want to scream- doctor rant etc

Post by **Polar Bear** » Tue May 10, 2011 8:20 pm

I also 'survive' on poor quality and interrupted sleep getting about 4 - 5 hours in total but in snatches of maybe 1.5 or 2 hours at a time with an hour in between.

I am 62 years and have been retired for 2 years. Before retirement I would often have been at work not having slept for 48 hours. Once I was so exhausted that I took a half day from my leave allowance, went home and took a sleeping pill, because I had an event that evening that I had to attend and hadn't slept for two days.

A couple of years ago I had arranged to visit a friend for the day at her holiday home which is a one hour drive. Without having any sleep I set off at 9 am and drove to meet my friend. it was a nightmare as my eyelids started to drop. I arrived safely and as I parked the car, facing a wall, I took my foot off the pedal with the car still in gear (a manual car with gears, we have very few automatics here in the UK) and the car lurched forward slightly hitting the wall and damaging the car.

We spent the day 'shopping' and I was practically staggering. By mid afternoon I had got through it and was energised again. At 7pm I drove back home the one hour journey.

There is no doubt I was a danger to myself and to others. I can only say that poor sleep and sometimes no sleep is something that has been a part of my life for so long that it is almost considered as normal (for me). But that is no excuse..... I should not have made that journey and reckon that in my physical and mental state through lack of sleep I did not even consider that I was unfit to drive. I did not make a bad decision because I did not make any decision.... it never crossed my mind. It is quite scary that I was so sleep deprived that I did not realise how unfit I was because I was used to being in that state.

And I take Requip which has a side effect of insomnia.

Before retirement, the time had arrived when I felt overwhelmed and was happy to leave work which is something I had never ever dreamed I would feel.

When I recall now of how I went into work full of the joys of Spring, the full make-up and hair done, I have no idea how I coped 'cos it was all a front and inside I was crumbling with exhaustion.

Andrea, how you cope as a triage nurse in ER without good sleep is beyond me. An angel indeed.

Andreadrea · Post by **Andreadrea** » Wed May 11, 2011 3:58 am

I wouldn't say I'm an angel, per se. I was seriously irritable the other day, and I feel like my judgement was impaired, unfortunately. The good news is that I'm doing a bit better, getting 4-6 hours instead of 1-2. It is interrupted sleep, but I'm feeling more functional.

Post by **badnights** » Fri May 13, 2011 1:26 am

Betty, I hope something works for you soon. I had bad nights even after my EKD was dealt with (frequent awakenings, prolonged periods of wakefulness, difficulty falling asleep - sometimes not til it was time to get up). That only stopped when I was told to take zopiclone (sleeping pill) as part of my nightly regime for the forseeable future. Do you take any sleeping aids? It made the difference for me.

Andrea: How clear it becomes just how far we are from being able to treat this disease properly, when someone is so sleep deprived that she's happy to be getting 4-6 hours per night. It's nowhere near enough, but seems so good in comparison. I hope things turn around for you soon.

The fights that we've put up - and still put up- are amazing. Like Polar Bear, we wonder how we survived. I burn to change something, to fix all this; but I entered the wrong field

. And I would be too tired anyway.

Post by **Polar Bear** » Fri May 13, 2011 8:14 am

Betty, yes, what sleep I am getting is with the help of zopiclone and also with the addition of a prescribed antihistiman to boost the effects of the zopiclone. The antihistiman does not appear to have any bad affect on the ekd/rls symptoms.

Post by **badnights** » Sat May 14, 2011 5:36 am

The newer class of ant-histamines is fine for EkD/RLS. I keep forgetting if it's the ones that can or can't cross the blood-brain barrier, but I remember that it's the newer class.

I had no idea an antihistamine would enhance the hypnotic. Does that mean I might be able to take an antihistamine to enable me to cut my dose of zopiclone?

We have a plethora of Beths and Bettys here, don't we. I would have used a descriptive username when I signed up but I didn't realize I was entering the name that everyone would see.

