I was told yesterday that "maybe my body doesn't need that much sleep and I should listen to my body. The legs are signaling me to get up and do something." The same person told me "Drink a 5 hr. energy shot a half hour before I have to get up so when my second alarm goes off, I will have a surge of energy." ................4 people around her chimed in to say
that all of my medicines are making me old before my time because I slowed down a lot since starting them.
I put up with this crap everyday and though it comes from a loving place, it sucks.
I have to bite my tongue because I haven't the energy to fight it. I just say,
"interesting that you have that theory and tell them that I will talk to my doctor
about what you suggested." Then I go away steaming from both ears.
Another one that I was told by multiple friends at a temp job that I started is
that I am probably allergic to wheat and gluten products and that I need to
get that stuff out of my system with a good "flush" by drinking a solution
that will clean me out from the inside to my pores. Apparently taking a good
poop will cure me. haha. (it's not really that funny as they are very serious)
Someone bought me a kit to cleanse this weekend. I have it on my bathroom
counter to remind me to "Think before I speak"
A dear old man that I care about deeply gave me a bar of dial soap to
place between my sheets and swears by it that it's powers will combat
this terrible urge to move my legs. I think that he was referring to aroma
therapy. (Dear God, I hope that I do not stink and he was hinting)
I have dedicated an hour to do nothing but write down my worries as
I was told by clergy to do. I have a candle that I light to signal to the
family that I am in meditation to worry, to put down on paper every
worry that I can think of. ..It's done quite the opposite desired effect
on me. I find thoughts creeping into my head randomly during the
day that I wouldn't have normally thought about. None of those thoughts
are very pleasant. Sometimes I want to punch out someone for all of
the misery that comes to mind. = / (I would never do such a thing)
I have taken up volunteering. Sure it makes me tired especially if it is
heavy labor which I do give into when the need comes up... It makes
me wonder why I would work so hard, do so much for no money. I, myself
am hurting for money. Sometimes the only thanks that I get is a cool
drink of water or donated doughnuts which I can't pass up. =) .
Well Karen I think you know your body best and we all need sleep. An energy drink will send your RLS usually into over kill, just like caffeine does for many. Keeping a diary of triggers is quite sensible but not writing a biography I feel personally. Donoughts are full of sugar and not good too frequently as sugar as you know is one substance that is believed to make RLS worse. I didn't know this until I came to this site but I don't drink caffeine or take sugar because there is enough sugar in our food already, even healthy food like fruit. I don't think taking it out on others would be the right thing to do. Sorry you are having a bad time.
Between us, we could probably write a book of all the stupid but well meaning suggestions that our friends and family have come up with. If we had a widely known illness or condition, such as Parkinsons, people wouldn't say, 'what you should try is ....'. They would accept what the medical profession says. One lady once told me that all the illnesses we suffer in this world are a manifestation of our own personal issues and if we didn'd have them, we would be healthy. I was furious (especially as she said it with a superior, confident expression). I'm a nice person usually, but I wanted to say to her - I hope you get cancer or something else and then see if it is to do with 'issues' you have.
As for the donoughts, I'm with you on that one! Life is often too hard. As RLS sufferers, we have to get thro life with much less sleep than others and therefore perhaps don't cope with things as well as someone who'd had a good sleep. We have to do whatever we can to make life bearable. Yes I've put on weight this way, but when life is tough, (which it has been this past year) I don't have any will power or motivation to deprive myself of food. Plus it is normal for tired people to subconsciously search out food with a high sugar content in order to have more energy.
What sort of volunteering do you do?
Best wishes, Rosie
I do cooking and kitchen duty for funerals at church. It's a lot of work to
get other's to pitch in.
I love soccer, I played it growing up and into my early 20's until I was
having some issues with my joints and found out that I have RA. I
moved over to coaching 8-12 yr old kids. I did that until I turned 40.
Then RA put me out of sports forever, I could no longer teach soccer
nor could I share my moves with the kids who were full of good energy.
