Living My Best Life Two Steps at a Time

I was talking to one of my friends about the pain levels I live with.

The pain has been so bad lately. In the morning, I have to sit down while I brush my teeth, just so that I can give my legs a rest. My legs spasm throughout the night and it makes walking challenging, it has just been so much pain lately. It’s almost been too much. I’m in pain all day, every day and it only seems to be growing.

I no longer know whether it’s the Cerebral Palsy (Cybil Paulsen) or my Multiple Sclerosis (Max Shadow). They are both spastic in nature and I’ve lost the ability to know the difference in between the types of spasms I have. I just know that I wake up in pain and I go to bed in pain. However, I don’t see myself as suffering. I’ve just known pain for so long that it’s just something I live with at this point.

One of my friends asked me if there was any way around having to experience the pain and it was kind of like a smack in the face. I felt like asking them if they were serious. I live with disease and a disability and they cause pain. I already do so much to try and counteract that pain. Rather than get upset, I decided to use it as a teaching moment. If I don’t say anything, they don’t know.

I am taking medication to help ease the spasms and the pain, but it can only do so much. I workout three times a week and walk whenever I can, with a cane if necessary. I eat mostly healthy with attention paid to the amount of whole foods I eat like meats and vegetables. I’ve also introduced carbs and grains back into my diet. That’s not to say that I don’t partake in sweets, but the fact that I still have chocolate from Easter should tell you something. That’s how I take care of my body.

I try to take care of my mind by reading as much as I can and writing as much as I can. I don’t turn to non-fiction as much as I should; I’m more comfortable behind the smokescreen of fiction but any kind of writing helps as does my painting. Both these crafts turn off my mind for a little bit and just let it run free. I’ve also started journaling, writing down thoughts on the day and at least one positive thing that happened that day. That’s how I take care of my mind.

As for my spirit? Well, the painting and writing help as those skills come from my spirit, but I also read Tarot cards to give me guidance throughout the day and the week. I have a large variety of crystals and each of them have their uses for healing and centring my spirit. I have several mala’s and meditate at least twice a day. I also listen to music whenever I get the chance. That is how I take care of my spirit.

I explained all of this to my friend, and I think they understood to the best of their ability. It’s hard to explain what it’s really like to live with constant pain. I often with that I had a switch where I could turn it off, or at least turn it down to a minimum; but I don’t have anything like that. All I can do is be as kind to my body and myself and continue trying to live my best life the only way I know how.

The pain will always be there but I’m doing everything I can to live my best life and all I can do is take it one, or two, steps at a time.

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One Day at A Time

Like many people, I’ve been waiting patiently.

This virus has taken over our lives and I personally view the vaccine as a step towards taking back some control. I know it’s not a cure all and we’ll still have to wear masks for a time until herd immunity is achieved, but I would feel safer.

I’ve been watching the vaccine roll out with anticipation. I knew that as a person living with relapse and remitting Multiple Sclerosis and Cerebral Palsy that I would be eligible in phase two. I’ve been watching for new about when phase two would begin.

This morning I was thrilled when “people with highest health risk conditions and their caregivers” was added to the dropdown menu! I clicked start and then…got nowhere fast. It said that I would be contacted by my local health practitioner or doctor; the only problem is that I don’t have one.

Again, like many people, I’ve been waiting a long time to find a family doctor. I contacted my neurologist who told me that the MS Clinic does not deal with vaccinations and that the website gives out misinformation.

I called the toll-free number anyways hoping that I would be able to speak to someone. After waiting for over an hour, I spoke to someone who said that she couldn’t help me and that they were only booking for people over 55 at this time. I told her that phase two had just opened but she was unable to help me.

She did give me the number for Ontario Public Health. The woman I spoke to there listened to what I had been through so far and put me on hold for a moment while she spoke to her supervisor. When she came back, she apologized and said that I should never have been referred to them but what she had found out was that phase two would be rolling out in stages.

She apologized that the website wasn’t clear and that there is no real information given in terms of phase two. She said to keep checking back for the next two weeks to see when the update on the information for the phase two roll out was posted.

