Tag Archives: MS

Facebook is not good for me or Goals Revisited

29 Sep

Goals Revisited

Goal 1) Power walk 5km in 45mins

Arm swing forward, shoulders are back and my legs move with gusto.  The beat of the music propels me. I am a power walking queen only beaten by the lady with the grey hair and the two walking sticks. I swear her walking sticks possess  magic properties, but I don’t care. The only thing I care about is my goal. My goal is to finish the Scotiabank Waterfront 5km in 45minutes. I don’t care about the people that can run it in 30mins. I don’t care about those who may snicker as I walk past the finish line at the 45min mark or even if I am last. I only care about me and my ability to finish what I started.

Now, if only I could apply that logic to my life.   At almost 35, single, still working on my degree and living at home (being diagnosed with MS set off events that ended with me living at home) I feel like loser. It doesn’t matter how I spin it; I feel like I flunked out of adulthood.  I never envisioned at 34.99, I would be living at home. Single. I look at facebook it reminds me of my failure as adult. My friends have houses, children.  When I really want to mutilate myself with images on facebook, I look up my ex-boyfriend to see his success as adult (two children and a white picket fence).  That makes me feel awesome every time! (That was sarcasm.)

WAIT! THIS IS PATHETIC!

I am focusing on all the wrong things. This is my life and yes, my life is far from what I imagined, but it is mine. I need to own this life of mine and own my decisions. I need to focus on my goals like my 5km. I don’t care how I accomplish 5km, just as long as I finish it. No person power walking that race will take away from my accomplishment. So, why am I allowing other people’s success to devalue my image of myself? This doesn’t accomplish anything.

 When I was first diagnosed with MS, I promised myself that I would handle it with a positive attitude.  I don’t think I have been handling the MS with a positive anything lately.  I have been focusing on what I don’t have instead of what I do have. I have so much. I have great parents, loving friends, a good community and an infinite amount of possibilities for my life. I may have not met my Mr. Right, but that doesn’t mean I won’t find him. I need to get to the work of making gratitude part of my daily life again. Goal- to focus on gratitude.

Goal update

1)     5km- did it and doing it three times a week

2)     Go on a date- Well, I didn’t do this yet. (I have given myself an extension for this goal until the end of November)

3)     Goal 3- see the ocean. Did it! I saw the ocean when I was in Newfoundland

4)     Goal 4- Get a good grade in my next class- I haven’t received my final mark yet ( I got two A’s while in class)

5)     Goal 5- Blog more- I was working on school stuff.

6) Focus on Gratitude

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Learning Disability- Different Not Less

4 Aug

My grade one teacher’s words haunt me.  She thought I was retarded.  I talked out of the side of my mouth, I coloured outside of the lines and my spelling was “unique”.  If the teacher had asked me why I talked out the side of my mouth, I would have told her I thought it was “cool”.  I don’t remember the exact moment I saw Jean Chretien, but I know I was impressed.  I was mesmerized by the way he spoke; I had not seen anyone speak out of the right side of their mouth before. On my first day of grade one, I wanted to make an impression and talking like Jean Chretien seemed like the perfect way. My Grandmother loved Jean Chretien (a devoted liberal party member).  Emulating Jean Chretien did not have the desired effect on my class or on my teacher.  I was not ready for grade one.

 I was a chubby kid, teased during recess and lunch. “Big targets are easy to hit”, the boys yelled while hurling pine cones at me.  I spent my recess hiding behind the portables, wishing I could vanish.  In class, things weren’t much better.  My teacher’s disdain for me was palpable.  I was different. I stopped talking like Jean Chretien after the first week, but it was too late. Her impression of me was etched. The classroom was noisy and active. I had no desire to read or learn.  I wanted to play! In my class, once your work was done you could play.  The faster your work was done the more time you had time for play. I still remember looking at the page, scribbling ANYTHING, so I could free myself from the chain of work. I did not understand anything. My mind constantly wondered to magical imaginary places that were far away.   The classroom E.A’s permanent position seemed to be hunched over my desk; her perfume choking me while her well-manicured neon nails pointed at my work. She tried desperately to wake me from “my world”.

