Running On Empty

Today I am running on empty. If I had any energy, I would be on my way to the gym. I am not moving yet. Well I had some breakfast but am back in bed. I will meet a friend for lunch later today and then possibly drag myself off to the gym after.

I am exhausted.

Maybe I should go to the doctor or something. No wait, I had three appointments on Monday. And I see my rheumatologist next week. I can nap every day between now and then.

These days I am good for about 10 hours a day total. If I lie down each afternoon for a couple of hours, I can then stay up for dinner and go to bed early.

Talk about lack of quality of life.

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Ignore everything I just wrote. I am whining. I am tired. Maybe I need a morning nap after 9.5 hours of sleep. Crap.

All I Wanted Was Some Sleep

Sleep and rest are very important to me. I can't tell you how much. But if I don't get enough my inner pit bull/space alien shows up and makes everyone unhappy.

Yesterday I was very tired by the time I got home. I am still recovering from my travels where I was definitely in the 'weeds' on sleep and rest as well as the stress of late plane flights and time zone differences. I did sleep in a bit and got caught up on stuff at home before going to the gym. By the time I got home at 330 (and reset all the clocks after a (damn) power outage), I took a shower and put on my pajamas. I was going to go to bed early. I ditched cooking dinner and promoted Chinese food delivered as a better option.

I did go to bed early. I read in bed for a bit before turning off the lights. My husband came in a few hours later and several times started muttering in his sleep about 'evacuations'. I kept replying 'there are no evacuations, go back to sleep'.

Then the cats started, actually they started as soon as I got into bed. We have two: Boots, the 'good' kitty; and Evil Kitty, the not so nice one. Boots can be needy especially since we were gone for so long. He comes and meows. He jumps on the bed. He kneads his paws into me. I walks around on me and then settles his big heavy body however he is comfortable and squishes me while he purrs.

Evil Kitty meows just like Boots, but with a slightly different tone. When Boots comes in, Evil Kitty is sure to follow. He wants attention. He had an 'unfortunate incident' before our vacation which included a 4 cm gash down to the muscle and several layers of stitches and the cone of shame for two weeks. This has made him very needy these days (but also delighted to go out and run around the yard at full speed now that he is allowed out again). He comes in and finds me so he can meow when he feels neglected.

Both cats want me to come out and play - or feed them treats or play with the stupid feather on a string or let them out (even though it was raining and dark).

When I went to bed, I thought we would be fine with the windows open and the ceiling fan on as it was supposed to cool off. That was a bad idea so at one point I got up and shut the windows and turned on the AC so I had hopes for sleeping.

Let me just say my sleep was probably interrupted a more than dozen times - once for AC, several for 'evacuations', multiple for Boots' 'Meow', and many for Evil Kitty's 'meow'. I gave up at 630 this morning and let insisted the damn cats go out. I made coffee and started blogging to rid myself of frustrations. My husband woke up and when I asked he said 'he sleep pretty well'.

I am going back to bed and leaving them all to their own devices until I am rested enough. That could be on Tuesday.

The Most Important Part of My Health

Last week my husband has accused me of being cranky several times. My back has been hurting more than it is supposed to (considering all the medications I have to stop that). I have not been in a good mood.

Saturday night I didn't sleep well. I am blaming the (damn) cat for that as he insisted on spending the night out and I got up four times to see if he would come in. My husband tells me that he will be fine when he spends the night out but I know we have coyotes, fisher cats, bobcats, and foxes who would be happy to make a meal of him. And he still doesn't have enough life skills to know about all the potential perils of the great outdoors.

Okay, I got a little side-tracked there.

I hadn't had a lot of sleep last week in general. My body now needs a few nights of at least 10 hours of sleep each day. This doesn't mean lying in bed and taking it easy or napping. It needs 10 straight hours of sleep.

Last night, I went to bed at 9 and fell asleep. Actually I got in bed around 7 because I was tired and read and knitted. My light went out at 9 and I woke up after 7 this morning. I slept through my husband's alarm and morning routine. But I feel great. I really do. I slept well. I feel very rested. I can attempt to be a normal person today (unless I do something stupid like pretend I am a normal person and overdo things).

So the most important part of my health is sleep. Lots of good sleep.

So my non-doctor prescription if you aren't feeling well is to get a good night's sleep.

Houston, We Have A Problem

I stole that line from the episode of Brother Vs. Brother that I am watching as I type. I cannot believe how much I have been sleeping. We had a heat wave here. (In Boston terms, that means 3 days in a row over 90 degrees. The rest of the world may snicker about that but we just don't get that much heat here.) And I am not used to it.