As someone who lives with MS, I know that the worst thing for me is stress. It sets off my symptoms and makes it difficult for me to function. I’ve spent an entire day stressed out while trying to work at home at the same time. After today, I don’t feel like I’m being seen.

Until they figure out what they need to do, I’ll just focus on sparkling on and focus on the positive. I have my husband, my family, my friends. My life is full of things to be grateful for. I will focus on that for now until I can get my vaccine.

All I can do is take things one day at a time.

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I’m On TV! Let’s Chat with Derick Fage

Hey Everyone!

Check this out! I was on TV!

I was on Let’s Chat with Derick Fage. During the episode, we talk about what it’s been like living with Multiple Sclerosis and Cerebral Palsy and what my journey has been like.

Click below to watch and I hop you enjoy it!

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Happy Birthday Little Yellow Magnet!

On March 3rd, 2019, Little Yellow Magnet was published and sent out into the world. It’s the most difficult book that I’ve ever written. Thus, it’s also the one that I’m most proud of.

In 2018 I sat down to write a little book on positivity. People were always asking me how I stayed so positive living with Multiple Sclerosis and Cerebral Palsy. Being a writer, I thought I would write a book on positivity and positive thinking that would hopefully help others.

I called it Mastering Self, see what I did there? I thought to link the title to MS in some way as the MS had truly taught me what I was capable of. The only problem? I got to page twenty-nine before I realized that it wasn’t working.

By focusing on only the positive elements of my experiences with Multiple Sclerosis, I was ignoring all the work that I had done on myself and ignoring everything that I had been through. Just focusing on the positive wasn’t working. It was like the Coles Notes version of my life.

I had learned a lot from the dark. I learned what I’m capable of and how to sparkle as brightly as the stars. In the darkness, I could finally see how brightly I shone. I had been through so much to get to where I was that I knew that I had to write everything, every moment, not just the happy ones.

When I started writing Little Yellow Magnet, really started, it felt like I was coming home to myself in a way. Someone asked me during the writing of it why I felt I had to write the book. I said that it wasn’t so much that I felt I had to. I was compelled to write it. It was my hope that if Little Yellow Magnet helped just one person, then my book had fulfilled its purpose.

It was so wonderful to let everything out, too. During the writing of Little Yellow Magnet, I realised how much I had been holding on to, how much I still hadn’t let go of. The memoir was a cathartic adventure through my life and I could finally see how very high I had been able to climb.

To celebrate Little Yellow Magnet’s second Birthday, I have two gifts for you.

The first one is that you can read Little Yellow Magnet for free. From March 4th to March 8th, you can download the ebook of Little Yellow Magnet from Amazon. If you read it, all I ask is that you review it on Amazon, or anywhere else you like to post book reviews. You can download it here:

The second gift that I have for you is that you can also read the original seed for Little Yellow Magnet: Mastering Self. It contains all twenty-nine pages of the original attempt at what became Little Yellow Magnet. I like how you can see what the memoir would become, even within those twenty-nine pages. It’s like a companion to the memoir, the seed that grew into full bloom.

I hope you enjoy it and that it inspires you to read Little Yellow Magnet so you can find what happened. You can download it here free. It’s in PDF format and free to read.

Little Yellow Magnet is available in ebook, paperback and audiobook. Whichever way you read it, I hope that the story takes you on an adventure.

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On Becoming Aware

Today is the first day in MS Awareness Month.

When I woke this morning, I had no idea that it was MS Awareness month. I put on an audiobook to listen to in the background and chose to listen to the audiobook of my memoir Little Yellow Magnet. I listen to it from time to time when I need to remind myself of how much I’ve accomplished and how much I’ve been through. I listen to the audiobook when I need a reminder of how strong I am and everything I’ve overcome.

Midway through the day, I saw a Facebook post about it being the first day in MS Awareness Month and I thought that life is funny like that, sometimes. That gave me a new lens to listen to my memoir with. Would anything have been different? Would I have done anything differently?

