I Need A Nap - Or Reasons I Don't Blog

I haven't been blogging (as I promised) because I have been too exhausted. I meant to blog today, yesterday, the day before, and probably the day before that. But when I finally have a chance to sit down and gather my thoughts to blog, I am exhausted and just can't formulate words.

I do need to blog as it helps me destress. But I haven't been able. Maybe I just need a tropical vacation....

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.

Until I Drop

Every day that I go out the door (which is not everyday), I go until I drop or that is what it feels like.

Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.

At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.

Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.

I Need A Day In Bed

I am exhausted. I have been too busy. I can't keep up with my last few days.

My husband came home from his business trip on Thursday night late. I stayed up to wait for him so I didn't get enough sleep. Friday he took the day off and we went to the grocery store, the library, PT, and more. Friday night my brother and his girlfriend showed up - after I went to bed so I got up and talked to them for a bit. Saturday I had a craft show and we left the house at 7am. I wasn't home until 530 and then we went to my parents for dinner. Sunday I had a craft show and we left the house at 8am. I got home at 5pm. Then we went out to dinner with my family. This morning my husband went to work and I had breakfast with my brother and his girlfriend before they left around 9am.

Now I have a plan for the day:

• Lie in bed for most of the day
• Do my PT exercises at least twice today so I can tell them truthfully I have been doing the when I go back tomorrow afternoon.
• Keep my feet up for most of the day.
• Catch up on a little bit of paperwork after my craft show
• Talk to my attorney about my upcoming disability hearing.
• Not eat any more cannolis until Walter gets home tonight.

I am physically exhausted from being at the craft shows and on my feet too much.So my feet hurt from my RA. 

The problem is I should be tidying up for the cleaning people who are coming tomorrow. I think that won't happen. I think I will do the basics tomorrow morning and go with that. I just don't have the energy.

And I have to prepare for upcoming house guests. Ether three or four cousins will be visiting between now and Thanksgiving and staying here at different times. Well, two might come together. But that is a lot of house guests. I'll plan on lots of naps.

I Travel In Elite Circles

Well I don't travel actually. But Lady Gaga of all people and I have something in common.We both have fibromyalgia.

Her fibro is bad enough that she has cancelled the European leg of her latest tour. Because of pain and fatigue.Why do those terms sound so familiar to me?

Think of it this way, if a famous personality who makes money by going on tour to sell more albums (or copies of songs downloaded - or however they count that these days) has to cancel, she must be in a lot of pain.

I can relate. (I wish I had a European tour to cancel - as long as I went to a lot of beaches and my husband was there, and someone else carried all the luggage) . I am happy these days with making it through going to the gym and the grocery store before I collapse.

I hope she feels better and gets some good pain management to help.

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....

Managing Fatigue

Do you remember how tired you felt during chemo and at the end of radiation? That's how tired I feel every day. As a result, my new word of the year is 'no'. As in:

• No, I am not going anywhere
• No, I can't go there tomorrow
• No, the only places I am going are the ones I carefully planned.

Nothing else. If you want me to do something with you, we need to plan ahead. (Unless an emergency and then I am happy to help.)

I cannot drop things and go to the movies or visit someone. I plan what I am going to do and then I plan how long I have to rest and recover.

Yesterday I had a fairly normal day and met a friend for lunch (and gave a neighbor a ride in an emergency) but then didn't sleep that well last night so it took me a couple of hours to get my butt out of bed. After I go to the gym and stop by my parent's house, it will be a lazy day for me. Nothing more. If I feel energetic I will set up my loom while sitting in front of the TV watching LMN movies...

And no, I am not up for any more.

Managing fatigue takes a lot of work. It takes planning and thought. I know I have obligations but I work carefully to manage meeting them. Just because I no longer work, it doesn't mean I have spare time for fun stuff. Any spare time goes to doctor appointments.

I think I sound really negative here but I often feel pressured that I am letting people down and can't get together as much as both of us would like. I'll just keep practicing the word 'no' and hope I do not offend.

