Multiple Sclerosis Basics III: Your Guide to Living With It
Multiple sclerosis, or MS for short, is a disease with both good and bad news. It appears rare in Asia: between 0 and 20 per 100,000. There is no cure, but the life expectancy for most cases is positive – about 7 years less than someone who doesn’t have MS. However, if you suffer from multiple sclerosis, you may have symptoms that can drastically affect your quality of life. Most patients and their loved ones do not know where to begin.
We have looked at the types, causes and symptoms of MS in the 1st part of this 3-part series on MS. We have also discussed the diagnosis and treatment options available for MS in the 2nd part. Continue reading to find out how to manage multiple sclerosis, and deal with symptoms like MS-related tiredness to live a good life.
Recap: What is multiple sclerosis?
As mentioned in the 1st part of the series, MS is a disease of the central nervous system (CNS) which disrupts information flow within your brain and body. MS occurs due to the disorder of the immune system, much like other immune system mediated conditions such as celiac disease. The immune system attacks the protective layer, called the myelin, of the nerves. It involves neurologic changes that affect your ability to see, walk, and control your bladder and bowel.
This disease affects people in different ways. There are generally four courses: clinically isolated syndrome, relapsing-remitting MS, primary progressive MS, secondary progressive MS.
What should be your first steps?
The loss of control may bring on fear, anxiety, sadness and anger over being diagnosed with a chronic illness. The first thing you should do is to educate yourself about your symptoms and treatment options, as knowledge will give you greater security and assurance. Stress management is critical.
Ask your healthcare team about the prognosis for your disease, what tests you need to take, how often, and what type of doctor to call. It’s also essential to establish realistic life goals and expectations.
Treating yourself well
Comprehensive multiple sclerosis care is not just about medication. According to research, a healthy diet, exercise, not smoking, continued preventative care, and symptom management can all have a positive impact on a person’s MS progression and lifespan.
MS experts recommend that patients follow a heart-healthy, high fibre and low-fat diet, as high blood pressure and cardiovascular disease may be associated with MS worsening.
Rehabilitation specialists can provide education and strategies designed to promote your health, wellness, mobility, and mental activity so that you can function optimally at home and work. The range of rehabilitation activities includes physical therapy, occupational therapy, vocational rehabilitation, speech-language pathology, and cognitive rehabilitation.
Exercise offers many benefits for multiple sclerosis patients. Aerobic exercise reduces fatigue and improves bladder and bowel function, strength, and mood. Stretching exercises increase mobility and reduce stiffness. A physical therapist can recommend an exercise plan to fit your strengths.
Working with your doctor to manage multiple sclerosis
It is essential to be an informed partner in making treatment decisions with your doctor. Multiple sclerosis is a chronic condition that requires continuous treatment and monitoring, so do find out about the expertise of the healthcare professionals you will work with. Your healthcare team may consist of a primary care provider and other MS specialists.
Seeking a second opinion may be valuable when making difficult decisions on treatments. Find out if there are any opportunities to participate in multiple sclerosis research or clinical trials. It is good to bring along a friend or family member to act as a backup ear.
Keep a journal of all your questions, symptoms and concerns, and prioritise the most troublesome ones at the next visit. If your healthcare provider suggests treatments or medical tests, enquire about the purpose, results, side effects, costs, frequency, dosage, benefits, delivery mode, and if any alternatives are available.
It’s helpful to have a medication tracking book to review your medications, with details such as drug category, duration of treatment, amount and frequency of dosage, and rationale for consumption. If you are unfamiliar with any medical terms, make sure you get a thorough explanation.
Disclosing your condition in the workplace can affect your job security, employment options, and career path. Before disclosing your MS, learn about your rights in the country you live in, and think carefully through the pros and cons of sharing this personal information. You have a legal right to disclose your disability to your employer and to ask for reasonable accommodations.
Look for a company that values diversity. Maximise your potential at work by finding ways to manage MS symptoms like fatigue or a disability that affects activity. One way is to explore assistive technology options, such as computer aids, mobility devices, and so on.
When disclosing a disability, be specific, brief and non-apologetic. Explain your symptoms and how they may cause functional limitations, and request appropriate accommodations. Although requesting accommodations is a collaborative process, the majority of the responsibility lies on the employee.
Identify your knowledge, skills, abilities, and personal characteristics. Evaluate the impact of the symptoms on your overall competencies. Taking the time to do this helps you determine what options to consider. Expand your contacts by using online networking platforms, and look for potential mentors who can give relevant advice.
Maintaining healthy relationships in multiple sclerosis
Disclosure decisions are important – when, how, and should you disclose your diagnosis to your family and friends? Telling the people closest to you can benefit both you and them. You may feel that quitting your job, withdrawing from social activities or making significant relationship changes will help you, but they will only result in an inability to manage your symptoms.
Multiple sclerosis does not affect fertility, so women can still get pregnant. However, there may be an increased risk of MS relapse after in-vitro fertilisation. Hence, you need to discuss your pregnancy plans with your doctor so that he can review your treatment options. Some of your MS symptoms may feel worse during pregnancy, like fatigue, bladder symptoms, or balance and mobility problems.
Some studies suggest that postpartum depression is more common in parents who have multiple sclerosis. Talk to your maternity provider if you notice mood changes during pregnancy or after delivery.
It is natural to protect your children by hiding painful issues, but open and honest communication is valuable and vital. Finding comfortable ways to talk about MS can help you and your children adapt to life with MS.
For family, friends and loved ones
Your support partners are essential – a spouse or partner, family member or friend who provides emotional support, assistance, and care. Have a thorough assessment of your needs – medical, personal care, psychological, homemaking, and companionship. This helps you determine if you need further resource options, such as hiring a nurse or housekeeper.
For caregivers, it’s crucial not to burn out in the process of caring for a loved one with MS. Join local caregiver advocacy organisations, self-help groups or self-care groups where you can connect with other caregivers for emotional support. If need be, mental health counselling may be an excellent option to ensure mental resilience.
Hopefully, this article has provided you with some ideas on how to best manage your multiple sclerosis journey. It is possible to lead a meaningful life even with multiple sclerosis.
Article is written in conjunction with World Multiple Sclerosis Day 2021.
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