Happy 2014! Time to re-assess and re-new!

“January 1st is the first blank page of a 365 page book. Write a good one.”
― Brad Paisley

Well, another new year is upon us. Wow – 2014…already?? How time flies… Time for a new 365 page “Book of 2014″, as Brad says.

I have always felt that this time of year is a good time to reflect, re-assess, and renew. It can take the shape of re-organizing a closet or a cupboard, to renewing a commitment, to re-assessing a goal or two.

I have to say that 2013 has not been my favorite year – but I plan to make 2014 a better one! You see, 2013 had me bouncing around a bit too much in terms of medication side effects, changes in my health, and menopausal symptoms and MS symptom flares and … well, you get the picture. Confusion was the Word of the Year for 2013 for me. (Though hindsight is as clear as a bell!) And I spent much of 2013 crying all the time – for no reason! I just would cry for no understandable reason…which turned out to be medication and symptoms side effects.  Between my seizure meds causing serious anxiety symptom side effects for months, and menopause bringing me a new meaning to the phrase “hot and sweaty” (dripping…OMG), I have found the process of aging gracefully to be a bit of a challenge in 2013. (I mean, c’mon, Mother Nature: whiskers, acne, return of bad cramps, and sleep deprivation? Seriously? Erg.) So 2013 was a very soggy year for me.

So I decided to look as what needs re-jigging for 2014.

One of my top personal goals for 2014 continues to be competing in Synchronized swimming by my 50th birthday. Since I am currently swimming with a team, this one is working well so far. Keeping up with a group of 20-somethings is tough, but I am doing it. It is not so much the physical part as the mental parts that are the biggest challenge. Remembering counts of music and how the routine’s choreography goes can be more challenging some days, and less so others…depends on my MS cog fog levels! But, so far, so good – MS brain farts and all!

Another of my top 2014 goals is to help people more…by blogging, by volunteering, by talking, by sharing and raising awareness of MS symptoms like seizures, and of living a full life no matter what. I currently guest blog at MSRelief.com, and I volunteer my time with the local university Health mentoring program, as well as other volunteering for the MS society and other local health societies. Where ese can I help?

And over all of this – my priority goal is to manage my health well and maintain a quality life balance for myself and my family while I fulfill my personal goals. But as you know by now, I am not one to go slow or go small, eh?

My wish for you all, as you write your own 365 page Book of 2014 is for a great quality of life, good health, and personal balance.

If I shoot at the sun, I may hit a star. —P. T. Barnum

namaste.

Carolyne

Me & my MS: Finding “Normal” … Again

Nobody realizes that some people expend tremendous energy merely to be normal. ~ Albert Camus

What is Normal? When you have a chronic illness such as MS, does the definition change?

Someone recenty commented that I was trying too hard to be normal. So I have been having a philosophical discussion with myself in recent weeks about what I consider my own “normal”. What is normal anyway? Is it a behaviour? A way of speaking? A way of interacting? Is it skin colour? Is it clothing choice? Is it education? What is “normal”? More importantly…what is MY normal?

My answer? Normal is a very individual thing.

My own “normal” has undergone a reformation and reshaping this year…so I am trying to figure out what that normal is now. In the past year I have moved, gotten re-married, started full-on menopause with its roller coaster ride of crazy symptoms, found myself unchallenged at somethings and over-challenged in others, dealt with the ups/downs/and sideways issues of having 2 kids in university, and thrown myself heart and soul into my personal cause of swimming against stigma (by swimming competitively in synchronized swimming after 30 years out of it). So…where does normal come into this equation?

As I have aged and managed my life with MS, I have never strived to be “normal” – because that definition is elusive, as far as I am concerned. I have always strived to be “normal for me”. And what is normal for me? How can I figure that out if the parameters keep changing on me, as is the wont of MS and its symptoms?

Normal for me means dealing with change and adapting on a monthly, daily, and even hourly basis. It means pulling back when I need to, and pushing forward hard when I can. It means heeding the advice of those around me when I can, and knowing when to ignore it, listening to only my own advice to myself. Normal for me means pushing the boundaries; seeing where the edge is and if I can push past it. It means facing my fears and doing it anyway. It means breaking stigmas against MS, seizure disorders, and chronic illness as a whole.

My normal from 30 years ago differs from my normal of 15 years ago, and from my normal of 5 years ago, or even 1 year ago. What was the overlying common denominator in all of that? It was my resilience and ability to deal with change. THAT is my normal.

I re-discover my normal on a regular basis. Right now – my temporary normal is figuring out what my new normal is with my new activities such as swimming and trying to be back in the office more often than before. Is it hard work? Yep- Very hard work. Is it worth the frustration, confusion, and sometime even pain? Yep. For me – that is just a normal part of the process.

What is your normal?

Normal is not something to aspire to, it’s something to get away from. ~ Jodie Foster

Namaste

Carolyne

Push through! Push through! You can do it.

Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. ~ Thomas Jefferson

As many of you know, I manage my MS by maintaining a strong exercise program – which includes swimming, walking, and yoga. This daily exercise routine is necessary to manage my fatigue and pain levels. Too much lying around causes my leg pain to skyrocket, and makes me more fatigued and less mobile. Two days of inactivity can cause painful immobility – and I really don’t like it, so hence I maintain as high a level of physical activity as possible. Luckily, my earlier years as a synchronized swimmer, lifeguard team member, waterpolo player and weight training enthusiast have given me a “push through the pain” discipline and mentality that serves me well now when I need it for my own survival.

Even so, MS remains confusing to manage and pisses me off sometimes (ok – lots of times).  I can push myself very hard while swimming and maintain amazing cardio benefits as a result. I can do hot yoga and regulate my breathing and maintain flexibility. But push myself a bit hard on a warm sunny day? …that’s another story all together. Hubby and I hiked around the Dingle Tower park here in Halifax recently on a beautiful sunny summer day, then we climbed to the top of the historic tower. It is just a few stories high…straight up wrought iron stairways. No problem, right? I mean – I am fit, and have cardio benefits to burn, right? Well, I get to the top…and the world starts to go grey at the edges and I feel myself about to faint…so I drop immediately and spend 15 minutes on the floor to prevent a full-on faint. All this brought on by being overheated and my MS flaring up, saying: “Nope – don’t like it. I am gonna take you down.”

It made me angry to feel weak and vulnerable. It made me angry to feel “bested” by my own body – despite all my efforts to maintain a good balance. So – that stubborn streak came out yet again. Because I recognized what was happening, I was abe to prevent a full-on faint by resting at the top of the tower, allowing the breezes to cool me rapidly. Once I felt cooler and stronger, I got back up – and I climbed down those stairs on my own, shaky legs and all. And lucky hubby – he did not have to carry me down the tower stairs! Though he chivalrously walked in front of me so he could catch me if I fell. (That man is wonderful – and so patient with my stubbornness! )

To me – it is that “push through the pain” mentality that allows me to push the boundaries of my own body like that – beyond my MS; beyond my fear of having a seizure. I don’t like feeling held back – and I will try to do whatever I can to succeed at my goal. Do I always succeed? Heck, no – we all know that by now. But to me, trying is the most important part – it means I am alive and moving forward. Sheer stubbornness helps too!

Respect your efforts, respect yourself. Self-respect leads to self-discipline. When you have both firmly under your belt, that’s real power. ~ Clint Eastwood

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

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

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

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

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