Clinical psychologist Dr Rosalind Kalb, Director of the National Multiple Sclerosis Society’s Professional Resource Centre in the USA, advises patients to determine which aspects of MS they can overcome, instead of “trying to win the war”. She says breaking the illness down into individual challenges helps patients feel they are managing MS, not the other way around.In an NMSS booklet, Dorothy E. Northrop, the organisation’s Vice President of Research and Clinical Operations, explains that life planning entails “anticipating needs that may arise in future and planning for them”. This process covers various aspects such as physical health, family resources, health care, finances and potential long-term care needs.
Yet, life planning need not sound more alarming than it actually is. Northrop comments that most people routinely take out home and car insurance. They know and hope they will never need it, but if they do, at least they are prepared!
“For me, planning my schedule in advance and resting are not luxuries, but necessities,” says Susan*, 38, who has been living with MS for three years.
Here are six useful tips to plan your life with MS:
1. Take charge. Many people with MS have a sense of uncertainty. One coping mechanism is to control aspects of your life that ARE controllable. This includes important practical issues such as work, financial resources, medical cover, adapting your home and finding ways to make your life easier. Take some time to write down what is really important to you; then prioritise, eliminate and streamline activities in all aspects of your life.
2. Be realistic. Understand your body’s limitations by setting reasonable expectations and goals for the important areas of your life – work, family, parenting and home life. Get input from your partner and family members on new activities you can do together. Remember that MS symptoms may be more worrisome if you are stressed, overworked or fatigued, so adjust your daily schedule and activity levels to help you get back on track.
3. Be pro-active about your health. Make a point of keeping abreast of the many developments and effects of your illness. It’s also vital to co-operate with your medical team. During the 23rd meeting of the European Neurological Society (ENS) held in Barcelona in June this year, Prof Xavier Montalban of the MS Centre of Catalonia, Spain stressed that extensive involvement of patients is especially important with MS to increase compliance.
Being pro-active also means taking care of yourself – follow a healthy eating plan, get enough rest and do moderate exercise. Nowadays, physiotherapists like Sheila Schaffer who works at the Kernan Orthopaedics and Rehabilitation Hospital in Baltimore are encouraging patients to stay as active as possible. With new research showing that aerobic exercise that incorporates balance training is most effective, get a physiotherapist or fitness professional with MS experience to devise a special fitness programme focusing on your goals and symptoms.
4. Don’t be afraid to ask for help. As soon as you feel less able to cope, get help. Yes, it’s difficult if you’re accustomed to always being in control, but the sensible route is to ask your doctor to refer you to a physiotherapist, speech therapist or occupational therapist if your symptoms are making it difficult for you to do certain tasks. Dr Christopher Luzzio, Clinical Assistant Professor, Department of Neurology, University of Wisconsin at Madison School of Medicine and Public Health, also encourages patients to use comprehensive information resources offered by MS-dedicated websites and professional organisations like the NMSS.
5. Boost your mental wellbeing. The unpredictable aspect of MS may increase feelings of anxiety, stress or depression as people feel less in control of their lives. That’s why it’s vital not to neglect your mental wellbeing, as studies have found a link between stress and worsening MS symptoms. Individual counselling or psychotherapy enables you to discuss private concerns or sensitive issues with a professional. This way, you’ll be able to deal with the impact of MS on your life and relationships more effectively, improve your emotional wellbeing and regain more control over your life.
6. Reach out. A support group can be extremely empowering as you get the opportunity to connect and share with other MS patients in a safe, caring environment. Here you can learn new ways of confronting problems, get support from others, learn new information and increase your self-confidence by realising you’re not facing your illness alone. Another way to reach out is to start a blog where you write down your experiences and emotions. A blog is a powerful healing tool and can also help others in the same situation.