I'm so far behind with everything related to blogging! I know there are various posts I've promised over the past few weeks (like the one on Lyme co-infections) and others I keep meaning to post, but I just haven't had time. Same with visiting blogs.
The good news is that I'm experiencing an amazing run of good health - 4 really good days in a row. It's the best I've felt since...almost a year ago. I'm thrilled of course but also wondering whether I'll go through such a terrible relapse every winter. I hope this one was unusual.
So this week, I haven't had much blogging time because I've spent almost no time lying on the couch! I've been running errands, making long overdue phone calls, and even made trips to both Trader Joe's and the regular grocery store! Yesterday, for the first time since September, I accompanied my two friends on what used to be a weekly hike at the local nature center. We were out there for an hour! My wonderful friends kept an eye on me and made sure we stayed on flat trails, reminded me to take breaks, and went at my slow pace. Last night, the three of us went out to dinner then to our book group...and after all that yesterday, I still felt good today!
This breakthrough came just in time - I was feeling completely overwhelmed. By last Friday, both Ken and I felt like we were at the breaking point - totally exhausted, drowning in to-dos, and making no progress. Eight months of being badly crashed most of the time really took their toll. I set goals at the start of the year, like I do every year, but felt like I had done nothing at all. My to-do list has overflowed onto a second pad of paper, and more things get added faster than I cross things off. I spend all my time on necessary "maintenance" stuff - laundry, meals, school & soccer, managing health insurance (a full-time job on its own), paying bills, etc. - and never get to my actual goals.
I was actually feeling this way back in January and felt like something had to change. I made a very tough decision to take a leave of absence from my beloved book blog, Book By Book. I love books and enjoy writing reviews, but with severely limited energy, that was unpaid writing that was taking up precious time (I decided to keep up the kids' book blog, since it relates directly to paid writing work I do). It was a hard thing for me to give up, but it ended up not making much difference. I was still drowning and unable to catch up. It took me over a month to get through the 200 e-mails that arrived while I was on spring break - I just accomplished that last Friday!
So, while I'm thrilled to be feeling better and making some small headway, Ken and I are both still feeling pretty overwhelmed. And now it's almost time to leave on another trip (when school gets out, we head to Oklahoma to visit Ken's parents and enjoy our annual summer road trip)....if I can find time to plan the trip!
I just hate this feeling of always being behind and never catching up. The truth is that I felt somewhat this way even before I got sick - I've always been prone to overcommitting to more than I can actually accomplish - but the limitations of CFS make it so much worse.
How do others handle this? I feel like I've already given up so much. I've tried hard to lower my expectations for myself, but I obviously still have so far to go. For now, I'll just keep plugging away and be grateful for this brief run of good health.
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.
Sue ~
ReplyDeleteWhat good news that you are getting the unexpected gift of stamina! I love when that happens! When it passes, you can recall the good times to mind to get you through until the next gift of energy comes along!
Judy
Maybe it's just me, but your post felt like it was running! LOL!
ReplyDeleteWow! You get a lot done.
I think you question is one that I struggle with two. I have had to severely cut back in order to 'keep up.' I find, too, if too much comes at me, I am drowning faster than I can say 'split pea.'
I often wonder how you all do it with husbands, children, work, activities. It's not like you can just let go and say, Okay, I'm shutting down now. That has to be really hard.
I know this may not mean much but I think you are an amazing mom and wife. You're family is lucky to have you.
Oklahoma, you say, huh?! Well, make sure you wave when you drive by my apartment! ha ha!
Hey - so glad you're having a good stretch. I know what you mean about balancing it all - I continually feel like I'm about to fall over the edge... Honestly, though, as much as I have occasional panic attacks about how I'm handling (or not) it all, I do know I'm happier when I'm just a bit too busy, rather than not enough. I don't know what that says about my psychopathology, but it seems to work!
ReplyDeleteSometimes it's not until we feel a bit better we realise how bad we were. I'm in a similar place right now and, like you, still feeling I'm not gaining ground despite the extra energy. And I don't have children to look after. I try to explain to my partner that domestic work takes up a huge proportion of my time and energy, much more than it does for him, even though he's working. It's a full time job just to stay afloat let alone have a life! I'd like a home help. If I had the cash that is what I would do, have someone to cook, clean, shop, wash, or at least to work alongside. In the absence of astonishing wealth I have to make do with delegation and the occasional sit-down strike! Sometimes I have to prioritise, say, my art, and let the washing rot for another day. But when both of you are at the end of your tether it is very hard to do.
ReplyDeleteIf you find the answer, please will you let me know? In the meantime, I'm so glad for you that your health is picking up. Fingers crossed it lasts. . .
You're right, Dominique - with a family, I can't just drop out of life when I crash (though if the crash is bad enough, I sometimes do for a day or two). I've often wondered whether I might have a shot at healing if I could just focus on taking care of myself for a month or two. But, of course, I wouldn't trade my family for anything - they also bring me so much joy.
ReplyDeleteSue
Peryl -
ReplyDeleteAlthough I'm naturally a go-go-go type of person (pre-CFS), I honestly can't remember what's it's like to not have enough to do!! I guess maybe I had some free time before we had kids (though my job was more demanding back then and I traveled a lot for work), but that is a distant memory!
Jo - yes, imagine how much we could accomplish if we didn't have to take care of all that household stuff!
Sue
I'm with you, I hate feeling overwhelmed & never being able to catch up, BUT it's good that you are feeling well enough to do enough stuff to feel that way!
ReplyDeleteI don't know how to keep up -- many of my posts express this same thing. I'm frequently behind on something (usually dishes & laundry at my house). The only thing I can say ... which will be no news to you ... is to do what you can and remember to take care of yourself!
I'm so glad you've had a string of good days, Sue. Enjoy them. Oddly enough, one of the things I like about being sick is that my "to do" list is shorter. Of course, I don't have young kids at home. I've said before that I'm in awe of how you handle CFS and raising a family.
ReplyDeleteYou might try just accepting that you'll never be caught up (when I took that position with my law school studies many years ago, I felt like a weight was lifted). And then prioritize that list and just start at the top (knowing of course that you'll be interrupted by some unexpected family happening).
Ah, life!
I do not have much to add but wanted to tell you the title of this post gave me a good laugh!!! One that I needed.:)
ReplyDelete