Midway through grade one my parents had me tested.  The testing took place in a small room, where there was nothing distracting on the walls and the room was quiet.  The tester was kind. She made me feel smart.  A feeling I had not had before, after our sessions I was labeled with a learning disability.  At the end of my grade one year, it was apparent I had not learned.  My parents wrestled with the decision to push me forward or keep me back a year.  I was held back. I failed grade one (along with six other students that year).

I am a grade one failure. I know the feeling of being in a room and not understanding a word.  Being in a classroom where the teacher’s words would bounce off the walls and I was unable to catch them. I desperately wanted to understand, but didn’t know how to begin. The gap between me and the other children was too large.  I retreated to my wonderful imaginary world where I was successful.  In the real world of grade one, I could not be part of the reading club that got the colourful new books. I was part of the tattered book club. We read faded copies of Dick and Jane who only seemed to run places, unlike Mr. Mugs the mischievous dog who did things.

 I have always been very self conscious of my intellect.  I still am.  I think it is this awareness that draws me to working with adults with cognitive impairments.  I don’t want anyone to feel that they aren’t smart. The teacher thought I was retarded and I saw and heard that.  I knew even at the age of six I was being treated differently.  It has taken years to shake off that self image; I am still surprised when I get a good grade.  The anxiety I feel before I hand in a paper is great because there is still that voice that tells me, “You’re not smart”. When I worked as instructor therapist for children with autism, I was told by a colleague I was too positive with the children.  Too positive and reaffirming! I don’t ever want a child or an adult to feel that because learning is hard for them that they are inferior.  In grade one, I felt inferior in the classroom. This feeling seeps into your identity and limits you; it cements you to your failures. I was a different child.  I did not fit into my teacher’s lessons plans. As Temple Gradin states, “I am different not less”.  It took me a long time to accept this, I learn differently, but I am not less.  I think this is why I am so committed to working with adults with learning disabilities, they may learn differently and they may experience the world differently, but they are no less a person.  I am committed to trying to create a world in which difference does not mean inequality.

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Goals- “There is no achievement without goals.”

5 Jul

In my last blog I wrote, “My immediate goals are to jog 5km, go on a date this summer, see the ocean, and get a good grade in my next class and try and blog more.”  I am repeatedly learning that having MS means that it takes me longer to achieve goals. The way I originally envision reaching my goals is always a little different (No surprise there).

Goal 1- Jog 5km

I was ready to conquer this goal! I bought the 5km running application for my iPhone. I believed that with the right outfit and song mix I was going to be running 5km in no time.  I knew this won’t be an easy task. I would not let the pesky facts that I have never been athletically inclined or MS stop me. One morning, wearing my cute jogging outfit that resembles a soccer Mom’s uniform, I was off to conquer my goal!  The app tells you when to walk and when to jog and over the course of a month you walk less and jog more until you are jogging 5km.  I started out well! One foot in front of the other walking straight and to the beat of Kelly Clarkson’s motivational song, “Stronger”. The jogging app interrupts the song to inform me it was now time to jog. Thrusting my arms forward, I began to jog (until it was time to walk again). I was feeling confident. Walking tall tingles started creeping up my leg and grabbed a hold of my left thigh.  It felt like my left thigh had inadvertently placed itself in an invisible blood pressure cuff.  With each step the cuff seemed to tighten around my left thigh, my left leg stopped wanting to jog and with 8 minutes left in my first jogging session, I did not give up, but I did submit. I walked the rest of my “jogging” session still feeling the cuff around my thigh.  I tried repeatedly to jog, each time taken over with tingling limbs. Committed to completing 5km in a race, I have now changed my app to a power walking app. I am a better walker than jogger.  I have broken limbs running.  I have never broken anything walking.  On October 20, 2013 I will be participating in Scotiabank Toronto Waterfront Marathon, Half Marathon, 5km.  I checked the results from 2012 and a person took an hour to complete it, this is an achievable goal.  I can do this.

