One of the most difficult things about living with MS is dealing with the unexpected setbacks. Whether that be a relapse or a bad day in general, MS always seems to rear its ugly head at the most inopportune times. Not that there is ever a convenient time to have a relapse, but, without fail, mine always seem to threaten vacations, holidays, plans with friends, and deadlines at work. Relapses and bad days are unpredictable, but preparing for them helps me get through tough times.
I have learned a lot about myself since being diagnosed with MS, and it turns out that I am not good at accepting help. I am thankful to have people in my life that are ready and willing to come to my aid, but I have a bad habit of refusing their assistance. Being helped just makes me feel, well, helpless.
Since I know that I am bad at asking for, and accepting, help when I actually need it, I decided to prepare for some of my common “need help” scenarios. I now have a list of issues I expect to face during a relapse, and who I can ask to help with each one. That way, when someone asks me what they can do to help, I have a response at the ready. For instance, if a neighbor offers to lend a hand, I might ask them to grab me one or two items the next time they go to the grocery store. If a friend wants to cheer me up, I’ll ask them if they know any good books or movies to keep my mind off of things for a bit.
I also try to anticipate the more complex issues I expect to face during a relapse, and which of my family and friends I can ask to help with each one. For example, I have designated a couple of friends and family members to help drive me to appointments and testing, and help me run errands. I have talked to each one of the people on my list already, so that when the time comes, I will feel less guilty about asking for their help.
Having a few survival supplies at the ready also helps to put my mind at ease. My family has a huge appetite, and I live in an area without any restaurants that deliver food, so it is crucial to keep at least a week's worth of easy meals in the pantry and freezer should I not be able to grocery shop or make it out to a restaurant. Oftentimes I’ll do this by simply making a double portion of meals every now and then, so I can freeze half and save it for a day when I’m feeling fatigued. I also prepare for the times that I need IV steroids by keeping some medications on hand that help me deal with the side effects like GI upset and insomnia. This saves me from cooking, running to the pharmacy, and grocery shopping on days where I am guaranteed to have very little energy.
When it comes down to it, my support system is the key to coping with setbacks, but I know that not everyone has supportive, helpful loved ones nearby. If you don’t feel that you have enough support around you, try connecting with your local MS Society chapter or making friends within the MS community. Often some of the best support I get is from other people with MS, because we understand each other like nobody else can.
Planning for the unexpected is obviously difficult, and each relapse has caused issues that I had not anticipated. But having a thought-out plan that at least covers my basic needs helps make me feel a little bit more assured that I can make it through the rough days.