By: Stacie Prada
Most of my energy is focused on managing my health with the goal of avoiding relapses and disease progression. Since fatigue tends to be my earliest symptom when I’m headed for a relapse, I monitor my fatigue level and adapt my activities and schedule to treat fatigue seriously.
By the time I was diagnosed with MS, fatigue had become a constant presence in my health. I felt I had no choice but to push through it and only stop when I physically could no longer do any more. Just because I could push through it at times, it came at the price of relapses. In the span of a little more than a year after learning I had MS, I had three exacerbations.
Fortunately my MS is relapse remitting, and my body has responded well to disease modifying medication and lifestyle changes. It’s now been four years since I’ve felt like I had an exacerbation, and my MRI scans support the conclusion that I haven’t had a relapse in that time. Please know that I know I’m lucky this is working for me, and someone else may do everything they can and still have relapses. What I’m doing now may not work forever, but I’ll keep doing it as long as it works for me.
Specifically I listen to my body and take it seriously when my energy level dips. I track my fatigue level and adapt my activities based on that level. When fatigue overwhelms me or I’m having an exacerbation, I prioritize self care above all else. The hard part about self care is that what I think I may need in the moment might not be helpful for me in the long run. A good example is sleeping during the day. Sleeping more than an hour or so during the day usually upsets my sleep hygiene and keeps me up during the night. Once that starts, it can take a week or so to get back on track and sleeping through the night again.
If I’ve hit the point where I realize I need to stay home from work or other activities, I’ll clear my calendar. I’ll prioritize obligations and only do the top of the list based on mandatory items and those that will support me the most. The threshold for a mandatory item is really high at this point, and they’re things that absolutely can’t wait to be done differently.
Following these guidelines helps me make good use of my time for physical health recovery and mental health maintenance:
1. Look into yourself. What do you need most right now? The answer will be different from moment to moment. Check in frequently.
2. Rally the troops on standby. Let people know who care that you’re managing your health and this is a normal part of your life. Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input. Focus on one thing at a time. Limit technology as it can make your eyes tired and tax your brain.
4. Wear comfortable clothes, but still get dressed and groomed if possible. You’re not sick; you’re maintaining your health!
5. Move your body. Stretch, move each part of your body if possible. A slow yoga sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit. It takes energy, but the physical and emotional reward is tremendous. If you don’t feel up to much movement, just move from the bed to the sofa or a chair. Any movement helps!
6. Don’t move your body. Lay down. Close your eyes. Meditate. Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary. Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come.
8. Open the drapes or blinds. Let in the daylight. Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible.
10. Do something productive. Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish. Limit it to the level of your energy, and don’t push too hard. Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive. Know your work and social commitments so you may cancel or postpone them proactively. Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled. Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause. An unscheduled hour or two during your work day may be ideal for taking some personal time off from work. This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!
I wrote about my Pause Approach during a particularly difficult week years ago, and I still refer to the guidelines I created for myself when I’m feeling vulnerable to an MS relapse. It reduces time and energy spent trying to decide what I should do, and it helps me give myself permission to take care of myself. That’s the best I can do for myself as a person living with MS.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/