Up and Down, Again

Everyone has ups and downs in their life, especially with their health. Or maybe I have more ups and downs than the average person.  Okay, maybe my health has been on a downward slide for a while few years now.

However, I realized the other day that I was actually feeling pretty well for the first time in quite a while. I mean my back has been sore but the rest of me has actually been doing okay. Its kind of nice actually. And it makes me think how long its been since I felt that well.

I had been feeling as if I was over-medicated in some ways for the past few years. I changed my pain management doctor and had reduced some medications over the past six months, with the help of my new doctor. I also finally am on a new medication for my rheumatoid. Finally, I think I am finally healed from my knee surgery. I think I also had a case of the flu in mid December (but I had gotten a flu shot so it wasn't that bad.)

All of those combined were apparently wearing on me.  But now I feel pretty good. I was considering talking to my husband about going for a walk with him this weekend. But that didn't last long.

For the past couple of days, I realized I have been feeling pretty well. This morning I had a lot of energy. I even was planning my social life for once. After the gym today, I went to the library. After I left the library, I realized I had to go pick up my prescriptions (again). All of a sudden I was exhausted. I didn't even have the energy to bring in the empty trash barrels. I dragged myself into the house and ate some food which helped. But now I am lying in bed. Probably for the rest of the afternoon.

Tomorrow will probably be similar. Up and down. If I get a fairly good night's sleep, there will be more up than down. But overall I am feeling better mostly.

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'm Tired

I'm watching the new season of Top Chef so I can say I got myself in the weeds for rest this week. I think the term of being in the weeds is a restaurant kitchen term. It started when I had a two day craft show last weekend, followed by houseguests all week. They were my cousins and I was glad to see them. But I didn't get enough rest.

Today I'm staying in bed and resting. For tomorrow's craft show and a friend's party. And making brownies for the party.

But in the meantime, I am lying in bed as long as I can today.

Too Tired

I was going to write I am too tired to blog. But I will squeeze a few words out. But this is my life. I felt okay this morning. Did some weeding in the heat and 100% humidity and then went to the gym in the air conditioning. After I cooled off I took the car for an oil change at the dealer.

I had to wait standing up at the dealer for a good five minutes to get checked in. That makes me tired and cranky. They were very nice about it and even told me about a bakery where I could get a snack while I waited. It was a five minute walk. That was too far for me to walk so I sat at the dealer.

Now that I am home and have had something to eat I am going to continue to sit here for a few hours because I am too tired.

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.

The Best Laid Plans

The best laid plans sometimes never take place. I have had a plan to take the best care of me as possible. This includes regular trips to the beach because that is the best place for any kind of healing. I mean the sun, the sea, the waves, (the hot life guards), and fresh air. What else does one need? I mean besides being able to go to the beach with out the preceding bathing suit shopping? (Bathing suit shopping is the only bad thing about going to the beach.

Back to my plan, I was going to go to the beach today. I even tried to talk a friend into going with me. I have a doctor appointment at 8:15 AM (What was I thinking when I made that appointment?) this morning and then I planned to go to the beach. Today will be a perfect beach day because the humidity is gone and there will be a nice breeze.

The problem is I am exhausted. If I didn't have a doctor appointment this morning I would have stayed in bed. I will have to be happy with a nap later today. Or I could suck it up and paint another wall in the living room (but that's not going to happen).

I didn't think I stayed up that late last night. And while I did wake up this morning at 4 and let one cat out and one cat in (my other job), I did go back to bed. Normally I would deal with my not that great night of sleep and go to the beach and then come home and take a nap. But today I think I'll just take a nap.

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.

Organized Vs. Scatterbrained

I do not consider myself scatterbrained. (My husband would disagree and has several other adjectives to describe my lack of organization at times.) I do blame fibro fog, chemo brain and whatever else I can remember to call it.

I used to be fairly organized... Well sort of organized. Organized but dependent on my lists to keep me organized. Now I cant remember anything long enough to write things down so I can take care of them. I'm retired so who needs lists? Or so I thought.

So I have resorted to lists again. I will go back to my work habits and keep a running list of everything I need to do so things will get done. I have at least ten items on my little list that I already started. Everything from making appointments for the cats at the vet to calling Verizon (I hate dealing with big companies' phone trees so I have been procrastinating on this one).

Our house looks like a tornado went through it as well because my fibro fog/chemo brain allows me to overlook the chaos that surrounds me. I have never been a neat freak but my organization has sometimes been lacking. Or I just got tired and needed to take a nap and slept through my cleaning time.

But now I will get my list going before I need a nap.

