Thursday, December 4, 2014

The Cost of Tired

I have been missing here for almost a month. The girls know where I've been and have spent a lot of time with me there. Bed. Struggling to sleep and get rested.

Since coming back from a quick trip to Virginia at the end of October, I've felt myself slide. It's not that I'm in pain. There isn't "pain" associated with my RA. It's more a case of a dull ache here and there, but a dull ache every day. Maybe it's the left thumb or the right wrist or my right shoulder or my left pinkie finger. It's never enough to say, "Oh wow. Does that hurt." I can work through it, but it's there. And please understand that I'm not trying to pull pity out of you. I'm merely recounting what's going on so you know where I've been for the last nearly a month.

One of the markers for RA is fatigue. It figures. Your body is fighting yourself, attacking your joints and your joints are trying to fight back. That internal war just wears out your body, making sleep attractive. RA sufferers are a tired lot and when it gets into the severe area, where mine is, fatigue is as common as sunshine.

Also, we have been extraordinarily busy at work. Since Labor Day weekend, we have received two projects requiring weeks of work in the city. Now, I love the city. I enjoy driving in. You've seen my photos of sunrise over Lake Michigan and over Chicago. I've had a lot of overtime and more is needed as I do the reports for the field time. But, when you suffer from RA, getting up early, working late, being on your feet as much as I have been, comes with a price. That price is added fatigue on top of what you already experience just in fighting the disease. I come home after 12 hours on the job, get the mail, sit in the recliner, add a cat and boom, it's 2 hours later and nothing's been accomplished. I pick one thing to do, say a load of laundry, do that and then I have to sit, which leads to dozing, which leads to, "I should just go to bed". It becomes a sorry cycle.

This can also lead to depression because you just don't have the energy to do anything other than what absolutely has to be done. I'm out of pants. I have to do laundry. Dishes pile up in the sink until something smells. Then, it takes 3 days to do them because I only have the energy for a couple loads. At least they are stacked on the stove. That's good, right? Not really. I come in the back door and have to walk right by the pile which reminds me that I need to do another couple of loads which I don't have the energy to do.

So, I make a conscious choice NOT to eat at night or eat something which doesn't need much in the way of prep time or dishes. Peanut butter  or turkey and cheese sandwiches have been my meal of choice. Frankly, I don't want to fix anything and I've gone to bed without supper many, many times in the last month because I'm too tired to even unscrew the lid off a jar of peanut butter, let alone cook the hamburger I took out of the freezer so I could make meatball vegetable soup. It's a great cold weather soup and it's reasonably easy to make, but not as easy as peanut butter on bread which is harder than just having a cup of tea and calling it a night. Yes, my doctor is not pleased.

I find that I spend much more money eating out. As you know, Dunkin' Donuts is a favorite place and it's been frequently a lot in the last month. Just this week, I've gone there 3 times. A couple of donuts and a large hot tea and I'm set for hours. I also frequent Panera but breakfast there is more expensive as their pastries are more expensive. Still, going to both frequently means I've earned free drinks both places, which does cushion the cost. I also have another person almost "trained" at Dunkin' as to what I get when I walk in. Let's not talk about the healthiness of this breakfast choice.

Lunch is also a conundrum. If I'm out in the field, I can justify having lunch expensed to the client. It's built into the cost of the work. But if I'm sitting at my desk working on reports or processing data, I have to foot the bill for lunch. Recognizing my tendency to take an "easy" way out of procuring food, I bought a bunch of frozen dinners and yogurt which could be grabbing in the morning and eaten for lunch. The operative word in that sentence is "could". When I get up with less than an hour to be at the office, even grabbing a frozen dinner and yogurt doesn't happen. So, when it gets to be 12:45 and I realize I need to eat lunch, it's off to Panera or Subway. There are a lot of choices near the office, but those are my go-to places and are far more healthy than a lot of the other places. With a hearty lunch, I can go the rest of the day without feeling the need to eat, not that that's a good thing, mind you.

