Restless Legs Syndrome Foundation Blog

Several years ago, I traveled 250 miles to visit my son’s family for a weekend to attend my granddaughter’s dance recital. I made it a practice of never missing one of those kinds of things. The program was held in a city auditorium. My wife and I sat in seats on the outside aisle, as we do most everywhere, so I could get up easily without disturbing other folks. True to form, after about 40 minutes of sitting still, my WED/RLS begins to take over. Our granddaughter was still further down on the program.

The side aisle was wide so I could easily get up and move over to the side near a door with a nice tall plant so I would not disturbed anyone. So I had thought. Then there was the usher. A tall nice looking lady, with a military presence, saunters up to me and whispers, “Sir, you’ll have to sit down. This area can only be used by persons in wheelchairs.”

“Ma’am, I have Restless Legs Syndrome and I’m unable to sit any longer but I want to see my granddaughter dance.”

“Well, you’ll have to get a wheelchair if you don’t want to sit in a seat.”

“Ma’am, I couldn’t even sit in a wheelchair.”

“Well, then you’ll have to leave. That’s the rule.”

Whereupon she ushers me out the door – all of which was more disturbing to the people sitting near my wife than if I’d stood and walked around the whole time. I stayed close to the door out in the mezzanine and was able to hear the music and determine that it was near the right time. Luckily, a man came out that door at the right moment and in I slipped. My granddaughter was on stage doing her thing. But before her part was over, I felt the presence of the military again. I said, “Ma’am, that’s my granddaughter up there and I’m staying for her performance.”

The lady left, but before my granddaughter’s act was finished, the usher returned with reinforcement and I had to duck out the door fast. I was miserable with my afternoon attack of WED/RLS, but their misunderstanding and refusal to listen made me even more uncomfortable. And this is not the only time that a similar thing has occurred. The misery of WED/RLS.

I remember when I was first diagnosed with Willis-Ekbom disease (also known as restless legs syndrome). I just started 6th grade, probably one of the most awkward times in a person’s life. Even though I felt relieved that the condition that I suffered from actually had a name, and that others had it too, I also felt conflicted – how could I explain to my peers why I sometimes nodded off in class when I could barely explain what WED/RLS was? I was also afraid that others might judge me for having a sleeping disorder, especially if they didn't know what it was.

As someone who has WED/RLS, I am faced with decisions every day that could potentially affect my sleep. Keeping a regular sleeping schedule (i.e. going to bed and waking up around the same time everyday) has been a significant help for me, especially while I was in college. For example, I knew that I could never pull an all-nighter (not that anyone should anyway) in order to cram for a test or finish a paper. I avoided late afternoon classes and too many classes in a row.

Personally, I like to think that living with WED/RLS is similar to living with a condition like diabetes – it might require changing your lifestyle a bit in order to allow you to live a normal life, but the important thing to remember is that it is doable. After I was first diagnosed with WED/RLS, I had to make some adjustments in my lifestyle in order to have a normal life. For example, I am more sensitive to caffeine, so I cut caffeine out of my diet (for the most part) – I don’t drink coffee or sodas. My only weakness is chocolate, which contains some caffeine, but as long as I’m aware of when and how much of it I consume, then I can sometimes avoid not sleeping well.

Having a positive attitude about living with a condition such as WED/RLS is another important thing that has helped me. I could sit around and mope all day letting my WED/RLS dictate my life, or I could take charge and live my life, with the awareness of how I can prevent having a sleepless night. WED/RLS is certainly not the worst thing in the world to deal with you – just need the right perspective.

The subject of sleep is something that I find interesting (for example, I always enjoy reading tips on how to get better sleep or why we dream and what they mean), so it’s kind of ironic that I have a sleeping disorder. I also believe that sleep is one of the most underappreciated aspects of life. So many important things happen when we sleep in order for us to function properly the next day. It is only when you or someone close to you suffers from a sleep disorder that you see how much sleep deprivation can affect a person’s life.

3 important life lessons I have learned from living with WED/RLS:
1. Learn to be your own advocate – don’t expect others to stand up for you.
2. Be proactive – no matter what you are doing, making sure you will be able to get quality sleep is important to take into account, so plan ahead whenever possible.
3. Every person must deal with some challenge – whether it is medically related or not, and whether they are willing to share it or not. Everyone has their own cross to bear in life.


About the blogger: Last May, I graduated from college with a Bachelor of Arts and I'm planning to attend graduate school in the fall. In my free time I enjoy reading, watching movies, doing arts and crafts, going to concerts for bands I like, and spending time with friends and family. - Ali Dzienkowski

References

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I traveled by air to most of the national WED/RLS Conferences and Support Group Advisory Board (SGAB) meetings which were held while I was a Support Group Leader and member of the SGAB. One conference was held in a hotel in Los Angeles, CA. First, I had to fly from Jacksonville, FL to Charlotte, NC. It wasn’t bad. However, the 4 hour flight from Charlottee to Los Angeles was criminal. I told the flight attendants that I had requested an aisle seat because I didn’t expect to be sitting in it very much. Instead, I would be poking my legs out into the aisle often because of my WED/RLS. They understood, so they said, and asked me to just watch for other people in the aisle. I didn’t want them to think I was some kind of terrorist, spending time in the restroom to assemble a bomb or something. So during the flight, I spent a good bit of time walking up and down the aisle and standing in the galley with the attendants. By the end of the flight some of the passengers and all of the flight attendants were on a first name basis with me.