A Dance with the Waves

Posted on October 27, 2023 by Jamieson Wolf

A neighbour gave me a gentle telling off today.

For the past three weeks, I’ve been going through a multiple sclerosis flare up. I thought I was just tired at first and suffering from burn out. Then that tiredness became exhaustion. I booked a couple of days off work and was looking forward to getting some much-needed rest. When I woke up on the next day, the fatigue has increased. I had slept for over eight hours, but it was as if I hadn’t slept at all.

The brain fog came rolling through my mind like smoke, but this one was different. It felt like it was taking my mind from me, but that I could see it through a cloud of vapour. It would hover just out of reach the more I tried to reach for it. The only way that I could observe my thoughts was to stop reaching and let them come to me.

It was as if my whole body was stoned all the time. I ended up taking a week off work, unable to find my way through this heavy blanket that covered my body and my mind. I started taking Tarazodone for sleeping again and I haven’t had to take that medication for a while now. The insomnia that can sometimes be my companion hasn’t been around. My reason for taking it was to make sure I slept, that my sleep was deep and healing.

Though the Tarazodone made sure I slept, the flare up has yet to go away. It’s different every day, much like my multiple sclerosis. At night, my body is at war with itself as the multiple sclerosis and the cerebral palsy battle it out to see who the supreme ruler can be. I wake with pain even more than usual, but that’s the least of my worries right now.

It’s been ten years since I was diagnosed with relapse and remitting multiple sclerosis and thought I’ve had new lesions; I’ve never had a flare up. That’s a sign of the care that I take of myself, or it’s just luck. Either way, I was hoping that the flare up would be over in a couple of days. It has now stretched on for three weeks.

I’ve had to learn how to balance myself. For the first week, I dealt with my brain fog and fatigue as well as dizziness, balance issues as well as nausea. I was reminded of all those years ago in 2013 when I lost control of my body. I had to learn to speak, walk, type and function all over again. I figured that if I could do it ten years ago, I would do it now.

I’ve been trying to heal by doing the things I love to do. I love my job and my work brings me a lot of satisfaction. I love to write and lose myself in the words I write. I also love to paint and look forward to seeing if I can get what I see in my mind to work upon the canvas. I’ve had to balance what I love. Some days, I’ve been able to work, but then can’t accomplish anything in the afternoon or evenings and others I can. I fit in the writing and the painting when my body is able and my mind is clear and I can handle movement or remain still.

Every day has been different. Some days I’m clearer headed, and my mind feels more my own again. Other days, my body feels stronger, and the fatigue is father away. There are days that I can push through like I always have and I’m able to reach within my mind and part the intense fog, or I can see through the cloud vapors. Everything isn’t completely clear, but it’s clearer, if that makes any sense. Last week, I was able to clean the bathroom, but I couldn’t remember names or places I had been. I went back to work two weeks ago, and my mind has been present, but my body has been rebelling against me.

Wednesday was the worst day that I’ve had with the MS flare up so far. It got progressively worse throughout the day. I had difficulty speaking, that was the first clue something was up. I had to think of the words I wanted to say and then gently push them out of my mouth, as if they were shy to be out and about in public. When I got back from my short walk in the morning, the fatigue slammed into me even harder than before. My head was swimming and indeed, it felt like my whole body was underwater.

I took a very short nap in the afternoon, but the fatigue wouldn’t dissipate. It was all consuming and I wondered how my body could hold a tsunami of emotions and such crushing fatigue. The tiredness took everything from me. If I stayed completely still, I was fine, but the moment I introduced any movement, my body was taken by the waves. I had a difficult time holding on. I was able finish the workday by pushing myself. One more hour, I kept saying, thirty minutes, ten minutes, five minutes, done. When I made it to the end of the workday, I had nothing left to give. I didn’t even have the energy to make something to eat for dinner.

Thankfully, my beautiful husband got takeout for dinner. I could barely finish my meal, but I ate everything I could. I was able to read for a bit, but when the words began swimming across the page, I just put the book down. I wanted to take a bath, but I didn’t trust myself to get in and out of the bathtub. It also involved too much movement. There would be no way I would get any enjoyment out of it.

I knew that I should have logged off during the workday and let my body rest, but I’m so used to pushing through and moving forward. It’s what got me through 2013 and in my mind, I had engaged in battle. I would win this battle and fight the good fight. Multiple Sclerosis has taken so much from me, I would not let it take everything. So, instead of letting myself heal, I pushed my body beyond what it was capable of because I was being stubborn and headstrong.

I had taken everything I had taught myself about balance and thrown it away. In the end, my body shut down and took everything from me anyways because I had pushed it too far. I did not respect what my body could do in that moment. Throughout the last three weeks, I’ve had to listen to my body and in that moment, I didn’t want to listen anymore until my body gave me no choice but to listen. I was wrapped in a cocoon of water and fog and even though my physical body was still, the body within danced with the waves.

Even so, after all of that I returned to work on Thursday. When I went out for my walk in the morning, I saw my neighbour. She’s always lovely and I know that she works as a personal care worker. She asked me how I was. When I took a moment to say that I was all right, she gave me the look and asked me how I was really feeling. I took a deep breath and told her all about the flare up, what I had been going through and the curveball that life had thrown me.

