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

When the Best-Laid Plans Fall…

“Don’t count every hour in the day, make every hour in the day count.” -Unknown

Isn’t it just the way that when you think you have planned for everything, accommodated your health in all forseeable ways, something changes your best-laid plans?

This December, I did my best to make sure my life was as balanced as possible as I wanted to maximize my ability to enjoy the season and keep active. I kept my workload (while high) manageable by setting boundaries and “rules” regarding my cellphone, email, and travel. I planned very carefully around a late December business trip to Ottawa-Gatineau, fully determined to ensure maximum health accommodation so that there would be minimal health fall-out. I used my cane in the airports as docs suggested, exercised at the hotel every evening (cardio then yoga) and took the mornings a bit slower before my meetings, ensuring maximum stress management. I made sure my holiday prep and shopping was done slowly over the course of December. I ensured minimal commitment to functions in order to give my health the play it might need. But even so, by Boxing Day, I found myself pretty well bed-ridden, dealing with some of the worst days of “brain bursts of sensation and light” and spinning vertigo in a long time.

So – what happened? Well, for one thing, turbulence happened. Turbulence in the air, specifically. I am rapidly discovering that flying during winter months can throw a significant wrench into things for me. I don’t really know if it is as a result of the severe concussion damage I still have from my first seizure episode a few years age, or from the temporal lobe (same one) lesion/tumour which triggers my seizures, or if it simply a matter of medication and/or menopause that just does not function well in a pressurized cabin with turbulence. Or – was it a case of seizures trying to happen, but meds not letting it? I dunno…No matter what the cause – it blind-sided me and changed my plans.

My plans to come home from my business in Ottawa and write a personal pre-holiday season blog were blown away – replaced by a foggy and slightly woozy brain. My plans to do yoga and get some extra cardio in so I could indulge were blown away – replaced by the need to ensure my own personal safety by not jumping on a moving treadmill nor moving my body into yoga positions that put my balance and spinal safety at risk. (Even simply moving forward at a rate faster than a tortoise sends my brain spinning!)

After a sufficient period of self-pity, where I whined and bemoaned my plight of being, for all intents and purposes, physically immobilized by my brain, I flipped into my usually optimism and looked at it for what it was – another learning opportunity.

I learned that winter air travel can really sucker-punch my brain by making things a bit woozy and “squishy” in there. I learned that sometimes it can be a blessing to lie in bed with a TV remote and watch Discovery Channel marathons, or Ancient Aliens, or other fun things. I learned that deadlines can be missed and the world keeps on trucking. And I learned that I really hate being foggy and dizzy! (Well, I already knew that one.)

I learned that the best laid plans can go awry, no matter how well laid out, but that the world continues to move forward, and it usually all turns out just fine.

Happy Holidays!

Gifts of time and love are surely the basic ingredients of a truly merry Christmas.  ~Peg Bracken

Namaste

Carolyne

Seeing the Light at the End of the Tunnel: Builiding your Resilience

“Continuous effort—not strength or intelligence—is the key to unlocking our potential.” ~Winston Churchill

http://www.babaloud.com/2011/05/amazing-inspirational-quotes/amazing-inspirational-quotes-16/(Photo Credit: http://www.babaloud.com)

Sometimes it can be tough to see the light at the end of the tunnel. That’s where personal resilience comes in. Resilience can help you know that even if you can’t see the light right now, you are confident that you will at some point.

If you google resilience, a Wiki definition comes up for resilience as:

Resilience in psychology refers to the idea of an individual’s tendency to cope with stress and adversity. This coping may result in the individual “bouncing back” to a previous state of normal functioning, or using the experience of exposure to adversity to produce a “steeling effect” and function better than expected (much like an inoculation gives one the capacity to cope well with future exposure to disease).[1] Resilience is most commonly understood as a process, and not a trait of an individual.[2]

Resilience is different for every person. When dealing with a chronic illness, resilience can mean the difference between life and death sometimes, or so it would seem when you feel like you have hit rock bottom. Resilience is what helps you find the strength to get back up one more time, try again once more, reach for the rope that you know is somewhere just out of sight.

Sometimes, people surprise me by saying to me: “How do you cope with it all? Shouldn’t you be a basket case by now? Why do you keep pushing forward? How do you do it?”