Goal 2- Go on a date

This isn’t as easy as it sounds. I am not exactly Kate Winslet (I think she is beautiful).  I don’t have a British accent and I do not have a body that Leonardo Dicaprio wants to draw. I am pretty according to my mother and to a focus group of men over the age of 50. On rare occasions when the curly hair fairy blesses me with a good hair day, I can be attractive. I do have one big problem, I can’t meet men.   All the typical ways that you meet men, school, work or friends are dead ends for me. My class is all women.  I work in a job that is mostly women and my friends are married, coupled up or gay.  They all tell me that they don’t know any single men (they could be lying, but I am choosing to believe them).  It is hard to meet men.  This leaves me with only one option the INTERNET! I have had scads of bad dates. At 34, I am done with bad dates.  I don’t want to waste nights of good energy on bad dates.  I also don’t think the MS is something I should worry about  because with the right man it won’t matter.  Tomorrow night, I am meeting with my married friend to help me create a profile. I am following the guidance of Amy Webb and her insightful Ted Talk- “How I Gamed Online Data to meet my match”.

http://youtu.be/OF5VVrsnpzo

Goal 3- see the ocean. I am going to Newfoundland in August.

Goal 4- Get a good grade in my next class (Class starts Monday)

Goal 5- Blog more

Oops!

I am not good at this goal.  I find that blogging takes a specific energy. When I have energy, I like being out and about. My computer prevents me from going out, she isn’t “cool”.  My computer isn’t an apple.  I feel sheepish pulling her out at a coffee shop.  My computer’s name is Bertha. She is a big sturdy laptop with a great personality.  She and I enjoy watching netflicks together.  This is not a reference to Jane Eyre or Wide Sargasso Sea. I will try harder at blogging (maybe shorter blogs).

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MS will not prevent me from reaching my goals.

Good Good Vibrations! Tales from the Neurologists office

29 Jan

Last week was my second visit to the MS clinic. On my first visit, my father accompanied me for moral support.  This year, I was going to the appointment alone.  Last year, the neurologist looked at my scan; half listened to my concerns, told me that MS is “unpredictable”, but I will be fine. He told me that I won’t have a relapse for ten years and I was dismissed. I left baffled. My Father and I created the game MS neurologist. I ask Dr. Neurologist Dad, “Will MS turn me into a jelly bean?

Dr. Neurologist Dad says, “It is unpredictable”.

Will I turn into a killer robot?

He responds, “MS is unpredictable.”

It is a game that makes me laugh. I need to laugh because I am too upset and too scared.  I didn’t know much about MS, but leaving my neurologist office, I felt like I knew less, except “MS is unpredictable.”

This year I was prepared. He was not going to dismiss me so easily. Armed with the dates of my relapses, a list of my symptoms and a few key questions, I was prepared. He was not going to dismiss me this time!

I arrive at the clinic and see a familiar face. A woman that was at my first support group for newly diagnosed people was in the waiting room.  When I met her she had had Relapse Remitting MS for three years, in September they switched it to Secondary Progressive MS. Instead of discussing her bad luck or how much her life sucked in a wheelchair, we talk about gratitude. Gratitude. Imagine that? Gratitude. Throughout this past year, I have learned that practicing gratitude and reaching out to my trusted friends and family members is my key to surviving this “unpredictable” disease. My awareness for the smallest pleasures has heightened. I stop. I enjoy the sun breaking through the trees.  It is a mental exercise being positive. I always pat myself on the back for my positive attitude and resiliency.  The woman in front of me, with Secondary Progressive MS deserves a metal!! She closes the door on the negative thoughts and opens the door to the positive thoughts. Remarkable. We both acknowledge that MS sucks. She says when she is angry, she allows herself to cry and get angry.  Then it is over, she does not allow her frustration with MS to control her life. I share my bubble technique. “What is the bubble she asks?”

I tell her, “When I am truly frustrated with the MS, I tell myself I am in a bubble.  I get as sad I need, or as angry as I need, or as self pitying as I need in my bubble. When I am done and I have exhausted all my negative feelings. I take a deep breath. I extend my finger towards my invisible bubble and I burst it. The invisible bubble pops. I move on.”

