Is this more than a glorified chat room?

I am sorry, i came on here looking for serious advice and help with living with RLS. With the exception of Ellisse no response..nothing. Thank you Elisse

RLS is affecting my life in a big way and i am sorry but when i see the change is design of the website getting more attention and (one member) posting a "I am leaving" message with the same outcome I have to ask myself.. is this a serious attempt to help people with the issues of RLS.

I have a very good specialist who advises me medically, so I am not after deviating from his prescriptions.

What I do need is how to cope with getting increasingly tired, to the point that I have had to find somewhere to sleep at work. Advice on how to manage the depression that goes with not getting all the chores done and the "to do" list getting increasingly bigger, because I am exhausted. But most importantly is there a president set for whether RLS is classed as a disability in the workplace and if so are we covered by the Equality Act 2010.

What experiences and tactics employers have used to try to terminate contracts due to RLS.. and what are their right's and responsibilities.

My employer is taking the line that it has tried to make suitable adjustments but not been able to.. they are now putting me on a one month period to find redeployment ( offering me interviews in Ireland, London places that cost me a fortune to get public transport to), they have advised after this one month period they will then terminate my contract under the capability policy.

The reality is that the reasonable adjustments have been giving me work that is so mundane that under different circumstances it would be considered harassment, such as replacing grub screws in hand rails.. over 1000 of them, doing plant inspections (walking around the same bit of plant every day looking for non existent defects!) or simply giving me nothing to do. - I am a fully qualified Electrical and Automation engineer.

They were gracious enough to allow me to flex my hours for a while, but then a new boss came in and decided I had to be at my work station by 7:00 a.m. - I travel to work by train and arrive on site at 7:02 - this wasn't good enough. So i pointed out that this would mean me catching an earlier train and having to get up at 4:45 every morning.. clearly not good for my sleep.

So for the time being I am now off work with what the Doc calls "Low Mood"- But a soon as I return I know I am looking forward to being unemployed.

Paradoxically a Colleague of mine who injured his shoulder and required extended time off, was given phased return to work and some how the company managed to find him stimulating and interesting work to do..

Probably because he injured himself at work! Or maybe the physical is more accepted.. tiredness is still seen as a something you should just get on with!

But this is what I had hoped to get out of this site.. useful and practical shared experiences and advice, but I am sorely disappointed..most of the postings are of the "tea and sympathy" variety. Fine if you want a pick me up for coping with a short term issue, but not much good for coping with the side effects of the condition.

I am lucky, I have an understanding wife, but I think the rest of my family do not understand just how debilitating this condition is, the urge to sleep isn't just tiredness for me, it is compelling and like i have been drugged. I just have to sleep.

There is a lot of prejudice and ignorance about RLS, having inane dialogue.. or more often monologue about what you had for tea isn't going to help the cause.

Is this site a place to seek advice or shared experiences or simply a chat room.

Surely there are lawyers, doctors, specialists employers, HR experts out there who suffer from RLS..can this site encourage these people to be available for advice..?

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  • Hi, Vince, im sorry for the trouble your having at work, ive had some issue's like this myself, i dont comment often on here, but i do read all the comment's each day.

    I find it helpfull, the info we get, but i also like some of the more lighthearted posts, it help's to lighten thing's up, life's hard enough as it is, so a bit of freindship with other RLS sufferer's goes a long way with me, help's to get me through the day.

    I dont know about the admin getting lawyer's on here to help us with issue's like your's, with work, i think that would be expensive to say the least, but i think you really need to get that kind of help sorted out quickly, im lucky as i have family to help me, and no longer work, one less stress for me thank goodness, but we do all cope with thing's in our own way, and this site does help a lot of us, with either med issue's, or just for a place to come for the "tea and sympathy". Personally im more than happy with it, i wish you good luck with your work issue's i really do, but we all have different way's of coping dont we.

  • Hi Vince, im also sorry your having work issue's, but since the admin did the new layout, theres not many people coming on the site, hopefully this will improve soon.

    Some of us come on just for a chat when we cant sleep, i dont see anything wrong with this, and i also think it would be expensive to have a lawyer here to answer queries like your's, i to wish that was possible, as a lot of us could do with legal help, for work and benefit issues, that would be great, i hopw you get your issue's sorted ssoon, i can see it's very worrying for you, good luck Vince, sorry that most of us cannot help with your legal issue's

  • Sorry Vince for the trouble you are having. I'm afraid I have no knowledge to help. Have you tried contacting ACAS. I think that's right. I've had trouble at work over a different issue and they do independent free conciliation. Google them .

