Going through life needing a nap

That's me. Yesterday I went to bed around 10pm and woke up at 9am. Today I did the same thing. I did lots of nothing and got motivated to go to the gym. Now I need a nap. I also should do laundry but that may not happen. Or I will con talk my husband in doing it.

The dilemma of the day is do we cancel on a friend who was coming for dinner because I am not sure I am up to it. I'm not sure going out to dinner would be any easier either. And I am not sure we are going to the beach tomorrow even though I really, really, really, really, really, really wanted to go.

If I do too much I get tired. I mean really tired. I mean able to sit on the sofa and watch bad TV without caring for hours.

I work three days a week which means I have to get up and go to work on those days. But then I have to get caught up on my sleep. I am told that you really can't make up for lost sleep but I try anyway.

Doctors have said to me - are your thyroid levels okay, are you exercising too much/too little, are you doing too much, are you taking all your medications when you are supposed to, are you eating healthy, do I get enough iron/fiber/vitamins, etc? In other words, they aren't sure.

I have my own theories: Fibromyalgia causes fatigue. Rheumatoid arthritis causes fatigue. Living in pain is tiring. Stress is tiring.

In the meantime I'll take a nap and think about it.

A taste of my new life

Yesterday I had a fairly enjoyable day. Well not perfect but pretty darn good. Wednesday night was methotrexate injection night, where I keep my eyes closed and my husband injects me. We used to do this on Wednesday mornings but have found that I feel nauseous and pretty awful for a few hours so we decided let's switch it to evenings so I won't be trying to work through it.

So much for that idea as I spent the evening nauseous and woke up at 1130 at night running to the bathroom. I didn't throw up but I felt like I would. Then I slept off and on for the rest of the night. In the morning I was a wreck so I actually called in sick and spent the morning at home. I spent most of the morning feeling nauseous so I passed the time knitting on the living room couch (supported by the cat) with periodic forays out to the garden to do a little weeding. I had a banana and toast for breakfast so as not to tempt fate. Eventually I ate a some lunch and felt better.

My afternoon ended with a dentist appointment which was immediately counterbalanced by a mani/pedicure. So to counteract the news that I need some periodontal work, I have fuschia toe nails.

But I digress. I feel rested and got plenty of sleep last night. That is a taste of my new life I can get used to.

Balancing

As I now am happily employed at one job instead of two and have cut back at some volunteer efforts, I feel I am achieving some kind of work/life/health balance where I might be able to get enough rest as well as cash flow and not feel as if I'm running from one thing to another all day long.

My other job is almost at its end. I do need to tie up some last loose ends but that's it. I think they think I am leaving to work full time at another job but I'm not. Its because I have to cut back. This is very frustrating to me. But now its over.

I will miss parts of that job but life is all about balance. And my health is taking more of its share in this work/life/health balance than previously. I work my three day work weeks and then feel exhausted and need more rest.

I hope that my RA will get under control and I get more energy back. That would be nice. I go back to that doctor in about a month or so and will see how I am doing then. But for now I will have some sort of work/life/health balance (even if not mentally balanced).

A long weekend

We were supposed to go camping this weekend but didn't due to the weather so we had an unexpected few days at home. If anyone cares to think we are wimps I would like to state that it was snowing about five miles from the campground we were going to on Saturday.

We didn't go outside much because it has been cold, rainy, and raw but did make it into Boston to go the museum on Saturday. Sunday we cleaned out the basement some more - there is always more on that project. Yesterday we finally were able to grill outside. And my husband mowed the lawn.

One thing I have enjoyed is that I finally got caught up on my rest. Not just sleep but rest. During the week when I  have to get up three days in a row (which you may think is an easy week), I am struggling by the third day and really need more rest.

I could have gone off for the whole day yesterday and done fun things but am concerned that I will not make it through the next three days of work if I did. I needed another easy day at home. My plan was early dinner on the grill outside and then early to bed. That part worked. Then I woke up at 10, 1130, 2, 330 and 430 so I don't feel very rested. Today I will work and go to the gym after a bone density test and then I will go to bed early. I need the rest.

The cat is very miffed that his breakfast has been late for four days in a row. I'm not.

Day by day

These days I live things day by day. What I mean by this is I plan to have a normal schedule and be the normal me (as much as I can be considered to be normal) and then I start making alterations to my schedule based on how I feel. Some days I keep my schedule and some days, I make short cuts, go  home early and take naps.

Yesterday I was supposed to go out to dinner with family but I opted to stay home.  I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.

This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?

I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.

Now I know, nap first, motivate later.

Recovering after a very long week

In the past months, six or so, my energy levels are significantly down. I need to make sure I have enough down time and time to stay home and do nothing. I can tire myself out quite easily and then pay the price for days.

