Can you turn on a dime?
I used to think so. I worked full-time, my opera singing husband’s schedule was definitely not 9-5, and we had 2 adorable little boys. Even though I had MS, I could still juggle. If hubby’s schedule suddenly changed and he wouldn’t be home until after 10pm, no worries – I got this. Sure, the house was a mess, and I did take long naps on the weekends, but hey, we were making it work. I couldn’t stay outside for long on hot days, and I did have to get IV infusions for a brief bout with double vision, but MS was just a mild irritant in my day-to-day world.
Until it wasn’t. My doctor suggested I get a cane. I didn’t want it to look clinical so I asked my husband to get me a cool cane. He felt guilty giving it to me as a birthday gift, but I was beaming as I saw the collapsible cane covered with multi-colored paint streaks. It met all cool cane criteria. One of many reasons why I still adore him after more than 20 years together. The cane worked great.
Until it didn’t. My left leg was weaker, but then it started to swell. I thought it was just a side effect of a new medicine, so I stopped taking it. But the leg continued to swell until the day a doctor looked at it and sent me straight to the ER – no passing Go, definitely no collecting $200. The swelling wasn’t because of medicine, but by a large blood clot in my leg (deep vein thrombosis, or DVT). They got out the clot at the hospital, but DVT recovery takes months.
One cool thing happened while I was in the hospital. Doctors usually put in a filter so that none of it can break off and travel to your heart or lungs. Turns out they couldn’t put in a filter for me, because I have an unusual vein network that meant a filter wouldn’t work. Most people have a femoral artery in each leg. In your torso area, the two veins join up and travel up until becoming the vena cava in your heart. Mine never joined up. One of them went up to my heart, but the other won just kind of wandered around the right side of my body until it trailed off into capillaries. I was a celebrity, since the medical staff with over 300 years of combined experience had never seen anything like it before. I always thought I was weird, but now I had medical evidence.
Remember when Serena Williams had to miss months of tennis? She was recovering from a clot in her lung, known as a pulmonary embolism. Even an elite athlete like her was completely wiped out and had to cut back for a long period of time. So between the recovery time and MS fatigue, I had practically no energy for months. My weak left leg became even weaker after housing such a huge clot.
To me, living with MS now means I’ve got a leg brace (ankle foot orthotic) and use a rolling walker when I’m traveling even small distances. Even though I fought getting a handicapped placard for years, I appreciate having it now. The permit is especially important this year since my boys are in two different schools with two different schedules. I’m spending lots of time in carpool lanes.
Just because I’ve got some of the “obvious” symptoms doesn’t make me immune to the invisible ones, like fatigue.
The only thing predictable about MS is that it’s not predictable. Hope you’re a good juggler.