sleep issues

Post by **badnights** » Mon Jun 20, 2011 5:08 am

Every time I think I've accepted it, something comes along and I realize I haven't accepted it...

ditto!

But I must say I have matured a lot.
Much much more than I ever wanted to....

Post by **Polar Bear** » Tue Jun 21, 2011 3:46 pm

I know you have all been here:::::
Got about 4 hours fragmented sleep last night. Spent the full morning doing housework and early afternoon doing ironing.
Then it was time to go for groceries.
BUT..... my hips and feet were sore (arthritis) and I knew if I had a wee sit down for about 20 minutes I'd be rarin' to go.
HOWEVER I'd only been sitting for about 10 minutes when my legs started to twitch and I could sit no longer. Because I'd been so busy I had been a bit late taking my midday medication.
So I had to get up and walk about, but my hips and feet weren't just quite rested enough. Then while walking around the house I realised just how tired I was..... Weary... but couldn't sit down 'cos legs wouldn't let me.

And still grocery shopping to do.

Happy to say that I'm now back home, with groceries, meds kicked in, in the meantime.

Looking forward to a sit-down after dinner and a bit of drama on tv...... hmmmm..... it never works out that way...

I really do believe there is something in the suggestion of some minor ADHD being a bit of a factor. Even watching tv I'm doing something be it sewing or sudoko.

Post by **badnights** » Thu Jun 23, 2011 4:57 am

Your description made me cringe. to be exhausted and in pain and forced to move.

ADHD is another one of those disorders so commonly associated with WED. or - what was it - mothers of ADHD abd Tourette's kids are way more likley to have WED.

Post by **Polar Bear** » Sun Jun 26, 2011 4:12 pm

At present I am doing what my doc wished with regard to sleeping medication.
I was on zopiclone 7.5 mg and this is now reduced to 1.8mg - a quarter of a tablet, together with Circadin 2mg.

At 4am I was still awake and phoned my son in NW USA which is 8 hours behind the UK. Spoke with him for an hour then back to bed and read for a little while, fell asleep/awoke/tried again..... Eventually I got up at 8am and hung out the washing whilst practically bouncing off the walls. The most I have been getting this last week has been about 3 and a half hours fragmented sleep.

By the time my husband got up up I had wept myself into a bit of a state for a short time.

This afternoon there is golf on tv. Hubby briefly closed his eyes..... and I could feel my anger rising... How dare he doze!! I felt so angry thinking that he was showing no sensitivity for my situation. I bit my tongue and said nothing. Its not hubby's fault and at the moment I think he doesn't know quite what to say to help.

I am following doc's plan to change over to the Circadin on its own, but it is really difficult. And Dr B doesn't reckon it is a strong enough medication anyway.

But I think I shall have to do it this way and try this, before going back to doc with a record of sleep pattern.

And........... I have family for roast dinner in an hour's time.. Aaaggghhhh

Post by **ViewsAskew** » Sun Jun 26, 2011 6:26 pm

I feel for you, PB. It's so hard to "prove" our cases sometimes. And, I might add, silly. I loved working with Dr B - if we tried something I only had to email him within a couple days and tell him the results and he'd be so quick to change it. I've not ever found another doctor so trusting of his/her patients' experience.

Post by **Polar Bear** » Sun Jun 26, 2011 7:59 pm

Thanks Ann, I know I can come onto this board and be understood.

I have been keeping a sleep diary of meds taken and the exact sleep I get and how fragmented it might be. After a couple of weeks I shall go back to doc with the diary. He would like me off the Z drugs as he puts it but I shall be saying something on the lines of....- '''''What do you expect me to do ??? You have the wherewithall to help me. I have tried it your way. This has been going on for several years but has developed into a crisis situation and if you don't help me get some sleep then you are likely to be treating me for a serious depression '''' -

Rubyslipper · Post by **Rubyslipper** » Sun Jun 26, 2011 11:09 pm

Jumping in here late but just had to comment on one thing--we might be boring when it comes to WED and how it affects our lives, we might be boring because we don't feel like doing anything and we might be boring because we are just too flippin tired to do anything. BUT, it is other boring people along with us that are making our voices known and educating people about what we have. Yes, it has been a long and boring road but we have made strides. Out of 100 people that might think you are boring there just might be 1-2 that will come out of a conversation with you thinking "I'm not alone, I have others who understand what I am going through".

Boring? No. I prefer to think of us as riveting illuminators and educators on the subject of WED/RLS. We just are undercover so as not to overwhelm others with our intelligence and insight. The world is not ready to handle the likes of us, yet. Boring?? Never, for we are the Super Heros of WED! Mild mannered most of the time but show us an injustice to our WED family and BAM!! WE turn into WED Person (Willing to Educate Dummies)!

