Finding my Sunshine

Evan has been urging me to write since April, especially about the surgery and unexpected results. You have all been so supportive this past year during chronic spasms that left me housebound and eventually bedridden. You are what kept my spirits up. Then, I took all that love, rolled into the Operating Room with me… and disappeared.

Four days after my surgery, after spending a lovely hour in the garden, Evan and I started in on our bedtime routine, marveling at how normal it all felt. For one beautiful spring day, we had our lives back.

Then, my arms tensed and shook. Our eyes met. This could not be happening. Could. Not.

The spasms have been back for 3 months. To combat them, we have been using oral baclofen. You know, the sedating medicine that keeps me in bed 24 / 7, robbing me of precious time writing and being with Evan? That’s been particularly tough on me. We have also repeatedly experimented with increasing the dose of baclofen the pump pushes into my spinal cord. I will have another bump in a few days. I truly believe this will be the final increase. I have to because, as Eleanor Roosevelt said, “When you reach the end of your rope, tie a knot and hang on!”

Where am I now?

I just had a great clinic. My leg spasms are gone – arm spasms are more stubborn – so I can breathe easier. As a result, I just got my highest breathing scores in a year! They went up 27%! Confetti! I need to have my chair basically restructured as a result of increasing disabilities. I need a new back with guards on the edges so I stop slumping left, arm trays to keep my arms from sliding off, lower or deeper slanting foot plates so my pointy feet can rest safely and comfortably, and a controller on the back so Evan and other caregivers can drive me. That’s a lot, I know, but I am certain these modifications will double my chair time and improve my comfort and safety.

Once this is done, I will feel comfortable getting out of bed more and doing outings, maybe to the art museum! I don’t know how long it will take to reform my chair, but I have patience and enthusiasm!

What have I done with my experience?

“You don’t have to be totally comfortable all the time.” This has been my mantra for a while now. Unless something is becoming painful or interfering with what I am doing, I don’t have to give it attention. Is everyone really walking around 100% comfortable all of the time? Of course not, but it doesn’t hold people back. Pre-ALS, the most uncomfortable I have ever been was dancing ballet. My toes were bloody and mangled to the point where I couldn’t have the the weight of a blanket on my feet at night. I actually used my Beatrix Potter baby quilt. Aww!

The discomfort of wearing shoes during the day didn’t stop me from going to school, work, or out with friends.

I have decided to treat fatigue the same way I treat discomfort. Teaching left me exhausted, but I didn’t let that be a reason to stay in bed. I have to face the fact that I will probably never be energetic as I was. The fatigue is a weight on me, but it is a weight I can function with.

Finding my sunshine and how you can find yours!

In a recent conversation with Melissa about the frustration of life after surgery, she said, “Maybe this is more of the disease’s ups and downs.” I realized I had been waiting for the full days that would be ups, but depending how the baclofen pump experimentation goes, it could be a long time before I experience that. I also realized that I am having ups right now, though they’re only for a few hours. They still count. In those hours, I can have family and friends visit, take a trip to the dog park, maybe even head downtown. I just have to balance my “sunny ups” with listening to my body. I am learning that I need a day to recover from the visitors and outings, but that doesn’t diminish the joy that I find those active days. It just means that I have to be resilient and creative on my down days. I may find passive joy those days by bing watching a show I love or listening to a funny podcast. The ups and downs are about not letting the hours I sleep from sedating medicines rule my schedule. It’s about letting joy, whether on a down day or an up, define me.

The Lesson:

Joy is whenever you look for it! Even in scraps of minutes or an hour. Let that be your focus, and your resilience will astound you!

My Pain Management Strategies

2

Mighty Mind Strategies for Managing Pain

 

Over the past year, I have become an expert in pain, something I never wanted to be. However, daily severe muscle spasms, cramping, one surgery, and an Emergency Room visit later, here I am. Despite my plethora of pain medication, I still suffered. Then, I realized that I needed to engage my mind to manage the pain. I devised a few strategies to cope with the pain, which I will share with you now. Keep in mind that pain is highly personal. Just because these strategies work for me doesn’t guarantee they will help you. However, I sincerely hope that they do.