When I was done, her intense look deepened. “You have to stop that,” she said. “You need to listen to your body. It’s one thing to offer the people around you the support and kindness they need in moments of like this, but why would you deny that to yourself?” Her gaze softened. “There is only one of you and you have to take care of you.”

I thanked her for her words and have been thinking of them since. They struck a chord within me. I think I was pushing my body past what it could do because I didn’t want to admit that I was weak. In reality, giving in to the need to rest would have been a sign of strength by choosing myself and giving my body the time it needed to heal. There is nothing weak with choosing me, and it took a friends kind words to see that.

I’ve been wired this way for a long time. My father used to yell at me when I couldn’t do something on the first try and kept saying that I had to give 110 percent. He didn’t take kindly when I told him there was no such thing. However, after so many years living with that mentality, that kind of attitude is hardwired within me. I’ve done a lot of work with a therapist to try and let go of the need to push myself, but some habits are hard to break.

With the flare up, I’ve gone from working out three times a week, swimming three times a week, painting and writing and working full time to having everything on a standstill until my body tells me what I can do. I’m not working out of swimming due to the vertigo and balance issues and I’m painting and writing when I have the energy and the brain power. Perhaps pushing through on Wednesday and Thursday was my own was of rebelling against the MS and the waves of the flare up.

I have to realize that part of self care and self love is paying close attention to my body and honouring it when it needs rest but doing what I love when I’m able to do so. It’s been a hard lesson for me to take on, but what I’ve learned is that with healing, it’s not one step forward and three steps back. It’s always going forward, even if I’m just resting. The act of healing is done by honouring my body and learning to listen to it as closely as possible.

More than anything, I must give my body love all the time, not just when I’ve reached the point of exhaustion. There is joy in all of this, though. I’ve learned an even more valuable lesson because of this journey that I’ve been on. I’ve found joy in the small moments and the minutes where I was able to achieve stillness. Every small action of self love that I make is a step towards reclaiming me.

It’s all part of the beautiful dance with the waves within as I take on life one step at a time.

Posted in Flare Up, Multiple Sclerosis, Symptoms | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

A Journey of Ten Years

Posted on August 21, 2023 by Jamieson Wolf

It’s hard to believe that it’s already been ten years.

I remember when I was first diagnosed. At the moment that the neurologist said those words, I thought my life was over.

“I’m so sorry, you have relapse and remitting multiple sclerosis.”

 What I didn’t know was that it was beginning all over again.

The past ten years have been full of so much living and so much life. There were a few things that I had to let go of. The first thing that I let fall away was a mentally abusive relationship. It’s been ten years since I’ve spoken to him, but I remember the first words that he said to me after the diagnosis when we were alone in my apartment.

“Well, you’re a broken man now.”

I remember believing him for a moment, feeling so muchemotion inside of me, until I realized that if he was right and I was broken, I would have to heal myself. I knew that I would have to change a lot things like the way I thought of myself and the way that I looked at myself when I was in front of the mirror. Most of all, since the moment that he had uttered those hateful word, I knew that I had to get rid of him.

When I did that, everything changed.

Over the past ten years, I’ve constantly proven to myself that I’m anything but broken. I’m man different things: I’m a writer, able to call worlds into being. I’m an artist, able to give my imagination form. I’m a tarot card reader, able to delve into my mind, body and spirit and figure out some of the mysteries of the world.

I’m a husband, a lover and a friend. I’m a son, a fur baby daddy. I am an animal lover; I have a wicked and sometimes sarcastic and sardonic sense of humour. I am constantly looking at the brighter side of life but have let go of toxic positivity. I love nature and am often called to walk outside so that I can feel the light of the sun.

I am drawn to the arcane and the shadows so that I can find the light. I have learned to acknowledge my emotions and deal with them instead of pushing them down or away from me. I love learning about history so that I can know where I came from and where I’d like to go. I don’t look at the world from the perspective of someone who thinks their life is over, but from the perspective of someone who knows that there is so much of life left to explore.

A small part of me wants to reach out to that incredibly abusive man because without those words echoing in my mind, I would not have constantly proven to myself that I’m not broken. Instead, I feel like I was cracked open so that the seed within me could find the room to grow and the light could find a way in.

It’s been an incredible ten years. I met a man that I fell in love with and he is my husband, my lover and my best friend. Together, we’ve explored so many sights that the world has had to show us. I’ve met so many people and my life is full of family, friends, love and togetherness. I am a different person than I was ten years ago. I look back at the person I was and, though I see parts of who I was, I don’t see who I am now.

What I do see is that this past ten years has been a journey of growth and becoming. I was a caterpillar, ready to do the messy work that needed to be done so that I could become the butterfly. Over the next ten years, I’m ready going to spread my wings and see where I am going to go.

I’m ready to fly.

Posted in Challenges, Milestones, Multiple Sclerosis | Tagged , , , , , , , , | Leave a comment

The Lessons I’ve Learned

Posted on May 16, 2023 by Jamieson Wolf
The little yellow magnet that started it all.

Ten years ago, my life changed not once, but twice. The first time it changed, I had no control over what happened, and it ripped over my body like a storm. The second time it changed, I was the one in control, standing in the middle of that storm against the onslaught of my body.

