Once I was fully awake this morning and rolled over to see my suitcase opened wide on the bedroom floor, I was contemplating how living with chronic disease may be like living within the confines of a suitcase while on vacation.
Currently, I’m on the road and visiting family during the holidays, sleeping in my childhood bedroom, while living out of a suitcase. Actually two suitcases, two backpacks, a purse, and a small roller bag between my husband and myself. We also have two iPads and a computer, but no internet access other than through our cell phones or the local Starbucks. Needless to say, we are becoming well-caffeinated while on the road.
When I first opened our bags after we arrived, everything was neatly folded and rolled up into perfect flat squares and uniform cylinders. It was easy to know exactly where everything was located as I was the one who packed our bags. But as soon as we began to pull out individual items to choose between the limited selection of clothing we brought, organization and uniformity dissolved.
Living with multiple sclerosis, or any other unpredictable chronic disease, can feel as though the neat pieces of life quickly become disorganized and disheveled. Symptoms can unexpectedly emerge and demand your attention. A relapse may threaten to derail your activities and send you looking for alternative solutions to situations which arise. Your neat life becomes a temporary mess.
On day four of our holiday adventure, the suitcase on the bedroom floor has become a mixture of folded organization and rifled through belongings. But for the most part, we can still find what we want although it may not be where we thought it had been. We haven’t yet reached the point where we’re asking each other, “Honey, have you seen [insert description of desired item]? I can’t find it. It was right here yesterday, I thought.”
In other words, we are still able to function on our own, taking care of needs independent from each other. I predict that in another day or two, we will come to the point where we need each other’s help to figure out what the heck the other has done with our stuff. As we are beginning to relax and settle in even more, things are becoming scattered throughout the house. Fortunately, my dad is unfazed by a little temporary mess.
During MS relapses of the past, I know that it seems like I can keep things under control for a period of time, but then it becomes evident that my false semblance of control has dissolved into a figurative disorganized pile for which I simply need help to handle. Knowing when it is appropriate to ask for help can be challenging, especially if you are fiercely independent and strong willed like I am.
Realizing that you need assistance can make you grumpy, perhaps blaming others around you for your predicament - “What did you do with my shirt? It was right here earlier!” I know that it does me.
When living with MS, it doesn’t take too long before you realize that life will no longer be perfectly organized and folded up into neat little piles. It becomes messy. But just like at the end of a vacation, you must collect yourself, begin to gather your belongings, and pack things up for the return trip home.
At the end of each relapse, it may be necessary to reevaluate what surprises MS has left with you. Will new symptoms stick around a little while longer as you are recuperating from the worst of the attack? Will you feel confident that you can pack away the familiar symptoms, or temporary dysfunction, until your next adventure?
Do you need to make sure that you mentally pack your “relapse tool kit” on the top of your suitcase so that it is handy the next time you need it so you don’t need to dig too deep to retrieve it or make a huge mess in the process?
For the remaining days during our vacation, I’ll keep my “toolkit” neatly packed away in the corner of our suitcase. I don’t think that we’ll need it, but I brought it along just in case. I suppose that’s the old girl scout in me - always be prepared for the unexpected.
Now if only I could find those extra socks I packed, the brown ones with the gray stripes that look good with my gray pants. I’ll have to ask Rob if he’s seen them. Maybe I rolled them up and put them in his shoes instead of my own.
“Hey, Rob, I’ve got a question. Do you know where my socks have got to?”
Published On: December 21, 2014