Guest Blog
Guest Blogger: Wendy Lowden ~ This hell we live with...
Thursday, July 17, 2014
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 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)....live 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!!!!
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
Canada
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