MS: No Exemption From Life and Responsibilities
Wow! In looking back at my past articles, it appears that I've been absent for about a year. How the heck did THAT happen?
It's not like my MS disappeared. On the contrary, it's still here. My MS didn’t suddenly get so bad that I couldn’t go online. Actually, it’s doing okay and remains stable. But, I did get busy taking care of business for other people in my life, and that took up most of my time and energy.
Not alone, but it sure feels like it!
On top of living with multiple sclerosis and rheumatoid arthritis, I am a family caregiver.
Nobody prepares you to be a caregiver. There is no training manual or courses you can take in college, at least not in the music department. Nobody really tells you what it's going to be like to care for parents as they age and experience unexpected twists and turns in their own lives.
Caregivers need support
Perhaps there should be a 12-step support program designed just for caregivers. "Hi, my name is Lisa and I'm an unpaid family caregiver. I'm here because caregiving has taken over my life and I acknowledge that I need to find me again."
Attending a meeting for family caregivers
Actually, I did attend one meeting for family members held at the assisted living facility in which my mother-in-law lives. It was simultaneously encouraging and discouraging. My husband and I were the youngest people in the room (other than the social worker who led the meting) when we convened in the facility library. As we introduced ourselves and summarized our story, other attendees gave knowing nods and affirmative glances.
Finally, we were not alone in our experiences. Others had been in our shoes and understood. Although I cried a lot out of pent-up frustrations and exhaustion, one thing that I took away from the meeting was that in the scheme of things, our situation wasn’t nearly as bad as it could be.
Connecting with other people
This meeting reminded me of how people in the MS community are there for each other. Whether you are newly diagnosed or have been living with MS for many years, support and camaraderie come with connecting with other people.
Ready or not, here you go!
Two and a half years ago, my mother-in-law had knee replacement surgery. Her early recovery was going well as Rob and I basically took turns living with her to attend to her daily needs and safety at home. In hindsight, she should have stayed in the rehabilitation facility for longer than 7 days after the original surgery. But she was anxious to get back home and for life to go back to normal.
Unfortunately, my mother-in-law had an accident at home while Rob and I were away briefly that sent her back to the hospital for emergency surgery. Subsequently, she developed a serious infection, ended up having ten surgeries over the course of four months, and was transferred back and forth between the hospital and rehabilitation facility during that time. She never returned home, but did keep her leg.
Taking care of her home and belongings
In addition to taking care of her physical and emotional needs, my husband and I had to take care of her home and belongings. It took well over a year just to sort through all of the paper, official documents, personal belongings, and household goods in my mother-in-law's house. While we disposed of a lot of material — I actually broke a paper shredder — we still have a lot of items that got put into storage bins to be sorted later. Those bins are either in my basement now or in a commercial storage unit.
Eventually, the house was organized and cleared, repairs and updates completed, and put up for sale. I even refurbished the 37-year old wood stove which turned out beautifully. Twenty-seven months after the original knee replacement surgery, my mother-in-law's house was sold to a lovely couple.
Climbing out of the muck
It’s easy to become totally consumed with family responsibilities when there is a huge job to be done. During the past 2+ years, it was really difficult to focus on my own needs. One way I did stay in touch with myself was through physical activity.
I'm definitely not a huge exercise buff, but I have learned to enjoy cycling. There’s something exhilarating about rushing down the other side of a hill you’ve just worked really hard to climb. By the way, climbing is climbing no matter if you’re pedaling your bike in its lowest gears, if you’re walking your bike up the hill, or if you are working hard to sell a house. All of it is hard work.
But I wanted to share a victory I experienced this summer. I did something special with cycling that I had wanted to do for a while. It was a huge accomplishment for me. At the BikeMS Chesapeake Challenge ride, I rode more miles in one day than the number of years in my age. That was super cool!
Focus on you
While your challenge may not be family caregiving like mine has been, it is important to stay in touch with yourself while you are stuck in the muck of life. What do you do to take care of yourself when life seems to get in your way? When MS gets in the way? Or when you seem to lose your way?
Please share your favorite self-affirming activities. I’d love to hear how you cope and refocus on your own needs.
Thanks for reading and for sharing!
Do you ever experience MS bloat?