Oh yeah – I have MS, that’s why…

Men weary as much of not doing the things they want to do as of doing the things they do not want to do. ~Eric Hoffer

Is it just me, or do you ever find yourself wondering: “Why am I so tired?”

Sometimes, believe it or not, that is exactly what I find myself asking. “Why am I so tired?” “Why can’t I focus?” “Why am I having so much trouble thinking?” “Why can’t I remember things?”

Then I remember. “Oh, yeah – I have multiple sclerosis…that’s why.”

As many of my friends, family, and followers know – I like being active (mentally and physically). It is hard to hold me still, especially if I am passionate about something. I work full-time (and I am an A-type high achiever); I swim competitively; I do yoga regularly; I volunteer my time in various efforts; I take care of my family; I help out friends wherever I can.

So when I have days that I simply cannot think, or pain flares big-time, or I am so fatigued that I literally sleep for 20 hours in a row or more…it still stupidly surprises me. I actually ask myself “why?” Then remember – “Oh yeah – I have MS.”

My capacity for forgetting seems to be limitless!

Yes, I work full-time – but from home, as a result of an accommodation agreement with my managers. Yes, I volunteer – but in a capacity where I offer my time, and it is not physical and I can do it from home or face-face.  Yes I am very physically active – but in a self-regulated and methodical way, and because it is a management tool that helps reduce my pain, which in turns helps reduce the fatigue. In other words – I have MS, and my life and how I cope is directly affected by that fact.

Now I consider myself very lucky because I am abe to be so physically active, and the docs say my MS soes not seem to be taking me down a path where that would change anytime soon. (Cognitively however…that is a different story for another day…) The very fact that I am so physically active, and often more physically active than my “healthier” friends, is the very reason that sometimes I can find myself wondering WHY I am so exhausted or in such pain, or so mentally fogged. I mean, I “look good for being so sick”, as some people would say. (That phrase irritates so many of us…)

And the one thing I do know, and never forget, is that being physically active is good for ALL of us, MS or no MS. The more active I am, the more active I am able to remain. (Though there is a critical tipping point one must be aware of for maximum benefit.)

And yet -The more active, engaged, and passionate I am in my life, the more often I find myself “surprised” by being taken down by my MS at various points. You see, the more I do, the more I feel i can do and am able to do with ease. I will be trucking along at what I think is a fine speed, then WHAM – all of a suden I can barely think, speak, move or keep my eyes open, and my pain is high, and brain fog thickens. And I still ask myself “Why am I feeling like this?”

Oh yeah – I have MS. That’s why.

At those points, I basically have no choice but to let go, and do what I must : sleep and recover. (The latest episode had me sleeping almost 30 of 36 hours. Whoa.) But giving in to the body signals for sleep is a good thing, even though today’s society can often infer a stigma of “laziness” on it. You hear it in comments like “Lucky you – you got to sleep the day away!” It is really not such a lucky thing…it is a matter of sheer necessity. And that is OK.

‘Tis healthy to be sick sometimes. ~ Henry David Thoreau

Namaste.

Carolyne

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!

Chronic Illness and Mental Health: Ghosts We Fear to Discuss

The moment in which the mind acknowledges ‘This isn’t what I wanted, but it’s what I got’ is the point at which suffering disappears. Sylvia Boorstein, Happiness is an Inside Job

Did you know that today, February 12th, is mental Health Awareness day? It’s a day for talking about what most of society wouldn’t talk about in the past. The stigma is HUGE.

Well, by now most of you know how I feel about stigma!

Depression is one of the “side effects” of a chronic illness, like MS… a struggle with maintaining good mental health. Personally, I call my own struggle as a struggle with the Ghosts of Lifetime Past. Let me explain…

What I have noticed over time for myself is that as my MS has progressed, so has my own awareness and understanding of myself – but in ways I never could have seen coming. For example, PTSD (Post Traumatic Stress Disorder) is a fact of life for me now…for various reasons and at various levels of complexity. When my symptoms of fatigue and pain pull me down, I tend to feel like a burden to family and friends. (Rationality has nothing to do with it!) I then can tend to feel depressed and even more emotionally exhausted…and I want nothing more than to “escape” from this burdensome-ness by disappearing somewhere, anywhere. I understand now that this comes from past emotional trauma from a very young age in which I was the oldest child of an alcoholic parent who would insist that our entire family would end up living on the streets without a home nor food and in rags if I, as oldest child, did not “shape up, do more to take care of the house, and be more responsible for my siblings“. I was 8 years old when that particular burden began being laid on me regularly. (This typical “burdening of the oldest child” usually came after my parents fought over my father’s alcoholism and my mother was ready to kick him to the curb.) So for me – I can begin a cycle of feeling very depressed when my symptoms flare up and create change or havoc in my life. I feel like I am failing at keeping the family together, happy, fed, successful. These are literally ghosts of my past – being exacerbated by symptoms of illness in my present.

But – Why do I understand it now? Because I talk about it. Because I look into myself. Because I seek self-awareness everyday.

The thing is – everyone has old ghosts. And chronic illness can raise these ghosts in the strangest ways and at the strangest times. It can create new ghosts. The changes brought into our lives by chronic illness can also make us go into hiding as we avoid talking about painful emotions, fears…depression.

If you are feeling depressed – talk about it. Now. Tomorrow. With a friend, relative, professional…with whomever you feel most safe. Just talk about it.

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

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

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

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