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.

I Need A Nap

I am so tired these days. I haven't been getting enough sleep. I have been doing too much. Now that is not new but we did go away for the weekend and I have been busy all week with a bunch of things. These have involved getting up early in the morning which I am not good at any more.

This fatigue reminds me why I no longer am working and trying to get SS Disability for the past year. But all I know right now is I need a nap but I need to cook dinner and tomorrow I get to pick up my father at 7 am, meaning I have to leave here at 630 - not my favorite time of the day. I think I will take a nap when I get home.

Grrr....

Once Again I Wasn't The Patient

And it was nice. I went to visit my brother for the weekend. And didn't really see him. He had a kidney stone (and a lot nastier word to describe it) that caused him intense pain.

I did get to go to Lowes with him to get parts of his upstairs sink. I also ran and emptied his dishwasher twice. Drove his children all over the place and visited him in the hospital. I fed his cat several times. I walked his girlfriend's dog a bunch of times - including in a snowstorm. I let the dog hog the bed one night and then I let the cat snuggle the next nights. I had dinner with his ex-wife and two of the children one night. I also drove 7 hours to see him and then 7 hours home.

However it was fun. I am glad I went. But because I didn't see him much, I will go back out and visit him later this spring.

Honestly it was nice that I wasn't the patient for once. I feel like I am always at doctors or hospitals. (Today I have my 15th doctor appointment of 2017.)  But it was a long drive.  I find it very different for me not to be the patient - the one the doctor wants to talk to. They couldn't care less about me and I like that part. There are no questions about my numerable ailments, pain levels, or anything. I can be part of the furniture. I think I need less time with medical people.

Cost of Exertion

I read an article over at Rheumatoid Arthritis.Net on the cost of exertion. What is the cost of exertion you ask? Basically, if you run a marathon, you might be a little tired the next day if you are a normal healthy person. Or, if you are me, you go to the gym and the grocery store in the same day, and you need a nap.

If you have a chronic illness (or ten) you have a greatly limited ability to do much of anything. Learning to accept your limitations is an important part of coping with your ailments.

Yesterday I met a friend for lunch and then we went shopping for just over an hour (because it started snowing like hell and we wanted to get home before the roads got bad). Then I needed a three hour nap. And today I am still exhausted.

But I am happy I am tired because I did a fun thing. As opposed to going to the grocery store and then needing a nap.

My life is a balancing act. I balance the exertion with recovery. I could spend all my time doing nothing, which would not be good mentally or physically. I wouldn't be in any shape to have any strength to take care of what I need to do. And emotionally I would be a wreck. Or I could work as much as I possibly could, and I wouldn't have the energy to take care of myself and would be in worse shape.

Or I could do what I can, laundry, groceries, and the gym three times a week (which is taking care of me) and then resting and recovering as needed. I spread out my exertion. My husband does all the heavy lifting and I do the laundry and groceries - but  he carries them up and down stairs for me.

But sometimes I can't do even the basics because I need the rest. That is what the cost of exertion is to me.

Managing That Sleep Thing

Yesterday I got to my last craft show of the season. I got set up and then sat down in my booth to regroup before the show started. I was nice and warm and I started to fall asleep. At 9 o'clock in the morning. In front of hundreds of people. Several times during the day, I had to get up and walk around (and steal fudge samples from the booth next to me for the caffeine) to stay awake.

Why do I get so tired? One of the many reasons is the fatigue caused by my fibromyalgia (and its insomnia) and rheumatoid, to a lesser degree. It also turns out I have been diagnosed with sleep apnea which causes me not to sleep very well. (What's another ailment along with all the others? I have stopped keeping count.)

Because of my reports to my primary care that I get so tired sometimes I can't stay awake and  need to nap extensively, she sent me for a sleep test back in September. It came back with reports of Apnea. So tonight I am going to another sleep test, to try out a CPAP machine. (I am so excited, I can't wait.)