Honestly – I could not tell you the details of how I bounce back all the time, for the most part. Statistics often can say that a person who has dealt with multiple childhood traumas and multiple health issues should be having a really tough times surviving and living a good life. I just know that I do bounce back – to me there is no other logical choice but to keep trying, no matter what life throws at me. When you are down, rest, but look for the silver lining somewhere – no matter how small. Baby steps at times; sometimes, big leaps of faith.

My youngest son noticed this “bounce back” ability and surprised me one day by saying “Mom, no matter what happens, you are always happy and positive. Most people aren’t happy – but you always are. You are a very positive person. That’s interesting.” He noted it because he found it interesting that he does not think the same way as me, but that his older brother does more so, in terms of positivity and jumping in with both feet. (Both of my sons are absolutely brilliant, but my youngest is particularly deep, and often sees things in life in a very unique and clear way. He fascinates me!)

So how does one build resilience, if it is not instictive? Here are some tips…(reference source: Mayo Clinic)

  • Get connected. Building strong, positive relationships and support networks. Do volunteer work, get involved in your community, or join a spiritual community.
  • Make every day meaningful. Do something that gives you a sense of accomplishment and purpose every day. Set goals to help you look toward the future with meaning.
  • Learn from past experience. Think back on how you’ve coped with hardships in the past. Consider the skills and strategies that helped you through rough times.
  • Stay hopeful. You can’t change what’s happened in the past, but you can always look toward the future. Accepting and even anticipating change makes it easier to adapt and view new challenges with less anxiety.
  • Take care of yourself. Exercise daily. Get plenty of sleep. Eat a healthy diet. Practice stress management and relaxation techniques, such as yoga, meditation, deep breathing or prayer.
  • Take personal control – Be proactive!  Don’t ignore your problems or try to wish them away. Instead, figure out what needs to be done, make a plan and take action. Although it can take time to recover from a major setback, traumatic event or loss, know that your situation can improve if you actively work at it. This is one of the biggest keys to building your resilience, because perceived control is critical.

Once of the biggest helps to build your resilience is your perception of control in your own life. That’s where changing your perception to be proactive, and take control of the things you can, can make all the difference in the world. There are many things in life that are totally out of control – but take control where ever you can to help improve your situation in some small way. Many small steps eventually get you down the road, too.

“Act as if what you do makes a difference. It does.” -William James

namaste y’all!

Carolyne

Related Posts: “The Value of taking Time for Laughter and Rest”

Overwhelmed by Stress: How to Re-establish your Balance

“Don’t let your mind bully your body into believing it must carry the burden of its worries.” ~Astrid Alauda

Have you ever felt an incredible weight of the world on your shoulders, spinning out of hand? Or a nagging feeling that you just can’t get anything done to your own satisfaction, and you just don’t know why? Have you ever found yourself feeling like you just have to get away from everything before you say something you’ll regret? Or over-reacted to simple things that would normally never bother you? That behind the calm facade there are monsters are lurking?

I sure have. As a recognizable type-A go-getter, it is something that I have battled for years, with various levels of success. Most recently, I have been feeling more and more overwhelmed, at times literally paralyzed by decisions I must make at work (What is our strategic plan?); choices I must make at home (Mom – what’s for dinner?); or even trying to get out and socialize (Hey – you up for a girls’ night or some yoga?). The past couple of weeks, I have been dealing with difficult technical breakdowns that have delayed significantly my ability to work efficiently. I also was told that I have abnormal sleep test results and was scheduled for the soonest possible appointment at the hospital’s sleep disorder clinic because I have a “severe category” sleep disorder. I had a wicked MS exacerbation, complete with pain and fatigue to the level of stupid. My darling Mike had personal crisis of his own. And I have had to travel for work. All while trying to figure out WHY I cannot beat this exhaustion.

By evening, I am so wiped, it hurts to have to talk, or put sentences together, or make any dicisions – even as simple as what to make for dinner. All this drama culminated this weekend as, after two solid days of remote systems repair efforts with work that didn’t work out, I broke down in tears by Friday afternoon because I could not get my Kobo reader to work either. Mike hugged me, and I sheepishly blamed my fatigue and tried to shrug it all off. Then Saturday, wanting a low effort comfort food dinner, I made my (usually) wonderful seafood corn chowder. My son was looking especially forward to it, and picked up crusty bread. Well – at the appointed dinner time, we were all starving, and my chowder just had not cooked in the crock pot. The potatoes were still raw!

