About msmeans

I am Carolyne Marshall - a person with relapsing-remitting multiple sclerosis. But I am much more than a person with MS - I am a mother, a friend, a sister, and a daughter. I am a meteorologist, a scientist, an artist, and an animal lover. I love to laugh, and laugh as much as I can in my life. I can be serious, and sometimes I love a good cry. I cry when I am happy; I cry when I am sad; I even cry when I am angry. I am a stand-up comedian wannabe; I am a serious researcher of life. I am an avid reader of books; a mystery lover; and a lover of antiquities, myths, legends, and lore. I am a full-fledged Canadian who will always consider Calgary, Alberta, as my home town - it is the place where I grew up, both literally and figuratively. I have lived in Vancouver, British Columbia; in Montreal, Quebec (and yes, I speak French as well as English); in Toronto, Ontario; in Calgary and Edmonton, Alberta, (where I became a bona fide country music convert); and after various moves around Canada as a meteorologist, landed in Halifax, Nova Scotia. I absolutely love every part of Canada - but there is some mysterious "je ne sais quoi" about Nova Scotia that calls to my heart and makes it my home. I am the daughter of a woman who also had multiple sclerosis. I am Carolyne Marshall - a person who has relapsing-remitting multiple sclerosis. But my MS does not have me.

MS, Synchronized Swimming, Fatigue, and Being Stubborn

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 
― Maya Angelou

Well, y’all – I did it!!! I swam in my first synchronized swimming competition in over 32 years. Yahoo! And I didn’t drown, or have a seizure, or any such thing! Hip-hip-hoorah!

Did I swim well? That depends on your perspective. From MY perspective as a near 50-ish woman with MS, a history of seizures, and thick cog-fog as a result of a very inconveniently-timed MS flare-up…well, I figure I rocked it! (Add the fact that I am swimming with mostly 20-somethings, and I feel even better about my performance. Ya – I am taking any kudo I can get! LOL!)

Our recent competition (the weekend of March 1st) was our synchronized swim team’s first competition of the year – a small preparatory one, to be sure…but a competition none-the-less. I must say that I have not been as nervous as I was for this competition in a long time. Heck – I regularly facilitate day-long workshops and speak to high rollers all the time, with few nerves…but for a 3-minute synchronized swim performance I felt very nervous! (Hmm – could the tight swimsuit attire have anything to contribute to that state of nerves, d’ya think? Erg!)

I have been training very hard all year with my team, and challenging myself to push beyond any fears I may have due to my MS and its accompanying symptoms and flare-ups. It has been very challenging  - with cognitive fog (cog fog) affecting my memory and and counting abilities in variable ways throughout our training time.

My sheer stubborn-ness  and determination to persevere in reaching my goal of competing in synchronized swimming despite my MS has been key. Key aspects of being on a team such as this and doing synchronized routines is the ability to recognize patterns, counts, and memorize sequences and “moves” (figures) associated with those counts. I gotta say that when my pain and fatigue kicked in (especially true after a long work day) my ability to perform well was definitely compromised! But, being the stubborn person that I am – I persevered anyway, and kept at it – fatigue or memory issues or whatever. I see the opportunity to improve my abilities and ways to cope with the MS to achieve my goal of swimming as an effective member of the team. Never give up!

So as I began my day of competition, I had the following things on my mind:

  • How will I navigate my current MS flare-up and weakness exacerbation? It is a really inconvenient time to happen, eh?
  • IS my brain “on” today? What can I do to mitigate my cog fog issues?
  • How will I deal with the heat of the pool area while awaiting our performance spots? Will it weaken me and affect my abilities?
  • How will I manage the spread of the day and the ebb and flow of my fatigue levels, while still doing everything I need to as a member of a team doing its necessary pre-performance prep?

Competing NOW, as a person with MS, is so much different than when I competed as a teeanager!! Even so – I was excited and thrilled to have gotten here. Once I Knoxed my hair – the experience bagan to feel real and my excitement grew. (FYI: Knox keeps the hair in place in the water for the routines…and feels like a helmet!)

Knox-ing of the hair!

Knox-ing of the hair!

Knox Head and the Cat

Knox Head and the Cat

While at the pool for the competition, the heat and humidity of the pool did begin to affect me, making me feel weaker by the minute. So – I took advantage of our cold winter air and stepped out to cool off (yes – in my bathing suit). I also found a spot near a pool-side outer door to lie on the cold tiles and try to rest pre-swim so that I could perform at my best. While I didn’t worry a snippet about what others in the pool thought of someone lying on the floor like I did, I am sure I made an odd site at times indeed!

