I have shared RA Guy's Roller Coaster post here before. If you haven't seen it, please check it out because it is exactly how MY RA feels much of the time. Up and Down, up and down. I am best managed by a solid routine- but my "routine" hasn't been solid now for....by the end of this week, 18 weeks. That means that my roller coaster is moving at an even higher rate of speed. I could sit here and give you a litany of the aches and pains, but I don't even want to go there. You don't deserve to be bored that way and the less I think about it, the better. One of the least pleasant side effects of this, however, is my *stupid* insomnia.
I have been up since 2am. I have dried my still-wet-from-last-night's-shower hair, had a pot of Dunkin Donut's Pumpkin Spice Coffee (super yum, not sure if the half pound is worth the price of a full pound of regular, but I digress), decided what I want for dinner- and that it will require a stop at the store, read some stuff for work, played with the dogs, put them out, brought them back in, fed them breakfast, gave them treats, fiddled on Facebook, had a bowl of cereal, worked on my personal calendar, and now- when I would normally be getting ready for work- I am ready for a nap instead. Oh- and I am working a minimum 10.5 hour days the rest of the week. Needless to say- it's going to be a long one. I still have to get dressed, flat iron the hair (it has a bump from putting it up wet), cut my mango and kiwi for lunch, and send some notes from my reading to my work email address. My list of work to be done is pretty extensive this week so I will be making notes of my notes. I have deadlines upon deadlines- punctuated by meetings. The meetings greatly cut into my "real" work time.
All of this just serves to make me cranky. Okay- crankier than usual. I can't remember the last night I slept a full 8 hours. Here's the thing. While for many years I slept about 4 hours a night- that was by choice. When it is not by choice- and when it is closer to 3 hours- I don't like it. It's just another of those " I no longer control my own life" things that having a chronic illness brings. I hate being out of control. I don't like feeling powerless, especially when it's my own body and my own life that we are talking about.
So my question is this- what do YOU do when you feel like your illness is the one who has control over your life? How do you take back your power over this disease?
I am thinking I can slip in a 45 minute nap right now but I will be checking back to see if you all have any ideas.
I have been up since 2am. I have dried my still-wet-from-last-night's-shower hair, had a pot of Dunkin Donut's Pumpkin Spice Coffee (super yum, not sure if the half pound is worth the price of a full pound of regular, but I digress), decided what I want for dinner- and that it will require a stop at the store, read some stuff for work, played with the dogs, put them out, brought them back in, fed them breakfast, gave them treats, fiddled on Facebook, had a bowl of cereal, worked on my personal calendar, and now- when I would normally be getting ready for work- I am ready for a nap instead. Oh- and I am working a minimum 10.5 hour days the rest of the week. Needless to say- it's going to be a long one. I still have to get dressed, flat iron the hair (it has a bump from putting it up wet), cut my mango and kiwi for lunch, and send some notes from my reading to my work email address. My list of work to be done is pretty extensive this week so I will be making notes of my notes. I have deadlines upon deadlines- punctuated by meetings. The meetings greatly cut into my "real" work time.
All of this just serves to make me cranky. Okay- crankier than usual. I can't remember the last night I slept a full 8 hours. Here's the thing. While for many years I slept about 4 hours a night- that was by choice. When it is not by choice- and when it is closer to 3 hours- I don't like it. It's just another of those " I no longer control my own life" things that having a chronic illness brings. I hate being out of control. I don't like feeling powerless, especially when it's my own body and my own life that we are talking about.
So my question is this- what do YOU do when you feel like your illness is the one who has control over your life? How do you take back your power over this disease?
I am thinking I can slip in a 45 minute nap right now but I will be checking back to see if you all have any ideas.
1 comment:
I've also had intermittent trouble with insomnia over the years, Jules--and I've had many, many 4-hour nights by choice as well. At least, I did when I was somewhat younger (in my forties) and I loved my job so much I was happy to put in 14-16-hour days on a routine basis. The difference between those short nights and nights where I cannot sleep or sleep only restlessly is profound. And of course, the lack of sleep is terrible for someone who has RA or, worse (like you) RA and fibromyalgia.
So what to do? Go to bed earlier? Take a warm bath before bed? Don't watch TV in your bedroom? Have a cup of cammomile tea with a little honey before bed? Take some melatonin? Or perhaps some valerian? Make sure your room isn't too warm or too cold?
They all might help.
On the other side are actual sleeping aides, like amiltriptyline, nortriptyline,trazadone and the heavy hitter, Ambien. You might also consider taking a really hard look at the workload you're staggering under. With the amount of daily stress you're dealing with, it's no wonder that you drag home in the evening, finally manage to get into bed and then can't turn "off" long enough to fall into a decent night's sleep. And I do know, Jules, how difficult it is to actually make changes that cut back on workload once you've proven to the boss that you can handle, literally, tons... the work of four people, alone and with ease. It's hard to cut back when you need the money to pay bills, etc. I do know this. But if you were to suddenly get REALLY sick, with your RA and fibro getting so bad that you couldn't work at all because you'd pushed past your limits for so long... well, what then?
Please take care of yourself, my friend. I'm sending all the warmth, comfort, peace and yes, Zzzzzzzz's that I can your way.
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