MRI’S, Tron and Daft Punk – Going Back to the Grid

Posted on March 21, 2014 by Jamieson Wolf

Two steps at a Time coverI have another MRI coming up on Sunday.

I’ll have to admit that my first MRI was bizarre experience. I didn’t know what to expect. I had watched a YouTube video and read about what the procedure would be like. However, watching something on your computer and actually having to go through it are two different things.

I was in a hospital gown when I walked into the room. I approached the white cylinder with trepidation. The video on YouTube did not prepare me for how big the MRI machine was. It almost took up the whole room. A doctor and technician would watch the progress of the MRI in another room. I was given a lead apron to wear.

They fitted me with a neck brace that would help them take better images of my head and neck. MRI stands for Magnetic Resonance Imaging. It’s scanners use magnetic radiowaves to form images of the body. In my case, they were taking images of my head and neck to see if lesions were present.

I was asked to lay down on a table that slid into a tube. I was told that I would hear a lot of noise but I had to remain stationary at all times. It was a little uncomfortable for me as I am somewhat claustrophobic in small spaces; I got over that really quickly as I had no choice.

The tube reminded me of Tron for some reason. To calm myself, I pretended that I was going into the Gaming Arena, even though they don’t get there through tubes. Hey, whatever works right? It was mind over matter at that point.

Then the scanners started rolling around me and I will admit to being afraid, just for a moment. Then I just thought of the thrumming of the machine as if it were techno music, or electronica, heavy on the beat.

Inspired by my being in a Tron tube, heading for the Gaming Arena, I thought of Daft Punk who had done the soundtrack to Tron Legacy. With the heavy beat, however, I was reminded more of Daft Punk’s album Homework.

I don’t remember how long it lasted for. I was in a tube filled with light, wearing a neck camera, surrounded by noise. It was no time at all and forever at the same time. When they finally rolled me out of the tube, I shook my head and let my Tron and Daft Punk fantasy fall away.

At my six month check up in February, I finally had a chance to see my MRI. It was weird seeing inside my own head, at the white circles that stood out so brightly against the greyed out shapes of my brain. There were several of them, one that looked like as big as a golf ball, all bright like lights or stars on the MRI images.

The MRI that I am having on Sunday will be able to show the doctors whether or not my medication has had any affect or whether or not I have new lesion’s in my brain. I will have to have an MRI on a regular basis, so this is something I’ll have to get used to.

However, this time I’m not worried. I know what to expect, what will happen. Thankfully, I still have lots of time to listen to some Daft Punk and watch Tron and Tron: Legacy so that the images and music are fresh in my head.

This Sunday, while the MRI is being done, I’ll just head back to the Grid.

Awesome.

Posted in Daft Punk, MRI's, Tron, Tron Legacy | Leave a comment

Relax Days

Posted on March 15, 2014 by Jamieson Wolf

Two steps at a Time coverThe other day, my right side was numb upon waking.

My arm and right leg were heavy, as if I was moving through jello. I was able to get out and go to work without my cane. The numbness worried me though. It went away through out the morning but it took a while. I’ve had trouble typing and my arms tense up right away when I click away at the keys.

Last night I felt dizzy and my whole body was tense. I went to bed hoping that I would wake up fine. I did, more or less, but my entire body was even more tense than before. It was as if I’d had a full body spasm.

I went out briefly this morning and it was only down the street, but walking there was difficult. I could only really take small steps and my muscles hurt. I was tripping over everything. I came home and have been giving my body what it needs: relaxation, taking it easy. Not writing or working, but just watching television and reading a book.

Relaxation has become very hard for me to do. Before the MS hit, I would gleefully sit and read a book for hours or indulge in tons of television. Now I barely read at all and don’t even have cable.  I have to be writing all the time, have to be doing something, have to be out and about living life to the fullest. I’ve forgotten that the indulgences are a part of living to the fullest.

I’m so fearful of having a relapse that I want to fill my life up with everything I can, to live in the moment. Thankfully, my body has other ideas. It forces me to slow down sometimes, whether I like it or not.

I need to realise that it’s okay to slow down, that I will have my days where my body is working and other days where it’s not. I can’t keep pushing myself to the point where my body rebels. I also can’t live my life in fear and have to find a balance. I need to find the balance between the work and the play and to enjoy everything.

I’ve taken a few steps to make sure that I indulge: I’ve started playing computer games again, something I haven’t done in years and have gotten NetFlix. Both of those force me to sit, to enjoy and to be entertained. I’m also reading more and not counting each moment not spent writing as wasted.