She laughs and tells me she might try the bubble technique one day too.  My Neurologist calls my name.

I walk into my Neurologist’s office, prepared for him to dismiss me again. I am feeling great today. First thing he says to me, “I am not happy you had a relapse”. Like I could control it, but then something happens. Something that is so surprising to me, he starts taking my concerns seriously. It throws me off of my game. I have a planned speech in my head and notes. He baffles me again, but this time by his concern. I am thrown when he starts testing me. He says, “touch your nose, touch my hand, push my hand, don’t let me push down your legs, do you feel this…”

Crap! “No.”

I don’t feel the metal vibrations on my left foot. This surprises me. I chuckle and say, “This is a placebo right? You’re not doing anything and that is why I can’t feel it.”

“No. You vibration test is down from last year. I am ordering a second MRI. We may need to change your copaxone.”

Then he answers all my questions, he even smiles. Leaving his office, I think MS may be unpredictable, but so are the neurologists. That night, I play the vibration test over and over again in my head.  My feet for the past month and a half constantly tingle, but they do not stop me. I never think much of it. I decide I need to do my own vibration test. I get my “toy” that vibrates. I place the toy all over my feet.  Last year, after my appointment I felt helpless and sad that I had an “unpredictable” disease, this year I am putting a purple vibrating “toy” under my feet to see if I can feel it. MS is unpredictable.  In the mean time, I will continually practice gratitude and my bubble technique.

Community, sadness and gratitude

27 Oct

34 is a number that repeats it’s self in my life. In college I lived in R534 and R634. My first apartment was 134. The number 34 wasn’t always kind to me. My failed Canadian Idol audition number ended in 34, but I do not recent 34.  On the contrary, I am grateful to 34 it saved me from public humiliation. 34 and I have a good thing going.  I was looking forward to turning 34. Never imagining that on my 34th birthday, I would be in my parent’s basement hooked up to an IV, making small talk to a nurse. I have cried twice since my MS diagnosis. The first time, when I figured out that I wouldn’t be able to live in a home I loved.  The second time, was when I discovered that my dynamite financial plan to “pay off debt, save latter”, wasn’t a successful plan. With zero debt, I moved back home. My parent’s welcomed me and bought me a bed.

Today on my 34th birthday, I stare up at my IV.  My IV gives me an audible sigh of sympathy. That is all I need. My eyes brim, tears cascade down my cheeks. My conversation with the nurse halts. My speech pattern is staccato. I produce one syllable words.  I have MS. I am usually the first to say, “It is part of my life and I better get used to it.” This week has been hard.  I need to be honest with myself, this makes me sad. Sad. I could use better words like: bereaved, bitter, blue, dejected, despairing, despondent, disconsolate or woebegone. (http://thesaurus.com)  Sad is simple and earnest. I feel sad.

As I am stare down at my hand, not listening to my nurse. A comforting memory from my time at Simpson House pops into my head. The house and I were preparing for a funeral. An assistant was sick in her room and I was going to be the only one supporting the house for an hour. (Support was coming and there was a second person there if she needed to be there.) I am glad that it was just me. That morning was sacred in the house. I remember the yellow haze of the spring sun breaking through the glass, painting the living room a golden yellow.  I crept into Lillian’s room first, wake her up. I explain that we all need to be extra helpful. I wake up the rest of the house in the same fashion. We were going to say goodbye to their dear friend. The whole house came together. Dressed in their Sunday best and united in their grief. The lines between Assistant and “core” member fade. We were family. We keep on saying to each other, “We will get through this together.” The rest of breakfast they share their stories of their beloved friend with laughter.  When there was a quiet, sad pause, someone would say, “We will get through this together.” That morning reminds me of a passage from Jean Vanier’s Community and Growth, “… in this way, community life is not something extraordinary or heroic, reserved only for elite and spiritual heroes. It is for us all; it is for every family and every group of friends committed to each other.” (Vanier 94)

