Life With MS:
Lately, life has been reverting back to simple things. My days play out in a pattern dictated by my body, what it can tolerate and what functions it needs to perform. I have learned to adjust, but living with MS is a constant adjustment and forever a lesson in patience. Nothing stays the same for very long anymore.
Each day presents a battle to not be overcome with how I feel. The muscle spasms, general tightness, and weakness, burning or prickling pain, and the frustration over the lack of being able to do simple tasks or perform autonomic functions can easily become too much to handle if I don’t try to stay positive.
I have had a little help from an electric wheelchair that has been loaned to me, and it has made life easier. Hopefully, I’ll get my own soon if it goes through insurance. I use it mostly in the morning when I have more pain and feel weaker. It has really helped me get around.
My days are pretty simple. I’ve established a new schedule, factoring in my decreased ability and fatigue. It seems to be working for me.
My Rough Schedule:
- getting up 4-6:00 AM
- resting for a bit and slathering my back and calves with magnesium and essential oil rubs 6-7 AM
- Breakfast and watching a little TV 7-9AM
- showering and getting ready 9-10:30 AM
(Morning is the most difficult part of the day for me, thus everything takes longer than it usually would.)
- sitting in my wheelchair in the sun with Ruby, my mini Yorkie, for a bit and praying 10:30 to 11:00 AM
- working on my social media posts and author business 11:00 AM-12:30 PM
- lunch and a rest time 12:30-2:00
- more author business, writing, or a small household task I can manage by myself 2:00-4:00 PM
- Rest 4:00-5:00 PM
- supper and time with my hubby 5:00-7:00 PM
- Exercise 7:00-7:30 PM
- Rest 7:30-8:00 PM
- getting ready for bed 8:00 PM
- reading 8:30-10:30 PM
- bed 10:30-11:00 PM
Not too glamorous, but that’s how my days usually roll out, more or less.
I’m slowly working toward getting three more books published this year. My second book, Violet’s Vow, in my novella series, Botanical Seasons, will be released this spring. Each book in the series takes place during a different season of the year. I plan to release the next two in 2022, provided I am able to do so.
This summer, I plan to release my third book, On Bur Oak Ridge, in my Sheltering Trees series, and this winter, the fourth, By Broken Birch Bay, will hit the press.
Currently, I am finding pleasure in writing a fairy tale called The Regal Pink, based on an old Grimm’s tale entitled, The Pink. I plan on sharing more about this one soon! So far, it’s shaping up to be a story with a little adventure, romance, inspiration, and a few twists.
As an independent author, it’s a big undertaking to get a book ready for market and a hefty expense. With my health changing, I’ll most likely be needing to pay for personal care soon, and my publishing money will likely have to be reallocated for that. But that’s tomorrow, and this is today.
So for now, I take joy in the simple things: warm sunlight streaming into my window, colorful orchids and violets blooming nearby, my sweet dog curled up on my lap as I sit in my wheelchair, the fragrance of ground coffee beans, the love of God in my heart, my fingers to tap my stories into my iPad, a warm cup of tea, and a good book in my hand.
Hope for Tomorrow:
None of us know how many tomorrows we have. I’m beginning to think that I might not have all that many left, but that’s okay. I fix my eyes on what’s ahead—a far better place than this one.
11 thoughts on “My Life in a Nutshell, Lately”
Jenny….I am so sorry the way life is going for you. I have my difficulties but they are no where near yours. I have to let you know what an inspiration you are to me! When I’m feeling left down and the why me’s come…..I think of you and this e-mail I will keep forever!!! It truly does help! I am a big fan of your books and now knowing just how hard it is for you to get them out….I will treasure them even more! I am looking forward to ALL of them this year….the Botanical Season and of course The Sheltering Trees! Thank you for all you do and give us!!! I pray for easy days for you and hope there are many tomorrows!!!
With Love and Prayers
Thank you, Lisa for reading my thoughts. I am so happy that I have encouraged you! I so appreciate you as a reader and a friend. Thank you for taking the time to share your kind message with me.❤️
Dear Jenny, Thank you for sharing this very honest post about your life. My heart goes out to you and want to assure you will be in my daily prayers. I’m not sure if you have heard of Kate Bowler- a young mom (and religion professor at Duke University) who was diagnosed with Stage 4 cancer a few years ago. Kate is a wonderful non-fiction writer and she has recently written a series of blessings.
I’d like to share one with you. You can follow Kate on IG.
For when you just can’t find any peace
God, I am troubled in spirit and there doesn’t seem to be an end to it.
show me the way toward peace.
I look up at the vast size of the mountains—from where will my help come in times of trouble? Psalm 121
Thank You for the freedom that comes
when I begin to admit
at how powerless I feel, how small,
amid the mountains of trouble.
God, in this dark valley, let Your light reach me;
let Your Spirit comfort me.
help me understand how my body and mind and heart
can be at peace even here.
O Creator of heaven and earth and these mountains,
who created even me,
shelter me, live in me, breathe in me here,
alongside all that is too vast to comprehend
blessed are we who say yes,
this small space is suddenly spacious,
and more than enough light and peace
coming as it does from You
right here with me.
God, I’m going to go for gold here and ask for world peace. and peace in my life too.
Jesus said, “I have told you these things so that you will be whole and at peace.”
Thank you for sharing this, Brenda. No, I’ve not heard of her. I love these thoughts! I’m trusting Him too for more than enough light and peace.
Often times people try to fix my troubles instead of simply listening and lending encouragement. Thanks for being the kind of friend that does the latter.
Thank you for sharing such intimate details about your life and your struggle. I find so much beauty and hope in your words. Your faith and grace are inspiring to me.
I am so sorry that you are having to go through this difficult journey. You are in my thoughts and in my prayers.
With so much love,
Thank you for reading my post. I so appreciate your kindness. Thank you for your friendship and prayers. ❤️
My goodness, this routine seems very constraining, still-I mean, 4 am till 11 pm is a long day, but I guess with the rest times, it’s a doable situation for you ❤️❤️🙏🙏. I pray for you quite often, Jenny! Love your fighting spirit and your Christian spirit!! 💕💕💕
I’d love to sleep longer in my bed, but I’m in too much pain to. I do best with a rough schedule.
Thank you. I appreciate your friendship and prayers so much! ❤️🙏
You sure have a lot on you. I will be praying for you. I’d love to be able to help. I know my husband would help with proofreading if need be. I promise he’s really good at it – the issues with my book were not his fault. Haha! One day at a time but sometimes one hour a time, right?
Thank you! I appreciate your prayers so much. 💗 Thanks for the offer! I’ll think about it. 😀
I swear we can catch things when it’s not our own work! 🤣😂😂