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.

A Post for Sick People

As a follow up to my earlier post for Friends of Sick People, here's a post for my advice for people who are sick.

As a patient with an icky medical diagnosis, you need to remember the most important person you need to take care of is you. I know you love your children, spouse/partner, and other people close to you but you need to focus on you for a bit. You will need more rest and care than usual. You will spend a lot more time at doctors and other appointments. Any time when you are not at work you will probably be focused on your (lack of ) health. Nap time!

You may find the need to set some rules and requests for other people. You are not being rude, you are letting other people know how they can best help you. You need to rest and take care of yourself, go to doctor appointments (and then recover from them).

Personally I decided I needed to limit social visits and phone calls. Newly diagnosed with cancer, and a cascade of additional medical issues, I decided I was not going to answer a thousand phone calls, texts, and emails asking the same (damn) questions and decided I would provide information for others in my blog. If anyone wanted to know how I was doing, they need to read my blog (unless you are my parents, they are allowed to ask me questions or my husband who went with me to all important appointments). If people wanted to come over, their visit had to be short.

People often want to be helpful but are unsure how they can help. If someone says anything about any kind of help, you can give them concrete ideas on what you need. A casserole for dinner? Help with laundry? Do you need someone to help get your children to school on some days or maybe even getting you to the doctor?

And its not just the physical issues but also your emotional self. At my second cancer diagnosis I decided I needed emotional support and joined a support group before my second surgery. I wasn't going to let cancer suck any more enjoyment out of my life.

If you feel you need more emotional support, start with your doctor or a social worker at your local hospital. They will have access to information on where you can find help. In addition, look for local support groups through your church or local support centers. And the stress? I'm not going there.

It is important to remember that the most important person, emotionally and physically,  is the one with the ailment.  Don't forget!

I Wasn't Up To Blogging

Yesterday I was not up to blogging. I meant to blog. But I didn't. I couldn't. I couldn't come up with anything to blog about because I was too tired to think.

I haven't been sleeping well for the past week or so. I have been very tired and not able to nap for some reason. And every morning either I had to get up and go somewhere or I just woke up and couldn't fall back to sleep. Thursday afternoon I was so exhausted. I wanted to nap but couldn't. I also had to take the (EK) to the vet. I just wanted to sleep. Thursday night even thought exhausted I didn't sleep well.

Yesterday morning I also had to go to an appointment with the SSDI doctor as part of my disability application. I was kind of dreading it. I didn't know what I was going to be asked. I didn't really know where it was. I was really tired. But my husband took the day off and drove me. He went out for breakfast while I talked to the doctor.

My appointment actually went pretty well. The doctor, a psychiatrist, wanted to talk to me about my depression and anxiety issues. I was so exhausted so that wasn't that hard to talk about depression. I hope it helps my application.

Once we came home, I got to lie down for a while (and watch bad TV - which is what I call anything that is instantly forgettable). I did talk myself into going to the gym because I didn't go for the last two weeks because we were away and I told myself otherwise I would have to go today to make up for it. However, I didn't get through even half my work out. I was too tired to finish my cardio (when you feel like you are falling asleep while on the stepper, its time to go home.

After I got home, I slept for about 45 minutes. Magic! It was wonderful. I felt so much better. Then I slept pretty well last night. Sleep is a wonderful thing so today I feel almost like a normal person.

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.

A Hangover

We all have had a hangover or few in our lives. Admit it, unless you are a lifetime non-drinker you have had a hangover. Alcoholic hangovers happen. We all know the feelings - dehydrated, headache, general crappy feeling.

But with RA and fibromyalgia there are other hangovers - activity hangovers. This happens when I, or anyone with these diseases, attempts to be a normal person. You act normal for one day and then spend three days paying the piper, so to speak.

Someone else wrote about activity hangovers the other day which made me feel like I am not alone. She writes about going to a party and then feeling the pain. I, on the other hand, don't even have to go to a party, I can just have a good day, try to be normal, and then spend a day in bed. If I'm lucky, its not multiple days in bed.

I am not sure what I have done for the past few days but yesterday I took a 2.5 hour nap and then slept for 8 hours last night. My pain management doctor says that sleep is good and very beneficial. It allows my body to heal. But I will still discuss it with my primary care when I see her.

Anytime I try to be normal I end up taking naps and then have bad days with 'activity' hangovers.

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.

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. 

Perkiness and fatigue

Sometimes I wake up and am very perky. This annoys my husband to no end so that if I feel the least bit perky I make sure he knows (I love aggravating him sometimes - part of a happy marriage is being able to annoy your spouse).

