MS has been one of the best things that  happened to me. No, really.

girlpower Dide
Posted November 9, 2021 from United States

  

I spent most of my life taking care of other people. I worked in nursing homes, foster care homes, and as an outreach worker for people with disabilities. I worked twenty years helping them live independently in their own apartments. I supported them with a myriad of tasks: shopping, banking, advocacy, problem-solving, crisis intervention. I was on call for five days a week and it was very stressful. But it was my passion so it wasn’t unusual for me to put in 12 hours a day; then to come home working well into the night to get paperwork done, write care plans, and plan for my staff meetings where I supervised three assistants. 

So, it was rather ironic when I got MS and I was forced to retire at 53. It forced me to stop taking care of everyone else and to focus on my health. I slowed down, found time to read, write and enjoy my gardens and potted plants, and cook meals by scratch for Mark, my life mate.

Well, one day when cleaning out my closets, I found my journals from when I first moved to Oregon when I worked in the Wallowa Mountains doing timber inventory, living in my tent, working in wilderness areas. Well, as I sat there reading and chuckling, I thought ‘this would make a good book’. I started writing and produced three books that are in “The Eve Chronicles”. If I wouldn't have gotten MS, I never would have had the time to write my books. Check out my author page at amazon.com. 

Another shift in my life was realizing that I had to get rid of any toxic emotions or toxic people. I couldn't have them in my life because they drained my energy and psyche, and they literally made me physically ill. I joke that now “It's all about me”!

I have Progressive MS, and in twelve years I haven't gotten worse. I have a half-paralyzed leg and wear a brace to keep my foot from dropping down and tripping me, I have severe back pain caused by pulling my leg around when walking. Another adjustment was that I can’t tolerate heat, so being outside, if it’s over 80 degrees and I stay out in it too long, I get vertigo.

I also have unbelievable fatigue. I have to save my energy to last all day. It's like I have a bucket of water which is my energy, and every task I do it's like taking a ladle full of water out. So, I have to pace myself in order to have enough energy to last all day. 

The best thing for me is exercise. Twice a day I ride my inside bike for 45 minutes and twice a week I swim laps for an hour. I feel better mentally and physically and I think the exercise is keeping my half-paralyzed leg keep from atrophy.

I also produced my CD named “Camas Swale” check it out on Bandcamp.  

My yard is my pride and joy, my lush flower gardens are brimming with fern, Hosta’s, calla lilies. I have two porches full of big pots filled with saliva, marigold, lavender, heather, basil, oregano, thyme, sage, and Lily of the Nile. I have a raised bed garden where I grow everything to make homemade salsa: onions, tomatoes, peppers, and lettuce and spinach for salads.

I have to pace myself, working a half-hour at a time before I have to lay down and stop my back pain. Then it's up again for another short spurt of energy.

MS has been very good to me.

Who knows what the future will be? But I'm fine with whatever comes my way.

This story was submitted in response to Disability Justice.

Comments 5

Log in or register to post comments
Susu Mohamed
Nov 09
Nov 09

Dear Didiy,
wow i loved your story and how you supported disability peoples and your self stay strong wish you health and happy in your life.
my community i am supporting them and giving the first priority to them.
much love hugs.
suu

Corine Milano
Nov 11
Nov 11

What a powerful story and reflection on your experience being diagnosed with MS. World Pulse will be highlighting it in tomorrow's digest that goes out to the community. Be on the lookout in your email! Congrats for being featured - and thank you for sharing your story! You have been a part of World Pulse for so long and I just love learning more about you!

Tamarack Verrall
Nov 11
Nov 11

Dera Girlpower,
I too really enjoyed learning more about you having been in touch here for some time now. What amazing turns of events, and what wisdom and careful self love are woven in. Strong lessons for us all. Great photo of you. Lovely to see you.

ARREY- ECHI
Nov 12
Nov 12

Dear Didiy,
I hope you are doing well.
Thank you for sharing this powerful story. It is great to read how you turn around your MS diagnosis into a powerful period in your life. You are a courageous woman.
Wishing you all the very best with the new adventures MS accords you.

Amelework Yilma
Nov 14
Nov 14

WOW you are strong. Good for you kipp up your self. But steal you are look after you grand children thats more work on you. You have to rest. KIPP be