Heavy Metal Days and the Strength Card

two-steps-at-a-time-coverI am in pain of some sort twenty-four hours a day, seven days a week. I never get a vacation or a day off, I never get to go on a holiday from the pain. It is my constant companion that lives beneath my skin.

For the past two days, I’ve been experiencing spasms that started in my right shoulder. Today, they moved laterally to encompass both shoulders and then they felt like taking a longer sojourn down my right side. My arms hurt, my legs hurt, my back hurts, my neck hurts, everything hurts. My shoulders are holding the brunt of the pain and its like a fire is running along my back.

But I don’t let any of that stop me. Yesterday, I went to work, went for two walks and did my workout and meditation. Today, I went for two walks during my work breaks and I will more than likely go for a swim and do my meditation. I have a life to live, after all.

I am a Tarot reader and one of the cards I draw a lot is the Strength card. I love its message of internal strength, of compassion for myself as well as others. I love what it symbolizes, that true strength comes from within. I had a friend tell me that I had to figure out what my fascination was with the Strength card, why I felt such a pull to it.

In the end, it’s because I am strong. How else could I get through every day? How else could I take everything day by day if I was not strong, if I did not carry a reserve of strength within me to do what needed to be done? People often tell me that I am very brave to live the way I do, to not let my disability and disease stand in the way of living.

I don’t know about bravery, but I will admit to being strong. It’s the only way I know how to be.

I have days where I can look past the pain, where it’s at a lower volume. It’s as if Max Shadow and Cedric Paulson (the MS and CP I live with) are playing music and every flash of pain is a note playing inside my body. Some days they are playing top 40 hits, songs with lots of beats and a good rhythm. Sometimes, they are playing torch songs, ballads filled with infinite sadness. Other days, they are playing rock and roll, heavy on the bass and percussion. Some days they are playing heavy metal (their music tastes are very eclectic). Those days are the worst.

They are the days when I am fighting fatigue, brain fog and a host of other symptoms because I am so focused on living past the pain.

Today is one of heavy metal days. But here I am, sitting down to write this. It is always my hope that, in writing about what I carry inside of me, I will make sense of it. I will make peace with the pain for it is the way it has always been.

I always remind myself that I have a choice: I can lay down and quit, or I can work past the pain and keep on rocking.

I always choose to keep on rocking, wouldn’t you?

Posted in Brain Fog, discomfort, Fatique, Spasms | Leave a comment

The Positivity of Time

Two steps at a Time coverI measure my life in terms of positivity.

That might seem odd to some, but it’s just how I roll. I’m in pain all the time, but you wouldn’t know it. Either my legs are spasming or my back is quaking or my shoulders are shaking, but I don’t let it bother me. What’s a little (or a lot) of pain when there is a life to be lived?

I was reminded of how far I’ve come this afternoon. In 2014, I moved to a new apartment. I remember going to get groceries and attempting to carry them back to my new home. The walk, BMS (Before Multiple Sclerosis) would have taken me ten minutes or so as the grocery store was just down the street from my place.

Instead, AMS (After Multiple Sclerosis) the whole trip took me about forty-five minutes. It was agony and I had to keep putting the bags down as my arms couldn’t handle the weight. My body was shot afterwards and all I could do was rest for the evening. My body, mind and spirit were done.

I was reminded of that trip today. We are moving offices at work, so I had to bring all my personal effects home. I had four large bags to take home and they were heavy. I wasn’t sure how I would do trying to take them home on the bus, but I would give it the old college try.

I managed to get them from the office to the bus stop. Thankfully, a lovely woman helped me get the bags on to the bus. I was worried about the walk to home after I got off the bus, though. That would be the real challenge. The distance from my bus stop to my home was about the same length as it was between the grocery store and my apartment three years ago.

Getting off the bus, I felt the weight of the bags but knew, somehow, that I could do this. I had three people offer to help me on the way; I guess they could see me struggling a little bit. I thanked each of them because I knew, without a doubt, that I could do this. I made it all the way home on my own. My arms are the tiniest bit shaky, but compared to three years ago where I was done for the rest of the day, today I sit here writing this.