Recently I have been dealing with fatigue. I have no idea why I have so much fatigue but I do. I have had three two hour plus naps in the past five days. This includes sleeping fairly well at night. If this keeps up maybe I should go to the doctor... No wait a minute, I have enough doctor appointments these days. If I make another doctor appointment it will be because I am dripping blood or in so much pain I am unable to move (but then how would I get there if I couldn't move?)

Yesterday I had some killer muscle cramps at the gym and was bent over in pain as a result. My hamstrings went into spasm and I could not move. Another woman at the gym noticed and came over to ask if I was okay. I wasn't but I stood still for a while and then tried stretching my hamstrings for a while before I left. When I got home, I went to bed before having lunch. Once I ate, I slept for nearly 2.5 hours.

The 'best' thing about fibromyalgia is that pain gets magnified. So when you get muscle cramps, the pain gets magnified.

But I digress. If I get enough sleep, I might be perky (and if I am, I make sure my husband knows). But I still might need a nap later in the day. If I don't get enough sleep, I probably won't be perky. The real problem is when I am in too much pain to eat, sleep or be perky. Then it really sucks.

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.

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!

When all else fails, take a nap

Yesterday, after my therapist appointment, gym, and grocery store, I was so tired I couldn't watch TV. I was probably borderline exhausted. So I was smart. I took a nap.

Actually I didn't just take a nap, a nice little snooze, with my feet up. I slept like a log for over two hours. Then I went back to bed after dinner and slept again for eight hours. So maybe I was tired.

Actually I was so tired, I couldn't focus on much. If you can't watch a Lifetime Movie because you can't focus, you must be tired. In the past my criteria was if you are too sick to focus on the weather channel, you must be really sick. (I learned that lesson while stuck in a hotel with the stomach flu on a business trip.)

It is hard to focus and function like a human being if you are not fed and rested. Those are basic facts. I don't have problems with the food side of the equation (my inner size 8 is protesting) but I clearly have problems keeping up with my rest.

I have to work on my napping skills. The biggest problem that napping causes is not getting enough sleep at night. Your body needs along period sleep to get to that REM stage of restful sleeping. Its bad enough when I wake up in the middle of the night and am not rested the next day. But if I nap too much then I will have problems getting sleep at night.

Today I am tired again but not as bad. I may or may not nap again. It depends how my day goes. But I will make a point not to over exert myself.

Excuse me while I take a nap

So I am traveling, in fact on the way home. I got to see relatives I never see. But I don't travel well because I need to nap. I arrived Thursday evening and went to bed early. Then Friday I took two naps. Saturday morning I slept until after 10. Then I needed to lie down before going to dinner and then going to bed early. Sunday I also took a nap.

I interspersed my naps between fun things but still I was horizontal often.  I also found that I get very tired while driving.

I may have to curtail my driving adventures in the future, which is no fun. But today I did drive through the Elk and Buffalo prairie at land between the lakes on the TN/KY border. If you are in the area, its worth the stop. And I didn't have to get out of the car to watch a whole herd of about 40 buffalo.

That was pretty neat but now I need a nap as I sit here waiting for my flight. Maybe I am turning into an old fart. (No don't answer that, because if you are my age, you might be an one too.)

Cancer doesn't have a holiday

If you have cancer and its Christmas, its not as fun. Holidays are supposed to be the time of families, friends, food, and celebrating, and depending on which holiday, gifts. But cancer doesn't take holidays. You can't take a day off from cancer. You can stick it in the back of your brain for a bit but it always comes out, some how.
If you are in treatment, you can try to participate in holidays. But chances are you won't have much fun. The year I was in treatment, I don't remember Thanksgiving as being that significant. But I don't think I did much cooking as usual because I felt like crap. Then Christmas wasn't much fun either because I had just had another lumpectomy because of a suspicious area.... I remember being tired and not doing much shopping or cooking. I don't even remember what I did for my birthday that year except I believe I had a Taxol infusion and none of the nurses noticed the date.

If you are post treatment, you can celebrate another year of being around to enjoy it but it may be more difficult to celebrate. Depression is common after cancer as is PTSD, so it just might not be as fun as it used to be. Financially you might be able to be as generous as you were before cancer - many cancer patients can't work after treatment or take a step back from their career during treatment. And then there are the medical bills that take a crimp out of their wallet. Physically you may not be able to travel as much or participate in as many activities because of limits to your mobility or stamina.

If you know someone who is coping with cancer, take a moment out of the holidays to reach out to them to say hello, give them a call, or send a message.

Me, how am I celebrating this year? A cancer friend is coming over this afternoon to enjoy a bottle of red wine which aged for a decade in her wine cabinet. Christmas Eve I will cook and then go out for Chinese food with my family. Christmas Day there will be eight of us for dinner - until I run out of steam and have to go to bed. Next week will be more family to enjoy. My diet will wait until then. And I will have to nap a lot.