Sorry if I offend anyone with my silliness for it isn't a silly subject. But that's the way I am sometimes! I can't wait to get a new t-shirt with WED on it and be asked what it stands for!!!

Post by **Polar Bear** » Mon Jun 27, 2011 12:58 am

Well put Ruby.

Betty/WV · Post by **Betty/WV** » Mon Jun 27, 2011 7:05 am

I didn't think your post was silly. It was so true. I have talked to people about having RLS/WED but they don't get it. They don't see me sleeping 2 hours up for 3, back to sleep, up again in an hour or two. Being so tired all day that I could easily stay in bed all day and sometimes I do. I take Mirapex and it relieves the WED but a side effect is insomnia. Heeellllpppp. And I have lived most of my life this way. My whole life has been affected. Normal life, what is that.? As I sit here now at 3 am typing. At least I can sit. I used to type standing, venting, crying my eyes out because I am so tired and can't rest. And morning will come and I have to try to function. I am so sick of this, I'm 75 and how much longer do I have and then I realize how much I have suffered for 40 or so years, trying to act like I'm a normal person. And none of my family or friends really understand what I deal with.

Sorry, I'm ranting again. Sometimes it seems its the only thing that helps. I don't even know if I make sense.

BETTY/WV

Post by **Polar Bear** » Mon Jun 27, 2011 8:12 am

Betty/WV, I empathise with every word of your post, its like a mirror reflection of myself. :roll:

Post by **badnights** » Tue Jun 28, 2011 3:30 am

rubyslipper, I laughed out loud, literally. Thank you. I want WED gear too!

And Betty, God yes, you make sense. Most people - including your doctor, PB! - can't understand what it's like, because nothing in their life is an adequate analogy for what we're going through. How can you imagine the devastating effects of not sleeping? Well, I wouldn't think it was that hard. But I speak from the wrong side of the experience, perhaps. I wonder how Dr B came to understand, and to retain that understanding.

Post by **ViewsAskew** » Tue Jun 28, 2011 4:48 am

badnights wrote: Most people - including your doctor, PB! - can't understand what it's like, because nothing in their life is an adequate analogy for what we're going through. How can you imagine the devastating effects of not sleeping? Well, I wouldn't think it was that hard. But I speak from the wrong side of the experience, perhaps. I wonder how Dr B came to understand, and to retain that understanding.

It really seems that some people just are missing the ability to empathize with it. Many of my family/friends have a chronic disorder of some kind - they immediately get it. I think you have to understand what it's like to have something never go away and to always be there, waiting, lurking, wreaking havoc.

Post by **Polar Bear** » Tue Jun 28, 2011 10:11 am

waiting, lurking, wreaking havoc'
class description - quite poetic. I think I'll note that for use with doc.

Last night I was determined to have some sleep no matter how drugged it was. So I took a 7.5 mg Zopiclone plus the Circadin 2mg. Slept one hour, woke up, and then slept for 6 hours !!! wonderful.
My sleep diary is showing a true record and this 'unauthorised' dose of med will be included.

As I live quite a way from my GP surgery I rang this morning to confirm my prescription was ready for collection and that everything requested was on the prescription (which of course it wasn't).
BUT..... on my last visit my doc stopped the Zopiclone 7.5, but must not have cancelled it from the 'repeats' and my prescription today has Zop on it. No way am I going to question this. Am I very bad

I think of it as my safety survival kit for emergencies.

Post by **ViewsAskew** » Tue Jun 28, 2011 6:35 pm

I certainly wouldn't question it.

Post by **badnights** » Wed Jun 29, 2011 6:03 am

Take whatever you can get.

It's so sticky here now, I can only get 15 pills every 15 days, and they won't even take the order a day early - I have to call on the day and pick it up late that day, which freaks me out because if I forget I'm hooped and I'm not the sort of person who remembers to do something regularly every 15 days for the rest of my life, I'm bound to forget at some point!

I have extras from when they weren't so sticky and I could pick up a day or two early, and I also have extras from a time when they gave me 60 pills instead of 30 once. I was still overly honest in those days, but beginning to learn. I didn't open the bag and see their mistake til I got home, and I went through agonies, but finally decided NO, the system is not looking out for me so I had better take advantage while I could. If I had opened the bag in the store, they would have been returned. But now I have them, to ease the 15-day panic.

I think you can clearly tell the difference between taking care of yourself and indulging in something unnecessary. Never feel guilty for taking care of yourself when others are failing to do so.