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

Happy 2014! Time to re-assess and re-new!

“January 1st is the first blank page of a 365 page book. Write a good one.”
― Brad Paisley

Well, another new year is upon us. Wow – 2014…already?? How time flies… Time for a new 365 page “Book of 2014″, as Brad says.

I have always felt that this time of year is a good time to reflect, re-assess, and renew. It can take the shape of re-organizing a closet or a cupboard, to renewing a commitment, to re-assessing a goal or two.

I have to say that 2013 has not been my favorite year – but I plan to make 2014 a better one! You see, 2013 had me bouncing around a bit too much in terms of medication side effects, changes in my health, and menopausal symptoms and MS symptom flares and … well, you get the picture. Confusion was the Word of the Year for 2013 for me. (Though hindsight is as clear as a bell!) And I spent much of 2013 crying all the time – for no reason! I just would cry for no understandable reason…which turned out to be medication and symptoms side effects.  Between my seizure meds causing serious anxiety symptom side effects for months, and menopause bringing me a new meaning to the phrase “hot and sweaty” (dripping…OMG), I have found the process of aging gracefully to be a bit of a challenge in 2013. (I mean, c’mon, Mother Nature: whiskers, acne, return of bad cramps, and sleep deprivation? Seriously? Erg.) So 2013 was a very soggy year for me.

So I decided to look as what needs re-jigging for 2014.

One of my top personal goals for 2014 continues to be competing in Synchronized swimming by my 50th birthday. Since I am currently swimming with a team, this one is working well so far. Keeping up with a group of 20-somethings is tough, but I am doing it. It is not so much the physical part as the mental parts that are the biggest challenge. Remembering counts of music and how the routine’s choreography goes can be more challenging some days, and less so others…depends on my MS cog fog levels! But, so far, so good – MS brain farts and all!

Another of my top 2014 goals is to help people more…by blogging, by volunteering, by talking, by sharing and raising awareness of MS symptoms like seizures, and of living a full life no matter what. I currently guest blog at MSRelief.com, and I volunteer my time with the local university Health mentoring program, as well as other volunteering for the MS society and other local health societies. Where ese can I help?

And over all of this – my priority goal is to manage my health well and maintain a quality life balance for myself and my family while I fulfill my personal goals. But as you know by now, I am not one to go slow or go small, eh?

My wish for you all, as you write your own 365 page Book of 2014 is for a great quality of life, good health, and personal balance.

If I shoot at the sun, I may hit a star. —P. T. Barnum

namaste.

Carolyne

Stress, Swimming, Change and other Stuff

“Everyone thinks of changing the world, but no one thinks of changing himself.” ~Leo Tolstoy

I saw this picture online at the noted link, and it resonated with me in a very deep way. Why? Because of stress.

Stress, you question? Why would this picture move my mind to think of stress? It doesn’t – it reminds me that stress can become so “normal” that it can become a way of life that we don’t even recognize. It reminds me that there is more to life than stress – such as pure joy.

This picture reminds me that we need to always seek ways to let go of stress. For me – nature and water are typically stress reducers.

Stress isn’t always bad. In small doses, it can help us perform under pressure and motivate us to do our best. But for those of us with MS, symptoms can often be exacerbated by our own action or inaction in dealing with stress.

Personally, I seem to have a really bad habit of finding myself in situations of spiraling stress. Sometimes (too often, actually)  it takes a medical crash to make me wake up to the levels of stress with which i have been living. But I must say that as I get older and gain more experience with my personal MS course, I am slowly learning to start to recognize my stress levels sooner – and take mitigating action sooner where I can. I am learning to adapt and change.

This can be really tough when I am working full-time, trying to manage my MS symptoms, and trying to fulfill some goals. What I am learning now is to understand where the “stress line” for me – the line or edge that, if I go past it, will inevitably lead to a medical crash of some sort – whether it is seizures or multiple MS flare-ups. Often – the stress can be a product of my own making, truth be told. For example – when I take on too much at work, because I am trying to prove myself or ensure my professional value. I can end up cutting myself off at the knees because my body wears out, leading to a crash, and I don’t succeed as I expect. Or by trying to fulfill a goal such as swimming competitively in synchro with a team again, and pushing myself to reach my goal, even if it may not be the best fit.