I'm Tired

There's a news flash. I'm tired. I have been exhausted most of the week. Sometime earlier this week I managed to get overtired. My husband ended up cooking dinner the other night. My back hurt too much an I was too tired. Then I didn't get a good night's sleep for a couple nights. Last night I didn't sleep well again. I did manage to go back to sleep this morning for a few hours which made me feel better.

But my biggest problem in life (besides getting cancer a couple of times, rheumatoid, and fibromyalgia as well as a bunch of other ailments) is getting enough rest. You can treat everything else. But you cannot treat fatigue. Other than taking lots of naps.

So my goal for the next few weeks is to get plenty of rest... but I'm going to a couple of yard sales, do some gardening, and I'm sure I will find some more things to do. I'll have to plan a nap, or two, or ten!

I Am Too Tired

You know you are tired when people you don't really know tell you that you look tired. At the end of my knitting group yesterday, people told me I looked really tired. I went home and got in bed for a few hours. I did get in bed long enough to cook and eat some dinner before going back to bed.

Yesterday I knew I was going to have a long day. I had a long postponed appointment to return some volunteer materials to an organization for which I am no longer able to volunteer. They were meeting me half way but I still drove over 150 miles round trip. And went to my knitting group. I was gone from 9 am to 430 pm which is a very long day for me now.

Today I am contemplating skipping the gym because I am so damn tired. Yes I am that tired. But I still have other things I need to do today. The most important is getting my nails done - and that doesn't require much effort. Actually more important is I will stop by and see my parents.

I know going to the gym is a good thing but I think it might be better for me to save my energy and continue to rest. If I don't go to the gym, I can stay in bed for most of the morning, which is something I really need.

I have to do something about my life to slow down. In the last few months, we have been busy. Last week we went out to dinner twice. I have taken care of a bunch of loose ends (like driving so far yesterday) and life is calming down. But gardening season is approaching and I still need to finish painting. Maybe its time to hire someone for that.

I want to add I am not a lazy person. I just have a very finite amount of energy each day and I seem to have used up too much energy earlier this week and need to rest to recover. Its sort of like having a really bad cold or flu where you don't have the energy to move from the bed to the couch because its too far and would take too much effort. I wish it would go away but there is not much chance of it.

My Body Isn't Letting Me Do What I Want

I have big aspirations for our new house. And I'm cheap. I hate, hate, hate, hate the paint colors in our new house.

Brown paint in the master bedroom makes a smaller room look tiny. And there are chips in the walls where the previous owners pulled hooks out. I can't stand it. The same purply brown paint was used in the hall bathroom. Making it look like another cave.

The kitchen is this ugly taupe/tan which continues into the dining room and living room and the upstairs hall and the third bedroom. The second bedroom and the master bathroom are pale green - also known as cucumber by Benjamin Moore. Initially I hated it but its growing on me.

Then the downstairs, where do I begin? The majority of the main area is painted a dark, dark, dark blue. If you rub your fingers or anything else on the paint it leaves a mark. Evidently the previous owners wanted a gaming/theater area to be really dark. They even replaced the drop ceiling tiles with black acoustical tile. And they used blue painters tape to hide the white runners between the drop ceiling tiles. The rest of the room is decent a lighter tan which is nice with the white trim.

My aspirations include repainting the entire inside of the house. I have no thoughts that I can do it in a reasonable period of time. I had thought I could paint a room each week. There is no wallpaper here that needs to be removed. The walls are in pretty good shape. I need to spackle, tape, and wash the walls first.

I started by getting a nice pale peach for the hall bathroom that will also be used in the kitchen. That was Monday. I painted Monday. I did more on Tuesday but I was so exhausted from Monday. But I still need to go back in there. First I need to get a better paint brush. and see my therapist and go grocery shopping. I might not be able to paint today. I think I can paint tomorrow.

I mean I will have time to paint tomorrow. But I don't know if I will be up for more painting tomorrow. And I need to clean up the mess I made in the bathroom and put everything back to the way it was. So I should be able to finish this week. I hope.

Then I need to rest up before I try painting the master bedroom next week. I think that will be one wall at a time instead of the whole room. And a lovely pale blue.

Seriously I didn't think I would be this exhausted from painting. I take breaks all day long. I didn't even expect to finish in one day. But damn I'm tired.

I am not working now. I am, by nature, cheap. I really do not want to pay someone to paint the house. I expect I can do that. My husband works full time and I do not expect him to spend all his time fixing up the house. I want to pull my share too. I expect myself to contribute equally to the household. But my body is letting me down here.