Instead, it’s a moment that I’ve been able to live, to enjoy, to indulge. I’m relaxing when my body needs it and have learned to relax even when it doesn’t-and that’s pretty freaking awesome.

Posted in discomfort, Fatique, Spasms, Walking | Leave a comment

Remembering to Slow Down

Posted on March 12, 2014 by Jamieson Wolf

Two steps at a Time coverAt my six month appointment, my doctor was very impressed by what I’ve managed to do. He did mention, however, that I should do more exercise. Once again, he recommended Yoga.

It’s confusing to me why doctors and nurses would suggest Yoga to people with MS as most of us have balance issues. While I was working on myself and working hard to get to a good place again, I had no balance. That came over time when my body was strong enough.

Lately, my balance has greatly improved. I’m able to ride on the bus standing up holding on to a pole if there are no seats. I’ve been walking without my cane for almost two months. I’ve been doing so well that when I was given a chance to try out Yoga this past Sunday, I went for it.

It was going well for the first few poses. I was able to hold my balance and do the stretches. It was as we were transitioning a position on the ground to a standing position that I started to have problems. I couldn’t move my legs. I tried to stretch them out, to see if I could bring myself down to the mat, but they wouldn’t do what I wanted them to.

I had done too much, had pushed my body past what it was able to do. As I tried to correct myself, I fell. I was up one moment and then I was down. I literally fell on my face and slid a little bit along the hardwood floor.

My glasses cut into my face cutting a slash of skin from it and I got burns on my nose IMG-20140309-01433and chin from the floor. I bruised my knees and wrenched my left shoulder. I left the class right away to get band aid and disinfectant and to soothe my wounded pride. At first, I was prepared to swear off exercise aside from walking. I should never have tried, never have bothered…

I stopped this train of thought almost right away. It’s not that I should never have tried. How else am I to find out what I am capable of? No, what I should have done is found a gym or studio or instructor that was qualified to deal with people with MS.

I should have done my research instead of just jumping in head first. Just because I have Multiple Sclerosis and Cerebral Palsy doesn’t mean that I can’t do anything I want to do. I can do almost anything I want to; I just have to be careful about how I do them.

So I’m looking into proper studios, Tai Chi, Qigong, stretches I can do at home. There are all kinds of alternatives to yoga; I just have to find the one that works for me.

I took a picture of myself when I returned home. Some of you may wonder at this, but it serves a purpose. It’s a reminder.  The next time I go to rush into something and not take the time to think about my health first, I will look at this picture and remember and slow down and think things through.

Posted in Falling, Muscles | Leave a comment

Grooving with Joy

Posted on February 18, 2014 by Jamieson Wolf

Two steps at a Time cover Today marks the start of four weeks I’ve walked without my cane. For the first two weeks, I brought with me to work and when I went out. For the past week and a half, I’ve left it at home.

I’ve been asked why I’m able to do that now. I think it’s actually a combination of things: I’ve changed my diet drastically: giving up dairy and eating way less junk food and eating a lot more vegetables and salads. I’ve cut out aspartame and diet drinks and I’m drinking a lot more organic fruit juice. I quit smoking full time in June and social smoking in November.

Of course, I’ve also changed how I use my time. I make sure to get eight or nine hours of sleep a night.  I balance what I need to do, making sure I give myself time to rest and not fill up every single moment. That’s been the most difficult for me; I thought it would be giving up dairy.

I’ve also started walking part way home from work to give my legs more strength. I take the two busses I need to in the morning. On the way home, I get off at my street and walk home. It’s a long street, but the exercise is good for my legs.

The medications are also making a huge difference. I take Backlofen for the spasms that the MS and CP cause. I also take a daily injection called Copaxone.

However, as well as I’m doing, I’m still dealing with the fatigue, the memory problems, fighting with my brain to remember more often. So I’m doing something to help with that. I joined the choir at work. My thought is that in memorizing songs, the lyrics and the music they belong to, it will help me remember more, keep my brain awake.

I don’t know what the chances are of my having a relapse. I still have daily symptoms like speech problems, fatigue, etc, have been lucky not to have had an episode since January of last year.

I was diagnosed with Relapse and Remitting MS with a catch: since I only had one episode and haven’t relapsed yet, I was told that what I had was actually called CIS, or Clinically Isolated Syndrome. It’s still MS, but just another form of it.

I don’t know when or if I will have a relapse. So instead of waiting around for it to possibly happen, I’ve adopted this philosophy: live every moment with joy. Whether that’s by writing, visiting with friends and family, sitting with a good book, it doesn’t matter. As long as I find joy or give it to others, that’s what matters most to me right now.

