Category Archives: seizures

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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Chronic Illness and Mental Health: Ghosts We Fear to Discuss

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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

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

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“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

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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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Try, Try, Try. Period.

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“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

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