The importance of being able to pull back, look at the bigger picture, see where the stressors are, and figuring out how to let go of the stressors that you can control…well, that is a special art, as far as I am concerned. And one that needs significant time to master! And I am in no way close to mastering this art myself, that is for sure! Though I am getting better at identifying the source of the stressors. Some I can control; some I can’t – it is situation dependent. The stress sources that I can control – well, I have to figure out how to lessen impacts on my health. That can take the form of pulling out of a project; adapting a routine, and/or removing oneself from toxic situations or people.

Finding the courage to follow through, however, can be a b@%ch, I can assure you! (This seems especially true of those of us who are over-achievers because we tend to not want to give things up easily!)

Obviously, we can’t get rid of stress completely. This is especially true  when you have a disease like MS - because the very nature of an unpredictable illness like MS means there is always a basic level of stress that will be present. The constant changes that can come with MS, such as not knowing from one day to the next what part of you may or may not be working as you expect, can create a constant low “stress buzz” that niggles at the back of your mind for various reasons. That’s why having a stress-mitigating tool – such as exercise, yoga, or meditation – becomes ever so important for us.

For me – those tools come in the forms of swimming, walking, yoga, crafts, and good friends. I can’t change everything – but I can change myself. I can adapt. I can let go of the stress…or at least some of it!

“If there is no struggle, there is no progress.” ~ Frederick Douglass

Namaste

Carolyne

MS Brain Fog – huh, what?

“They are able who think they are able.” ~ Virgil

“Huh? What?”

Sometimes that seems to be a phrase I say way too often.

Now – I consider myself very lucky in my MS – because, while I have some serious symptoms such as seizures, chronic pain, and chronic fatigue, I am still quite physcally able. That said, I do have cognitive issues as a result of MS that affect considerably how I live, adapt, work. For me (and many MS’ers) – MS manifests iteself in a way that is mostly invisible to the every day eye looking in from outside.

Many of us with MS experience some form of cognitive issue. The National MS Society reports the following:

In MS, certain functions are more likely to be affected than others:

  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Information processing (dealing with information gathered by the five senses)
  • Executive functions (planning and prioritizing)
  • Visuospatial functions (visual perception and constructional abilities)
  • Verbal fluency (word-finding)

Certain functions are likely to remain intact:

  • General intellect 
  • Long-term (remote) memory
  • Conversational skill
  • Reading comprehension

I see the top list and find myself checking off each symptom on the list. (Check. Check. Check….Erg.) Then I get to the second part and think “Thank gawd – I still may have some basic marbles left!”

I myself am always re-evaluating, re-discovering, and re-analysing my own cognitive issues. I say “re” because short-term memory is an issue…so I often re-do things and re-discover what I knew before. Add in menopausal mayhem, middle-aging memory slumps, and multi-tasking mash-ups…and, well – you get the picture. And is there any real point to trying to figure out if it is due to the proverbial MS Chicken or menopausal Egg? Really, MS may have come first…but at this point, I think the “cause” edges may be getting increasingly blurry! (I think of the information processing issue: yes, I do definitely deal with MS repercssions of that…but as I age, I think menopausal fall-out happens too! Hormones strike again!) I just have more trouble, well, simply thinking.

Most recently, one of the things that I am finding more challenging than I expected was the challenge of associating figures to counts in the synchronized swimming world.  I have lived with the physical and cognitive repercussions from full-on grand mal seizures in the past (ie. severe concussion and associated memory loss for weeks, cracked ribs, wicked bruising, etc)  and the on-going up and down cognitive levels associated with my MS (i.e. inabiity to do basic math or remember what I am talking about mid-sentence on one day, then “geniosity” levels the next day). But I figured that simply counting to eight musically and associating routine elements would not be too problematic. Ha.

What is happening is that physically, while synchro swimming is definitely a challenge, I am able to master most elements. The biggest challenge is happening mentally – because of cognitive issues around numbers and short-term memory issues. Basically – all the symptoms from the top list is happening – blatantly and obviously. In synchro, while developing a routine there is a lot of trial and error: “Let’s try this; let’s see if this works”. This means that the need for short-term memory becomes critical. And MS can make this very difficult.

