weeks have served as a strong reminder to me that the grief of living with a chronic illness such as MS sometimes lies much closer to the surface than I am willing to admit.

But it also shows me that there is always a light shining somewhere when that rock is moved away.

“Life is a song – sing it. Life is a game – play it. Life is a challenge – meet it. Life is a dream – realize it. Life is a sacrifice – offer it. Life is love – enjoy it.” ~ Sai Baba

Be gentle with yourself. Namaste.

Carolyne

What is the End of the World, anyway?

“Sometimes the questions are complicated and the answers are simple.”~ Dr. Seuss

Image Source:www.timeanddate.com/calendar/maya-world-end.html

Image Source:www.timeanddate.com/calendar/maya-world-end.html

So – what is the end of the world, anyway? What does the end of the world as we know it mean?

These questions have been flying around as the legendary end of the Mayan long-count calendar approaches, which falls (according to north american “experts”) on December 21, 2012.

Personally, I think the end of the world has come and gone many times over, and will come and go many times over in the future. I believe it is also highly personal. And I believe what can be the end of the world as we know can mean a brand new beginning and a new world to discover.

Just looking at this 2012 year exemplifies that for me.

A friend lost her child when a pre-natal check-up showed no heart beat – the world as she new it ended that day. Couples divorced, fighting bitter battles over child custody or money – the children’s worlds ended as they knew it. Someone gets officially diagnosed with a chronic illness like MS – the world ended as they knew it that day. A maniac kills innocent children and adults for some unknown and whacked-out reason – the world as the families of the victims ended as they know it that day. Militants, rebels, and corrupt governments fight endlessly, killing civilians and military personnel – the world as they and the people around them know it ended, repeatedly.

On the other side of the coin, there is a new beginning. But that new beginning is not necessarily always easy or painless. The person diagnosed with a disease starts a support group and sees a new beginning and a new life managing and coping. The results of the maniacal killing spree of a whacko spurs a new beginning for better and safer gun laws and restrictions. I married my best friend, lover, hero, and the most wonderful man I have ever met; that day the end of the word as I knew it occurred – and a brand knew world began for me.

As human being, we seem to always search for the “end of the world” somewhere. Do we really need to look for the end of the world in things we cannot control, big or small? I say “Stop”. Look a little bit closer to home…and appreciate what you have around you. Appreciate the little endings, the little beginnings – the world around you. Don’t try to control what you simply cannot. Don’t panic about things that have no basis in truth.

The world changes every single day. Be grateful for the world as YOU know it.

“In three words I can sum up everything I’ve learned about life: it goes on.” ― Robert Frost

(See you on the other side of the End of the World. ;)

Namaste

Carolyne

On My Mat: Life’s Journey is Not about a River in Egypt

Tell a man there are 300 billion stars in the universe and he’ll believe you.  Tell him a bench has wet paint on it and he’ll have to touch it to be sure.  ~Murphy’s Law

I have traveled the river of denial (get it..de-Nile…ok, bad joke) a few times on my journey through life. One of the reasons that I love this artwork above (not only because it is a beautiful work of art from my son’s lovely girlfriend of which you can see more at http://www.facebook.com/caitsart ) but because of the emotions and awareness that it evokes in me. I love, love, love this piece of simple evocative art.

When I look at this picture, I see myself. I see my friends. I see my family. I see the strangers around me. What do I see? I see the highly personal and individual struggle we all travel on our own life journeys. Sometimes that struggle can cause us to deny what we see in front of us, hide our faces…and peek out between our fingers only when we think it is safe again.

As I was lying in the bliss of savasana one day on my mat, happy to have realigned my body, and I began noting thoughts about denial and what it means. I, for one, can be really good at denial – though as I have aged (and theoretically gained vast amounts of wisdom) I have learned that facing the scary parts full on is really the best way I have found to handle anything. Denial usually comes as a result of fear – and our own unwillingness to face that fear. Hence – we develop our own states of denial. (It’s kinda like putting your hands over your eyes when you don’t want to see something, or your hands over your ears if you don’t want to hear something.)

