Category Archives: MS treatments

MS Whammy: The Raw Emotional Impact

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God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. ~ Reinhold Niebuhr

Well, I have been “off-line” for a few weeks, you may have noticed. Why? A bunch of things…but suffice it to say the bottom line was because of an MS back-handed WHAMMY!

In recent weeks I have been trying somewhat unsuccessfully to juggle my health management needs, family needs, and work-related needs. As is my wont, I pushed myself much to hard to meet a deadline at work for a high-profile opportunity (which was successful, by the way). At the same time I was dealing with a teenager’s confused and volatile life-searching angst which had direct repercussions on how I manage my household, and dealing with a new “complication” related to my MS. All this combined to bring me down to a state of total disengagement and “cocooning”. I was bone tired. I was at a level of raw emotional pain that literally had me keening in the fetal position in my shower almost daily. Basically – I needed to check out for a bit – from work, from tech, from everything…and simply rest. Rest, rest, rest.

Have I ever mentioned that it is hard for me to “slow down” and actually rest, despite a chronic illness that requires it?

With all the stuff going on, my self-identity took a direct hit, leaving me wondering what my life would be like without MS & seizures. Would major decisions have been different had I never had that seizure that forced my car accident all those years ago? Would my family have been better cared for if I had died in the accident? Did I do enough for them despite my MS? What is my life purpose? Why can’t I stop crying? Who am I? I felt angry as hell at my health situation – angry that maybe it was a main reason behind the teenage angst I was seeing.

What was all this? Grief.

You see, grief that is associated with living with a chronic illness can back-hand you at the most surprising times, and in any of its various stages. The past month I was feeling deep grief and anger and depression – triggered by a decision made by a family member. That in turn made me more ill with a flare of MS symptoms and more despondent, especially since I was already at a low ebb due to giving everything I had to teaching a professional workshop.

I am crawling out from under my rock now. But these past few weeks have served as a strong reminder to me that the grief of living with a chronic illness such as MS sometimes lies much closer to the surface than I am willing to admit.

But it also shows me that there is always a light shining somewhere when that rock is moved away.

“Life is a song – sing it. Life is a game – play it. Life is a challenge – meet it. Life is a dream – realize it. Life is a sacrifice – offer it. Life is love – enjoy it.” ~ Sai Baba

Be gentle with yourself. Namaste.

Carolyne

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Allowing for Personal Renewal in 2013!

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“I can hardly wait for tomorrow, it means a new life for me each and every day.” ~ Stanley Kunitz

Image Source: http://breastcancerpartner.com/blog/uncategorized/renewal-spring-is-here/

Image Source: breastcancerpartner.com/blog/

As 2012 came to an end, some sighed in relief that the world did not come to the prophetic end. Some did not have any clue that 2012 was supposedly an “end” to anything. Most of the world simply went on living life as usual.

Everyone has their own individual experience with the past year (2012) so I am not going to do any kind of run-down of 2012 events. We all can do that on a deeply personal level. Look back at 2012 and recognize the blessings there. Recognize the challenges and subsequent learning opportunities. Recognize the achievements and appreciate the moments of joy. Be grateful for what 2012 brought to your life, big or small. Then, let go of 2012 and move on to a sparkly shiny new 2013.

The year 2013 for me will be another year of change and goal setting. Here are a couple of my personal goals for 2013:

  1. Get into optimum training form. To do so, I will kick up my synchronized swimming training efforts a notch to make my goal of competing by  my 50th birthday in spring of 2014 a reality. (I have already begun this one by joining a local gym with my hubby and beginning a training regimen tailored to my injuries and medical adjustments and my goal of competing. This should complement my weekly synchro swim training sessions well! ) 
  2. Keep on top of my health management by ensuring I maintain a healthy diet and manage my fatigue properly. To do so, I will follow a healthy diet with as much raw foods as possible. I will not over-extend my energy limits to the point of exhaustion. I will schedule in more relaxation yoga and meditation.

The greatest mistake a man can make is to be afraid of making one. -Elbert Hubbard

The training goal is the tough one physically. While there is definitely excitement to be back in the water and training competitively in synchronized swimming, I battle frequently with a little niggling fear in the back of my mind that maybe, just maybe, I have bitten of more than I can chew this time. Little ghosts of thoughts cross my mind, such as: Will my body be able to handle this? Am I crazy? Am I too old? Am I too “disabled”? Does it stop me? Heck no. But it does keep me on my toes and AWARE of myself and my own qualms.

The first step towards getting somewhere is to decide that you are not going to stay where you are. -J. Pierpont Morgan

The health management goal is the toughest one. That’s the one where I have to really fight myself to keep…because I can so easily slide into bad eating habits or push myself to  work too much when I am over-tired. When I am fatigued is also when my brain does not seem to function at its best, and I have been known to make really weird decisions in terms of best choices at the times. (I believe my sister often uses the phrase “OMG – Do you need a brick to hit you in the head every time to get you to finally rest???” ) Trying to get a Type-A person to recognize when she is in full Type-A throttle and to scale back can be quite a challenge at the best of times!

So – do I expect to be perfect this year in reaching my goals and resolutions? Heck no. But I will have fun on the path!

OUR GREATEST GLORY IS NOT IN NEVER FAILING, BUT IN RISING EVERY TIME WE FALL. -CONFUCIUS

Have fun on your own 2013 journey!

Namaste.

Carolyne

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What is the End of the World, anyway?

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“Sometimes the questions are complicated and the answers are simple.”~ Dr. Seuss

Image Source:www.timeanddate.com/calendar/maya-world-end.html

Image Source:www.timeanddate.com/calendar/maya-world-end.html

So – what is the end of the world, anyway? What does the end of the world as we know it mean?

