My niece was married on Friday. I loaded all my kids into the van, and we made the 1 1/2 hour ride down to my mom's house for the reception. I thought it would help if I let my oldest daughter drive... it didn't! I visited with my sister whom I haven't seen in two and a half years. We laughed and had a wonderful time. After the reception, it was early enough that we could all go swimming. We ended up hours in the jacuzzi, and I just couldn't bear to tear myself away from the fun. Finally, it was late. My daughter was staying the night, so I ended up driving home myself, in the dark.
I thought I was taking it easy on Saturday -- just a little trip out to the grocery store for much needed food. The evening came, and I had to make a decision: do I go to see fireworks with my husband and kids, or do I get an early night and make it to church the next day? I chose to stay home.
Yesterday, I woke up, and there was just no way I could make it to church. I was aching all over, I was weak, I was emotional. Everything cried, "No way!" My husband took one look at me and suggested I stay home. "But I stayed home from fireworks so I could go!" I said. He told me, "Honey, it doesn't really work that way."
Oh, my wise man. I've learned that everything has its price when you have chronic fatigue. I thought I had the "system" down. I thought I could have my own "cap and trade" program and get away with it. I discovered two great flaws with that. First, I don't know the true cost of an activity until the aftermath actually hits me. Second, I follow my heart and jump into activities that end up really, really expensive.
Is it possible to really listen to your body? I'm still riding the roller coaster, and that can't help my recovery. I'm doing a lot of great things that I think can really make a difference to my health. But I'm always guessing at my limitations, and I am not getting it right. I sabotage myself, I think.
I know why. I hate the thought of life passing by without being able to live it. I know some things only happen once, and then they are gone. I don't want to regret this giant part of my life, especially if it drags on and on and on. I want to steal a slice of normalcy, even though this disease has decided it isn't supposed to be mine.
2 days ago
9 comments:
Shelli~
You are so right -- we really never know the cost of an activity; however I personally think life is worth it if we sometimes follow our heart and suffer the crash ... especially for special events like weddings :)
Sounds like you have a very wise, supportive husband -- they certainly make like a little easier, don't they?
Glad you had fun & hope you recover quickly!
"Is it possible to really listen to your body?" A very good question. I'm exactly the same. I think I've got the hang of it and then I'll crash for no reason. Well, there always is a reason, I just haven't spotted it.
We have to learn the language of our bodies and I suppose, since we are in this mess, we weren't very good at that to start with.
Sounds like you had a load of fun though :-)
"...since we are in this mess, we weren't very good at that to start with." -- Ah, very profound! Thanks for putting this in perspective. This changes things for me. Instead of getting frustrated with myself for "failing" again, I can celebrate how far I've come in learning to listen. I like that!
I am not so sure my body tells me the "truth" about what is is feeling...I think it also believes it can do more than is possible and maybe the crashes even surprise my body?? Hmmmmm
Glad you had a good time with family, sorry it brought on a crash. I really like your idea of NOT looking at it as failing again..been there and done that more times than I can count. Seeing it as a baby step in moving forward..is a good place to be.
Hope by now you are feeling somewhat better
R
One thing I have learnt is not to be so hard on myself for being bold sometimes. The life energy inside us never leaves us if it was there in the first place. Doing what the body wants every time can be psychologically harmful and if we are depressed from not doing something this I would imagine effects our bodies too. So I try to listen to my body most of the time, but some times that energy for life takes control and I can't ignore it. Yes, I may crash but I always feel happy for what I got to do. That happiness has to be a good tonic for the health too.
Try not to be so hard on yourself. It sounds like you had a great day!! : )
The worst thing you can do is beat yourself up for taking longer to recover from an activity than you 'want to'. I think that it is okay to overdo it a little bit on special occasions, but you then have to rest as much as you need to the following day(s) without feeling guilty. I don't believe there is ever going to be a perfect way to cope with CFS/ME, we just have to do our best and not blame ourselves for the amount of rest we need. Your husband is right, it just doesn't work that way :D I've really struggled with cultivating the patience to deal with my recovery periods, and I know how frustrating it can be when you have lots of things you want to do. I might complain about it, but in the end I just think, well, if I have to spend today in bed, I have to spend today in bed! That's just life with CFS/ME and it's nobody's fault. You didn't give yourself this disease and trying to be perfect about it just causes more stress. I try to enjoy my recovery days by reading a good book and having some quality me-time instead of worrying about what I 'should' be doing instead. It's hard to let go of that voice in our head that demands action or guilt, but it is well worth getting rid of! *hugs* and best of luck to you :D
I didn't intend to inundate you with comments on every single post, but your posts are always so well-written and thought-provoking!
The balancing act is incredibly hard. I still don't have it right after 7 years. But don't be too hard on yourself over this particular incident. A full-day wedding plus the round-trip drive was a LOT.
More than that, though, your crash probably came mostly from the jacuzzi - the absolute worst thing something with CFS and OI can do!! Hot water/heat dilate the blood vessels, making it even harder than usual (because of low blood volume and low blood pressure) for blood to circulate properly to your heart and brain. Jamie went in a jacuzzi last year at a pool party and was so sick by the time we picked him up! His doctor warned him to stay away from now on. Yes, just another thing limited by CFS but knowing this can prevent future crashes. Next time, stay in the cool pool or hang out by the side of the jacuzzi!
Hope you're feeling better by now.
Sue
I am so glad I have this blog! I learn so much, and I soooo appreciate the wonderful support from my friends. Thank you, all!
Shelli.
Great to connect with you here.
Love the (energy) of your blog.
I too have a very loving husband and three children.
This illness has been extremely challenging at times, however I get up each day with a positive outlook that today will be great and there was your comment on my blog.
As you know this illness has it's own way of isolating it's host.
My hope is that we all, are on our way to a healthy life, rich in all of God's Love.
In Love Rose
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