Sunday I wore myself out completely and got overheated and I had to rest with an ice pack on the back of my neck for an hour or so. Monday was another sweltering one. Tuesday was hot as well but I went to the beach for the morning. As I left the beach, I felt the waves of fatigue start. I had lunch and went home.

Yesterday I went to the gym and then met a friend for lunch and a little shopping. I ended up taking a 1.5 hour nap before dinner. My husband made dinner even but I went back to bed at 9 pm. I have been sleeping very well - especially since we put the air conditioner in our bedroom - but I still run out of 'oomph' too early in the day.

So, Houston, we have a problem. I need more 'oomph'. I hate running out of 'oomph' when there is more 'day' left. More 'day' means I have more things I need to do. Napping more is not a cure either....

This is How Tired I Am

This morning I slept through my husband's alarm. I heard him shower and thought he was a taking a late night shower before bed. I did get out of bed for a minute and got a cup of coffee to sip while in bed. I woke up to a cold cup of coffee two hours later. It has taken me another two hours to get out of bed to my computer.

The problem is I need to leave here in another two hours and be alive enough to go to the gym and then a doctor appointment before driving home in a torrential rainstorm. I can't wait.

But I get to sleep late again tomorrow.

This is fatigue for me. I get so tired that I can't function. The reason i got so tired is that i have been running around for the last three days and got up way too early the past two days. Its not that I just need sleep. I need rest as well. Getting up early in the morning is really hard on me.

I can't stay up late so I don't try. But sometimes I just have to get out of bed too early.

My plan for the weekend: bed early, sleep late, repeat.

Sleep Problems, and Solutions

I might have mentioned before that I have problems sleeping. This isn't new. I have had problems sleeping since my 30s. But its only recently that it has gotten much more complicated than just a bit of insomnia. Add in things like:

• Back pain so it can be really hard to get comfortable to sleep at all.
• Fibromyalgia which causes both fatigue and insomnia
• Rheumatoid pain
• Sleep apnea and an evil CPAP machine which keeps me awake
• Should I go on? I can....

In the past, I have been known to get up and wash the dishes and clean the kitchen in the middle of the night because I couldn't sleep. Trust me, I have been all over the house doing things because I was wide awake. 

In recent years, I have been offered medications to help me sleep. When diagnosed with breast cancer, as most other patients, I was given ativan/lorazepam for anxiety which helps sleep as well as anxiety. More recently I was given trazadone which has helped. But not as much. 

My new pain management doctor gave me a new sleep medication which he says promotes more natural sleep. It is tizanidine which is also a muscle relaxant. So far it seems to help with sleep and some other issues. (He felt that too many of my meds were in the SSRI family and when he started changing around my meds, I ended up with too much SSRI going on and my pulse and BP were way too high.)

Anyway, I digress. I have lots of sleep problems. In addition to medications, we have a new bed where we can raise and lower the head and the foot.

So where are we? 

With a new bed and lots of pillows I can get comfortable more easily. Pain management has helped control pain. I have given up on the CPAP machine because I can't sleep with it for more than an hour. (I know this will disappoint my doctors but I am okay with it and understand the ramifications.) My new meds help a lot. 

Currently I wake up once at night between 230-330 am to pee and then go back to sleep pretty quickly. This works for me. I feel rested for the most part. 

My message is if you have problems sleeping, keep trying to figure out why you can't sleep and don't give up. It may take a while but there should be a solution somewhere.

A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

• surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
• dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.

I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

A Conversation

I had a conversation with myself last night, with a few insights from my husband. Let me say I was very tired yesterday. I didn't get through my whole workout and my husband cooked dinner.

After dinner, I made a mistake. I should have gone to bed and not sat down to watch TV by myself. This was the conversation:

Me: I'll just watch a little more TV and then go to bed.
Husband: Don't fall asleep in the living room (or you will be cranky tomorrow because your back will hurt.
Me: Of course not. I'll be there soon.
My inner self: Of course I'll be there in a few minutes but I need to get comfy for a bit.

30 minutes later:
Husband: Don't fall asleep out there. You will be cranky. Come to bed.
Me: I'll be right there. Don't bug me.
My inner self: Just a little more snoozing.
Husband: Are you sleeping? 
Me: No. I'm still watching TV
My inner self: I'm still watching TV through my closed eye lids.