I was diagnosed with multiple sclerosis ten years ago in April of 2013. The weather was the same, warm and slightly sticky with humidity. My body had become something unknown to me and my life was a dumpster fire. I was unsure of where I fit in the world as it was now, no longer at home in my own body and its unfamiliar terrain. After months of now knowing what was inside my body, I finally knew and yet, I felt more lost than I did before.

I believed I was okay, that I would be all right. I would choose joy, but it ended up being some kind of cruel joke as the storm grew around me and the dark forest of my depression grew larger by the day, the trees taking shape in my waking hours and my nighttime wanderings. I was lost within myself. I came close to taking my own life, believed my boyfriend at the time when he called me broken and let my power be taken away from me.

I remember when my life changed the second time. When I picked up that little yellow magnet off of the floor and read those six small words. Never let it be said that word don’t have power. Looking at those words was a revelation: my life is up to me.

Knowing that life had to change, that I had to change some of my habits, I set about trying to honour my mind, body and spirit. I broke up with the boyfriend (for good this time) and focused on loving myself or trying to; I needed to learn to love all of myself and that included the multiple sclerosis and the cerebral palsy that made my life difficult. That’s an ongoing process, loving all of myself, but I’m getting there.

I threw myself into workshops that would better my spirit. I took workshops on manifestation, Tarot, reading all kinds of different texts about astrology and numerology. During those workshops, I realized that the world was so much bigger than I thought it had been. It wasn’t a world filled with just MS or CP, it was a world filled with mysticism and wonder, of sights waiting to be seen and knowledge waiting to be absorbed. I was a sponge. I wanted to learn everything I could and, in the process, I learned about myself.

I learned to walk again with a cane and with that hill conquered, I started walking the MS Walk and walking has become a daily part of my life. I started doing a workout three nights a week, knowing that being active was another way that I could have some control over the storm that was contained within my body. I now workout four to five nights a week and I still go for walks. It feels like with each step, I’m taking back a bit more of myself.

The work continues on my mind. I’m working on self-love and trying to work through past traumas. I talk with a therapist and try to remember not to be too hard on myself. That’s easier said than done but therapy is helping and being open with my feelings helps too. It also helps that I’m married to a man that I don’t have to hide myself from, that he sees all of me and loves the parts of me that I have difficulty loving.

What I realized during all of the work that I’ve done on myself is that I have been living my best life and that came from the MS. It forced me to look at things in a different way and to cherish the celebrations and the joy whenever they came. I know that I lived before the MS came into my life, but from the moment I woke up on new years eve day and couldn’t walk or speak, my life path had a different path, a new trajectory that I could either fight against or follow. I chose to follow it and it has led me to the most amazing parts of my life.

When I look in the mirror, I try to remember who I was before MS and it’s become so wrapped up in who I am and my memories of self that it’s hard to separate the two. Nor would I want to. MS has taught me what really matters in life, how to truly be thankful and grateful and what to be grateful for. It’s opened up my mind to a whole new sense of who I am and the possibilities that are open to me now that I’m living my best life.

Had you told me that in ten years, I would be living the life I am now, I would have laughed sardonically at you. I never would have believed I would be living the life that I am living. I’ve had to really change the way I think about life and about the path that I am taking, and I know that, for myself, positivity and a sometimes-maniacal sense of humour is such a big help.

I don’t know what the next ten years will bring, but I am thankful that ten years ago, I looked down at that little yellow magnet and made a choice for myself.

The one thing that I’ve learned in the past ten years is the simplest lesson:

My life is up to me.

Posted in Anniversary, Lessons, Multiple Sclerosis | Tagged , , , , , , , , , , , , , | Leave a comment

Boats of Many Colours

Posted on May 9, 2023 by Jamieson Wolf

I forgot again.

There has been this pressure building in my mind and I couldn’t figure out why. My emotions have been like a constantly moving sea, unknowable and almost insurmountable. I’ve been carrying around depression like a hairshirt, feeling like it’s just something that I have to live with, even if I don’t know why. I stopped questioning the turmoil within and kept on with the business of living as best as I could until last week when it hit me.

May is my dark month. Or it used to be.

I was diagnosed with multiple sclerosis in April of 2013. I would have to wait until August to find out which type of multiple sclerosis I had living inside of me. At the time, I thought I was okay. I was born with spastic cerebral palsy. I had been disabled all my life; what was a disease on top of that?

Turned out, it was a lot. There were a few other issues that I was dealing with at the time including an abusive relationship. All of this brought on a crippling depression. I lived within the dark forest and didn’t even know. The whisper of the trees kept the voices company; the voices liked to tell me that I was broken.

I remember the moment I almost took my life. That moment is always crystal clear to me. I had just been prescribed one of my first medications, a painkiller named baclofen. I was at work, and I sat outside having a cigarette. I put the cigarette out and poured the bottle of pills into my hand and picked up my bottle of water. I could not feel the breeze on my face, nor the sun on my face. There was only the forest and it wanted all of me.

I called my boyfriend at the time and told him what I wanted to do. He told me to go for it, to kill myself, to stop bitching about it and just get it done. I hung up on him and did what I should have done in the first place and called my mother. She told me that she didn’t raise a quitter and that better things were coming, I would just have to welcome them when they did and believe in the possibility of maybe.

