One of the biggest things Jennifer and I fear with us both living with Multiple Sclerosis was recently realized.
I got out of bed and couldn’t stand up to walk.
Me, Jennifer’s primary caregiver who is the physical force behind her every transfer in and out of her power wheelchair, lost control of my legs, collapsed into the wall and crashed down to my knees. It wasn’t good.
My getting to the bathroom was simultaneously the first and least of my concerns. Sure, I had to go, but more important to me: who was going to help Jennifer when she needed to go?
We’ve gotten through our more than 13 years of marriage because I can help Jennifer with everything she needs.
And just like that, I had absolutely nothing.
It turns out that more than MS was attacking my body. After feeling some sort of sickness coming on New Year’s Eve, it was raging through my body one week later in what an ER doctor soon diagnosed as “viral bronchitis.”
While my MS has stayed somewhat under control since being diagnosed nearly 20 years ago, I never have effectively managed any sickness on top of the MS. Every cold, infection, flu, fever and, now, viral bronchitis instantly amplifies every MS symptom I have.
It’s as though I’ve spent years training my MS to behave, mind its manners and be kind to me. But all it takes is a rambunctious illness to stop by, kind of like a spoiled cousin dropping in for a visit, to rile up my MS and show it the power it has over me.
The numbness in my limbs and chest and the overwhelming feelings of fatigue are instantly out of control, and I lose my abilities to function properly.
Jennifer and I knew that this sickness wasn’t going to quickly go away. So our concern not only was how could I make it through, but what about her?
Fortunately, she has her caregiver Marcus who is available to help during the weekdays, but come evenings and weekends, our care plan wasn’t quite as clear. What to do …
You know how we often talk about the importance of having a strong caregiving team of friends and family and health care professionals? This is where we count our blessings that Jennifer’s mom, Pam, and brother, Steve, were available to do all they could to help us.
They drove the 101.3 miles to our house (I know this exact distance from the years I drove to see Jennifer while we were dating), and they stayed for nearly a week to help with transferring Jennifer, making meals, and taking care of me. All the while they kept checking back with her dad to make sure he was doing fine. We truly could never thank them enough for all they did and continue to do for us.
This kind of sickness isn’t anything you ever can anticipate, but it helps to have plans to know how you’ll respond. We hadn’t had to deal with me getting knocked out of commission in more than three years. After going through it again, we are reminded of what works in our plan and where we need to make adjustments to ensure the best possible care for everyone.
I guess this is another harsh reality of living with MS: Having a chronic disease doesn’t make you exempt from other illnesses. We can spend our time focusing on fighting and treating the MS, but it’s important to keep our eyes open to prepare for related “worst-case” scenarios.
We know now that first on this list is planning for what happens when the MS caregiver gets sick.