"You just need a SCHEDULE"
mimosette - Aug 11th, 2009 3:24 PM
[ Original Post ]

....said my husband. Today.

Let me say he has been supportive up until now. Lately I have started taking Cymbalta and every day am feeling a little bit better. Doing a little more. I am a self employed artist and I homeschool our daughter.
But I don't sleep. Ambien , that I took since it came out years ago, stopped working,and Lunesta does nothing for me. My dr won't write a script for another sleep med w/out me doing a sleep study, which is ok with me, but that has to be scheduled .
He called to see what time I went to sleep because I was still awake when he left for work at 7:30. Then he said "You need a schedule. That's all that's wrong with you. Everyone in the world lives their life by a schedule except you. YOu need to sit down, write out a list each week of the time you are gonna get up, go to bed, and what you are gonna do in between".

Excuse me? We have been married 17 years. I DO NOT DO Schedules. When the muse hits me, I might create for 24 hours straight til I am finished. (that is rare, but an example)When I hurt badly, I might not be ABLE to get out of the bed to meet my SCHEDULE for that day. Or I might be able to do 2 loads of laundry and that's it for that day.
or I might have a good day and be able to do a lot.
How can I go to bed and get up at the same time every day when I have had no sleep for 36 hours? If I finally fall asleep, you can BET I'm gonna take advantage of it.Whether it's penciled in my schedule or not.

After telling him just what part of my anatomy he could kiss, I hung up. To make his SCHEDULE for this coming weekend....there are a lot of repairs around the house he's been putting off.

Comment


 

Fantod - Aug 11th, 2009 9:45 PM

Hi mimosette - You and I have a lot in common. I have a creative background and I am also a rabid genealogist. When I get going on something, it would take a pack of wild dogs to pry me off of my current project.

That being said, there is a grain of truth to what your husband is telling you. I live alone now and I often get wrapped up (consumed would be a better word) in various interests. Especially when my pain level is bad. My night time routine with regards to sleep gets totally off track and eventually it all comes crashing down. And, I might add, not in a good way. It takes me days or weeks to get straightened out.

Certainly a schedule is not going to fix everything. It also doesn't have to be confining. I find that if I set general guidelines for myself, I don't feel like I am being dictated to by FMS or the clock. I give myself some leeway about bedtime by an hour or so. Right now, I'm saying 11:00 is bedtime and I usually get there by 12. I feel a lot better just by making that simple change. I never set an alarm unless I have an appointment. My appointments are purposely scheduled for the crack of Noon or later... I get up when I feel up to it. Remember that a lack of sleep causes higher levels of pain. Thats a fact that no one with FMS can or should ignore.

There are always going to be bad days with FMS no matter what you do. I know that you are experiencing a revival now that the Cymbalta has started to work. And, I'm so glad for you. Maybe your husband is scared that you are overdoing it and this is his way of expressing his concern. I think that doing a sleep study is an excellent idea to get to the root of the problem. Get it scheduled and make that a priority.

FMS is so variable and makes it difficult to plan anything. Some days simple tasks just seem impossible. I don't think any of us are long on patience either. A schedule is not an absolute fix but it may, over the long run, make a tiny bit of difference in how well you feel.

Here endeth the lecture and I hope you will take my comments in the spirit in which they were intended. Afterall, we are all in this together. Take care.


mimosette - Aug 12th, 2009 2:25 AM

Well, the cat peed on his side of the bed right before he went to bed, so I feel vindicated.

Fantod,
I know he meant just what you are saying, but he really said it all wrong.

Do you think a sleep study will do any good when I don't sleep ? I may surprise myself and sleep like a baby, but just the thought of sleeping away from home is guaranteed to keep me awake. When I take trips, it takes me 3 or 4 nights to get used to a new bed.

I have actually felt young again today, but have paced myself, ,making myself sit down between choirs & do Facebook, check email,grade daughter's work ,etc. And the weird thing is it was pouring rain and thundering all day, which usually means aches and pains.

I'm being optimistic that this is really the result of the Cymbalta, and not just a "good spell."




Fantod - Aug 12th, 2009 10:18 AM

The cat is obviously your advocate - LOL. And yes, I really do think a sleep study would help. Electrodes will be attached to your noggin so they can map your brain activity. That will tell them where things are going wrong. Its a painless process so why not get it over with and find the fix?

I'm also glad to hear that you are pacing yourself. It is so easy to carried away when the planets line up and you feel good.

Men generally suck when it comes to expressing themselves in a caring way. I'd give your hubby points for trying. At least he's worried about you which is more than I can say about mine. Take care.