If I end up with a CPAP that has a giant mask on it, I won't be happy. I think the new ones have something under your nose only. I don't think I can sleep with a big mask on my face.

At this point, I would be happy with a good night's sleep regularly.

Expectations vs. Abilities

Sometimes expectations exceed abilities. But the real problem is when other people's expectations of me exceed my abilities. For example, last week we saw family friends and agreed we need to make it an annual event. It was suggested to me, actually I was told, that we should alternate hosting and my husband and I should host next year.

Um, that doesn't work for me.

I have major limitations on what I can and can't do. I do not go out much at night because I get too tired. We don't entertain much again because I get too tired. Or end up in pain.

No I am not meeting for drinks at 9pm. I am going to be in bed by then. No I am not going for a little walk because you want to. But we could go out and have a cup of coffee or you could come here and we could have tea. Anytime we plan on doing something, there always have to be an out - can I cancel at any time because I need a nap or to lie down.

I am learning to manage my expectations regarding my abilities, but it is clear I need to learn better how to manage other people's expectations.

When I worked, I was a big fan of managing up. This is where you train your manager to understand what you do well and what you are like. It is clear I need to learn to manage my friends and family. No one more trip down or upstairs is not what I am about to do anytime soon. Nor, once I have said I am exhausted, I am not going to stick around for another cup of tea. I am heading home to lie down.

I feel like a recording when I keep saying 'no' but I will have to keep doing so until they get it, which may be never. In the meantime, we will not be hosting an evening get together next year. Maybe during the day, unless I need a nap

I Was Too Busy To Blog

Its the truth. I was too busy to blog. Tomorrow we are hosting Thanksgiving dinner for the first time. My mother, after 45 years of hosting Thanksgiving, has decided that she wants to go to someone else's house for dinner. Now I do admit to doing a fair amount of the cooking for the past 30 years or so, but its the first time at our house. In our new house with its big living room and open to the kitchen dining room which is why we now can host. In our new house with all my health ailments.

That's okay, my husband helped a lot and I can always take a nap if I get tired. Since I have cooked, I do not do dishes.

So anyway, today I have:

• brined the turkey
• chopped celery and onions for two kinds of stuffing
• chopped vegetables for veggies and dip
• made a pecan pie
• chopped the Brussels sprouts
• Set up beds for four guests after finding the sheets, pillows and blankets
• Went to Michaels (for a frame for the picture that should have gone on the wall weeks ago), the grocery store (for butter - you can't make Thanksgiving dinner with two sticks of butter, bagels and cream cheese), and the drugstore for my two prescriptions that I needed. 

I still have to:

• Make the dip for veggies and dip
• Wash and trim the green beans
• Set up our pill boxes for the next week
• Order take out for dinner
• Make a second dinner for our house guests that will show up around 9pm.

So all that being said, I am exhausted (but don't tell my brother or husband or they will start telling me what to do all the time). I need to take care of our pill boxes and go to bed early. And sleep late.

With my health ailments (and even before then), I do not do well with not enough sleep. I need sleep, I need sleep, I need sleep. Last night I was so tired I fell asleep before taking my giant pile of nighttime pills. I did wake up in the middle of the night and took the important ones which won't mess up with my morning pills (some need to be spaced out). 

But I digress. I do not want my health ailments to interfere with my enjoyment of Thanksgiving. I want to be able to enjoy spending time with everyone. After I sleep and take all my pills. And delegate more cooking stuff.

Its A Miracle

I have been running around like a crazy person for the last few days, and will continue to over do things all through the long holiday weekend with three days of four house guests, hosting the big dinner, and then two craft shows over the weekend.

Although I was completely exhausted by yesterday afternoon, I noticed a lack of noticeable amounts of pain. I was so tired I couldn't stay awake after dinner - in bed before 8 (and feeling no shame about it). I went to bed, did wake up for an hour or so, but feel rested this morning. I hope to take a significant nap this afternoon as well.

