How Journaling for MS Can Help
Being diagnosed with multiple sclerosis (MS) is a jarring experience to say the least. Each of us is riddled with new experiences, physical symptoms and relationship changes. The duty of learning new versions of ourselves is bestowed upon us; we are left to deal with life, and it’s a tendency to force us all into situations that stretch our understanding of the world and our place within it. Journaling for MS can help in sorting out these experiences.
When a person is first diagnosed with MS, everything is confusing. We have to see lots of doctors and go through countless procedures and tests. Our bodies are experiencing their own unique expressions of symptoms.
We realize how unpredictable and sneaky this disease is. And we begin to realize that our lives will never be laid out before us, as we once believed that they would be, again.
A Journal Is a Safe Space
Keeping a daily journal is a great way to keep ourselves grounded. There is so much thrust upon a person who is entering this community of ours, the challenges and changes can feel overwhelming and isolating.
A journal can be a safe space. A home base of sorts, where we can go, to remember who we are beyond this disease.
It is hard to be honest to even our closest allies about what we are experiencing. How do we form the words and share our deepest fears when they are so private and heavy?
A journal is always there, waiting to listen. Ready to keep everything locked and sealed from public view. A journal never gets tired. It never judges. It never speaks for you. A journal is always ready for more.
There are always empty pages ahead, begging to be filled. Page after page, day after day, a journal will keep your story sacred. It holds your value as a reminder that you cannot be silenced, erased or ignored.
A Place to Reflect Upon Progress and Pitfalls
A journal can help us to reflect on how far we have come on our journey. We can track our losses and our gains to see what therapies or treatments are most helpful.
Each one of us has a pattern or sweet spot we can find in our daily lives to help the days pass. For me, journaling has helped in seeing my triggers for fatigue.
Once I was able to look back and see the things that were most commonly causing fatigue, I could tweak my behavior and live with more energy.
Journaling can also aid in understanding our symptoms better. When I was first diagnosed, I had no idea how long my relapse was going to last.
I can still, very distinctly, remember all of the “I don’t knows" that came out of my neurologist’s mouth. I may never know for sure how my body is going to behave tomorrow, but after nine years with MS, I have a fairly good idea, and that helps me sleep at night. Journaling has helped me to keep track of the symptoms that I have gained, the symptoms that have progressed and the symptoms that have healed.
Finding Your Groove
It is much easier to move through relapses and all of the days in between when we can understand the effectiveness of our medications. Journaling is an excellent way of keeping track of our changes and reactions to medications over time.
When we are in the thick of it, it is nice to have the ability to look back upon our last relapse to understand a basic timeline of our body’s reactions to steroids and physical therapy. A relapse can feel like an eternity, but a journal can show the incremental goal posts towards normalcy again.
Keeping track of disease-modifying drugs is better done with a journal as well. Many of us struggle with our meds in one way or another; remembering to take meds consistently, keeping track of injection sites and recognizing negative physical reactions to medications, are all important aspects when living a life with a chronic illness.
Making a habit of logging these details on a daily basis aids in protection from the negative consequences that can come from drug fatigue and complacency.
Journaling Can Help Us Keep Health and Fit
Speaking of complacency, a journal is a great tool to keep us active and physically fit, rather than sedentary. It is easy to stop moving when you have MS. It is only very recently that doctors have been advising patients to exercise more.
Exercise is incredibly beneficial to those with MS. Yet, I cannot count the times that my own doctor has advised me to slow down.
Developing a solid exercise routine has been fully on my shoulders. I use journaling apps on my phone to help me track my progress and achieve my fitness goals.
Same goes for nutrition! Journaling apps are now free and fully integrated with each other. It is now as easy as a finger tap on a screen to tally up our nutrition, weight, heart rate and physical changes. Keeping track of your food intake is a great way to monitor calorie intake and appetite (with MS loss of appetite is not uncommon) and determine if there are any foods your body reacts poorly to. The resources are seemingly limitless and becoming more so every day.
There are countless ways journaling for MS can contribute to our well-being every day. We, by no means, have to journal every day in every way. However, I have found journaling to be an incredible resource — a lifeline to stability and security.
Finding Your Path With MS
I have found journaling helps me to effectively manage (and cope with) my disease with less stress and greater confidence. It helps me measure my progress towards my life and physical goals.
It helps me identify any obstacles agitating my life or holding back my wellbeing. Most importantly, it helps me take myself out of the moment to reflect on my life.
It is easy to get lost in all of the little things MS likes to throw at us. It is easy to become distracted by the burdens of rejection, isolation, and loneliness that come along with this disease.
We each have a path, a story, unknown to the outside world. Journaling for MS is our gateway to further meaning, better understanding and a deeper life than we had previously imagined for ourselves.
Journaling, for me, has been the answer to my life. MS has forced me to write it all down. MS has forced me to recognize the value of my days passed and the beautiful unpredictability of my days to come. I have learned to embrace it all.