Try, Try, Try. Period.

“If you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But, by all means keep moving.” ~Martin Luther King Jr

Sometimes it takes digging deep – really deep – to keep getting back up and trying. Has anyone else noticed that?

I have been going through an exacerbation of my MS symptoms, with old symptoms returning with a vengeance. To complicate matters, my peri-menopausal flare-ups are adding new symptoms that I am trying to wrap my head around, as well. Combine the two – and well, we have a pretty fatigued and worn-out Carolyne on hand.

Last week was a particularly busy week at work, and I had to be on-site at the main office for most of the week. My MS symptoms were flaring pretty badly before the week had even started, with MS Hug episodes taking my sparkle down to a dull “splat”. Then, the 2nd day into the busy week I was hit by what I am now calling the dreaded peri-menopausal period. My fatigue and pain got so bad that one of the days I actually left the room full of people I needed to be with, headed to my office, shut the door, and lay there doing the yoga “legs up the wall” pose for 20 minutes…just breathing and trying to meditate to reduce the pain and fatigue and brain fog. (I think someone may have come into my office during that time…but left when they saw how busy I was!)

My synchro swimming was also affected in that my coach could tell right away that something was not right. She could see my fatigue and my balance was way, WAY off.

SO…this peri-menopausal period stuff seems to be becoming quite the deal-breaker for me lately. Cramps worse than when I was a teen. Fatigue like a sledge hammer. Brain fog galor.  Is this normal for someone with MS, or for anyone?? I really don’t know. Doctors don’t like to say anything for sure, though some websites do mention that hormonal changes can affect MS symtoms. I am here to say that when my period comes these days, it is like I have been hit with the Fatigue Hammer of the Gods! Holy crap! I can’t think straight; my pain levels skyrocket; and my fatigue takes me down to the ground. So…seeing as I am my own science experiment…I would say that my observations are telling me that my peri-menopausal menses and symptoms are prone to exacerbating my MS symptoms greatly. And I don’t like it!!!

But – no matter what, crushing pain or no, I have a family to take care of…so I gotta push through the pain, fatigue and brain fog and just keep tryin’. When I came across the song and video by Pink, it resonated with me…and to me, it inspires the will we need to keep trying.

“But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try try try
Gotta get up and try try try”
~Pink

So that’s what’s been going on with me. I am getting up. I am trying. Period.

So what’s going on with you?

Namaste.

Carolyne

It Takes a Team to Manage your Health

Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.  ~World Health Organization, 1948

One thing I have learned over the years is that the support of a team is essential for so many achievements in life, be it at work or at home. The same is very true for managing health if you live with chronic illness.

But what does that team look like? Well – it varies for every person. A team can be you and a family member. It can be small. It can be large. One large team…or teams within a team. It can consist of close contacts. It can consist of near strangers. What matters is that you feel supported by your team.

I consider myself very lucky, despite my health challenges. I have a fantastic support team. My support team includes my family, my colleagues, my medical healthcare team, my pets, my yoga community, and my new synchro swimming buds. One large team…with teams within a team.

Each member of what I call my support team helps me along my journey and in managing my health in his or her own way, at various times. (And yes – sometimes they don’t even know how much they may have helped me in one moment or another.) My husband cheers me on, and is there to catch me when I fall or when I just need someone to hold me and hug me and tell me it will all be ok. The rest of my family are also there to cheer me on and catch me when I fall – as are my closest friends. My boss allows me to work primarily from home so that I can keep working. I also am lucky enough to have developed good relationships and friendships with my medical support team – from my neurologists to my massage therapist, chiropractor, and osteopath. With my synchro team, I have a fantastic coach who supports my goals for competition and respects me enough to push me when she knows I need that pushing. My health history doesn’t scare her at all.

I am very appreciative of all of their contributions to how I manage my health. And I try to let them know that as often as I can.

And I appreciate you all – as my readers, you are also a part of my support team…so thank you!

Teamwork is the ability to work as a group toward a common vision, even if that vision becomes extremely blurry. ~Author Unknown

Who  makes up your support team?

Namaste

Carolyne

The Button and Identity

“An identity would seem to be arrived at by the way in which the person faces and uses his experience.” ~ James Baldwin

Can a chronic illness like MS affect your identity? You betcha! You see, personal identity (our sense of self) tends not to be an unchanging concrete thing. It tends more to be a dynamic concept that  fluctuates with life experience.