Trauma like that stays with you. Even though my body and spirit had forgotten, my mind didn’t. It’s been trying hard to pull me back into the dark forest where I used to feel so much at home. I’ve been trying to do what I can to ignore the forest and the trees that know me so well. I think in the end, it’s easier to let the emotions run through me rather than to fight against them.

I have learned one thing from the past. I no longer try to mask the emotions with joy that doesn’t reach my eyes. I no longer try to hide behind a wall of positivity so that no one around me needs to see the fragile shell that lays inside. I’ve let go of the toxic positivity that I held on to so desperately, needing to ignore the sadness until it nearly swallowed me whole.

I have forged new paths and new memories, less replacements and more instead of’s. I have done what I needed to develop new patterns and new behaviours. I eat well, I exercise, I meditate every day. I take medication to help balance my emotions. I practice self love as much as I can, and yet, the waves of emotion are still there.

And that’s okay.

I’m glad I forgot, but instead of constantly trying to turn away from the sadness, I need to take a moment or two to sit and reflect on what the sadness is trying to teach me. When I close my eyes, I can see the waters flowing out from me. In the waters are tiny boats filled with different emotions. I can see the bright pink boats of joy, the green boats of growth and the yellow boats of transformation. I can see the red boats that represent love and the blue boats that are my sadness, almost the same colour of the water. The blue boats look as if they were painted by the storm from which they came.

I pick one gently from the water and I hesitate to look inside it. I take a deep breath and when I look down at the boat, I can see my eyes reflected on the waters surface held within.

Instead of shoving those boats aside to make room for the boats with brighter colours. I need to remember that all the boats of many colours come from me. They are all pieces of a puzzle and together they make up the canvas of me.

Even though I’ve done what I can to deal with my emotions, I can’t turn my back on them for they are the many facets of who I am and they can help me produce magic. I place the blue boat back in the water and follow it along on its journey to see what secrets of the waters it has to tell me.

Posted in Cerebral Palsy, Depression, Multiple Sclerosis, Self Harm, Suicidal Thoughts | Tagged , , , , , , , , | Leave a comment

The Light of Small Joys

Posted on April 27, 2023 by Jamieson Wolf

The thing is most of the time I feel okay.

I can pretend that there is nothing wrong, that I’m totally fine and I don’t have anything to worry about…but then my mind reminds me of the fact that I’m in isolation at the moment. My most recent bloodwork showed that my red and white blood cells had plummeted to levels they had never seen before.

I recently went through my second round of Mavenclad, a drug that is normally used to treat Lymphoma cancer. The idea being that it will eradicate my immune system and when it grows back, it will do so without the lesions that cause my MS. I never thought I would go through chemo to treat something that wasn’t cancer and that the drug may cause cancer in the end; the irony isn’t lost on me.

It’s been a bit of a roller coaster ride. I’ve had dizzy spells, hot flashes, nausea and fatigue. There have been falls, too but I don’t know whether those have anything to do with my cerebral palsy or my MS. I’ve lost sight of where one disability ends and the other begins.

 I finished my treatment a couple of months ago and I know from talking to my MS nurse that my immune system is at its lowest right now. I have to stay away from people as much as possible as I’m now prone to parasitic infections and other maladies. Since Mavenclad is a form of chemo, its side effects are very similar.

It’s odd to think that something I can’t see is determining what I can and cannot do, however going through Mavenclad treatment has taught me a few things about myself, mostly to listen to my body. This is something that I’ve had to learn how to do. It’s hard for me having a body that sometimes limits what I can or can’t do. It’s hard to be resentful when it’s the only body I have.

Sometimes, when I stop to think about it, I can visualize my immune system like a sea and the water levels are growing lower and lower. However, the lovely thing about tides is that they always find their way back. I know that it will take time for my system to regrow, and I just have to be patient.

I’m trying to approach everything with positivity. Not toxic positivity, I’m trying to outgrow that habit of pushing everything else aside until I’m only left with the sparkle. No, I’m just looking for the gift in every day, the small joys that make everything easier to deal with. I learned early on in my journey wit MS that positivity and a positive mindset are key.

Those gift can be spending time with my husband, writing a few pages of my current book that I’m working on (or this blog post), working on a new painting, a phone call with a friend, spending time with our cat Anakin who is always up for a good cuddle session or a cup of tea and a good book. The joys don’t have to be big, just big enough to shed some light into the shadows.

I’ve had friends remark that they often forget what I’m dealing with because I’m so positive most of the time. I often forget too, but the body takes the time to remind me. There always seems to be so much on my shoulders and inside my head, all these words that need to be said, emotions that need to be felt and acknowledged. There always seems to be almost too much to think on and work my way through.

I am thankful for the small joys that I have in my life and for the big joys, too. I’m not avoiding thinking of the big things, jut choosing to think about something else for a while until I can work my mind around what I really need to think about. If that means I write a lot or paint a lot, so be it. In the end, every word and canvas make up a whole world that I can explore when things get a little too dark.

The little joys are the lights in the darkness so that when it gets to be too much, I can always find my way home to myself.

Posted in Cerebral Palsy, Depression, Fear, joy, Multiple Sclerosis, Symptoms | Tagged , , , , , , , , , , , | Leave a comment

The Deity of the Waves – Thoughts on Chemo and the River Within

Posted on January 28, 2023 by Jamieson Wolf

I had three dizzy spells today.