For me, that is quite the accomplishment. It’s a cause for celebration because it’s proof of how far I’ve come. I remember how despondent I was three years ago carrying my groceries home. When I compare that to how I feel right now? No comparison.

So tonight, I am going to be thankful that I am on the right path to health and I’m going to celebrate. Life is meant to be lived.

And I’m going to keep on living.

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Falling Through the Air

Two steps at a Time coverMy left leg has been spasming for five days.

It’s always in the same place, the thigh. The spams aren’t painful, but strong. They last for a few seconds, the longest has been close to thirty. Normally, my spasms come on quick and then they’re gone, fleeting and forgotten.

It’s been five days now, which is new for me. I don’t know if it’s the Multiple Sclerosis or the Cerebral Palsy as they both share spasms as part of their symptoms but as the MS is more prominent on the left side, I’m going to assume it’s the MS.

The spasms are usually a warning sign that something is coming, that I have to be ready. This afternoon, while I was walking with a co-worker, that something came in a big way.

We were walking and talking about books we love when my left leg gave out on me. I tried to right it and it caught on the sidewalk and then I was falling. It felt as if I was swimming through the air, everything seemed to move so slowly, as if the air had become water. At the same time, though, it felt like everything was happening too fast.

I had both arms outstretched, knowing that the best thing I could do was to just fall and not fight it. I saw a bike rack in front of me full of bikes and I hoped that I wouldn’t fall into that, that I would be spared that kind of pain.

Thankfully, my body finally did fall. It’s like it folded in upon itself. I landed hard on my left knee and ended up on my back staring at the sky. I saw a cloud that looked like a face looking down at me. Then there was the sound of footsteps. A man held his hand out on my left side and my co-worker held out her hand on the right.

I put both my corresponding hands in theirs and they pulled me upright. The man had kindness in his eyes rather than derision. He was still holding my hand as if he was afraid to let me go in case I fell again.

“Are you okay?” He asked.

“Yes, I’m fine.” That’s my normal response, even when I’m in pain, but it surprised me that I actually meant it. I wasn’t trying to brush him off.

“Are you sure your okay?” He asked again.

“Yes I’m okay. Thank you very much, though. You’re very kind.”

He smiled and then slipped away into the crowd of people walking away. My co-worker stood close to me. “You’re sure you’re all right? I saw you falling but wasn’t fast enough to stop you. I would have reached out and grabbed your hand.”

“I’m fine.” It surprised me how much I meant it.

As we returned to work, I reflected on what had happened. Normally, I would have walked away from anyone that had shown concern. I would have felt compelled to offer an explanation about the CP and the MS, some reason about why I fell. I would have been embarrassed and would have beat myself up for the rest of the afternoon and evening over something I have no control over.

Instead, this afternoon marks a turning point for me.

I accepted that kindness and didn’t jump to the conclusion that people were looking down at me. I let myself fall because it’s what the body needed to do instead of fighting it. And when I said I was okay, I wasn’t lying. I was actually okay; I was all right. I got back up and kept walking and did it with a smile on my face.

Sure, I’ll hurt later. But tomorrow is another day.

Posted in Balance, Falling, Spasms, Symptoms, Walking | Leave a comment

What I Have Learned

Two steps at a Time coverThree years ago, I embarked upon a journey.  I had no idea where it would take me or what it would do to me. Nor would I know who I would become.

Three years ago, I started my Copaxone treatment. This is a daily injection that I take to halt the MS. At first, the very thought of injecting myself was rather frightening. This might sound odd as I have three tattoos. But that’s body art. This was injecting myself on a daily basis.

However, the injections were the start of something miraculous. I started eating better and changed my diet. I cut out pop with aspartame, quit smoking and started having more salads on a voluntary basis. My diet would change once more, becoming increasingly healthy.

I did my first MS Walk and started a workout regime shortly afterwards. Throughout the almost three years, my balance and the overall strength of my body has increased. I still do my workout three times a week and have been increasing the number of repetitions.

This journey also led me to looking after my Spirit and mind as well as my body. Injections, medication and diet are only part of the battle. I embraced Tarot cards, Manifestation, Reiki and essential oils. I started working on letting go of past hurts and grudges, things that I had held on to for far too long.