Our sense of self includes anything such as life/professional roles, personal attributes, behaviors, and aspects that we consider most important about ourselves. The aspects that contribute to our self identities can be things like occupation, hobbies, athletic ability, family relationships, marital status, disabilities and health…among many others.

My own identity can be shaken at times by the twists and turns of my health due to multiple sclerosis and seizures. And often, the symbol of that comes in the form of a button…a remote button I wear around my neck so that if I fall or drop due to a seizure, emergency personnel will be called and sent directly to me, even if I am unconscious. I have a love/hate relationship with that button. It is because of the button that I can be alone and maintain my independence. It is because of my health condition that I need the button – so when my health is at a lower ebb, and I have to wear and count on that button – it becomes a symbol of my dependence and a perception of freedoms lost.

In the last few weeks, as a result of the overwhelmingly busy schedule I have been keeping with workload, travel, wedding, moving, packing, unpacking, and so on… I have ended up dealing with a deeper MS exacerbation physically than I have in a while. My muscles are weaker than normal, exacerbating my spinal injury, triggering more weakness, and so on. As a result, in order to ensure my safety, it has been important for me to wear my button “just in case”. This “just in case” part is primarily because we don’t know if a seizure will be triggered or not. I end up feeling “less than” because I need to slow down. I know – it is not logical…but it happens sometimes. (That’s where a good support system helps!)

That’s where identity comes in, because when you can’t do what you are normally accustomed to do, it can affect your sense of self. Sometimes we can feel a sense of guilt for being unable to participate at a certain level. Or we can feel isolated. It is imperative to remember, at that time, that we are not just one thing (i.e. wht we do, or how we do it, or…). We need to ensure that we don’t allow what we can’t do in one moment to impact our sense of identity in any moment. And it can be easier said than done, depending on our own personal sense of self.

Every new adjustment is a crisis in self-esteem. ~ Eric Hoffer

Now where did I leave that darned button?

Namaste

Carolyne

Serenity in the Challenge and the Chaos

“Life is either a daring adventure or nothing at all.” ― Helen Keller

Whew – life can get chaotic sometimes, can’t it? I think of my own life right now – talk about chaos! Sometimes I am exhausted just thinking about it: a new marriage; long-term things coming to a head at work; moving an entire household; taking on a new cause and awareness raising initiative; raising teenagers; and staying on top of my health management. Keeping balance through our chaotic times can be a challenge in itself.

Life can be full of challenges in periods of chaos. And – sometimes challenges can bring us adventure – and sometimes that very adventure brings us serenity and inner peace.

Even with all the “busy-ness”, I have been feeling more “me” than ever before in my life. Part of it is that I married my life partner, BFF, and soul mate. Part of it is that I am “able”, despite my health constraints. But a big part of it has been facing a huge challenge and taking a little slice of “me” back from the constraints of my chronic illness – in this case, by getting back into the water.

Synchronized swimming is back in my life – and, boy oh boy, did I ever miss it and hadn’t even realized it! I am a water baby at the core – always have been. I am never more relaxed mentally, spiritually, and emotionally than when I am in or near water. My personal challenge is to be fully active and even competing in the Masters Synchro world by my 50th birthday. That is not that far off. The biggest challenge was getting back in the water itself – knowing that a seizure in the water is a dangerous thing.

You see, I want to raise awareness for the Stigma against Seizure Disorders as I travel this journey I call my life. (Look for a facebook page down the road. Yup – more to keep me busy and challenged!) Raising awareness means being transparent to a large degree. That is, in and of itself, a challenge. It means disclosing (repeatedly) that I have a seizure disorder – but that I don’t let it stop me from living my life to its fullest potential. It means telling each lifeguard what I need them to watch for and do. It means making sure that my coach knows what my “deal” is – and making sure she is comfortable with it. It means facing the fear every day. It means working every day to keep motivated, no matter what.

But these very challenges are the fuel that fire my inner peace. Knowing I may help just one person by sharing my experiences fuels that fire, and brings me a sense of serenity. Knowing that I have the courage to face a fear and break the social assumptions by getting back into the water, despite all the warnings about the dangers – that brings me a sense of serenity and inner peace. (Being underwater in the cool blue – that alone brings me serenity.) That’s what works for me. That, currently, is my daring adventure!

Finding serenity and inner peace – that is a personal journey, and each individual defines that for themselves. Serenity and peace in the challenge and chaos – I firmly believe it can be found…if you allow yourself to see it and recognise it. What does it look like for you?

