Oh yikes....I don't blame you one bit for having the biggest pity party ever....I just wish I had the words to help . I can hold your hand across the distance. If you ever want to moan ....I can listen......sending you love, cuddles and everything I can think of. Stay strong!!!!! We are all here for you x x x x x x x x x x z z z ........kisses and a few hopeful z,ds x
No news for another day. My family and extended family
is planning on sitting in for the news of my cancer report.
RLS is acting up so bad because of the sugar that I consumed
earlier in the day. Apple pie was calling my name every few
minutes until I gave in and doused it with Cool Whip. (Yum)
I managed to get some sleep prior to this bout of RLS.
I dreamed so clearly of being in a fight with my mother-in-law
for talking about me behind my back. The problem was that
I had no voice for her to hear so I had to whisper as loud
as I could.
My mother in law is two faced to people and discusses
personal things that are meant to be a secret with others.
She talks and talks me down for this RLS and medical
problems besides this problem. I get picked on for having
an off day of housework, cooking, taking care of my personal
appearance.. *I get down enough on myself without her help.
She's a bit angry with me that my husband is the only bread
winner in this house. Poor Todd has to work so hard... and
his wife sits and watches soaps, eats treats all day long.
That's what she thinks about this RLS...that it is just an excuse
to be lazy... She keeps telling me to get back to my job and
don't take naps at all during the daytime so I sleep at night.
(screw that, I rarely take naps)
All of what she thinks is totally wrong and she thinks that I
don't hear from others what she says about my Bogus
RLS and sleep deprivation.
She always tells me that she loves me and she worries. I can't
make sense of her judgement.
Funny kind of love going on here Yikes, seems very selfish to me, it's so hard to get across to people just how much this illness puts us through, i wish we had a way to make them feel what we feel, pipe dreams i know,
I hope your cancer report is the very best it can be, huge hug's xx
My mother in law heard the doctor that serious crap is
going on with my body but it's not, not, NOT Cancer (yay)
MGUS makes it 40% higher risk than the general population
for bone cancer. (scared to even say that aloud) We are
perusing another kind of treatment to fix those problems.
I would love to say a lot of bad things about my mom-in-law.
I never felt loved by her. I always feel judged because of
the way that I cook, keep house, take care of her son and
children. She considers me sickly with RLS, not really
understanding what it is or it's seriousness.
My oncologist belittled the condition today by telling me
that my problems with not getting enough sleep are purely
habit. He said that my body is following a routine that I
created by staying up. He thinks that I should NOT get out
of bed even if RLS is bad. He said that eventually I will
fall asleep if I stay there. I am not to drink any kind of
liquids or food past 6pm ... then there should be no reason
to visit the USA bathroom, UK toilet.. whatever you call it..
He would like for me to quit with the medicines because
they are hard on the body and they produce no results.
In his words, it's a matter of re-training my body to sleep
at night.
I want to kiss him for telling me not to worry for the next 3
months about cancer but want to slap him for belittling
a condition that needs to be taken seriously.
He did say the exact same thing that my mother in law said.
Habit.
Right about now I wish that my mother-in-law would walk
through my door. Dinner is in the oven, my house would
pass the 'White Glove" test. She never shows up on
a day like today. (darn it)
One thing that was said by MY own family was "Karen, don't
become a junkie on drugs" Ouch, that hurt me, a lot. = /.
I asked for Tramadol. My request was denied because RLS
Some of that makes my blood boil! So much of our lives is dictated to by RLS. We would love to sleep at night and feel good the next day but it just doesn't always happen. People who do sleep, take it for granted and have no idea how it feels to be sleep deprived day after day and still do all the usual chores.
I think RLS is v hard to understand for non-sufferers and my mum would never be convinced that it wasn't partly brought on by something I was doing. Yes I sometimes have bad sleep patterns but it is pointless trying to come to bed if RLS is already buzzing in my knees or elbows.
If I have enough energy I'll do ironing or make my kids sandwiches for the next day when I can't sleep but if I sit down to watch TV, I don't always turn it off when the RLS has gone and I'm half way thro a good programme and go to bed! I regret it the next day when I'm tired though!
My face is flushed when I read your moms thoughts. I've
heard that as well. I get ripped on for having to walk during
a movie or a seated event. I can concentrate on little more than
finding a spot to settle down my legs. Sometimes I miss the
entire plot. On car trips, I've been told to just "deal with it"
by family members who are always in a hurry to get somewhere.
The best one that I ever heard was from my own mum who
told me to put that energy to good use....I know that implied
to work harder, volunteer.. she calls it nervous energy.
I live where there is an abundance of fresh water lakes. Our
family loves to go fishing. I love it with my heart and soul but
I have to miss out or suffer immensely while sitting in the boat.
Catching fish is constant..at times. My legs often win the battle.
I end up doing squats in the boat and then I get told that the
fish won't bite cause I'm moving the boat. By the way, that is
never true of catching perch..a pan fish that is very popular
over here. They are attracted to noise.
I have caught a movie or two at night. I have to record the ends
because my legs are at another party.. Sleeping later into
the morning would be ideal..my legs seem to settle down at
Yikes...I am so so happy to hear your brilliant news!!!!!! Yippeee !!!!!!!
On the other note I am happy to say my family are pretty understanding but my other half gets pretty fed up with it all . We usually go to bed at the same time but never wake up together . Within 30 mins in bed my symptoms will start then I'm up finding moveing stuff to do! I might crash on the sofa in the early hours if my codeine works. I do sometimes wonder if it could be an unconcious habit at times. On the rare occasions I have a symptomless evening i think deep downloadsit will start soon so I am waiting for it ....so it does . If that makes any sense! Sending you joyful wishes!!!!
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RLS is ruining my life!
Buprenorphine - paired with sleeping tablets, UK
My GP prescribed Amitriptyline, not sure why...
My late Mother & RLS
