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

[Polar Bear]

Have a great day

[EeFall]

Have a great day

We got back home today which feels really good to be home. We had a great time away though. We stopped at a restaurant on the way home that had some wonderful food. I ended up having a kobe beef burger with pork belly, homemade bun, and they made their own potato chips. Best hamburger I have ever had. For dessert we shared a Baked Alaska which was crazy good. Nice way to end the vacation. Not really over because I have tomorrow off also but it is really to recover from the vacation. At one point we had about 50 relatives out on the beach at night and around 30 of them must have been kids. I walked out into the waves at 11pm which was an interesting experience.

Gabapentin has been working very well with Suboxone. Usually sleeping in a hotel is pretty difficult for me but it wasn't any problem at all. Last night I even drank some white wine before bed which I should never do if I want to sleep yet it was no problem at all. My arm is getting progressively worse but the vacation has really mellowed me out and I am not worried about the operation anymore. I just wish I didn't have to wait 3 more weeks for it to happen.

[ViewsAskew]

Just reading your post made me a bit wistful - I want to do the same!

[Polar Bear]

[EeFall]

I mowed, weed eated, and blew off the road, patio, and walkways this morning with the leaf blower which took about 2 1/2 hours total, maybe I should have went to work today after all it would have been less physical labor. Woke up exactly at time that alarm would have gone off, only it was off - oh well, got about 7 hours sleep which must be all I needed. I just took a shower and I'm hoping I can sit here doing nothing for the rest of the day lol

[EeFall]

Of all the appointments not to miss my pre-op appointment would be at the top of the list. Last night about 5:15pm I realized I had forgotten my 4pm appointment. I called up but the surgery office will only schedule those appointments so they told me to call this morning at 8:30am. Didn't have too, they called me on my cellphone at 7:30am. Now I have one last chance, next Thursday, if I miss that appointment they will have to reschedule surgery - yikes! I've got to get to that appointment no matter what, I want this done yesterday.

Besides that though my week since I posted last Monday has been very good as far as sleep. Last night I forgot my gabapentin and took it at 10pm. I read in bed for an hour and it conked me out like it should. I am even working this weekend, both days. It will about pay for my week of waiting that the insurance company makes one do for medical leave, so the first week is no pay then the next weeks are 80% pay. Pretty good actually, it will keep us going. One less thing to worry about while I am recovering.

I am extremely tired right now but it is the end of the week. I'm as good as I'm going to get, the sleep is plentiful but the fact is it is not like getting normal sleep. It is enough to live a fairly normal life though and I am very thankful for that. Suboxone is like the energizer bunny, it just keeps going and going. The gabapentin too so far. Doc gave me a prescription for it and I had a stash too. I can take up to 6 a day but usually only take 2 a day, occasionally, like last night, I took 3 (I found that 3 at once will make me sleepy if I forget to take them), or if 2 doesn't work well I will take an extra one.

I'm only taking those 2 meds now for WED. I now have new, very powerful, brownies that my wife made for me which are stored in the freezer. Emergency purposes only, like if the meds after surgery totally don't help (which is likely). I did try them the other night and found out the hard way that the 24 brownies should have been cut up into 48. I tried 1/2 a brownie but nothing happened after an hour so ate the other half. 10 minutes later the first half kicked in, then another hour or so the last half kicked in and I was (medical term) wasted. It is now legal in our state! Not that the legality of it mattered much to me back in 1969 when I first imbibed

Seriously though I hope it becomes legal across the land, if not totally legal as here, at least available on a prescription (which I had last year here) as it does help RLS, especially the depressive state that is caused by lack of sleep. My wife was looking at me like I was mental the other night as I was laughing out loud (loudly) at many things on TV. She has tried it several times over the years but it does not faze her at all, it simply does not work on her. We are truly opposites in so many ways. She does like wine though

[EeFall]

Another evening and I can't sleep. I read in bed until 11:30pm now I'm pacing as I write this on my phone. I knew at about 2pm today while at work, yeah Sunday, that it wasn't going well. I was going to take an early Suboxone but decided against it. Got home at 4pm and quickly stuck my 4mg dose under my tongue. It seemed to work but I decided to take 3 (900mg) gamapentin at about 8pm because I felt hyper (rather than 2). I never got sleepy. When I got up from bed a few minutes ago I took a .25mg pramipexole. Maybe a bad idea but it has been at least a few weeks since I took it and it didn't work. I should know within an hour. I might have to start alternating meds again. I feel like the saying nothing lasts forever for RLS sufferers (at least for me) should be nothing lasts for weeks as far as stability in life, as far as these horrible meds we have to take.

Why am I pretending to be well? I shouldn't be working weekends, not many healthy people do that. It's ludicrous. I'm done venting.

[ViewsAskew]

It's a very interesting topic - why do we keep pretending we're OK? Maybe because there is no other way for us to exist. But, most of us who finally have to admit it find a way. They downsize, move, do something - but they make it work. I keep talking about having accepted it, but it continually rears its head, so I clearly have not. Maybe it's a process and takes time.