It took three years but I honestly don’t recognize who I used to be. I still don’t know who I will be, but that’s part of the fun. I have learned many things along the way:

* I am stronger than I think I am: I may have Multiple Sclerosis and Cerebral Palsy, but that doesn’t mean I am not strong. Strength comes not just from the physical but also the mental and spiritual.

* I can do anything I put my mind to: Sure, it may take me longer than someone else, but it will still get done, my way.

* If I fall, get up: In the beginning of my thus far three year journey, I fell all the time, covering my body in countless bruises and bumps. While I did consider just laying down and giving up, I did eventually get up. A fall doesn’t mean you’re done; it just means you have to get up and keep going.

* Kindness is always better: While it would be understandable to be angry about all of this, even three years later, I chose the path of kindness. I am kinds to others and am working very hard on being kinder to myself.

* Breathe: Tomorrow is another day. If I have a bad day, I know that a good day will be coming.

I have no idea who I will become. That’s for time and for fate to decide. In the meantime, I’m going to live the best possible life I can and be the best me I can be. Sure, there will be bad days, but that’s what coffee and the occasional piece of chocolate were made for.

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Zombie Hordes

Two steps at a Time coverAs I got off the bus and started towards home, a group of high school boys got off the bus and started walking behind me. I could hear their conversation and all of a sudden, it became quiet, almost stilled.

Then I heard the sound of laughter. “Hey man, look at this.” I heard one of them say. “Look at how he walks.”

I heard them shuffling behind me but didn’t stop to turn around. I didn’t stop walking, I just kept moving forward. Another one said “Come on guys, come on!”

The group of them crossed the street and started walking to match my pace. Only they were exaggerating my movements. One of them was walking dragging his feet, another was walking with both feet pointed inward taking huge, big steps.

It amazed me that, in trying to humiliate me, it just showed how cruel they were. I stopped, watching them. The zombie horde stopped, too.

I never know what to say in situations like this. I have a lot of bravado and bravery inside of me, but it always seems to leave me when I’m confronted with people making a comment about, or in this case mocking, my disability and disease.

Normally, the words just flow off of my tongue or out of my fingers, but in that situation, I never know what to say. It’s like my words shrivel up and I can feel them drying out on my tongue. One of the people I know has suggested I carry card with me with info about Multiple Sclerosis and Cerebral Palsy, but even if I had those done, I wouldn’t be able to hand them out to a group of teenage boys.

I did the only thing I could think of: I took a bow. It involved no words but let them know that I had seen them, each and every one of them. They had the good grace to look somewhat sheepish. I didn’t think it was worth it to say anything to those that wouldn’t listen.

All I can do is repay unkindness with kindness. All I can do is brush away the malice and welcome in the light. Tomorrow is another day and for that, I am thankful.

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730 Days and Counting – Milestones and Simple Victories

Two steps at a Time coverI’ve been lucky enough to have a couple of milestones in the last week.

On Friday, it was my two year anniversary of taking my Copaxone medication. I will admit that, at first, the thought of injecting myself every day with a needle didn’t appeal to me.

I remember my first appointment with the home visit nurse. She was very comforting and there was even something that I could practice on before giving myself my first injection. I still didn’t want to inject myself but knew it would have to be done.

So that I wouldn’t forget, I made my needle part of my morning coffee routine. I would pour myself a coffee, take a sip for strength and then go and take my shot. Over time, it became less of a hindrance. It just became part of my every day life.

When I first received my Copaxone medications, I also received a box of literature and a journal so that I could keep a daily record of my injections. Multiple Sclerosis plays havoc with the memory, so the journal is a blessing.

On Friday, I reached the last day in my current journal. They have enough days in it for 365 days. This was the second journal that I had completed, meaning that I had been taking my Copaxone treatment for two years.

I wrote my Copaxone nurse and asked for a new journal, thinking nothing of it. She wrote me back with this lovely note:

Wow, you started your Copaxone treatment 2 years ago, congratulation on your milestone. Be proud of yourself, for being committed to your wellbeing and keeping the MS stable.

That note made me sit back and take notice.

Having Multiple Sclerosis and Cerebral Palsy is a daily battle. On one hand, the CP causes me to be in pain every day to some regard. Since I have started taking Baclofin, the spasms have lessened, but they are still there. I sometimes wonder what it would be like to be pain free and I can’t imagine what that would be like; I know no other life but this one.