As an example – on a recent practice, we were developing another segment of the routine. Then we did a full run through. I did the entire routine just fine until we got the the newly developed part – then I totally blanked! ACK! Now, the more I practice, more and more of the routine sticks in my head. But the most recent sections always lag behind at least 1-2 weeks, memory-wise. This can be a huge frustration – not only for me, but for the people around me (especially if they do not understand why I am havng trouble remembering things). The phrase “Huh? What?” is something that I find myself saying much too often during practice!

But while it can be frustrating and challenging to push again cognitive issues – I am doing it. Do I need to adapt? Yup. In synchro, it means that  I need to do more repetition than the rest of the team. I need to repeat more things more often. I need to write things down more.

In the rest of my life, I need to take more time to fully be sure I understand. In speaking – I need cue cards because I have much more difficulty “winging it” than before. I need more and more lists for everyday things like shopping and regular daily tasks. I need frequent reminders – and I use more and more tools to do exactly that.

I seek out whatever tool and trick that I can to help with whatever new cognitive issue that pops up. And I adapt every day – because every day changes.

Um…Where was I going with this again…?

“The future is completely open, and we are writing it moment to moment.” -Pema Chodron

Namaste

Carolyne

Me & my MS: Finding “Normal” … Again

Nobody realizes that some people expend tremendous energy merely to be normal. ~ Albert Camus

What is Normal? When you have a chronic illness such as MS, does the definition change?

Someone recenty commented that I was trying too hard to be normal. So I have been having a philosophical discussion with myself in recent weeks about what I consider my own “normal”. What is normal anyway? Is it a behaviour? A way of speaking? A way of interacting? Is it skin colour? Is it clothing choice? Is it education? What is “normal”? More importantly…what is MY normal?

My answer? Normal is a very individual thing.

My own “normal” has undergone a reformation and reshaping this year…so I am trying to figure out what that normal is now. In the past year I have moved, gotten re-married, started full-on menopause with its roller coaster ride of crazy symptoms, found myself unchallenged at somethings and over-challenged in others, dealt with the ups/downs/and sideways issues of having 2 kids in university, and thrown myself heart and soul into my personal cause of swimming against stigma (by swimming competitively in synchronized swimming after 30 years out of it). So…where does normal come into this equation?

As I have aged and managed my life with MS, I have never strived to be “normal” – because that definition is elusive, as far as I am concerned. I have always strived to be “normal for me”. And what is normal for me? How can I figure that out if the parameters keep changing on me, as is the wont of MS and its symptoms?

Normal for me means dealing with change and adapting on a monthly, daily, and even hourly basis. It means pulling back when I need to, and pushing forward hard when I can. It means heeding the advice of those around me when I can, and knowing when to ignore it, listening to only my own advice to myself. Normal for me means pushing the boundaries; seeing where the edge is and if I can push past it. It means facing my fears and doing it anyway. It means breaking stigmas against MS, seizure disorders, and chronic illness as a whole.

My normal from 30 years ago differs from my normal of 15 years ago, and from my normal of 5 years ago, or even 1 year ago. What was the overlying common denominator in all of that? It was my resilience and ability to deal with change. THAT is my normal.

I re-discover my normal on a regular basis. Right now – my temporary normal is figuring out what my new normal is with my new activities such as swimming and trying to be back in the office more often than before. Is it hard work? Yep- Very hard work. Is it worth the frustration, confusion, and sometime even pain? Yep. For me – that is just a normal part of the process.

What is your normal?

Normal is not something to aspire to, it’s something to get away from. ~ Jodie Foster

Namaste

Carolyne

Push through! Push through! You can do it.

Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. ~ Thomas Jefferson

As many of you know, I manage my MS by maintaining a strong exercise program – which includes swimming, walking, and yoga. This daily exercise routine is necessary to manage my fatigue and pain levels. Too much lying around causes my leg pain to skyrocket, and makes me more fatigued and less mobile. Two days of inactivity can cause painful immobility – and I really don’t like it, so hence I maintain as high a level of physical activity as possible. Luckily, my earlier years as a synchronized swimmer, lifeguard team member, waterpolo player and weight training enthusiast have given me a “push through the pain” discipline and mentality that serves me well now when I need it for my own survival.