I was sitting for one, standing for another and walking in my apartment for the third. The dizziness and nausea passed quickly and each time I was able to hold on to something to stable myself. I was doing a different thing each time, so there seems to be no rhyme or reason to it.

I know that I’ve been through this before, after all this is my second round with Mavenclad. The thing is, I don’t have any concrete memory of what it was like last year, just this vague memory of feeling unwell and sick during my first round with the chemo drug. I remember isolating during the holidays season as a precaution, but not much else. I don’t remember what symptoms I lived with during that time.

I remember each fall I’ve had though. Those falls began after I had chemo. They would start with a sudden dizziness and when I tried to get up and go back to bed, the dizziness would be followed by the loss of all motor control and a complete black out with no memory of how I ended up on the floor, just the sound of my voice calling out as I fell. All of my doctors say that Mavenclad doesn’t produce those kinds of symptoms, but I’ve never fallen like that before.

I knew that this second round would be different as my body is still dealing with the affects of last years treatment. I’ve had a variety of symptoms that differ by the day including absolutely crushing brain fog, dizziness, pain, fatigue, nausea, forgetfulness and hair loss, some of them starting on the day I took the first couple of pills. I’m a lot more wary this time around, knowing what it can do. Either way, it certainly been an adventure.

There’s one thing on my mind this time around. Even now as I sit here writing this, my immune system is shrinking and shutting down. Eventually, I will left with a little barrier, much like those pawns that protect the real players on a chess board. I like to picture the shrinking of my immune system as a tide, gentle one moment, crashing the next, followed by the calm of silence.

Four months from now, I will have to be real careful and I will have to isolate myself, at least for a couple of months while my immune system regrows itself. Then there will be an MRI to set my baseline and then another to let me know if the Mavenclad did anything, or if I will need another round of chemo next year.

I choose to think of those two months that I will be isolated as guard duty for the deity of the waves within me. I will have to protect the water within, watch the ebb and flow as it starts to grow again. When the deity regains enough of its power, I will be there to watch it flow into the dry soil that my body will become, ready to protect me, just as I have protected it.

While I wait, I just have this feeling of uncertainty within me. I don’t know what is in store this time, but I’ve chosen to sparkle and focus on the positive things in my life as well as the power of laughter. I have experience with toxic positivity and I won’t engage in that kind of behaviour again. I don’t want to use joy as a cover or a mask this time, but as something to help me heal and find light in the darkness.

I figure with every laugh, every moment that makes me smile, it will help the deity of the waves find its way back home to me once again.

Posted in Chemo, Mavenclad | Tagged , , , , , | Leave a comment

This Is My Journey

Posted on December 3, 2022 by Jamieson Wolf

I’ve had a lot of different health issues lately.

To begin with, I saw my chiropractor a few days ago. It was an assessment appointment to see how far I’ve come in my healing. I broke one of the vertebrae in my spine when I fell one night a few weeks ago. You can read about that in THIS post.

While he’s happy with the progress I’ve been able to do, he asked me to take another two weeks off work, subject to revaluation. I’m still experience a lot of pain; it’s difficult for me to make it a full night in bed and the pain will flare up if I try to do too much (which I always seem to do).

Resting is hard for me, as I equate my creative output and my productivity as my worth and my value as a person. I’m trying to break this habit, but it’s hard. I am for sure going to be talking to my therapist about this.  I know that this stems from my father and the lessons that he taught me. Go figure that the unhealthy ones would stick.

However, in the past almost five weeks, I’ve learned some things. I have learned about the value of daily naps, almost daily baths, the joy of sitting with a good book or a fun game on my Nintendo Switch. I’ve incorporated these practices into my daily routine to try and find some balance and some clarity while I try to ignore the internal critic.

The internal critic tells me that I’m being lazy, that other will think less of me if I don’t push through, that I should be doing all the things (!!!). Thankfully, I’m getting a little better and telling him to go away, it’s hard though. I need to allow myself the care and the time that I would give to anyone else. It’s always more difficult when it comes to me though. I know that I’m not the only one wired this way.

Added to the issue with my back, got an email for testing last week. It was at the same place I went to have X-Rays for my back, so I figured that it was a follow up X-Ray for my chiropractor and that maybe he just forgot to say something about booking the appointment. When I was called in to the exam room, I was surprised to be taken in for an ultrasound.

According to the technician (who had the bedside manner of Sweeny Todd), my family doctor ordered the test as she wanted to look at my bladder, prostate and kidneys. The technician berated me for eating anything as I was supposed to have fasted.

The thing is my family doctor didn’t say anything to me about wanting to look at my bladder, kidneys and prostate. The last time I saw her was a few months ago to deal with my high blood pressure and about needing antidepressants. I have no idea why she ordered the ultrasound or what she could be looking for. I’ve put the worry in the back of my head for now and there’s been no follow-up from my doctor at all. Hopefully she would have the test results by now and will (hopefully) call for an appointment.

Because things come in threes, I’ve also been waiting for the results of bloodwork that I had done on Friday. I am waiting for my red blood cell count to get from 0.07 to 0.08 so that I can start my next round of Mavenclad chemo medication. Knowing that the hospital would have gotten the results by now, I sent them an email asking if I had the green light for Mavenclad. my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.