I ran out 'rest' before I ran out of 'week'

I had a tough week. I didn't have enough time to rest. It was very difficult. Last night I fell asleep on the couch at 8 pm and then got ten hours of sleep. I may need a nap later. (The cats don't understand that I need to sleep.)

This was my week: Monday was a holiday and we had house guests. Tuesday I didn't go anywhere but I got a lot done at home and got up with my husband and made him lunch before he left for work at 7. Wednesday, Thursday, and Friday the electrician was here. While I greatly appreciate having a house where all the outlets work, having outside outlets and exterior lights, as well as ceiling lights in all the rooms, I had to get up and be dressed long before he got here at 830 am. All three days I went out and ran errands for a few hours when he was here.

You think that sounds like nothing. But it was hard for me. To help you understand, the biggest issue I face on a day to day basis is not pain, it is fatigue. (Except when pain decides its time to rule and I am miserable.) You can treat pain with medications, therapy, and more. You cannot treat fatigue. There is no magic pill for fatigue. You need to lie down to recover from fatigue and wait until you feel better. And that takes time. Lots of time. And I felt weird about taking a nap while the electrician was here.

Today my plans are to give my husband a list of stuff he could take care of and then stay in bed for a few more hours. I have a new stack of books from the library, a DVR full of shows to watch, and cats who like to snuggle. I also want to get to a friend's estate sale to provide moral support but that will have to be a bit later. We will then go out to dinner and I will again go to bed early. And I hope to sleep later again tomorrow. And take another nap.

Why am I so tired?

I am tired. A lot. I need naps. I am sure a doctor will tell me its due to fibromyalgia or rheumatoid arthritis. All I know is I need a nap. I slept almost 12 hours last night and feel that I need a nap later today.

Yes I will talk to my new primary care on Monday but I still will take naps. Its not just that I need naps, I don't have the energy to do a lot of things I want to do, such as see friends.

But I digress. Its been a busy day so far and its not even noon! I'll have to fit in a nap later.

Why do people read my drivel like this? Its awful.

Fighting fatigue

These days I go through life fighting fatigue. I never seem to get caught up on my sleep. I prefer not to nap too often so that I can sleep all night. And I have prescription sleep aids to help me sleep through the night - which makes a huge difference.

Every day it seems I get to a point where my body is saying 'sleep' and my mind is saying "don't, you are driving a car" or "You are at work"... You see the problem.

Last night we went out to dinner and then I needed to sleep. Earlier in the day, I fought off fatigue while driving (and didn't fall asleep). A cup of coffee doesn't always help me with the fatigue and I really do not want to drink coffee all day because then I will never sleep at night. But if I am at work, I have resorted to coffee.

Right now I am doing okay. I got about 11.5 hours of sleep and am drinking coffee. But I may nap later.

My life

Apparently I need more sleep than I thought. This may be why I had a bad week last week.  I was cranky. I was tired. My RA was bothering me. Work was stressful. And made me cranky. I don't think I got through a full work out at the gym all week.

I was very tired by Friday night. Then Saturday I did a lot of nothing (well I went to a few garage sales) and then took a 3.5 hour nap. Then I went to bed at 10 and slept for 8 hours. I could take another nap today. I probably will.

I will work harder at keeping up on sleep this week. I might even fit in taking a few naps.

This is my life. I have to fit in naps. I have to take it easy. Regularly. I have to have naps. I have to sit around with my feet up.

It all caught up to me

Exhaustion that is. I have been riding this wave of feeling okay most of the time. This happens every so often. Wednesday I felt it a bit. I came in the door at 530 after getting my nails done (a post chemo personal preference - after destroying my nails in chemo, I appreciate them much more now) and felt a wave of exhaustion come over me. We did go out to dinner anyway. I figured I would be okay if I just went to bed after that.

Yesterday I was okay in the morning and made it through work, a couple errands and the grocery store. By the time I got home, I was tired and decided I needed to lie down for an hour before making dinner. An hour later I got up and told my husband it was left overs in the microwave for dinner and back to bed for me.

I was exhausted. I was more than exhausted. I slept all night. The alarm went off and I slept for another hour.

I am still tired but I think I can get through today and probably cook dinner.

This is what happens to me. I function normally and do normal non-energetic things. Then all of a sudden I am completely wiped out. Exhausted.

Tomorrow I hope to sleep late. Maybe even get that crucial 12 hours of sleep. Thank you fibromyalgia and rheumatoid arthritis for doing this to me.

