Caught a Bug

Sadly, the title of this post does not refer to a glowing firefly in a jar. The warm weather has indeed come early this year, but not quite that early. No, I mean the aching body, runny nose, incessant coughing kind of bug. You see, college students are always coming down with something, and its only a matter of time before a professor catches a virus and brings it home to share with his wife. I can only say, "Really, honey, you shouldn't have."

An experienced lupus patient should know how important it is to pay attention to the progression of any other illness, considering that her immune system behaves so badly under "normal" circumstances. I say "should know" because in my continual efforts to be strong, I completely ignored that I was becoming quite sick. Luckily the wise professor insisted that I go to the doctor, and the antibiotics eventually had me feeling better, but clearly this is another one of those lessons I will never learn. (My husband is probably rolling his eyes as he reads this part.) The problem is that I do not ever want to be perceived as a hypochondriac, so I tend to err in the opposite direction. ("It's just a flesh wound!") Honestly, without someone to watch out for me, I can't imagine what kind of trouble I'd get myself into! So why can't I learn?

I think that in my attempt to live like a "normal" healthy person, I had fogotten that I have an abnormal immune system over which I have no control. (No control?!? I HATE not having control!) What I'm about to write here may sound odd, but if I think about my immune system as separate from me - separate from the essence of who I am and how I define myself - then I stop feeling like I was "weak" to get so sick. The immune system is the guilty party - my evil nemesis - and I was betrayed. I am still strong, I just have a really pathetic excuse for an immune system. If I can think of it this way, I find it easier to believe that I am still a strong person, but I just happen to be stuck with weak body. That weakness does not define me, though, it is only a little part of me, and I am so much more than my lupus.

So the next time you are under the weather, try to remember that it's not weakness to be sick, it's just that dastardly immune system, complete with evil black moustache!

Oops, I overdid it again!

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Chronic illnesses create limitations, and learning to find the fine line between “okay” and “too much” can be difficult at times, as can remaining mindful of the line. I, myself, have a tendency to willfully ignore my limitations. After a few days of feeling miserable, I get tired of resting and taking it easy, and the moment I start to feel a little bit better, I’m off and running. I know I’m doing too much, but I can’t help it – so much has been left undone for days. I feel a need to accomplish things.

When I was first diagnosed with lupus, accepting that I now had limits and learning those limits was an immense struggle for me. The lack of cooperation from my body angered me, and the idea that I had to hold back frustrated me. I didn’t want my life to change. I had plans and I didn’t want anything interfering with them, especially not some stupid illness. Of course, I really didn’t have any choice in the matter. Change comes whether we like it or not.

I would like to say that I have developed a foolproof method for determining these limits and sticking to them, but I haven’t. I have learned that overdoing it does have a cost, but only you can decide whether that cost is worth it to you. For example, when my family comes to visit, overdoing it is worth the expense. I just know that after they’ve gone home I will have to take some time to recover. Or if I know that tomorrow is errand day and I’m going to need a lot of energy, then working hard all day to get the housework done probably isn’t worth the expense. The housework can wait until after I’ve recovered from errand day. The dust will still be there in a few days, right? (Sadly, yes.)

Experience has taught me that the danger is in never allowing any recovery time. If I continually overdo it and never allow my body any recovery time, I will end up in a bad flare, my body and my immune system will rebel, and I will end up in bed (in the best-case scenario). Sometimes I am so involved in what I’m doing that I don’t see the signs that I’m overdoing it, but usually my body tells me, if I’m willing to listen. Then I need to pause for a moment and decide, do I continue, or can I take a break and rest here for a moment? Sometimes even just a brief break to sit down and take a few deep breaths is enough to keep me going for a little while longer. There are times when a longer break is necessary, and then I have to decide if I’m willing to do that, or if I want to continue and just pay the price over the next few days. Making a conscious decision is important, though, because ignoring the messages sent by my body will only lead to trouble.