  • Hi Vince, did you get in touch with Citizens Advise, on your work situation. Is the patch working for you, so you can sleep at night. Are you getting any side effects, as in its making you sleepy in the day. Depression comes from this condition for many people. I was hoping the patch would be working for you and you are sleeping, just getting sleep at night is enough to lift your mood somewhat. Regarding whether RLS is classed as a disability i dont think it is, that is why i said about the C.A.B they can advise you more on the legal stuff for work. Citizens Advise usually have a solicitor that is there for legal stuff. Or they always used to.

  • RLS is not classed as a disability, they only take it a bit into account if you have other health problems with it

  • in the UK, yes. But, in the US they take into account the effects that RLS has on your life, you quality of life and ability to hold down a 40 hr a week job.

  • as RLS is not a recognised disability here, they wouldnt take it into consideration how it affects you would they, so there you are a bit better of than us

  • Vince look at your other posts you have on here....Sounds like some advise from someone who has gone through similar to what you are experiencing right now. It could be helpful for you. :)

  • Please dont anyone take this post the wrong way. its my view, my story and not meant to cause any distress. I am a fully qualified medical lab scientist. I gave up my job when I had my family. I know for sure i could not go back to that job now due to my RLS. I dont sleep..4 hours occasionally is good! I cat nap when I can, but get so seriously tired I`m in tears a lot of the time. last night i spent hours pacing the squares on my carpet and took the dog out at 4am. Ive just had 2 hours sleep on the sofa,thankfully with legs at peace!

    this is my life now. i came on this site in desperation, thinking that my quality of life was so bad that i`d really had enough. antidepressents are keeping me sane and my head and heart are now doing brilliantly. they have tho, made the rls worse. but this balance is working for me at the moment

    there is no way i could go back to my career now, even tho i miss it terribly. I could not be able to get up for 7am and do a days work. I now work in a supermarket stacking sheves mainly in the evenings..not what my mother envisaged for me!!!

    But it fits my pattern. I am moving around all night, its very physical and keeps the rls at bay.its not a bad job, Ive just been promoted to team leader and now there is a lot more to it than just filling shelves. we have a good team .

    what i am trying to say is that Ive had to change my life to fit around my RLS...I know ITS NOT FAIR!!. But should we assume that we should be kept in a job that we can no longer cope with??? If I was now working with someone who had back problems and couldnt lift stuff......no one owes us anything..if we cant do the job then why should we be kept on . I agree employers should try their best to accomodate us but it gets to a point there is nothing more they can do !

  • Dragon, what did your job entail as a medical lab scientist. Not sure it is the same in the UK as it is in the USA.

  • my speciality was haematology and blood tranfusion...so basically crossmatching blood for patients and testing blood/stuff for anything to do with anything..this was when we actually did the tests and not just put them into an analyser like they do now!!!!! but i also loved microbiology and histology and did extra there when i could..miss it sooooo much!!

    what does a us one do..?

  • basically the same, except we do not call them scientists. They are medical lab technicians. MY sister is a nurse at the veteran's clinic ( small clinic, one doctor) and she does all the blood work and stirs it, etc. you know what I mean, since you used you do it. Was just wondering, because you have mentioned it before. I bet you DO miss it! I took psychology and nursing, almost had my degree, but circumstances stopped that when I moved to Alaska, and that kind of went by the wayside. I am thinking of going back to school part time, if I am able to physically to finish up my degree. Going to Alaska was not one my better decisions! ;)

  • ?stirs it!!!!???ha ha ...was a bit more complicated than that!! we used to be technicians then we got promoted to scientists. my degree is in med lab sciences. not med lab technicals ha ha . anyway whats in a name. today anyhow its all done by machine and computers. so if i did go back it probably wouldnt be as rewarding. a computer does what we used to do with microscopes and our eyes!!

  • I said stir blood, ETC. ;) etc means a lot more.

  • yes , it involved a hell of a lot more than stirring blood! a four year degree course and a lot of experience, a bit more than a nurse would do in a clinic!!!

  • Good grief, Dragon, i had a great job, wor

    king for Leeds city council, it was a desk job, so you can imagine, ive had to give it up also, i miss it, and more so the salary, but i couldnt cope with it any longer, and for my sanity i retired, hard to fill the days now, but at least im not so depressed or stressed now, oh well, at least my family are good

  • like i said its so not fair!!!!but we have to do what we can to ease our hearts!! and do the best for us!!!

  • damn.. Sorry, I are just sent ages replying only for technology to wipe it before I could post!

    I essence, thank you..

    I will respond more fully later, sorry for now.

  • If the next thing you do after loosing all your text like that is Ctrl z then your post should be recovered.

  • Thanks for this Pete-1 :)

  • Thanks Pete ....good to know!

  • I live in the USA.

    My RLS caused me to quit my job. I have that luxury because

    my husband has a good job. I have 3 kids, one is in high school.

    I found side work as a freelancer since.

    Two times, I applied for disability having multiple qualifications

    and have been turned down.

    My job prior to the last "let me go" "forced me to resign* due

    to not being able to perform required tasks safely"

    In America, they do not have to have a reason to fire anyone.

