Finding Your New Normal for Living with Multiple Sclerosis

Understanding What Feels Normal with MS

Living with multiple sclerosis (MS) can make it difficult to define what a "normal" day looks like. The unpredictable symptoms and periodic setbacks of the disease often throw carefully laid plans out of whack. When your body and mind don't seem to be cooperating, it's easy to become discouraged.

But the truth is, there is no real normal - every person's MS journey is unique. Learning about the common challenges others face can provide some reassurance that you are not alone. Reframing your mindset around the ups and downs can also help you bounce back quicker after difficult periods.

The Rollercoaster of MS Symptoms

MS causes the immune system to attack the nerves in the brain and spinal cord, which disrupts communication between the brain and body. This can lead to diverse symptoms that vary greatly between individuals. For some, symptoms may come and go sporadically at first. For others, they may experience steady progression with few periods of remission. And some ping pong back and forth between relatively stable periods and acute flares of old and new symptoms.

Because nerves impact so many bodily functions, MS symptoms run the gamut from physical to mental. Common issues include fatigue, walking/balance/coordination problems, numbness, bladder dysfunction, visual disturbances, spasticity, weakness, cognitive dysfunction, pain, and depression.

Coping with Unpredictability

The uncertainty of how your symptoms will manifest day-to-day can feel like an endless rollercoaster ride. Some days you may bounce out of bed feeling clear-headed, energized, and capable. Other days, you struggle to get dressed or make breakfast without exhaustion setting in.

That lack of consistency can impact everything from your ability to commit to social engagements, household responsibilities, work projects, and personal health routines. After a serious MS flare, its common to feel defeated when simple tasks like cooking dinner or taking a walk suddenly become monumental efforts.

Redefining Normal as Fluid

To reduce frustration with the inevitable ups and downs of MS, it helps to reframe your concept of normalcy as fluid rather than fixed. Expecting every day to be the same only sets you up for disappointment. Instead, accepting normal as what feels right for any given moment can help you roll with the punches.

This means letting go of comparisons with life before your diagnosis, or even how capable you felt yesterday or last week. Avoid labeling days as good or bad based solely on how much you achieve while symptoms wax and wane. Be flexible and adapt your schedule and activity levels to however your mind and body are functioning each day.

Establishing Your Own Baseline

While MS normal may look different day-to-day, most people do discover a general ebb and flow of better days mixed with worse days after living with the condition for some time.

Paying close attention to your energy levels, specific symptoms, sleep patterns, and ability to handle stress can help you identify a personal baseline of wellness. This allows you to anticipate your capacity so you can plan and pace activities appropriately.

Tracking Patterns

Use a journal or symptom tracking app to record daily details, making note of:

• How rested you feel upon waking and during the day
• Your motivation and mood levels
• Bowel/bladder/sexual function
• Vision, speech, swallowing, balance, coordination issues
• Areas of numbness, tingling, pain, spasticity
• Cognitive glitches like brain fog

Over time, this data will reveal useful patterns about when certain symptoms arise so you can plan around them as much as possible.

Identifying Triggers

Tracking details also helps pinpoint potential triggers for flares like stress, poor sleep, heat exposure, pending menstrual cycles for women, and other active infections. You can then take steps to control triggers when feasible.

For example, if you note worsening fatigue whenever you have a busy week at work coupled with social engagements, you can consciously build in more downtime to recharge. Or if symptoms like vision changes worsen in heat, you can utilize cooling strategies to manage environmental temperature.

Scheduling Smart

As patterns emerge of when you tend to feel your best and have the most stamina for clear thinking and physical activity, structure your schedule accordingly.

Protect these peak times for essential priorities like work, household chores, exercise routines, medical appointments, and participation in hobbies that energize you mentally.

Conversely, anticipate and accept that late afternoons may become slow, brain-foggy hours where you need extra rest. Or that the day after a big social event, youll pay the price of more fatigue and may need to cancel plans to recover.

Finding Small Daily Wins

When MS gets you down, looking at the big picture can feel overwhelming and deflate your motivation. Better to chunk life into smaller pieces and celebrate mini accomplishments.

Focus on What You CAN Do

On high-symptom days when your stamina and capabilities shrink, avoid dwelling on activities that have become difficult or impossible. This will only trigger negative thought cycles that fuel depression.

Instead redirect your mental focus to what is still possible for you in the moment, even if that just means catching up on a favorite TV show, listening to an audiobook, completing a small craft project, or video chatting with a friend.

Get Creative with Adaptive Aids

Experiment with gadgets and aids that can help conserve your energy and restore independence with certain tasks.

Things like grab bars, shower seats, raised toilet seats, seat canes, button hooks, long-handled shoe horns, electric can openers etc. can enable you to safely self care even when coordination, strength and stamina lag.

Voice activated smart home devices, specialized keyboards, writing aids, audiobook apps, and other tools can also help you remain engaged in hobbies as abilities evolve.

Pat Yourself on the Back

At the end of each day, take a few minutes to mentally scan for any small feats worthy of self-praise. Things like:

• Got dressed without sitting down
• Walked the dog around the block
• Did 10 minutes of seated yoga stretches
• Handled a stressful phone call
• Made a healthy breakfast
• Played cards with my kids

Whatever your personal situation, finding some nugget of accomplishment and applauding yourself for it can boost motivation to keep trying.

Seeking Community Support

On the most difficult days when MS knocks you off your feet, take comfort in knowing you dont battle alone. Connecting with others who face the same struggles can ease the isolation so many feel when normal life gets disrupted.

Share Your Story

While every MS journey is unique, the solidarity of swapping stories with someone else traveling a parallel path can lighten the burden. Opening up helps both parties feel understood and less alone. And you may pick up some useful tips for coping with specific symptoms along the way.

Peer support networks like MS Society chapters and online patient communities like PatientsLikeMe provide welcoming forums to exchange knowledge within a culture that gets it. Knowing your challenges are familiar to many others makes them feel less intimidating.

Educate Family and Friends

Well-meaning relatives and friends often struggle to grasp why MS can transform someones abilities and confidence so radically from day-to-day. Educating them on the nature of the disease can clue them in on how best to support you.

Provide information to read about typical symptoms and encourage them to ask questions. Make clear how limitations with planning and scheduling are necessitated by unpredictable fluctuations in your energy, pain, cognitive function etc. - not through any fault or choice of your own.

Helping your support network better understand the moving target of MS normal empowers them to pick you up and problem solve on extra difficult periods rather than make you feel guilty.

Talk to Your Healthcare Team

Dont undervalue your doctors, nurses, home health aides, mental health counselors and rehab specialists as excellent resources during emotional frailties or downward spirals. They may be able to adjust treatment protocols or connect you with additional supportive therapies.

If feelings of defeat persist, discuss screening for clinical depression. Safe, effective treatment options for managing the mood disorder exist and can make day-to-day function feel less burdensome.

You dont have to pretend everything with MS is fine when its not. Voicing your struggles, fears and frustrations to your healthcare team gives them useful insight for keeping your care plan optimized as the disease progresses.

Learning to roll with the constant flux of MS allows you to minimize suffering over what you cant control. Arm yourself with the right knowledge, tools and support team so you can bounce back quicker from the bad days and better enjoy the good!

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.