RLS documentary

Hi I've been contacted by the film company I gave a brief run down on my RLS at moment it's hell, by email, so I'm now apprehensive about this, I so want this condition to be out there so have I to be strong, hope you lovely people will help me through this. Been thinking about going on hunger strike I mean it's been in mind for a while! thinking if it may not benefit me at this time, but they might listen to you all if I did it ( have just read Suffragette ). WILL be chatting with Laura later today.

will keep you posted :)

Hope to able to be help to all you wonderful people out there

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13 Replies

  • Well done for taking part in the tv programme, you and a few more will be keeping you company. :)

  • Hi Elisse I've just got off the phone with Laura she sounds lovely, lots of ????? was difficult to chat not a way (skype) we now going correspond by email today and by phone tomorrow. So is there anything I should bring into this? need to do a list :) I'm in France 8 more days then back in UK, LETS hope this works for all by getting the word out there !

  • Hi maesllan5, cant help you with that question, i am not one that is going to take part. I am sure you will be informed by the production people what is needed or not needed for the programme. :)

  • I was contacted also, told teh lady all the ins and outs of my RLS but have two, (well two for them one for me) problems.

    One is really not a problem for me - the legs are almost completely under control with the drug treatment I'm on, (yeah :) ) and two,

    the good lady wife wouldn't be keen on cameras in the house.

    I told them this but asked to keep in contact in case I may be able to help - like maesllan5 I feel that people should know how bad this condition is.

    On the subject of Hunger Strike, we've had a few of these in Ireland, (including one where the people on it put on weight!!! :D ), anyhoo they are not pleasant, (and not really effective) by any stretch and even those who have survived, (families took them off the protest and they were fed), were left with life long suffering.

    IF you want to get a headline get to a TV studio and take it over, much more publicity without killing yourself or ruining your health.

    Stand up at a high profile court case strip naked and have RLS painted on your body - a few mins running around like that will certainly make news, (can also be done at soccer gatherings etc).

    There are a number of extreme ways of getting attention without hurting anyone if you are happy enough to get some criminal charges, (a lot better option than death imho).

    Good luck and stay safe whatever you choose maesllan5.

  • :) love it, I am thinking of trying radio and tv news around the same time as this program goes out? me stripping with my body would get attention!

    My partner is not so keen about being involved either, but he's coming round to the idea because off how I'm suffering since a long long while.

  • RLS awareness is key. Even if all the people working on this only reach a few people, it will have done it's job. ;) years ago, about 7, I worked on a project thru Time, Inc and their health web site. we did several interviews in New York City, several members of my email group (before FB groups) took part, and their stories and mine are on the web site and in videos. If anyone is interested it is all in the RLS section on health.com Good luck with this one! make sure they know what the sleep deprivation will do to us and our brains and bodies.

  • Laura has asked that ALL details of the production,including the name of the production company and the channel be kept private for now. I have therefore amended your post to remove the name of the production company.

    RLS-UK will provide ALL updates on this programme, as agreed with the production company, to ensure consistency so please can we ask that any updates ONLY come from the charity. This again has been agreed with Laura to ensure we get the very, very best out of the programme - this is such a rare opportunity and we want to ensure absolutely nothing goes wrong. Your cooperation on this is very much appreciated.

  • OK got that!

  • Maybe Laura should have explained that to those who have put their names forward, then there would be no misunderstandings.

  • Thank you for your feedback, which I will pass to Laura.

  • Hi maesllan5, I am so sorry you are having such a terrible time of it , thankyou for volunteering yourself for the programme, its very brave of you! I am thankfully doing well RLS wise at the moment otherwise I would volunteer too.I hope you soon find a treatment that helps but PLEASE do not harm yourself by starving!

  • Thank you sooo much for doing this on behalf of all of us with RLS . I really appreciate it !Be yourself and speak your personal truth about this condition and you'll be fine. And I know it must be scary- and that's why you are really courageous. Lots of luck.xxx

  • I think an excellent point for SOMEONE to make, since I am in the US and cannot participate, is that many doctors who are not "up" on RLS, think that we are not sleeping because we are depressed. When in fact, it is the severe sleep deprivation that depresses most of us, not the other way around. Some of us have legitimate depression issues, BEFORE the RLS. But when RLS begins, and we start logging years of sleep deprivation, that is when most us start the "depression era" in our lives. Kind of like the chicken and the egg. ;) What comes first RLS or depression? USUALLY RLS and sleep deprivation is first, then we get depressed. And, the fact that many doctors want to treat the depression, thinking it will make the sleeplessness go away, and in doing so, may give us meds that RLSer's can NOT take (99% of us) and they will make the RLS worse.

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