The other thing I found challenging to manage was how to warm-up for our swim events without allowing the MS fatigue caused by the warm-up to overwhelm me before the actual event itself. Synchronizing your movements with a team of seven women means  you have to move too! And usually to conserve energy before any physical event, I would rest. So that was an interesting challenge – and I still haven’t quite figured out how to best handle it. (But I am sure I will come the next even in April!)

I have included a clip from our freestyle routine to give an idea of what I’ve been up to with this team at:

Cadence Clip from Free Routine . Check it out!!

Being stubborn seems to be working for me, eh? I feel stronger and fitter than I have in years – and the synchronized swimming ability gives me a confidence and self-awareness that bouys me throughout each day, allowing me to manage and cope with my MS  much better each and every day. Even though there are days that the combination of work and training exhausts me physically and mentally, ironically it energizes me emotionally and mentally. I have taken back the water environment as my safe haven – and that is precious to me as I manage my MS.

I will keep y’all posted about my progress and how I navigate the challenges presented by my MS as I continue my adventures in synchronized swimming. Next competition: April 2014!

“It does not matter how slowly you go as long as you do not stop.” 
― Confucius

Namaste.

Carolyne

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

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

MS and Working from Home: Dream or Dread?

“If I told you I’ve worked hard to get where I’m at, I’d be lying, because I have no idea where I am right now.”
― Jarod Kintz, This Book is Not for Sale

Working from home – isn’t that the ultimate dream? When you have an illness like MS, that dream often comes with a hard edge. Not everyone is able to be an entrepreneur, and so working from home can become a challenge.

I consider myself very fortunate that I work for an organization that is open to options like working from home, especially for people with health challenges like mine. That being said, it is not always wine and roses! But it can and does work well, and allows me to retain a standard of quality of life that I treasure.

When my MS took me to a point where I could no longer do my shift-working job, I went to day work. I was lucky – I ended up in my dream job as a “front-lines” severe weather specialist dealing with various clients. Then, when my MS developed more complications, I had to leave my dream job  and began working from home. While I have always managed to find my work interesting – I know that I had to give up a part of me by leaving that dream job behind. There’s one edge.

Working from home is not for everybody. You have to consider your personal work habits and abilities. Some questions you have to consider are:

  • Does your job allow for an option of working from home? What adaptations could be nade to allow it? (For example – if you drive a truck for a living, continuing that from home is not possible. Is there another role you could play?)
  • Does it make sense for you to work from home? Or is your health situation indicating that not working is the best option? (There are a lot of things that need to go into determining that!)
  • Do you like working alone? Or do you need regular face-to-face interaction with people?
  • Are you disciplined enough to work from home? Or do you end up getting distracted from your work by kids, pets, household chores?
  • What are the benefits of working from home for you and for your manager?
  • Do you have the space/ability to work from home? What is needed? What is your company’s policy around that?

These are just a very few of the types of questions you need to ask yourself. Each situation is unique and will need thorough research and investigation for your own personal needs.

You have to be willing to address (or ignore) strange responses – even hostile reaction from colleagues. Since beginning to work from home, I have faced questions and comments such as:

  • “Oh – you are still here! I thought you had died.”
  • “Who are you sleeping with to get such perks like working from home?”
  • “You are so lucky! I wish I had MS too if I could get to work from home!”

Wow, eh? None of it was maliciously intended…but it sure comes across negatively, eh? Another hard edge.

For me, I find it interesting that there have been so many ups and downs over the 3-4 years that I have been working almost full-time from home. I am inherently an extrovert, and I thrive in an environment where I get to interact with people directly, not just over the phone, but face to face. After my seizures began, I worked from home full time (M-F) but I found myself going a bit batty – I need interaction with people. And for professional purposes, it is always helpful for people to actually see you – otherwise you can kinda get “forgotten”. The “Outta sight, outta mind” mentality easily develops in colleagues and managers alike! I now go into the office 1-2 times per week (even though it does fatigue me greatly) in order to maintain strong professional connections and give myself that boost of interacting with people directly. (Hallway chats go a long way to help one feel connected!)

Working on your own can be a challenge for some in terms of getting work done. What I myself find is that I am actually way more productive working from home than at the office. There are fewer distractions for me, and I can focus and complete things more easily. Sometimes, if I have had a really difficult night or day, I can sleep right up to 8AM and start working the moment I wake up. If I am having a symptom flare-up, I can rest or nap, then approach my work again once rested – with a clearer head and much higher productivity: win-win for me and my manager. I have also developed a very open and honest relationship with my managers that allows for this success. (And I even get to wear my jammies all day if I wanted to!!)