    Lack of sleep caused a chain of medical events in my life.

    I will be watching this post for the responses. It is nice to meet

    you Sir Vincent. =)

    Glorified Chat Room? Saved my life at least once just from talking

    it out with someone who really understands. My family thinks that

    RLS is a made up disease....so did many that I worked with.

  • Talking it out is the BEST therapy. The 2nd best therapy is making doctors aware of RLS who do not know how to treat it. ;) Lots of us have lost our jobs due to the "snowball effect" of RLS.

  • See, anyone who think RLS is made up disease needs awareness put upon them. I know your family is a tough sell and that sucks for you. ;( mY whole family has RLS, so that is not a problem for me.

  • Hi, im another one who is now out of work due mostly to rls, i do have osteo- arthritis very bad, my spines shot, disc's collapsing into one another, at the top and bottom of my spine, my left hip is worse than useless, but the thing that bothered me most was the RLS, i also had to stop work with what's going on with my body, my lifstyle has totally changed, my marraige broke down because i was "" a lazy git "" huh, some day's i can barely stand, but was still expected to do everything and more, it all came to a head one night, when my husband decided i needed a good kicking, because i needed to learn whos boss, and i was to do as im told, luckily a managed to get my cousin to come get me, i was locked in the garage, they broke it open to get me out, police everywhere huh, i live with my cousin now, and glad of it, so to me, losing my job is not as bad is all that, im here, im alive, not kicking so much, but lifes good now, bless you cuz x

  • Oh Tallula, thats terrible. Im so glad you are ok now x x x

  • I had that same problem, cops all over, etc when my husband decided several times I needed a good beating. So, I sympathize with you there! For SURE.

  • wow...there are some serious stories here..I guess that is the reassurance I was seeking..there is life after RLS.. And there is so much ignorance and prejudice.

    I particularly sympathise with Tallula and Yikes. I am lucky,may wife sees the effects and physically can see that it not just me being Lazy.

    Unfortunately she is in a minority of one! I think everyone else sees it as trivial, even my kids think thier dad is just Lazy.

    Dragon is right of course in today's society.. We are responsible for ourselves..but in that premise, those that can't fend for themselves should be left to rot in the gutter!

    Personally I have not problem with using the system to buy me some time. My work as treated me appallingly. From a wider perspective, business men, lawyers etc get paid on their contribution to their business. If thier business grows by 20% then they get a nice wage rise and bonus related to this contribution.

    Your average working man, including shelf stackers, gets paid hourly, and it. Is diminishing. how much is it worth your supermarket for you to stack shelves, or to another point ho much business would the supermarket lose if you didn't stack the shelves? that is your value to your employer, not the pittance they probably pay.

    In the company i work, people who started after me are paid 15% for doing the same role.. So yes we are all being abused, all in the name of competition. Sorry I didn't, intend getting political, but Dragon did raise the issue. I have seen first hand the decision making process in business, and it is getting worse, the weak have no value.

    In the words of the entrance to Auchwitz ."Arbeit Macht Frei" Enough said!

    As an aside, should we not fight for equality for RLS, it is a disability..if an employer can deem it sufficient grounds for dismissal then surely this in my mind makes it no less a disability than ME or Depression. similarly if DVLA consider it serious enough to stop someone driving then it must be recognised as having a severely adverse effect which precludes them from driving.

    Ok sorry that was so lengthy, but I felt Dragon need a reply, it is only polite.

    As far as my circumstances, and this is a tactic well worth considering if you are threatened with loosing your job. An organisation have to go through various processes, 1: Make reasonable adjustments to accommodate the individual, 2: Explore relocation opportunities, 3: serve notice of termination of contract.. In this case due to capability.. Something this government introduced to make it easier for employers to loose employees.

    Employers are unscrupulous .. Smiling assassins..they talk as if hey have your best interest at heart, but I know from my managerial days and time as a shop steward that they are devious, manipulative and only have one thing on their mind .. Creating an impression.

    Ok so if coincidentally you find depression reoccurring you could ask your doctor for time off work to help with depression. if this is the case, as is mine, then the employer cannot contact you while you are off sick unless you agree. in my case I did at first. until I realised the only reason why they would want to do this is to continue the process and still keep their schedule. So now my depression controls the timescale. According to my company handbook, I am entitled to 32 weeks sick pay.

    So effectively I am delaying the inevitable. but it buys me time. 1: to get a new future planned, 2: perhaps Papworth can find a treatment that controls my RLS. then the reason for dismissal is invalid!

    So at the moment I have been on 4mg Neupro and 40mg Codiene Phosphate. This combination has really knocked me out.. I sleep from 11 to 6 then need a nap at 8 one at 11 one at 3 each lasting one hour or more! I could easily sleep more. I am also forcing myself to excercise regularly .. 45 mins on a rowing machine and 15 miles plus every day on my cycle.

