I wasn't planning to write a blog post today but just felt like talking to someone who gets it...
sigh...it turns out I did have to pay for my victorious return to the grocery store yesterday. I felt fine all day yesterday and OK when I woke up this morning, but then got steadily worse as the day went on. After I got Craig off to school, I made a list of things I wanted to do today...then an hour later crawled into bed, aching all over, and just gave up. I hate days like this.
I've been looking forward to my book group tonight (it's a major part of my meager social life!), but I just decided to stay home. I know it was the right decision because I don't feel disappointed, just relieved. The idea of getting dressed and going out was exhausting, even if it's just to my neighbor's house down the street. I might be able to do it, but I don't want to endure yet another payback day tomorrow. Ken leaves tomorrow for a short business trip, and I'll need my energy to handle things on my own, plus our cleaning service comes tomorrow morning, so I know I won't be able to rest completely.
Just lying here on the couch with my laptop, I know I made the right decision. I feel very achy and mentally wiped out. Hopefully, missing out on my book group tonight will help me to bounce back tomorrow. At least, I can socialize online...
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.
12 comments:
From my sofa to yours....wishing you better days ahead, Sue. Sorry you are achy and tired today again...How does the Lyme fight go? Do you notice changes with that?
Sorry you have to miss your book club.
Today I went to Joanne's Cottage Garden blog and saw her flowers starting to pop out....spring there already...Looking at our piles of snow of which I know you have plenty~ I am anxious for warmer days.
Gentle hugs....hang in there.
One of the hardest things for me to give up was my book club! It was the right thing to do, though. For me, having the decision hovering over me, trying to figure out if I'm up to it or not, is as stressful as actually going.
Take good care of yourself, and good luck bouncing back tomorrow.
Yes, Renee, still snow here, despite rain and close to 40 today. Friends have been posting on Facebook about crocuses and daffodils coming up - maybe ours are coming up but we wouldn't know because the garden still has a foot of snow over it!
Lyme is still there - not much change. The Plaquonil caused some minor herx when I started it in January. At this point, most if not all of my symptoms are CFS-related. I think the doc will go up on the Plaquonil when I see him next week, so I may be looking at another herx.
Sue
I agree with Renee, saying from my couch to yours, I hope things get better. It's incredibly hard to deal with giving up such important social functions, but you have to take care of yourself :)
I'm sorry about your book club tonight, Sue. It's hard to always having to be weighing the pros and cons of engaging in various activities. Those calculations alone can be exhausting! Yes, you'd enjoy the club tonight but I think you're right that it won't be worth the payback, especially with Ken going out of town.
One of my frustrations is that most social opportunities take place at night. I'm never able to go out at night. Just too sick. So, book groups and the like are just not possibilities for me. I'm glad that you can usually go and hope you can next time.
I've had an awful couple of week...fibro pains have been so bad that I've been on morphine & vicodin...and many many plans have had to be cancelled, but I guess that's just the way it goes...on the bright side, being so sick makes the good days seem extra special :) Hope you have one of those special days soon.
Yeah, we get it. I gave up and went to bed yesterday as well. The second time I've done that recently. It feels like such a waste of precious time. If I don't improve a bit today I may have to ditch Art Club tomorrow. Like you, it's the only bit of F2F socialising I get.
As I write this it will be about 4am for you, so I hope the energy conservation went ok and you feel better on waking. Hugs across the sea.
Oh, the feeling of relief instead of disappointment. I know that all too well! And have even felt guilty about it. I like how you use it as a gauge to know it was the right decision. You know we're all pulling for you since we're in this too!
Rest up and take care
Hi Sue - I just came across your blog through Generation X Mom - I saw your comment, and I'm very pleased to have discovered you. I have fibromyalgia - not the same thing, of course, but with some of the same symptoms and limitations. I'm working on an article right now about parenting with fibromyalgia, and am interested in following your journey.
Peryl
Hi, Peryl -
Welcome! I'm glad you found your way here. You're right - there are lots of similarities between FM and CFS,and lots of the readers of this blog have FM. Lots of us are moms like you, too!
I checked out your blog - you have a great writing style and a fun sense of humor! Thanks for stopping by and taking the time to comment.
Sue
Sitting on our sofas with our laptops... From mine I send a hug. Grocery shopping, especially by oneself is exhausting, crashing exhausting. I grocery shop with a loved one and medicine to hold my blood pressure up ...and still it is exhausting.
I'm sorry you couldn't make your book club, yet glad you took good care of yourself.
Hope in these days since you wrote this post, you are feeling stronger Sue.
That was one of the hardest parts of this illness for me to deal with. The constant uncertainty of whether I should do something or shouldn't do something.
I'm sorry you had to miss your book club but am glad you are getting rest, especially knowing you are 'single-parenting' while you hubby is gone.
Take it easy. You are in my thoughts.
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