Not something many CFS'ers would agree with :) Clearly, D.H. Lawrence didn't have a chronic illness. Since we have to live life different, the quote doesn't quite apply somehow -- This is something I found out all too well this weekend. I started the weekend in a deficit ... despite all my planning to make the weekend go smoothly it seems that something always goes awry.
We went to Southern California for my niece's 6th birthday --- thought if I was well enough planned that it wouldn't be a problem ... WRONG. Spent far too much time on Friday carrying out the plans ... preparing for being gone, completing last minute work, packing, etc. Then every day life threw in a wrench ... Adam woke up from his nap on Friday and had taken off his dirty diaper! So, before I left I wanted to be sure to wash the sheets and our clothes so nothing grew on them while we were gone. Worked non-stop almost all day and stayed up until after 10:00 pm to finish the laundry (which by the way is still in clean piles on the bedroom floor).
Had to get up at 6:00 am to get to the airport on time -- not nearly enough sleep for me to begin with and I knew I'd go the whole weekend without good sleep, which proved to be true. We got to Mike's aunt's house about 10:00 am ... ran some last minute errands to get bday presents and left for the party at 1:30.
I hate to let life pass me by, and going to the party was easy enough and well worth it; if I could just figure out the rest of the logistics! During the party, Mike was very concerned and reminded me many times to go and sit down while he watched Adam play with the other kids, slide down the slide, get his face painted by the clown and all the fun kid stuff. Of course, I didn't want to miss it so I'd find a chair close by and watch. Got back about 8:00, but since we were sharing the living room floor as sleeping space there was no 'bed' until everyone was ready to go to bed. And, being on the floor, after that didn't afford much sleep either.
Woke up super early Sunday morning (Mike's grandpa is an early riser, which woke Adam up, which woke up all of us on the floor). No nap either (tried to nap in the chair while watching a movie), then it was off to catch the plane and come back home.
Eating was a bit of a challenge - no breakfast Saturday morning, a small early lunch, a very small dinner (I asked Mike to stop and get something to eat on the way home, but we weren't able to since we weren't by ourselves) ... nothing to eat back at Aunt's. A bowl of cereal for breakfast Sunday so by lunch on Sunday I was STARVING -- then the takeout was messed up and my tacos were made with flour tortillas instead of corn but by that point I didn't care; I ate them and Adam's leftover quesadilla in spite of it. Hungry enough and I'll ignore all the rules :)
Got home Sunday at about 6:00 p.m. and crashed. Knew immediately that I'd gone too far (too little sleep, too little food, too little rest) despite my plans and intentions. The suitcases sit unpacked in the entry way and I've done little today but lie on the couch. Luckily for me, Adam is great at playing and entertaining himself. Sometimes I feel a little guilty for not being able to interact with him more, but I do what I can and he still seems to thrive. The knowledge that he doesn't know any different helps, but I still grieve slightly for the mom I always thought I'd be :)
I think the lesson learned is to not only be planned, but to be SAVED UP and to be more forceful in communication about what I need. Maybe this goes back to being more open about my illness and not being afraid of pity ... regardless I have the restrictions and people cannot help accommodate if they don't know. Sometimes all I need is a bit of help with preparations, sometimes it's different food or better sleeping quarters ... nevertheless, it goes against every thing I was taught growing up about being grateful and not asking for anything from a host, but taking what's given without comment ... aii yaii yaii surely it can be done without being rude. Thoughts?
We went to Southern California for my niece's 6th birthday --- thought if I was well enough planned that it wouldn't be a problem ... WRONG. Spent far too much time on Friday carrying out the plans ... preparing for being gone, completing last minute work, packing, etc. Then every day life threw in a wrench ... Adam woke up from his nap on Friday and had taken off his dirty diaper! So, before I left I wanted to be sure to wash the sheets and our clothes so nothing grew on them while we were gone. Worked non-stop almost all day and stayed up until after 10:00 pm to finish the laundry (which by the way is still in clean piles on the bedroom floor).
Had to get up at 6:00 am to get to the airport on time -- not nearly enough sleep for me to begin with and I knew I'd go the whole weekend without good sleep, which proved to be true. We got to Mike's aunt's house about 10:00 am ... ran some last minute errands to get bday presents and left for the party at 1:30.
I hate to let life pass me by, and going to the party was easy enough and well worth it; if I could just figure out the rest of the logistics! During the party, Mike was very concerned and reminded me many times to go and sit down while he watched Adam play with the other kids, slide down the slide, get his face painted by the clown and all the fun kid stuff. Of course, I didn't want to miss it so I'd find a chair close by and watch. Got back about 8:00, but since we were sharing the living room floor as sleeping space there was no 'bed' until everyone was ready to go to bed. And, being on the floor, after that didn't afford much sleep either.
