Life on a Roller Coaster

Submitted by deb on Wed, 07/06/2011 – 17:52

I am not my body!

When you have a chronic illness it’s important to cultivate a positive self-image. Even though there may be changes in a person’s capabilities to perform certain tasks it’s important to remember, “I have a body, but I am not my body.” Your body may find itself strong or weak, it may be well-rested or bone-tired, but that has nothing to do with your real self. Your body is an instrument of experience and action, but it is only an instrument. You must treat it well, cherish it, and seek to keep it in the best of health, but never mistake it for your real self: You have a body, but you are not your body. 

Life can sometimes be difficult for patients and their families. When a family member is blind, an amputee or is disabled in a predictable way, the family knows what to expect from day-to-day. The family knows what their disabled family member can and can’t do, knows what help they need, and what they can manage on their own. Unfortunately the nature of the symptoms of periodic paralysis means that abilities vary from day to day. It’s often difficult to know what help is needed. Maintaining the balance between dependence and independence is much harder than in cases where disability is consistent.

Unless they are severe, PP symptoms may not even be noticeable to the outsider. The patient may not be strong enough to stand or perform the simplest task and yet may look quite normal. Perhaps, because of the invisible nature of the disease, families tend to forget how limited the strength of the patient can be. Patients (especially mothers) are frequently expected to function well beyond their physical capabilities. Many push themselves beyond their limits. Patients themselves must learn to to do what is possible independently and ask for help when it is needed. 

Though the household routine may need adaptation, every attempt should be made to maintain a sense of normal family life. The patient should be as independent as possible but they should have the necessary support in place for times when they are unable to handle daily tasks.

You Look Wonderful!

It is sometimes disheartening for the person with PP to hear, “But you look so well!” No one wants to look sick, but somehow, it’s hard not to feel defensive when it’s subtly implied that you couldn’t possibly be as sick as you let on. Because those with periodic paralysis do tend to look better than they feel, it’s easy for others to assume that they are capable of more than they are. It takes courage, determination and creativity to lead as active and joyous a life as is possible under the circumstances. When energy is in limited supply it’s wise to spend it carefully on those things that bring you and the ones you love the most happiness. 

Most PP patients can lead normal (though adapted) lifestyles. “Normal” does not mean they will be able to keep up with their friends and family or lead the life they led before their symptoms began, but it means they are able to live at home, with their families, rather than in a care facility. It may take time and a good many trial to get the right combination of medications, to learn to eat a diet with the appropriate levels of potassium and carbohydrate, and to get symptoms under control. Daily management is the key, and most patients experience improvement with good therapy and management and some eventually have no symptoms at all. 

It’s helpful to remember that many others share or have shared your battle – and have won! Attention should be focused on the positives which remain, and not on what has been put on hold or lost. The person with PP may not be able to take their children skating but can listen when they need to talk, which is more than lots of physically active people ever do. It’s not what you can’t do that makes you the person you are, it’s what you do with what you have. 

Adapted from, “You, Me and Myasthenia Gravis”; Third Edition; Deborah Cavel-Greant; Ed: MW Nicolle MD, FRCPC, D.Phil.; Ku:Reh Press, 2006, Used with permission, © Deborah Cavel-Greant