Having a rough day today. I'm getting my period which always makes all my CFS symptoms worse (that's why I take a 90-day birth control pill). Craig was home sick again, too, but he perked up a little this afternoon, so I'm hoping he's on the mend.
I was feeling so bad this afternoon that I went back to bed after I picked Jamie up. At one point, I had to even put my book down and just lie there with my eyes closed. I was trying to figure out how on earth I'd find the energy to get up and make dinner.
It's so hard to describe that feeling, when CFS is that bad. Fatigue (the f-word) is such a horribly inadequate word. It doesn't even come close. I feel like I'm stuck in wet cement, like I can barely move. And it's not just physical; it's mental, too. A complete lack of both physical and mental energy. A complete lack of motivation. I don't even care about all the things I meant to do today, all the things that need to be done, all the things I normally want to do. I don't care about anything except resting. I just want to curl up in a ball and never leave my warm bed.
I really hate feeling this way, and I'm starting to feel a creeping sense of despair, too (probably in part due to the hormonal fluctuations). Understanding it intellectually doesn't matter, either. Writing about it helps a little, though. Thanks for listening.
(And, obviously, I DID eventually get up, Ken came home and helped get dinner ready, and I just found out that the season premier of Lost is on tonight! It really helps to have something to look forward to, doesn't it?)
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.
16 comments:
Sue, you have made our kind of exhaustion and fatigue more understandable when you talk of wet cement. It does seem that way doesn't it...heavy heavy limbs, pure exhaustion but often for me inability to sleep...I sometimes get scared that when I lay down with that gravity pull keeping me pinned to the bed or sofa, that I will never get up again...but we do. I really do understand what you are saying, and I have heard that hormonal changes make CFS worse...so rest, rest rest. Enjoy watching Lost tonight.
You are in my thoughts and prayers. Thank you for sharing....
I like your characterization of fatigue as the f-word! I'm feeling that way towards this disease right now, too.
I do like your characterization of walking through wet cement. I've often pictured myself trying to run through sand, and then I've thought about the strength I'm building up, even though anything that looks like progress is slow and unbearable.
Maybe it's a good thing that we shut down, physically and mentally. Kind of like a defense mechanism against going too far. Give in, hang in there, things will be better tomorrow.
Wet cement. That about says it. I'm glad that writing about it helps your because reading what you write sure helps me. As Renee said, thank you for sharing.
I hope your evening is as enjoyable as possible.
Shelli -
That's how Ken explains crashes to people who don't understand CFS. Based on what we've learned from reading stuff by Dr. Bell, Dr. Cheney, and other experts...that your body isn't getting enough blood circulation to the brain and heart and a crash is the body's way of protecting you, by making it almost impossible for you to exert and increase the damage, by forcing you to rest and allow your body time to recuperate.
Wow the comparison to wet cement brought it home for me. Even though I've seen it with Jessie, I still can't totally relate. That actually gave it a physical sense.
If writing is what helps you, then write away. We'll be here to read and talk. :)
Okay...that is really, really, weird. We both write on the F-word and we both have a horrible day? Are you eating the same thing that I am eating? LOL
I love Renee's description that sometimes your afraid if you lay down the gravity will pin you there. Wow. I totally get that.
I have no cable so basically I watch rental, read, or write. I do a lot of the writing lately.
How nice of your husband to help with dinner. That is so nice! Give him a high-five for me!
Well, I guess we are now twins - linked in the mind and body! he he
Hope tomorrow is a better day!
BTW, I created a trackback link on my blog to your article since we both wrote on the same subject...the dreaded F-word. :-)
Sorry about that kind of a day - boy do I know it well. (Also sorry about Lost - it's not new, but I guess you know that already).
Hope tomorrow finds you even just a little bit better.
Yep...I know the wet cement feeling too. Have been living with CFS since 1992. Sorry you and your family have this ....but am glad I found your blog where someones understands!! Peggy in SW Missouri
Oh yes, I know that feeling so well. You stop, and you can't start again.
I really appreciate that you found the energy to drop by my blog and support me when you are feeling so crashed yourself.
Keep buggering on, as Winston Churchill used to say.
Wow, I got up this morning and was overwhelmed by the kindness, support, and friendship you've all given me! Yes, we discovered that Lost was a rerun (sigh), but we had a tape (yes, an actual tape) of last week's Private Practice, so we watched that instead. When you can't stay up past 10 pm, you always have some taped shows on hand! I'm doing a little better today, Craig is still home sick, and I'm planning to rest a lot, in the hopes that I can make it to my book group tonight.
Peggy -
Welcome to my blog!! As you can see, there's a warm, supportive network of people here and at other CFS blogs. Hope we'll see you again!
Sue
Sue, I'm sorry you've been feeling that "stuck in wet cement" absolutely flattened by CFS feeling!
I just love your attitude. Your humor's always there no matter how lousy you might feel.
Yes, tv shows to look forward too! So many days it lifts my spirts thinking "Grey's Anatomy tonight!" Have you discovered the new show "The forgotten" with Christian Slater? Darn, this memory of mine. I cannot remember what night it is on, but...when I do remember I look forward to that one all day. Oh the intellectual growth that accompanies this illness (ha).
Me too on the period exacerbating CFS symptoms. The week before my period is always my sickest. My neurological symptoms flare terribly as estrogen is a nerve irritant.
Glad you were able to get up and watch "Lost". Take gentle care Sue...sending thoughts your way, Kerry
Yes, definatly 'wet cement'! I generally say it's like walking in quick sand. Hopefully, watching Lost will let you forget about things for an hour- but don't talk about it without putting up spoilers first!
Kerry -
I had to laugh because all day today I've been thinking, "Grey's Anatomy is on tonight!" ha ha...looks like we're of the same mind!
Yup, another terrible day - the worst yet this week. This time, I know I earned it, though - went to my book group last night - and I'm glad I did!
Tomorrow is another day (and Grey's Anatomy is on tonight!)
Sue
What a great description-wet cement! I'm feeling that way today so I completely get it.
I'm glad that writing helps. I also get the part where you said that even though intellectually you understand what is going on, emotionally its tough to tolerate..
Hi Sue, I feel your pain. Each of my family members are incredibly emotionally fatigued with living with this disease. This "mini" move to AZ (still have 3/4 of our house to move down here and another place to find to live in before it sells) has been way too much us all "capacity" wise - with all that a move entails (my husband had a job change, too). Yes, tv shows to look forward too, music, movies, books, on-line friends do help us all to rest in order to keep on keeping on. Thank you for blogging.
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