Of course, I still get myself into trouble sometimes, but I don’t do it as often as I used to. I have become more mindful of my need to take a break or to put my feet up and rest for a while. Several times recently I have actually said out loud, “Okay, I think I’ve done enough now,” and that’s real progress for me. (Usually I had to be threatened and dragged away from what I was doing.) Being mindful of these limits and working within them may help keep those flares under control. As aggravating as it can be to rest while there is work waiting to be done, it’s much more aggravating to be unable to get out of bed for days, and I really hate it when I don’t even have the energy to laugh! So try to take it easy every once in a while, and save some energy for love and laughter.

Rough Morning?

Monday morning seems like an appropriate time to discuss how difficult it can be to get out of bed in the morning. I'm having such a hard time of it this morning that I'm typing this post on my Blackberry while still tucked away under the covers. I definitely had one of those "Do I really have to get out of bed now?" moments this morning. Luckily for me, the answer was "no," but for those mornings when the answer is "yes," I have discovered a few tricks that may help make the departure from the comforts of bed a little less difficult. Before I tell you, though, I'm going to get myself out of bed because it's time for some coffee.

Okay, I'm back, with my cup of coffee here next to me. I won't tell you how long it's taken me, but I will say it's been a while. Some mornings lupus and fibromyalgia just make it hard to get moving. In the first years of my illness, having pets to feed got me out of bed every morning, and while I didn't always appreciate it, they were one of the few constants at a time when my life had been turned upside down. While I highly recommend having a furry companion, I realize that pets are not for everyone, which is why my little tips will have nothing to do with critters of any sort.

Back when I was still working at a "regular" job, I discovered that my alarm clock was terrifying me awake. Anything that sounded like my alarm clock made me jump and set my heart racing. So I decided it was time for a new alarm clock, and I found a clock/radio with a dual alarm and adjustable alarm volume. Thankfully, that did the trick, and I no longer went into a panic every time I heard an electronic beep. This dual alarm system has become essential for getting out of bed on those mornings when I have somewhere to go.

Having a dual alarm system isn't the whole trick, though. The key is in the music that you choose for the first part of the alarm. You have to choose something you will want to listen to, something that will make your ears perk up a little. Set that first music alarm for 15 to 20 minutes before you need to be awake, and set the volume at a level that will wake you up most of the way, but will not send you leaping out of bed. What you want is to lie there in bed, slowly waking up, without feeling as though you have to be getting out of bed right this moment. Take this time to enjoy the music that you've chosen. Try to ignore all the things that need to be done that day and just rest there in bed for a little while longer. Go ahead and pull those covers back over you head, if you want. Just don't turn off or ignore the music. The idea is that by the time the second alarm goes off, you are ready for it. This may not work every single morning, and really awful mornings may still be awful, but I have found that this trick works really well for me most of the time. Even on the mornings when this doesn't really work, I think it's still better than feeling guilty over hitting the "snooze" button.

There is another trick that I use in coordination with my dual alarm system: my heated mattress pad. If you do not have one of these, I do recommend getting one. This is the time of the year when they go on sale, so you should be able to get a good deal on one. (Make sure you get one that has coils that are supposed to be somewhat comfortable. I also put a regular mattress pad over the heated one so that I don't feel the coils so much.) You may even find that the heated mattress pad helps more than the alarms! Morning stiffness can be miserable, but I have discovered that the heat from the mattress pad helps alleviate some of that stiffness. So when the music starts playing in the morning, I reach over and turn on that mattress pad, making sure that it's set on high. Unless you're already sweating, trust me, and turn it all the way up. Use that mattress pad like it's a gigantic heating pad. Obviously you have to have time for it to warm up that much, which is why this works well in coordination with the two alarms. You need to allow some time for that heat to work. It won't take away all the stiffness, sadly, but hopefully it will help some. I am convinced that the money we spent on ours (we got it on clearance around this time of year) has been worth every penny because it has definitely made getting out of bed a little less difficult.

