Thursday, March 01, 2012

A Very Brief Respite

I know I haven't been writing here much lately.  I actually haven't been writing much of anything - my CFS blog, my book blogs, certainly nothing that might actually earn me some money. 

I have been struggling lately, both physically and emotionally, and feeling completely overwhelmed.  In addition to the usual stuff (virally-triggered winter crashes, Jamie's condition), the past few weeks have brought additional stresses.  Craig, who is rarely sick, spent almost two weeks home from school, though he went back today and is now feeling like his old self again.  The stress level has risen considerably, thanks to ongoing battles with Jamie's high school over providing him with the support he needs.  As sick as he's been, the standard accommodations that have helped him through the past 5 years just aren't enough this year.  We are still trying to resolve those problems, so I'll provide some details later - hopefully, details that can help other families.

So, by last week, I felt like I had reached my limit, like I was just going to explode if I didn't somehow get some down time by myself.  I called some good friends (who also have a son with CFS) and asked if I could use their rental beach condo (obviously it's the off season!) for a brief respite.  They are so wonderful (and of course, totally understood how I was feeling), they actually brought the key to me that night.  The next morning, with both of my kids still lying in the family room and the TV and video games still blaring, I just packed up and took off (lest you think I am a bad mother, my "kids" are teens).  I'm not usually so spontaneous (I'm a planner and list-maker!), but my husband supported me and I desperately needed to get away.

Oddly, it took me a while to actually relax.  I enjoyed the 90-minute drive, listening to an audio book and trying my best to leave my problems behind.  When I arrived, I walked around the empty condo, wondering what to do with myself.  I chose my bed, fiddled with the TV a bit, unpacked my meager provisions, and texted compulsively with everyone back home.  I had some lunch (left-overs I brought with me) and gratefully crawled under a fluffy comforter for my nap.

That did the trick, and I finally began to relax.  I read my book, and watched hours and hours of The Pillars of the Earth miniseries which I'd picked up at the library on my way out of town.  I went out and sought yummy take-out for dinner, spent less than 2 minutes doing dishes (wash 1 plate, wash 1 fork), and spent lots of time lying on the couch.  I attempted a short walk on the beach the next morning (the wind was monsoon-like!) and stayed at the condo until after my nap, then drove back home listening to my audio book.

Of course, everything was still waiting for me when I got home: a messy house, sick kids (though one was temporarily feeling better), and nonstop, overflowing to-do lists.  But I felt better, calmer, well rested, and more able to cope. I think I was in such bad shape last week that I may have even scared my wonderful husband a bit; he knew Friday morning he was going to need to go to Urgent Care for a bad infection, but he didn't tell me about it until I called that night from the beach!  I'm lucky to have such a supportive family.

So, my little 24-hour getaway wasn't much, but it definitely helped.  It was fabulous - and strange - to have no one to take care of but myself.  I know I need to do a better job on a daily basis of taking care of myself, but it's hard to do in the midst of so much stress and constant urgencies.  Here I am again, another week that's being spent frantically trying to make calls and e-mails to get my son the support he needs at school, managing one or more sick kids at home every day, and trying to still take care of my family.  But perhaps I am slowly learning this lesson; I spent a half hour out on the deck, in the (cold) sunshine, reading my book this afternoon.  Every little bit helps, right?

How do you make sure to take care of yourself in the midst of chaos?  I'm open to suggestions!


Renee said...

It has been a long time since I had to care for kids at home while sick, and especially in your case having such sick kids too! Difficult to say the least, Sue. It is no wonder you feel overwhelmed at times. In the midst of chaos it is difficult for me to come down from the adrenaline surges to relax, but that is what I need. I find reading a way to escape...a good movie...quiet music......hiding out in my room.....When we had so many kids at home, I sometimes would go out into our tent camper in the summer or fall and spend time alone...with a DO NOT disturb warning to the kids. Just quiet and a good book. I do have a CD with a calming exercise for anxiety which helps me relax. I have listened to it so often it triggers my muscles to relax.
Wishing you well, Sue, wishing you peace, calm, joy, and good health for all of you.

Sue Jackson said...

Thank you, as always Renee, for your compassion and understanding.

I LOVE the idea about using the camper as a hide-out! We have a pop-up also, and though it is currently in the garage for winter storage, I may just use it to escape (to the driveway) this summer!

Would you mind telling me the name of your relaxation CD? A good friend was recently diagnosed with MS and is struggling with severe anxiety - this sounds like it might be helpful to her.


Toni said...

