Pursuing Your Passions In Spite of MS

Today, July 31, 2015 is World MS Trend Day. It is a day to raise awareness about Multiple Sclerosis on social media. There are so many ways I would like the world to better understand this illness I suffer from, so it’s hard to pick one aspect of this illness to write about, but here goes!

One of the ways MS affects many of us is it robs us of the things we’re passionate about. Sometimes we have no choice but to give them up, but a lot of the time if we think strategically we can hang on to the activities we love by pacing ourselves or doing them on a smaller scale. I want to share with you a bit of my story and a few ways I have found to continue doing the things I love. I have also included at the end a tutorial for putting together your own flowering pots for your porch or patio.

I have a passion for growing things. From early childhood it has been an important part of my life. It’s a lot more difficult with Multiple Sclerosis, but I have still found little ways to squeeze it in.

My parents and grandma Annie inspired me to grow things from a young age. The first time I had my very own garden I was seven years old. My brothers and I were each given a 5′ x 7′ plot which my dad tilled up and he and mom helped us plant. It was our responsibility to make sure that our garden was properly cared for. At first I was bored with the work of planting the seeds and prepping. I would water and stare at the dirt and get frustrated when plants didn’t just pop out of the ground, but from the moment the first radish peeked its green heart shaped leaves through the soil I was hooked! After that I was out there first thing every morning to see if anything else had sprung up. It seemed like magic! Thinning-radish-seedlings1My father would reminisce about finding me on my knees in the dirt making war on weeds with full explosion sound effects as each weed was dispatched from this world. I no longer make machine gun or cannon fire sounds while weeding, but to this day it is therapeutic to be outside with my toes in the dirt. It is a reminder of happy times with my family.

As a Christian the garden was my favorite place to go to be alone and hear from God. Something about being out in his creation makes me feel closer to Him. In all reality God is always right with me, but being out in the stillness of the garden helps me to feel His presence and hear His voice more clearly. Isn’t that what Christianity is about? Intimacy with God? To know Him and be known by Him? Living out in the country I could sing or pray out loud and there was no one around to comment on whether I was on key or lacking in sanity! It was an awesome way for me to get out and adjust my perspective.

Since my diagnosis of Multiple Sclerosis in 2001 gardening has become more and more difficult. I don’t have the stamina for the huge garden I used to have. The slightest bit of heat makes me severely ill and I cannot make my body cooperate. Looking back I was quite stubborn after my initial MS diagnosis. I was coming to terms with being sick and unable to do everything I did before. Our yard was almost an entire acre to care for, with a garden, chicken coop, koi pond and small orchard. It was everything with which I had dreamed of raising my kids. When we bought the house in 1997, I was 23 and had already begun having odd symptoms; twitching in my legs when I was tired, dizziness in the sun, shaking with exercise. Two years later in 1999 at age 25, I woke up blind in my left eye one morning. I had optic neuritis and wore an eye patch for two months before my vision began to return. I still would not have a diagnosis until two years later at age 27 when one day I became paralyzed on the entire right side of my body. All I could feel on that side was intense paresthesia (pins and needles). When sensation slowly returned four months later it quickly became apparent that I would never be the same.

Having the huge garden was not only hard on my body, it was also difficult for my family to witness the emotional crash at harvest time when I could not possibly process and store all of that produce. As a child I was taught to never waste food. In 1985 I was 11 years old and Michael Jackson was one of my favorite singers! He and other stars collaborated to make a video for the song “We Are The World.” to bring attention to the masses starving in Ethiopia. I loved that song! I sang it and watched the video over, and over again! The videos of those children with their little starving bellies touched me deeply. My Grandmother, who played a huge role in raising me, grew up in the Great Depression. Her dinnertime prayers always mentioned the children starving in Africa (and a multitude of other places). I still hear voices from my childhood telling me to clean my plate when I eat! In my garden I would plant so much then run myself ragged and push myself into a flare up! The tears would inevitably come followed by grieving about what I used to be able to do.  Dad visited in the spring with my older brother to till up the ground, and get it ready for me to plant. Grandma would visit at harvest and “help” me can salsa, applesauce and jams. Her “helping” actually consisted of her doing most of the work herself with my two daughters while still trying to make me feel useful. She would have me sit up on a stool by the stove stirring the pot while she bustled around doing all of the hard work. I felt like a little kid again…and not in a good way. Nowadays I am trying to be honest with myself about my limitations, and more in tune with my body’s needs. That could seem depressing, however I am all about learning from history so I am trying to work out a better way to fulfill my need to grow and nurture things without putting myself and others through unnecessary hardship.  The words “low maintenance” often cross my lips when researching and planning projects for my home and yard.

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My Glorious Zen Garden

After my divorce almost 7 years ago I moved into an apartment for a while and pined away for my beautiful garden spot with its rich soil. I had worked for 11 years to get it just right turning it from solid orange clay to dark rich fertile soil, only to have to leave it when my marriage had become unbearable. My daughter Dani bought me a tiny Zen garden as a housewarming gift for our little apartment in town joking that she knew I couldn’t survive without a little dirt to rearrange each day; and rearrange it I did! Do you know how many groovy patterns of wavy lines you can fit into a 2 1/2″ by 3″ box of sand? Too many! The whole family got into leaving each other messages in the sand! When Chris and I started dating he did the most romantic thing ever and bought me an Aerogarden for my apartment. I loved it! With it I could grow six different types of herbs at once. It felt so good to grow things again and have fresh herbs growing inside in the middle of winter! If you have MS and absolutely can’t get out of the house to garden, I strongly recommend trying an Aerogarden. My father loved it when he was suffering from cancer. It is small and easy to start and maintain. Mine fit nicely on my small filing cabinet and I could sit in a chair with it at eye level and work on my plants. The amount of produce you can grow with one is fantastic! They now have versions that can grow bigger things like tomatoes and peppers. It’s worth a try!

