On two recent long weekends in a row of traveling with my daughter, I forgot about her need for rest and scheduled bathroom breaks. She has always had incontinence problems at night, but when we are on the go more than usual, this also presents during the daytime as well. Her difficulty with focusing on more than one thing at a time makes it hard for her to realize her need to pay attention to her body, especially when she would much rather be involved with activities her family and friends are participating in. It is also important for me to remember how long she has been on her feet and if she has been a lot more active than her usual schedule. I have found on too many occasions that if I am not careful in making sure she gets enough time sitting down, she will develop painful muscle spasms and not be able to stand or even sit alone. I also have to make a much stronger mental note to remind myself about giving her her nighttime medications. When I am at home, there is a routine in place for taking her meds. While on vacation and being on a different schedule, it can be easy to forget to administer her nightly doses. I could go on...but the point is that her MS is always there, no matter where she is. There is no escaping the reality of MS. But with some helpful tips to remind you to watch over your MS patient during your getaway, we all can get a small break from our lives with MS.
A little bit about me...I am a MS Caregiver for my daughter, who has had MS symptoms since she was 10 years old. Pediatric MS was rarely recognized in 1999 when we began our MS Journey. 14 years later, I am passionate about finding ways for other families to connect with each other as we are forced to confront this chronic illness. I find a lot of support thanks to the internet and a Facebook group Pediatric MS Alliance. From this group, I have met many families from around the world that are also feeling isolated. From this Facebook group, we have formed the website www.pediatricms.org and are in the process of obtaining nonprofit status, with the goal of connecting families in person as well as informing families of activities and information designed for the pediatric MS patient.