These questions have been flying around as the legendary end of the Mayan long-count calendar approaches, which falls (according to north american “experts”) on December 21, 2012.

Personally, I think the end of the world has come and gone many times over, and will come and go many times over in the future. I believe it is also highly personal. And I believe what can be the end of the world as we know can mean a brand new beginning and a new world to discover.

Just looking at this 2012 year exemplifies that for me.

A friend lost her child when a pre-natal check-up showed no heart beat – the world as she new it ended that day. Couples divorced, fighting bitter battles over child custody or money – the children’s worlds ended as they knew it. Someone gets officially diagnosed with a chronic illness like MS – the world ended as they knew it that day. A maniac kills innocent children and adults for some unknown and whacked-out reason – the world as the families of the victims ended as they know it that day. Militants, rebels, and corrupt governments fight endlessly, killing civilians and military personnel – the world as they and the people around them know it ended, repeatedly.

On the other side of the coin, there is a new beginning. But that new beginning is not necessarily always easy or painless. The person diagnosed with a disease starts a support group and sees a new beginning and a new life managing and coping. The results of the maniacal killing spree of a whacko spurs a new beginning for better and safer gun laws and restrictions. I married my best friend, lover, hero, and the most wonderful man I have ever met; that day the end of the word as I knew it occurred – and a brand knew world began for me.

As human being, we seem to always search for the “end of the world” somewhere. Do we really need to look for the end of the world in things we cannot control, big or small? I say “Stop”. Look a little bit closer to home…and appreciate what you have around you. Appreciate the little endings, the little beginnings – the world around you. Don’t try to control what you simply cannot. Don’t panic about things that have no basis in truth.

The world changes every single day. Be grateful for the world as YOU know it.

“In three words I can sum up everything I’ve learned about life: it goes on.” ― Robert Frost

(See you on the other side of the End of the World. ;)

Namaste

Carolyne

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Rest: We will Return after These Messages…

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“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

Overwhelmed: Medication Russian Roulette and More!

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“Our lives improve only when we take chances and the first and most difficult risk we can take is to be honest with ourselves.” -Walter Anderson

Wow – it’s been longer than I thought since my last blog. I had all the best intentions in the world…but I got overwhelmed. I got overwhelmed by work, by my own work ethic (can you say Over-Achieving Super Mom?), by my body’s inability to keep up with the workload, and by medication choices that were put in front of me due to medication side effects.

Work-wise…well, bottom line is that when the poop hits the fan, the work has to get done. All my years of training have created in me a work ethic that ensures I meet deadlines. Period. This means that when something needs to get done, I get it done where I can (even if it is not “my job”). This ethic conflicts with my energy levels in that my body says “Yeah, whatever. The work will still be there tomorrow – I am taking you down now.” As a person with high expectations of herself, that is a hard pill to swallow. For me – that is a signal that I need to do more gentle yoga and mindful meditation to practice better “non-attachment”. I am on a much needed week-off right now as I pushed myself in recent weeks to the extreme limits in order to meet deadlines and makes sure the workshop my colleague and I were facilitating went well.

Medications-wise…AAAAARRRGGGHHHH! That part is just plain frustrating. The side effects of some medications are often worse that the illness they are treating!!!! And the most frustrating part of it is that every individual reacts differently to medications, so you don’t know what side effects will impact you until you are actually on the medication. Currently, in order to lesson the side effects of my seizure drug (Keppra) and tackle MS Pain and sleep problems, I am starting an additional new seizure drug called Vimpat, with the intent to get to lowest doses of both together so that we minimize side effects and maintain the success rate of seizure control. This one is so new, that little is known other than clinical trials. SO…basically, I had to decide if the risk of trying this new drug is worth the potential side effects. Is it worth it?

It is often the choices we have to make that can paralyze us. For example, in going through the seizure med options with the doc, I found that my choices boiled down often to the following:

  • drug a – weight gain, hair loss, psychosis
  • drug b – weight loss, hair loss, documented significant drop in IQ (as much as 20 points in some cases!!!)
  • drug c – weight gain, rash, double vision
  • and so on….

So – my choices are: fat and bald, and potentially out of my mind; skinny and bald and “stupider” (pardon the choice of word); fat, itchy, and trouble seeing…and the list goes on.

It was alot easier for me when I decided to stop the MS meds – the only other option afforded me has a side effect of death due to brain issue, so even the docs agreed to keep me of the MS drugs. For the seizures though it is another story – the meds may save my life, no matter the side effects. My seizures are violent and sudden, and each time I have had one i have been significantly injured in some way, so the docs are not eager to see me off them for my own safety.

Erg.

This is where the overwhelm can hit hard – sometimes I just want the whole thing to stop. Just stop. I get tired of having to choose. I get tired of having to think of what effects my choices will have on me, on my family, on my work and on my ability to work. I don’t want to have to make decisions between Poop Box A, and Crap Box B. I can find myself exhausted and overwhelmed, not just by the meds themselves, but the choices of what we are willing to give up while on that particular med in order to maximize the positive benefits of that same med. And that can also lead to tears of frustration and even anger at being in the situation to begin with – anger at your body, anger at the disease, anger at the situation in general.

This is when I turn to yoga the most – it helps keep me centred, or re-centre me when I have lost my focus. It helps me see the situation from a more non-attached prespective, and see the moment for what it is. There are many different ways to go about dealing with the emotions, but the most important thing is to never give up.

“We are all faced with a series of great opportunities brilliantly disguised as impossible situations.” -Charles R. Swindoll

Namaste

Carolyne

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