Who doesn’t look forward to an escape from reality, especially when planning a vacation? So many plans are made in anticipation of going on vacation, trying to do as much as possible in the time you have available. Unfortunately, MS never takes a vacation. It can be a challenge to remember the needs of your MS patient as you are planning your days full of activities. A change in the daily routine of an MS patient can bring back even the most minor of symptoms. 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. -Laurie 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. Although I admit I am the first person who says “Do as I say, and not what I do”, it is very important to take care of yourself as you are taking care of your loved one. I know it is against your instincts to focus on yourself when you feel someone needs you more, but it is important to do so. The caregiver has a very important role in caring for the patient. A caregiver can have a varying amount of duties demanded upon them depending on the needs of the patient. These demands include not only physical actions, but also the mental requirements in keeping the patient from depression and apathy. If the caregiver is feeling imposed on, taken for granted and not appreciated, it will reflect in the care of the patient. There are simple ways to take care of yourself without sacrificing the needs of the patient. Physical activity is very beneficial, even if it is just a walk around your neighborhood. I try to get to the gym 4-5 times a week to use the treadmill. Even though I would rather just sit and relax, I always feel better after an hour on the treadmill. More enjoyable activities are also helpful, such as a night out with friends, my weekly bowling league and other ways to interact with other people. We joke that our bowling league is really a social event where we happen to bowl at the same time. Other pampering dates, such as manicures, facials, massages, should be scheduled into your routine on a regular basis. The biggest obstacle in taking care of the caregiver is to overcome the guilt that always comes about when you take time for yourself. The way I ignore this feeling is to remind myself that it is important for the caregiver to feel at peace with their role in their patient’s care. The caregiver will not be doing their job if they are harboring resentment towards their loved one for something that the loved one has no control over. This is not to say we don’t have our times of utter frustration, which we deserve as well as the patient does. But we learn to move past those feelings and take care of ourselves as well as our loved ones. --Laurie A little bit about Laurie...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. |
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