Now normally, I would just shrug and say “ok – pizza tonite”. Not this night. This night, the chowder proved to be the proverbial straw that broke the camel’s back. I was frustrated to the point of throwing my bowl of uncooked chowder in the toilet. My son said “Wow – you are really pissed! C’mere Mom – let me give you a hug.” At that point I burst into tears and ran into my office to cry my heart out. I felt like an absolute idiot, literally crying over raw potatoes!

At that point, I recognized that I had reached my own personal critical breakdown point, and that I needed to regroup and re-balance myself before I set a health crisis in motion.

On the bright side, the sleep disorder thing explains some of the reason behind my overwhelming fatigue, brain fog, and inability to concentrate on anything for more than 5 minutes. Also – I am at a peak level of stress and fatigue, and by now, I probably would have seized – but no seizure so far…so that may mean my meds are actually working!

When the mind is on overload, it can grind to a halt and temporarily shut down, which mine had done. Once I recognized just how badly overwhelmed I had become, I could begin to make the changes necessary to regain my balance.

Tips to Re-Establish your Balance when your are Overwhelmed:

  1. Cry it out. Crying can be a great release – like the valve in a pressure cooker. Allow your tears to lessen the weight of the burdens you’ve been carrying. Accept that part of life as what it is and move past the tears to a new step.
  2. Laugh as much as you can! Seek out funny situations, happy people, or anything that makes you laugh. Watch comedy TV, or something that is light or mindlessly absorbing. Avoid any TV that could be potentially depressing or stressful. This is self-preservation and helping you to regulate your mood. (I avoid violent slasher movies!!)
  3. Give the mind a rest from the stress of everyday life for awhile. Take a “me” day, if you can. Shut off the phones, cell phones, computers. Tell your family & friends that you need some quiet time to reconnect with your inner peace. Light candles. Meditate. Do yoga. Sip your favorite tea or coffee wrapped in a blankie and read a trashy novel. Disconnect from the world. Turn your energy inward to help yourself.
  4. Surround yourself with positivity, especially when you don’t feel at all positive nor cheerful. Go to the mall and walk around, watching people enjoy themselves. Moods can be catchy!
  5. Exercise! Go after that endorphin release. Find an activity you like – swimming, running, walking, yoga, biking, dancing… the choice is yours. Sometimes, the easiest thing to do is turn on your favorite tunes and boogie your way to a smile!
  6. Above all, be gentle with yourself! Focus on one thing at a time. Try not to to multitask. Simplify and stop for a moment. Just breathe. Be in the moment where you are, and know that this too shall pass.

If there is one thing I have learned over the years, it is that even personal balance has its ebbs and flows. Kinda like everything in nature, eh?

“I vow to let go of all worries and anxiety in order to be light and free.” -Thich Nhat Hanh

Namaste y’all!

Carolyne

To Sleep or Not to Sleep – that is the Question!

“A little knowledge that acts is worth infinitely more than much knowledge that is idle.” -Kahlil Gibran

Sleep. Such a simple thing. Or so one would think, eh?

I recently did a sleep study, and my results proved to be somewhat of a surprise. Apparently, I don’t sleep well at all. I move an average of 55 times per hour, and wake up and average of 3-4 times per hour. Apparently – that is not good. Huh. (And more astonishing, the night I did the sleep study, I thought I’d had a really good night’s sleep!)

On the positive side, it helps me understand why I wake up every morning feeling utterly exhausted.

So – what am I going to do about it? I don’t know yet. That remains to be seen once I see another specialist. (Yumpin’ Yiminee – I have a lot of specialists!) What does it mean for me? Well – it means naps are a big time tool for me to manage my fatigue levels…so I will continue napping! (Mike and I love a good nap – nothing better than snuggling together and drifting off for an afternoon nap whenever we can grab one! Added bonus: regular snuggling keeps us close and deeply connected!)