Here is an excerpt from Dr. Sanity about denial and what it is (Dr.Sanity Blogspot):

Denial may be conceptualized as an attempt to reject unacceptable feelings, needs, thoughts, wishes–or even a painful external reality that alters the perception of ourselves. This psychological defense mechanism protects us temporarily from:
-Knowledge (things we don’t want to know)
-Insight or awareness that threatens our self-esteem; or our mental or physical health; or our security (things we don’t want to think about)
-Unacceptable feelings (things we don’t want to feel)

I have learned over time that the moment I recognise that I feel fear (of anything) is the very moment that I have to take the hands off my eyes, turn around, and face that fear head on. If I don’t, then all I am doing is denying the existence of my fear, and of the source of that fear.

When it comes to dealing with a chronic illness, this applies too. For some of us, our chronic illnesses can be a constant source of fear and denial. How many of us deny symptoms; hope symptoms will go away on their own; just take the doc’s word at face value – with no questioning? I know I did, and sometimes still do! (I often call it pure stubborn-ness – but really, it can often boil down to simple denial…ok, I am facing that. :)

“Facts sometimes have a strange and bizarre power that makes their inherent truth seem unbelievable.” ~ Werner Herzog

Namaste

Carolyne

On My Mat: Seeing The Bittersweetness of Change and Transition

Human beings must have action; and they will make it if they cannot find it. ~ Albert Einstein

Change. It is the one true constant in our world, isn’t it?  However, dealing with change requires transitioning – and that often takes determined effort.  Sometimes people think: “well, transition is just another name for change. Right?” Wrong.

Change is fast. Transition is slow. Change can be forced on us. Transition is the key to accepting that change – and it takes different amounts of time for different individuals.

Whether we are healthy, or have a chronic illness to manage, change and transition are a part of living in this world. How comfortable we are with change, how resilient we can be, usually determines how we transition through that change.

Recently, I have been dealing with a fair amount of change…and I have been taking the time to truly feel the bittersweetness of it as I transition into a new way of being. I have been using my time on the mat to really feel what’s going on within me. Change can be small – like a new symptom that makes a slight modification to daily routines necessary. (Spontaneous tears for me recently is an example – irritating for me, but amusing for friends and family.) Or, change can be huge, and affect you inner core to a large and evening surprising degree. For example: My children are transitioning through from adolescence to young adulthood – so I have myself been dealing with my own transition from “Mommy” to “Mom”, from being the centre of their world, to not being the centre of their world anymore. Bittersweet. The bitter part comes from knowing I must let them fly free – that it is the natural way of things. The sweet part comes from knowing that I have done a good job as a mother – because these kids are eager to fly and take on the world in their new adventures. This allows me more time to focus on me – because my identity is changing.

You’d think that would be easy, eh? I can remember many a time over the years when my kids were young that I lamented “Oh, to just have some time to myself!” Now – I have more time on my hands. But my identity as a mother is challenged – I must transition from Mommy to Mom, flying by the seat of my pants as I do so. But isn’t that exacly what parenthood is all about? Flying by the seat of your pants as you try to raise these little beings in your care. Throw in a chronic illness, and periodic emotional lability due to either the illness or the meds for that illness…well, it leads to some pretty memorable moments!

So how do you not fill that free time to excess work or “busy-ness”, and make sure the transition does not negatively impact your health? My remedy? YOGA! I say: take action – do yoga and meditate (whether a walking meditation, relaxing meditation – whatever floats your boat!!)

Yoga can give us the strength and insight we need to navigate change in our lives. Your yoga practice can serve you well during times of change, big or small.  Yoga won’t necessarily keep you from feeling scared, overwhelmed, or confused. But it can help you sort out your feelings, letting you see  what’s happening from a position of non-attachment to guide you through those feelings so that you don’t get lost in them.