I had a three day work week this week but am exhausted. I tried to sleep late this morning but the cat sat on me because he wants food and the sun was streaming in from the room across the hall. Note to self evict the cat and close the other shades. I will try again tomorrow.

Emotionally and physically it was a tough week. I came back home after a 380 mile to visit my brother on Monday. Tuesday was another 2" (which turned into 10") snow storm that kept my husband and I home for the day. We reassembled the (damn) dryer after my husband's minor repair. I got a fair amount of work done as well. I even snuck out to the gym in a lull in the storm.

Wednesday, Thursday, and Friday I went to work for six hours each. Wednesday I hit the grocery store on the way home, Thursday I met a friend for a walk, and Friday I went to the gym. Thursday night I was so tired and in so much pain in my feet and hips, I got in bed at 430, PJs by 6 and my husband cooked dinner which I ate in bed. I was exhausted on Friday morning.

Today I have a lunch to go to and am organizing a volunteer event that I won't attend. I am not attending because of pain and fatigue. Well guilt might get me to stop by for a few minutes.

That's just the physical side.

I also found out this week a breast cancer friend is facing a recurrence. We do not know details yet but the words chemo, radiation, and hospitalization have been bandied about. I will try to call her today. One friend talked to her and said she was really out of it but is still perky.

Another online friend passed away after a long fight with cancer. I have never met her but she was one of those people who was incredibly supportive to others in their copings with cancer. Dying way to young, younger than me.

Finally an old friend's husband with stage IV colon cancer has progression in his disease despite treatment.

I hope next week is better. My goal is to get a lot of sleep tonight and rest tomorrow. I also am home on Monday where I can take it easy then as well. The cat will have to learn to let me sleep in.

More research is needed

I ended my experiement and found that more research is needed:

First of all I should have done a bit more planning. I would have found that it is really 380 miles to visit my brother, not 300 miles. I turned on the GPS in my phone and realized I was wrong. Crap. Not a good way to start.

Then I should have brought more water with me. I brought one little bottle and ended up having to buy water - I hate buying water because of they are all the single serve ones (which should be outlawed as far as I am concerned).

I also have some questions for the FastLane/EZ Pass people. In Massachusetts, they are 15 mph lanes. In New York, they are either 20 mph or 5 mph. There was one toll plaza which alternated 20-5-20-5. Go figure. I have no idea either.

If one wants to go shopping on their drive, one should make sure the stores are open. I stopped at one outlet center because it was right off the highway, I wanted to run one errand and it was almost 1/3 of the way. The store is listed on the outlet center's website but when I got there, there was a little asterisk which said *Coming Soon. There was no asterisk on line. A little truth in advertising, please.

Another helpful tip is to combine potty breaks with refilling the gas tank. Its stupid to make two separate stops.

It doesn't help if you bring yogurt to eat in the car if you do not pack spoons.

The weather should have cooperated better. It snowed from Albany all the way through Syracuse not really sticking but enough to make visibility fairly poor and to have crap being thrown up from the road by the other cars. (And the stupid pedestrian who was standing on the median strip on I-90 at mile post 234 trying to cross in the snow storm, I hope you are okay. I did call 911 for you.)

I found that I needed new wiper blades as they did not clear a round area right in front of the driver's face so I needed to lean right or left, or stretch up or scrunch down to see during the snow.

Oh and on being tired, did I survive. When I arrived, I was exhausted. My right arm and shoulder were fairly tired. It is hard for me to drive with both hands on the steering wheel the whole time. One handed driving seems to work better (except when in the snow). Once I arrived, I was happy not to drive for most of the weekend.

Running around after four kids did tire me out all weekend. My brother made fun of me for going to bed early (brat). But I had fun with the kids too.

The ride home I was very tired and found my husband wasn't feeling well. I rested and then went out for a few essentials. We both went to bed early and feel better, but its snowing very hard so we are going nowhere. A good day to catch up at home and spend some time together.

Before my next trip, I will do more research, bring more food and water, and make sure I have good wipers. I'm not sure how I will do on a longer drive, even without snow.

An Experiment

Today I am experimenting. I am going on a road trip to visit my brother and his family 350 miles away. This is an experiment because my recent health issues make me tired, cranky, and in pain often. I am not sure how I will physically feel when I get there. (And for all you would be burglars out there, my husband will be staying home and will be protected by the cat in my absence.

I am sure I will be tired when I get there but it is important I see if I can. Its sort of a test for me. If it is successful, I will go on vacation this summer with a friend and visit Misty of Chincoteague which is a much farther drive. Its probably 500 miles and we will have to avoid New York City. (Yes we know Misty is no longer alive but I am sure her great-great-great-great-great-great grandchildren will be there and we can see all the other ponies.)