On the curious side, I wonder – why? Why do I not sleep? Why am I not aware that I am not sleeping? Is it because of the brain lesion? MS? Medications? Perimenopause? Stress? Childhood trauma? Brain damage from concussions or seizures? All or none of the above? Would increasing my yoga to ensure some YIN Yoga just before bed make a difference in actual sleep? Does diet affect it? (Caffeine, yes – for me.) Time to start tracking my sleep patterns more closely, and seeing if I can discover more about myself. Oh goodie – I can be my own science project again!

Curiouser and curiouser, as they say. (Well, after all I am considered “utterly fascinating and complicated” by my diverse medical team!)

“Open minds lead to open doors.” -Unknown

Namaste

Carolyne

A Revealing Conundrum

“The most important of life’s battles is the one we fight daily in the silent chambers of the soul. “~ David O. McKay

(photo credit: http://actinglikeanimals.wordpress.com/tag/dog/ )

Have you ever been in a situation where you had to weight the pros and cons of revealing something about yourself and risking making yourself conspicuous rather than staying inconspicuous?

I recently had to do a complex travel hop for work…alone. This hop included a flight to Ottawa for one day, then a mid-day hop to Toronto by air the following day, then an evening flight to return to Halifax after a day of meetings on the final day. So what was my conundrum? Whether or not to reveal my seizure disorder to airline personnel.

To reveal, or not to reveal – that was the question!

If I don’t reveal, and have a seizure, I could end up in the middle of some strange city as a form of “Jane Doe” with no one aware of my predicament. Or I could make sure I have back-up in the form of colleagues and travel staff at least knowing who I am and where I came from and where I should be. It really is kinda black-white in terms of pros-cons…but the part about making myself stand out from the crown is the part that can be the question du jour. Because I have absolutely no warning if and/or when a seizure may occur, and because they are full-on tonic-clonic, and I lose awareness of myself for hours thereafter, revealing is a very real question that I must consider whenever I travel alone. For example – in travelling to Ottawa and Toronto, I was heading alone on the flight, and staying alone in my hotels. If I had had a seizure mid-flight…the airline staff needs to know how to help me and who to call to care for me.  I have colleagues in both cities, so I could give them names. Coming home, I could give them my family contact info. But giving my contact info is not the issue…it’s the very real choice I must make to actually reveal my medical condition and the reason WHY they need my contact information.

Initially, I was not quite sure how to go about it – I wanted privacy as much as possible. So I finally decided that the best way for me to handle it was to board the plane during the pre-boarding times…when people need extra help, extra hands, extra time. That way I could get the airline stewards’ attention a bit more privately, and feel a bit less conspicious. (Now – that being said, sometimes the glares from impatient people waiting to board and watching what seems to be a perfectly hale and hearty woman boarding in pre-boarding can be quite daunting. I can only imagine the colourful words cycling in their heads!)

I gotta say – having 3 opportunities on 3 different planes in 3 days to experience my revealing conundrum was fascinating in some ways. (That nerdy scientific side of me always comes to the front, eh? Such a geek! ) One young steward was absolutely thrilled because he was a registered nurse with a neuroscience specialty. One steward was stunned, and did not know what to do with the information. One older steward was very professional, noting information and checking on me mid-flight. Me-thinks age and training levels may have had some play here, eh?

So – was revealing as much of a conundrum as I had thought previously? Not really. But then again, I am a person who is willing to be transparent and share my experiences in life so that others can learn from them, if it applies.

Revealing takes courage, and a willingness to be vulnerable. If you are not a person who is comfortable being open about personal issues, this can be a very tough situation. One has to weigh the pros and cons for themselves and decide – to reveal, or not to reveal.

That is the question. What is YOUR answer?

“Since life and experience is a matter of trial-and-error, there’s no need to take choosing – or life itself – too seriously.” ~Soren Lauritzen

Namaste

Carolyne

K.Y.L. Yourself – no, really!

“When I’m good, I’m very good, but when I’m bad, I’m better. ”
Mae West

(photo credit: World of Harmony)

K.Y.L.  It means, for those who are not sure, “Know Your Limits”. It’s not as easy as it would seem!

