Getting the Family In On It
No two people have the same symptoms of multiple sclerosis (MS) and no MS flare will be the same as the one that came before it. Symptoms have a wide range of intensity, frequency and duration. People with MS can experience everything from short periods of minor tingling to expended bouts of complete weakness.
Reacting to symptoms is often difficult for people with MS because the physical symptoms trigger emotional symptoms including feelings of depression, anger or anxiety. These unwanted feelings distort the way you think to be more negative and your ability to cope becomes reduced.
Because of this, it is very useful to plan effective coping skills before your next flare rather than planning while symptoms impair your judgment. A multiple sclerosis thermometer is a fun, effective tool that can include the entire family.
Building your Thermometer
- First you will need a representation of a thermometer. From simple to complex, many templates can be found online. Making your own with poster board and construction paper is a great way to involve your family—everyone will benefit from this being a family affair. Don’t forget something to represent you, like a picture backed with tape or Velcro that you can move depending on the day.
- Next you need to identify symptoms that you typically experience during a flare and create a ranking system. Relate your symptoms to a thermometer with 0 degrees being cool, calm and symptom-free and 120 degrees meaning many intense symptoms. Allow flexibility with this as symptoms may change with your experience but plan to make around 5 or 6 temperature points. This will serve as a key to remind you and let others know what symptoms certain temperatures represent.
- Now, write down what you can do in each situation to either reduce symptoms or increase comfort. Keep in mind that your needs and abilities will change from 30 degrees to 85 degrees. Knowing and accepting your limitations is crucial for this step. Activities can include coping skills such as walking and journaling, distractions including watching a movie and listening to music, having a certain snack, mindfulness exercises, relaxation techniques and any other behavior that will assist you. Remind yourself to identify and manage unwanted thoughts. Being overly negative or worried will likely worsen your flare. Watch your thoughts.
- The following step involves thinking about and listing what others can do for you at certain levels. Perhaps at a 20, people should encourage you to take a walk. At 60, your daughter can offer you a massage. At 110, your husband should call your doctor. Collaborate with your supports to arrive at solutions where everyone is comfortable.
- Compile the information from steps 2, 3 and 4 into one central location that you and others can refer to as needed. Find a convenient spot for your thermometer (the fridge seems perfect) and begin rating your symptoms. Posting your rating in your online status or messaging your supports is a way to keep them involved. Doing this daily allows for symptom tracking and, hopefully, finding patterns that can prevent future flares.
Another flare is coming. Unfortunately, this is only a matter of time. Building and incorporating an MS thermometer into your daily routine will give you and your supports the know-how to manage your symptoms. If you cannot prevent you should prepare.
Have you made a multiple sclerosis thermometer? Send us a picture! firstname.lastname@example.org