In the meantime, I have to go for blood work tomorrow and get organized for a doctor appointment shortly after the new year. And I have to go get a copy of the receipt for my eye glasses so I can request a reimbursement from the insurance company. And I have a doctor appointment tomorrow.

See, cancer people don't get holidays. We squish them in between medical crap. But we are still here.

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.

Napping is so underrated

Yesterday I took an hour and a half nap. Spontaneously. I mean I lay down to read a book and fell asleep solidly. The result was I woke up this morning at 330 and had a hard time getting back to sleep. I should stayed up later.

We have visiting family this week and are running around doing the things you do with out of town guests. Yesterday we did some Revolutionary War history - we live 2 miles from the Shot Heard Round the World. They do an annual reenactment at the crowd control time of 530am on Patriots Day which is next Monday, April 15 (as opposed to Patriot Day which is September 11). Yesterday afternoon was the dress rehearsal for the battle reenactment so they did it twice.

We wanted the British advance, curse at the colonials, insist they lay down the arms, and watched them die on the Battle Green and get tended by their wives and families - twice. But it was worth it. And we did not have to be some place by 530 am.

By the time we got home, we were all a bit tired and started to feel a little snoozy. I was the only one who slept.

Today we are off to do more tourist things - maple barn for brunch and some local wineries. I hope to make it to the gym later today but after wineries I might not be up for it. I might need another nap.

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.

A Lull in the Action

Yes I am enjoying a lull in the action. The action of doctor appointments that is.

I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).

What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!

Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful because I need a a day of rest between exercise. More time paying attention to the cat. I can unless he is sleeping. He's old and needs his 22 hours of naps per day. Quality time with my husband.

Maybe in my absence the hospital will renovate the ladies room in the lobby. It does need a bit of updating - probably because it is the most used room in the building.

But in the month of May, sadly, I have one of 'those' days where I have test, test, doctor appointment. I will blissfully ignore it between now and then. Ignorance is bliss in this case. Its also a case of avoidance.

Sleep

"Never underestimate the power of a good night's sleep."

I don't know who said that but it is true. Maybe its just a mattress commercial but I still like it.

I have never been the late night partier (well except college but who wasn't then and maybe a few other times but the statute of limitations is now well past on all my 20 something activities).

I believe, and have for decades, that 9 pm is a good time to go to bed for adults. A friend once accused me of living like a little kid by going to bed so early. My husband believes the same thing - I think mostly due to his military years and maybe because 21:00 looks much later than 9pm.

I have always been an early morning person. Even as a teenager I never slept until noon. Sleeping late would mean getting up at 8. The cat loves this because he likes a 5am breakfast. During the week we have an alarm clock with a back up cat alarm. Sleeping late and getting to work late was never a problem.

Usually I have slept pretty well with growing problems of insomnia over the years. Chemo treatment and stress are definitely insomnia problems. Back pain can make it had to get comfortable and sleep.

But now I no longer have any sleep problem - other than not getting enough. Both rheumatoid and fibromyalgia cause fatigue. In the past few months I have been able to take naps daily if I want, sleep ten hours a night. In the past few weeks I need both hands to count the number of times I have slept in past 8 am. I have also gotten more than 10 hours of sleep on many nights. Yesterday I woke up at 930 am.

Each week I find that by Friday I am exhausted from getting up to go to work three mornings. I can't get enough sleep during the week. By Friday night I need at least 12 hours.

I don't have enough time in my life to sleep so much. I'll have to give something up - like going to doctor appointments. That would give me more time for sleep. Ha. As if.

My daily nap

I have never been one for taking naps. I mean probably since I turned 3 I haven't been much of a napper. There was one semester in college where I found a daily nap meant I could stay out late at the campus bar, make it to my early classes at the same time, and keep my grades up. But I was also young then. During chemo, I did become a fan of napping for a while but then I got past that. And those naps were chemically induced shall we say.

Now I have again learned about the benefits of my daily nap. When possible I seem to fit in a daily nap of 2 hours or so if I can. Even if I go to bed early I still need my daily nap.

This is a side benefit of rheumatoid and fibromyalgia. I call it a benefit because my cat appreciates the daily nap as well.

There are people who do not understand my need for sleep and rest these days. Its not going to change anytime soon. Nor is it possible to work up to staying up and not requiring sleep. Evening events are tough for me, not that I have ever been much of a night owl but now you can pretend I'm either 2 and need a daily nap or 90 and need a daily nap.

For now, I need my sleep. There is hope I will get past this at some point but I'm not so sure.