Recently I have noticed that my “inner bitch” has been more mentally vocal of late. My patience is thinner than normal – to the point of nearly being non-existent if I have to deal with inefficiency and laziness at the office. Yikes. Without quite seeing it it, I’ve been feeling unsettled, with a low-level of anxiety, for the past couple of weeks. A number of things have been contributing to it..but the main this is that I have been pushing myself and not acknowledging my own limits. I always have some big project or big idea on the go, and my passions for helping people often translate into taking on way too much.This unsettled feeling translated for a while into me doing more, More, MORE. Why I go that way when I am overwhelmed & tired…well, that’s something I need to watch. Chalk it up to that old Type-A personality of mine!

How does one recognise when they have pushed themselves beyond their limits? It’s taken me over 47 years, but I think I am finally starting to recognize my own signs…I am finally KYL-ing myself better! For me, a very patient person normally, I see that my patience wears desperately thin, and I just need to get away from people as I pull in emotionally. My sensory input goes on overload – noise drives me up the wall and create low-level stress that grows. If I don’t address it, I begin to get agitated and antsy – craving sweet or salty foods…too irritated and exhausted to make healthy meals. (My kids love that phase because pizza becomes a staple!) My ability to push myself to exercise, meditate, and do my yoga becomes compromised…I’d rather just sleep. I find making simple decisions, like what’s for dinner, become irritating and burdensome – I resent having to decide. I also notice that I seek TV “fluff” more, and need to read simple fantasy books. (When I am really overwhelmed and pushed beyond my limits, I crave paranormal romance novels. Nothing like a good sexy and ripped immortal highlander to rescue you from the drudgery of your own thoughts, eh? Gives me a whole new perspective on “Hot Flash”!)

Now that I see that I have been pushing myself beyond my own limits, I can deliberately do the things that bring me back to my centre and allow me to rediscover my personal balance – things such as rest more, do more yoga, read or watch more mindless “fluff”, or pull back a bit on some of my personal projects. (Instead of 5 big personal projects, I cut it down to 2, with plans to take on the other 3 down the road when the timing and energy is better! Yay me! Hah!)

For me, this balancing act, and the ability to know my own limits, is critical. If I push beyond them, I risk provoking a seizure. I would really rather not, thank you very much. While I am never “there” myself – they really cause quite a cuff-uffle for friends and family due to their drama.

How about you? Do you have any signs or habits that signal that you’re maybe doing too much and going beyond your own limits?  KYL for yourself!

“The most difficult times for many of us are the ones we give ourselves.”
Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

Namaste

Carolyne

Balance in all Things – even your Passions!

“To think in terms of either pessimism or optimism oversimplifies the truth. The problem is to see reality as it is.”
― Thich Nhat Hanh

Balance. It’s all about finding the right balance even in the weirdest circumstances.

I have recently been giving a lot of thought to what exactly defines my personal balance, especially in appreciating the hilarity of my “new” medical status: fascinating, complicated, and unusual and confounding.

I saw my new seizure specialist, who works with my MS specialist, and they ran my case file in front of their monthly hospital specialists case presentation (House team equivalents). They are all stumped by my medical situation – I likely do have MS, but on the other hand my “brain mass” is deeply embedded in my left temporal lobe and hasn’t changed so it may be mild or benign MS. My spinal tap shows MS signatures – but even that test is not a specific test to “prove” MS. The brain mass may or may not have been in there all my life, but it’s too dangerous to biopsy so we’ll likely never know. Even with all the tests I’ve had, apparently it could have been “missed” by earlier technology. My seizures have epilepsy signatures and the placement of my “brain mass” in my temporal lobe is often a typical cause of seizures, but I also have signatures of something called non-elliptical attack seizures disorder (NEAD – which medical science does not understand at all right now). I endured severe childhood abuse, which is a factor lending to NEAD. They want to keep monitoring me until they can figure out what my diagnosis “should” be. Is it MS? MS and Seizure? MS, seizure and something else? All or none of the above?

My doc’s recommendation: stay the current path of MS & seizure disorder balance. In other words – keep doing what I am doing with teleworking etc; avoid stress as much as humanly possible; keep doing yoga; stay on the seizure meds – and keep an open mind! Because I have no warning he said I will likely never be able to drive again (unless they can actually diagnose me or discover an actual trigger). He also recommended I do not take baths (showers only) and that I do not handle power tools (WTF??).

That is the part that made me laugh until tears poured down my cheeks – My son already says “Mom, step away from the drill”. Now he has a doctor’s recommendation: his mom is not allowed to use power tools! (Hmmm…that could be a really good thing… do “power tools” include a stove for cooking dinner? :)

There is always humour to be found – even in the seemingly darkest parts!