Once I took a year off, then I started serving on the Soccer Board. I
listened to the complainers who disliked the bi-laws of soccer...I
ran all of the concessions (almost by myself) for the 800 kids that
played soccer. I stayed on that for 4 years. I was also working full
time taking care of the developmentally disabled adults and teens
in group home settings.
I am just now working the soccer program with 7 other very
committed people in the office. There is a ton of paperwork,
politics and policies that are involved with the program. I never
dreamed that there was so much work to set that all up every year.
Setting up the teams to play other teams in the district is hard
to do. I schedule refs for every soccer game when 18 teams
are playing at the same time on different fields. There is so
much insurance work, equipment, maintenance of the properties,
uniforms, finding coaches that work for no money, parent
volunteers. I am now understanding how much money it takes
to run what I thought was very overpriced (it's not) soccer program.
I put in about 14 to 18 hours a week every week and don't get paid
a penny for it but I love soccer that much. *I think that in the UK it
is called football. =) Soccer keeps kids out of trouble, builds esteem
I'm sorry you are having such a hard time Karen, but I do love reading your posts! You come across the waves as a really lovely person! Strange really...I used to be involved with an American football team over here in the UK. Both my boys play for uni teams and my eldest now coaches. I much prefer it to soccer. Too many overpaid divas over here !
Hi, could you find just one person who understands what you are going through and just confide in them? It might help in ignoring the people who come up with all these ridiculous ideas. As for the medication making you feel old before your time and tired, well what do they think years of sleeplessness has been doing? i think people are very uncomfortable with others suffering something they don't understand, and perhaps they say these things just to make themselves feel better. You do such a lot of good stuff for others. Try to keep confidence in yourself. Perhaps you could suggest that these 'friends' talk directly to your GP who may not have heard of these 'remedies' and would be more than pleased to hear their wisdom ! All the best.
I also love your posts Karen, you are a gem of a lady. Also a hard worker, doing a unpaid job for a sport you love. We do call it football here in the UK. It does keep the kids occupied, stops many kids from going off the rails and good exercise for them...They work as a team, so good for them to see what they can do by doing that.
You have your friends here for you to let your thoughts out to, we KNOW what it all feels like, you get the support you need when all others are offering their so called "cures" for you. We know different....but yes watch those donuts, sugary stuff can have a bad effect on RLS.
My Doctor told me i don't require as much sleep as i think and i should go for a long walk. He only gets a few hours sleep each night. I have had this since a young boy. Even when i played top level Rugby and running marathons i still got it. As i put in my profile RSL seems to be something non sufferers have an instant remedy for although they have never heard of it. I had a sickness review meeting recently and the person from Human Resources laughed when i explained RLS. I just got up and walked out and still feel as frustrated with life as ever. I wish you all strength to try and cope and hope that there will be more awareness regarding RSL
I was never aware that sugars cause RLS to act up worse.
I go to the website suggested by Nightdancer. I missed this
one thing. I do love candy a lot. I try to avoid it if I can because
I lost all of my extra weight that my medicines caused me to gain
thanks to taking Paxil. (It wasn't so difficult honestly) Paxil
controls my perception of pain and also treats my very disabling
panic attacks or anxiety. (extremely well) The side effect of
Paxil is to lose weight unintentionally.
• in reply to
Try to cut back or cut out the sugary stuff, see if it makes any difference...it doesnt make any difference to my RLS, so i am lucky that i can have sweet stuff, but i dont over do it......just in case....
Peterpillpopper- What a dubious name. I do love it. =))
If I had been at that meeting with you, I would have slapped them
over the hands with a yardstick like the nuns did to my mother when
she went to school and laughed inappropriately.
You described so very well what feelings I had when I was told to take
a good cleanse or that I should listen to my legs and do something useful
rather than lay in my bed crying from not having sleep.
Just last night my husband took me out to see a band late at night.
