Daytime Sleepiness, Driving and Work.

[VinceFW]

I have posted on here many times and glad to see it is becoming more active.

As an update on the effects of RLS and my life, I am still no longer driving as recommended, correctly by my specialist at Papworth. I wonder how many of you are aware that failure to notify DVLA can carry a fine of £1000. Daytime Sleepiness is listed on their website as a reason not to drive.

It is also not recommended to operate machinery or work shifts.

Well those of you who followed my posts earlier, will know my employer tried to get rid of me as it was impossible to find with for me as an Engineer that would not include either.

After a long struggle and immense stress, I was finally made redundant along with a third of the workforce last December.

I now have a frustrating search for employment.

At 50 years old, and with a career that demands a driving licence, operation of machinery and possibly working shifts, it is time for a change.

Does anyone have any ideas, who would be willing to retrain and employ a 50 year old who is constantly tired, because I am wrecking my brains to find one!

I just wondered what everyone else's experience was! Do you carry on driving?

My wife understandably gets frustrated too, luckily she is in a good career. But I worry, that sooner or later she is going to decide supporting me is not in her best interest and leave.

I hate being parasitic on her.

I guess this is the price of RLS. The specialists have tried me on almost every type of drug without success. I am currently on Clonozepam. It is the paradox that most of the drugs used for RLS have caused me excessive sleepiness. I have spent the last few years, not knowing what planet I'm on some days.

Money is running out and although we are having a holiday in June, who knows whether we can afford to keep the house going.!

[Jaynielynne]

ouch, that hurts Vince. I don't know the answer for that. People have

told me to drink several cups of coffee. I feel like a jittery sleep deprived

person. =/ Right now I am on medical leave to try to feel better. I have a

sleep study that I have to attend tonight. Apnea can bring on that tired

feeling. I realize that the results go on my permanent record, I can't deal

like this even if I am going to lose my job.

[VinceFW in reply to Jaynielynne]

Hi Jaynie. Thanks for replying.

Firstly I would say don't go for the coffee option..it will keep you awake and make the situation worse.

I have not worked for nearly a year now, although the first six months I was on sick leave.

You have some protection while your are in work, under the discrimination legislation. But beware there is a newish policy called a capability policy which employers can use.

In my case they started the process and I went off sick due to stress.

Non of it protects you from redundancy.

I am struggling to find the right future, for the first six months, I worked at my fitness, was motivated but as time has gone by it has become increasingly difficult.

A vicious cycle of lack of motivation making me tired, compounded with the high levels of tiredness due to RLS.

There are days when I feel it best to simply overdose on these highly addictive and powerful drugs they give us. But I know that will be a waste. However life dragging yourself through the day is a waste too!

Other days I accomplish more, but need more breaks to overcome tiredness.

By the way tiredness is the reason why DVLA would revoke the driving licence, not RLS.

Good luck with your job.

Part of me feels I should try for disability allowance, as it is an illness which has taken my career away.

I have a home study this weekend, my wife is optimistic, but for me I think it will be more of the same.

I hope the polysomnography goes well. Is it at Papworth?

[Hidden]

Hi Vince, sorry you got made redundant. The only thing i can think of job wise, is a part time job. Maybe not what you would like to have, but it would bring money in, even if its not the salary you have been used to. Maybe a job that is mornings only. Or can you do any work from home...?? As for the driving thing, i gave up driving about 3 years ago, not because i was advised to, but i knew i didnt feel safe anymore on the road, when either i was sleep deprived or the meds made me drowsy. They still make me drowsy most days whatever i take. But i am retired and so dont need a car really, altho i do miss getting myself around, but i have good friends and family who ferry me to where i need to get.

Talk to your wife, tell her your worries...i am sure she will listen and put your mind at ease, in sickness and in health. Stressing, can make things worse....

[VinceFW in reply to Hidden]

Hi Ellise, I think I agree with you part time work is an option. But living in a village I would need to travel to work. Part time wages are low and it may not be viable, unless I can get something in the village.

I perhaps need to look into what the world of the Internet can bring.

If I am honest, I have gone from a high flier, where I worked hard, studied hard and gained great qualifications and been lucky enough to have some great jobs, to someone who now has run out of energy and is struggling to find the motivation.

All those years, have amounted to nothing! When I think of the hours I put in, it makes me angry. Now, due to RLS resigned to scraping around to make ends meet..

I am lucky to have a wife who supports me. I am sure you have people who judge you the same, they don't see tiredness as a serious problem. It's just an excuse to be lazy!

Time to review life, find new values, re adjust. That's going to be tough. But I guess you've already been there.

Thanks for being here. It is those who have experience that can help others.

[Hidden in reply to VinceFW]

Hi Vince, some good advise from Bob, the internet idea for work sounds like a better option for you. like Bob has said, the world can come to you these days. No need for client visits with Skype. I know you are feeling down and out with all this and motivation can be hard to find. You have a good brain, even tho its a sleepy one lol. I am sure you could set up some sort of business for yourself. Redirect that anger into something positive. I see lots of people on facebook, who have a home business, i admit many are mums who have found a little niche and work from home. I am lucky enough not to have anyone, family or friends who judge me for the days when i cant even move out of the house, either from a bad night or the meds have knocked me for six during the day. Good luck, need you to come back on here with a bounce in your step, telling us things are going well for you now.

[BobM in reply to Hidden]

I agree, I didn't mention that I don't drive if not up to it. Being self employed allows me to adjust my diary to suit such occasions.

[VinceFW]

Hi Kim,

Thanks for the reply. The driving issue, isn't RLS itself but the excessive daytime sleepiness that is the problem. This is why Papworth are advising me not to drive. Indeed if you check DVLA's website it is a notify-able condition.

