Tips on Managing Family Life

Part of A Guide to Parenting with MS and How It Affects Your Family

Have you ever wondered how to manage family life when you (or someone you love) has MS? Well, I have MS and through the years of trial and error, I've learned a thing or two on how to help manage it. Here's my take. 

Multiple Sclerosis is a chronic condition that often causes chronic pain, fatigue, and sensory disruptions.  MS can make it difficult to fall and stay asleep, create memory problems, cause numbness in the hands, feet, arms, and legs. While not everyone living with MS experiences all these signs and symptoms, these are the most common.

While there is no cure for MS, there are a range of disease-modifying medications your doctor can prescribe for the disease progression and treatments for some of the symptoms.

My Tips for Managing Family Live with Multiple Sclerosis

  1. Learn about MS - Living with a chronic illness like MS can be difficult, but knowing more about the disease and what it may have in store can help you manage expectations, find strategies and work toward acceptance. 
    - If you don’t like your health care team, start there. Consider replacing members of your healthcare team that you are not happy with (link)
    - Speak to your health care providers to provide you with information for living with MS. 
    - Check out the National MS Society

  2. Plan for a range of emotions - MS can play havoc with your mind. As the disease progresses your ability to cope on a daily basis may shift.  The initial relief of finally getting a diagnosis can lead to stress or worry about what to expect. Plan for these emotions.  You may not be able to control them, but you can plan for strategies to cope with them. 
    When planning for your new emotional state, remember that studies found that some people with multiple sclerosis experience the pseudobulbar affect.  The pseudobulbar affect is sudden episodes of uncontrollable laughing and/or crying at inappropriate times.  The uncontrollable laughing and/or crying experienced by people with MS can be unrelated, or out of proportion, to their current mood. This can happen when MS lesions have occurred in the areas of the brain that control your emotions. 

  3. Consider joining a support group or seeing a therapist - You can find social networks on social media, and in some areas, there may be groups that meet up. (or did before the pandemic) Although finding a therapist is hard these days your care team may be able to find resources you hadn’t thought of. 
    If you are experiencing pseudobulbar affect remember that this is a physical disorder that results from a disturbance in how you express your emotions.  You may need to explain to your therapist that there is a difference between your reaction and your actual feelings themselves; they may incorrectly read into laughing or crying uncontrollably.  Although not a psychologist, I believe many people with MS are diagnosed with depression and other psychological disorders incorrectly.  Take stock of how you feel.  I have a post about attitude and MS (link) that might be interesting. 

  4. Pace Yourself - Fatigue is the most prominent symptom in a person who otherwise has minimal activity limitations. For the newly diagnosed you may have just a few symptoms.  You may look fine on the outside but are dealing with a range of sensory disturbances. It’s important to pace yourself and prioritize your day. Don’t be afraid of letting others down by declining invitations when you’re not feeling up to it. You don’t want to overdo it and regret it later.  MS is an "invisible illness" -- People may forget that you need to prioritize your responsibilities. When weighing activities, favors, or invitations consider if they will keep you from the rest, exercise, or relaxation you need to feel well. It's OK to simply say "no." And stick to it.

  5. Jot It Down -  About half of people with MS can have some cognitive problems. MS can impact your working memory, keep your phone or a pen and paper handy. For some, that means poor focus, slowed thinking, or fuzzy memory. Make to-do and even "to say" lists -- to help you remember topics you want to talk to your spouse or family about. Keep shopping lists, friends' names, and important phone numbers and addresses in a notebook or on a device to carry with you. If you can’t remember what you are supposed to remember it is sometimes hard to only use technology.  

  6. Communicate with Loved Ones - MS can make life stressful for your family members; when your family is stressed you will likely feel that stress. Stress increases symptoms.  See a pattern?
    Communication is essential even if they don’t understand what you’re going through. Tell loved ones what brings on your symptoms.  If you have noticed a distance in your relationship, put a reminder in your chosen place to find a time to chat.  It’s easy to forget what you had planned to say so use your favorite calendar to write notes about what you have noticed for the later conversation.  Never be afraid to ask for help from your family, friends, health care team or other MS community members. Even if they say no, it give you information about who is there for you and where to turn in times of stress or increased symptoms. 

  7. Take Some 'Me Time' Every Day - MS might seem to take away some of the fun in your life but it doesn’t have to zap all of the pleasure. Be sure to set time aside daily (yes, daily) to do something you enjoy. Doing things you love is key to staying positive at home.  For some, it might be meditation, for others a book, game, movie, or listening to music. Take part in a hobby you love like painting, playing music or knitting. Whatever you choose, try to find at least a little ‘me time’ each day. 

  8. Consider a Journal - Assess your feelings daily, write day-to-day events in a personal diary. Keeping track of events, activities, symptoms, and mood changes can help you take some mystery out of pseudo exacerbation activity. It may make you aware of when symptoms start and, over time, what may be triggering them. Then you can work to eliminate triggers or learn coping strategies to lessen their impact.

From learning about MS to journaling about your life with MS there are lots of things that you can do on a daily basis to minimize the trauma that comes from having a chronic illness.  Managing your disease and your family obligations won’t get easier, but if you are honest with yourself and those around you it can become more manageable.  While I can’t offer any advice on how to specifically cope with your MS, I can tell you that it is important to know what your emotions are related to your MS and why. You also should be building up your support system to help you through the tough times. This section of my blog will be devoted to helping parents struggling with MS get through the day-to-day struggles and learn how they can better look after their children while still meeting their own needs.

I hope you found this post helpful! If you have any questions for me about parenting with MS, please feel free to reach out on Facebook or contact me through Instagram @weeouse. For now, take care of yourself and be kind to those around you – your loved ones will appreciate it!