Working from home is a not always a choice – but if it is an option for you, it needs significant thought and work ta actually make it successful. It needs honesty, trust, and a willingness on both sides (yours and your managers) to make it a successful arrangement. It takes teamwork.

“Working from home meant we could vary snack and coffee breaks, change our desks or view, goof off, drink on the job, even spend the day in pajamas, and often meet to gossip or share ideas. On the other hand, we bossed ourselves around, set impossible goals, and demanded longer hours than office jobs usually entail. It was the ultimate “flextime,” in that it depended on how flexible we felt each day, given deadlines, distractions, and workaholic crescendos.” ~Diane Ackerman, One Hundred Names for Love: A Stroke, A Marriage, and the Language of Healing, 2011

Working from home as a health management technique can work well – you just have to find the way that is most beneficial for you.

Namaste.

Carolyne

Stress, Swimming, Change and other Stuff

“Everyone thinks of changing the world, but no one thinks of changing himself.” ~Leo Tolstoy

I saw this picture online at the noted link, and it resonated with me in a very deep way. Why? Because of stress.

Stress, you question? Why would this picture move my mind to think of stress? It doesn’t – it reminds me that stress can become so “normal” that it can become a way of life that we don’t even recognize. It reminds me that there is more to life than stress – such as pure joy.

This picture reminds me that we need to always seek ways to let go of stress. For me – nature and water are typically stress reducers.

Stress isn’t always bad. In small doses, it can help us perform under pressure and motivate us to do our best. But for those of us with MS, symptoms can often be exacerbated by our own action or inaction in dealing with stress.

Personally, I seem to have a really bad habit of finding myself in situations of spiraling stress. Sometimes (too often, actually)  it takes a medical crash to make me wake up to the levels of stress with which i have been living. But I must say that as I get older and gain more experience with my personal MS course, I am slowly learning to start to recognize my stress levels sooner – and take mitigating action sooner where I can. I am learning to adapt and change.

This can be really tough when I am working full-time, trying to manage my MS symptoms, and trying to fulfill some goals. What I am learning now is to understand where the “stress line” for me – the line or edge that, if I go past it, will inevitably lead to a medical crash of some sort – whether it is seizures or multiple MS flare-ups. Often – the stress can be a product of my own making, truth be told. For example – when I take on too much at work, because I am trying to prove myself or ensure my professional value. I can end up cutting myself off at the knees because my body wears out, leading to a crash, and I don’t succeed as I expect. Or by trying to fulfill a goal such as swimming competitively in synchro with a team again, and pushing myself to reach my goal, even if it may not be the best fit.

The importance of being able to pull back, look at the bigger picture, see where the stressors are, and figuring out how to let go of the stressors that you can control…well, that is a special art, as far as I am concerned. And one that needs significant time to master! And I am in no way close to mastering this art myself, that is for sure! Though I am getting better at identifying the source of the stressors. Some I can control; some I can’t – it is situation dependent. The stress sources that I can control – well, I have to figure out how to lessen impacts on my health. That can take the form of pulling out of a project; adapting a routine, and/or removing oneself from toxic situations or people.

Finding the courage to follow through, however, can be a b@%ch, I can assure you! (This seems especially true of those of us who are over-achievers because we tend to not want to give things up easily!)

Obviously, we can’t get rid of stress completely. This is especially true  when you have a disease like MS - because the very nature of an unpredictable illness like MS means there is always a basic level of stress that will be present. The constant changes that can come with MS, such as not knowing from one day to the next what part of you may or may not be working as you expect, can create a constant low “stress buzz” that niggles at the back of your mind for various reasons. That’s why having a stress-mitigating tool – such as exercise, yoga, or meditation – becomes ever so important for us.

For me – those tools come in the forms of swimming, walking, yoga, crafts, and good friends. I can’t change everything – but I can change myself. I can adapt. I can let go of the stress…or at least some of it!

“If there is no struggle, there is no progress.” ~ Frederick Douglass

Namaste

Carolyne

MS Brain Fog – huh, what?

“They are able who think they are able.” ~ Virgil

“Huh? What?”

Sometimes that seems to be a phrase I say way too often.

Now – I consider myself very lucky in my MS – because, while I have some serious symptoms such as seizures, chronic pain, and chronic fatigue, I am still quite physcally able. That said, I do have cognitive issues as a result of MS that affect considerably how I live, adapt, work. For me (and many MS’ers) – MS manifests iteself in a way that is mostly invisible to the every day eye looking in from outside.

