Home » Me and My MS Fatigue!

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Fatigue is typically the result of working, mental stress, jet lag or active recreation.  It can also be from boredom, disease or a lack of sleep.  It may also have chemical causes such as poisoning or mineral or vitamin deficiencies.  The sense of fatigue is believed to originate in the lower brain.  As for me it's because I have multiple sclerosis.  That is a common symptom for people with MS.  For all practical purposes I can no longer walk but my fatigue is actually more debilitating than my lack of leg strength!

The first time I remember getting hit with a wave of fatigue was in 1991.  This was just before my diagnosis.  A bunch of us went to Chippewa Falls, WI for a three day country western festival. There were quite a few of the top country singers at the time performing that weekend.  On the way to Chippewa Falls we stopped at a strip mall.  One of my friends had to purchase something at a hardware store there.  I got out and went into the store with her.  I walked around the store a little and then all of a sudden I felt weak and I had to sit down.  I remember sitting down on a display case.  I felt the mannequin kept staring at me. 

 

I just felt weird!  I didn't know what it was?  My legs were weak and I broke out in a cold sweat.  I sat there waiting for my friend for about 15 minutes and then she was ready to go.  I felt a little better so I got up and walked back to the car.  I wasn't driving so I laid down in the backseat of the car and closed my eyes.  I can't remember now if I fell asleep or not but when I opened my eyes I did feel better.  I was sleeping in a camper that night and suddenly the entire right side of my face went numb.  This had never happened before to me.  It was just proof to me that something was not right with my body.  It was just a preview of things to come. 

From 1988-1993 I worked hard trying to get my carpet cleaning business going.  Carpet cleaning is a physical job so I was in pretty good shape.  I'd clean the carpet in a restaurant at night until sometimes 3 or 4 in the morning.  I'd sleep four or five hours and then I'd get up and start doing the marketing for my business the next morning!  I used to come home at lunchtime and I can still remember lying down on my floor by my TV set and dozing off.  It wasn't a deep sleep and it always made me feel refreshed when I woke up so I didn't mind doing it.  I always laid by my TV set because I didn't have a remote control for channel changing.  I had to do it manually.  How barbaric!  lol  I guess this was the ice ages for TV!  Anyway, after my little siesta I'd collect myself and then head back to my office.  I did this everyday for about four years.  It seemed weird but I had a physical job and I probably wasn't getting enough sleep at night because I was cleaning carpets and going to bars.

I learned how to country western dance in October of 1989.  I didn't clean carpets too often on the weekends so when the weekends came I wanted to save all my energy for drinking and dancing!  I would take it easy most Saturdays so I'd be ready for the evening.  I would just lie around waiting for 7pm to get there.  I remember thinking to myself many times that just lying on the floor dozing on and off all day didn't seem quite right.  I should be doing something instead of just wasting my Saturdays watching TV.  I also remember thinking that I was kind of lazy but I worked hard during the week and justified it by saying I was a grown man, single and if I wanted to lay in front of the TV all day I could do that!  In 1990 I was 32 years old and I thought I could spend the weekends any way I liked to!  In the summer I always explained my tiredness on the heat and too much work.  I remember telling people that I didn't care for the hot weather which in hindsight was true.

Looking back I had fatigue problems all through the 90's ranging from slight tiredness to falling asleep at a moments notice.  I was diagnosed in 1991 so I knew that fatigue and heat were symptoms of my new disease.  After I got married in 1993 I thought about my little carpet cleaning business and decided to sell.  The water was heated to about 220 degrees and lugging hoses in and out of buildings seemed exhaustive to me.  I thought I've got a major disease now so I should take it easier.  It took awhile but I finally sold my carpet cleaning business which was my accounts and my steam mounted carpet cleaning van and all the equipment.  After splitting up the money with my silent partner I didnt have much to show for five years of hard work but a world of experiences that are still with me today.