Chris and I are now married and homeowners. We are on our fifth summer in this house, and still no garden. Why? I’ll give you one guess, (it starts with an M and ends with an S). I have a small flower bed and we bought the materials to build a nice raised bed for a salsa garden someday, and we’ll get to that, but gone are the days of plowing up new ground to my heart’s content when I run out of room to grow something new, and ending up with a monstrosity of a garden that I could never truly care for in my condition.

I started out in 2010 by buying a couple of nice pots to flank my patio steps and I replant them with a riot of color every spring. I’ve been adding more potted flowers the past couple of 125hfyears. I planted hanging fuchsias and I hired a student last spring to help me dig the quack grass out of my flower bed and make it low maintenance. I planted a potted cherry tomato plant and some basil to my patio last summer. I have spent the past four years in this house surrounding myself with beauty one pot at a time. It is about doing what I can, when I can, and seizing the little opportunities when I do feel well enough to function.

Here are a few things I did to save energy while still participating in the growing season:

  • Downsize to a container or patio garden to keep plantings closer to the house and within practical reach on difficult days.
  • Use lightweight containers to minimize lifting, or raised containers/beds to minimize uncomfortable working positions, or having to go from bending down to standing repeatedly.
  • Avoid getting overheated. Work either in early morning or later in the evening when the temperatures are cooler or wear cooling gear. The National MS Society provided me with a great cooling vest for free.
  • Don’t be afraid to ask for help with the heavy things, or if you can afford it, hire help. Sometimes just having a student come for a day to do a job that is too big for you is a very affordable solution.
  • Take joy in the little accomplishments and focus on beauty. Sometimes I finish a job and all I can think about are the next three things on my to do list. Don’t allow the things you have yet to get done keep you from appreciating a job well done or a step completed in the process.

 

I think the flowers I planted last year turned out beautifully. The following is a tutorial for potting your own flowers:284PP

Planting time last year was one of the most difficult for me physically and emotionally. Spring had been around for a couple of months and as usual I was behind the eight ball when it came to my outdoor projects. I’m not sure what it is about that season, but many of my major flare ups have taken place at that time. March and April were spent with an exacerbation, steroid treatments and med changes. At the same time my father was losing his fight with cancer, and my dear 93 year old Grandmother was dying. She left this world on April 11, 2014. Two weeks later my maternal grandpa died. I was devastated and my MS reflected that.

With Grandma gone I struggled to plant anything. By the time I got out of my funk and to the garden center in June to buy plants many were a bit overgrown and leggy. I usually try to buy young plants that are healthy and not yet root bound. Still I made my selections because my grandmother would hate for me to be surrounded by anything but life and beauty, and I refused to have the glory of the season robbed from me by this disease again. I also made sure to buy a new Peace Rose this spring because it was Grandma’s favorite. So here is my offering for last summer. I hope you like it!

The Pot

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First: To keep the pot from getting too heavy when planting a large container my Granny taught me to take an old smaller pot and place it upside down in the larger pot before filling with dirt and planting. It makes them so much lighter and a lot easier to move around.

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Thriller, Filler, Spiller

My Grandma used to work summers at her sister’s greenhouse and flower shop. She told me years ago that when planting in pots you want a thriller, a filler and a spiller. For my “thriller” I chose white Snapdragons, with a Spike Dracena to plant in the center of my pot. For a filler they had these lovely fuchsia Geraniums and lavender and purple Petunias. My spiller was Creeping Jenny with Trailing Bacopa planted around the outer edge.

When finished I gave it all a good watering. These graced my front steps for the rest of the summer last year. Better late than never!

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I feel that with a chronic illness like MS, we have to be purposeful, and strategic about maintaining our passions, and the things that bring us joy and fulfillment. There are times when it has actually been easier for me to hide out and let time, stress and pain take its course. I’ll look up and realize that months have gone by and a chunk of my life has gone to the MonSter. I am doing everything in my power to fight back, retain my identity, my moxie the person God has called me to be!  What are some measures you take to keep from overdoing it, while still doing the things you are passionate about?

“For I am convinced that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” Romans 8:38-39

Dear Readers: I am dedicating this post to my Dad Curt, Grandma Annie and Grandpa Jim, who all went to be with Jesus this past year. They left behind them a deep love of family, the outdoors and all growing things.  ♥

 

6 comments

    • says:

      Hello Heidi,
      Thank you for reading! Yes, one very deliberate step at a time. I’m learning to be very purposeful about the things I want to be a part of. It’s a process that I am finding a lot more joy in lately. Blessings and hugs!

  1. Cathy Raincrow says:

    I was becoming paralyzed on my left side but therapy is helping me. As I persever down the road the Lord has prepared for me, depending on His strength to sustain me, I expect to see miracles…… And I do! I totally depend on His strength to see me through. I want to walk again without my Walker, and I will.

    • says:

      Thank you for your comment Cathy! It is so encouraging to hear from others who are walking through these hardships in faith! God is good and his sustaining power is what keeps me going every day, no matter how difficult. I pray that he would bless and help you to walk unassisted again. That he would give you all the tools you need to get there. I have seen his miracles too. 23 years ago a tumor the size of a tennis ball was found in my abdomen. I went and had believers lay hands on me and pray and when I went in the next week for a follow up ultrasound, it was gone. Don’t ever lose hope, God is able! 🙂

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