Wednesday

Making Friends with My MS

Needed this today!

I spend enough energy being angry at my MS. And what's the point? It just tires me out and uses what little energy I have. I am always looking for those times when I exert too much of my precious energy and see how I can do things differently to preserve this special commodity. To me this is the very tool that helps me manage my MS.
When I received my cool little bracelet from CJFreely yesterday as part of Nancy Davis' RacetoEraceMS program, well, I thought, this is just like a friendship bracelet. And bam, it hit me, time to truly make friends with my MS!
While I'm Not a hand model by any means, I love looking down at this little reminder that I can be friends with my MS. But how?
How do I do this? How do I make friends with a disease that ravishes my body on a daily basis and tries as it it may to dictate my life? This is a tough one.
First off, I'm making a list of things I'm grateful and thankful for:
  1. Learning to ask for help
  2. Learning to slow down and smell the roses
  3. Leaving the corporate world for the creative world
  4. Getting to know my parents as peers and friends by living with them
  5. Learning to ask for help. I could mention this one many times!
  6. Learning to live off a very, very small income.
  7. Learning to be poor with money, rich with life.
  8. Learning who my true friends are and will be.
  9. Learning what my limitations are and realizing they aren't that bad
  10. Meeting lots of cool new people and friends around the world with MS
  11. Knowing that my blog and info has helped at least one person deal better with this disease.
  12. Learning again what is important in life. Waking. Breathing. Living.
  13. Friends and family, couldn't do this without them.
  14. Limitations and boundaries. Learning how to make those more definite.
  15. Turning from a power player to a finesse player.
  16. Learning to listen to my body and respond accordingly
I know there's more but this is a good start this Thursday morning.
I think its good to also acknowledge what I don't like about MS in order to get the full picture. This will help me decide where I can improve in managing my MS.
  1. Unreliable. MS randomness makes it difficult to stick to plans.
  2. Each day is different. Pain, balance, cognitive, tremors, incontinence, vision, fatigue
  3. Inability to drive beyond local streets
  4. Panic attacks for no reason.
  5. Fatigue fatigue fatigue.
  6. Tired eyes, inability to read at times.
  7. Dry heaving, spasms makes it difficult to eat or have appetite.
  8. Muscle spasms at night make it difficult to sleep. Restless leg syndrome bums.
  9. Tremors tremors tremors. Hands and neck
  10. Clumsiness. Dropping things right and left.
  11. Loosing balance. Breaking toes.
  12. Folks not understanding the illness
  13. Randomness of it all
  14. Emotional rollercoaster
Things I've learned to say to myself:
#itisWhatitis
#takeThatMS
#NoTwotheSame
Things that help me befriend my illness:
  1. MS community on Twitter @thegirlwithms
  2. Family
  3. Friends
  4. Writing and the arts. The cathartic process.
  5. Becoming better friends with myself. This is a tough one. I'm not easy on myself and learning compassion for my illness and health is key.
  6. Finding a great neurologist to travel with on this journey. I still need one of these!
  7. Being open and honest about the disease. Building awareness and letting folks know that there are ways to manage MS beyond traditional western medicine.
  8. Research! There is so much new information about MS on social media and in books.
  9. Become my own health advocate. No one is going to do it for me!
  10. My Christian community at church.
  11. Learning that it's OK to take naps and be a couch potato at times. (This is a tough one for me!)
Bottom line, in spite of MS:
I'm living a different life then expected yet a beautiful life with many opportunities and options.
Keep all doors open with this disease. You may have always defined yourself as a "strong corporate, get things done type VP" and then bam, the rug is ripped out from under you.
Time to redefine ourselves. That's what I did. Imagined and visualized all the things I loved in life since childhood. Which of things can I do? What have I always wanted to do and what is still possible?
Fortunately I hade a very full life prior to MS: successful career, horse trainer, river guide, adventure athlete, runner, mt biker, ww kayaker, rock climber and even jumped out of planes.
But that surely doesn't mean I'm done living!
I'm finding out what I can do and what I can't. I think this is a continual thought process with this disease. And while some days I can do some things there are days I can't even get out of bed.
Take advantage of every second and every minute! Even if we are bed ridden, cane assisted, or walking three miles, every part of your life can change with MS.
Get ready to go with the flow and let's do this!
Time to become friends with our MS!



2 comments:

Alyisha Andrew said...

Hi Caroline,

You don't know me my name is Alyisha,19years old and live in England I have also got MS and had it since I was 6years old. I wondered if you could answer a few questions. What happens if you believe that there is no happiness even on a bad day. I don't have any family to talk to me other than my parents but there drained and I have no Friends everyone has successfully managed too let me down. I want to know how you can get your confidence back and how you can meet people without feeling that I am a the major inconvenience
If you would be so kind to get back to me

I would love to know how I can think better

kind regards

Alyisha

Caroline Craven said...

Hi Alyisha,
So nice to hear from you!
I'm sorry things are so tough for you right now. That's really tough. I'd love to chat if you have time. We can skype if that works.
Wits MS we have to learn to love ourselves again. Which can be so difficult with out broken bodies. But we are here and present. So let's make the most of it!
Feel free to e mail me and we will find a time to skype.
Thegirlwithms@gmail.com