    I feel so angry about Tullulas case, it is not just unfair, but from someone who professes to have loved her once! I guess a symptom of "being responsible for our own life" even in a relationship his Lazy git comments imply that the only reason for being in the relationship is for what he could get out of it!

    Ok I think I have covered everything.. I am exhausted now.

    I do find it interesting that there has been such a great response to this thread.

    thank you all for letting me rant, and I hope that sharing my experience helps somebody.

    A final thought.." tea and sympathy" plays a valuable part, sorry if my comments seem to belittle its worth. Having suffered from depression fo many years I do understand its value.

    I had hoped that on a practical level, there may be proffessionals who need this support and suffer RLS. but then I am being naive .. Why should they give support for free ? after all we should all pay our way, shouldn't we?

  • Brilliant response Vince. I really hope you understand that i am not saying life is cheap and we are not valued. i know i am valued at work as i work bloody hard, and i am good at what i do ( there is lots more to the job now than shelf stacking!!! have to big myself up here!!) but its not rocket science and anyone with a bit of common sense could do it. so if i came up against a reason to be not able to do it i can easily be replaced. a lady i worked with went sick with post natal depression..after a year off they followed guidelines and she was let go.

    and no..we shouldnt be in the gutter..we are allowed sick pay up to a point and help from our employers but after a certain length of time we need to be let go . why should an employer be responsible for us.

    as you say it should be a recognisable illness for which disability help could be paid.

    but its a minority of people who are so disabled with RLS that they are not capable of doing anything at all. its finding that lifestyle and employment that maybe needs some support.

    anyway , your original post really gave me a kick up the wotsit that i had not replied to you before and i am sorry for that, even tho all i can provide is tea and sympathy!! ha ha . Ive just been so wrapped up in my problems and thats not good for me.

    good luck with your plan..I hope you find some answers..one never knows..maybe there is a totally different exciting future waiting for you!!!

    what i really want is a field so i can run a very special campsite!!!! Anyone ???

    oh yeah...and the supermarket pay is rubbish!!!

  • "My employer is taking the line that it has tried to make suitable adjustments but not been able to.. they are now putting me on a one month period to find redeployment ( offering me interviews in Ireland, London places that cost me a fortune to get public transport to), they have advised after this one month period they will then terminate my contract under the capability policy. .......... " I don't think under UK Law that one can be 'sacked' due to chronic illness. You need to contact your Union or CAB; or go to a Solicitor who deals with UK Employment Law. Also speak with your GP and ask advice there.

    RLS can cause intense tiredness. It now disturbs my sleep occasionally but in 1991 after my appendix was removed, I had a WHOLE Summer of discomfort. I tried laying with my legs on 2 double blankets, folded under my side of the mattress; which did help. Until I rolled over onto DH as I drifted off to sleep.

    Nurofen helps. As does eating bananas on a regular basis, apparently I lack potassium which causes RLS for me. If I eat 2/5 bananas daily I have NO symptoms.

  • I am afraid you can lose your job from chronic illness insect.

    Ive been googling..this might explain things a bit

    actionforme.org.uk/get-info...

    I know its mentions ME but its the same across the board!

  • Lots of us have had problems with this site since the web site owners had to implement new changes. But, it does appear to be getting better, thank goodness. not the RLS-UK's fault. I am in the US, and on disability for RLS and other things. Waiting for my back surgery in October. I had a job for 17 yrs and all I got was a hard time after being there all that time and saying I could not work 70 hrs a wk any more or any shift they felt like putting me on. I also have a college degree, but disability was the only way for me to survive. 2 neck surgeries and 3 back surgeries later, we are waiting for the next one. So sorry to hear about your issues, and it should get better on here as we figure out the new layout. This has been VERY recent, and the last week it has kind of straightened out the bugs in the system. so, don't give up. I have not looked at your original questions yet. I have had RLS since I was 14 and broke my back, so have had it for 43 yrs, and it gets worse as we get older. Ask away. I was without internet for 3 days, so I am back now. ;)

  • Nightdancer (I love your posts)

    Do you have support from your family?

    Do you have any close friends that stood by your side?

    I mean this in the most respectful way. Please don't

    take it wrong. I am comparing my life to others on here.

    I am seeking help from you, others.

    Has anyone ever said to you to stop running these groups

    and you should be putting your efforts into working from home

    or you should go out and get a paid job??

    I belong to this group, a group that discusses RA and

    pain management without the use of narcotics.

    My entire family, extended family has told me that if

    I spent as much time contributing to the family income

    as I do "Chatting it up" with people on this site, I would

    make things a lot easier on this family. (ouch, ouch)

    I hide in my shell when they confront me with this.

    What do you tell others if they see you online, but not

    working for money?

