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Living With MS: Finding a New Normal

Updated on June 01, 2017

Article written by
Alison Channon

You can live a fulfilling life with multiple sclerosis (MS). The prospect of living with MS may seem daunting when you’re first diagnosed, but in time you can find ways to support your wellness and adjust to your new normal.

Give yourself time to accept MS

It’s common to face a range of emotions after being diagnosed with multiple sclerosis, or when grappling with a change in the course of the disease. You may find yourself feeling shocked, angry, guilty, or relieved to finally have answers that explain your symptoms. Whatever you’re feeling, it’s valid. Taking the time to experience all of your emotions about MS, rather than burying them, is important for your mental, emotional, and physical well-being.

One MyMSTeam member advised, “I found it was a process of grieving. I worked through my anger and moved on. It takes one’s own time to accept and adjust to MS. Everyone is different in their acceptance, so try not to compare yourself unfairly.”

Adjusting to your diagnosis may not be a linear process. Because of the progressive and unpredictable nature of MS, you may find yourself going through the process again as you come to terms with new symptoms or a new disability. One MyMSTeam member shared, “I’m finding myself now having to use a cane after this last relapse and honestly, adjusting to that is harder than I thought it would be.”

Seeking support from loved ones, support groups, your medical team, a mental health provider, and members on MyMSTeam can help you cope with new MS symptoms and find ways to live your best life with MS.

Below are some additional resources that may be helpful as you adjust to your new normal:

Maintain a healthy lifestyle with MS

Adopting healthy lifestyle behaviors like exercising and eating well are important for everyone, but these habits can be even more helpful for maintaining your well-being when you have MS.

Exercise can contribute to your quality of life with MS by reducing fatigue and spasticity and improving flexibility and balance. Exercise can also help reduce anger or depression. Eating a healthy diet can help prevent or treat other health conditions like high blood pressure or high cholesterol that commonly occur among people with MS. While no diet has been definitively proven to treat MS, there is evidence that eating a healthy, balanced diet can help mitigate MS symptoms.
MyMSTeam members agree that staying physically active and eating a healthy diet are key to living well with MS. “I have no idea whether exercise will reduce further exacerbations,” one member commented. “But keeping moving always helps with well-being and feeling like you have a leg up on this disease.”
Another member added, “I think it’s important to eat healthy to give your body the best head start that we are able to.”
While exercise can greatly contribute to quality of life when living with MS, it can also be a reminder of the physical changes MS has caused. “I just started working out again last night after being diagnosed with multiple sclerosis,” a MyMSTeam member wrote. “I used to run half marathons, but last night after being on a stationary bike for only 10 minutes I was dripping with sweat. It's just so hard. It’s like you're starting your life over.”
Members advise each other to adapt their exercise routines to their MS symptoms. “You have to really listen to your body. It’s the boss now!” one member wrote. Another added, “I used to regularly do 90 minutes at the gym but have needed to adjust post diagnosis. Now I swap hours on the elliptical for an hour walk, and focus on strength training.”
MyMSTeam members also encourage each other to find the eating plan that works best for them. “It is all about finding what works best for you, ultimately,” one member wrote to another asking about nutrition. “Many people have found success through changing their diet. I am one of those people.”

Manage MS and related health conditions

Living well with MS sometimes also means managing other health conditions. A 2015 study from the Multiple Sclerosis Journal found that depression, anxiety, high blood pressure, high cholesterol, and lung disease were the most prevalent conditions among people with MS.

