Whew, what a hectic week. I've been pretty badly crashed but still running around - bad combination, right? Now, there's nothing major for the next few days, and I'm just breathing a big sigh of relief and retreating to the couch.
My mom was visiting this week. It was wonderful to see her, and she was a lot of help, too. Like she said at the train station today, she and I can just talk forever! We never run out of things to say to each other, and we understand each other so well. Normally, we get on the phone and spend an hour talking (no such thing as a quick call with us), so it's a treat to spend a few days together. It's a shame I felt so crummy all week.
At one point this week, I glanced in the mirror while washing my hands and was stunned that I looked so normal. I was feeling horrible - sore throat, achy all over, exhausted - but none of that showed on the outside. I wish sometimes I could make myself look sicker when I feel so bad, so people would know how fragile I am at that moment. Sometimes it does show. I just picked my son up from the bus stop, and he said, "Are you feeling OK, Mom? Did you have a good nap? Your cheeks are all flushed." My kids know the signs!!
I did make it to my book group last night, just barely. After dinner, I drove my sons and my mom to soccer practice and came back home to lie on the couch for 45 minutes - no TV, no reading, no laptop - I just laid here with my eyes closed. I meant to meditate, but instead I was thinking, "Maybe I can make it to book group. No, I should stay home. I might be able to go. I shouldn't," and on and on. I did feel a bit better after the rest and did go, but I was totally wiped out afterward. Still, I enjoyed the social interaction, and we were discussing The Help, which was one of my Top Ten Books of 2009.
I'm pretty sure this crash is still from allergies. They're off the charts, even with allergy meds, Sudafed, and nose spray, and the high pollen counts made the front page of the newspaper today. Sigh...viruses triggering crashes in the fall and and winter, allergies in the spring...what's left?
Anyway, I'm planning a day of rest tomorrow and looking forward to some of our favorite shows on TV tonight (Flashforward and Grey's Anatomy). Then, maybe I will finally be able to tackle my 400 unread e-mails and that huge bin of mail sitting in the kitchen...
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
18 comments:
It's really a mystery, isn't it? I think I had a bad habit at one point of scrutinizing other people, trying to find some sign of why they were energetic and vital, while I was so often weak and strained. I'd think "that person looks the same as me, they're the same size as me, their complexion is the same, they don't look stronger or healthier... what's going on?"
I explained to a family member one time that when I seem distracted, it's often because I'm running all the continual diagnostics of the invisible symptoms, scanning for the beginnings of a headache, or the aching body or shortness of breath that tells me I should rest. We need some kind of a visible meter or readout that tells people, like in science fiction stories. Like, "How are you doing?" and a slot on our arm starts spewing out sheets of data on the present moment's condition... it's tempting to carry around a recorded message sometimes and play it for people.
That's great your kids are so in tune with it. My partner and I are like that...
"Top of head headache and slight crushing sensation in chest?"
"Yes, and bordering onto slight nausea?"
"Exactly".
It's sort of like a weird telepathy, sometimes.
Enjoy resting up.
D.
Ugh allergies, I know what you mean. We were cleaning out some boxes of books yesterday and I'm having a small crash today just from all the dust! Hang in there and I hope you get some rest.
I have been keeping everything closed up tight as it is windy and high pollen counts....worst in years I am hearing.
I just had this happen today where I was at the oncologist's office and the nurse said first of all, "Do you ever question why ~ you have Lyme, CFS, allergies, AND cancer? That is too much for one person to deal with! Then she said, You LOOK SO GOOD! And too young to have 16 grandchildren...anyway.....it is hard isn't it. People always say that~ sometimes I wish I did look bad. But of course, just like your sensitive son, those closest to us know when things are not good...
sure hope you are on the mend soon....
Sounds like you're doing pretty well Sue, especially after that long vacation.
My daughter read The Help and wanted me to get it so I did. It's what I'll read next. It takes me weeks, sometimes months to read a book because I can only handle about 10 pages a day, but I'm so glad you recommend it highly too.
Have you tried a neti pot for allergies? I was skeptical before trying it, but it really does seem to make a difference. The idea is it washes out all the junk (allergens) that gets caught up in your sinuses.
David
Hope you are feeling better soon. I wear my crashes all over my face -- deep circles and lines around my eyes.
