MS Whammy: The Raw Emotional Impact

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

A Type-A Personality Trapped in a Type-MS body?

“Imperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.” ~ Marilyn Monroe

Have you ever felt…well, trapped…trapped in your own body?

I recently was talking to a friend of mine who was experiencing just those feeling, and was down emotionally. She has an injured foot, and it is a permanent injury thanks to the incorrect efforts of a doctor who initially treated her. As an athlete, she can no longer participate in her sport. Walking for her has become a painful experience – and sometimes she needs a cane. Running – well, just forget it. But the loss of her usual mobility has left her feeling trapped – trapped in a body that won’t function like she wants it to do. Her identity is impacted – who is she now, in her own mind, “excluded” from her sport of gymnastics? Depression is a resulting possibility.

As a person with MS and Seizures (or any person with a chronic illness, such as multiple sclerosis), I fully understand that feeling of being “trapped”.

Sometimes, I want to rant and rail at the world too, asking the heavens “Why? Why am I trapped in this body that won’t keep up with my mind?? Why me? Why now?”

Lately, I feel like I have been dealing with an inner simmer of emotions, tears often close to the surface. (Well, that may be due to menopause or just that fact that I am a soft-hearted sappy and sentimental person…but that’s for another story! :) )  I have been dealing with an MS exacerbation for a number of weeks now, and it has weakened & fatigued my muscles to the point of significantly affecting my back injury from my seizure/car accident years ago. I have had to pull out the old cane, and I am on restricted activity as a result. I feel trapped by my own body’s limitations. I am wondering if I am dealing with a new “normal”.

Being an active person, and always “into things”, the idea of having to slow down, or even stop, can really impact my own identity – even though I know that slowing down is necessary as a management strategy for my health. I have SO many things I want to do – go out with friends; be more active with my family; participate in my hobbies; be able to work full-time and with full cognition at all times. Personally, I can get alternately weepy or cranky as the intensity of the feelings of “trapped-ness” vary. Right now – with my exacerbation lasting so very long, this trapped feeling is too real. Having to slow down and really rest is too constraining, irritating, frustrating…and down-right annoying.

So – how does one deal with those feelings? Well – that is very individual. Personally, I deal with it with sheer stubbornness. Is this always good? Sometimes yes, sometimes no – depends on the situation (and how ornery I am being). For example – my back injuries have been so painful of late that only being in the water gives me any real relief. So I went to synchronized swim practice as per usual, despite fatigue, seeking the bliss the water provides me. Well, early into the practice, I had a wave of virtigo hit me so hard that up was down, down was up…and my coach had to steady me on the side of the pool. She asked if I needed the lifeguard, and I said no – determined that this too shall pass. It idid – after about 10 minutes of resting on the side. I then got back into the water and continued the practice but at a reduced level of activity. (Note: I do not recommend this level of stubbornness to everyone. Safety first!!! I am just sharing my stubborn levels and its craziness!) 

I got through the swim practice fine thereafter, and found the bliss of the soothing water once again. But, whew – am I nuts? I just refused to be “trapped” by my body’s limitations that night, dammit! I am a type-A personality “trapped” (at times) in a type-MS body.

So – if this IS my new “normal”, then I have to re-discover myself a bit. I have to re-jig my health management routines and strategies to accomodate that new “normal”. Living with MS, that is simply a fact of my life. Change is a fact of Life – no matter who we are.

“When you are content to be simply yourself and don’t compare or compete, everyone will respect you.” ― Tao Te Ching

Oh – and my friend? She took up a new sport as a way to “un-trap” herself: synchronized swimming! It accommodates her foot injury just fine! See? There is always another option, a way to manage and accept what you are dealing with in life. One just has to be open to looking for it – and seeing it! (But maybe keep an eye on the level of stubbornness in your choices! :) )

Namaste

Carolyne

Allowing for Personal Renewal in 2013!

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

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

Image Source: breastcancerpartner.com/blog/

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

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

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

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

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

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

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

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

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

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

Have fun on your own 2013 journey!

Namaste.

Carolyne

Health Management still applies during the Festive Season

Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. ~ Buddha

We are in the midst of the holiday season festivities. This is a happy, busy and tiring time for many. It can also be a lonely time for some. Both ends require efforts to management of health.

When dealing with a chronic illness, there a more challenges afoot: trying to maximize your ability to meet social and family commitments while minimizing the drain on your energy and any impact to your health. Impacts that come not just from the demands on time and energy, but also the changes in diet and drink consumption. (Those mince meat tarts of auntie’s are to die for…oh and the cookies, cakes, hor d’ouevres, tourtieres,…oh my! What do you mean this is not the way to eat every day? Oh…my head…how many glasses of wine did you say?)  We eat differently, don’t sleep the way we normally do, and push our bodies to meet social and family functions. While all this can be fun…we need to pace ourselves and keep our health management need very clearly in mind. Because pay back is a Bi**h!

In the old days, it was not called the Holiday Season; the Christians called it ‘Christmas’ and went to church; the Jews called it ‘Hanukka’ and went to synagogue; the atheists went to parties and drank. People passing each other on the street would say ‘Merry Christmas!’ or ‘Happy Hanukka!’ or (to the atheists) ‘Look out for the wall!’ ~ Dave Barry, Christmas Shopping

So, from me and mine to you and yours: Happy Holidays! Happy Hannuka! Happy whatever! (And look out for the wall…)

Oh – and congrats on surviving the end of the world prophecies! ;)

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