Woke up super early Sunday morning (Mike's grandpa is an early riser, which woke Adam up, which woke up all of us on the floor). No nap either (tried to nap in the chair while watching a movie), then it was off to catch the plane and come back home.
Eating was a bit of a challenge - no breakfast Saturday morning, a small early lunch, a very small dinner (I asked Mike to stop and get something to eat on the way home, but we weren't able to since we weren't by ourselves) ... nothing to eat back at Aunt's. A bowl of cereal for breakfast Sunday so by lunch on Sunday I was STARVING -- then the takeout was messed up and my tacos were made with flour tortillas instead of corn but by that point I didn't care; I ate them and Adam's leftover quesadilla in spite of it. Hungry enough and I'll ignore all the rules :)
Got home Sunday at about 6:00 p.m. and crashed. Knew immediately that I'd gone too far (too little sleep, too little food, too little rest) despite my plans and intentions. The suitcases sit unpacked in the entry way and I've done little today but lie on the couch. Luckily for me, Adam is great at playing and entertaining himself. Sometimes I feel a little guilty for not being able to interact with him more, but I do what I can and he still seems to thrive. The knowledge that he doesn't know any different helps, but I still grieve slightly for the mom I always thought I'd be :)
I think the lesson learned is to not only be planned, but to be SAVED UP and to be more forceful in communication about what I need. Maybe this goes back to being more open about my illness and not being afraid of pity ... regardless I have the restrictions and people cannot help accommodate if they don't know. Sometimes all I need is a bit of help with preparations, sometimes it's different food or better sleeping quarters ... nevertheless, it goes against every thing I was taught growing up about being grateful and not asking for anything from a host, but taking what's given without comment ... aii yaii yaii surely it can be done without being rude. Thoughts?
8 comments:
My thoughts are that if you had cancer everyone would treat you like royalty. Poor you, what an ordeal. Yes, be more open about your illness. It helps to remove the stigma for everybody.
I don't know how you cope with young children. You sound like you are doing a great job of being a Mom. It's all about the relationship, not what you do with them.
I hope the crash is short-lived.
I agree with Jo, and with what you yourself recognize -- it's important to let people know how you are feeling and what they can do to help. People are so willing to help when they understand. Maybe if you let your needs know ahead of time, they can better prepare to accommodate you. Or if not, maybe you can budget in a cheap hotel room and rental car so you're more in control.
The mom thing is something I struggle with constantly! I know I'm not the mom I would have been; but I am there for my kids, and the lessons they are learning now are not ones I would have otherwise taught them. And, like my mom always said, love makes up for so many mistakes! Certainly I would have made mistakes anyway even without CFS. It's still a guilt trip and a struggle, though.
After reading this all I could think of was...GOOD GRIEF!!!!
I am with Shelli........a nice quiet Hotel room would be best for you but again did you know where you would be sleeping...did you know no food would be prepared for your family? It really sounds like so many things were unexpected and you did the best you could in the circumstances.
We can learn from the past and I am sure you will from this experience. I wish the best of resting for you and swift recovery from your crash.
I could relate to EVERYTHING you wrote about here! Getting ready for trips wears me out every time - I think it's the combination of physical exertion plus the stress of trying to get everything done in time.
And staying at a relative's house is exhausting to me, too. As for sleeping away from home, I'm like a little old lady now - away from my own bed and my usual routine, I need ear plugs, eye shades (or a dark sock for my eyes), and Ambien if I'm sleeping away from home...but all this works!
I can also relate to your struggles with your role as a mom with chronic illness. It's easier now that my boys are older, but my youngest was only 4 when I got CFS, and it was very difficult for awhile. Just try to remember that being a mom isn't about what you can do - your son loves you no matter what!
I hope you're recovering.
Sue
P.S. Guess what my "word verification" word was when I left this comment? "lymenit" Weird, huh?
Jozephine~
Thanks for the support! The crash was fairly short-lived!
Shelli~
You are so right about communicating my needs beforehand. I think inherently people want to help; they just don't understand!
Renee~
Good Grief indeed! :) I did know beforehand about the sleeping arrangements, but somehow thought it would be okay - ignorance on my part. I've certainly learned from this experience and I'm sure the future ones will be better for it. Thanks for the wishes for a swift recovery!
Sue~
I'm recovering, thanks so much. Your idea for taking earplugs, eye shades and sleeping pills is an excellent suggestion - I'm definitely doing this from now on!
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