    One friend stands by me but she is losing patience with

    me for not ever having extra money to get out and do

    things that cost money. I won't leach off of her for money.

    I freelance to buy any extra things needed outside of

    our family budget. That doesn't include entertainment

    money. Somehow I lost my self value as a person in

    this family.

    I love love love the time that you devote to keeping this

    group going along with the rest of the unpaid staff who

    I consider my only supporters. Thank you everyone.

  • HI! I do not have the family problems that you have, as in no support. My friends are and were USELESS. I have been told it is all in my head, etc, etc. I am on permanent disability, so these groups that I run on yahoo and Facebook are what keeps me sane. As sane as we can be! ;) Both my sisters, nieces, and nieces kids have RLS. So family is no issue. As far as friends, my very best friend really hurt me last year (friend of almost 40 yrs) by saying ALL the wrong things about RLS, and I got very angry with him. I get more support from my RLS friends than anyone else. If I had not found that yahoo group in 1997 and since taken over moderation and ownership, I can guarantee I would not "be" here now. So consider yourself supported! ;) <3

  • Today was the first notification I have received from this site in a long time. I wondered what was happening. RLS is a major disability and it is certainly not considered one in Canada but being it has been mentioned on here i believe that is a cause worth fighting for!

  • I am still not getting notifications, i have to pop over here on the off chance to see if there is anything new....grrrr.

  • This support group is a great start. But for RLS sufferers but I do think we need a facility which goes beyond offering a place to exchange views.. I the main RLS is a lonely business.. It's effects seem to have far reaching consequences in people's lives and there is no real practical help with this..

    Perhaps it is time to look at this.. To me for the support group to be fully effective it needs the following attributes:

    1: a reference section for sufferers to look up anything to do with this condition and its effects and find good quality information and links to resources

    2: A place for the "tea and sympathy"

    3: A part to inform the outside world.. With links from other related websites.

    4: A politically active section.. Working towards getting a better deal for RLS sufferers, lobbying mp's collecting factual data etc, lobbying the media .. Whatever it takes.

    This is just my opinion.. Am I barking up the wrong tree or what does everyone else think?

  • if only Vince, if only :(

  • bbc.co.uk/news/business-234... more bad news if your fighting to keep your job !!!

  • I think for Vince if he has his union on side, he will get help for the fees, if it came to him making a claim... Not good for anyone else who isnt in that union. Its a disgrace...!! :(

  • Links to resources is a really tough find. Some people

    live in the USA and others in the UK... maybe some

    other countries? The RLS foundation is what I used to

    find those links. Most everything on there is very reliable.

    "Other related websites" is off limits to my RA groups.

    We started getting a bunch of sales pitches, unreliable

    information and unsafe advice." I love the idea Vince..

    it just didn't work as well as we thought it would in

    the last 2 yrs.

    The political active section takes lots and lots of money,

    or am I wrong about this? It takes more time than I can

    give but I would be willing to contribute to a group if it

    costs just my time. *RLS has led to financial hardship*

    I could realistically give 5 hours of time per week now that

    I am only freelancing. I need a lot of direction. What does

    it take?

    Loving the energy that you are bringing to this group. We

    are blessed to know you Vince.

  • There are lots of resources for RLS and they are international. ;)

  • We have the RLS-UK Foundation, the RLS Foundation in the US, and other avenues. Most of the people in my groups are from the US, but have a lot from the UK,. and we email our heads off. We have made progress, but have been doing it since 1997. I am in the process of again writing to every talk show in the US, plus other avenues. When there is a bad web site or a bad article, we get them taken down. The ones that are the hardest to get to are the fraudulent cure sites. The Federal Trade (US) is working on that. There are many avenues on the internet. The chair of this charity wrote over 400 letters, so we are not juts sitting back. This is only one group. There are many, many groups on yahoo, facebook, etc. This is great for people in the UK, but also know there are way more places that are international on the internet. So, I do some awareness work with some of my US friends and some of my UK friends. Things do not happen fast after 15 yrs of doing this.

  • Some of what you are suggesting has been tried. Getting the media to take notice is hard to do. The Chair of RLS-UK has contacted most of the National morning tv programmes in the past asking them to do a piece on RLS, as far as i know he never got a reply back from any of them...Those would have been a good place to raise awareness to the outside world. The newspapers are a mine field to deal with, we have been down that avenue.

    The RLS-UK is linked to other world organizations, they have meetings which are shown on the RLS-UK facebook page. A reference section for info would be a good idea, that is something that is down to the RLS-UK.

    Lobbying MP's, someone MIGHT take up our plight, need someone who knows how to write a good letter.

  • I am sure I can have a go at writing a good letter.. the part that is lacking is cold facts.

    Have you seen the film The Shawshank redemption..where the main character is trying to build a Library for the prison? He wrote a letter every day for about 3 years ( i think) until he got results.

