Are you the CEO of your MS?

Written By
Kim Fryling-Resare

Your health care team can consist of a lot of key players:  neurologist, primary care physician, nurse, opthamologist, etc.; however, the most important member of all is YOU!  Living with a chronic illness can make one feel so out of control. We need to find ways to take charge and play a vital role in our overall health care. One way that we can make sure that we are performing in that role is to be prepared for any appointments or check-ups. 

I like to think of those check-ups like a business meeting. Acting as president and CEO of my health, I’m meeting with key members of my team. This business meeting is about me and my health, and it is important that I take advantage of this time to confirm I’m on track and managing my illness to the best of my ability.

The following are a few tips that I’ve found helpful on preparing for those important appointments:

Keep a health journal.  Sometimes keeping a health journal is helpful so you can reference it during your appointment. You can use it to jot down some notes or answers to any questions, and you can track anything that you personally feel is worth noting. I’ve found that keeping track helps to keep me in tune with what is going on with my body. Here are some examples of what I track in my notebook:

• Symptoms and/or relapses. I keep a calendar and write down if I experience something different or if I’m feeling “off” in any way. It might not be MS but it can’t hurt to make note of it. I also keep a running history of when I had flares or exacerbations so I can get an overall picture of how I’m doing over time. In fact, this tracking has revealed to me that I’m more likely to have a flare in the winter months. 
• How I’m feeling mentally and physically. I make a quick note if I’m feeling more fatigued, depressed, anxious, foggy or frustrated. I know if I didn’t write anything, then I was probably ok and feeling “normal” (whatever “normal” is for me). 
• Exercise.  I like to track my exercise to make sure I’m sticking to it and not slacking off. I’ve found that when I exercise, I feel better overall – both mentally and physically - and it is an important part of my routine. 
• Medications and supplements. I track dosage, time and day, and any possible side effects.  When I was on injectable medications, I tracked injection sites to make sure I was rotating properly and not hitting the same spot too many times. I also keep track of which medications that I’ve been on over the course of time, even IV steroids that I may have received during flares. Again, this raises my awareness of what is working and what is not working for me, aiding me in future treatment decisions.
• Any questions or concerns that may have come up since my last appointment. Again, this appointment is about me and all questions and concerns should be addressed.  

If keeping a physical notebook doesn’t interest you, there are plenty of mobile apps out there that may suit your needs better.  Anything from tracking exercise and diet to tracking medication administration. For example, I received a smart watch last year to track my daily steps and sleep. Now, I wear it all the time, and only have it off when I’m charging it.   

Bring someone with you. Having someone there with you is always good for support and of course, it is always nice to have company on the ride and in the waiting room. More importantly, this person can serve an even greater role. Having another person sit in on your appointments ensures that you are hearing all of the information from your healthcare provider. Sometimes we hear only what we want to hear or we focus too much on one detail.

Make sure to do some “post-game analysis” with this person to reassess the appointment. Tell them what you thought of the appointment and ask for their interpretation and key takeaways. They may have picked up on something that you didn’t.

I found it especially useful in the early years to have someone with me. I was dealing with a lot of emotions and sometimes couldn’t necessarily sift through those to concentrate on the key components of the appointment. 

As always, you need to find out what works for you. I’m sure there are many different ways that you can make sure you are acting as the “CEO of your health.”

SHARE WITH US:  What are some things that you do to take control of your health care?

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