All of this leads to feelings of inadequacy. I can't care for myself adequately. I look at the girls. Am I doing right by them? I have Christmas gifts I want to sew yet looking at the patterns stacked neatly on the table in the living room leaves me feeling exhausted and I haven't done anything with them. My house is dirty. I need to clean. The best I can do is sweep a room with a glance and try not to write my name in the dust. All these things I want to do get tossed aside because I have no energy. And let's not consider the cost of breakfasts and lunches out. Uh oh. That's a very real effect of not feeling that I can adequately care for myself.

There was a doctor's visit on November 14th. We went over all of this. You know how, sometimes, you don't feel you can tell your doctor everything you're going through. You're afraid that you'll be labeled a scaredy-cat or obstinate or who knows what else. I don't want to be thought of as a hypochondriac. I know people who fit this description and that's not what I want to be. But I've come to see that telling Dr. Francis everything, all the aches, pains, bumps, non-eating, bad sleeping, falling asleep at my desk at 10 a.m. leads to frank discussions of what's going on and what can be done to help me. She put her hand on my arm and said, "You have to stop trying to tough it out. That's not working well, is it?" No, it's not. I think I'm more tired when I try to simply push on than when I admit that it's not working. I find it so hard to ask for help, so hard to say, "I can't do this".

There was, at the end of November, an article in an online RA newsletter I receive which talks about the tired. That appears to be the number one issue people with RA report. Exercise can give you more energy, but you need a certain pool of energy to begin with to even attempt the thought of walking or running or swimming or, man, that makes me tired just thinking about it. The author of the article said we know we are tired so we, wisely, scale back our expectations. So instead of, "I'm going to clean the house", we decide, "I'm going to clean the bathroom". But, when we are fatigued, cleaning the entire bathroom becomes an exercise in futility which leads to a cycle of mental shaming and sadness. She said that you need to pare a project down even further. Instead of "I'll clean the bathroom", it needs to be, "I'll clean off the mirror", "I'll clean off the sink", "I'll wash the floor". Yes, this may mean the project goes from what you could do in 2 hours to what I need a week to accomplish, but this is what I have to do.

I also need to give myself permission to nap. I can't do it at work, unless no one is here and both the post office and UPS have made their deliveries. Then I can turn off the lights and snooze. But on weekends, I need to give myself permission to say, "I'm tired. I'm taking a nap" and to sleep however long my body tells me I need to.

I also need to give myself permission to admit that this is a struggle and that some days I will win and some days I will "lose". I need to stop seeing those days as losses and see them as adjustments in the road I have to travel. Not blogging has weighed heavily on my mind. I have hundreds of photos to share and have written thousands of posts in my mind as I drift off to sleep. I sometimes think that, perhaps, an iPad would be a good investment because I could write a blog post while I am in the recliner, with my feet up. But I don't want the cost of an additional item on my Internet service.

There has been a change in medications in response to this. I'll detail that in another blog post as this one is getting long. I don't know if the medication has made any sort of difference in my quality of life. Dr. Francis said it could take 2-3 months to see a change. She says this heavy fatigue will lift. You know, the recent end of November cold was rather energizing. I didn't mind it at all.

I also added back into my medications a nightly sleeping pill Dr. Francis prescribed. I thought I was tired enough that I could fall asleep without it, but that's not the kind of fatigue which promotes sound sleep. I found myself waking up two or three times at night. Fractured sleep is not good sleep. Since adding that back into my regimen, I notice that I'm not falling asleep during the day, nor do I need a nap when I come home after work. The brain fog one gets when one is overtired is lifting.

So, if you've stuck with this post this far, this is what's been going on in my life. I can't promise I will be better. I need to carve out time to actively post and my days and nights have been akin to mashed potatoes. Bear with me. Life is a journey and I seem to have hit a slightly bumpy stretch of road.

Beverage:  Dunkin' Donuts tea


1 comment:

  1. Sounds like you have a lot going on.
    I am glad to hear that yo give yourself permission to put off doing things.
    That is important and you must not feel guilty about a lot of stuff.
    A day will come when you have the energy to accomplish some stuff.
    For now, be kind to yourself.
    The kitties and I send you hugs :)