One of my seizure triggers may be a delayed reaction to overwhelming stress – overload of either positive or negative stressors. So for me – I really need to stay aware of my personal balance. The people who know me, generally see me as a very positive person who takes on life with enthusiastic passion. Sometimes, in my enthusiasm and passion, I take on too much. I push myself to accomplish more, keep commitments that I made despite my personal energy levels: do, Do, DO. Even if the endeavors are completely personal and fully enjoyable – it can lead to a seizure if I do not monitor my fatigue levels.

Balance. It’s all about finding the right balance even in the weirdest circumstances.

“Life is a process of becoming. A combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death.” -Anais Nin

Namaste

Carolyne

Medications Side-Effects : Finding your Medication Zen Point

“Your body is precious. It is our vehicle for awakening. Treat it with care.” -Buddha

Nothing like a little Downward Dog on the river to make you feel alive, eh? Find your solid grounding and take a moment to feel strong and rest at the same time. A mini journey of sorts, if you would.

Dealing with medication side effects can be much the same – a journey into finding your ground, and seeking the Zen point of Balance between feeling good due to medication and feeling not so good. It’s not as easy as it seems to determine whether symptoms you are experiencing are drug side effects, MS symptoms, regular old flu/cold symptoms, or symptoms as a result of stress or anything else. Add the complications of aging, and sometimes you don’t know if your body is MS’ing, PMS’ing, or Menopausing!

I like to call it the Rule of PMS³! (PMS to the Power of Three – yes, I really am a physics nerd at heart!) When you have no idea what’s happening – it’s probably one of those. Works for men too – but we’d have to rename it MS³, because men have andropause…)

When living with a chronic illness such as MS, medications are often a big part of your life. Medications for the illness. Medications for the pain. Medications for the intolerable side effects of the priority medication. Then there are the cross side effects when one drug affects how the other drug affects you. It can be a daunting and confusing road sometimes, figuring out how to best navigate medications and side effects. It starts to feel like you are playing a round of Abbot & Costello’s “Who’s on First…

The beauty of how yoga has helped me learn to manage my medications and their side effects and understand them better is through allowing me to develop and hone my self-awareness skills. Self-awareness is not only psychological – it is also physical. I find that I am now MUCH more aware of what is going on in my body, when and why, as a direct result of practicing mindfulness, non-attachment, and being fully present in each moment as much as I possibly can. I understand more why my body is moving in a certain way; what may be causing a certain pain in one area I now recognize as possibly due to a condition in a completely opposite area. I have learned that the toe bone really is connected to the shoulder bone, in a manner of speaking! The human body really is an amazing piece of work!

For example – last week while on a fall house purging spree, I ended up feeling a sharp pain in my right jaw area suddenly by the end of the day, when I was most fatigued. Because I had been moving things around a bit, I figured that I had somehow clenched my jaw and pulled a muscle somehow, irritating my TMJ in my jaw. But I knew something was not quite right with that theory because I have learned that when you have pain due to muscles or bone alignments, it is usually reflected in some way somewhere else in the body. This wasn’t. A few days later, the pain was spreading and the headaches were worse…but I could still turn my neck. At that point, I started fitting the puzzle pieces together – my right side of the head hurt…and it was an ear infection, not TMJ nor a pulled muscle. I saw my GP, and she confirmed my thoughts. I was put on an antibiotic -again.

Turns out, my seizure meds, which have a known side effect of suppressing the immune system, especially of the respiratory system, has weakened my immune system further. My immune system is already weak due to MS. The doc said I need to be carefull about exposure now, as my body is not able to handle the infections like before. I am starting to understand that, since in the past 8 weeks I have had a serious and sudden bout of bronchitis, and now a painful and sudden ear infection (which I have never had before in my life). But – heck…if it is a choice between full-on Grand Mals with no warning, or the odd sinus infection…well, for now the odds fall better in the infection camp. That may change down the road…but for now, my Medication Zen Point is the point between tolerable side effects and intolerable consequences if I don’t take the drug! I’ll take the ear infection over the grand mal seizure, please!