    If we had a determined set of individuals working at this I am sure we could get some action.. perhaps the Chair on their own is not enough.

    It strikes me that we have some very empowered and passionate people here.. if we want to we can achieve more for ourselves and fellow sufferers..

  • I send emails and write to people in authority ( in the USA) every day. I am a health activist, on disability, and even bringing awareness to ONE person is a help! There are many determined individuals on my side of the pond and endless emails to send, etc,. That is how the RLS section came to be in health.com. That was a big victory. Sept 23rd is RLS Awareness Day round the world, but we need to do more than that day only, obviously. WE work on RLS awareness in the US every day. Vince, you are talking to people who have done email campaigns, letter writing campaigns, interviews for newspapers and web sites, etc. Sometimes we get a little tired, but we keep on keepin' on. ;)

  • I am sure there would be a few on here who would help with the cold facts. People's stories on how this affects them would help, also how employment can be an almost impossible task to maintain. I think i said in a comment previously to you, it is down to us to get anything done.

    I am lucky enough to be retired, so employment isnt something i have to worry about, but i know a few have posted before on here on their struggle to keep in work.

  • Elsie, I was once drug tested (passed) to see if I was

    on something to be so lethargic. It was a large employer,

    the one that I spoke about above. I wanted to work, I had

    to work at that time... but I was fired, forced to resign to

    get my bonus. (25% of my income)

  • ok Ive got loads of thoughts on this. as elisse said the chair contacted newspapers as well and one of our friens did an interview. she was ridiculed by the reporter and it caused her lots of upset. even though the interview was brilliant and she got the pain and distress of this condition across to everyone. it backfired for her so badly I dont think i would want to do it!

    I have spent a lot of time in the early hours contacting my local mp about all sorts of stuff...from the high speed train link waste of money to the equally bad food waste in supermarkets. plus a ton more. my letters get forwarded onto the appropriate departments but all i get back are letters saying...here is our policy!!!

    I hate the way the world works now but has it really ever been any different. boys were sent down the mines and up chimneys not so long ago! our governments are looking for ways to save money everywhere. I cant see they would be interested in adding RLS to a list of disabilities when they want folk who are dying of cancer to do some work...just see the press every day!

    As for all this about paying for tribunals now..well its just one of a long list to reduce the benefits for people who really need it. i believe it is the fault of so many folk claiming when they didnt need to, so everyone has to suffer. the benefit system has backfired in this way. and the country is falling apart anyway!

    as for raising awareness of RLS..do you think anybody really cares? there are awareness days for tons of things now, but it doesnt have any impact. if you dont have or know someone with that particular disease, i dont think it even registers. i feel if you have an understanding employer, thats brilliant, but if your employer is not aware I dont think they will be persuaded to be any different.

    I believe things are going to get a lot worse unless the is a complete collapse and goverments are run in a completely different way. I am not political neither right/left or any other direction. its just base on what I see happening.

    well , after all that negativity....I feel a way forward could be to lobby pharmacutical companies, to do more reasearch and find an answer. the nhs doesnt have the money but they are loaded! I would be more than willing to do trials or anything else they wanted! I know some reasearch happens abroad but not much in the UK....and if possible to get someone "famous" involved too!

    Now I need Tea!!!!

  • I agree with some of what you are saying...But to sit back and do nothing is too negative, it should be, you never know til you try. From what i have read, things have come to a stand still regarding research which is mostly done in the USA. The drug companies will only go ahead on new treatments etc, if they can see $ signs in it for them, unfortunate that, that is...another way the world is going. :(

    Raising awareness for RLS, is the way forward, after all if organizations hadnt been doing that for years, then we wouldnt have the meds for RLS we have now. No one would have done the research that has been done to find out what has been found out up til now. The drug companies jumped on the band wagon for making the meds, after the awareness for RLS was brought to their attention. Just my thoughts on this...

  • I didnt actually say sit back and do nothing! we have to pick our direction. i tried to explain why some routes in my opinion are pointless. just out of interest...who do you think we should raise awareness with?

  • Anyone who will listen and more succinctly anyone who has the authority to influence. But we will also need the support of experts too..

  • i cant see that you siad sit back and do nothing either, and if anyone is commenting and putting out pro's and con, that thats all good, but as with the rest of you, i doubt the newspaper's will do any good, all the want is to sell there paper's and heaven help anyone they get to use for this purpose

  • i cant see that she said that either ? and its no good putting each other down, if you really mean to do something, then we need to do it together,and put past difference's AND ego's aside and back one another up, otherwise it will fail again, like the horrid newspaper fiasco not to long ago, maybe if one of us, starts a new post, im not good at writting that sort of thing, but a post to ask all member's how they feel, what they are prepared to do to support a campaign, time money or just the effort of arranging something, get people to come up with idea's, then when we have a few ideas, let the members vote, and say what idea they want to run with, how they can help, and if they can donate, that would be a good start i think, what about anyone else here ?? what do you think ??