I also have a car load of stuff which my husband packed to bring to my brother. My little car is full of:

• a vacuum cleaner & extra bags
• two table lamps
• a 9x12 area rug
• a kitchen table
• a folding book case
• a TV
• a suitcase
• me

I think that's it. The suitcase apparently has to ride in the front seat with me. My husband packed the car and I haven't seen. I hope I can use the rear view mirror. My brother will unpack while I supervise. Loading and unloading the car are not part of my experiment.

I will report back on how I do with my experiment. In the last six months I have cut back on a lot of things that I do so this is a real test on how real my limitations are.

Semi retirement

I have decided my life has entered a phase of semi-retirement. Now this may change in the future if my RA will get under control and my fibro decides to go away or some other miracle occurs. This means I have cut back on many things that I do.

I no longer mind playing the wimp. I need to take my husband's computer to the repair shop because he got an evil virus which tells him the FBI wants him and they really don't (or at least not that we know). My husband will put the computer in the car this morning. I will drive over and double park out front and go in and tell them I need assistance getting it out of the car - waving my arm with my wrist splint on it. I used to suck it up and try to carrying things I probably shouldn't.

I have become a firm believer in PJs at 5pm. And if my husband can be 'persuaded' to cook dinner while I can be lazy.

I am no longer a supporter of the 35-40 hour work week. I support the 18 hour work week plus a few hours if I am able.

I no longer believe evenings are good for social events and activities. Weekends are just fine. I can't get in my PJs at 5 if I have to go out later.

Why am I semi-retiring? Because I need my nap time. Today I am being lazy. I have a dr apt at 945 and them am getting my nails done at 11. I also have to drop off the computer, go to the book store, and have a webinar from home, but that is plenty for today. I am exhausted this morning and I slept well  last night.

We had dinner guests Saturday night (take out Chinese) and a pot luck brunch on Sunday. Monday I worked for my requisite 6 hours and met a friend for a walk. Yesterday I worked my 6 hours and went to the gym for probably 75% of my work out. Then I ran an hour meeting. I got home and needed to go to bed. I was wiped out.

My goal by the end of today is that I am recovered and revived but it will take a lot of quiet time.

My long term goal is to get my RA under control and my fibro managed so I can resume having a social life. But for that I will have to be the patient patient.

Cutting back

In the past several months, I find I run out of steam between my two jobs, home life, social life, etc. I decided I needed to cut back on life - to allow more down time, naps, and sleeping in general.

Five years ago, I was happy to expand my life to add more work and do more things. That was great. I was through cancer treatment and feeling good and we even took a vacation to Acadia National Park for hiking and biking.

Then I had my gall bladder out and my back pains started. Now my gall bladder is healed and my back pains have a treatment plan so they are usually under control. unless I do things like stand, walk, sit, or lie down for any length of time. My life slowed down some. I stopped some of my more aggressive activities -  no more skiing down the fall line or bike riding for me.

I juggled and coped. I worked two part time jobs. I went to northern Wisconsin and rode a scooter on an island in Lake Michigan and enjoyed other vacations. I did volunteer work. I worked about 35 hours/week between the two jobs. I would usually work part of each weekend day

In the last several months, this has all become a problem. Between the RA and fibromyalgia, I need more time to rest between work and other obligations.

At my first part time job where I go to an office 15 hours/week. I have changed my schedule to be 3 six hour days one week, followed by 2 six hour days the next. This will mean meet my obligations but I get to have short work days where I can come home and rest as needed.

By the end of February my second part time job will be down to 10 hours. During March, I will take care of some specific obligations that were previously scheduled. Then as of April 1, I will not do any nights, weekends, or non-local events.

I can't. I tried. I go to a meeting at night and then need to sleep in the next day to recover. I need time off on weekends to recover from the week. I have six weeks left to get through before I can start my resting time. I will have a count down to see if I can make it.

Yesterday was a bad day

I did not accomplish much. I did not sleep well two nights in a row. My brain was in a fog all day. I tried to get some work done but did not feel I had enough functioning brain cells to get much done. I was also supposed to give a presentation 20 minutes away but it snowed so I cancelled.

I also had a fair amount of pain so I might have been cranky. There was a contractor here for a good part of the day removing some wood where we have some rot and found an carpenter ants nest. I hate those things. We have had a chronic problem with ants since we moved in. We had a pest inspection before we moved in and they found one dead ant and signs of mice.  We have a mouse terminator (a/k/a a cat) and thought we were fine. Then the ants started to show up. We could never find the source so we think we just did. The exterminator is due here in half an hour. Then the contractor will return as will the banging noises of construction. The cat and I will hide upstairs.