 I had my bloodwork done last week and had to email the MS clinic to find out if my Mavenclad was going to start soon or if I had to schedule another appointment for more bloodwork to be done. I know that hospitals are overrun and overworked, but to my way of thinking, I should not have had to email them myself. Once again, I have to be my own health advocate. The MS clinic once renewed my faith in medical science. Now it’s one of the examples of our overworked health system. I heard back from the infusion clinic this morning (not my MS clinic nurse or neurologist) and my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.

I should have received a call from my nurse at the MS clinic and I should have had an MRI done between rounds one and two of the Mavenclad, but that didn’t happen. I saw my neurologist month’s ago with no update on what’s going on. I even heard from the company handling the Mavenclad and they gave me a list of questions to send to my MS nurse when I got the first round bloodwork done…with no response at the time except to tell me that the MS clinic was closed for two weeks and there’s been no contact since.

I’m annoyed and feel really let down. Is this the state of our medical system?

I should have had an appointment or a phone call with my family doctor before she ordered tests to be done. I should have received an MRI appointment to prove that the first round of Mavenclad actually worked or made a difference. I should have been told about everything the Mavenclad would do to my body; to me, knowledge is power and forewarned is forearmed. I actually want to know all the ins and outs, no matter how boring. It is my body after all. I really wish that I would have been told everything. It would not have changed my path, I would still have taken Mavenclad, but I would know more about what to expect.

I know that doctors are under an incredible amount of strain right now. I get that. Covid made the holes in our medical system very evident, and I know that a lot of stuff is bound to fall through the cracks. However, with both my family doctor and my neurologist, I was not given information I should have been told. All I can do going forward is to be my own health advocate and remember to ask more questions and not take what I’m being told at face value. I’ve sent an email to my MS nurse and requested an appointment with my family doctor. We’ll see what information I’m given or not given.

I need to remember that this is my journey and I decide what direction I go in.

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Pushing Through

Posted on October 28, 2022 by Jamieson Wolf

I have difficulty sitting still.

I’ve always been this way. I fill up my time with different projects and things to keep my mind and body busy. I’m always writing a new book, a new short story or a poem or perhaps I’m working on a painting. I am always working on some kind of creative endeavour. I also work out in some way six days a week and on top of all of that, I work full time.

I do all of this despite the fact that I was born with spastic cerebral palsy and I also live with relapse and remitting multiple sclerosis. I’m used to pushing through the pain, trying to force my way around it so that I can accomplish the tasks that lay before me or the ones that I’ve set for myself.

I’ve been trying to think why I do this to myself, ignoring the pain as much as possible so that I can forge ahead instead of letting my body heal the way that it needs to. I think I’m just hardwired to try and outrun my disabilities as much as possible. If I accomplish all of these tasks, all the writing, painting all while exercising and working full time, somehow this will mean that I’m able to live beyond my disabilities and that they can’t hold me back.

I’ve always done this to myself. When I was first struck with multiple sclerosis, I went back to work after two weeks, even though I could barely do anything. I was so determined to prove that the MS wouldn’t hold me back that I pushed through all of the pain and the difficulties that I was experiencing. I had to prove to myself that I was stronger than the MS. Retrospect is 20/20 and I know that I did myself a lot of harm by ignoring my body.

It’s a habit that continues almost nine years later. I’ve always had a lot of difficulty listening to my body and watching the signs that my body gives me and sometimes choosing to ignore everything out of sheer stubbornness.

Recently, I got Covid. My husband and I had been so careful to stay safe, but the new variant is tricky and we got Covid. It was like a really bad cold, but there are other things at play for me. I started my first round of Mavenclad last year and my second one is coming up soon. It’s been causing me to black out and fall. This happened three times before my family doctor figured out that it could be caused by my blood pressure. I thought everything was under control, but I didn’t account for Covid symptoms.

My immune system is already lower because of the Mavenclad and I already have vertigo and balance issues from the MS. Add the dizziness caused by Covid to the mix and it’s no surprise that something happened.

I started having night sweats, so I got up out of bed to take off my t-shirt and open the window. Taking off my t-shirt was as far as I got. I remember turning towards the bedroom window when everything went black. I fell hard right on my tailbone and could feel pain radiate throughout my body. I knew something was wrong but didn’t know what. My husband found me on the floor and helped me back to bed where I lay in agony. I took a couple of days off of work to deal with the end of covid and my new injury.

Instead of relaxing, I wanted to prove that I could live beyond my injuries, that I could still be productive in some way. I chose to engage in some baking therapy, thinking that it wouldn’t take too much to bake a loaf of cinnamon swirl banana bread. Well, my body had other ideas. The pain was so bad that I could only do one thing and then sit down. Mash the bananas, sit down, mix in the wet ingredients, sit down, mix in the dry ingredients, sit down. On and one this went until I was able to put the pan in the oven. It took me two hours to do this. Thankfully, the banana bread turned out wonderfully, but I was in a terrible amount of pain.

I finally booked an appointment with a chiropractor. The pain was not going away and even though I was taking Robaxocet and ibuprofen, the pain would only lesson, not disappear. The chiropractor sent me to get X rays which I did earlier this week and I met with him the other day. I have a compression fracture in one of the vertebrae of my spine. There would be pain for four to six weeks but with his help, I should get back to 80 to 100%. He put me off work and told me that the only way to help myself heal was with rest. He gave me four weeks off work.

