Category Archives: life

MS Whammy: The Raw Emotional Impact

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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

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Allowing for Personal Renewal in 2013!

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“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

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Health Management still applies during the Festive Season

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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

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Serenity in the Challenge and the Chaos

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“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

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Never Say Never…

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“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

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