Last night I did get some sleep. While I don't feel 100% I do feel human for the most part - there might be some cranky pain filled b*tch buried inside. But I will accomplish work today and I will even get my lazy butt to the gym this afternoon. And maybe even cook dinner. Last night we had someone bring us pizza (in a snowstorm which is mean we know, but we did give him a good tip). I have slice mushrooms, chicken, and some brown rice so I will compile something.

Yesterday was such a bad day, when I called into work to say that I was planning on staying home today, they told me at work I sounded like crap. My husband made fun of the way I talked. Today can only be better.

My Attitude Needs an Adjustment

I have been thinking (which we all know is not a good thing) recently and wonder if I have turned into a 'poor me'  person - the bane of all patients. The next step might be hypochondria - which we really do not need.

So  my medical life has been in a downward spiral for some years now. Its now at the point where my doctors have said to me 'you have been through a lot'. Most of my ailments have been ones I have dealt with, tightened my belt and moved on. But this rheumatoid and fibromyalgia stuff seems to be getting to me more than other ailments.

I have met all my personal medical requirements:

1. I can't have an ailment that I can't spell or pronounce. 
2. I have a treatment plan (for RA so far but not yet for fibro as they need to treat one first and then the other so we can tell if its working or not but there is a plan afoot for fibro as well).
3. I have educated myself on both and joined online support groups.
4. I will attend a monthly local chronic pain group.
5. I can joke about it.

But I am not feeling my normal perky self. I went to a party Saturday night hosted by an old friend. By 'old' I mean since junior high. She has had rheumatoid since 2005, which is about when my health started its downward spiral. She very rarely talks about it. It is basically under control. She gives herself injections (something I am not sure I could do) and has been on a variety of medications. She doesn't seem to let it bother her as much as mine bothers me.

Before her party started, we managed to have a few minutes to talk about it. She said it took two years to get a diagnosis because she also had Lyme disease when her RA started. But she now really feels fine.

I decided I am jealous that she is in control of her RA (and still weighs the same that she did in high school). But two years to get it under control? I'm not sure I'm up to that.

But I digress. As I drove home from her party with my husband, I started to think. We left somewhat early because I got tired and was in pain. My friend and her husband were all going strong. I wanted to go home and go to bed.

I spent most of Sunday being lazy because I didn't have the 'oomph' to do much. While being lazy, I decided my attitude needs some adjustment so I can have more fun in my life and be perky again.

Stress is evil

So yesterday I had a bad day. It was compounded by stress. This was my day.

• I went to work and needed to fix an iPad (and I've never used one before).
• I needed to fix two co-workers easy email issues.
• I needed to fix another co-workers very difficult email issue.
• At one point I stood up from my chair, tripped, caught myself on the next cubicle wall which gave me a jolt that hurt my hip and back and shoulder.
• I never got ANY of my work done.
• I left work and went to the gym where my hip and shoulder really hurt so I went home.
• I had cheese and crackers for dinner.
• I had a box of stuff that I bought on line ready to be taped up and returned with all the paperwork and my husband thought he was being helpful and unpacked the box, threw out the packing materials and paperwork.
• I went to a meeting which was full of dissent and disagreements.
• I came home and was VERY stressed out, not coping well with the stress at all. 

Today will not help. I have an 8am conference call to work on a client's database. At 9am a contractor is showing up to fix our basement door (so its no longer a burglar's dream). I also have to get out a mailing for work, work on our Christmas cards, and go to the grocery store. I was supposed to go out to dinner as well but I declined.

I think I am not coping well because I am tired, I get tired easily, and pain seems to be dominating my life which is living with fibromyagia. I need better ways to cope to reduce stress. Stress sucks. Maybe I need more naps.

Will I always compare fatigue now to cancer treatment fatigue?

Anyone who has gone through chemo can tell you about fatigue where you sit stupidly on the living sofa/arm chair staring blankly at a television screen not remembering a thing you watched. Fatigue where sleeping late turns into an afternoon nap. Being so tired you felt like you were hit by a truck upon waking up in the morning.

Last night I went to a craft fair where I had a table (anyone want to buy a hand knit or crocheted scarf?) that ended at 9pm which is VERY close to my bedtime these days. As I was driving home I thought I was really tired, like chemotherapy tired or end of radiation treatment tired. But I am not in chemo or finishing radiation, I am living the rheumatoid/fibromyalgia life where fatigue is part of the package. How fun (not really).

Then I started thinking again (I know I really shouldn't do this - think that is) and wondered am I forever going to compare my level of fatigue with how I felt during cancer treatment? I mean I used to think I was feeling exhausted and tired like I had skied hard, or climbed a relatively large mountain, or spent the day running around on the beach. Now I just compare it with chemo or radiation fatigue. Well grr.

I think my life needs a better perspective so I can skip thinking about chemo and radiation (I am sure that will be SO easy to do) and think being tired after something fun. And I'll have to take up napping and refine it to an art form.