The fact that I made banana bread with a broken back is not lost on me. I was so desperate to prove that I could still be active and productive that I tried to push through the pain as I always had before, except now it wasn’t working.

I know that part of the reason that I stay so active is that I am trying to prove to myself and to everyone else around me that I am living beyond my disabilities. Also, why does all the rest time in order to heal frighten me? There is nothing wrong with resting and even if I’m just reading a book, I’m still being active.

I have to let go of the need to be productive to the point of hurting myself. I need to stop trying to push through the pain in order to prove something to myself and to those around me. Rest should not be just for healing but should be part of my daily life. I don’t need to write, paint or create all the time. My worth is not determined by my creative output and I need to remember that. Even if I am not writing or painting, it doesn’t mean that I’m not a writer or a painter.

I’ve been trying to think of where this need to be so productive came from. I know that before I was diagnosed with multiple sclerosis, I was doing the same thing, always writing and painting and working full time. I think it goes deeper than that now. I think that since my diagnosis, I’ve been trying to outrun it in some way in case I’m ever bedridden again. In living with a disability and a disease, I’ve convinced myself that I’m able to go past the pain, that pushing through it is the only way when I should be comfortable with resting and treating my body like the temple that it is.

Even now, in writing this post, I had to figure out how I could write without causing myself. I’m unable to sit at my office chair so I’m currently writing this on my laptop while leaning back on the couch so that my back is against a heating pad. Resting is difficult for me. My mind keeps telling me that every moment I’m not creating something is a moment wasted.

What I need to learn over the next few weeks is that resting is not a punishment, that giving my body the rest that it needs will allow me to heal all the more quickly.

Going forward, I need to honour my body and listen to it more clearly. Listening to my body isn’t a bad thing. I need to stop seeing any lack of productivity as a lack of my worth. Rest is not a punishment, it’s a reward. I need to stop pushing through but honour my body’s limits and boundaries and treat it like the temple that it is.

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Happy Birthday Max Shadow!

Posted on August 21, 2022 by Jamieson Wolf

I was diagnosed with Relapse and Remitting Multiple Sclerosis nine years ago today. I thought about what I wanted to write to honour today and the following letter to my multiple sclerosis is what came out. I hope you enjoy it.

Dear Max Shadow,

It’s hard to believe that you are nine years old today.

I still remember the first time that I met you. The moment of your birth came a day before my birthday. I didn’t have any presents to give you, but I knew that something was arriving that day. I just had no idea of what would be happening to me that day.

Except that’s not true, is it? I knew what was coming, but hearing it said out loud, having the doctor name you, well no one can prepare for that. I told myself that I was okay, and I was and wasn’t at the same time. The doctor was very gentle as he handed you to me. I looked down at the clipboard showing the test results and knew only a subtle kind of peace.

You had me convinced that I was crazy, that the lack of control over my body could be all kinds of things and when the doctor named you, I knew blessed relief. I was not crazy; I was not losing my mind. What was wrong with me had a medical name, even though what you did to my body could change in an instant, depending on your mood.

Quite often, you tried to speak through me, twisting my mouth so that I had difficulty speaking. Sometimes, if you felt like it and you often did, you would increase the pain levels within my body so that everything felt as if it were on fire. You would take away my sight so that everything was blurry or out of focus and no matter how many times I rubbed my eyes, the blindness would stay until you let it fade until everything became clear again.

For months, I lost myself in the forest, unable to see past what was happening to my body and what you were doing to it. When the doctor named you, I cried, but there was joy within them, the salt contained in my tears cleansing me as they flowed through my body and fell from my eyes. The salt burned away a large part of the forest, the salt in my tears chasing away the dark shadows that had surrounded me for so long.

You never intended to help me, you were only interested in taking from me, like all the bullies that I have known throughout my life. So, I did the only thing I could think of doing: I chose to stand up to you. I chose to fight against what you were trying to do to my body. You had taken away most of my control, but I did whatever I could to control what I could. You took my memories from me, so I made new ones. You were unkind to me, so I showed the world kindness. You took my balance away, so I found a new way to work with my body. You made people look at me with pity, so I learned to love myself. You took away the direction I was going in life, so I chose a new one. You had filled my world with sadness, so I chose to look at the world with joy.

I also gave you a name of my own. The doctor had called you Multiple Sclerosis, but I chose a different name for you since I knew you so well, so intimately. I chose to call you Max Shadow. You liked to hide within me and rarely came into the light, letting me do all the work. I believe in a lesson I learned from one of my favourite book: fear of a name only increases the fear itself. With a name given to you, I no longer feared you.

I know that I’m a better person now than I was nine years ago. You taught me how to be truly grateful for everything I have in life and how to be thankful for every moment, every simple gift and small joy that came my way. My life may have taken a direction I could never have foreseen when I met you, but I am so thankful and grateful for you, Max. I am thankful for you because I have the life that I do now and I’m grateful because had I never met you, I have no idea where I would have ended up.

I’m not going to say that everything happens for a reason. I really hate that phrase. There is no reason for the suffering that I went through because of you. However, without you I would not have grown into the person that I am now. Without you Max, I would not have learned to overcome or to thrive instead of just survive.