Before I was struck with MS, my twin brother had been diagnosed with the disease. I didn’t look up anything or read anything because as far as I was concerned, his diagnosis didn’t have anything to do with me. After my diagnosis, I was so afraid of what had happened to my world and even more, what I had become. At the time, it didn’t even occur to me to reach out to my brother for help a voice of reason. He had been living with his MS for over a year by the point when mine made itself known. I wish that I had reached out to him to find out what it was like for him.

However, the journey I’ve been on with Multiple Sclerosis has been my own. Every step had felt like I’ve been climbing a flat mountain. My feet are flat on the ground and yet at the same time, I’m standing tall on the peak of a mountain, high up in the air, and I can feel the wind caressing my face. I can look back at everything I’ve done and all that I’ve accomplished. It’s hard to believe that I’ve lived with this disease for seven years. I can’t believe that it’s been that long and yet when I listen to the audiobook, read by the talented Tony Armistead, I know that it’s true.

I remember the first time that I became aware of my Multiple Sclerosis. I knew something was wrong when I started to fall with no reason. I fell all over the place, more than usual. I fell at work once getting Christmas decorations for my cubicle. I fell at home, with no reason and no warning. I knew something was wrong, but I didn’t know what. I knew that it was more than my Cerebral Palsy. It has its own challenges but falling at random was not normal for me.

I think when I really became totally aware of my MS was after my official diagnosis. I knew at that point that I would have to acknowledge it, that I would have to get to know it intimately and that I would have to come to peace with it. That last part took me a long time to do and there are some days where I’m still fighting against my MS and my CP. However, I’m aware of it. I couldn’t not be.

Throughout the journey that I’ve been on, I’ve learned a lot about myself and what I’m capable of. In the end, I still come to the same conclusion. I’m grateful for what the MS gave me. It was only after I became aware of it and chose to try and live a better life that I really and truly started living. I think back on my life before MS and I know that I was a completely different person that I am now. I’m immensely proud of the person I was and the person I became. I’m even more proud of the person that I’m becoming.

You can get your copy of Little Yellow Magnet in ebook, paperback and audiobook here:

https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=&sr=

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On What You Can’t See

I was asked to speak at a conference at work about what it is like to live with two invisible disabilities.

I immediately said yes. I’m open about my disabilities; heck, I write about it on here for everyone to read. I’ve given talks to small groups before but never one the size of todays group. Also, they are my coworkers. That added another aspect to consider. How far did I let people in? How much was too much?

In the end, I decided that the best path forward was to be completely honest; it’s a lot easier that way. The talk was well received and it’s my hope that people learned something. Read my talk below and I hope you enjoy it!

I live with two invisible disabilities. I was born with Spastic Cerebral Palsy and in 2014, after nearly a year of being ill and not knowing why, I was diagnosed with Relapse and Remitting Multiple Sclerosis.

Both of my disabilities cause their own challenges. I am in pain every day. My Cerebral Paly and my Multiple Sclerosis both cause spasms but there are a host of different things I deal with on a given day which include crushing fatigue, brain fog and difficulty speaking. Multiple Sclerosis has a list of twenty-eight different symptoms: fatigue, vision problems, tremors, numbness, cognitive problems, dizziness, vertigo and more. I’ve experienced all of them. 

There are days where I have difficulty walking and other days where it takes almost all the strength I have just to get out of bed and get dressed. There are others where it’s like I’m looking at the world through a thick layer of glass where nothing looks clear. Having both Cerebral Palsy and Multiple Sclerosis is not supposed to be medically possible, according to my neurologist. I guess I’ve always done things my way.

I find that because both of my disabilities are invisible, people really react when I walk with my cane. They often asked what happened to me and when I tell them about having Cerebral Palsy and Multiple Sclerosis, the response that I get most often is “You don’t look sick.” When I explain that I am on medication, I often get told “So that’s okay then, you’re cured, right?” When I explain that neither of my disabilities will ever go away, the look I get back is one wonder.

I’m often told that I’m brave for living the way I do. I can honestly say that bravery has nothing to do with it. I do have a will to live despite the pain, the fatigue and not knowing what one day will look like when I wake up in the morning. There are many joys to experience in any given day.

