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

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

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

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

The Beauty of the BUT

No one saves us but ourselves. No one can and no one may. We ourselves must walk the path.” ~ Buddha

Have you ever noticed how the word “but” can can change the meaning and context of communication and self-talk in subtle but distinct ways?

“I’m sorry – but it’s not really my fault!” – redirecting accountability

“I know this isn’t good for me – but it’s just this once.” – rationalizing

But’ can be a powerful word for such a small one. Often, using ‘but’ contradicts  or rationalizes the intent and context the speaker. However it also can affect the expectations of the listener.

I was on my yoga mat the other day thinking about this, after my lovely teacher Kim (ALL Yoga) spent some one-on-one time with me to bring me back to the simple joy of yoga – all forms of yoga. In trying to settle my mind during my practice and especially savasana, the word “but” kept floating in. “I  should spend more time on my mat, … but I am so busy at work; but I have so much to do around here; but my friends or family need me to do this or that.” “I’d try that, but I am not sure I can do it successfully.” But, but, BUT.

But can stop you from moving forward…as you rationalize you way into and out of scenarios. When challenged with chronic illness, the word but can become the crutch that stops us from trying new things, keeping up with the old, or moving out of the current comfortable (or not so comfortable) “status quo”. Sometimes this is good…however sometimes, we need to stop using “but” in order to change.

Did you know that the word “but” as is, in French, is pronounced more like “boo” (with more nasal intones) and means “goal”?

So you know what I decided to do? I decided to use the word “but” in the context of “goal”.  As in: “I know I have challenges to face. But I know I can overcome them.”

Mon but dans la vie est de prendre bien soin de ma santé , de ma famille, et de mes amis.

How’s your “but” doing?

“Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.” ~ Jamie Paolinetti 

Namaste

Carolyne

On My Mat: Life’s Journey is Not about a River in Egypt

Tell a man there are 300 billion stars in the universe and he’ll believe you.  Tell him a bench has wet paint on it and he’ll have to touch it to be sure.  ~Murphy’s Law

I have traveled the river of denial (get it..de-Nile…ok, bad joke) a few times on my journey through life. One of the reasons that I love this artwork above (not only because it is a beautiful work of art from my son’s lovely girlfriend of which you can see more at http://www.facebook.com/caitsart ) but because of the emotions and awareness that it evokes in me. I love, love, love this piece of simple evocative art.

When I look at this picture, I see myself. I see my friends. I see my family. I see the strangers around me. What do I see? I see the highly personal and individual struggle we all travel on our own life journeys. Sometimes that struggle can cause us to deny what we see in front of us, hide our faces…and peek out between our fingers only when we think it is safe again.

As I was lying in the bliss of savasana one day on my mat, happy to have realigned my body, and I began noting thoughts about denial and what it means. I, for one, can be really good at denial – though as I have aged (and theoretically gained vast amounts of wisdom) I have learned that facing the scary parts full on is really the best way I have found to handle anything. Denial usually comes as a result of fear – and our own unwillingness to face that fear. Hence – we develop our own states of denial. (It’s kinda like putting your hands over your eyes when you don’t want to see something, or your hands over your ears if you don’t want to hear something.)

Here is an excerpt from Dr. Sanity about denial and what it is (Dr.Sanity Blogspot):

Denial may be conceptualized as an attempt to reject unacceptable feelings, needs, thoughts, wishes–or even a painful external reality that alters the perception of ourselves. This psychological defense mechanism protects us temporarily from:
-Knowledge (things we don’t want to know)
-Insight or awareness that threatens our self-esteem; or our mental or physical health; or our security (things we don’t want to think about)
-Unacceptable feelings (things we don’t want to feel)

I have learned over time that the moment I recognise that I feel fear (of anything) is the very moment that I have to take the hands off my eyes, turn around, and face that fear head on. If I don’t, then all I am doing is denying the existence of my fear, and of the source of that fear.

When it comes to dealing with a chronic illness, this applies too. For some of us, our chronic illnesses can be a constant source of fear and denial. How many of us deny symptoms; hope symptoms will go away on their own; just take the doc’s word at face value – with no questioning? I know I did, and sometimes still do! (I often call it pure stubborn-ness – but really, it can often boil down to simple denial…ok, I am facing that. :)

“Facts sometimes have a strange and bizarre power that makes their inherent truth seem unbelievable.” ~ Werner Herzog

Namaste

Carolyne

Riding the Emotional Roller Coaster!

I’m not afraid to write my feelings in songs. ~ Taylor Swift

Image Source: Wakeuptiger.blogspot.ca
http://wakeuptiger.blogspot.ca/2012/03/feelings.html

Thanks to adjustments in my seizure meds, I have been riding the emotional lability roller coaster lately (so to speak). Emotional lability – sounds…weird, right?

Here is a dictionary definition:
emotional lability – a condition of excessive emotional reactions and frequent mood changes.