  • As Moa Tse Tungs said or was Loa Tzu? anyway the march of a thousand miles starts with a single step.

    I agree there is a much wider malaise hitting the world.. the credit crunch is the product of corporate and aspirational greed. In the eighties to quash communities and divide people we were told to believe there is no such thing a society only the individual. We were told greed was good, that we should all aspire to the new god of wealth. As symbols of this we should all wear designed brands, drive the latest swanky cars and live in chelsea... sorry if you live in Chelsea or Beveley Hills! We all of course can't reach those dizzy heights, so when the money ran out, they smothered us with credit.. and now we reap the rewards of a generations lust for status.

    No money, no morality, no compassion, no communities and no time for the underprivileged.

    I totally agree, but if you listen to politics .. even David Cameron has said things like "we are all in this together"..

    there is a wind of change, there is an increasing anger.. there is confusion.. the great American dream has become the worlds nightmare. Corporates round the world can no longer offer solutions, and yet our politicians still revere them as if they are the modern day gods who control our destiny.

    Anyway, this is the fundamental issue.. ideals! As individuals we are a madman ranting .. as a collective we can become a voice that is heard.

    Another quote from the Shawshank redemption.. "we can get busy living or get busy dying"

    We do nothing, then we and other fellow sufferers will have no real support, or we get together and try to do something. All it need sis co-ordination and a strategy..and of course the most important things, support and a will to change from those who suffer.

  • Ok, i didnt need all of you to jump on me.!! It only needed thedragon to make a comment if i had said something she didnt like. !!

  • thats exactly what i meant, nobody is jumping on anyone, so what is the point, this is what it would be like, ego's !!, we put comment's that were meant to try to get each other together, not tear each other apart, it's bad enough fighting RLS,do we really need to fight each other, we should be fighting together !!

  • Do as you say, not as you mean. you did jump on me...there was no need....thedragon gave her comment, so why did anyone else have to say anything. !! Thats why i cant be bothered to come on here...!! Its too much like hard work. :(

  • Elisse, i did not jump on you, i am only responsible for my action's not anyone else's, do not judge me by other's action's.

    I put a comment with good intention's if you cant see that, then what is the point of telling anyone else that they are negative, do you want us to pull together and form so sort of ideas or constantly trying to beat one another down, we are all in the same boat, all i did was make a suggestion, if you dont like the suggestion, or me, fine i give up, i dont need to be your best buddy, i just made a suggestion, it was meant well you chose to turn it on me, how could we possibly get anything done with bitching quarreling.

    I stand by what i said, if we intend to do something we NEED to get together and do it, and im NOT jumping on anyone.

  • I am sorry if there are old wounds and issues that I have opened I really am. But from a positive note, it is great to see that you are passionate about your beliefs.

    If we do embark upon this journey, there will be inevitable differences of opinion and heated debate, that is healthy as long as we remember that we are united in our cause. Debate is good because we challenge our direction and hopefully ensure that we don't follow too many blind alleys.

    The experience of the past is good too, and although we should move forward with clarity and commitment, each time we try there is hopefully one less mine to negotiate and as long as we move further forward each time we will reach our goal. - together and for the benefit of not just ourselves but others too.

  • that's exactly what i was trying to say, and dont apologise to me for anything Vince, i only tried to put forward my thoughts about forgetting the past and think of now, that's all we can do for each other, try to help ourselves, ?!?!

  • Our first aim is to decide what we want want to achieve

    As a suggestion or mission should be "Dignity and understanding for RLS Sufferers"

    .. what our goals should be..

    As a kick off:

    1: Create a place where New RLS Suffers can come for guidance and advice, not just for direct issues but indirect affects too.

    - Possibly ask assistance from sleep clinics and doctors?

    - Possibly get union involved

    - Maybe ask CAB for assistance

    2: Create a knowledge base of RLS information and links

    - Drugs and their side effects

    - Case studies

    - Employment law guideline

    3: Create awareness of the issues of sleep deprivation in our society

    - Lobby as many parties who may be interested - MP's, medical journals, HR journals,

    - If necessary make our own movie and plaster it on You tube!

    These are just a few initial thoughts.. if it requires a new webspace I am capable of pulling something together..

    Your feedback is invited.. and your contributions.. I am sure you can think of plenty of other suggestions.

  • Employment rights wise ( my contact is not a lawyer- purely works for Unite as an Area rep):

    Feedback is

    "Few things to go through, the Company are going through a capability exercise which unfortunately they can do.

    With regards to your potential disability it is my belief that it probably would come under the the old DDA now equality act but your GP should be able to confirm the situation and you should ask him as then it is coming from the medical profession.