I’ve used positivity to get through my challenges. My motto is sparkle on because I’ve learned that we can only see the stars in the dark. I try to overcome my limitations every day with positive thinking and it helps to a degree. However, on the days where you’ve seen me smiling, that might have been a day where I was in a lot of pain. Or maybe those days where I might seem down? Those are days where it’s taking all my effort to concentrate because of chronic fatigue. On those days where I seem quiet? It’s usually because I am having difficulty speaking and I’m using my words sparingly.

When you look at me, you have no idea what I’m going through. And you know what? That’s okay. One of the reasons I’m so open about living with my disabilities is that if I don’t say anything, you won’t know. My hope is that by being so open about living with Cerebral Palsy and Multiple Sclerosis, it will make you aware that there are others around you that are living with any number of invisible disabilities and you have no idea.

In the end, I just try to take things one day at a time. I don’t know any other way to do it. Thanks everyone and sparkle on!

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On Forgetting Fear

I forgot and that’s the most amazing thing.

On December 31st, 2012 I woke and my body was not my own. I was groggy and when I tried to stand, I ended up falling down again. As I made my way to my coffee pot, I fell into my fridge and then into my stove. I remember standing again and I poured myself a cup of coffee and lit a cigarette. After only a sip and a few puffs, I was violently ill.

It was the fist day in what seemed like forever. It was the first day that the Multiple Sclerosis made itself known. I couldn’t walk and had gone temporarily blind. Eventually, half my body would be frozen. I would have to learn to walk again with the aid of a cane. I also had to relearn how to speak and how to type. It was the beginning of a long process of getting to know who I was again and who I was meant to be.

That was a long way away, however. On New Years Day in 2013, I thought my life was over. I didn’t know what was causing this uproar in my body. I only thought of sleeping, of giving in to the darkness and letting it take me away. I only thought of giving up and letting go.

For a long time, I remembered that moment of fear and it rode on my shoulders, following me wherever I would go. I was afraid of life and what could happen to me. Of what was in my body and what it could do to me.

I gave that day a lot of power over me. For a few years, New Years Eve day was one of immense fear for me. I had the mistaken idea that the MS would come to finish me off, that I would have another relapse and that my life as I knew it would change again. That it would take my life from me.

I’m not sure when I started to forget the power that December 31st had over me. I can’t pinpoint the exact moment, but over time the fear faded and I didn’t approach the end of the year with fear but with anticipation. It was another chance to begin again, not another chance to be afraid.

Even so, letting of the fear was difficult. I had become so used to being afraid, to being unsure. It took a few years, but soon, it was a day of celebration. I think that the multiple sclerosis has taught me who I really am and who I was meant to be all along. Now when I remember what the day brought to me, it is a day of celebration. It is the day I took my first steps toward becoming myself.

Along the way, I’ve forgotten the days that brought fear and loathing to me. I’ve forgotten December 31st, I’ve forgotten how dark April and May used to be and now I look at August 21st, the day before my birthday when I received my diagnosis, as a day of becoming instead of one of fear.

I’ve been able to let go of fear and change what those days represent and that all began when I started to forget what December 31st represented. Now, when I remember what the day used to mean to me, I look back at who I was on December 31st, 2012 and I marvel at how far I’ve come and at how much I’ve grown. I can only hope that the new year brings many different opportunities to grow and change and to expand my spirit and my place within the flow of living. I look forward to seeing where I am this year on December 31st 2021 and how much I’ve grown.

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Visible Invisible

I was asked to write an article for work for International Person’s With Disabilities Day. I wrote the following. It was put on the web site at work in a permanent place along with other people’s stories about living with disabilities. I’m very proud of the piece and it got a lot of great reactions. Even better, it got people talking. The theme for this year was invisible disabilities. I didn’t know that when I wrote the article.

I hope you enjoy it.

I often feel as if I am living on an island.