I felt faint a few times and my body went numb for fighting to sleep
the night before and maybe even the night before that night..sure
was a waste of our time to listen to my legs. I couldn't really be present
feeling like that while my husband enjoyed good music and wanted
for me to dance with him. I was pretty much "hanging on him" to
stay awake. He was a great sport about it so it's lucky for me.
Yikes - Peterpillpopper is what the girl at my Chemist calls me. What you describe is very familiar and shows how RLS can disrupt your life. I went out for dinner with family this evening celebrating mum in laws 90th birthday. As soon as i sat down my legs started. I spent most of the evening outside the restaraunt punching my thighs and popping in and out to eat. Most of my family understand but i reckon other diners must of thought i was a chain smoker. Hang on in there Yikes.
Karen You must have the patience of a saint to listen to all that ridiculous and patronising advice and not react. I very rarely talk about my RLS as the reactions I get from people who know nothing about the subject are extremely irritating and very unhelpful, and after a sleepless night, I know I won't be as patient as you. Well done for providing voluntary support to the youngsters, it's a really valuable thing that you're doing and I hope you're appreciated
Halli
Halli, I react to people that say "What's wrong? You look kind of tired lately"
That's what starts every single conversation with people around me. I lost
my only grandson to SIDS and that's why people are constantly checking
in with me. I guess in one of my weakest moments, I let it be known that
I am having RLS and it's wrecking parts of my life that I used to hold dear
to me. People have suggested that I do not vacation much or that I no longer
go to the theater, play bingo, do crafting as I once did. They thought that I
was in some sort of depression for not doing those things.
I wish that I had never even brought up RLS during that hectic week of
funeral, visitation with survivors... People are coming out of the woodwork
to offer me suggestions, give me products, books, and are trying to get
me to relax and get some deeper sleep. I have pills, vitamins, Audio Books,
musical CDs from people who really care about me, want to see me "Turn
the Page" on the horrible things that happened to me when my grandson
passed away, or they found out that I am suffering RLS.
I have more friends than I ever thought that I did. It all comes from a loving
place and their intentions are appreciated...but I am now thinking of
how I can tell them that enough is enough here...
I love soccer. I always will but now I am 46. My body isn't what it used to
be... I love volunteering. I love kids of all ages. I will do anything to
keep them fit and healthy.
Karen
• in reply to
I’m so sorry for the loss of your grandson. My heart goes out to you and your family.
Tell the rest of your people at work to go home and take a "cleanse", too, to clean out their brains! I know you get no support at home, so tell them that "SEVERE SLEEP DEPTIVATIOPN" and not being able to sit still DO make people old before their time. IT is the lack of sleep, not meds. I would tell them what my "legs`are telling me to do", and would put both my feet where the sun don't shine! Good use for your legs. It is like people`saying legs `are SUPPOSED to move! Rubbish! not like this! Doctors even are saying that as well as the USA RLS foundation!!! grrrrrrrrrrr Legs and phantom body parts are NOT suoposed to move like this. Hope today is better. I have a list of what NOT to say to an RLSer, and your family and work friends have said just about ALL of them.
Nightdancer and the rest of you are Godsends to me for the lack
of support that I get on this issue. I just don't have the "Voice" to
shoot back another rude comment to them Oh...how I wish that I
had the nerve.
The "Old before my time" cut me so deep. I was standing in front of
my baby grandson's casket when I was told that...
I feel like maybe if they see me cry because of what they said then I
will make my point but my soul won't allow me to and I am hearing
the echo of God saying to turn the other cheek and pray for them.
I always do that rather than cause any conflict or pain on others.
Whoever said your legs are moving to get you up is an idiot. To those people, I say have a bad case of RLS for a week and see how you feel. I have never heard of anything so stupid. RLS IS REAL.
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Revised version of the list of things to try.
Tried EVERYTHING, and now...
Sticking to RLS
Things have gone a bit crazy
