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Donna's Blog…

Follow along as I swim, bike, run, eat, work and enjoy life - my own thoughts as well as guest posts. I regularly write about my training, physical therapy, races, lessons I have learned, charity fundraising, cooking, and random musings.

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White Flag Feelings

Friday was a tough day. A *mentally* tough day.

It started off at 7am, with a gruelling visit to Michael the sports therapist.  Although I had already seen Michael on Monday, my foot just WAS NOT RIGHT.  It ached.  The dull pain was always there.  It needed more attention. It was wearing on me.

Because, when your feet hurt, your whole sense of self can go into a downspin.

I left my appointment feeling battered.  My foot was aching, although not the same painful ache as at 7am.  More like an aching relief.  I had to remind myself that this pain would be temporary, that relief would come, that the big picture - to keep moving to keep on moving - that was the important thing.  And that I was doing THE RIGHT THINGS to keep moving.  Even if those things HURT FIERCELY.

Having a chronic condition can be wearing, mentally.  To carry the burden of pain for which there may or may not be relief.  To live with something which may advance and progress, but whose progression is unknown and unpredictable.  For this reason I have created a supportive healthy environment for myself - I have great friends who are a source of positive for me.  I have super supportive family.  I have a husband who is my number one champion - he helps me to stay calm and focused, to keep my eye on the big picture and he helps me to remember that the blips are temporary.

Sadly this type of peaceful supporting atmosphere is not a constant.  Like everything in life, you can only control so much.

I have alluded to my personal struggles (not the physical ones but the mental ones) here and here.  It has never been easy with regard to the way I feel about having a neurological disorder and how I manage my disorder and the acceptance of it - by both myself and others - in my everyday environment.

I have shed so many tears about this - acceptance - that I need to do a re-think. I need to stop expecting compassion from others but instead be compassionate with myself.  I need to stop hoping for support from others but instead make sure that I have support to turn to when I need it.  I need to learn that compassion is not part of everyone’s emotional DNA - let’s face it, if a person is not truly interested in others, there will not be compassion…

It is a cold hard lesson.  And not one that has been without expense.

It has taken its toll on me emotionally.  I have experienced anxiety, and during that period of time I gained about 10 kilograms.  I can lose my head at my husband, and then feel so guilty about the explosions that I have, especially since none of it is his fault and not to mention the fact that he is my number one champion. 

I have sought external advice and I understand the worse case scenarios for everything.  But who wants to live through worst case scenarios? 

Really, all I want to do is feel accepted, understood, and at peace.

Through the lows, I continue to believe that I surround myself with good people.  It is just that sometimes I feel like SOME OF THOSE PEOPLE do not understand and they show this through their actions and words, which are ignorant.  Some people are devoid of compassion and understanding.

Do I blame them?

I mean, I do not appear like there is anything wrong with me.  You would never think it.  You might pass me on the street and see a bit of a limp.  You might pass me on the race course and see my ankle braces.  Or you might not see those things.  You might not look twice.  Mostly on the outside I look “normal” - just like you.

But on the inside? I have nerves that are fraying, ligaments that are lax. I can’t see them, but I know that this hot mess of fibre inside my body is unstable, unpredictable, and a source of misery which occassional rears its ugly head.

I fully understand that it is very difficult for others to have compassion for that which they cannot see.

On Friday some old wounds came to the surface…  Hurtful words replayed in my mind, echoing in my ears.

Do people know how it makes me feel when they ask:

“Don’t you feel like a fraud competing in paratriathlon against other athletes who are missing arms and legs?”

Do people understand how my achievements and circumstances are diminished when they say (quite openly after a bit to drink):

“If you can swim 4.4 miles then clearly there is nothing wrong with you.”

I spent at least half of my weekend crying or being upset by these feelings - brought to the surface, again, by ignorance and lack of compassion. 

I know.  I can look at this as a victory.  I have won the battle.  I have made myself so strong on the outside so that my internal struggles seem secondary.