JOEGIRL - Aug 12th, 2009 11:01 AM

mimosette, Schedule, Whats that? I have never been a person to keep one even before this fibro hit me and now I am worse. I just go day by day and make no plans for the next day til I know how I feel the next day when I wake up. I am like you when I can sleep I lay down and snooze. I have nights I am uo nearly all night long to.I do know I feel better if I do sleep all night and late into the morning. I have never been a morning person anyway.Night owl from way back.I work parttime 3 night a week. I couldn't hold a job working early mornings. No way so there goes MY schedule.


kctogetherforever - Aug 13th, 2009 1:31 AM

I so totally understand why you are pissed. I hate it when anyone tries to fix it!!! Only can I tolerate people who know what it's like to make suggestions of any kind. Does anyone think we don't want to sleep or not get out of bed.

Now here is where it gets weird. I live on a strict schedule, and I force myself to get up and do what I need to do at that time. If I can do my walk on the treadmill at 3:00, I actually have a better chance of sleeping. And of course, some days, none of this works at all, so I just start again the next day. It has taken a long time to find out that this works for me. I also do the 15 on and 15 off. Work 15mins. and rest 15 mins.

I am not a morning person either and I too am a night owl. So I am on a 2:00 am. to 10 am schedule. If I can't go to sleep, when hubby gets up to go to work, we go to McDonalds and get a biscuit, and then I come back and go to sleep. But I make myself get up at 10 no matter if I have only gotten 3 hrs. of sleep. That way I might be able to get back on schedule that night.
I am 63 and it has taken me 20 yrs. to figure all of this out. I also found that I worried so about not being able to sleep that that didn't help either. I have tried to relax, not nap a lot and if I sleep i sleep. If not I look forward to McDonalds. Hope this helps. Soft huggs Kathy


mimosette - Aug 13th, 2009 9:35 PM

oh, Kathy, I can so relate to the worry about not being able to sleep making it even worse.

I think I have built up a whole sleep phobia. Or a phobia of not getting to sleep.

Last night I took a Xanax to get some sleep, I was starting to ache badly, and I know it was from sheer exhaustion. SO, I slept. Quiet well. Then, got up to have a meal, get daughter started on her schoolwork, and make that call to scedule the sleep study.Then my motherinlaw called, and I had to leave immediately to help her with something, and stayed gone most of the day.
So, it's on my list of things to do first thing tomorrow.

What if I don't sleep? Will they make me lie there all night long, bored out of my gourd? Can I at least take a sketch pad ?a book ? a cat to play with ? I don't think I can stomach lying in a strange bed, twiddling my thumbs all night long.


FibroGal - Aug 16th, 2009 12:47 AM

What a hot topic! I can't do a schedule, either. Fantod, I can so relate to you when you say, "I never set an alarm unless I have an appointment. My appointments are purposely scheduled for the crack of Noon or later... I get up when I feel up to it." That's exactly how I am! I don't do mornings unless I have to get my son up and ready for school and I attend the 11 o'clock service at church. My family knows that, in general, their on their own meal-wise until early afternoon.

Mimosette, it doesn't really matter when I go to bed. I can't get to sleep until like 1, 2 sometimes 3 a.m. And I need at least 9 hours sleep. If the day has been especially busy, I may need 10 or 12. It depends. If I *need* more than 9 and I didn't get it straight through, I end up having to take a nap in the afternoon.

I can relate to both you guys! I'm a creative-type, too. I used to write poetry. I'm also a "rabid genealogist." And, trust me, it's the perfect hobby for a person with OCD.

BTW, mimo, you said in another thread that you take meclizine. I took some of that for a bout of vertigo a couple weeks ago. How long have you been on it? Do you take it regularly or as needed? Just wondering. And kudos to you for homeschooling! I wish more parents would, I wish I could, and I just think that is too cool for words!


mimosette - Aug 21st, 2009 2:41 AM

fibrogal,
I only take the meclazine when I am dizzy. I have to take a laxative if I take it for too long.


fibrosurvivor - Aug 21st, 2009 3:17 PM

Wow what a topic. Well, my husband informed me that we need a schedule and a plan. Yet he doesn't know what that is yet.? He thinks having this will help him deal with my fibromyalgia. I will try what he suggests to the best of my ability because I understand me having this condition is hard on him, but he has no idead what I go through and how hard it is for me.


Sonja44 - Aug 28th, 2009 4:18 PM

A good response to folks giving advise on how we can feel better is...

"My disabling chronic illness is more real than your imaginary medical expertise!"