Here are some of the key things to keep in mind when dealing with change:

  • Recognize that change is an inevitable part of life. Change is the only constant!
  • Try to see change as an opportunity – an opportunity to try a new way of living. Or maybe open doors to new people. Or maybe just an opportunity to get to know yourself better, and develop your self awareness.
  • Attitude matters!!!
  • Take action of some sort – baby step by baby step. It might be something as simple as taking that first step into a yoga studio, or cracking that new cookbook to begin learning to cook. Have the courage to take that first step.
  • Be willing to let go. If you keep looking back and keep hanging on with a tight grip, you’ll never actually move forward. Stop thinking in “if only’s” – they keep you anchored in the past and keep you from moving forward. Being willing to let go—moment by moment—can by itself be the inner key to navigating change.

When we least expect it, life sets us a challenge to test our
courage and willingness to change; at such a moment, there is no
point in pretending that nothing has happened or in saying that we
are not yet ready. ― Paulo Coelho, The Devil and Miss Prym

Namaste.

Carolyne

Back in the Saddle: Keeping Life Balance Despite the Challenges

“Never too old, never too bad, never too late, never too sick to start from scratch once again.” -Bikram Choudhury

Sometimes, the stresses of life can throw you off balance in unexpected ways! I myself have been “off my game” for the past few weeks, basically suffering from “home-office-presenteeism-itis”. What does THAT mean? It means that sometimes the stresses associated with working at home (as per my health accommodations) can take up residence in the sanctuary of my home and continue the stress that normally I would LEAVE at work. That is the tricky part of working at home as a way to accommodate your health – figuring out how to keep them separate, while still being passionate about your hobbies and other life-balance tools. And no matter what – your health factors in as a very high priority issue!

You see, my home office includes my official work station, but it also includes my personal connection station to the world (including this blog, etc). In recent weeks, the stress at work due to cutbacks has become so high and so toxic that is has leaked into my home sanctuary. In order to deal with the stress of the office, I closed my door by the end of the day on Fridays, and just could not face even the idea of going back into that room until the following Monday. I spent my weekends recovering from the stress and the toll it took on my MS and overall health, including the worry that the stress load could trigger a major seizure event. (Thankfully, so far so good – no seizure!) Good strategy, right?

Yes and no.

What that shutting of the door meant was that I was shutting out the workplace stress. But the secondary effect was that I could not muster up the desire to come in and sit down to write my blog – which a positive tool in my life. It meant that part of my coping mechanism for managing my health became “inaccessible” to me – because I just needed to be away from the “work” part. I worried that I might become a full-on practitioner of presentee-ism in my blog if I chose to write when I could not stomach the idea of being in the office area. What is presentee-ism? Lemme tell you…here is a definition:

Presentee-ism: When employees come to work not mentally present due to an illness, extreme family/life pressures or stress, they are not giving themselves adequate time to get better.

While I do not consider my blogging a chore in any way, the thought of being in my office over the weekend hours considering the amount of work-stress faced daily during the week was just not something I was/am willing to tolerate. I just could not stomach the idea of being in my office, my place of work, on my personal time. I needed an emotional rest on weekends away from anything work-related – because the idea of going into my office made me physically ill. But this in itself caused stress, because blogging is a joy for me – so my joy was being affected! Catch-22!

So – what to do about it? Well – I have decided I need to re-organize my time in a better way so that my joys can be protected from the toxic spillover of stresses from my workplace. Work stress is a fact of life. Chronic Illness such as MS is exacerbated by stress – and boy, have I felt that in recent weeks. Establishing a balance is critical, especially at these times of extreme work stress – working from home can make that balance even more of a challenge to find, and even more of a challenge to maintain!

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” -Mary Anne Radmacher

So – I will keep trying to find the balance, and keep on blogging about this and other life challenges and successes. Life is a series of ups and downs…and there is ALWAYS something to learn!

Namaste

Carolyne

Life and Trust and the Ability to Fly

“I’m flying, Jack! ” ~ Rose De Witt Bukater

This weekend marks the 100th anniversary of the sinking of the Titanic. Living in Halifax for this anniversary has been very interesting…larger than life in someways, and weirdly revealing in other ways. Revealing in that while something as epic as the Titanic exists, what it all really boils down to is trusting the decisions you make every day: Trusting yourself to fly in the face of what seems insurmountable.