I live with spastic Cerebral Palsy and relapse remitting Multiple Sclerosis. They are both invisible disabilities. They do show themselves from time to time when I have difficulty walking or speaking or trouble with balance and dexterity. On top of the physical ones, I deal with invisible symptoms like brain fog, crushing fatigue, tremors, spasms, blindness and others.

It is like there are two other people living inside my body and I am in a constant battle to gain control of myself. I feel that I’m both seen and not seen. I feel like I’m on an island within myself, that though people see me, they can’t see what I’m going through. Both the Cerebral Palsy and the Multiple Sclerosis come with their own individual challenges and there are many obstacles that I have to overcome in a day. Sometimes, even the most simple of tasks can get the best of me.

It’s one of the reasons I’m so open about living with my disabilities and what I go through on a daily basis. My frame of mind is that knowledge is power. If I’m able to help people understand what I live with, to help them see what it’s like to live with in maybe it will help them to learn something about themselves.

I’m fortunate that within the government, there are so many resources for people who live with disabilities and that most people have been open and accepting of my disabilities. It’s wonderful to work in an atmosphere where I feel seen, where there is little to no judgement. It makes such a huge difference and I don’t feel alone on my island.

However, there were times while working in the government that made me want to retreat to my island sanctuary. There was one instance where a colleague said that I couldn’t possibly have Multiple Sclerosis because I didn’t look sick. I tried to explain to her about some disabilities being invisible, that not everything made its presence known to others, but she kept saying I didn’t look sick. She just didn’t understand no matter what I told her. She shunned me afterwards because she thought I was faking it. When I went to my supervisor and talked to them about it, I was told I was making a big deal out of nothing. I felt dismissed.

When the Multiple Sclerosis first made itself known, I lost the ability to walk, speak or type. I couldn’t see very well either. I was bedridden for a month and a half. I was working for a director at the time. She was understanding at first, but then grew impatient at the amount of time that I was taking off, telling me that I was leaving her in a real bind. I worked hard to get to the point where I was able to walk with a cane so that I could return to work. I tried to do my work to the same standard, but was having difficulty. She told me that if I didn’t improve that she would have to let me go. Thankfully, I was able to find another position and left with my dignity in tact.

I’ve often struggled to be physically accommodated within the government. In one position, I was in a meeting on the sixteenth floor of a building when the fire alarm went off. With my balance and dexterity issues, stairs are my literal downfall. I can go up stairs with no issue but can’t go down. That day, I was told that I was not disabled enough to use the emergency elevator. My supervisor at the time said that I was perfectly capable of walking, so I would take the stairs with everyone else. I’m not sure how I managed it, but I am thankful that one I had three coworkers looking after me, one in front of me, one behind me and one to left of me. I held on to the railing for dear life, my cane tucked under my arm. When I got to the main floor, my body was completely shot.

Yet, for all of those difficulties being disabled in the government, I’ve experienced kindness too. The kindness of people has astounded me, time and time again. I’ve learned a lot about myself and what I’m capable of but especially when to use my voice and when to offer counsel. Most of all, even though my island still sits within me, surrounded by water and the whisper of leaves, I don’t spend nearly as much time there as I used to.

Working in the government while living with a disability can be challenging. However I’m accommodated now in such a way that makes my working life manageable. In the government, I feel seen. Though my disabilities are invisible, I am not.

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Have Cane Will Travel

The first snowfall may be pretty, but it also brings a host of other problems

I know that I have to be careful when I’m out and about walking in the winter. There is ice, the sidewalks aren’t even and can often be treacherous. I’ve taken to using my cane when I go out and about for my walks now. If I’m outside in the snow, I’ve made a promise to myself that I will always have it with me. That wasn’t always the case.

When I was learning to walk again back in 2013, I used my cane. It was a constant companion and helped me get to and from wherever I was going. After almost a year, when I was finally able to walk without it, I was happy to hang it up in the closet and have rarely taken it out again. I’ve been trying to figure out why this is, and I think it has a lot to do with what it was like during that time of my life.

