Managing the Emotional Impacts of Challenging Symptoms

The first few years living with a diagnosis of multiple sclerosis (MS) are often described as a whirlwind. No one prepares for a chronic illness, especially one as unpredictable as MS. While you work closely with your neurologist and other specialty care physicians to manage the physical symptoms that may present, how do you manage the emotional impact that a chronic illness may put forward.

Symptoms such as Pseudobulbar Affect that are characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger can be challenging to emotionally manage. These episodes often occur in public settings and can draw unwanted attention. It is important to remember that Pseudobulbar Affect is a symptom that is a direct result of a neurologic condition; it is not an indicator of a hidden or suppressed feeling. For some who experience this symptom, they question whether or not the inappropriate laughter or crying is an actual feeling that perhaps they were not aware of; this is not the case.

Embarrassing or troubling symptoms call in to question self-worth and can directly impact the way you feel about your MS. These feelings are normal and come along with the grieving process that is associated with chronic illness. Finding support through a friend or family member or even seeking the support of a mental health counselor can be beneficial. The following tips can also be of support during these emotional times:

  • Remain present: Harboring too much thought and attention to things in your past or in the future can cause unwanted stress and anxiety.
  • Value yourself based on your present abilities. Remain positive about what you can do now, versus what you could do before.
  • Put yourself first! Understand your needs and identify ways to meet those needs.

The MS Conversations blog is a support to the entire MS Community. Please use the comment section below to share your story, or to support to another individual with MS.

Share Button

Tips For Managing MS Fatigue

Fatigue is one of the many symptoms of multiple sclerosis. It affects the majority of individuals with an MS diagnosis, and can be challenging to manage. According to Can Do MS, there are many helpful and practical things you can do to help boost your energy and improve your daily activities.

Can Do MS sponsored a webinar in October titled, “Tired of Being Tired? Tips, Tools & Techniques to Keep You Going.” This webinar can be watched on the Archived Webinar section of their website.

To summarize, Can Do MS recommends the “4 P’s” as a potential solution for managing fatigue:

  1. Planning:  Consider using a day planner or phone app to help manage what you may have going on. This could help you track doctors’ appointments, medication regiment, meal planning and shopping trips, and ensure you do not try to do too much on any one specific day.
  2. Prioritizing:  If you are feeling tired on a particular day, decide what is important or must get accomplished and what can be put off for another day. Do those things that need to get done and give yourself permission to push the other tasks off for a day when you have more energy.
  3. Pacing:  This strategy will help prevent you from feeling overwhelmed when at work. If you expect a task to take an hour, don’t pressure yourself to get it done in an hour. Instead, give yourself an hour and a half and take a ten minute break for every 20 minutes of work.
  4. Positioning:  This involves rethinking the location of physical things in your life to make your daily activities simpler and more efficient. One example of this would be placing everyday cooking utensils in a convenient, easy to reach place in the kitchen so you do not have to exert yourself every time you reach for them. Making simple adjustments may help you save some energy for use at other times throughout the day.

In addition to managing your fatigue, it might also be a good idea to track your activity to determine what is causing you the most fatigue. This better understanding of your fatigue could help you modify your activities and help you conserve energy throughout the day. MSAA’s free mobile app – My MS Manager, now has a newly added fatigue scale to help you track and measure your fatigue. The app also allows you to connect to physicians and other members of your care team via the app to securely share your progress and reports. Click here to learn more and download the free app.

By following the “4 P’s” and tracking your fatigue, you will hopefully have a better understanding of what activities affect you the most and an easy tool to you manage your daily fatigue better.

Share Button

Keeping Track of your MS

I thought I would share a “tip” on how I keep track of my MS – so I’m able to recall things when needed or share information with other members of my health care team (who are not my neurologist).

So here is what I’ve done. I went and bought a HUGE binder… and I requested all my Medical Records… Personally, I had to get medical records from my diagnosing neurologist (general neurologist) and my MS Specialist neurologist. But I also got my records from all my other doctors.

I find this a lot easier when I need to recall past treatment… while I can sit here and name off MS treatments I’ve taken, I can’t always recall the dates in which I was on certain medications and/or received a specific treatment for something.

My medical records binder also includes my MRI reports. I also requested my MRI reports from the radiology clinic, because I’ve found that when I have a followup appointment, and I have the records on hand… it’s easier to go over with my neurologist… especially since results can take some time to be sent.

Now let me say that this is a work in progress… because I’m always getting more medical records… I usually collect them after I have a “change” in my health… or every 6 months.

I also take the time to place my records in order by date. So it’s kind of like a binder timeline of my MS…

I’m currently working on getting dividers for the binder. While I like things in order by date, I thought it would be beneficial to categorize things further, for example: Primary Care, Neurologist, MRI Reports, etc. I’m also contemplating getting a small binder for each category, so if needed, I can take a binder with me.

It’s all about personal preference… and honestly… some people could carry their medical records with them at once… but I have A LOT of records, so that wouldn’t be so easy.

It may not be needed a lot… but I can tell you that I’m very happy that I requested my records… because it has helped me make  decisions since I was diagnosed. For example, I decided to change from my diagnosing neurologist, to a specialist. I had been contemplating the idea, but then  I went over my medical records and I saw that there were things documented in the records that were “discussed” with my mother and I… that actually were NOT.

Just know that as a patient, you have the rights to your medical records. You never know when they might come in handy and they may help to keep you on track.

Share Button