And you know what? That’s pretty awesome.

Posted in Brain Fog, dairy, joy, Walking | Leave a comment

A Fine Balance

Posted on February 9, 2014 by Jamieson Wolf

Two steps at a Time coverThough I’ve been doing a lot better lately, I often feel as if I’m being stalked by the Sandman.

The fatigue hits without warning. I can have eight or nine hours of sleep, but it will make no difference. I’ll go to sleep tired and wake more tired than I was. I have trouble keeping my eyes open and have to fight to stay awake.

I’ll employ different means to stay awake from candy to music, expresso in my coffee in the morning to lots of chocolate. It keeps me awake during the day and candy and chocolate are always a good thing, right?

Those are the days where writing is most difficult for me. The words take forever to find their way out of my brain and onto the page. They’re inside, waiting to come out but it’s as if they are wrapped in a bubble that I can’t pop.

Those are the days where I forget things, where the wrong thing comes out of my mouth. Where I’m not clear on what I want to say and don’t know how to say it, where I’m easily distracted and forget what I was doing; but you know what? That’s okay.

For every day my brain is filled with sand, I’ll have a day where it will be clear, where I’m not fighting sleep or fatigue, where I’m myself again. I’ve learned that it’s a fine balance between the two and to relish the days where my brain is clear, where it’s functioning at full capacity.

On those days, I write to my hearts content. Not nearly as much as I used to write, but at least I’m writing.

On the days where the fatigue is at its highest, where my brain and body won’t let me do what I want to do, I relax. I read a book, I watch television. I engage in the art of relaxation.

I’ve learned that it’s pointless to get angry at myself or be frustrated by what I want to do but can’t. Instead, I just do other things I want to do that let my body have the rest it needs. I’ve realised that it’s still possible to do everything I want to do, just not all at once.

It may be a fine balance, but I’m living life and that is pretty awesome indeed.

Posted in Brain Fog, Fatique | Leave a comment

A Grateful Celebration

Posted on January 25, 2014 by Jamieson Wolf

Two steps at a Time coverToday was the first time I’d allowed myself beer since December. I’ve been afraid to drink it lately.

I always remember the time over the holiday season when I went to have a beer and couldn’t stand up. However, I was celebrating today. It’s been a week that I’ve walked without the cane. I’ve had a whole week where I standing and walking better.

Today was a celebration for me. At work, one of the women I know gave me a high ten, both hands in the air, because she knew it had been a week. Other people noticed I was doing better. I even played an epic game of Rock, Paper, Scissors. It was a great day, a wonderful one.

I even allowed myself to have some dairy. There were two cakes: a Red Velvet cake, which I have never properly tasted and a wonderful carrot cake. I ended up with a big piece of the Red Velvet, and had to share most of it, but I had half the icing. I even treated myself to a cupcake. All of them were lovely.

When I met up with my friend tonight for drinks, I decided that I have a beer and see how I was afterwards. That would let me know how my body was.

I was able to handle the beer and better still, I was able to walk down the stairs to the bathroom. It was down two small flights of stairs. They weren’t near as intimidating as they would have been normally.

I even stayed for another beer and repeated the process. Two times I met with success. I decided that I didn’t want to test it with a third beer but the point is that two beers and gone home without my cane and I wasn’t wobbly, dizzy or off balance. I was okay. Better than okay.

It’s funny to think of today being a celebration. However, that’s what it was for me. I did everything you’re supposed to do in a good party: Have fun, spend time with people you like and love, have cake (very important!), take part in some party games and, if you can, have some libation. Sure, I did it over the course of a whole day, not all at one party, but I did it.

All day long, it’s as if a candle or a flame has been burning bright inside of me. So I’ve got the cake, people, awesome food, libation and the candles, but we’re still missing one thing. You’re supposed to get a present when you celebrate something right?

So I’m celebrating by giving myself this blog post. So I can remember that anything is possible and I have much to celebrate and so much to be grateful for, and that is so totally awesome.

Posted in alcohol, Canes | Leave a comment

Without Hugo

Posted on January 21, 2014 by Jamieson Wolf

Two steps at a Time coverI’ve learned something about myself and I really love when that happens. After my ride on the bus the other day, I decided to see what my legs could do. I decided to see what I was truly capable of.

I’ve walked with a cane since January of last year. There was a brief period in March where I walked without one, but then the balance issues returned and the falls worsened. Up until I took bus ride the other day where I didn’t fall or lose my balance, I depended on it, needed it, was naked without it.

