ELLIE'S BLOG on Living Well with MS

The first World MS Day was launched on May 27 , 2009 to increase awareness of Multiple Sclerosis and to help people with MS live fuller lives. This year they are highlighting employment as a means to help people with MS live these fuller richer lives. See   http://worldmsday.org/

Why employment ? Because although many people who have been diagnosed with multiple sclerosis are able to work after their diagnoses many more others have to give up work.

There is no doubt if there was more understanding of the disease it would enable them to stay employed.  In many ways I think of this as being a hangover from past discrimination.

Not only is it important for a young adult's self realization to be employed but also for emotional and psychological well being.  Supporting a family , starting and advancing in a planned a career requires you to be employed. Most people with MS make adjustments along the way and are practical about what they choose to pursue based on the disease and its possible progression.

There is also the question of money. MS is a very expensive disease. These new wonderful biological drugs and the other new drugs coming down the pipeline that make a marvelous difference in a person's ability to be more functional are frightfully expensive. If you don't have good Health Insurance or are not very very wealthy you may not be able to take advantage of these drugs. In many ways it's like a catch 22. If you have a good paying job the chances are you have good health care coverage too. If due to MS you can only work part time having Health Insurance coverage to pay for these drugs is rare.  Also if you change jobs and MS is a prior condition you may lose Health Insurance coverage. And you may not be able to afford to buy it yourself.

Making the necessary modifications in your home as you progress like, putting in ramps,accessible bathrooms,kitchens etc.is not cheap.  And buying adaptive equipment from crutches to wheelchairs, visual and cognitive aides etc. which you might need to be able to work takes money.

Then there is that "Fatigue" factor. And the fatigue from MS is not a normal person's fatigue. There is no specific thing you due that causes it because it is Neurological fatigue. This is why people are told to take naps. Essentially they are shutting down their CNS (Central Nervous System-brain and spinal cord nerve tracts). Then when enough time elapses letting it reboot. (Like your computer).

It's also useful to do preventive maintenance like resting before an event or using an appropriate assistive device part of the time to save limited energy due to CNS involvement. When I was employed I would go to bed at 9-930 at night because I needed a good night's sleep. I also laid out my clothes and anything else I would need the the next day the night before. Then when I woke up I didn't tire myself out before I left the house for work. And at work when I became more involved I was very careful about how I used my time.

Going away on a special event whether for business or pleasure always requires very careful planning. Resting before hand as well as packing.That way nothing will have to be done that will exhaust you before you leave the house.

I recently went to a wedding in Boston. My husband and my younger son shared  the driving and I sat in back.  This way I was able to completely rest on my way up to Boston and save my energy for the event. I used my wheelchair too when we arrived that night before the wedding so I could be well rested. 

I also smartly used my wheelchair at the wedding even though I was in a remission and could walk a distance. By using my wheelchair I was able to sit yet be part of a talking group  That way I saved my energy for walking with my cane where it would be difficult to use a wheelchair. And of course having a dance with my husband -That was special! 

Now here in the United States where we still don't have universal Health Care increasing your functional ability to be employed can be a great problem. Because if you don't have Health Insurance and can't afford these new drugs or adaptive equipment you are losing out. Because as I know from personal experience the drugs for MS basically can enable you to have more energy, have less progression of your disease and have less relapse's.  And the home modifications and adaptive equipment ensure you can go that extra mile that otherwise you could not do.

So it's a double whammy.  You don't have access to the medication and adaptive equipment that would help you be employed because you have to have employment to afford the medication and the equipment.  If you are unemployed or moved onto disability insurance or SSI you are forced into a life of a poverty. But if you were allowed to use your talents by modifications and adaptations and you could get the proper medication you could be a contributing citizen. You could be making contributions to society thru your employment. And you could be paying taxes that help the economy and other people And you could have many,many beautiful days.

Watch this Video  "Beautiful Day"video uploaded by MSIF Media

ellie