http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/multiple-sclerosis-detente/
http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/kindness-we-can-do-ourselves/
I know... it has been a while since the last time I pushed a blog up. Seems there were a couple of holidays, a major work trip, lots of minor work trips, swim lessons, Girl Scouts, you know the usual for me. The last twelve weeks have had my head spinning and made it hard to catch my breath.
It has been overwhelming to be honest. I was a bit down going into the holidays. Nearly a year since my official MS diagnosis with last year being a whirlwind of diagnosis, research, making a plan, executing and adjusting the plan, bumping up against limitations, and breaking through a few. I had everything to prove... to myself. But there was a nagging at the back of my mind the waiting for the other shoe to drop. It is so hard to know what the future holds and I catch myself falling into MS patient with obvious physical deficiencies where my head is telling me something isn't working quite right (spasticity in my hand, a tightness ring on my calf, the nearly constant mild tingling in my hands and feet, and sporadic bladder malfunctions) and fearing the future.
I was finding that even things I love like my job (overwhelmingly busy), my pool time (too many people waiting for a lane, crazy water temps, people not using good pool manners), time with the kids (pestered by the Christmas bug of "I wants", fair versus equal, and a budding tween) was just leaving me irritable.
We were driving to Muscatine for time with my folks families and I was reading a book on mindfullness and it gave an exercise to change my perspective. Last Christmas I struggled with the natural flow of change with family members not able to come and traditions that have a shifted a bit. It makes me sad but I wanted to go into this holiday with a more positive outlook and it worked. I didn't spend hardly any time dragging the MS anchor along, it was all about eating and catching up over laughter and building good new memories.
I have had a few hiccups since Christmas. I ran out of my MitoQ which is a CoQ10 that is formulated to work at the cellular level. I knew the three months I was taking it was making a big difference because I didn't have any fatigue for three months. I was thinking more clearly and feeling more like myself... and then I ran out. It runs around $55 a bottle for a month and I have to order it shipped from New Zealand in three month batches so we have to have it in the budget when it is time for a refil and do it three weeks before I need it. Well the three weeks while I waited for my new supply were pretty rough. One day I was in a meeting with a few office mates and was handed the dry erase marker and was writing down brainstorming ideas. While writing a couple of words I got lost in the middle and had to ask for help to get to the end. I also had a mild fatigue attack. I found myself cursing at the mail box after two weeks and was overjoyed when my new supply arrived. Back to having more clear more complete thoughts and more energy again. So very grateful!!
My family also spent last year putting positive thoughts and experiences in a jar to look at at the end of the year. I had to empty the jar to make room for 2015 so I have them all in a baggie for us to look at together. I read a few on my own one day and here are a few that brought a smile to my face:
* volunteer sunflowers along the side fence line
* joy and bliss on my kids faces
* snuggles and giggles with my kids
* work travels that let me experience American history
* food at first volunteering
* Girl Scout camp adventures
The other good thing that rolled into my life is the new MS Support group meeting in Ames. When I went into a life with MS I vowed that it would be a positive part of my life and that I would stay away from people with MS who had a negative focus. This group is twenty strong with a wonderful mix of people in all stages of MS, newbies like me and old hands at navigating this illness. I am excited by what the future holds for all of us to be able to share information, support each other and grow as a family of survivors. A lovely woman sitting next to me was diagnosed in the late 80s and she said what I was thinking the other night. She mentioned she spent the first ten years waiting for that other shoe to drop and it never did. She said she finally got to the point where she is just living her life and stopped the waiting game.
I have to be honest I am not there yet. My decline had been so rapid and persistent the two years before my diagnosis it is scary to think where things would be without meds, diet changes and more focus on what is important. But my neurologist is positive with my response to the meds and feels like I am on the right track. The constant encouraging research strides are also a positive light for me and all my MS family bringing real hope for tomorrow. So I look into the new year with a life and determination to be the me I want to be ... I have hope and time to wait... with my shoes at the door ready for the adventures life brings me.
Wishing you all a most wonderful new year full of opportunities for learning and adventures. Until next time.
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