As my IV finishes, I realize I am not alone in this. I am not 34 alone.  I am 34 with an extraordinary community of family, friends that are family and core members that are my family. I have friends that I have had since childhood, high school, college and an excellent bunch of European adventures friends. Today in my sadness, I am reminded of my community. I flip on my Facebook.  I have so many birthday wishes! Each birthday wish quietly says to me, “We will get through this together.” Thank you. I am overwhelmed. I am so lucky to have a community I love.  Image

Insomina makes me reflect on my past and future

25 Oct

A change came on Thursday morning. My right hand tingles. My tingling hand. A tingling right hand. My hand feels like static, on a TV screen. Constantly. Buzzing. No one knows. You can’t see my buzzy hand. My hand doesn’t go purple or make a buzzing sounds. It stays firmly attached to my camouflaged wrist. It is invisible. My hand hangs out with the other limbs blending in. My right arm tells me, “If your hand is going to buzz and tingle then we, the rest of the right arm are going numb too. It is our right as a right arm!!” (Personally, I liked it better when it was just the left side; they never thought of invading the entire arm. The problem was solely located with the left hand and it stayed with the left hand”)

It is always sad and confusing when my body rebels against me. Didn’t I give them enough sleep? Didn’t I lavishes them with chocolates and peanut butter? Didn’t I bath my body in Kale and Shakes? I even invited the sensual and exotic antioxidant blue berries to join them in on the fun. I looked past their scandalous past to ensure that my body got all the proper nutrients it deserves.

Sadly, I still struggle with the MS. I don’t enjoy the MS’s new power over my body. MS watches what I eat. MS watches how much physical activity I have. If MS feels that if I have been living too well then it is probably time for a relapse. I realize that my body is having a relapse. I think my central nervous system is having a great time with this relapse. My Central nervous system yells, “Wait- watch, she is actually going to try to get change out of her purse. God bless her isn’t she just darling for just trying.” My hands fumble for what feels like five minutes before; I manage to clasp my fingers around the quarter I want. The people behind me in line are annoyed. I have always been slow and now I am slower. This relapse has made me keenly aware of all the things my hands do naturally without a thought. I reach in to my pocket and I am able to guess what I have touched by the texture of it. That feeling is gone. For now, but I know when it returns I will not take it for granted. We take so much for granted. On Saturday, I had a choice I could succumb to my relapse or I could tell my central nervous system to screw it- I am going to CANADA’S WONDERLAND!!!

MS is a part of my life. A numb right hand and a buzzy arm will not stop me from having fun. I cease the day with my brother and his wonderful girl friend! The day is brilliant! The autumn leaves only added to the beauty of the day. Instead of being scared that you were being dragged up 93.3 m in the air. The autumn leaves enchant me before I plugged down an 80 degree hill. It took my mind off my numb hand and tingly arm. I was out living instead of convalescing.

After my tremendous day with Bob and Mercedes, I  thought I have this MS thing figured out. I can push through these symptoms, so instead of being vigilant about my bed time, I ended up staying out late on a Date. I made up with a five-hour nap, but the next day the PRICKLES CAME! These are by far the most intense and unpleasant symptom then I have experienced. Work keeps me on my toes. I fool myself. I am fine. I can do it all. Numbness is not a problem. Tingles- not a problem. Prickles- ANNOYING AS FUCK, but not a problem. I am in fine form. Then at 2:00 on October 20, The MS told me it was the boss! The fatigue set in, the tingles and prickles decided to have babies and torture me. I waited to crawl into a hole. I thought that I had this figured out. I thought it would be years before I would have to go through this. The last few days have been hard. My own thoughts crowd me. Not good thoughts, but thoughts of my future. It was so hard for me to go to a shower and not hold a baby for fear I might drop it. (Not a fun shower game- Chicken! Let the MS lady hold your baby and see if it drops) I went to the shower to see my childhood best friend and her beautiful children. The shower took all my energy. The MS came back with vengeance and I let it. I had been too uncomfortable for too long. On Monday I called the MS clinic and they suggested Steroids. Lance Armstrong informs me how they are used through an IV. With IV dripping into my hand I saw Lillian’s hand. Her smile flashes. I must be strong. I can ride roller coasters while having a Relapse. I can take an IV, but it is more than the IV. It is the realization that this is a part of my life.
The man I went out on my date with told me he thought I would make a great mother. I know. I have a great capacity to love. I always worry that I don’t want to be a sick mother. I want to give my child the same energy and love as when I was an aupair. I know that my relationship with MS is not a healthy one. I know I don’t know much, but I can’t let it stop me either. I have to ride roller coasters; I can’t hide from my friend’s children because I don’t know if that is a possibility for me. I can’t live in fear of what my MS will bring me. I found a list of things I wanted to accomplish. I made this list before MS came into my life. I wrote this list when I was up in the mountains with my two best friends.

