Life with MS

Things will never be the same. I know this. After five years, you’d think I’d be more at peace with my diagnosis but it’s hard living with this disease. Being told you suffer from a condition that has no cure and is unpredictable, will change your life as you know it.  There are very few certainties to be found anywhere in any aspect of this disease.

With an MS diagnosis also comes loss. After a bad day, I find myself feeling sorry for myself and grieving the life I once had. On these days it is not hard to work myself up into a frenzy of sobs and tears. How do I incorporate the reality of the disease into my life without letting it dominate my life? Does MS change who I am? Can I be me with MS?

Acceptance is an evolving, continuing, and often repetitive process. Acceptance is not an event or a task that once achieved is completed. There aren’t any set steps to take to get from diagnosis to acceptance. I often find myself forgetting this.

There is a whole world and a whole life beyond multiple sclerosis. We did not choose to have MS, we didn’t do anything wrong to get MS, MS just happened. Now all I need to do is accept it.

MS-Related Fatigue

One of the most difficult symptoms for those without MS to understand is fatigue. MS-related fatigue is a very common symptom of MS and is different from regular fatigue. It generally occurs daily and can occur in the morning despite a good night's sleep. It can worsen during the day and make it difficult to do normal activities; it can even make you feel like you need to immediately stop what you are doing and lie down. Limbs may feel heavy and hard to use. Cognitive fatigue or “cog fog” may make it difficult to follow a conversation or think of words or numbers. Because it is invisible and unpredictable, it makes it harder for others to understand and appreciate.

MS-Related Fatigue is a pretty new symptom for me. Within the last year, I find myself so unbelievably tired that I can fall asleep by just putting my chin on my chest. Literally nodding off. This level of fatigue goes beyond what I used to think of as “tired” – it’s a full body and mind fog.  A good night’s sleep and a nap during the day can’t remedy it.

Thankfully, there are some options to help manage fatigue. Medication, complementary therapies, rehabilitation and exercise can help manage fatigue. So can conserving energy. Following these tips may help:

1.       Work closely with your MS healthcare providers.

2.      Avoid heat exposure.

3.      Take good care of yourself.

4.      Combine exercise with mindfulness.

5.      Take breaks.

6.      Discuss medication options with your doctor.

7.      Simplify your life.

If you have MS, it’s not your fault that you are tired beyond imagination. Acknowledge your fatigue and recognize that it is a symptom like any other that may be treatable. Rest and take breaks when you need to and don’t feel guilty about doing so. We need to conserve our energy and manage our fatigue. Finally, prioritize listening to your body and taking care of yourself.

MS in Focus Magazine: Fatigue in MS