Even so, MS remains confusing to manage and pisses me off sometimes (ok – lots of times).  I can push myself very hard while swimming and maintain amazing cardio benefits as a result. I can do hot yoga and regulate my breathing and maintain flexibility. But push myself a bit hard on a warm sunny day? …that’s another story all together. Hubby and I hiked around the Dingle Tower park here in Halifax recently on a beautiful sunny summer day, then we climbed to the top of the historic tower. It is just a few stories high…straight up wrought iron stairways. No problem, right? I mean – I am fit, and have cardio benefits to burn, right? Well, I get to the top…and the world starts to go grey at the edges and I feel myself about to faint…so I drop immediately and spend 15 minutes on the floor to prevent a full-on faint. All this brought on by being overheated and my MS flaring up, saying: “Nope – don’t like it. I am gonna take you down.”

It made me angry to feel weak and vulnerable. It made me angry to feel “bested” by my own body – despite all my efforts to maintain a good balance. So – that stubborn streak came out yet again. Because I recognized what was happening, I was abe to prevent a full-on faint by resting at the top of the tower, allowing the breezes to cool me rapidly. Once I felt cooler and stronger, I got back up – and I climbed down those stairs on my own, shaky legs and all. And lucky hubby – he did not have to carry me down the tower stairs! Though he chivalrously walked in front of me so he could catch me if I fell. (That man is wonderful – and so patient with my stubbornness! )

To me – it is that “push through the pain” mentality that allows me to push the boundaries of my own body like that – beyond my MS; beyond my fear of having a seizure. I don’t like feeling held back – and I will try to do whatever I can to succeed at my goal. Do I always succeed? Heck, no – we all know that by now. But to me, trying is the most important part – it means I am alive and moving forward. Sheer stubbornness helps too!

Respect your efforts, respect yourself. Self-respect leads to self-discipline. When you have both firmly under your belt, that’s real power. ~ Clint Eastwood

Namaste

Carolyne

Me and my MS: Why I love the water and swimming

“Nothing is softer or more flexible than water, yet nothing can resist it.” ~ Lao Tzu

Carolyne coming up from the depths!

Carolyne coming up from the depths!

Water. H2O. Is there anything more beautiful and potentially terrifying at the same time?? The power of water (as can be seen in the floods we have seen here in Canada this year) is awe-inspiring. It can bring peace. It can destroy. It is a basic necessity of life.

In the summer, people often head to swimming pools, lakes, ocean beaches, rivers, kiddy pools, sprinklers…anything to be in or near water. We do this primarily to stay cool and get away from heat – MS or no MS. With excess heat, often comes irritability and  health distress of some form. With excess heat, those of us with MS often see flare ups of symptoms and severely increased fatigue levels – none of which is good.

Thank goodness for my ability to get in the water and swim, and feel comfortable, and feel cool. Whether I am upside down spinning in some wild synchronized swimming figure, or swimming flat out, or just floating…I am comfortably at peace with my environment.

In the water is the only place I feel no pain. When I am in the water, I feel like I am home.

When I say I feel no pain, I mean that gravity is no longer a factor in my pain. The movement in the water also helps take away the deep burning pain I chronically deal with in my legs.  Daily movement is what helps keep that pain manageable – but swimming helps give me a nearly complete break from it. (That is an emotional and mental bonus, in my books.) But in order to gain that benefit of feeling pain-free, I do have to push myself to feel the “pain” of hard exercise. I have to push my body to gain good cardio benefits and strength – and  that comes with the pain of the exertion, as in “No pain, no gain”.

I have been swimming again with my local Masters swim team…and marveling at the effects it has on me. While Synchro develops strength, grace, agility, and breath control, swim team develops more on the cardio and endurance levels. Gasp!!! The two combined, along with yoga, keep me physically balanced and increase my ability to manage pain. But I still sometimes overdo it – and I learn from it each time.

When one has MS, they have to learn to find the balance between “just enough” and “too much”, or risk the backlash of MS symptoms. I usually only know when I have pushed too much after the fact – such as when I end up deeply exhausted, in terrible burning pain,  and foggy brained for 2 days after a particularly hard training session. (That’s when gentle yoga and resting meditation is really critical!) Hindsight is always 20-20 though, eh? Finding that sweet spot between “just enough” and “too much” takes work – and often with MS, finding that sweet spot is never ending, because MS symtoms can flare and change so unpredictably. Do it anyway!

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

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

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