When managing one’s MS, there can be many factors and elements involved in the process. All such journeys are different, and each person’s experience with MS is very unique. This makes it difficult at times to compare and help navigate its course and impacts. Its unpredictable nature can cause challenges in finding ways to help manage symptoms and disease changes. But there are so many different types of support, treatments, and strategies in place nowadays. Experiences can be shaped and influenced greatly.
Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.
A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.
B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.
C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.
It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.
On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.
To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.
It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.
We’ve talked about different aspects of wellness here on the MS Conversations blog in the past, and this month as we’ve covered topics related to depression we also wanted to touch on factors of physical wellness too, because all of the elements of wellness can intertwine and are equally important. Living with a chronic illness like MS can make it difficult at times to have control over one’s physical health because of how unpredictable and unknowing the disease course can be. However, there are pieces of physical wellness that a person can try to maintain influence over, even though MS may have other plans in mind.
Daily habits and behaviors can have great influence over one’s physical health and can include things like diet, exercise and sleep practices. With a disease like MS that can affect physical body function, maintaining consistent sleep or exercise routines can be challenging at times. It’s in these cases where people may need to get a little creative and modify/adjust practices to make things work for them. Working with healthcare professionals on symptom management strategies can help with this. Applying good habits to daily routines may improve physical health needs, especially with sleep practices. And though at this time there is no one specific diet known to influence MS and they continue to research this, maintaining healthy eating habits and a well-balanced diet can have positive effects on one’s physical nutrition. Each person is unique and what works for one’s physical health may not for another, so it’s important to evaluate behaviors and choices that can apply to your situation and what your needs are.
Another part of this physical piece includes maintenance and follow-ups when it comes to one’s care. I don’t know anyone who necessarily “enjoys” going to the doctor or hospital, but it’s one of those things that has to be done sometimes. Making sure to see your doctor regularly, notifying them if you’re having an issue or experiencing changes in symptoms are all good habits to try to enforce when it comes to your health. It’s not always an enjoyable experience having to go to the doctor or having medical tests/procedures done, but it’s a way to ensure that you’re doing all you can to keep your care in check and to maintain control over this aspect of your health. There are even tools and resources to help keep communication flowing between you and your medical team for your physical care needs. Though physicality is merely one aspect of the entire wellness sphere, it remains a vital part that contributes to all of the other elements of wellness and to one’s overall care.
As if the whole year round doesn’t bring enough stress, with the holidays approaching and busy end of year happenings, stress can rear its ugly head two-fold during this time. Stress can have negative effects on anyone’s health, but especially for those living with a chronic illness like MS; this beast can cause additional challenges on other symptoms. That’s why it’s so important and crucial to try and reduce stress when you have any control over a situation and it’s possible to have influence over it. Now this isn’t always the case, because as we all know, life tends to be a tad unpredictable at times so control isn’t always a possibility. However, when you do encounter those moments to change things yourself, make it worthwhile and significant to your benefit. So how can you try to manage stress?
S– Stay flexible. When things occur that you can’t predict or plan for, the stress we place on ourselves as a result can have real consequences. So try to stay open to change; sometimes it may bring good results.
T– Talk to others about the stress you’re feeling. Opening up about what’s going on may reduce the inner stress you’re experiencing if you keep things bottled up inside.
R– Rest and relax when you’re able to. Your body is stronger at combating stress and illness when it receives the rest and care it requires.
E– Enjoy simple pleasures and special moments when you can. Life goes by so fast, so make sure to take in the joyous times and happy occasions to hold onto if and when stress surfaces again, it can aid in the fight.
S– Socially connect to others who may have had similar stressful experiences and challenges—it can help to learn some different ways to cope and to also know you’re not alone in this.
S– Slow down. There’s no need to try and act like a superhero constantly. We are only human. Take time for yourself, do what you can and are able to, and don’t place unrealistic expectations on yourself. You’re already doing your best!
What are some ways you try to reduce stress?
In the field of medicine there are many specialties that often work together to provide a comprehensive approach to patient care. For those dealing with MS, these specialties can oftentimes blend together, as the symptoms of the disease warrant concurrent methods of treatment. Trying to understand and recognize the responsibilities every specialist has in a patient’s care can be challenging, and in the rehabilitative treatment domain, the role of occupational therapy may be lesser known than other forms of therapy.
Occupational therapy (OT) focuses on treatments used to rehabilitate activities of daily living for individuals with physical, mental or developmental conditions. Working to develop and improve the skills needed to maintain day-to-day living and work habits are the goals of this therapy, with the client being at the forefront of treatment. Things like bathing, eating, dressing, job performance, driving and financial management are some of the areas of focus OT can impact with intervention. OTs work closely with the client, and many times with the family also to create an environment that’s conducive to the client’s needs; this can include the home, workplace, school, or other settings. Making changes that help modify particular tasks and teaching new skills helps clients regain control over their daily functioning and aids in maintaining their independence.
OTs help to create personalized interventions and treatment plans to help clients achieve personal goals of what they ultimately want to perform in their daily routine. Education is a major component of OT, as therapists and clients alike work together to learn what activities need modifying and how these changes can happen. The OT specialty often works in conjunction with other treatment specialists including physical, speech, and language therapists, in addition to other healthcare and social work professionals to develop an inclusive plan for client care.
If you are experiencing challenges with daily living and work activities, ask your doctor about OT to see if an evaluation is appropriate for you. Your doctor may be able to provide further information about this therapy and if it could benefit your needs. For additional information about occupational therapy, visit The American Occupational Therapy Association, Inc.