But I don’t see it this way.  It is personal, and it is hurtful. 

It is hard to live with uncertainty.  It is hard not knowing if someday my mobility might vanish.  I like to think that I can go a long way to manage my well being with solid decisions, by being active, by being strong.  But sometimes one person’s callous communication, their ignorance… It can make all my efforts feel pointless.

It makes me want to raise the white flag.

May 1st was Blogging Against Disablism Day.  I am a day late with my post.  I have been writing it since last week, and it has taken a lot of emotional energy to polish it to this point - but it is still not perfect.  I hope that it at least captures some of the frustrations, uncertainties and issues that someone who lives with an invisible illness has to deal with.  Please remember that not all disabilities are visible.  Please remember that everyone has a backstory.  Please take the time to have a bit of compassion and understanding and to try to learn about the struggles your friends and colleagues face.  You never know what is going on with someone on the inside - until you ask, and listen.

Comments

  1. Marcelle

    May 2 2012

    Donna, I think your post is very interetesting and does highlight some of the questions, misunderstandings and ignorance about disability in sport.

    With the paralympics round the corner, there is often a time for people to really think about disability, how some people can race against others, how it is ‘graded’ its really confusing sometimes.

    Would love it if there was some comprehensive analysis to accompany such an event. maybe something for you to think about for your blog or at least collating interviews with athletes in your sports field & resourses as its a powerful time for a bit of education while people are engaged on the subject. I for one would love such a resource on the cycling/swimming/running topics.

    anyway on top of that. I’m sorry that your n so much pain at the moment and hope you realise that yes there are the odd ignorant statements and questions but there are many more of us who are in awe of your outstanding achievements.

    Best

    Marcelle

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  2. Lenka

    May 2 2012

    I could have wiritten this post myself! I am also dealing with a flare-up of pain that may or may not be long term issues (I so hope not). I also had a tough week at work where they wanted me to serve on an important committee. After all, if I work two days, I can attend monthly meetings, right? And I had to talk about how much it costs me just to get through the day.

    This is why I talk about effort when it comes to disability. The effort is the hidden monster that we negotiate with daily. And the fall-out after when it takes ages to recover.

    I know we’re far away, but I sympathize and understand. Heroes may not be obvious smile
    Best wishes!

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  3. ultrarunnergirl

    May 2 2012

    People sure manage to say the exact wrong things don’t they? Whether it’s a miscarriage, a breakup, the death of a pet ...

    The irony is, those who say things like “if you can swim 4 miles there’s clearly nothing wrong with you”  probably think they are paying you the highest compliment.

    People are bulls in the china shop of feelings. 

    When I had a bulging disc that made nerves twinge in my leg for nearly 5 months, I thought I would lose my mind.

    So for what it’s worth, I think you’re a rock star, tough as nails and courageous.

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  4. Jori Reijonen

    May 11 2012

    Thank you for sharing your experiences with us.  By sharing, you will help others to better understand invisible disability and have more compassion.

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  5. Melanie Pennebaker

    May 16 2012

    WOW Donna!!! wow!  your post choked me up. why?  Because I have dealt with the exact same circumstances.  I truly believe no one, NO ONE, understands what people with chronic illness and pain go through unless they have experienced it themselves.  You know even my own husband has a lack of empathy for what I deal with on a daily basis.  It was cost me many tears.  Just know that you are not alone in dealing with these issues.  You are courageous, stong, and powerful!! Everyone talke about the physical strains, but the emotional strains are commonly forgotten or avoided.  Sometimes the emotional feels so much more painful.  My physical episodes are painful in the moment but pass,  but the emotional scares left by others and my own personal struggle with acceptance of not one but three disabilites stays with me.  Your blog does help others, it helped me.  keep posting and know we in the CMT community support you!

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  6. melanie pennebaker

    May 16 2012

    wish i could share this blog on facebook or like this page.  i really wish you would post this particular blog on the cmtatheletes fb page, pllleeaasee.

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