No clue.

[EeFall]

It's a very interesting topic - why do we keep pretending we're OK? Maybe because there is no other way for us to exist. But, most of us who finally have to admit it find a way. They downsize, move, do something - but they make it work. I keep talking about having accepted it, but it continually rears its head, so I clearly have not. Maybe it's a process and takes time.

No clue.

I'm clueless also, also I don't feel well, took too much. Gotta get to bed and my VPAP.

[Polar Bear]

Yes, why are we always doing OK...!!! I am not doing ok today.
I've had 4 hours sleep in the last 2 nights.
We had two Grandchildren on sleepover for two days.
Today I had to be at health centre early to do bloodwork. My darned feet are puffy, I never have puffy feet !! kidney function test required.
Then shopping to buy a baby gift.
Then shopping for me.... which had to be done and which is mad when I am wrecked/wiped, fibro must be coming to the party this week.
Head fuzzy.....and I'm late on meds.
I got home and took meds and loads of water, had nothing since a banana 5 hours ago !!
Had to hunt out paper work and now have to go to the bank and sort stuff.
Chicken into the oven before I go.
I'm glad I'm retired !!
Hubby is also retired, he's playing golf today.

That's my rant over.... me and my jumpy legs are off to sort stuff.

[ViewsAskew]

I don't know, PB, but it's definitely maddening.

I supposedly took the year off from work. But, I'm president of a professional association and leading an advisory committee through a change management process as we re-imagine the whole organization. I'm here as a moderator. I am a volunteer mediator and work on two committees at that organization. And, I have taken work twice so far from paying clients.

That's taking the year off????? And I'm mad when I have a flare of symptoms and it screws up my schedule - but I'm not supposed to have to schedule anything - that was the point!

OK, my rant over, too. Hope you ate more than a banana....

[Polar Bear]

You know what..... sometimes we are our own worst enemy.
Just look at the folks on this thread. I bet not many of us are the type that can have a 'sit about' and do nothing for a while.
Especially if WED symptoms are in hover mode and are just waiting for their chance.

And Views, you are on a year off work....... ???
Our work kind of extends beyond working hours ..... does a hobby sometimes count as work, or an interest ?? in that they can 'take over' ...... sometimes our boundaries get blurred.

Yes, I had another banana on wholemeal and a glass of milk to tide me over until dinner..... which was a nice roast chicken that we should have had yesterday.
It got set to the side yesterday when eldest son and family took us out to dinner (because we'd had their kids for 2 days)

Eefall, I really hope you are feeling much better today, we think we have a routine set up and then it changes in a blink of an eye.

[debbluebird]

I think that I'm just ok, most of the time. I've also realized that my WED/PLM isn't as bad as others, at least at the present. But it did cause me to loose my job and a force me into retirement. It's been 3 1/2 years since that happened. I have finally adjusted to all of that. I have learned that between all of the drugs I was taking and lack of sleep they caused my memory loss. I do miss working. I've also noticed lately that the memory is getting worse. I watch more TV than I ever used to do. I watch mostly animal shows and home improvement shows. I have a few that are fiction with TV/movie stars in them. I'm finding that I can't follow the plot. Or I have no clue as to what they are talking about. Also movies fall into that category. It's getting harder and harder to follow directions of any kind. This is very distressing. When I'm sewing, this causes me to make mistakes since I don't know what the directions mean. I've told my current doctor and she just blows it off. I"m thinking of trying to find another doctor. But at least she will write my Methadone scripts. Even though I sleep most of the time, I don't think I'm getting good sleep with my CPAP machine since I can't keep my mouth shut.
So, I'm in the boat with everyone else, I'm ok. I guess it could be worse, and it sometimes gets worse. My stress level is down, I have less inflammation and I'm getting around pretty well.

[EeFall]

I am pretty sure I am lucky to be alive today. I messed with the meds last night and I had trouble breathing. I made it to my VPAP machine but my breathing was so bad the machine was out of sync for hours last night trying to get me going I suppose.

I assume now that 4mg Suboxone (taken as I take it which is more like 6 or 8mg dose) plus 900mg of gabapentin and .25mg of pramipexole is a dangerous combination for me. I would hate to wake up dead!

I forced myself to go to work even though wife asked me not to. Very difficult day.

[Rustsmith]

debbluebird wrote:
Even though I sleep most of the time, I don't think I'm getting good sleep with my CPAP machine since I can't keep my mouth shut.

I assume this means that you have a nasal mask for your CPAP machine. I also have issues with keeping my lips closed with my APAP machine, so I have two different face masks that cover both my nose and mouth. I got the hard plastic mask like the one that the sleep lab used during my second test. However, that was causing me problems so I purchased a soft, cloth mask as well. Both cover my nose and mouth but not my eyes. So now, my lips can leak as much as they want because my mouth sees the same air pressure as my nose.