I’ve had a love and hate relationship with my cane. At first, I really hated the fact that I had to walk with one. When I was able to hang it up in March, I was thrilled beyond belief. I still experienced times when my balance was a little off, where my body was unsure of itself, but I soldiered on.

When the falls began, it was devastating. They happened with no notice and no warning, just a brief moment, a split second and I would be down, or the ground would rush up to meet me. I fell into any number of things, in a variety of ways. The falls always happened, even though I had my cane.

I kept it with me, however, and still depended on it. It came everywhere. I can’t be too mad at it though; I wrote one of my favourite poems because of it (Children of the Sphinx). It did keep me safe in a lot of situations. It gave me comfort, like I carried a blanket with me.

However, after that bus ride, I was inspired to try and see if I could walk without it. I don’t know why I was afraid to try again. It’s been my third leg for so long now that walking without it was but a fond memory.

When this all started, in what seems like a lifetime ago, busses were the worst for me. I could barely manage to get to the prioritized seating. Balance was horrible for me. I had none and the slightest movement would send me flying. I fell into people, into poles, onto people. I had to be sitting when the bus began moving and even then, I still wobbled.

Riding the bus and being able to stand and hold on to the pole gave me the courage I needed. I was better, stronger, both in spirit and mind. So I decided to see what I could do. I didn’t use my cane at all at work Thursday or Friday. I normally take it with me if I go down for lunch, but I didn’t.

It was freeing just going down to lunch that way and a little surreal. It was almost like being in a dream for a bit. I got even braver. When I went out on Saturday, I brought my cane with me, but I didn’t use it. I went to class and hung it on the coat rack. I almost forgot it when I left and had to go back to retrieve it; and that’s just kind of awesome.

On Sunday, I was even more brave, so much so that surprised myself: I went out without my cane and left it at home.

That was the first time I’ve been without my cane for over a year. I went to the mall to give myself a true test, to see if I could handle the people, handle the walking and getting home in one piece. It was probably one of the most frightening things I’ve ever done. I was surprised at missing Hugo a little bit. I can’t be the only person that names their cane, right?

I went up and down escalators, into shops and even treated myself to lunch at the food court. I can’t describe what it was like to be cane-less, to being strong enough to do that. It was really just a simple outing, but it was like discovering the world again, in a way.

Today, I brought my cane to work with me, but left it at my desk. When I rode the bus, Hugo was tucked over my arm.

Now, I’m under no illusions that this will be permanent. Given how my symptoms fluctuate, it won’t be. However, until then, I’ve come to a compromise with Hugo:I’ll take him out with me, but I’ll carry him. I won’t use him unless I need to. The falls will still happen, I may still have balance issues, but I won’t be afraid.

What I learned about myself was this: I was hanging on to Hugo more than he was helping me. He was holding me back. I was holding myself back.  I have to myself, that I was able to read the current strength of my body.

With each step and every one after it, I discovered what I was truly capable of.

Posted in Canes, Walking | 1 Comment

Hanging On for the Ride

Posted on January 16, 2014 by Jamieson Wolf

Two steps at a Time coverThe ups and downs of my body like a ride of sorts. Since I can’t drive, I think of it like a bus ride.

There are days where I feel like I’m almost myself again, where my body is almost like it was. I can walk without my cane and I’m just carrying it. I go without it at home and short distances at work.

Then there are the other days, where I even take the cane to the washroom, just to be careful, it just depends on my body that day.

Today was an incredible day. I had to stand on all the busses I took to and from work. No one got up to give me a seat and only one driver got on the intercom to ask for someone to give me a priority seat. Nobody got up, but that’s okay.

I had to hold on to the poles as the bus moved. That’s something I haven’t been able to do in more than a year.

I rode the bus like I used to: squashed in and standing as the bus moved along. It was odd and kind of freeing being able to do that again. I proved I could do it. I got even more daring at lunch, leaving it at my desk. I figured that if I could remain upright on a moving bus, I could do anything.

I don’t know what tomorrow will bring me,  what my body will do, but I’m thankful for today.  I remained standing on a moving bus and didn’t fall down. That made me feel like a super hero.

I wonder what my name would be? The Wolf? Mr. Awesome? Hmmm, probably need to work on that.

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Falling but Thankful

Posted on January 7, 2014 by Jamieson Wolf

Two steps at a Time coverI fell tonight.

It wasn’t coming home along the sidewalks that have become ice rinks. It wasn’t as I was taking the bus or picking up something at the grocery store. It was in my home.