15 more minutes later:
Husband: Wake up and come to bed!
Me: I'm not sleeping. I'll be right there.
My inner self: Its way too comfy here.
Husband: I warned you.

Another hour later:
Me: Damn, I have to go to bed now.

This morning my back might be a bit sore. But the big problem is I ended up going to bed too late to take a sleeping pill and didn't sleep well again last night. Tonight, I will not fall asleep watching TV.

My husband just read this and laughed. I said to him: "you were right". He then gave me a hard time about that too.

That Sleep Crap

So I haven't slept well in years. Back in the 1990s and earlier, I started having sleep problems. I have been known to get up and clean the house in the middle of the night.(Why not. I was awake?) Its not like I wake up dying to pee or need a glass of water. I just wake up and can't sleep.

My husband tells me to relax and feel each body part slowly relaxing and then just close your eyes and fall asleep. I have tried everything you can think of, including and not limited to: exercise, sleeping pills, new bed, etc. I have even counted sheep.

Two years ago my doctor sent me for a sleep study that came back as no apnea or anything. This year she sent me for another one because of my fatigue issues. That one came back with apnea so I was sent for a CPAP study and I just got the results: It was only partially successful. This means I don't necessarily get a CPAP and I get a new doctor. I am being referred to a sleep disorders doctor.

Just what I need, another doctor. I can't wait. But if they can help me get a good night's sleep regularly I'm happy.

Getting Back On Track

This morning I actually feel rested. Actually I felt pretty rested yesterday morning as well. But my day got hijacked and I ended up spending several hours with my father taking him to a doctor appointment (broken second metatarsal in his left foot at age 88) and then x-rays, back to the doctor, and then home. And then home to our house. I was totally exhausted by the time I got home at 430.

But then I slept for close to 9 hours without waking up. So this morning I will go to the gym, then get my hair cut, and go to the library. Then I will stay home and finish what I never got to yesterday. I need to get back on track.

What works best for me is to go out and do things during the first half of the day and then stay home for the afternoon for the most part. I often need to rest in the afternoon so if I am out all afternoon, I lose that key resting time. This will also allow me to eat regularly.

If I skip lunch I have a tendency to eat a lot of crap just before dinner. Yesterday I didn't get lunch. My father and I kept asking each other if we wanted to get something to eat. We both said we weren't hungry so we never got lunch. Eventually, we decided we just wanted to get out of there and never ate lunch.

So when I got home after dropping off my father, it was 430. I first ate a chocolate chip cookie (which also has cinnamon, clove, oatmeal, and pecans - oatmeal is most important) and then I ate some cheese and crackers. Then, 400+ calories later, I decided I needed to wait until dinner. I should have had an apple or an orange and a big glass of water - you wonder why I struggle with losing weight.

I should be home by noon and can then do what I need to do. I need to be back on my schedule. Rest and food are very important and I need to schedule them in to my life regularly.

That Was a BAD Dream

Last night I had a weird dream. I woke up around 3 AM after dreaming that I had a rock hard lymph node on the top of my chest, near the base of my neck. In my dream, I could slide it around and feel it. A bunch of doctors were there trying to explain to me that it wasn't a big deal and chemo would solve everything. Thank god I woke up!

But of course, then I had to see if I could feel a rock hard lymph node on my chest near my neck. Of course I couldn't.

Nothing like a dream to show your worst fears in 'living color'.

And did I ever get back to sleep? No. I am sure I will feel very 'energetic' this afternoon....

I Survived the Week.

I blogged that this was going to be an awful week. It was. My biggest problem is that I was tired all week. I didn't get enough rest and felt exhausted all week. Every time I wanted to take a nap, I couldn't because I had to go somewhere or someone was going to be here.

Finally last night I got into bed around 8 or so to read. I didn't read very long before I fell asleep. I woke up in the middle of the night and fell back to sleep pretty quick. I woke up at 830. That means close to 12 hours of sleep. I needed that sleep.

I feel much better today.

Its amazing how important sleep can be. If you do not get enough rest your body is running on its last legs. Its can be as important as getting food and water. Most people can get by on a few hours of sleep for a few nights. But me, I need my eight hours or more of sleep. Now ten hours is better for me. And I need to be able to spend some time during the day taking it easy.

But now we are on to another week where I do not have anywhere as crazy a schedule as last week. Sleep and rest will be high on the agenda. I will pencil in some naps as well.

I wish I could go back to the days where I could go from one activity to another. Those days are long gone. I just have to get used to that part.