One of my all time favorite movies has been and is James Cameron’s Titanic movie. The picture I have above is, to me, one of the most inspiring pictures – because it depicts the first step in someone’s ability to trust themselves and eventually fly free. Why? Because the character of Rose opened her heart just a bit to the possibilities and positive energies of the world just by placing trust in her own abilities, fledgling though they may be, to really fly in the world – recognizing the support around her for the first time. Her eyes were opened to a whole new world and her trust in herself was sparked, to be fueled into a roaring fire.

Confidence and self-trust basically come from the emotional state. Confidence is your ability to cope and depend upon yourself to create a reality that is dependable. When you are dealing with tough situations in life, like a crisis or a chronic illness that must be managed, having self-trust is a critical key to that coping. It allows you to assess the situation, and make decisions – and trust your own decisions. Is it scary? It can be. It can also be the easiest thing in the world.

For me – my self-self trust is something I value greatly. (And somehow, as I have aged, I have noticed it becomes much stronger! All that life experience and wisdom gets packed in the brain nice and tight…or maybe too tight, eh? :) I trust that every day, using all the knowledge I have learned over the years, I can make decisions to keep moving me forward on my own path, unique as it is – no matter what my health throws at me or otherwise.  (And yoga’s teaching & benefits have definitely helped me along that path.)

What I have learned is that there is no such thing as a mistake in life – every experience is something that can be learned from. This I trust – because I trust myself to see the experience for what it is (whether a seizure or an MS exacerbation or something else in life), to find a way to turn negatives into positives, and to generally find the right path forward, even if I may have stumbled off it. My very training as a meteorologist taught me a good part of that – by making self-trust a huge part of the job. You have to trust your information in a smart way, assess and analyse it, discard what has little value, make a decision and trust in your decision. Don’t second guess yourself – as that undermines your own self-trust. Even if that decision turns out to be the wrong one, don’t distrust yourself – you made the best decision with the information you had. You do better when you know better. So, amend. That’s part of the life journey.

“Life is like forecasting. You make a decision based on your best analysis, and if you’re wrong, you change it.” ~ Jim Abraham, Environment Canada Meteorologist

No matter what you are going through in life, there will come a time for  you to fly. Trust in your own ability to do just that!

Namaste

Carolyne

Seeing Through the Loneliness

Remember we’re all in this alone. ~ Lily Tomlin

Recently, someone asked me to write more about the loneliness that can come with living with a chronic illness. Whew – that’s a tough subject, eh?

Loneliness is more of an emotional state consisting of a hollow emptiness and profound unhappiness. It is not a voluntary condition like solitude might be. Loneliness can affect us all at different times, in different ways – whether it’s a fleeting feeling or a constant state of disconnection or isolation. For people with chronic illness, this can sometimes play a significant role in managing their lives.

Unfortunately, the reality of managing a chronic illness is that sometimes you have to make decisions about what you can handle physically at times – decisions that sometimes conflict with family functions (such as Easter Celebrations), or social functions, or physical challenges. Sometimes this can be a really bitter pill to swallow – especially if you have prepared ahead of time the best way you could, and your health takes a different turn, forcing you to cancel plans. At times like that, loneliness can hit like a sledge hammer, especially if you are possibly bed-ridden or otherwise hampered from your usual activities,

It is difficult to experience loneliness, and all the emotions it comes with. At times like that, it is very important to be kind to yourself; be gentle with yourself. Do things that get you to feel more “connected”, such as social media like Facebook or Twitter – it make all the difference in the world when it comes to dealing with loneliness.

Sometimes, no matter how much a person tries to cope, there is the need to speak with a professional. A counselor can help you manage negative emotions that seem to be a part and parcel of loneliness.