I came in the front door and put what I had bought at the grocery store on the counter. Then I went to walk over to the couch and the floor came up to meet me.

I tried to get up, trying to brace myself against the kitchen counter, but couldn’t. My legs gave out under me and I fell back to the floor. They wouldn’t work, wouldn’t move. As I lay there on my kitchen floor, my legs started spasming.

It was beyond anything I had felt before, as if my legs were filled with hot knifes and needles, broken pieces of glass.

I could do nothing. All I could do was lay there, still in my winter coat, and let the spasms pass. It took about fifteen minutes, lasting longer than any spasm I’ve had before and I’ve had plenty. Before the Multiple Sclerosis hit and Max showed his face, the Cerebral Palsy spasmed many times through out the day, but now like this. Cybil Paulsen’s spasms were painful but brief, little reminders that he was there. This was something else all together.

I lay on the kitchen floor and waited. I counted through the pain, trying to control my breathing, trying to ignore my legs. They weren’t moving. Though they remained still, it felt as if they were moving all over the place. I talked to them, begged them. I just kept repeating “Stop it, stop it, stop it, please stop it.”

Eventually, they listened. The spasms stopped.

I lay there for a further ten minutes after the spasms stopped because I wanted to make sure they were done, that they had gone away. My legs were tree trunks of muscles and when I stood, I cried out. Pain flared in my legs, hot and bright.

I stood there for a moment, testing the strength of my legs. I took a step and then two more. Then another.

I shuffled to the bathroom to have a warm bath to see if that would help relax my legs a bit and it did. I had trouble getting into the tub and almost slipped and fell into the water but caught myself. Needless to say, I didn’t stay in the bath for very long.

I made a cup of tea. I sat with a book. My leg muscles had hardened and are still hardened masses of muscle even as I write this. However, all this is okay. I did what I could not have done a year ago.

I got up. I was not confined to a bed or to my couch. I was not a prisoner inside my own body. I got up and I will get up again.

For that, I am thankful.

Posted in Muscles, Spasms | Leave a comment

One Year Ago I Met Me

Posted on December 30, 2013 by Jamieson Wolf

Two steps at a Time coverTonight marks one year.

In 2012, when I woke on December 31st, my life as I knew it changed forever. I remember the evening  of the 30th well. It’s been haunting me all day.

On December 30th, 2012, I came home from work and made dinner. I watched an episode of Gilmore Girls. I read a little and wrote a lot. I was working on The Other Side of Oz and had reached a crucial plot point.

I had some chocolate and then read until bedtime. It was a normal evening, except for one thing. Every time I went to have a cigarette, my hand would go numb. I would lose all feeling in my digits and I would drop the cigarette. My left arm had been sore all day-it was so bad that I had taken some robaxoset. I never took anything stronger than ibuprofen.

My whole left arm ached. It throbbed like a tooth and nothing I did eased the pain. I switched to the other hand, but dropped it too. Eventually I stopped smoking all together that evening.

I made a tea and took my book to bed. I read until I was tired and went to sleep. When I woke, the world I had known was gone.

I remember waking, stumbling into the kitchen. I could barely pour myself a coffee.

I took a few sips. I always had coffee before I did anything. I remember sitting for a bit, hoping the dizziness would go away. Then something rebelled in my stomach. I ran to the kitchen sink and was violently ill.  I called in sick to work and went back to bed. I thought if I slept for a few more hours, I would be okay.

When I woke again, it was worse. I could barely sit up, the whole room spun around me. I knew something was wrong.

It took eight months. Hundreds of days, thousands of hours, not knowing. It was misdiagnosed as Labryntitius but, as it continued, I knew it was something different. From January until April, it didn’t have a name. Then it did.

After more testing, more appointments, more uncertainty and another four months of waiting,  I knew what kind of Multiple Sclerosis I had. I knew what I would have to fight. Now I could begin again.

It’s been a year of tension and angst, depression and heartache. It’s been a year of uncertainty, regret and remorse. Tonight I am letting all of that go.

I had to learn to do everything again and I did. I had to learn to walk again, speak again, write again, eat again. I had to relearn how to do everything I used to know how to do. It has been a long journey and an uphill climb. It has been a struggle, but I learnt a lot about myself along the way.

I found out what I am truly capable of, what challenges I can overcome. I learned that anything is possible if you put your mind to it, no matter how big the goal, even if it’s taking that next step.

Tonight marks one year when my life changed and I got to know myself again. And you know what? I really like the person I’ve become.

He’s pretty freaking awesome.

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