Riding the Big One (RLS 24/7, Hanging Ten)

[EeFall]

Things have been going pretty good, I have been sleeping just about as well as I can, taking my Suboxone everyday around noon. Sleep from around 9 pm until 5 am. 7 or 8 hours of sleep a night. Don't know why it is working so well but I just hope it continues. It isn't like having corrective lenses for eye glasses and getting to 20/20 vision though, if you know what I mean, my 8 hours sleep is not like someone without RLS, that is for sure. Also the meds make me groggy and dizzy. At least I can continue to work. I avoid being around people, I just don't feel comfortable around anyone unless they have known me for a long time. I wish I could be a happier sort of person but it just isn't possible taking Suboxone and the quality of my sleep just isn't what it should be.

It is a mystery as to why things are working well now, for about a month now, I haven't done anything different, but that is RLS. I am at the point now that I am just trying to do everything like I have been doing thinking maybe it will continue.

I wish you all a good nights sleep!

[ViewsAskew]

Great news, Ee!

[Polar Bear]

E - thank you for updating us. I've often wondered how you were getting along.

[debbluebird]

That's the way RLS is, up and down. You just have to get through the bad periods and enjoy the good periods. Glad you checked in.

[EeFall]

Wow, a long time away from here. Unfortunately it has a lot to do with my absence of memory due to Suboxone. I am close to losing my job because of absences. I am trying to get intermittent family leave, did not know it existed until the HR lady told me about it. They could fire me now but if they approve it I can miss a day a week from work and not get in trouble, although I won't get paid for the missed work. I am getting my resume ready this weekend. My luck with getting help from things like family leave (with Restless Leg Syndrome) have hitherto been lame. They just don't understand how serious my condition is.

I have been taking gabapentin, oxycodone, Lyrica, whatever I can to get to sleep at night, on and off for a few weeks now. I have also been sick like flu and stuff which used up all my sick leave and vacation. It is difficult for me to think they will fire me because I am so sick, life is not fair, but of course you all know that by now.

This just stresses me out more and makes it even harder to sleep. Lately I have been getting very hot, especially at night. Even though I keep the bedroom at 60f I get very warm. Also having problem with frequent urination. About once every hour during the day and once every 2 hours at night. Went to a new doctor about it about a week ago, they can't find anything amiss. Figures. He gave me oxy something or other to help so I would not have to get up to go at night. Took it one night only because it made my RLS terrible! LOL, I just can't win it seems.

Really though things are going much better than say a year or two ago so I should be happy. I am reading science fiction stories like crazy. I think because I can escape from this world, I know it is why, it makes me forget all this. I try to avoid everyone but family, Suboxone just makes me weird. It makes me itchy, dizzy, weird, and constipated...but at least I'm not pacing 18 hours a day, and still working, at least for another couple of weeks. If they deny my benefits, I'm sure they will terminate me the next day.

No pressure though (I mean, hell yes there is pressure, in case you thought maybe I was telling the truth). I hope you are all doing well.

[debbluebird]

Glad to hear from you. My stress level went down once I adjusted to loosing my job and we found a new way of life. I think the legs got better. I hope that will be the case for you if it happens. Hope you don't loose your job.

[Polar Bear]

EeFall - it is wonderful to hear from you.
I do hope that your 'intermittent family leave' is granted.
Yes, it is always a continuous struggle to cope with this disease and I do hope that you make it through until you reach a retirement date.

[EeFall]

The problem is I can't get social security for 24 more months and that is the minimum age. I slept terrible last night but I'm sitting here at work on lunch. I can't take something every night or the extra meds stop working.

[Polar Bear]

I never ever had any intention to retire fully and hoped to do perhaps 2 days each week.
At the same time my sleep was getting progressively worse and the scales started to tip, often I was going into work having had no sleep or perhaps 2 or 3 or 4 hours.

Then came the economic crisis and redundancies, I was made redundant 2 weeks before my government retirement date.
That was 6 years ago. It was a blessing. Much less cash flow but more peace of mind.

Eefall, it seems you will be ticking each month x 24. One month, one step....

[ViewsAskew]

EeFall - sorry it's come to this.

I had to stop consulting last year - and then, out of the blue, I landed a job teaching grad students. I don't make a lot of money, but it includes insurance! And, since my classes are online (and in the evening!), I don't worry about sleeping in. I only have to be on campus 5 hours a week. I never would have thought this an option, but it's been two months and all is going OK so far. Sometimes good things happen out of the crappy things.

[debbluebird]

I got my social security disability at age 60 for RLS and memory loss. I don't think i would have gotten much more two years later. I got medicare two years after that. Hope you can wait it out.

[EeFall]

I checked out my claim today and the doc faxed the info to them on last Friday. All I can do now is wait for answer. I may be able to get another job around here but the problem will be keeping it. My memory is obviously not great either, mostly due to the Suboxone I think. I don't feel like doing much of anything anymore except read and watch TV. I still do a good job at work, but then they need someone who isn't always calling in sick. Leave without pay is a good way for them to solve that problem, they will just terminate me. I am glad that they at least seem to be trying to help me. I had never heard of intermittent Family Leave, my company HR told me this, they could have just fired me for lost time.

[Polar Bear]

I really hope this works out for you.

[debbluebird]

I should have added. They found that the memory loss is from sleep deprivation.
I do hope you get the leave.

[EeFall]

Alas, I am home today. Fortunately I do have a sick leave day. Stomach cramps from midnight on, probably something I ate. I can't believe that many people I work with have hundreds of hours of sick leave saved up and all kinds of vacation. It must be nice, I can't hardly remember when I had loads of either.