For your birthday, I am giving you my thanks because of what you have taught me. I hope that is enough. For myself, I turned this day into a celebration so that I can remember what you took from me and how I have thrived because of you.

Jamieson

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Bodily Able – A Reflection

Posted on June 16, 2022 by Jamieson Wolf

I don’t often feel as if I live in an able-bodied world.

I know that we do. There isn’t much that is made with people who are disabled in mind. Those who aren’t disabled don’t have to think about anything, and why should they? They have enough to worry about.

I was out and about today as I was doing an all-day event. One of the first activities was a scavenger hunt. I was hesitant about being around so many people, but we were outside, and I kept my mask on most of the time, so I wasn’t worried. I was looking forward to a day of fun and simple pleasures, seeing people that I hadn’t seen in over two years.

From the moment we set off to follow our clues around Ottawa’s downtown core, I fell behind. Everyone else on my team walked faster than I did, and they rarely looked back to see where I was. I had to walk quickly to catch up to them. When I walked fast enough, I was able to walk with my team. I was frustrated but didn’t have enough time to reflect on how that made me feel.

At one point during the scavenger hunt, my group made their way down a huge, curved hill. Knowing myself and my body as I do, I knew that if I had attempted it, I would have fallen as I have no balance when it comes to anything slanted. I need something to hold to like a railing to be able to keep my balance.

“Is everyone okay to go down this hill?” Someone in my group asked. It was a hard pass from me and someone else who was wearing wedge sandals. We took the stairs down. I can’t do down very well with stairs either and tend to lose my footing. There was no railing, but there was a pointy fence that I could hang onto, thank goodness. It was safer to worry about losing my balance on the stairs than it was to tackle the hill.

We finished the scavenger hunt and ended up down in the market where we were set free to go for lunch. After we all met up at Majors Hill Park with our food. That was fun as I was able to talk with people I hadn’t seen in a long time, so there was some joy in the day.

I was worried for two reasons: the ground is uneven, making it difficult for me to walk if I’m not taking my time. Even when I did, there were a few instances where I lost my balance and had to right myself.

That, and there are no washrooms around.

Before the multiple sclerosis made itself known, I had a pretty small bladder. Now, with the MS, I have a near constant need to urinate. With no washroom in sight, I had to miss an afternoon activity so that I could go and find a washroom.

While I walked away from the group to find a washroom, I could reflect on what I was feeling. I was frustrated and for a moment, I thought that I was weak because I could be undone by such simple things. Then I held on to that thought. I know in my heart of hearts that I’m not weak, not by any stretch of the imagination. I know that. I often struggle against what I see as the limitations of my body. For a time, I used the term differently abled instead of disabled, but that implies that I am different from other people. I am different from anyone else, being a unique individual, but over time the term differently abled seemed to separate myself from others.

However, in those small moments, I always take a moment to picture myself on an island. I stand on this small mound of stand in the ocean and wonder what I want to fill my island with. I could be angry, I could lose my temper, but then what would that solve? I was the only disabled person amongst the group that I knew of and there’s no reason that the other people there or the organizers should take my disabilities into account.

I often struggle with simple things, so this time was no different. There have been a few outings that I’ve been on when I’ve had issues, but I try to always move forward and if I can’t, I find a way around what I can’t do. I always overcome the obstacles that are in front of me. There are times I wish that I didn’t have to deal with any obstacles, but I think dealing with them and overcoming them have taught me a lot about myself and what I am capable of.

These may seem like small mountains to climb, the scavenger hunt, a bumpy field and the lack of a washroom, and they were, but the thing about it is that those mountains shouldn’t have been there in the first place. If the world was a kinder place, everyone’s needs would have been thought of while the outing was being planned. However, we come back to the same thing. I’m open about my disabilities, but often I feel as if I’m not heard.

Like I said before, I’m not angry, people have enough going on in their lives what with the pandemic, the war and everything else going on in the world. They don’t need to hear me complain, but I should educate when I have the chance. I should use my voice to speak about the issues I face to talk about them and be an advocate for change.

I no longer think of myself as differently abled. I will use the term disabled but I will never use the word crippled; that’s always seemed like a derogatory term to me and no matter how many times I see it, a part of my cringes inside.

While I won’t use either term, I prefer to think of myself as bodily able. I’m not necessarily able bodied while I’m living with cerebral paly and multiple sclerosis however, I am not helpless either. My body is able most of the time and when there are those times I find myself having to take on a mountain, I will do so, even if it’s to find a way around it and change my path.

I know that the able-bodied people of the world don’t often think of those with disabilities or the needs that they face, but we need to change that. I should have had my needs considered today, no matter how small they are. I should not have been made to feel like I was on an island, surrounded by all those misfit toys.

One thing I have learned about making my disabled way through an able-bodied world is that I have the unique gift of being able to see different parts of the world that are often overlooked. What I see from down here is that even though there are shadows, we live in a world full of fighters and warriors of which I am one of them.

I don’t often feel as if I live in an able-bodied world, but when I do, I just need to remind myself that I and my body are able; we just have to find our own way to do things and use my voice so that I can be heard from within the shadows. All I need to do is use my voice and shine. I did so today when I checked my phone after I got home. I walked over seven kilometres and 10,000 steps today.

Sometimes, you have to celebrate the small wins and I always celebrate when I didn’t let a mountain block my path.

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