Category Archives: life balance

Try, Try, Try. Period.

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“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

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It Takes a Team to Manage your Health

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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

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The Button and Identity

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“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

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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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