“It is necessary to combine knowledge born from study with sincere practice in our daily lives. These two must go together.” -Dalai Lama

My advice to anyone dealing with the Medications Side Effects russion roulette: develop your sense of self-awareness. It will never steer you wrong!

Namaste

Carolyne

It’s all about Communication

“More important than the quest for certainty is the quest for clarity.” -Francois Gautier

Communication (noun): Intercourse by words, letters, or messages; interchange of thoughts or opinions, by conference or other means; conference; correspondence.

Communication. Such an amazingly simple concept, yet an amazingly difficult thing to achieve. We are a world surrounded by so many means of communicating…but is anything being heard?

I was recently reminded of how fragile communication can be. Communication fragility comes in many forms, such as when an e-mail is misinterpreted, leading to a hurtful misunderstanding between old friends; or when a text message is sent incompletely, leaving a confused recipient wondering what that was all about; or when there is no information at all shared, and communication is stopped, leaving a void to be filled with false assumptions, hurt, and resentment.

Sometimes, the misunderstanding can start from the perception of a simple phrase or word. Take the phrase “Good for you”, for example. To me, that phrase indicates support, well-wishing, and positivity. I recently ran across someone for whom that phrase meant insult, criticism, and implied a condescending intent. Whoa! How can two people see three little words so very differently? The answer, my dear: Personal perception…

Personally, communication is a big passion of mine – good, clear, open, honest communication. Unfortunately, sometimes my own MS cognitive impacts kick in, and communication can become quite an interesting endeavor! Words become difficult for me to find, and sometimes I substitute other words in my search – not always with the intended results! Luckily, when I am speaking to someone face-face, I can throw my hands around while I search for missing words, and the people who know me can fill in the gaps when I can’t find the word. I have learned that humour makes these cognitive lapses much easier to handle – for everyone! (Especially if I am in the middle of a situation where I really need all my faculties, including my ability to clearly communicate, such as on stage or in a board meeting!) Unfortunately, this does not translate as well in written forms of communication, such as e-mail. I have noticed that incomplete sentences and the wrong choice of words can lead to un-intended misunderstanding and confusion, rather than understanding and clarity. Oops. My bad!

“Be gentle first with yourself if you wish to be gentle with others.” -Lama Yeshe

When managing a chronic illness, such as MS & seizures or anything else…communication becomes critical, in that the medical team needs a full, clear picture of what’s happening in my life to be able to treat me in the best way possible. I personally have no problems being open and transparent in life, mainly because I grew up with so many hidden secrets in my family that I abhor any form of “skeletons in the closet” mentality. Not everyone is like that, I know. But I have found, especially with the medical teams over the years, that you have to be willing to mention the “unmentionable” sometimes, or they don’t have the big picture and cannot accurately treat you. For example – if you suffer from pain on a daily basis, but out of pride won’t admit to any pain or minimize how deeply the pain is affecting you, for fear of some kind of perceived judgement, your doctor cannot know how to accurately help you. Or if you suffer from depression, but neglect to mention to the psychologist that you are going through job-loss or marital break-up, well the doctor can’t make a correct assessment and advise you properly. Or, if you are experiencing sexual difficulties, but never bring it up – well, you can end up with more than just sexual difficulties! I still remember the first time I brought up sexual symptoms of MS to my neurologist, and was faced with a very uncomfortable doc and no clarification. Later however, an MS & Sexuality seminar was created by that doctor’s clinic! What does that mean? It means that enough people asked the tough questions so that the need for information was clearly communicated, and the need was filled by clearly communicating to patients via the seminar.

When it comes to sharing and communicating with family and friends, that is a critical part of managing any chronic illness – they are your primary support system. I am not talking about a daily whining session, complaining all the time about what’s not working. Nor am I talking about taking out frustrations by unproductive rumination over perceived losses. I am talking about sharing personal truth, in as positive a way as possible – openly, honestly, non-judgementally, including the good, the bad, and the ugly, in an effort to maintain clarity and authentic understanding. I am talking about clearly communicating any necessary information to enable them to help you, and vice versa.  I am talking about being vulnerable, and listening to not only your own words, but the words of those you love.

And when you do have instances when your communication skills were not as polished as you would normally like – that’s ok. You are only human, after all! Learn from the experience, remedy or change what you can when possible, and move on.

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others. ~ Tony Robbins”

Namaste

Carolyne