Personally – I find I crave solitude at times, but sometimes even the solitude can trigger bouts of loneliness. I find though that those bouts of loneliness are usually triggered by periods of forced solitude (such as an empty nest scenario) combined with deep fatigue or pain caused by my illness. As long as I keep my non-attachment perspective and can see the loneliness for what it really is, I am able to see the light at the end of the tunnel.

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being. It is, after all, one heart touching another heart. ~ Roberta Sage Hamilton

Remember – you are never truly alone. Just reach out. Reach out to family, friends, bloggers. Find the courage within yourself – it could be the biggest, most courageous step you will ever make. Reach out and touch another heart. They may be just as lonely as you – and suddenly, two feels less lonely, three feels even less lonely…

Namaste.

Carolyne

The Summer of Challenges – Facing Fears and Pushing Boundaries

The scariest moment is always just before you start. ~ Stephen King

This spring and summer I will be facing some fears, adjusting to changes, and pushing my own limits. I decided it was time – because I was noticing that I was falling into a fear-based place that I was increasingly uncomfortable with.

The persistent one was about getting on a bicycle again for the first time in years. Not scary for most of us, right? For me – it came about due to my inability to drive anymore due to my seizures, and the docs’ recommendations to stay on quiet streets if I decide to get on a bike again. Not being able to drive any more has often left me feeling somewhat trapped – and that was exacerbated in recent weeks when our local transit service went on strike for a number of weeks. So, recently, when I reached a breaking point of “trapped-ness” I bought a bike  that I found on sale at a local store. I decided it only made sense to ride it back home, especially since I was contemplating joining an MS Bike team at work.

What a fiasco! I more or less walked my new pretty bike home with spurts of riding it…with periods of breathing that sounded like I was coughing up a cow!! Bikes have really changed since I was last on one, and just getting used to the gearing was a challenge. But I made it home…and promptly collapsed on the couch – marvelling that I had not killed myself! My butt was aching and sore – so apparently all those years of biking in high school and university didn’t “keep”! Go figure, eh? And muscles that I forgot I even had were screaming at me. But I loved the rush of success. I did it – maybe not stellarly – but I did it. And the success of it has stuck – so I committed to riding with the MS Bike tour team at work. (Oy – this should be too funny over the next weeks as I “train”…I’ll bring my camera!)

The experience reminded me of a lesson I learned long ago: Feel the fear, and do it anyway!

So I am committing myself to a number of fundraising challenges this spring and summer, including the MS walk and MS Bike tour, as well as a couple of others (like the Blue Nose Walk/Run with the team at All Yoga .)

“Only those who will risk going too far can possibly find out how far one can go.”T.S. Eliot

Namaste

Carolyne

Toxic People are also Toxic for your Health!

Live or die – but don’t poison everything. ~ SAUL BELLOW

Have you ever been stopped in your tracks by the negativity of someone around you? Blinded by their own negativity, they are prevented from seeing the good around them.  I definitely have been affected by toxic people at times in my life – and it drains you of valuable energy – energy we need to keep healthy and promote our well-being.

Recently I had to spend about an hour or so with someone that I typically avoid because of the negative energy he continuously exudes. I had braced myself for the necessary time – but sure enough, within the space of about 75 minutes he had managed to insult me, a number of my colleagues, and even my mother!! Because I refuse to engage with such people at their level, I simply kept a peaceful smile (my yogic smile) on my face and made no comments to his roiling negativity, as to engage with him, even if only to point out the positives, would be about as useful as banging my head repeated against a brick wall. But the moment I was able to get away from him, I did so.

Even so, I was completely drained of energy and had developed a pounding headache. It just re-enforced to me what I already know: toxic people are toxic for one’s health! It took me a good part of my evening to slough the negativity residue off me…by doing some yoga and watching comedy. And it highlighted once again to me that part of managing one’s health is also managing (where possible) how much, if any, exposure you allow yourself to people of a toxic and negative nature.

The best way of removing negativity is to laugh and be joyous. ~ David Icke

So – laugh. Enjoy the sun. See the positive around you – really see it. And walk away from chronically toxic people whenever possible. It’s called self-preservation!!

Namaste

Carolyne