“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ unknown

Namaste

Carolyne

Never Say Never…

“The best way to find out if you can trust somebody is to trust them.”― Ernest Hemingway

Have you ever found yourself saying “I am never going to …something, something …again!” And you really meant it?

I found myself saying that about marriage and pursuing relationships, and that “never” sentiment was reinforced over the last years as my health issues evolved and became more “dramatic”. You know the saying “Once bitten, twice shy”…well, that was definitely me – especially when it came to being able to trust someone to understand or be able to handle life in the chronic illness lane with me. Yet I got married just this month…after almost a decade of saying (and meaning) “Never again!” And I did so with full trust and deep happiness. My husband is the kindest, gentlest, most patient and loving man I have ever known. Trust is instinctual for us together – he’s got my back, and I have his – no matter what comes down the road we are traveling together. I trust him with every fiber of my being.

“Have enough courage to trust love one more time and always one more time.”― Maya Angelou

Trust. It’s a funny thing – trust. It’s just a small 5 letter word…yet it is such a huge deal. And trusting yourself – that’s huge, too. One thing I have noticed over the years of dealing with chronic illness is that as my illness evolved, my trust in my own abilities became shakier. My ability to trust my own body to “have my back”, so to speak, goes through ups and downs – especially since my seizures have no known trigger and have been so violent. Some days I can’t trust my brain to function the way I need due to fatigue and brain fog. Other days, I am firing on all cylinders and can trust my abilities to take me to the moon, if needed.

Chronic illness can lead to various forms of distrust and mistrust – distrust of our own bodies to carry us through our daily lives; mistrust of our professional circles due to worries of illness stigma or biases; uncertainty about the future of relationships and the ability for family and friends to cope with the fallout of chronic illness over time. This makes it challenging to go about daily life – and some days can be much more challenging than others. But the thing is, we have to find a way to come to terms with changes in our lifestyles and bodies – so we have to trust our bodies and trust ourselves to handle whatever develops. We have to trust our friends and families to be there with us, to be patient with us, to try to understand us and what we are going through. We have to take the risk to trust.

“Mistrust makes life difficult. Trust makes it risky.” ~Mason Cooley

From where I am sitting right now – I gotta say: Never is a really long time – and trust is always worth the risk.

Namaste

Carolyne

Rest: We will Return after These Messages…

“Sometimes the most urgent thing you can possibly do is take a complete rest.” ~ Ashleigh Brilliant

Two Sisters – Ah…Savasana in the sun….

Summer sun – is there anything more wonderful? The warmth? The heat…the baking heat…frig, it’s hot.

This summer, with much of the continent affected by recorded breaking temperatures, there have been many people seriously affected by the heat. I myself am also experiencing the MS effects of heat more than I ever have in my history with MS. For example – my legs gave out twice on me while out and about in the Rockies. My hubby-to-be, Mike, actually had to catch me in one of these episodes as my legs simple “let go”. (I happened to be on the cliff side of a hiking trail…so I am glad he caught me!!)

I am, as many MS’ers may be, experiencing big flare ups of my symptoms due to the summer heat. So – I am going to rest for the next few weeks, and simply take a break from my “busy-ness” by purposely being less busy. Believe me – that’s not easy for a type-A personality like me! I gots things to do, places to go, people to see, blogs to write…the list is endless. But I mentally, emotionally, and physically need to do this.

“I know exactly what I want. Everything. Calm, peace, tranquility,
freedom, fun, happiness. If I could make all that one word, I would – a
many-syllabled word. “- Johnny Depp

So – see y’all in September. have a great summer – and remember to rest!

namaste.

Carolyne

The Beauty of the BUT

No one saves us but ourselves. No one can and no one may. We ourselves must walk the path.” ~ Buddha

Have you ever noticed how the word “but” can can change the meaning and context of communication and self-talk in subtle but distinct ways?

“I’m sorry – but it’s not really my fault!” – redirecting accountability

“I know this isn’t good for me – but it’s just this once.” – rationalizing

But’ can be a powerful word for such a small one. Often, using ‘but’ contradicts  or rationalizes the intent and context the speaker. However it also can affect the expectations of the listener.

I was on my yoga mat the other day thinking about this, after my lovely teacher Kim (ALL Yoga) spent some one-on-one time with me to bring me back to the simple joy of yoga – all forms of yoga. In trying to settle my mind during my practice and especially savasana, the word “but” kept floating in. “I  should spend more time on my mat, … but I am so busy at work; but I have so much to do around here; but my friends or family need me to do this or that.” “I’d try that, but I am not sure I can do it successfully.” But, but, BUT.