I just want to echo Renee's kind words: I can't imagine how hard it would be to be as sick as I am and have a family to care for with the stresses you've been facing. I'm so glad you have Ken. He's such a gem. I like Renee's idea of going out to your camper. You have one I know from your trips.

I hope things ease for you soon. It will pass, it will a good mantra for me sometimes. Love to you, Toni

Sarah Dawneé said...

Oh my!

I'm so sorry that you are still going through so much with Jamie's school and other stress.

I'm very glad that you were able to take a little mini-vacation to relax a bit. =)

I hope and pray that things improve soon. And, I hope that Jamie starts feeling better too.

I don't have all of the responsibilities that you do. But, I must say that the things that helps me relax are sitting out and soaking up a bit of sunshine, reading, praying, and sometimes I rest on my back on the floor or in bed and close my eyes and let music "sink into me". Classical guitar is one of the styles that I find very relaxing. (Such as David Brandon or Christopher Parkening.)

And, even in the midst of chaos I've learned that I have to take time to be creative. Whether that is taking time to doodle or photographing a bird it is important for me to do something small daily.

Baffled said...

I think you did exactly the right thing. Getting away by yourself is perfect. For mini getaways without leaving the house, I suggest bubble baths and a hammock in the backyard. It usually takes a while for my family to find me in the hammock. For some reason they don't look for me there.

hkd said...

hi sue -
i love this relaxation cd - its unique in that it has a dual message and is listened to on headphones - one story is being read in your left ear and a different one in the right - it confuses the brain to focus on only one - and creates a very relaxed state - i met the woman who produced it - she's fabulous - (its the first one on the left in the picture) and i asked you can download it from the cd and it still works properly

wishing you a better week! a friend once gave me the advice - "extreme self care" and its always a useful motto

here is the link

Anonymous said...

Your getaway was just what you needed and how wonderful that your family is so supportive. We have a camper parked at a campground year round that's about 45 min from home. We go there for weekends and sometimes a week. But more often I take the dogs (they force me to walk 5-10 min 3-4 times a day cause there's no fenced yard at the trailer!) and my laptop and some food and head out for a few days mid-week by myself. It's so nice to do what I want when I want and follow my own schedule for sleeping, eating, being outside. I find being outside is the best thing for an attitude adjustment :-) I sit outside and watch tv or get on the laptop and write for fun. I read a lot outdoors (even at home out on the deck). It's important to have a place that you can use for alone time. I've known people who went to a motel down the street for a 24 hour getaway - one with a hot tub in the room!! Whatever it takes -- do what you need to do to take care of yourself.

Sue Jackson said...

The hammock sounds lovely! I will try to remember that when the weather warms up. It always takes my family a while to find me out on the deck, too.

Sue Jackson said...

Wow, sounds very intriguing and unique. I will pass this along to my friend - thanks!

Anonymous said...

You continue to be a shining inspiration to me Sue! And who knew you could be so spontaneous! It was so smart, and loving to yourself to make that getaway.

I truly wish I had the resources to do the same at times. Heck, I'd settle for just one CFS friend where I live. Dunno why there aren't connections to other pwc's here that I can find. Maybe I should try again. My pc time is so limited also because I share it with my daugthers. Can't afford to get a laptop yet.

Lately, I have found solice in reaching-out to struggling women at WFS (Women For Sobriety) online. If I am able to use my long-time experiences in recovery from alcoholism to help others, it is very relaxing in its own way. I seem to have a knack for it (I'm told).

You are such a selfless person, Sue. It's so important to use our suffering to help others, as you do so well for the CFS community and beyond. It's really important to take care of yourself first though, or you have nothing to give to others. So, again, kudos, and take more respites!


Sue Jackson said...

Thanks for all the kind words and support, Judy! I heartily agree with what you said about helping others - it somehow makes our own years of suffering seem more meaningful and valuable if we can use them to help others. But you are right - we are no good to anyone if we don't take care of ourselves first!

Annie said...

Very honest post Sue. So glad you let yourself get away. Do hope you manage it again soon. As Tara managed 'you can't give what you don't have' It's only by truly understanding the meaning of this that caring mothers will permit themselves a break. It would be better if the house fairies whipped in and cleaned everything up while we gone I guess but the break sure means a lot! Well done and I'm glad you enjoyed it.

kellieanneb said...

I had mentioned to my hubby, that you had been a little quiet online of late, and hope you were taking the time to care for yourself. Glad to know my hopes were spot on. Sometimes it pays to leave it all behind even if only for a hour, afternoon or 24 hours. Good one you for putting yourself first when you most needed it. Kellie