Fatigue and multiple sclerosis
Q. At work I have difficulty in following through with my office tasks because I’m easily distracted and have trouble concentrating and remembering details, especially in the afternoon. My colleagues have commented that I seem like a different person in the first part of the day. I’m sure this must somehow be related to my MS, but how can I manage these problems before I risk losing my job?
A. A first step in managing problems with concentration and memory is to understand whether they occur during a particular part of the day, or are present more or less all of the time. If it is clear that concentration is more difficult in the afternoon, this is a sign that the cause could be related to MS fatigue. Energy conservation techniques and fatigue management strategies can help in managing these problems.
Q. I’m so exhausted all of the time that I feel very unmotivated to have sex with my partner. He feels threatened that I’m no longer interested in him and I wonder if I’m just being lazy. Is this related to my MS and is there anything I can do about it?
A. Sexual problems can often be related to other MS symptoms, such as fatigue. Energy conservation and fatigue management are important in promoting sexual activity and enjoyment. For some people, implementing strategies such as having sex when one’s energy level is at its highest, napping before sex, and minimising positions that may increase fatigue, are sufficient for lessening the impact fatigue has on a sexual relationship. Others may require pharmacological intervention or a combination of medication and self-management strategies.
Q. When our MS society plans seminars and conferences people with MS are not always satisfied with the organisation because of how fatiguing an all-day meeting can be for them. What are some practical tips for helping our conference attendees enjoy a meeting while minimising fatigue?
A. When organising conferences, seminars and courses in which people with MS participate, it is important to choose a location that is accessible, has an easy entry and exit, has toilet facilities not far from the meeting room, a restaurant, elevators and so on. It is very important that the meeting space has temperature control, such as air conditioning. When air conditioning is not available, electric fans can be helpful. The programme should include several breaks throughout the meeting, with enough time for going to the toilet and having a drink. Places to sit and to rest glasses or plates should be available during breaks. Avoid buffet-style meals! Arrange for volunteers to be available to help during breaks and meals. Leave cold water and glasses in the back of the room throughout the meeting.
| Mr Ian Gray, President of Persons with MS in Victoria, Australia, talks with Dr Elizabeth McDonald about the fatigue he experiences with his MS.
How long have you had MS?
My diagnosis was confirmed in 1990, but looking back I know I had been fighting the disease for some considerable time prior to this.
How has MS affected you?
Initially my walking was affected. I noticed that I began to stumble. Over the years the distance I could walk became less. I became extremely fatigued after relatively minor exertion and noticed that my memory was not as reliable as before. I retired from work in April 1998.
The fatigue you experience – can you describe it?
The fatigue is like an overwhelming feeling of unnatural tiredness that exacerbates all my MS symptoms to the extent that I can no longer function. Rest returns me to normality. The time this takes depends on the ambient temperature.
Has your fatigue changed since diagnosis?
My fatigue has increased. Initially I hardly noticed it; then with secondary progressive MS I became fatigued more easily with less exercise. It now appears to have stabilised.
How does fatigue impact on your lifestyle?
I have to use a wheelchair to preserve energy. I can wake up feeling energetic and after a short period of activity become fatigued. It takes me much longer to complete tasks. I have to pace myself to do anything.
Has your fatigue had an impact on your family and friends?
Yes, it restricts activity for everyone, but now we adapt and my family and friends are all supportive.
Do you rest when tired or push on?
Sometimes I push on, particularly if I am doing something I enjoy. For instance, when gardening on my hands and knees, if I overdo things I can get so fatigued that I cannot get up without help. Then it takes a little longer to recover.
Ian, thank you for sharing your story with us. |
|