    The second suggestion on what represents reasonable adjustment is extremely difficult to quantify but basically is can you fill a role with adjustment that ia acceptable to the Company, please bare in mind they are under no obligation to actually create a role for you. Number three on what should your course of action be quite frankly it is my advice that you do not do anything at present but be positive in looking for opportunities if they are there, certainly at present the Company have made it clear that they are not looking at dismissal, this being when you said about an exit, they were quick to say that they were following a process, which quite frankly is all they have to do. My opinion is that if you were to leave and attempt to claim constructive dismissal their comments would work in their favour, I must again re-iterate that constructive dismissal is extremely difficult to substantiate, please also bare in mind that I am aware that you have not mentioned this but in my opinion I need to clarify just in case it is a thought process. ..... You do really need to voice your concerns to your GP and attempt to get support and suggestions, explain your difficulties, explain that your role is in jeopardy and get him to give an opinion rather than sit on the fence as ultimately what he says will have overriding significance."

    With regards to my being off sick

    "The problem is if you break off all contact they will make a decision eventually on what they know, even if you have a disability although more difficult then will only go so far."

    So beware the goal post have changed.. it seems that we have no employment rights Unless the medical profession confirms RLS is a disability.

  • Hi VinceFW. I'm Rosie (tiredparent) from RLS-UK. Just wanted to address some of your comments.

    - Is this more than a glorified chat room?

    Hmm. I must say that I found that question somewhat critical. We have over 1,000 members around the world, many of whom have found a huge amount of useful information on the site as well as emotional support. It is a discussion forum and does not claim to be anything else. The forum was established and is monitored by

    RLS-UK. We are a charity which aims to spread awareness of RLS amongst the general public and the medical profession. We also provide advice and support for RLS sufferers. Our website is: rls-uk.org

    The charity is run by 6 volunteers (all with RLS) who have families, jobs and other commitments in addition to what they do for the charity. The charity does not have a regular income other than from members subscriptions (£10 a year per member). We keep costs as low as possible and we do not have an office. We meet 4 or 5 times a year (in a location which we use free of charge) and put in a large number of hours in between. So, much that I like the idea of many of the things you have suggested, at present, it just isn't possible for RLS-UK to achieve all of them given our limited manpower and finances. However, we are always very keen to welcome new members and new volunteers! The more people on board, the more we can achieve! If anyone reading this would like to help, please send me a personal message.

    -Is there a dedicated support function for people suffering with Sleep disorders in the UK?

    You commented that you were disappointed to have received so few responses (presumably to this question). I suspect that in addition to the technical problems that people were having in accessing and using the updated site, it may well be that people were unable to help with your question and so didn't reply. Unfortunately, to my knowledge, there doesn't seem to be a reliable, comprehensive, up to date list. There are some lists which are out of date or have been compiled without sufficient checks. This is something RLS-UK is working on.

    Thank you to all of you who have contributed such brutally frank and painful accounts of how RLS has affected your working life and your home life. We suffer far more than the outside world realises. I hope that bit by bit, awareness of the condition and how it is viewed and treated changes. For me, being part of this online community gives me a huge amount of support and I'm very grateful that it exists.

  • Hi Rosie,

    Thanks for taking the time to reply.

    I am beginning to see why it is so difficult to raise awareness of RLS. 1000 members globally is only a small number. I really admire you for having a go.

    If I can help in any way please let me know. After all I would rather work with existing support groups that reinvent the wheel. One strong group is better than hundreds of small groups!

    I am sorry if the implications of this thread are inflammatory, but is has shown the passion and support for the group.

    There are some great people on here, and definitely an enthusiasm to want to help.

    It seems that there is a lot of experience of campaigning as well. if only we can harness it!

    The validity of whether of this sites value is without question. I wanted to raise the question..

    If we suffer from RLS what practical support is available.. With so many ailments you go into the doctors surgery and there are leaflets on "living with PMS/Diabetes/Parkinson's/ depression" etc" and many resources also for those who have spouses or family members with these conditions.

    With RLS this resource is sadly lacking and reliant on good people like you to do what you can with the limited resources available.

    It seems to me that you get diagnosed with this malaise and told to send your driving licence off, but no real help.. Even the treatment is hit and miss.

    Whilst it is great that there is a forum to share experiences, There are many areas it cannot cover.

    I hope now you have raised RLS-UK that those of us on here will support you. You are right that it too big a task for six people, but if there are a thousand members there is a volunteer base which surely must be able to help you?

    Good luck and email me, I for one will do what I can and will be pleased to support you.

  • Where have these 1000 members gone????? There has not been

    any more than about a dozen different people on here the whole time I've been a member. So we can't blame it all on the upgrade..is there anyway the site can get them on here more often. ? Or at least find out why they dont come on anymore.Maybe they have forgotten about us. Or maybe they have found a magic cure and are keeping it secret!!!

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