The MS comes with its own symptoms: brain fog, fatigue, memory loss, speech and sight problems. The MS also causes spams, so I’m never sure anymore whether it’s the MS or CP causing them.

So, every day when I drag myself out of bed, I go through my rituals as if I am preparing for battle. It is a battle, every damn day. However, I’ve been so busy battling life that I sometimes forgot to celebrate the milestones and simple victories.

I’ve quit smoking, changed my diet completely and have taken on an exercise routine. I have embraced Reiki and meditation. I walk four times a day, every day. I’ve participated twice in the MS Walk, first walking 3 KM and then 5KM.

But I forget that even something small can be a victory too. The first time I was able to take the trash out again, the first time I walked to work again. I have to remember those small victories that have marked my path from then to now so I can appreciate the milestones.

I had another milestone yesterday.

I had my appointment with my neurologist. He was very impressed with how far I’ve come and said that I’m even stronger than I was six months ago. With no new lesions seen in my last MRI and how well I’m dong, I’m now on annual appointments. I will no longer have an MRI and follow up appointment every six months.

Instead, I will only have an MRI and follow up once a year. That is just amazing to me and is the result of everything I’ve done to get from there to here, my small victories and milestones marking each step along my path.

I need to remember that, though I may be in a battle mode all the time, I have to stop and observe those milestones and celebrate the small victories. For life can’t be only had in battle.

Life is for living and I can’t ignore what makes life so awesome, can I?

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Happy 2nd Birthday Max Shadow

Two steps at a Time coverI almost forgot that tomorrow, August 21st, is Max’s Birthday.

Two years ago tomorrow, I was diagnosed with Multiple Sclerosis. I had to learn to walk again, to speak again, to see again. My entire self was wiped away and I had to lean who I was with this new person inside of me.

It’s been one hell of a year. More than focus on where I came from (I’ve already written about that), I want to take a look this year at where I’m going.

I’ve learned even more about myself this year. I leaned that perfection is an unrealistic goal, no matter how much I strive towards it. Instead of hoping to achieve perfection, I’ve been focusing on just living as much as I can.

I’ve learned that it’s okay to ask for help. I have a difficult time asking others for any kind of assistance; call it being stubborn, too proud, whatever. The fact remains that I don’t normally like asking for it and prefer to do everything myself.

However, asking for help doesn’t mean that I’m weak. Instead, it means I’m strong enough to ask for help when I recognize that I need it. It’s not a swallowing of pride; more, it’s knowing that there are those who want to help support me and I have to let them.

I’ve learned about the healing properties of joy and laughter. Too often before, I was stuck in the darkness not able to pull myself out. Now, every time I’m feeling the darkness pull me in, I smile. The smile may be forced at the beginning, but eventually it reminds me that I have a lot to smile about and the joy follows close behind that smile.

I’ve learned how lucky I really am. Every time I see or hear of someone worse off than me, I think: ‘that could have been me’. I realize how lucky I am to be living the life that I have and take stock of my situation. I know that each person’s experience with MS or CP is different and I have my own life to live.

More than anything, I’ve stopped hating the MS. I talk about self-love a lot and often say that I love all of myself. That wasn’t true. I would say I loved all of myself but internally, I would utter: except the MS. I hate Max Shadow.

I’ve had to learn that it’s just part of me, of who I am. It doesn’t define who I am, much like the fact that I have CP or that I’m gay. Those are just parts and pieces of who I am, but they do not define me or the direction my life is going in.

How can I love all of myself and not love the MS? It’s done a lot of great things for me: The MS has made me realise what really matters in life. It’s shown me what true thankfulness means. It’s forced me to live better, eat better and to take care of myself.

Out of everything I’ve learned this year, I’ve learned to love. I love all of myself. Sure, the MS may make things difficult from time to time, but there is much to love about what I’ve struggled to become.

Max, I want to thank you. Thank you for forcing me to live the life I never knew I wanted. Sometimes, you’re a bit of an asshole, but then again, isn’t everyone? So this year on your birthday, I want to give you my thanks and give you a hug.

Let’s have fun this coming year and keep on trucking, okay?

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