Sorry things have been so quiet here at my blog. That is in direct contrast to the way things have been in my REAL life lately! As many of you already know, I have been frantically busy with end-of-school stuff, soccer, school play, graduation preparation, and visitors, in addition to all the usual stuff in a family dealing with chronic illnesses.
I have been really pushing myself past my limits lately, pretty much every day. I rarely get even an hour of quiet time to myself (Jamie is working with his tutor right now, and Craig is still at school), and I haven't been getting enough sleep, either. You all know what happens when someone with CFS just keeps pushing, despite the warning signs to slow down.
I felt awful yesterday, but my husband was coming home from a business trip, my mom was already here, her husband due to arrive today, and my brother-in-law, niece, and nephew tomorrow. So, I pushed myself (again) and went to the grocery store. Yes, I know I shouldn't have, but I did. And then I made dinner, too. Of course, I felt even worse later. I know I was cranky and out of sorts with my family - I was just so far past the point of exhaustion.
So, despite desperately needing sleep, I slept restlessly last night (one of the divine ironies of CFS). I finally woke fully at about 5 am and couldn't get back to sleep because my mind was reeling, not only with things I needed to do but also with all sorts of obsessive rants - you know how that happens when you're spiraling downward? I moved to the basement - wonderfully dark and quiet and freezing cold (I am always waking up during the night feeling overheated). I got a few more hours sleep there and let me husband get my son out the door this morning.
Of course, I am pretty badly crashed today. I finally got the message and have been trying to rest. We still have waves of visitors coming in. Craig has the lead in his middle school musical, The Pirates of Penzance, so the family are coming in to town for this weekend's performances.
I am planning to order Chinese take-out for dinner tonight, and we're having simple make-your-own soft tacos tomorrow night. I am teachable; it just sometimes takes me a while :)
I have vowed not to overdo again, but I probably will with graduation in 2 weeks and vacation another week after that (which I have not even begun to plan yet!). I just wanted to check in here briefly and say hello. Hope everyone has a good weekend!
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.
8 comments:
I have Addison's Disease, which also has a CFS aspect to it. The downward spiral can certainly be so discouraging when trying to keep up with family and activities. Hope you have a good weekend, and manage to rest your body and mind. Easier said than done sometimes, isn't it?
Sounds like you are over-the-top busy. I hope you are able to grab some rest hear and there and make it through without too bad a crash. Maybe even if it's mini power rests. Hang in there.
Hi Sue,
Thank you for sharing your story. CFS is a very strong teacher to say the least. Living with limits is not easy. Hope you can rest and enjoy the family.
Hope you can find some Sue time soon! Perhaps you could ask you're visiting family to help with meals and shopping etc. I think that having this illness allows us to opt out of being the 'hostess with the mostest'! The fact that you're already aware of all the busy times ahead is also a sign of a dangerous overdrive state. Allow yourself to focus on one thing at a time and how you can do things in the most effortless way possible! Even if that means asking for help. If you burn out big time you'll be even less effective as a carer! I'm sure you know all this but sometimes we need reminding!
Yikes! So much going on....hang in there Sue...rest and rest some more. Lifting you up in prayer today!
Thanks Sue for your post- I just celebrated my 40th birthday on the 16th and despite having the party at our home - where my boyfriend did all the work, and the next day friends over for a casual lunch...the "being on" has hit me hard too - I also kept telling myself - you are feeling so good - slow down....its so difficult and its so hard for others to understand - I thought of you today as I did my own "movie saturday" - watched New Year's Eve and now on The Vow - wishing your son all the best in his performance - again its comforting to not feel so alone when you start falling down towards the crash - be well.
"Courage" as the French would say.
It's hard, when there's so much going on (especially if it is good stuff, and you want to be involved) Hope you are doing As Well As Possible!
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