I may never "bound" out of bed again, but I have found that these tricks make mornings less rough. If you try either of these methods, or if you have tricks of your own, please let me know. We can probably all use all the help we can get, right?

Speaking of help, it's time for more coffee. I hope you all have a good week, and don't forget to laugh!

A Little Catching Up

My goodness! I cannot believe that I have not written anything here since August! I guess I have a lot of catching up to do, so let's get to it.

In August, my husband, a German professor, left for Germany. He was taking his German students on a foreign term to Germany. I was left to manage the rest of the fall harvest on my own, which kept me very busy. Then I went off to Germany myself, to spend some time there with my husband. We returned just before Thanksgiving, and then there was the holiday rush. Those of you who have lupus can probably imagine how all of this left me feeling. I think it took the entire month of January for me to recover. (We had a great time in Europe, though, and I don't regret a minute of it.)

By the time February came around, I felt like I had to get moving and make some progress with my Etsy business, so I have been sewing and designing my heart out. My enthusiasm is always stronger than my body, though, so I spent many days trying to recover from the previous day's efforts. Even after nine years of living with lupus, I still haven't really learned to pace myself. I think I may be too stubborn to ever learn that skill!

Now it is suddenly March, and I am so relieved that the winter has passed and that spring is on the way. The birds are singing, the sun is finally shining today, and the crocuses are bursting from the ground and opening up their lovely buds. Of course, there's also a ton of work to be done in the yard, so I anticipate many days of soreness ahead of me. Nonetheless, it will feel good to be outside working in the sunshine (fully covered and wearing sunblock, of course) once again.



The sunshine, the singing birds, and the coming blossoms all help me to shake off the winter woes and look forward to a season of happiness despite the struggles. So get out that sun hat, get outside, listen to those songbirds, and breath in the smells of spring. We've made it through a long winter, and now it's time to let go and laugh out loud!

Getting Organized

For me, one of the most difficult parts of living with lupus is the way it effects my schedule. Put simply, I like getting things done, and lupus can make that difficult some days. Every day I make a list of the things I need to get done, but sometimes everything doesn't get crossed off. This can make me feel both frustrated and guilty about not doing my share. The list is the only way I can remember things, thanks to brain fog, but it can also pressure me to do more than I should. That's a problem because I already stand a pretty good chance of doing too much. Recently I read a blog post that may be helpful.

On Heidi and Seek Ethical Fashion I discovered a post titled, "A Little Organization Tip for Non-Organizers." Although I am definitely not a non-organizer (labeled containers in a row make me smile), the idea presented here is more about accomplishing your goals without feeling daily pressure to cross everything off of that list. While the post is about running a small business on Etsy, the system can easily be applied to whatever it is you need to accomplish. You even get to color! Quickly summarized, the system focuses on weekly goals. These goals are then broken down into blocks of time. For example, I want to update my blogs more often, so I would take the weekly goal of updating, and divide that into blocks of time. Maybe half an hour for research and half an hour for writing. This would give me two 30 minute blocks which I could accomplish at any time during the week. As I make progress, I could color in one block to show that it is done. So, when I've finished the research half hour, that would get colored in. If I wake up feeling terrible one morning, that's okay. I can complete my block some other time.

How far you take the idea is up to you. If you're a bit OCD like me, you're probably already imagining separate color-coded pages. However you imagine it, the system can be adapted to your needs. Hopefully it will help you feel less pressure to get those items checked off every day and to focus more on working in those blocks of time when you feel you are able. If you are interested in this system, visit the Heidi and Seek blog to check out the whole post, complete with pictures.

If you decide to try out the system, please feel free stop back here and leave a comment about how it is working for you. I hope it helps. I will also let you know how it is working for me. I may keep my daily list for all the simple things I know I can easily cross off (like sweeping up cat litter), and use this system for other goals, like, yes, updating my blog more often!

Best wishes to all of you, and don't forget to keep laughing!