But can stop you from moving forward…as you rationalize you way into and out of scenarios. When challenged with chronic illness, the word but can become the crutch that stops us from trying new things, keeping up with the old, or moving out of the current comfortable (or not so comfortable) “status quo”. Sometimes this is good…however sometimes, we need to stop using “but” in order to change.

Did you know that the word “but” as is, in French, is pronounced more like “boo” (with more nasal intones) and means “goal”?

So you know what I decided to do? I decided to use the word “but” in the context of “goal”.  As in: “I know I have challenges to face. But I know I can overcome them.”

Mon but dans la vie est de prendre bien soin de ma santé , de ma famille, et de mes amis.

How’s your “but” doing?

“Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.” ~ Jamie Paolinetti 

Namaste

Carolyne

Illness Stigma: A Funny Thing Happened to me on the Way Home…

Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of ‘crackpot’ than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost. ~ Chauncey Depew

You know, it still shocks me when I run into bias or stigma against illness. It shouldn’t – but it does.

Having MS, there is a stigma – a stigma regarding chronic illness and personal capacity. People assume you will quit work immediately, or that you will never  be able to participate in activities, or that life is generally over for you and your family. (Seriously – I have run into that.) But much of that can be mitigated to some extent by personal health management. Admittedly, many people who are hard hit my MS have visible limitations, but a large part of people with MS lead quiet lives managing their symptoms, and doing everything in their power to lead as normal a life as possible. And typically, the first reaction a person shows to hearing you have a chronic illness like MS is compassion and sympathy.

Not so with a seizure disorder.

I was dumbstruck the other day when I was traveling home from a business trip. I was travelling home alone from Calgary, and I did as I had been advised by my neurologist for such cases: I informed the flight boarding staff that I had a seizure disorder, and gave them pertinent information. (Note – I have travelled many times alone on business and done this very thing before.)

Much to my surprise, instead of being met with compassion and gratitude for my disclosure (as this helps them do their jobs proactively), I was met with fear and put on notice that I may be refused boarding. WTF????

I was shocked – then livid. Thoughts ran through my head simultaneously, such as: “ExCUSE me?” “Why did I say anything?!?!” “I have survived childhood & domestic abuse, MS and multiple seizures – and you think your fear is gonna stop me from getting home on this plane??? HAH! ” “How DARE you try to keep me from my family through your ignorance!” “What’s next? Are you going to refuse diabetics boarding privileges – they could have an urgent situation. What about people with high blood pressure? Past heart attack patients?””This person has no clue about seizures – I should take the opportunity to educate her now…seriously!” Of course, all this ran through my head in split seconds – and I did not say any of this out loud.

I didn’t go all “corporate dragon lady” on them (as my sister likes to say), but I definitely stood taller, and my voice got much firmer as I dealt with them. I became seriously resolved, and solid as hell.  In the end, the issue was resolved, and I boarded the plane.

But it got me thinking about the stigma – and one’s ability to deal with it. Seizures, as I have discovered, seem to evoke a fear and stigma quite different than that of MS. MS seems to be “socially acceptable”, for lack of better words. But seizures…well, seizures are scary. Seizures can be messy. Seizures means knowing what to do in an emergency. Seizures mean…well, for someone not educated in what seizures are…seizures mean that the person is often perceived as a walking time-bomb, and you don’t want to be around a bomb!!

I consider myself lucky – lucky to be the person I am, as educated as I am, and as strong as I am. Yes – I have random tonic-clonic seizures. Yes, they are scary, and yes, I lose consciousness which means I need help. But I also have a brain that works. I am very well educated and I have the ability to manage my health to mitigate health issues. And I have the self-esteem and self-confidence that comes from age and experience to stand up to yahoos who express un-informed fears and stigma. I am not afraid to stand up for my rights, and when faced with such bias, I have the ability to make myself be heard.

But what about those people out there that DON’T have that life experience, or that self-confidence, or whose self-esteem is already hard-hit due the their seizure disorder? Those people who have been rejected, turn away, left by friends or family, as a result of life and/or illness? Running into that kind of bias and stigma that I experienced from an airline attendant can be absolutely devastating. Self-esteem can be seriously damaged. This in turn affects how that person copes.

Bias and stigma like that make people hide themselves. And no one should have to hide themselves – seizure disorder, chronic illness, or other.

I believe I now need to look deeper into this cause and see where I can help make a difference…no matter how small.

“One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world, making
the most of one’s best.”
- Harry Emerson Fosdick

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