Betty/WV · Post by **Betty/WV** » Sat May 14, 2011 6:19 am

I don't know if I mentioned before, but I haven't been driving for a while now. Because I have been falling asleep driving. Which has scared me to death. I thought maybe it was the Mirapex causing it, but my neuro said no, I was fallling asleep very simply because I was "sleep deprived". Well, I knew that, for years I have been merely existing on 2,3,4, hours a night of sleep. But I guess it has caught up with me. Sometimes I feel like I have missed out on half my life. It hasn't been a life well lived. As I said before just making it from day to day was all I could do. Now I'm 75 and I look back, at all that I missed. Too late now. I couldn't have many more years left. And what is left is full of illness, doctors, meds. etc.

BETTY/WV

Post by **Polar Bear** » Sat May 14, 2011 12:37 pm

Bethf: I am actually a Betty also. Fortunately I didn't use it when I originally registered

The antihistimine I take is Hydroxyzine-Atarax 10mg. Doc said it was very common to use this as a sleep aid.

Post by **Polar Bear** » Sat May 14, 2011 12:51 pm

BettyW/V: Oh Betty, you sound so sad.... I want to send you hugs. I hope you were having just a low moment when you posted, and that you now feel a bit brighter.

Things are tough, they were tough in the past and we have no reason to believe that our symptoms and our sleep will improve, but we must go on....

and I'm sure that you have had a life well lived in ways that you yourself are unaware of.... there will be many people who will recall kindnesses you have done, smiles you have given, perhaps even as you are reading this.

At times I feel like you do (I'm 62), most days I have the tiniest little cloud which does not leave me.... and I am tired of being tired. Tired of being the one that everyone expects to be strong, and afraid of being not strong.... and therefore not being 'needed' to the same extent. I want less responsibility but I don't want to be the one who 'needs'.

This condition gets us down, by its symptoms, by us always having to be aware of what we have planned and taking our meds on time or we will pay for it, it gets us down with our lack of sleep. We don't know what person we might have been if we did not suffer from ekd/rls.

I finished a book yesterday and a line stuck in my head..... 'no matter how great people think I am, I will always have my inner self doubts' ... I can relate to that so well and think that our lack of sleep has caused us untold and unrecognised miseries that we are barely aware of ourselves.

Laurachrissy · Post by **Laurachrissy** » Sun May 15, 2011 4:20 pm

This is very interesting, the ability to function on very little sleep.

Betty/WV · Post by **Betty/WV** » Sun May 15, 2011 4:44 pm

Polar Bear: Thanks for caring. One thing you said that I have often thought----"what kind of person might I have been if I didn't have EKD."....Because EKD has hindered me in so many ways. With a little more sleep I know I could have been so much more. A better mother, wife, could have accomplished more. But every day I was always tired, and going on just determination. Oh, well, it could have always been worse.

Betty/WV

Laurachrissy · Post by **Laurachrissy** » Sun May 15, 2011 4:45 pm

cornelia wrote: Being a nurse makes the 'side effects' of RLS even more difficult to live with I suppose.

Yes it does, my brain was sluggish; not my body.

Rubyslipper · Post by **Rubyslipper** » Tue May 17, 2011 1:57 am

I understand your concern about sick leave. I have worked for a great company for 20 years now that understands about RLS. However, that doesn't help the fact that as of today, I have 6 sick leave days to get me through the year. At this point, I should have many, many days built up. Granted, I have had several surgeries. It's just that I can't catch up, much less get ahead. Many days I do drag myself to work when I really need sleep. But that doesn't always work. When you are so sleep-deprived that you end up making a huge mistake that can cost the company lots of money, then you had better stay home. Right now, it looks like I am headed for another surgery. So instead of getting vacation time to relax and do something with my family, I will use it to recover. Bottom line is...it sucks.

Yes, for the most part we can straighten up and get it all done. But not always.