 

1. Put your pain in a vessel – I visualize a large clay jar. I imagine shouting my pain into this jar, pouring it all in until there is no pain left in me. I put a lid on the jar, locking all the pain away. Then, as the pain ends, I set my jar in a river and watch the water carry it away.

2. Let the pain wash over you – For this strategy, I picture myself as a boulder in a stream. The pain is the water moving around me, insignificant and unable to affect me. When I was in an ambulance, this one actually took my pain down from a 7 to a 3.

 

3. Meditate on the temporary nature of pain – My best friend is training to be a vet, and one of the toughest things about her job is that she can’t communicate to the animals that their pain will end after she treats them. As humans, we have the gift of understanding time, and that how we feel now probably won’t last forever. I have such a terrible time with chronic muscle pain due to severe spasms that I have been unable to write my column for months. Part of what gets me through this nightmare is focusing on the relief I will have when my pain medication kicks in. I know that in one hour, the medicine will take the pain away.

4. Cry, scream and beg – I used to think crying and vocalizing my pain meant I was weak. Now I know that it actually helps. I tend to hold my breath when I am in pain. When I vocalize, I have to inhale. It also gives someone a cue to comfort me by making my suffering visible. I have a theory that pain is much less powerful when you don’t have to experience it alone.

For the Love of Dog

 

2

I have become a tobii wizard. It’s true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly – all at a speed that constantly wows clinicians. Despite my skills, though, using the tobii is still taxing work. I will never be fast enough to keep up with the natural flow of conversation. Still, I hurry and exhaust myself in the process.

However, there is one individual who eases the tension of the race to communicate because she is also nonverbal. For five years, Malka (introduced in “Someone to Watch Over Me”) has been my faithful, furry companion. On the surface, we don’t have much in common: she has four legs and I have wheels, she swallows her kibble whole and a gravity bag slowly drips formula into my stomach. I am becoming  more mechanical, and she remains pure, divine animal. But when we lay down side by side, we speak our own secret language. Eye contact and perked ears or my raised brows, touches, wiggles, and wags… There’s nothing we can’t say, and our talks are just my speed. She’s a source of solace like no other as I fight the monster inside of me, and sometimes when she looks at me, I swear she understands what I am fighting and her role in the battle. I am endlessly grateful for my silent soldier.

This song reminds me of my fur baby every time I hear it. It also reminds me of Evan, but pretty much everything does. “We laugh until our ribs get sore, sharing beds like little kids” even though everything outside of them grows scary. At least we have each other.

Spring Born

 

Warmth tempts my berry tipped toes

to the opening of my den.

I crouch by new grass blades

sharp with the bitter scent of promise.

 

I am spring born.

 

What was my life before this long darkness?

Before this crescent edge of sun?

Do the trees stand exactly as they used to,

cutting out room for my shadow

in their own greater  shade?

Does the river carve out the spots where I used to stand

in hopes that my feet will

nestle in its water again?

 

I take one step forward

into the–

 

I am spring born.

Getting Back My Voice?

3

2

This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!

“I’m shouting hard… This is the start!”

Thought Point: On Finding Meaning through Chronic Illness

This beautiful writer hits on one of the greatest points of pain for people with ALS. We’re all wondering why this mysterious disease with no known cause or cure chose us. Every day, I think, “Why me?” Read on to learn the exact reason I write and how sharing your own story can improve your mental health.

When you have a chronic illness, you’ll inevitably hit a point where your mental health starts to suffer. No one likes to be limited by factors outside of their control, and living with ongoing health problems is the pinnacle of just that: a steady, uncompromising burden to which you relinquish autonomy. Of course, with certain conditions there are things you can do to minimize the disruption it causes to your day-to-day life; but when all is said and done, it’s still a weight that colours your existence in a significant way. And it’s nearly impossible to have that fact not take a toll on your mental wellbeing.

One aspect I continue to struggle with is making any sense of why I got sick in the first place, and for so long. I don’t get why, a month after starting my third year of university, I came down with a flu-like…

View original post 695 more words