Well, I'm finally feeling better again. That was a long, long week. I'm guessing that maybe some back-t0-school germs triggered my crash because it was far too severe and long-lasting to be caused by just getting up a little earlier or doing too much. I was still very sick all during our long weekend.
Despite my crash, we went to several social gatherings this weekend. I spent my days resting, then tried to tank up on salt, fluids, and supplements so I could manage to make it through our evenings with friends. Sunday night we went to a cook-out at the home of one of our boys' best friends. I felt my illness and otherness most acutely that evening.
In my younger days (pre-CFS and pre-kids), I was a party girl. I was pretty wild in high school and college, then I lived in New Orleans for several years which is, of course, party central. I have always been outgoing and extroverted. I love being with friends and meeting new people, laughing and talking and staying up late.
I think that's one of the cruelest things about CFIDS...that social interaction of any kind is so completely exhausting. Sunday evening - since I was already feeling bad to begin with - I really hit bottom. It was a fun party. We get along well with the boy's parents who were hosting the party, and I really enjoyed meeting all of their friends and neighbors. But I was very much aware of my illness and my different-ness all evening.
When we arrived, everyone was gathered in the kitchen, as they always do at parties. I knew I couldn't stay on my feet, so I sought out the only chairs nearby, in the dining room, but then I was out there by myself, with everyone else chatting while standing around in the kitchen. I got my glass of ice water (whoopee!) and went to the back deck to find Ken. It was just a few men out there, but at least I could sit and still be a part of the conversation. I settled myself onto the deck for the duration of the evening. No mingling for me, though eventually other people came outside and I did get to chat a bit.
I felt sicker and sicker as the evening wore on, but Ken and the boys were having fun, and I was enjoying the company. Dinner helped my energy a little, but then my stomach bloated and cramped - must have been some hidden dairy somewhere that I didn't notice. When we finally left at about 9:30, I had a headache so severe that I felt nauseous from the pain. I somehow managed to walk home and just collapsed into bed. I felt so bad and the headache was so awful that I couldn't fall asleep, until I finally took an Ambien. Monday, I woke with a severe sore throat, achy and exhausted, and had to spend the day resting. It seems so cruel and unfair a price to pay for just sitting around and talking to people.
I don't mean to complain. I'm grateful I was able to go at all (though, clearly, I should have stayed home!) It's just that the whole experience left me feeling so isolated and out of place, and I knew that all of you out there in the CFS blogging world would understand. It just seems so unfair that I can't even enjoy a glass of wine, yet I end up with a worse hang-over than I ever had in my old party days. It's as if I've lost a part of my identity.
Well, anyway, I'm grateful to be feeling OK again and am hoping for a much better week.
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.
14 comments:
Oh, Sue. How your post rang true for me, especially when you said it's as if we've lost some of our identity. My family was here for the weekend and I was more active than I have been in years. But I felt sick the whole time, even while they were saying how wonderful I looked. It's like there's the public me (even for my family) and the "real me." Reading your post was like reading a narrative of the last few days for me. The weekend was both wonderful and terrible at the same time. How do we survive with these split personalities! Thanks for taking the time to post; it's made me know, once again, that I'm not alone.
Hi Sue,
I'm sorry about the feeling of isolation, and missed parties. I do understand missing those things. Missing out on social interactions is definitely a hard part of CFS.
But I'm glad you're feeling better! I hope this week is a good week for you and the boys!
Laura
I can relate totally to what you are saying Sue. Like you I have countless stories that sound the same....It is so hard to be isolated or dealing with the symptoms and after effects of going somewhere and visiting. I am so sorry it did not go well.
Gentle hugs
I hate that otherness feeling, especially when people talk about work, vacation, etc. And even when someone knows about my illness, and says "you must be feeling pretty good because you look great" . . . it can really hurt.
Ah, yes...the "you look so good" paradox! Actually, on Sunday I was feeling so bad that the hostess (who knows about CFS) said when we walked in, "Sue, are you feeling all right? You look pretty tired." But no one else there knew me, so I was still incognito with respect to CFS, by default.
Thanks for all the comments - it really does help to know we are not alone!!
Sue
Hi Sue. Along with everyone else, I'm sorry for your crash as well as your feelings of sadness. When Jessie feels like that we just admit that it's a seriously sucky situation to be in and is totally NOT fair. This is a cruel disease, indeed. Even when you're thankful, you still need a few moments of out and out ranting, IMHO.
And about those "party girl" years. Don't feel bad, I'm healthy as a horse and can't hold up to that anymore. For what it's worth. :)
Glad to hear you're feeling better now. Hope the week just continues to get better and better for you. Sending (((hugs)))
(((hugs)))
Oh, this sounds so familiar to me too. Especially annoying coming after a period of wellness. It does rather seem like you've picked up a virus.
I'm sure your character still reflects the party girl. You are not diminished by your illness - not from where I'm sitting anyway.
I hope you feel better soon.
Thanks, Jo. That means a lot to me!
Sue
I know. I finally stopped going to my husband's family 'do's'. All I could do was sit in a room away from all of the noise, the loud music, the loud talking, etc. and then was worn out just from the hour's drive to their home. I used to enjoy people so much, too. It's hard.
Oh boy does this sound familiar (especially about the kitchen vs a place where you can be comfortable). I am sorry that you weren't able to do as much as you wanted to, and that you paid a price anyways.
I am glad, though, that you're feeling better.
Your account is so descriptive ... putting all the feelings into words. Thanks Sue!
Sue - I'm hoping for a better week for you, too! I know what you mean about losing your identity and you so aptly describe the price we pay .... if it's okay, can I link to your post?
I really empathize with this post. I'm sorry you had a crash! I'm 23, and this happens to me a lot-- you can probably imagine (or remember, depending on how long you've had CFS) trying to talk people into doing something low-key when you're the only one who is sick. I miss people when I'm home alone.
I can also relate to the "But you look okay..." issue! Even when you understand that the person is just trying to help, it almost feels (to me at least) like they're firmly placing the burden on my shoulders, or sometimes like they're actually wondering if I'm lying. The social exhaustions can be almost as bad as the physical kind sometimes. Good for you for still going to that party and finding a way to be around people!
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