From about 1993 until 2000 much of my fatigue was due to the fact that I never slept a full night of sleep.  Not even four hours!  In 1994 my bladder became a major problem for me.  I would stop drinking liquids around 6pm so I wouldn't have to urinate so much during the night.  Even doing that I'd have to get up at night and urinate two or three times.  And I don't mean a regular urination like a healthy man would do.  I'd have to sit on my toilet and coax the urine to the end of my penis.  I'd sit there for 15 minutes waiting for my urine to come out.  I would completely wake up while sitting there.  I'd go back to bed and it would take another twenty minutes to fall back asleep.   

 

Many times I would finish urinating and five minutes later lying in bed I felt like I had to go again.  I remember many times falling asleep on the toilet.  I had a tile floor and John Lennon (ex Beatle) always visited.  You can laugh but to me the design on the floor tiles with just a nightlight on in my bathroom made the shape of John Lennon's face.  I was probably in some kind of sleep deprived haze most nights.  My eyes would be blurry from sleeping but John would be there every night!  lol 

 

I can laugh about it now but back then a trip to see the john had two meanings for me.  lol  It was frustrating and I'm surprised I was able to get any work done during the daytime.  But I did my telephone work from my home and made some money to contribute to my little family of my wife and me.  In February 2000 after putting up with this night after night for 7 years I finally went in to see an urologist about my frequent urination.

The problem wasn't that I was drinking too many liquids during the day but my bladder wasn't fully emptying.  I'm talking too much about my bladder problems and you can read about those in my bladder article but that led to much of my fatigue.  So in 2000 two things happened that changed my life forever.  The first is the urologist showed me how to self catheter (I explain more in my bladder problems article) and the second is that my neurologist prescribed a new drug for people with MS fatigue.  She prescribed a pill called Provigil.

Provigil is made for narcoleptics (people who fall asleep anywhere).  Many neurologists were beginning to prescribe it for MS fatigue in 2000 when I started it.  I would take one pill per day and by the third day I was so wired and awake I didnt need to take any naps.  I felt like a normal man again!  The Provigil kept me awake during the day and the self-cathetering helped me get a full nights sleep.  I would go to sleep about midnight and sleep till 6am.  It felt wonderful! 

 

After not getting any sleep for seven years I was now sleeping the whole night through.  I finally felt so energetic and alive!  I'd missed so much the previous seven years but I didn't care!  Using a catheter to empty my bladder and taking one Provigil per day and I was starting to feel normal again.  I felt so good I decided to go out and get a job.  I love to work and now I finally could do that again.  I was still walking fairly well at this time!  It felt good to make some money and to feel so energetic!  I was very happy!

Now I find myself in 2007 and I'm trying to find my place in the world as a disabled man.  I'm selling my e-book and writing articles for the internet as well as being an affiliate for other products.  My walking left in 2007 and I'm either riding my scooter or using my walker to get around my little town.  My fatigue has returned like it was in the mid 90s.  I still take Provigil for my fatigue but I'm on Medicaid and the insurance company will only pay for one pill per day.  It wears off around 10 or 11am each day!  I find myself fighting fatigue again on a daily basis like the old days.  I could really use two Provigil pills per day and my life would be a little better but who wants to fight insurance companies!  I know that I dont!  The consumer always seems to lose when fighting insurance companies.  Somehow that doesn't seem right.

I have a website now and work with three insurance agents in nearby Fargo.  I set up appointments for them.  I stay busy which is what I want to do!  The busier I am the less I think about my health.  My son started kindergarten in August of 2007 and I pick him up one day per week and I spend a couple of hours with him.  He's also started staying overnight with me on either Friday or Saturday nights.  We can draw on paper, play a sport, watch TV or drive downtown.  It really is a good life and I'm loving it.  Sometimes I think to myself that I have a major disease and I should feel sadder for my situation but I don't.  I've tried to simplify my life and I think that I've accomplished that!

Jon Wegner is a 49 year old resident of a small town close to Fargo, ND.  He's lived there for four years after being lifelong Minnesotan.  Jon has multiple sclerosis and now rides his three wheel electric scooter to get around.  He can be seen scooting all over his little town daily.  Jon's website, e-book, FREE newsletter and articles can be found at www.mymsbookandnewsletter.com   Sign up for his monthly newsletter there.