Authors
Roz Kalb , Psychologist
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1 Dec 2023 | ~6:50 Engagement Time
Life with MS – whether you’re a person who has the disease or a care partner for a loved one with MS – throws a lot of curve balls, including unpredictable symptoms, the potential for increasing disability, and possible role changes at home and work. At the same time, weathering challenges and finding strategies and solutions that work for you – in other words, finding your new normal – can strengthen your problem-solving skills and increase your resilience in the face of future changes or obstacles.
Let’s look at some helpful strategies for building and maintaining your new normal – physically, emotionally, and socially:
Working with your MS care team to slow the MS disease course and manage your symptoms is essential for keeping you active, safe, and feeling your best. Keeping up with your preventive health care – recommended vaccines and health screening exams for your demographic and age group – reduces the risk of other health conditions that can speed MS progression and compromise your overall health. Care partners who focus on their loved one’s wellbeing while neglecting their own may need to be reminded how important it is for them to attend to their self-care as well.
Fatigue, impaired balance, loss of sensation in your legs and feet, weakness, spasticity, and hurried trips to the bathroom can all increase a person’s fall risk. A physical therapist can recommend exercises to improve your balance and strength, as well as mobility aids to help you maintain your balance and safety in daily activities. Physical balance is important regardless of your ability level, whether you’re out and about, making your way to the bathroom, or transferring from chair to bed or toilet.
Environmental factors also impact your safety. An occupational therapist can help you modify your space at home and work to optimize your safety. Examples of safety modifications include removing scatter rugs, adding grab bars in bathrooms and a second banister on stairways, and putting in nightlights in your bedroom and bathroom.
Maintaining balance in your moods can also be challenging when living with MS. While grief is a healthy, normal response to change and loss, depression and anxiety are part of the MS disease process for many people. Care partners can also experience significant mood changes of their own. The fallout from these mood changes, along with anger, resentment, guilt, or garden-variety worry, can impact communication and relationships, self-care, sleep, productivity, problem-solving abilities, and the motivation people need to keep moving forward. Mental health professionals can help you sort out your moods and restore your emotional balance.
If and when disability increases, one person in a relationship may be less able to carry out their usual tasks and responsibilities while the other person begins to take on more and more. A partnership that has relied on balanced give-and-take, with each person able to give and receive comfortably, may lose that equilibrium. The person with MS may worry about not holding up their end of the bargain while the care partner feels overwhelmed and exhausted. Regaining a sense of balance, and finding the new normal in your relationship, involves adapting the ways both partners give and receives care and support.
Whether it’s fatigue, accessibility issues, or other people seeming to back away, your best option is to take the initiative to get your social life back on track. Invite people you like to join you at your home for a pot luck or a pizza; suggest a new way to do an activity you’ve shared in the past or a new activity you’d like to try with them; explain how a Plan B can work for all of you if your symptoms interfere with a plan. And be sure to suggest places that you know are fully accessible and comfortable for you. While some people may keep their distance, others will appreciate your outreach.
Dating sites have yielded many safe, enjoyable, and lasting relationships, so be adventurous and try them out.
Providing help and support to another person is often the best way to help yourself as well. A friendly card, an offer of assistance, a little gift, a simple “How are your doing?” is a proven way to lift your own spirits and increase your feelings of confidence and self-worth. Some people may just need you to listen, while others may want advice or a hug – but your offer to support them will help you both.
TAKE CHARGE: Newly Diagnosed
Join this one-of-a-kind program to learn, set goals, and create healthy changes for your life. Plus, meet other people living with MS who "get it" - all in a positive, safe, at-home environment. The TAKE CHARGE Program is a 2-day program for people living with MS and their care partners to connect, receive coaching, and work together to find solutions to build a brighter future.