Managing MS treatment and other health conditions can be challenging, but you’re not alone. Many members of MyMSTeam struggle with the time commitment and frustration of seeing several health professionals to treat MS, other health conditions, and to manage general health and wellness. One member wrote, “Just came from my general practitioner. Explained how bad I was feeling. She increased my antidepressant and told me to see a psychiatrist. I've been avoiding this as the last thing I want to do is see another doctor. 😪”
While juggling multiple appointments can be difficult, prioritizing your care is important for living well with MS. MyMSTeam members offer the following advice for coordinating with several health care providers and dealing with health issues aside from multiple sclerosis.
  • Speak up: One member encouraged, “Always, always be your own advocate because no one will do it for you!” Another member reminded others that they can make a change if needed: “If you don’t like your specialist, see a different one. Don’t wait. It’s your life. 🦋”
  • Develop a health care team: Coordination among your health professionals can help ensure you get the care you need to feel your best. One member shared, “I had a neurologist appointment today, cried through a lot of it. She’s going to call and confer with my psychiatrist. I think that’s a good thing.”
  • Leverage all of your resources: A physician on MyMSTeam recommended that members speak with practice office managers about administrative difficulties. “Ask to speak to the office manager. The office manager should take care of it, not only bringing it to the attention of your doctor but also hopefully correcting whatever system the office has that leads to the problem in the first place.”
You can read about more tips for managing multiple health conditions in Are You Living With More Than MS?

Find Positive Coping Mechanisms

For some people, the secret to wellness while living with multiple sclerosis is finding productive coping mechanisms to handle the changes MS can cause.

A study of 107 Australians with MS evaluated the relationship between coping mechanisms and quality of life measures like stress frequency and depression. The research found that positive coping strategies were associated with lower levels of stress and depression and greater overall quality of life. In contrast, negative coping mechanisms like denial were associated with increased likelihood of severe stress. Some of the positive coping mechanisms studied include:
  • Growth behaviors like focusing on what can be learned from MS or identifying something positive about living with MS.
  • Acceptance behaviors like learning to live with MS or accepting that MS cannot be changed.
  • Outreach behaviors like connecting with other people with MS or seeking advice or support from friends, family, or professional counselors.
Members of MyMSTeam share coping strategies that align with those studied. Here are some ways members on MyMSTeam cope with MS symptoms and find hope in the face of a challenging illness:
  • “I walk as much as possible and I look at life as a blessing that I can still move and be around my family and granddaughter!”
  • “Adjusting my life and listening to my body and respecting how my body feels is the most important thing to do for oneself.”
  • “I was diagnosed at age 14 and now am 48. I just take life one day at a time and do what I feel I can do on the days I'm feeling good.”
  • “It's ok to get bummed out every now and then, it's normal. But have hope and faith that when that happens, something will take it away. It could be the littlest thing, like a beautiful sky, a song, a fond memory, or looking at the things you still have and not looking at the things you have lost.”
  • “Sometimes I get angry when all I hear is ‘think positive thoughts.’ All I can offer during your difficult time is be soft with yourself.”
Learn more about Wellness and MS. Healthy eating, exercising, and learning about related conditions can also help improve well-being in people with MS.
On MyMSTeam, the social network and online support group for those living with multiple sclerosis, members talk about a range of personal experiences. Finding a new normal with MS is a frequently discussed topic.
Here are a couple of question-and-answer threads about living with MS:
Here are a couple of conversations about living with MS:
How have you adjusted to living with multiple sclerosis? What advice would you offer to people newly diagnosed with MS? Share your experiences in the comments below or on MyMSTeam.
References
  1. Knowledge Is Power – National Multiple Sclerosis Society
  2. Coping With Change - National Multiple Sclerosis Society
  3. Family Matters - National Multiple Sclerosis Society
  4. What Happens After Diagnosis? - MS Trust
  5. Exercise prescription for patients with multiple sclerosis; potential benefits and practical recommendations – BMC Neurology
  6. Multiple Sclerosis and Exercise – International Journal of MS Care
  7. Food for Thought: MS and Nutrition – National Multiple Sclerosis Society
  8. A systematic review of the incidence and prevalence of comorbidity in multiple sclerosis: Overview – Multiple Sclerosis Journal
  9. Developing a Healthcare Team – National Multiple Sclerosis Society
  10. Target Coping Strategies for Interventions Aimed at Maximizing Psychosocial Adjustment in People with Multiple Sclerosis – International Journal of MS Care

Alison has nearly a decade of experience writing about chronic health conditions, mental health, and women's health. Learn more about her here.

A MyMSTeam Member said:

Wow I like to bowl myself, but until I get my left hip replaced, bowling is kind of out of the question. Are you on a league?
Love and hugs Cindy

posted 15 days ago

hug

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