Sounds almost benign, eh? Well here is a description that is a little more apt:
The symptoms of emotional lability might vary among individuals and in frequency of occurrence. Fits of laughter or crying jags are two examples. Some people do evidence this most with explosive tempers, and there can be instances where people will experience all three emotionally excessive expressions at varied times. When these expressions occur, it’s often daunting for the people undergoing them because many people know that their emotional response is in excess to the circumstances. It can even get embarrassing for some individuals or be a condition that makes them withdraw socially. (source: http://www.wisegeek.com/what-is-emotional-lability.htm)

So what bring this on? It can be a symptom of degenerative brain disorders like multiple sclerosis. It can also be a side effect of some medications.

In my case, it seems to be a bit of both going on – MS-fatigue induced lability, as well as Seizure Med induced labaility! Erg.

In recent weeks I have become more weepy off and on, with the weepiness triggered by …well, sometimes absolutely nothing, …and at other times, triggered by stuff that should either make me furious or make me just go “awe…how sweet”!

In order to sort it out, I have taken a bit of time off work (doc ordered), because the high stress at work from the effects of cutbacks and such has become quite toxic. So, once off work, the stress lessened, especially as my sleep increased significantly…but the crying continued! Ack! This time, the crying was happy crying, from Mother’s day and such. But the waterworks would not turn off! (Very frustrating to me, but highly amusing to my family!)

As I have gotten more sleep with long afternoon naps, I have become much more tear-free. Go figure, eh? It would seem that somewhere along the way, I put my need to seriously manage my MS fatigue level to the bottom of my priority list…and my body responded this time not by dropping me with a serious seizure, but by making my emotions rise to the surface in the form of weepiness! Somewhere along the way I had forgotten the importance of me taking the rest I need when I need it – and, ironically, the privilege of being accommodated for working from home was making me feel guilty for taking that rest. Stupid, eh?

You see, one of my seizure meds has a known side effect of weepiness and crying. While I had managed to keep it under control for a while, the change in meds, combined with the very high stress at work, and my growing deep fatigue, seemed to have led to the teary times being more than I could manage.  And while one doc wants to put me on an anti-depressant to counter the side effect of the other med, another doc on my team wants me to stay off antidepressants, and lower the seizure drug dose, while upping a different seizure drug.

Talk about russian roullette, eh?? But the positive in all of this? I have not had a siezure in over a year now – despite the high stress! Given that high stress (psitive or negative stress) seemed to be a possible trigger for my seizure, this lack of seizures to date hopefully means that the seizure meds are working.

So, in the scheme of things…what’s a few tears here and there, eh??

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” ~ Alan Watts

Namaste

Carolyne

PS – This Bruno Mars’ video says it all…

Back in the Saddle: Keeping Life Balance Despite the Challenges

“Never too old, never too bad, never too late, never too sick to start from scratch once again.” -Bikram Choudhury

Sometimes, the stresses of life can throw you off balance in unexpected ways! I myself have been “off my game” for the past few weeks, basically suffering from “home-office-presenteeism-itis”. What does THAT mean? It means that sometimes the stresses associated with working at home (as per my health accommodations) can take up residence in the sanctuary of my home and continue the stress that normally I would LEAVE at work. That is the tricky part of working at home as a way to accommodate your health – figuring out how to keep them separate, while still being passionate about your hobbies and other life-balance tools. And no matter what – your health factors in as a very high priority issue!

You see, my home office includes my official work station, but it also includes my personal connection station to the world (including this blog, etc). In recent weeks, the stress at work due to cutbacks has become so high and so toxic that is has leaked into my home sanctuary. In order to deal with the stress of the office, I closed my door by the end of the day on Fridays, and just could not face even the idea of going back into that room until the following Monday. I spent my weekends recovering from the stress and the toll it took on my MS and overall health, including the worry that the stress load could trigger a major seizure event. (Thankfully, so far so good – no seizure!) Good strategy, right?

Yes and no.

What that shutting of the door meant was that I was shutting out the workplace stress. But the secondary effect was that I could not muster up the desire to come in and sit down to write my blog – which a positive tool in my life. It meant that part of my coping mechanism for managing my health became “inaccessible” to me – because I just needed to be away from the “work” part. I worried that I might become a full-on practitioner of presentee-ism in my blog if I chose to write when I could not stomach the idea of being in the office area. What is presentee-ism? Lemme tell you…here is a definition:

Presentee-ism: When employees come to work not mentally present due to an illness, extreme family/life pressures or stress, they are not giving themselves adequate time to get better.

While I do not consider my blogging a chore in any way, the thought of being in my office over the weekend hours considering the amount of work-stress faced daily during the week was just not something I was/am willing to tolerate. I just could not stomach the idea of being in my office, my place of work, on my personal time. I needed an emotional rest on weekends away from anything work-related – because the idea of going into my office made me physically ill. But this in itself caused stress, because blogging is a joy for me – so my joy was being affected! Catch-22!

