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

A Type-A Personality Trapped in a Type-MS body?

“Imperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.” ~ Marilyn Monroe

Have you ever felt…well, trapped…trapped in your own body?

I recently was talking to a friend of mine who was experiencing just those feeling, and was down emotionally. She has an injured foot, and it is a permanent injury thanks to the incorrect efforts of a doctor who initially treated her. As an athlete, she can no longer participate in her sport. Walking for her has become a painful experience – and sometimes she needs a cane. Running – well, just forget it. But the loss of her usual mobility has left her feeling trapped – trapped in a body that won’t function like she wants it to do. Her identity is impacted – who is she now, in her own mind, “excluded” from her sport of gymnastics? Depression is a resulting possibility.

As a person with MS and Seizures (or any person with a chronic illness, such as multiple sclerosis), I fully understand that feeling of being “trapped”.

Sometimes, I want to rant and rail at the world too, asking the heavens “Why? Why am I trapped in this body that won’t keep up with my mind?? Why me? Why now?”

Lately, I feel like I have been dealing with an inner simmer of emotions, tears often close to the surface. (Well, that may be due to menopause or just that fact that I am a soft-hearted sappy and sentimental person…but that’s for another story! :) )  I have been dealing with an MS exacerbation for a number of weeks now, and it has weakened & fatigued my muscles to the point of significantly affecting my back injury from my seizure/car accident years ago. I have had to pull out the old cane, and I am on restricted activity as a result. I feel trapped by my own body’s limitations. I am wondering if I am dealing with a new “normal”.

Being an active person, and always “into things”, the idea of having to slow down, or even stop, can really impact my own identity – even though I know that slowing down is necessary as a management strategy for my health. I have SO many things I want to do – go out with friends; be more active with my family; participate in my hobbies; be able to work full-time and with full cognition at all times. Personally, I can get alternately weepy or cranky as the intensity of the feelings of “trapped-ness” vary. Right now – with my exacerbation lasting so very long, this trapped feeling is too real. Having to slow down and really rest is too constraining, irritating, frustrating…and down-right annoying.

So – how does one deal with those feelings? Well – that is very individual. Personally, I deal with it with sheer stubbornness. Is this always good? Sometimes yes, sometimes no – depends on the situation (and how ornery I am being). For example – my back injuries have been so painful of late that only being in the water gives me any real relief. So I went to synchronized swim practice as per usual, despite fatigue, seeking the bliss the water provides me. Well, early into the practice, I had a wave of virtigo hit me so hard that up was down, down was up…and my coach had to steady me on the side of the pool. She asked if I needed the lifeguard, and I said no – determined that this too shall pass. It idid – after about 10 minutes of resting on the side. I then got back into the water and continued the practice but at a reduced level of activity. (Note: I do not recommend this level of stubbornness to everyone. Safety first!!! I am just sharing my stubborn levels and its craziness!) 

I got through the swim practice fine thereafter, and found the bliss of the soothing water once again. But, whew – am I nuts? I just refused to be “trapped” by my body’s limitations that night, dammit! I am a type-A personality “trapped” (at times) in a type-MS body.

So – if this IS my new “normal”, then I have to re-discover myself a bit. I have to re-jig my health management routines and strategies to accomodate that new “normal”. Living with MS, that is simply a fact of my life. Change is a fact of Life – no matter who we are.

“When you are content to be simply yourself and don’t compare or compete, everyone will respect you.” ― Tao Te Ching

Oh – and my friend? She took up a new sport as a way to “un-trap” herself: synchronized swimming! It accommodates her foot injury just fine! See? There is always another option, a way to manage and accept what you are dealing with in life. One just has to be open to looking for it – and seeing it! (But maybe keep an eye on the level of stubbornness in your choices! :) )

Namaste

Carolyne

Allowing for Personal Renewal in 2013!

“I can hardly wait for tomorrow, it means a new life for me each and every day.” ~ Stanley Kunitz

Image Source: http://breastcancerpartner.com/blog/uncategorized/renewal-spring-is-here/

Image Source: breastcancerpartner.com/blog/

As 2012 came to an end, some sighed in relief that the world did not come to the prophetic end. Some did not have any clue that 2012 was supposedly an “end” to anything. Most of the world simply went on living life as usual.

Everyone has their own individual experience with the past year (2012) so I am not going to do any kind of run-down of 2012 events. We all can do that on a deeply personal level. Look back at 2012 and recognize the blessings there. Recognize the challenges and subsequent learning opportunities. Recognize the achievements and appreciate the moments of joy. Be grateful for what 2012 brought to your life, big or small. Then, let go of 2012 and move on to a sparkly shiny new 2013.

The year 2013 for me will be another year of change and goal setting. Here are a couple of my personal goals for 2013:

  1. Get into optimum training form. To do so, I will kick up my synchronized swimming training efforts a notch to make my goal of competing by  my 50th birthday in spring of 2014 a reality. (I have already begun this one by joining a local gym with my hubby and beginning a training regimen tailored to my injuries and medical adjustments and my goal of competing. This should complement my weekly synchro swim training sessions well! ) 
  2. Keep on top of my health management by ensuring I maintain a healthy diet and manage my fatigue properly. To do so, I will follow a healthy diet with as much raw foods as possible. I will not over-extend my energy limits to the point of exhaustion. I will schedule in more relaxation yoga and meditation.

The greatest mistake a man can make is to be afraid of making one. -Elbert Hubbard

The training goal is the tough one physically. While there is definitely excitement to be back in the water and training competitively in synchronized swimming, I battle frequently with a little niggling fear in the back of my mind that maybe, just maybe, I have bitten of more than I can chew this time. Little ghosts of thoughts cross my mind, such as: Will my body be able to handle this? Am I crazy? Am I too old? Am I too “disabled”? Does it stop me? Heck no. But it does keep me on my toes and AWARE of myself and my own qualms.

