Living Well With MS: Surviving an MS Relapse
Living with MS is like riding a roller coaster with many ups and downs, twists and turns, and sudden starts and stops. MS is unpredictable and unique to each individual. As the unexpected can happen at almost any time, it is important to be prepared for the challenges, both physically and mentally, especially when a relapse occurs.
It can be helpful to design an “MS Survival Kit” to help deal with those challenges. Here are some of the things which I keep in my Kit for when a relapse occurs, or I simply need the assistance of others. It is important to have a plan in place and put it into action so that you can concentrate on taking care of yourself and allowing your body to heal.
The basics of surviving and MS relapse
- The ability to ask for help. Establish a support network.
- Treatment for the relapse with Solumedrol or Acthar Gel.
- Time to rest your body. It usually takes at least two weeks before I begin to feel like myself after a round of Solumedrol infusions. Although I may have to get back to normal activities, I can still remember to be more patient with myself and allow myself more time to rest.
- Patience. Lots of patience.
Build your back-up team
- Organize. Make a list of your normal activities, responsibilities, and obligations in a typical two to four week time period. Some examples might include preparing meals, grocery shopping, laundry, house cleaning, yard maintenance, carpooling, work, work-related or social projects, attending children's activities, caring for pets, etc.
- Brainstorm. Think of people around you (including your family members) who would be willing to step in if asked. Add their name(s) next to each activity; include their phone number and email address.
- Contact each person on your list, telling them that you are planning ahead in the event that an MS relapse occurs. Ask them if they would be willing to help with specific item(s) on your list. Try to spread out the extra responsibilities among several individuals. Keep in mind that it will take more than just a couple of people to do everything which you normally do during a typical week.
- Keep this list handy, such as taped to the refrigerator or in your wallet. Make sure that the list is convenient as you may need someone else to help activate your backup team.
- Keep easy-to-prepare foods in the cupboards and freezer. Packages of frozen vegetables have many uses especially in creating easy soups. Cans of soup (low sodium), kidney beans or lentils, stewed tomatoes, and spaghetti are also very handy to have around. Also, get into the habit of preparing meals and freezing portions for future use.
- During steroid treatments, it is important to have plenty of fluids to drink. Drink mixes are handy to have around. Fruits and vegetables provide excellent nutrition and help to alleviate water retention. Avoid processed foods (including crackers) which are very high in sodium.
- Keep plenty of toiletries on hand so that you do not need to make extra trips to the store while you are home recuperating.
Seek medical treatment
- Add your neurologist's phone number to your back-up team list. Call the doctor's office to schedule an appointment as soon as you think that you are in a relapse. Be prepared to receive three to five days intravenous steroids.
- If you do need steroids, drink plenty of fluids, eat potassium-rich foods, avoid processed foods, and do not make any big decisions. Remember that steroids may cause insomnia and severe mood swings.
- Plan to take things a bit slower for at least two weeks, especially if you require steroids. Although you may begin to feel better quickly, take it easy.
- If you need physical therapy to regain strength and coordination, pace yourself and work steadily. Do not try to overdo it too soon.
- Keep in mind that life will get back to normal in due time. Be patient with yourself and with those around you.
- Be encouraged that you will be able to overcome and adapt to each new challenge as it arises. It may take a lot of work and require adjustments, but patience and persistence will pay off.
Remember that you are stronger than MS.
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