Back in 2013, I was just trying to stay alive and take it day by day. My cane was my saviour at then. Over time, it became a reminder of the multiple sclerosis and how it had changed my life. I also noticed that people treated me differently because of it. I was almost never given a seat on the bus but the moment I got on with a cane, people would give me their seat right away.

I began to miss the days where I was treated like a normal person and not someone that would break in half should a strong wind pick up. I came to view my cane as a symbol of my disease and though I needed it to walk, I hated it.

When I was finally able to stop walking with my cane, it was a joyous day. However, there have been a few times when I wished it had been with me, when I would have relied on it, but I stubbornly pressed on without it. I’ve come to realize that I viewed it as a sign of weakness when it is really a sign of strength.

I’ve come to realize that my issue with my cane really had a lot to do with internalized ableism. I was not strong if I used a cane, I was weak if I had to rely on one. Now let me be clear, I don’t think this of anyone else who uses a mobility device. Only myself.

I have this misguided view of myself and always try to hold myself up to this standard which I have no hope of reaching. I don’t know when the idea took shape, but I thought that if I was using my cane that I was not tackling my disease or disability. I was letting them both win.

In reality, it’s actually the other way around. I’ve come to realise that my mobility device is a sign of strength. It shows the world that no matter what I’m going through, no matter how bad my legs or body are, that I will keep going, that I am mobile.

I need to let go of this internalized ableism, this idea that I’m weak if I rely on my cane, when it is really a sign of my strength.

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Letting Go Of Fear

I’m often surprised by my disabilities.

The other day when I was coming back from a walk, I opened my apartment door and was taking a step inside when my body decided to have a full body spasm. I lost my balance and fell into the kitchen doorway. I bonked my head a bit and bruised my left hand and scared the crap out of my cat. I was more worried about him than I was about myself, which is as if should be.

I was in a lot of pain for the rest of the day and had to remember to be kind to myself and treat myself with kid gloves. I used to hate having to grind everything to a halt when my multiple sclerosis or cerebral palsy made doing anything impossible, but I’ve come to accept it. I have to give my body what it needs.

When I began to fall, there was a moment of fear. I hate that feeling. I hate feeling helpless in my own body when it decides to do what it wants. Then come the questions: what do I think cause the body spasm? What caused me to lose my balance? What did I do the night before that could have triggered it? There is no rhyme or reason to my spasms or my loss of balance. It simply is.

That’s something else I’ve had to come to terms with as well. I used to wonder like everyone else what could have caused it, what I had done to make the spasms happen. I’ve lost my balance quite a few times. There was no warning, I was up and then I was down. I’ve come to accept that the falls just happen, the same as the spasms.

I’ve come to realize that there is a lot of fear when it comes to my symptoms. I never have any idea what my body is going to do or what symptom I will have that day. The days where I have difficulty talking or typing are the most frightening, as are the times where I have difficulty seeing. Then there are the ones like balance and body spasms that creep up unexpectedly.

As much as pain is a constant bedfellow, so is fear. I hate not being in control of my body and having MS and CP makes sure that I am not in control all of the time. I hate living in fear, having been afraid for a lot of my life. It’s a state that I know well.

I’ve also come to realize that I can’t continue to live this way. Pain is one thing, it’s so much a constant that it’s become a dull constant. I can’t live with fear. I hadn’t even realized that fear was so close to the surface, that it was coming along for the ride and colouring my actions and what I would do.

I have to let go of fear. I can’t be afraid to live my life the way I choose, always looking behind me for whatever will come and what I think will try to take me down. However, there’s something I always do and that’s get up and keep going. It may be at a slower pace than before, but I always keep going.

I already feel like I share my body with two other people, with Cybil Paulsen and Max Shadow. I don’t want to imagine a third unseen person living within me. I’ve come to look at Max and Cybil as travellers with me on my journey as opposed to enemies. I can’t let a third unseen being continue to haunt me. Today, I let go of the fear and embrace whatever happens. I have to let it go to the wind because as long as I’m afraid, I’m not really living.  

Today, I will embrace the possibilities and try to move beyond fear. I will let go of thoughts that are holding me back and look toward the future.

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