Guest Blogger: Wendy Lowden ~ This hell we live with...

THIS HELL WE LIVE WITH..... When I was asked to do a blog entry about my WED/ RLS I wasn't sure where to start.   It is not very of...


When I was asked to do a blog entry about my WED/RLS I wasn't sure where to start.  It is not very often I allow myself to spend this much time thinking about this Hell we live with.

The sensation in my legs has been my companion for as long as I can remember.  When I was little I used to cry and say my legs “tickled” when I went to bed and my twin would complain because she could hear me moving them from across the room.   I live with “The Mystery of the Tickly Legs” (a mystery even Nancy Drew couldn't solve, until I could stand it no more and my husband encouraged me to try to find out what it was. I finally found a doctor who listened and he sent me for a couple of sleep studies.  What did they say then?  “You have something called Restless Legs Syndrome (RLS) with it, we can't do anything about it”  I was just happy it had a name.
It was about that time (because I think we all become more aware when we know we suffer from something), that I realized I had inherited this from my dad, who was always shaking his legs when he sat down.  And then I realized and understood that is must have been why he an mom had twin beds...she couldn't get any sleep with him beside her.
I coped by starting a Support Group up here in Hamilton, Ontario Canada and it was a huge success....until Mirapex and Requip showed up on the scene, and everyone seemed to think they were “cured”.  It was truly frustrating for leaders....BUT I met some of my closest friends (and one closest to my heart), when I was asked to join the Foundation and be a rep. on the Support Group Advisory Board.  It was there I learned about some triggers, although I have never really identified one for me.  I used to cope by having a scalding hot bath in the middle of the night when my legs were bad, but Mirapex has helped enough that I don't do that anymore. 

I am blessed to live with an totally understanding DEEP sleeper.  No matter how much I am up or down, he doesn't notice, so we are  still be able to sleep in the same bed.  I may be rambling a bit, and I'm sorry, but as I said, I don't allow myself to wallow in this too often....I guess I needed to.  You see, I am 57 now as it sure isn't going away. 
My WED/RLS has always been predominantly on my left side, and I feel it all the time in my leg....and even worse, in my left arm.  I have not found anyone I know who feels it in their arms, but I sure do.  There are many times the arm is worse than the leg.  I take my Mirapex like a good girl, sometimes even remembering to take it early enough so it helps at bedtime, but I know that I will always be on it or something else to stay sane.  I stretch a lot and stand up at meetings a lot and do weights with my arm because sometimes by wearing it out it gives relief for a time.

Do I think it's fair that I have this?  NO! 
Do I wish it would go away?  YES! 
Do I wish I never had it?  NO!  Surprised? 

Well you see, without it I would not be able to understand others with it, nor would I have met my wonderful empathetic friends who I can't imagine life without...BUT IT CAN STOP NOW ALREADY!!!!
As most people do with this Hellish thing living in us, I am always, always tired...tired physically, tired mentally and tired of trying to explain what it feels like to those blessed enough not to know.  I hate it, I resent it, and I am terrified that it is going to only get worse as I get older.  Is there enough Mirapex in the entire world???  When my dear dad lay in bed in his last days, he was on so much morphine that he was unconcious...and his legs still twitched under the sheets.  Is this what is in store for me?  Is it?  It terrifies me.  I have made my husband promise that if I die from a terminal illness, he must make sure I get enough of whatever I take then, so I don't feel it anymore.  PLEASE!!!

What kind of conversation is this to have?  I mean really????
To anyone who has WED/RLS and understands what I am saying tonight (I am going a little nuts because when I talk about it I can't ignore it), I understand and there are so many of us who do.  And I ask this of you.... Talk about it, don't hide it...Let people know why you are tired all the time, or move all the time.  If they laugh or don't understand...Nuts to Them!  I understand and many others do too and only by sticking together can we make the world aware.

I pray for patience...I pray for relief....I pray for a cure, and I will keep praying for them until all are found.  Let them be in my lifetime!!!

Wendy Ann Lowden
Corner Brook, Newfoundland and Labrador


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