So – what to do about it? Well – I have decided I need to re-organize my time in a better way so that my joys can be protected from the toxic spillover of stresses from my workplace. Work stress is a fact of life. Chronic Illness such as MS is exacerbated by stress – and boy, have I felt that in recent weeks. Establishing a balance is critical, especially at these times of extreme work stress – working from home can make that balance even more of a challenge to find, and even more of a challenge to maintain!

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” -Mary Anne Radmacher

So – I will keep trying to find the balance, and keep on blogging about this and other life challenges and successes. Life is a series of ups and downs…and there is ALWAYS something to learn!

Namaste

Carolyne

Seeing Through the Loneliness

Remember we’re all in this alone. ~ Lily Tomlin

Recently, someone asked me to write more about the loneliness that can come with living with a chronic illness. Whew – that’s a tough subject, eh?

Loneliness is more of an emotional state consisting of a hollow emptiness and profound unhappiness. It is not a voluntary condition like solitude might be. Loneliness can affect us all at different times, in different ways – whether it’s a fleeting feeling or a constant state of disconnection or isolation. For people with chronic illness, this can sometimes play a significant role in managing their lives.

Unfortunately, the reality of managing a chronic illness is that sometimes you have to make decisions about what you can handle physically at times – decisions that sometimes conflict with family functions (such as Easter Celebrations), or social functions, or physical challenges. Sometimes this can be a really bitter pill to swallow – especially if you have prepared ahead of time the best way you could, and your health takes a different turn, forcing you to cancel plans. At times like that, loneliness can hit like a sledge hammer, especially if you are possibly bed-ridden or otherwise hampered from your usual activities,

It is difficult to experience loneliness, and all the emotions it comes with. At times like that, it is very important to be kind to yourself; be gentle with yourself. Do things that get you to feel more “connected”, such as social media like Facebook or Twitter – it make all the difference in the world when it comes to dealing with loneliness.

Sometimes, no matter how much a person tries to cope, there is the need to speak with a professional. A counselor can help you manage negative emotions that seem to be a part and parcel of loneliness.

Personally – I find I crave solitude at times, but sometimes even the solitude can trigger bouts of loneliness. I find though that those bouts of loneliness are usually triggered by periods of forced solitude (such as an empty nest scenario) combined with deep fatigue or pain caused by my illness. As long as I keep my non-attachment perspective and can see the loneliness for what it really is, I am able to see the light at the end of the tunnel.

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being. It is, after all, one heart touching another heart. ~ Roberta Sage Hamilton

Remember – you are never truly alone. Just reach out. Reach out to family, friends, bloggers. Find the courage within yourself – it could be the biggest, most courageous step you will ever make. Reach out and touch another heart. They may be just as lonely as you – and suddenly, two feels less lonely, three feels even less lonely…

Namaste.

Carolyne

The Summer of Challenges – Facing Fears and Pushing Boundaries

The scariest moment is always just before you start. ~ Stephen King

This spring and summer I will be facing some fears, adjusting to changes, and pushing my own limits. I decided it was time – because I was noticing that I was falling into a fear-based place that I was increasingly uncomfortable with.

The persistent one was about getting on a bicycle again for the first time in years. Not scary for most of us, right? For me – it came about due to my inability to drive anymore due to my seizures, and the docs’ recommendations to stay on quiet streets if I decide to get on a bike again. Not being able to drive any more has often left me feeling somewhat trapped – and that was exacerbated in recent weeks when our local transit service went on strike for a number of weeks. So, recently, when I reached a breaking point of “trapped-ness” I bought a bike  that I found on sale at a local store. I decided it only made sense to ride it back home, especially since I was contemplating joining an MS Bike team at work.

What a fiasco! I more or less walked my new pretty bike home with spurts of riding it…with periods of breathing that sounded like I was coughing up a cow!! Bikes have really changed since I was last on one, and just getting used to the gearing was a challenge. But I made it home…and promptly collapsed on the couch – marvelling that I had not killed myself! My butt was aching and sore – so apparently all those years of biking in high school and university didn’t “keep”! Go figure, eh? And muscles that I forgot I even had were screaming at me. But I loved the rush of success. I did it – maybe not stellarly – but I did it. And the success of it has stuck – so I committed to riding with the MS Bike tour team at work. (Oy – this should be too funny over the next weeks as I “train”…I’ll bring my camera!)

The experience reminded me of a lesson I learned long ago: Feel the fear, and do it anyway!

So I am committing myself to a number of fundraising challenges this spring and summer, including the MS walk and MS Bike tour, as well as a couple of others (like the Blue Nose Walk/Run with the team at All Yoga .)

“Only those who will risk going too far can possibly find out how far one can go.”T.S. Eliot

Namaste

Carolyne