The MS Shuffle: A Few Steps Forward, Several Steps Back
When moving about with MS is a part of your life, there is seldom a dull moment. It's like no matter what you go through, MS is always there dancing and scatting through your circumstances. Its shenanigans seem to set you back and forth and to and fro causing a lifelong shuffling about in the attempt to get right. That's why I say the 'MS Shuffle'. As you're living your life, doing the best you can with what you have, WHAM! Something else comes along that is unfortunately all by itself, but MS finds a way to bop itself in and the shuffle begins.
A unexpected hospital stay
April didn't just bring in showers to create and beautify May flowers. For me, it brought in abdominal pains that went from a puzzling "Hmmm…?" to an excruciating "ARRGHH!!" by Easter Sunday, prompting a 911 call about 6:00 that Monday morning. The ER visit produced a diagnosis of acute pancreatitis, orders for immediate hospital admission, round-the-clock pain medicine, a clear liquid diet, and an abundance of intravenous fluids.
The day after admittance, the doctor and surgeon paid me a visit to advise they felt it necessary to remove my gallbladder. Surgery?! They explained to me that gallstones can occasionally block the flow of bile and irritate the pancreas. Hence, my acute pancreatitis diagnosis. Removing my gallbladder would prevent further troubles with it. Finally, after a most uncomfortable and long nine-day stay in the hospital, including the surgery and laparoscopic cholecystectomy, I was discharged.
Setbacks: MS and otherwise
Now, recovery from this particular type of surgery doesn't take very long. The temporary side effects may include swollen, bruised and painful wounds at the incision areas, feeling sick as a result of the anesthetic or painkillers you have been given, pain in your tummy and shoulders as a result of the gas used to inflate your abdomen during surgery, and bloating, flatulence and diarrhea. Trust me, I experienced it all. However, with all of that unpleasantry, not to be outdone, outshined, or ignored was trusty 'ole multiple sclerosis. Obnoxious MS was ready to compound my situation or ready to dance...And the MS shuffle began.
Living with secondary progressive MS
In secondary progressive, my baseline isn't much with an extreme loss of my fine and gross motor skills. BUT, physical and occupational therapy helps tremendously. Everything counts and the smallest things matter to help me with my functionality like positioning, comfort and rest for example. Imagine for nine days, all of that is removed. In the hospital, the bed is extremely uncomfortable. I can't get comfortable, can't get positioned right, can't sleep. Their chair is no better. I can't use my hands to feed myself, do activities on my phone which I utilize daily for everything. I don't use my legs as they use the Hoyer lift because I can't stand from the bed for transferring. And I have had no therapy so my already compromised muscles are even worse than they were pre-hospitalization.
Shuffling aroud the setbacks
Now I am home. Now I'm starting from zilch. Now I'm doing the MS shuffle trying to figure out how I can do this and do that. Finally feeling I'd shuffled some steps forward after breaking my foot several months ago, I've shuffled backward with this ordeal. I've been home a few weeks now and I've had some positive moves, but I'm still doing this dance with MS that'll stop at nothing to keep me shuffling to stay in the game. For someone who enjoyed a good bout on the dance floor, I must say I enjoyed the Electric Slide, Cupid Shuffle, or Wobble (and now, Dianne's Wave) much better than the MS Shuffle. But, hey, if I could conquer those, I can hang with this one too!
*I wanted to share this tidbit for those who may not have known and I only found out, unfortunately, at the conclusion of my hospital stay: While in the hospital, you can request PT and/or OT services. I felt it was a disservice that I wasn't offered it, especially given my condition.
Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.
Join the conversation