"The Help" is definitely on my list of have-to-read. My book club did it awhile back, but I wasn't able to go. I hope you had a great discussion. The latest book I'm waiting for is "Water for Elephants." I've heard great things about it, too -- you'll have to keep your eyes peeled for my review sometime!
Maybe, just maybe, it has something to do with just having hit the ground running after a big road trip?
Oh, how I know those horrible trying-to-rest naps when you know there's more to do.
You take it easy now. It's great to have you back by the way.
D -
Yes, the constant mental monitoring is necessary but drives me crazy! I love your phrase - "running all the continual diagnostics"!
Renee -
I know I should have the house closed up tight,but in spite of the allergies, I just can't do it - I;ve been waiting months to be able to open up the windows again!! I love fresh air and really hate being closed up inside....but I know it's making things worse.
David -
I do sometimes use sinus washes, and I need to start again - thanks for the reminder! Problem is that this time, the worst part is my eyes - constantly watering and sore. And I am overly sensitive to eye drops - I've tried them all - they help for a day or two, then my eyes get red and itchy - the cure is worse than the symptom!
Shelli -
Water for Elephants is great! You'll love it - can't wait to read your review.
Jo -
Thanks for the kind words! Yes, I know I've done too much this week, no question. But from past experience, I also know that when these allergies hit this hard, it totally knocks me out. Usually, it lasts for about 10 days or so, so I still have a ways to go. It's nice to be back in the blogging world!
Sue
I see I've already commented and didn't remember -- how's that for feeling worse that you look! I can totally relate - the classic, 'but you don't look sick' that CFS presents. I hope you are feeling as good as you look quickly!
I think that's one of the hardest things about having an "invisible" disease...you are always battling the fact that you don't look sick at all. People start second guessing how bad you really feel. I know that has been the case for me at least.
Just remember you are who you are and what you feel is real whether you look sick or not.
I've been watching a lot of Star Trek TNG lately... haha...
"Run a level 3 diagnostic on the warp engines!"
D.
Hi Sue I hope you don't mind me popping by but Rachel from blue mug recommended I drop by.My daughter of just 16 has been ill on and off for what seems like forever but over last 2 yrs has become worse.No energy to walk round school some days,it was interesting to read about not looking the way you feel,I know what you mean!She had bloods taken this week and they are fine,she has lost lots of weight over the year and gets bad throats and has terrible memory and concentration,Doctor just said come back in a month.Great!!!Phoned a nutritionalist to have allergy tests to rule things out,just not sure what to do next!Will have a good read of your blog,love & light to you and your family Beckyx
Hope you're feeling better soon, Sue. I know what you mean about not looking as sick as you feel. I recently came across some photos of me from a year or so ago when my brother and his family were here, and I was having one of the worst CFS crashes I'd ever had that week. I could barely move. And yet, in the photo, I look just as perky and healthy as anyone else, excluding the fact that I was in bed. :) It made me realize how hard it must be for others to understand when it's so invisible.
I read (or listened to) the audio version of The Help. Excellent!
PJ -
Ha ha ha - don't worry - we all live in a brain fog world...and I don't mind if you comment twice!
D -
I love Star Trek TNG! Great show - I watch old reruns with my 15-yo son when he's home sick.
Laurel -
So glad you enjoyed The Help, too!
Sue
Craziest episode ever last night... Data starts having strange nightmares about the crew while the new warp engines refuse to function. The writers were having fun with that episode, I'm certain...
D.
I'm loving all this Star Trek talk! LOL!
Funny enough, whenever I get bummed about being sick I always think of Star Trek and the amazing technology. They can scan your body (no giving blood!) with a tricorder and tell almost everything instantly. Our own future may very well be like that. Seriously, just think of the changes in technology in the past 30 years. Now imagine 30 years from now. CFS/ME will be cured long before then, I'm confident! Now it's just about accelerating the rate of progress/discovery...
David (formerly anonymous David)
That would be a great title for a book on CFIDS! "Why don't I look sick!" That one statement says so much!
I hope you are feeling better soon.
Sorry I am so behind but I crashed for 3/4 days after my Tea Party last week. :-)
I agree with you, David! Science fiction can be pretty uplifting that way. Cheers to no more blood work!
D.
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