Many of us with MS experience some form of cognitive issue. The National MS Society reports the following:

In MS, certain functions are more likely to be affected than others:

  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Information processing (dealing with information gathered by the five senses)
  • Executive functions (planning and prioritizing)
  • Visuospatial functions (visual perception and constructional abilities)
  • Verbal fluency (word-finding)

Certain functions are likely to remain intact:

  • General intellect 
  • Long-term (remote) memory
  • Conversational skill
  • Reading comprehension

I see the top list and find myself checking off each symptom on the list. (Check. Check. Check….Erg.) Then I get to the second part and think “Thank gawd – I still may have some basic marbles left!”

I myself am always re-evaluating, re-discovering, and re-analysing my own cognitive issues. I say “re” because short-term memory is an issue…so I often re-do things and re-discover what I knew before. Add in menopausal mayhem, middle-aging memory slumps, and multi-tasking mash-ups…and, well – you get the picture. And is there any real point to trying to figure out if it is due to the proverbial MS Chicken or menopausal Egg? Really, MS may have come first…but at this point, I think the “cause” edges may be getting increasingly blurry! (I think of the information processing issue: yes, I do definitely deal with MS repercssions of that…but as I age, I think menopausal fall-out happens too! Hormones strike again!) I just have more trouble, well, simply thinking.

Most recently, one of the things that I am finding more challenging than I expected was the challenge of associating figures to counts in the synchronized swimming world.  I have lived with the physical and cognitive repercussions from full-on grand mal seizures in the past (ie. severe concussion and associated memory loss for weeks, cracked ribs, wicked bruising, etc)  and the on-going up and down cognitive levels associated with my MS (i.e. inabiity to do basic math or remember what I am talking about mid-sentence on one day, then “geniosity” levels the next day). But I figured that simply counting to eight musically and associating routine elements would not be too problematic. Ha.

What is happening is that physically, while synchro swimming is definitely a challenge, I am able to master most elements. The biggest challenge is happening mentally – because of cognitive issues around numbers and short-term memory issues. Basically – all the symptoms from the top list is happening – blatantly and obviously. In synchro, while developing a routine there is a lot of trial and error: “Let’s try this; let’s see if this works”. This means that the need for short-term memory becomes critical. And MS can make this very difficult.

As an example – on a recent practice, we were developing another segment of the routine. Then we did a full run through. I did the entire routine just fine until we got the the newly developed part – then I totally blanked! ACK! Now, the more I practice, more and more of the routine sticks in my head. But the most recent sections always lag behind at least 1-2 weeks, memory-wise. This can be a huge frustration – not only for me, but for the people around me (especially if they do not understand why I am havng trouble remembering things). The phrase “Huh? What?” is something that I find myself saying much too often during practice!

But while it can be frustrating and challenging to push again cognitive issues – I am doing it. Do I need to adapt? Yup. In synchro, it means that  I need to do more repetition than the rest of the team. I need to repeat more things more often. I need to write things down more.

In the rest of my life, I need to take more time to fully be sure I understand. In speaking – I need cue cards because I have much more difficulty “winging it” than before. I need more and more lists for everyday things like shopping and regular daily tasks. I need frequent reminders – and I use more and more tools to do exactly that.

I seek out whatever tool and trick that I can to help with whatever new cognitive issue that pops up. And I adapt every day – because every day changes.

Um…Where was I going with this again…?

“The future is completely open, and we are writing it moment to moment.” -Pema Chodron

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

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!

And they said it would never happen!

“Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.” ~ Orison Swett Marden

Roughly five years ago,  I had a seizure while driving and totalled my car. (Luckily only myself and my dog were hurt! See my seizure story at http://msmeans.wordpress.com/ms-seizures/ ) I was told by doctors that I would likely never drive again due to the development of uncontrolled tonic-clonic (grand mal) seizures. While considered a rarity in MS patients, seizures ARE a possibility and even a reality for many of us. Fast forward to the present – and now, as of the July 2013,  I am able to drive again! (Though I do have some medical restrictions that I must follow.) Through the miracle of medication and persistence at finding a balance in managing my health – I can safely get behind the wheel of a car.

FREEDOM!!!!

As any of my followers know, I don’t like being told that I cannot do something. I don’t like being labeled or hemmed into any perceived “box”. And I certainly don’t like feeling trapped in any way by my own body. And not being allowed to drive for almost 5 years certainly made me feel trapped in many ways!

But – as they say “Never say never!”

Even if I don’t drive much at all in the future, just knowing that I can drive gives me so much joy, I cannot even find the words to express it. I feel all grow’d-up an’ everything!!!

Action is the foundational key to all success. ~ Pablo Picasso.

namaste

Carolyne