My Amazing Sister

Sometimes you need not look far for inspiration. While I suffer from lupus, my younger sister lives with fibromyalgia. Being of the same stubborn stock I am, she has never let this deter her. Not one bit. She remains active by canoeing, playing ultimate frisbee, and running, among other things. She is always there to listen and empathize, or share a much-needed laugh. I love her deeply for so many reasons, and I admire her greatly for her strength and persistence.

As if she weren't kicking my butt already in the area of physical activities, she recently sent this message to family and friends (hopefully she won't mind me sharing this with you - hi, sis!):


"As many of you know, I have a hard time sitting still and am always looking for a new challenge. This year's major event for me will be the Chicago Marathon on October 11th, and I am running for charity. I am raising money for the Lupus Foundation of America, and would love to have your support.

My amazing, wonderful, and inspiring sister (hi, sis!) was diagnosed with systemic lupus eight years ago. My sister is one of the strongest people I know, so I'll be running to finish this marathon for her.

My fundraising page (http://www.firstgiving.com/carrieeaton) will have updates on my progress, as well as a secure way to donate right online. Any contribution will be a great help and will serve to fund vital research to find the causes and cure for lupus, to educate health care professionals about development in diagnosis and treatment, and to provide support to individuals affected by lupus.

I'm excited to run the marathon in my hometown ... [and] don’t forget to check the
donation page for updates on my progress (and suffering)!"


What a great sister, right? Sorry, but you can't have her. She's mine!

While we can't all run marathons, we can all be reminded to keep challenging ourselves despite our illness, even if the challenges are only little ones. Whether it's learning a new piece on the piano, or finally learning to catch a ball with a mitt, I find that the most important goal is to keep finding new challenges, to keep learning, and , of course, to keep laughing.

So here's to my strong little, er, younger sister who continues to inspire me by her refusal to let fibromyalgia slow her down. Love you, kiddo.

Music to Soothe the Savage Beast

Living with a chronic illness is often difficult, and finding coping mechanisms is an important part of learning how to live with something like lupus. Recently I was reminded that music is one of my most important coping mechanisms. Whether you listen to classical music, rap, heavy metal, alternative, or whatever, music can reach into your soul and affect your emotions. Since I have widely varied music tastes, I can almost always find something to suit my mood, or to lift my spirit.

I learned to sing at a very early age. My Mom noted in my baby book that my first song was not something like "Mary Had a Little Lamb," but was rather "Love Will Keep us Together," by Captain & Tennille. (Not sure what that says about my taste, but I was a little kid.) Music has always been part of my life, from roller skating in the basement to Meco or the Xanadu soundtrack (again, see the previous sentence), to singing in school choirs. On longer drives in the car, my dad would blast ELO on the stereo, and we would all sing along, everybody taking different parts. ELO can still make me happy. I just put on a favorite song, like "Shine a Little Love" (see it on YouTube here), and sing and clap along. I might even dance a little if I'm feeling up to it. Hey, that YouTube link just started playing on my computer! I feel a little better already. (*clap, clap, whooooo!*)

On days when I have that fabulous lupus headache, I turn on Chopin, Mozart, Beethoven, or one of my other favorite composers. The music soothes me and takes me away from my pain. (-Okay, wait a second. YouTube just suggested I watch the Xanadu video. How does it know?!) You probably have music that does the same things for you. Even if you're stuck in bed, you can still listen to music, and maybe sing along.

So, turn on that radio, grab your favorite CDs, find your old mix tapes, or dig out those LPs, and, as Brian Wilson sings, "Add some music to your day." And don't be afraid to sing or dance, even if it's just in the shower. Out running errands? Swing by the Hallmark section and start opening those musical cards. You'll laugh, I promise.

Now you'll have to excuse me. Since I don't have a headache today, I am off to put Sirius 1st Wave on the stereo. I know I'll be singing along. Maybe I'll even dance.


PS: After I posted this, I went back to the YouTube browser window, and discovered it was recommending this: http://www.youtube.com/watch?v=0gt3grMaHZI&NR=1. OMG!!!! YouTube has obviously been in my CD collection. Scary.