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The MS and me

30 Sep

It is October.  Not yet, but in one day it will be October. This is the month that I always feel is the beginning of my year. Maybe it is because I am an October baby or maybe it is because I am the daughter of teachers. Either way, this is the time of year that I reflect and make goals for myself. Obviously the possibilities project was a horrible failure, after one day I aborted the project. I realized that I wasn’t ready. Truth is, after reading my friend’s Blog, I realized I didn’t want my blog to be a creative writing project, but maybe a space where I could be completely honest. I carry around so many feelings. If a person as me how I am doing, I say I am fine. Totally fine. I am lucky. Truth is I am lucky, I have great parents, a great big brother, a group of talented and interesting friends and a job I mostly love that inspires me.

    
  Notice what I left off the list, I am healthy. As Joan Didon said, “I am a healthy sick person”. Last December, five days before Christmas I was diagnosed with Relapse Remitting Multiple Sclerosis. I had MS before Jack Osbourne made it look cool. My body went through a full check list of symptoms. Which wasn’t fun at the time, but it made being diagnosed easy. MRI lesions on the brain- check. Numb left side- check. Unable to balance- check.(it became a kind of party trick for my roommates and I. Watch me walk like a drunk. It was funny) Electric shocks when ever I turn my head- check. Extreme fatigue- check and check. Seeing Double- check. I remember when the eye doctor ( I forget his proper title) told me sadly that I had demyelination behind my right retina. I was so happy that I wasn’t making seeing double up. I thanked him. He looked at me oddly. I needed evidence that what I was experiencing was not in my head, well it is in my head- but you know. I had some friends say some really insulting things, not believing that what I was experiencing was true. I had to leave my job, until my body became healthy again. It has taken about 10 months before I it began to feel well again. I thought in August with my return to work, that I have this MS thing under control, it is a secondary problem. I can ignore it. I will take my needle at night. I will attempt at eating healthy, I will work out and I will have balance in my life. This MS thing will not bother me for years! Wrong. Every time, I don’t get enough rest or I push myself too far, my body reacts. My legs are heavier, especially the left side, my fingers tingle and the fatigue sets in again. I crash. I have one crash day a week and every time I crash, I am surprised. It is different than just being tired, because tired you can push through it. I feel like it is comparable to not sleeping for about a week.(what most new mothers go through) Your limbs are heavy and every thought is fuzzy. I become very sensitive to sound. It feels like everyone is shouting in my ear. All sounds are heightened. Every time I have a crash day, I get a little low. I think I should be used to this, but I am not. I don’t know if I ever want to fully get used to it because then that means part of me has expected that this is my lot. I feel like my body has betrayed me. I have to fight myself and figure out how to live well with this disease. I have to figure out how to come to peace with the MS. That is my goal this year- to live MS well. It is going to be here and I might as well get used to it. I have always been a positive person and this is my battle. To be positive about MS. I like my outlook on life. I need to learn that I am enough.

Yup that is my goal for my 34 year- To learn that I am enough as I am. The MS has not broken me. I went to a doctor for something and they asked me if I still have hope for myself. What an odd question, but my response surprised me still- Yes, of course. My Doctor said, you will be fine then. I still have hope, but I still feel broken. A lot of work for my 34 year.