I rely on my wife most of the time, but it am luck to live 5 mins walk from a train station.

With this retched disease, you either suffer the illness or the drug side effects. In my case I've been like a zombie for the past few years.

Cash is starting to get tight and affecting my wife.

I'm getting the comments like "once you get a job, we will be comfortable, especially if it's a sales managers job like you used to have! " I understand her .. But unless I can drive, there is no chance.

We have to live with it. But I don't understand, others with health issues less debilitating than ours get support..shouldn't we?

[BobM]

Hello again, I wondered what had happened re your work trails and tribulations, sorry to hear the outcome.

My driving licence was suspended for 3 months 3 years ago whilst the DVLA investigated and I was allowed to drive again. My argument being (in the main) who wasn't sleepy at times and who was to judge someone else s level of sleepiness? It is of course a different issue if you are diagnosed with an official sleep disorder and RLS is not a sleep disorder.

So I would suggest fight it and get your Dr on your side as well. I am 55 now and lost my business and became 'unemployable' at 50, so I fully understand your position.

Self employment is the only real choice ahead, its the one I took, the training available was "wish-y wash-y" and in many cases useless to an employer (at our age). I had only been in business for 3 years and so it was very easy for me to recall how I would have viewed folk turning up with these training schemes / courses on their CV's!!!

So my advice, for what its worth, is find some thing you enjoy, get retrained in that and supporting business skills and get out and do it. I have found it fun, met some great folk and once it nearly landed me a real job.

All the best

Bob M

[VinceFW in reply to BobM]

Hi Bob, sound advice. Thanks. In terms of judging tiredness, I am afraid the polysomnography includes tests to determine levels of daytime sleepiness, no matter how much I plead with my consultant it's in black and white!

But even starting your own business is restricted, it's a matter of being able to visit clients!

But I agree, the pundits give you great advice, you are in control of your own destiny or retrain to become a brain surgeon, banker, solicitor whatever..but in all seriousness unless, like you, you have tried, it's easy to make positive noises and regurgitate the rhetoric that the recruitment and life coaches preach!

So I thank you for your candidness. It's going to be tough, but I suspect like most change, once I've found a solution and readjusted I'll be much happier. As long as I don't end up sleeping in the times in a tube station in London!

[BobM]

Wonder if this is Post Code Lottery, as polysomnography was not part of my tests at all!! A sleep clinic etc seemed to be the back bone?!

Well today you don't NEED to travel, utilize the web, SKYPE, Go To Meeting, Webs etc etc. You will be amazed what can be done and if you find a retailing niche you never need go anywhere!!!!

So much FREE software as well, dont be down hearted, a little prising of doors can work wonders , well when we are up to it!!! hehehe

[guineapiglover]

I was told by my doctor to stop driving because I was taking Ropinirole many years ago. I decided that I would rather sleep than drive and so stopped for a year or two until another GP appealed to the DVLA on my behalf. I was given permission to drive which I do happily although I do not drive when I feel too tired to do so. This is usually after 6 in the day - I do little or no night-time driving. I was lucky to get early retirement because of my RLS when I was 54 and have been able to do some temporary, short hour jobs if and when they suit me.

[mitziblue]

Sweetheart, I fought it for years and finally had to go on disability. I don't drive much just to the store and bank. Best of luck!!! XXXX Mitzi

[syncopater]

Sorry to hear about your situation. I empathise. I have had severe PLMD for years and over this time I found that the drugs, of which I tried so many, invariably created even more of a problem with the hangover effect. Not only was I tired in the mornings especially but spaced out, not ideal for a very demanding, stressful job in which I had responsibilities for safeguarding vulnerable people. I did not want my employer to be able to use the capability procedure against me and force me out so I flagged up the disability issue and the employer's need to make reasonable adjustments for me. I was offered another similar post but with more travel, not ideal. I eventually negotiated flexible hours, starting and finishing earlier. Somehow I struggled on to the point when I went off an long term sick leave and my contract was terminated. Fortunately by then I had reached my occupational pension retirement age. For once I was glad to be that age. My experience taught me that it was better to try to limit the use of drugs due to the side effects often being worse than the condition itself. In particular I tried to avoid drugs which altered brain action like Parkinson's drugs. All the sedative drugs lowered my mood and Baclofen made me feel sick on minuscule doses. I now take nothing at all and feel better for it but then I don't have to go out to work anymore. In my case PLMD is what affects me. I have had the related RLS when my iron levels have been low and I have been anaemic. It is to be honest worse than PLMD, very uncomfortable and disruptive to life in general and sleep in particular. I hope that you can find something suitable. Have you considered working nights? Maybe that is a stupid suggestion but if you were in a job where you were active at a time when the RLS was active maybe it would help. I recall that physical activity helped my RLS. Also there might be more job opportunities in night shift work. Just an idea. I wish you well.

[Windwalker]

Most RLS sufferers have lost their youthful vigor and are not profitable for an employer to pay. I started a business when I was 30 and am now 78. It has languished since I have had RLS. I only do the bills and payroll which is slowly going down hill. It is a paradox. Here I am a business man who has stopped doing business.

I have fallen asleep at worst times and there is no way I can help myself. It is an illness screaming for a cure and all the medical profession can offer is narcotics and orphan medicines that were developed for Parkinson's disease. Only a fraction of the number of people who have RLS have parkinson's and billions of research dollars are spent on Parkinson's

The medical reachers and drug companies are ignorant of the market out there. 10% of the worlds population has RLS and it isn't even recognized as a disaease by the medical societies in the USA. SHAME ON YOU IGNORANT PEOPLE.