MS, Limits, and Loneliness

MS is a tough disease. Not only do you have to deal with medical issues, you have to deal with social ones. Loneliness seems to be one of the most difficult things to deal with concerning MS.

Impacts on my social life come in a variety of forms. I find that MS restricts my ability to interact socially as immobility and fatigue limit my time away from home. I am unable to go to inaccessible homes or restaurants. Unknown situations can cause anxiety therefore keeping me home, in my comfort zone.

Fatigue, the kind brought on by MS, is a disabling condition. Having MS makes movement an activity of its own that requires concentration and effort. People with MS need to be aware of each and every activity required by an outing or event.

Often noted in the MS community is the social stigma surrounding MS due to ignorance, where people do not understand or appreciate the invisible and painful effects of the condition. For me, the effects are more obvious as people can see my wheelchair. For others, visual cues are less obvious, and observers can mistake symptoms for intoxication.

MS affects everyone in different ways, and when fatigue or an attack is happening, life shuts down. While your body is trying to fight its way back to normal, it is difficult to experience loneliness, and all the emotions it comes with.

As you can tell, I get very frustrated with this disease. Not only do I have to take care of myself, I have to be more proactive in creating social activities I can take part in or risk distancing myself from the friends and family I love. I often worry about being too boring. At times like these, I find it is very important to be kind to myself. 

Ready? 1, 2, 3!

Sometimes I think the theme to my life with MS is “Ready? 1, 2, 3!” This is what I say to myself to get me ready to transfer on my own. I also say this to my husband or other people helping me out so we are on the same page and ready to move. Go on 3.

One of the hardest things about MS is dealing with the loss of independence. Unfortunately, I know what dependence feels like. I relate to the discomfort of relying on others. I find myself feeling guilty every time I have to ask for help.

But maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before. By allowing yourself to do things differently and using assistive devices – there are an array of energy- and labor-saving tools and devices that allow you to stay active and productive - can save you energy  Physical and Occupational Therapists can help you modify your environment to optimize control and independence. I have grab bars next to heightened toilets, a bed rail, have reacher/gabbers placed around the house, use a shower transfer bench, and use a riser recliner.

I have to remind myself that it’s not my fault. MS progresses because that is the natural course of the disease. Do not mistake needing help for weakness, or independence for strength. 

Accessible?

Sometimes my MS seems to be a continuous series of things I can't do anymore and places I can’t go anymore.

The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush. The ADA prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in American life.

It’s been over 25 years since the ADA was signed into law and unfortunately progress has stalled. I’ve seen things that confirm this for me. When a place, particularly a business, claims to be wheelchair accessible, a lot of times it really isn’t – it is only accessible to the minimal required standards. They think that just because there isn’t a step to enter the establishment it is accessible. False!  The doorway may be too narrow to accommodate my power wheelchair, the door may be too heavy or awkward for me to open on my own or there isn’t an automatic door. Public restrooms often don’t get it right either.  Many times there isn’t a support bar next to the toilet that is an ADA regulated height.

The thing is: ADA is not an accessibility guideline, it is a law. Using your accessible bathroom for extra storage doesn’t cut it. At an accessibility conference in Melbourne, Australia in March of last year, the main speaker (who was in a wheelchair) had to be carried on stage because there weren’t any ramps. At an accessibility conference, the stage was not accessible. You can read more about this story here.

Over the Christmas holiday, my husband and I planned to take a short trip to Monterey, California. We reserved an ADA accessible room at a fancy hotel and confirmed they had the accessible features most important to me: a support bar next to a heightened toilet. After we checked in, we went to our room. There was a support bar next to the toilet but the bathroom was very tight; the huge marble sink was perpendicular to the toilet making it impossible for me to line up my power wheelchair for a transfer. Before heading to the main desk, we checked out the restrooms in the lobby on the Bay side of the hotel. These were not configured well for my use. We then went to the main desk and spoke with the manager. The only thing he could do was transfer us to a new room on the inland side that was not accessible but had and accessible bathrooms in the lobby. So every time I needed to use the restroom I had to go to the lobby. This would have to do. We ended up cutting our vacation short because of this inconvenience. Sadly, I was not that surprised, merely disappointed.

People need to do more to understand what accessibility means for all. And to live up to the law that guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life.