The Snoring Controversy

Do you snore? No of course not. You have never heard yourself snore. So of course you don't. Sometimes its possible your spouse/partner/significant other will infer that you might snore a tiny bit. But that doesn't mean its really true. Does it?

Last night I had the oh-so enjoyable sleep lab test. I had a sleep test about two years ago so it wasn't all that unfamiliar but I don't remember squat these days.... But because of my blood oxygen levels and my feelings of fatigue it was time for another one.

I got there at 830 last night and was escorted to my 'comfy', 'little' (hospital) bed. They gave me time to change into my PJs and hit the bathroom before they put about 800 leads on my head and face. No not 800, maybe 22 or something. But it took about 40 minutes to get me all connected and then of course I had to pee again so I took the whole concoction with me to the bathroom and then got back in bed.

Then I took my sleeping pill so I could pretend I would actually get some sleep. Then she said 'don't stay up late on your phone and she closed the door and shut off the light. Like I was 8 years old. I should have brought a flashlight so I could read under the blankets in bed.

I finally fell asleep and I must have slept for five hours or so. When I woke up I lay there sort of awake but not really for a couple of hours. Half in and half out of it.

At 530 in the morning, the technician was all perky and said it was time to wake up. That was way too early to be perky. I asked her if I snored. She said she COULDN'T TELL ME! What? She said I could ask my doctor after the report was ready. Which is in two or three weeks. She said the sleep lab generates about 900 pages of crap to be read and then it was summarized in a report for my doctor.

After another 20 minutes of her taking off my million little cables, I was allowed to get out of bed finally and got changed back into my clothes. Unfortunately the cafeteria wasn't open yet so I struggled to the gym without coffee.

And I still don't know if I snore or not. I will definitely need a nap later today.

Why Can't I Sleep?

So I am always in pursuit of the land of nod. The only way I seem to be able to sleep is to take a sleeping pill but that doesn't guarantee a full night's sleep. If I get so exhausted I can't watch tv I usually get a couple of hours of sleep. Sometimes I can even sleep all night. But I'll tell you my secret for sanity in the middle of the night. I pull out my tablet and play computer games until I can fall back to sleep.

I am always looking for help with sleep. WebMD can always provide assistance with all things medical. They sent me an email the other day on the Causes of Fatigue and Seepiness and How to Fight Them. It wasn't that helpful. It included things like hidden UTIs, dehydration, heart disease and apnea. None of those are me. And the one that is me didnt help.

"Fatigue Cause No. 14: CFS and Fibromyalgia
If your fatigue lasts more than six months and is so severe that you can't manage your daily activities, chronic fatigue syndrome or fibromyalgia are a possibility. Both can have various symptoms, but persistent, unexplained exhaustion is a main one.
Fix: While there's no quick fix for CFS or fibromyalgia, patients often benefit from changing their daily schedule, learning better sleep habits, and starting a gentle exercise program."

I have done all that. We even got a new power bed with a good mattress where I can raise and lower the head and the feet. I do exercise. I do everything else. I am just very complicated.

I might need to start counting sheep or something.

This Isn't Working

I haven't gotten enough sleep for the past several nights. Why? Because I wake up uncomfortable and can't sleep. Maybe its because we slept in a different bed for two weeks at the rental. Or because I haven't been to the gym for two weeks because we were away. Or because I floated around in the ocean most days. All I know is everything hurts. And it sucks.

However, I have a plan:

• Take a sleeping pill
• Take a pain pill
• Find a really boring book to put me to sleep

So now I will take my great strategic plan and implement it and catch up on some Zzzzssss. I hope

There's Napping, and Then There's Napping

The best semester that I had in college was one when I managed to nap every afternoon. That way I could get up and go to class in the morning, come home and nap, and then study before going out again at 10 pm. I was young but I did get good grades and had a great social life. That is the most napping I have done in my life, until now.

As a rule, these days I try not to nap too much because if I nap, I probably will not sleep as well that night. I prefer just to get my 10 hours of sleep together. However, sometimes when I can't keep my eyes open, I am forced to nap. Or I just nap where I am because I am so tired, I can't move.

There is a difference between fatigue from my ailments and unbending urge to lie down and shut my eyes for a bit. With fatigue, I usually can function enough to lie in bed and read a book.

Yesterday I was fine until about 5 pm when I got too tired to knit and watch TV. That means I was really tired. I got in bed and fell asleep for a solid 1 hour 45 minutes. But then I was up until after 11 because of that nap. I didn't think I got too little sleep the night before but maybe I didn't get enough sleep.