But pain? I have been doing pretty well. I had a doctor appointment yesterday where they asked me my pain levels and I thought about it and said maybe a 2 or 3. That is not bad for me. What was hurting? Back, right shoulder, left hip, and right elbow. But my back was being okay. I have been doing all the good things, such as taking my pills, not carrying things around, etc. But I have been doing a lot.

This is a miracle. Even though I have been exerting myself and doing what many people will tell me is too much (yesterday was one doctor appointment, one PT appointment, gym, Trader Joe's, Bed Bath & Beyond, and Best Buy), I have not been debilitated by significant pain recently. (Knock wood).

My fatigue continues to dominate my life but its nice to be (sort of) pain free. I'll just schedule a daily nap as needed.

Redundant

Today is a copy of many previous days. I am tired. I am in pain. And, damn it, I have a dentist appointment this morning. I hate the dentist. This is actually the periodontist who is aggravated with me because the insurance company screwed up and they still haven't been paid for my last appointment in January. (Don't blame me, blame the insurance company.)

I should go to the gym. But I don't think it will happen. I could go back to sleep right now... but then I would sleep through the dentist. This is my life.

I didn't even do that much yesterday. I took the cat to the vet, went to my knitting group, and then picked the cat up from the vet.

My life is redundant, either that or I am stuck in a vicious 'Groundhog Day' rerun.

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.

Relearning to Balance

I have had any ups and downs recently. My life has changed significantly in recent months since I stopped working. It has given me much more time to spend on things I enjoy. And time to spend on things around the house that I never used to be able to get to.

On the other hand, as I spend more time on the things that I enjoy I find I lose track of time and end up over doing things. Then it takes me time to recover. And I don't get to the rest of the things I need to do - like cook dinner.

Last weekend we had a party on Saturday afternoon. Sunday morning I didn't feel too bad so I went to an event I really wanted to attend. Then Monday I was too tired for anything. I didn't even go to the gym. I basically stayed home all day recovering (except for a single doctor appointment).

After resting for a day, I felt some what better and attempted to take care of things around the house on Tuesday for a few hours - paint a few walls. Bad idea. I ended up being wiped out again and needed to rest again on Wednesday and Thursday morning. Thursday afternoon I had my knitting group and had to run a few errands. Again Friday I was fairly tired but did make it to the gym and the grocery store. And spent Friday afternoon doing recovering.

This is not balance. This is up and down and up and down and more down and up a little and down, and down and down. Then I spend 12 hours in bed mostly asleep and many hours watching bad tv while knitting and reading.

I need to relearn how to balance my life so I can take care of the things I want and not spend so long recovering. Its a new lifestyle so it needs a new balance.

And there are only so many HGTV shows and Lifetime movies I can watch before my brain starts to rot. And there are only so many books at the library I want to read.

I think I am tired

Its 10:49 AM and I am still in bed. I was going to go to the gym today around 11 but that's not going to happen. I do have a doctor appointment at 215 PM that I will go to. But I am tired.

This is what happens when I make any attempt to be normal. I went to bed at 9:30 PM last night. I admit that is a little late for me. I just over did things a bit this weekend and I didn't sleep well on Friday and Saturday nights.

We had a party Saturday afternoon and everyone was gone by 8:30 PM and I went to bed around 10. I rested for a bit in the morning before the party. Yesterday I did go out for a few hours in the afternoon. But today I am exhausted.

Unfortunately when I do too much (and it doesn't take much to for me to get to 'too much'), it takes a few days for me to get back to normal. Luckily this week I have a few days where I can take it easy in a row.

This is what I hope the Social Security Disability people will some day understand. I can't work or do anything for more than a few hours before I have to rest. If I push myself to do anything that involves more than a few hours, I pay the price. I was trying to work four hours a day, two days a week and it was too much for me.

But I digress. I will spend three days recovering from two days of pushing myself. (Thank you fibromyalgia.) My first goal is to get my butt out of bed and have some breakfast.