Fatigue, needing sleep, being tired

I drag my butt out of bed these days as opposed to jumping out of bed. It is harder and harder to get up in the morning. I have never been a fan of snooze alarms but my husband introduced them into my life when we got married. Apparently now I need a snooze alarm. As I slept through the first four alarms this morning.

There is a difference between fatigue, needing sleep and being tired. To me the differences are:

• Being tired means you need to rest to recover from exertion
• Fatigue means chronically being tired
• Needing sleep means needing sleep

I blame it on fibromyalgia predominantly. It causes fatigue. I get sleep and then I am too fatigued to get out of bed. I get tired also - after going for a walk or to the gym. Sometimes I am too tired to finish my workout. Sometimes I am too fatigued to cook dinner.

I plan my life carefully to avoid being too tired in mid-day and needing a nap.

Hmmm... I think I have another topic of discussion for my upcoming physical.

A day off from blogging

I missed blogging yesterday. I meant to blog but time got away from me. My brother and  his four children (ages 8, 11, 14, and 16) are visiting. This means chaos. The poor cat  had to recover from over affection from children.

They are a lot of fun but some how take a lot of time. Breakfast seemed to last for a few hours as people wandered through and ate and left, came back for seconds, etc. Very different from the quiet mornings with just the two of us.

After my nephew learned how to make lasagna yesterday morning, my sister came over and the volume increased. Then all of us went for a walk in the woods on very icy trails. I thought I would be fine but I was exhausted.

Eventually they all left and went to Boston. I was physically exhausted. My RA feet hurt. My fibromyalgia body hurt. I needed a pain pill and a nap.My husband and I took naps. The cat continued his nap.

Then we went to my parents for a late Christmas dinner. I lasted about another 3 hours before I had to come home and become horizontal and sleep. I lead such an exciting life.

Today, my husband went to work (traitor) and left me home to deal with all the chaos. I have to take the remaining car to the garage for the day so I will be carless. This might even force me to take it easier than yesterday. But I will be at the mercy of family members to retrieve the car at the end of the day.

I can tell you I am physically exhausted still. Crap. This is no fun. But I do get to see everyone.

Day Two of Pajama Girl

More pajamas for me. To continue yesterday's sagas, I finally got out of my pajamas in time to take my younger niece and nephew shopping with my husband. The kids were happy with books, ice cream, and a music store where a weird piccolo was purchased. We came home in time to watch a movie with popcorn. Then we proceeded back to my parents to eat left overs. After which I took my older niece shoe shopping for her birthday.

I was tired by the time we came home so it was pajama time again. Today I am still in my pjs at 11 am and promise to take a shower shortly before going to an early dinner.

The reason for my pajama girl discussions is the contrast in my health from a year ago. Last year I was just diagnosed with RA and fibro and had much more energy and capacity for doing things with others.

What a change a year makes. I need more naps. I need more rest. I have less energy. I just get damn tired too often. Crap.

Today I will go to the early dinner and come home for PJ time again. Tomorrow life might begin to return to normal as I will stay home except for a quick trip to the gym.

Today you can call me 'Pajama Girl'

I have been very busy recently. I worked Monday and Tuesday. I made pies and did all sorts of things Wednesday. My brother arrived Wednesday evening with chaos (four nieces and nephews) and we had spaghetti and meatballs and salad for dinner. Yesterday morning we cooked more - my older nephew helped make a cabbage dish and my younger nephew helped make the scalloped potatoes. We went for a walk. I was exhausted by 2pm but went and picked up my aunt and uncle and we went to my parents house for a big dinner where we all ate too much. By 7pm or so, I was done for the day so my husband brought me home.

I went to bed early so I could recover and get to today's planned activities. These consist of buying a birthday present for my younger nephew who hit the ripe old age of 9 recently and recovering from the past two days. He found what he wanted on Amazon so it is now en route to him and I got to stay in my pajamas. Everyone else has taken a shower and gotten dressed.

My brother started calling me 'pajama girl' in that loving and sarcastic sibling tone - evidently I wasn't setting a good example for the kids. I will take a shower shortly but the cat is stressed because too many children have been interrupting his naps and right now he is snuggled up against me to recover. When I over do things (like I have for the past few days) I need time to recover from the exhaustion.

I have probably less than an hour and then I will take my younger niece and nephew to the used bookstore and a little local shopping. This will be local shopping, where you park the car in the center of town and walk around to the different stores - like in the old days. No malls will be involved.

Then we will head over to my parents house for some more food - left overs. Because we didn't eat enough yesterday and there are lots of left overs. After that I will come home and put on pajamas again.

I did mean to go to the gym today but I don't think that is happening. Maybe tomorrow. Or maybe I'll be pajama girl again.