The first step towards getting somewhere is to decide that you are not going to stay where you are. -J. Pierpont Morgan

The health management goal is the toughest one. That’s the one where I have to really fight myself to keep…because I can so easily slide into bad eating habits or push myself to  work too much when I am over-tired. When I am fatigued is also when my brain does not seem to function at its best, and I have been known to make really weird decisions in terms of best choices at the times. (I believe my sister often uses the phrase “OMG – Do you need a brick to hit you in the head every time to get you to finally rest???” ) Trying to get a Type-A person to recognize when she is in full Type-A throttle and to scale back can be quite a challenge at the best of times!

So – do I expect to be perfect this year in reaching my goals and resolutions? Heck no. But I will have fun on the path!

OUR GREATEST GLORY IS NOT IN NEVER FAILING, BUT IN RISING EVERY TIME WE FALL. -CONFUCIUS

Have fun on your own 2013 journey!

Namaste.

Carolyne

Health Management still applies during the Festive Season

Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. ~ Buddha

We are in the midst of the holiday season festivities. This is a happy, busy and tiring time for many. It can also be a lonely time for some. Both ends require efforts to management of health.

When dealing with a chronic illness, there a more challenges afoot: trying to maximize your ability to meet social and family commitments while minimizing the drain on your energy and any impact to your health. Impacts that come not just from the demands on time and energy, but also the changes in diet and drink consumption. (Those mince meat tarts of auntie’s are to die for…oh and the cookies, cakes, hor d’ouevres, tourtieres,…oh my! What do you mean this is not the way to eat every day? Oh…my head…how many glasses of wine did you say?)  We eat differently, don’t sleep the way we normally do, and push our bodies to meet social and family functions. While all this can be fun…we need to pace ourselves and keep our health management need very clearly in mind. Because pay back is a Bi**h!

In the old days, it was not called the Holiday Season; the Christians called it ‘Christmas’ and went to church; the Jews called it ‘Hanukka’ and went to synagogue; the atheists went to parties and drank. People passing each other on the street would say ‘Merry Christmas!’ or ‘Happy Hanukka!’ or (to the atheists) ‘Look out for the wall!’ ~ Dave Barry, Christmas Shopping

So, from me and mine to you and yours: Happy Holidays! Happy Hannuka! Happy whatever! (And look out for the wall…)

Oh – and congrats on surviving the end of the world prophecies! ;)

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

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

Forging New Ground and Setting Goals

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’
You must do the thing you think you cannot do. ” ~ Eleanor Roosevelt

Well, I am back! Didja miss me?

I took some time off from my busy-ness to rest for the past few weeks over the summer, as the heat was taking a toll on my health by flaring up MS symptoms (even my old one of MS Hugs – not fun). The rest was well worth it – mentally, physically and emotionally – though I can’t really say I was not busy!

The busy-ness seemed to morph somewhat, rather than disappear. Isn’t it amazing how you can take something of you to-do list, and other things magically appear to take the place of the things you removed! Case in point: My upcoming next month or so I will hopefully be moving into a new home that we offered on, getting married, working full-time and balancing life while working on some large projects at the office, and also trying to forge some new ground.

What do I mean “forge some new ground”? Well…Having the time to “rest’ (HAHAHAHAH!) allowed me to look inside and prioritize what I needed to manage most – including wrapping up old issues that I had pushed to the back-burner to “deal with” later. One of those issues was my fear of getting back in the water…fear created by my history of seizures.

You see, sometimes living with chronic illness can feel emotionally like someone is slowly chipping away at you – who you are, what you can do, what freedoms you can still enjoy, and so on. For me, the seizures came with a fear of being in the water…because that is a very risky place to be during a seizure. I had stopped taking baths (don’t worry – I do shower :); I had stopped my competitive swimming (mainly because of the virtigo); I had given in my driver’s liscense which effectively reduced my freedom. And I felt like a vital piece of me had been suffocated by my seizure disorder with all these little pieces going down. Combine that with the stigma against seizures that I experiences in the spring…well, if any of you follow me regularly, you know that that is a trigger for me to “Face the Fear” and make a change.

So – what did I do? I set myself a  big goal and a cause: I will be swimming competitively again by my 50th birthday and raising awareness of stigma against Seizure Disorders.

I have joined the local Masters Synchronized Swimming team. I have roughly  2 years until I turn 50 (fifty) years old – and I plan to be in the water, doing a synchronized swimming routine competitively, and showing people that no matter what, seizures or no – it CAN be done. (And – also to show that being 50 years old or over does not means everthing stops…one can still be at the top of their game. Though maybe the games rules are a bit different?)

Facing my first fear was to get back in the water. And I did! I got back in, and my ol’ body remembered how to do the synchro figures – though I gotta say, my “ballast” feels alot different than when I was 17 years old and competing! I completed my first 90 minute training with no problems (other than recognizing that I haven’t used certain muscles in a LONG time…and I have a lot of work to do! Thank God for yoga – it will be my rock for this in many ways – including core and flexibility!)

How do I feel after my first session in the water? Physically – exhausted! But emotionally and mentally? Fantastic. Determined. Courageous. Powerful. I faced a fear – the fear of getting back in the water – and did it anyway!

Does it cure my MS or my seizures? Heck no! But it does increase my confidence in my own ability to create and live my life in the way I see fit, no matter what my illness throws at me!

“Decide that you want it more than you are afraid of it.”~ Bill Cosby
So – what’s your goal? Is it big? Small? It really doesn’t matter – it just needs to fit YOU! (Size is just a matter of perspective, anyway, ain’t it?)
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

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