When is napping too much? In the past ten days, I probably have gotten in four 2 hour naps. Is that too much sleep? I don't know. I do feel rested when I get enough sleep. 

I was too tired to blog

I was too tired to blog or do a lot of other things today. I took another 2 hour nap. I also took one on Saturday afternoon.

Last night again I didn't sleep well. I did get up in the morning but felt tired but good enough that I went to the gym. I came home, did some laundry, took a shower. I was trying to be normal.

Then I was trying to watch tv but was too tired. I fell asleep. I did mean to blog but couldn't stay awake. I think I needed that nap. I just hope I can sleep tonight. The downside to napping.

How Do You Sleep?

I went to my meds therapist on Monday - she is the one who prescribes me a sleep aid, among other things. My reply to her question on how I sleep was that I don't. If I take half a sleeping pill, I might sleep most of the night but if I wake up, I'll be up for hours. If I take a whole sleeping pill, I usually sleep all night but might run into a sleeping pill 'hangover' the next day.

Last night I took a whole sleeping pill. I woke up at 230 am and let the cat in. I never got back to sleep. My husband's alarm went off around 5. I got up with him, drank a cup of coffee, attempted to read email, and fell back to sleep (after that cup of coffee).

I then woke up again around 9. I only woke up at 9 because the cat (the little evil one) was walking around meowing because he wanted to go outside. But I do I feel now? Much better.

Unfortunately this is not an unusual occurrence. This is my life. Its a vicious circle:
Going to bed early because I am really tired - take a sleeping pill - wake up in the middle of the night - be really tired - and needing to go to bed early.

I need a nap today.

Finding more rest

Yesterday I did not over do things at all. I did not go help a friend as planned (she didn't need me), I ran a few errands and mostly stayed home. I took a nap. I snoozed, not completely asleep, nor really awake, for an hour and a half. Then I finally felt better and we went out to dinner. After we came home, I went to bed. I woke up when Evil Kitty bit my toes.

However, I am not out of the woods yet. I need to keep up on my rest level up.

Getting behind on rest is like getting behind on pain for me. I know you can't really catch upon sleep but I can get catch up on rest, sort of. If I stretch myself too thin, I can compensate by resting more to feel better. This is my goal for the day. Its not medical science or anything but it does make me feel better.

After all these years I know my body, better and better. Its just when a medical hiccough kicks in and messes me up that I have issues. I have learned the value of a good night's sleep and resting as needed to get me through my days. Do you remember having to take naps as a child? And hating them??? I now appreciate them! And just lying down for most of the day.

But in some ways I am a little old lady...  Who is 37.... Still.

Fatigue sucks. Did anyone find a cure for it yet?

New bed

I consider a power bed to be something of a medical requirement, and not some extra expense at this point in my life. My husband thought it was an expensive luxury and wasn't too happy I insisted on getting one. We can just say we have a difference of opinion on the subject but as I said it was the one thing I wanted with a new house, we got one. I need to do everything I can to make sure I can sleep.

The new bed finally arrived yesterday, in the middle of a snow storm (expected accumulation of 4-8" which turned into 10+" and a six hour power outage). It was snowing enough that we were concerned it would still be delivered as scheduled. I called to confirm around 11 am and they were out on the road. So I called the plow company and he said he would be here in an hour or so. I crossed my fingers that the plow would get here before the delivery truck. Of course not.

Our new house has a fairly long driveway with a hill sloping down from the road to the house. The delivery guys showed up and parked on the street as I doubt they could have gotten the truck back out of the driveway.  They slide the base of the power bed, which is fairly heavy, down the driveway in its box. It was a big sled essentially. They unwrapped it outside and set it up in the bedroom. Then they dragged the old mattress and box spring up the hill and slide the new mattress down the hill (definitely got a workout).

My husband got out of work early because of the storm. When he arrived he had to leave to go run some errands because the driveway still wasn't plowed. I called the plow company again.... An hour later the driveway was plowed and my husband could actually get in the house.

Due to the lack of power, I couldn't show him how the bed goes up and down and you can adjust it and get really comfy. He did lie down on it to read and I could hear the snoring from the living room. He also admitted that it was comfortable. As soon as the power came on, I readjusted it so we were really comfy.

Then when we went to bed last night, I raised the head of the bed a tiny bit (because one of the real points of this bed is that the head of the bed could be raised to reduce snoring). This morning, my husband slept in a bit. He admitted to sleeping well. Me? I was very comfortable. It was every penny. A new power bed is clearly better than a 15 year old mattress with a memory foam topper.