How a Simple MS Journal Can Make Life Easier
I'm not a big fan of the new high-tech tracking devices (for fitness, diet, sleep, etc.).
Life is pretty overfull for me as a working mom with MS. Using these apps and devices constitutes just one more project I have to add to my day-to-day (and long) list of things to do… among things that are yet overdue!
However, one of the best things I did when I was first diagnosed with MS was make myself an MS diary. It was just a paper journal and a pen, with a list and a couple of prompts.
I completed this nightly until remission returned, then completed it once a week up until about six months had passed. Now, just once a month seems to be my pace.
If I were to have a relapse? I would go back to daily. It was that useful for me.
Why make an MS journal?
This was one task that literally made life easier for me when I needed life to be easier.
By tracking a range of things (symptoms, moods, observations about medications and side effects, notes about insurance and assistance programs, exercise and diet, sources of stress, even fears and gratitudes), I was able to have a clarified idea of where I was at with my MS at any given moment.
This probably isn't important if you're in remission and feeling great, but during a full-on relapse, it's one way to take charge over your life when your immune system has other plans.
Some of the things that my MS journal simplified for me:
More productive doctor visits
I had a quick reference regarding symptoms and side effects as well as a place where any questions I had were captured.
Right before my visit, I literally typed up a short list of these observations and my questions. There was no nervous reaching for information from my memory, and all of my questions were answered.
This personalized paper trail was extremely helpful during discussions about treatment and lifestyle changes.
More proactive problem solving
This journal created a paper trail that helped us both identify triggers and solutions for some recurring problems.
For instance, I had a bunch of digestive issues that we figured out weren't just related to my medication, but also to my IBS and GERD. By treating those problems more proactively, I was able to find relief.
I've since treated my carpal tunnel syndrome and now have less pain in my wrists… and a sleep study confirmed my daytime fatigue is mostly caused by untreated sleep apnea. These two problems were things I'd previously chalked up to MS, but they aren't, and now I'm feeling much better.
A good reminder: Not everything is caused by MS.
A sense of control
We really can't control the fact we have MS.
Granted, there are medications, and tips for stress management, dietary improvement, safe and smart exercise, and activities that can benefit people with MS, such as yoga, meditation, and napping. All good things!
But I think the sense of control comes from being your own "coach" in such matters. Keeping to a plan for intentional living means outlining what you think will help you feel better, in the long run. Using this plan to forge ahead, one day at a time makes you remember that you can be your own best friend by taking care of yourself.
A better relationship with my doctor
I have had great relationships with my doctors already, but I think the fact that I kept this MS journal inspired the best out of them as well.
For instance, by learning the names of symptoms (something I would chart in my journal) and discussing them with my doctor to ensure I understood why they happened and what I could do about them shows them I am a good self-manager.
That's something a doctor will respect and be a partner to. It's easier to be a team player when everyone is checked in.
Despite what many people think, there are tons of doctors who prefer to work with patients who are proactive and willing to learn; after all, these are generally the ones who have better outcomes.
What is an MS journal, exactly?
I made mine out of a large format recycled composition book with a pen I kept clipped to it. On the inside of the cover I wrote a checklist of things that I wanted to think about everyday during a relapse.
This way, I could use my journal not only for "personal analytics," but as a therapeutic task, a way to store questions and thoughts, and to keep track of details so I wouldn't have to remember so much, all the time.
(MS and memory problems go hand in hand, right?)
My checklist looked like this:
- Symptom check
- Mood right now
- Meds taken (when, what)
- Pharma side effects
- Diet considerations
- Also on my mind
Every night, I would reflect on what happened that day within the context of these list items.
Some things required a lot of journaling, while others might be skipped. My notes were as detailed as they needed to be. Sometimes just a couple of words. Sometimes a whole long diatribe because it was one of those days.
My symptom check was a little more comprehensive. It was a separate list I kept on the opposite side of the main checklist.
I broke down my symptoms as they related to my head (pain, executive function, mood, vision, ears), digestive system (urinary, gastrointestinal, metabolic), generalized body function (pain, sensory, energy levels, muscular/motor), "female" issues, and other (breathing, allergies).
It was rather detailed, but helped me clarify my worst symptoms and side effects as well as identify oddball symptoms that may not be related to MS at all.
That is how I have come to treat the aforementioned conditions as well as learn I was perimenopausal, had a mild dairy allergy, and had developed RA in my feet.
What else could go into an MS journal?
You could track a whole different set of items than I did. Your MS journal really ought to be unique to you: your concerns, your symptoms, your side effects.
Other things you might want to record could include:
- Other self-monitored conditions (such as diabetes test results, blood pressure numbers)
You could also just use it to free associate during times of stress or pain. That's a perfectly excellent reason to keep an MS journal.
A word of caution
I've learned some things NOT to do when keeping an MS diary.
Don't over-focus on symptoms and side effects
You can become so hyperaware of your disease that it consumes all your attention. The journal can be your one daily opportunity to do so, but please make sure you focus on living your whole, full life the rest of the time.
Don't keep a journal if you don't find it therapeutic
Not everybody likes to track these things. If you dread reporting to your nightly diary, then scrap it. You have enough to worry about as a person with MS; maybe it's getting rid of the journaling that relieves you of stress!
Always end on a positive note
I used my journal to track things I was grateful for, at least at the beginning. It didn't have to be anything related to MS, it just had to be positive and something I noticed.
Gratitude journals right before bed can truly help you relax and fall asleep.
(PS: Sometimes, using your journal as a way to capture worries can have the same effect.)
Do it for yourself
You may have receptive doctors who thrill that you have taken the time to track your symptoms.
Or you may have a doctor who is more aloof and doesn't want to hear about your journal.
In any case, write this diary for your own benefit. If you don't have a supportive doctor, your journal could be the sounding board you're missing.
Keep it simple
I think the smartphone apps that are available for these purposes might work for some. If you find apps that work for you, by all means, use them!
But if you find them a poor fit for what you want to chronicle, a basic paper and pencil model also works. I felt like I wanted to avoid putting one more task on an electronic screen when I started mine.
Be as detailed or as thrifty with your words as you require. Ultimately, do what you find the most benefit doing. You'll be glad you did!
Do you have a fear of needles and take medication that requires injection?