Sunday, March 21, 2010

Quote It Sunday 3/21

Happy First Day of Spring! It's finally here - we survived the long, hard winter!

I'm pretty beat today, but it was expected and worth it. I drove the boys and I yesterday to my cousin's house (90 minutes away) to visit his family and his sister (my other cousin) and her family who were visiting from North Carolina. We hadn't seen the NC group in four years, so it was great to see everyone, and the boys had a blast playing with all their cousins and getting reacquainted.

So, I'm a day late on the weekly quote, and I actually planned one that was a bit more positive, but this is how I felt this morning:

I used to look forward to every day. Now I wake up totally exhausted and think, "Oh, shit, I'm awake."

- CFS patient quote from the book Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide by Katrina Berne, PhD
That is one of many patient quotes Katrina included in her chapter, Overwhelmed and Uncertain: The Effects of CFS and FM. I highly recommend this book. I bought it shortly after being diagnosed with CFS and have read it cover-to-cover several times and still refer to it often. It's a very thorough explanation of the physiology behind CFS, how it's diagnosed, what treatments are available for various symptoms, plus very in-depth coverage of the emotional aspects of living with CFS. When my mother was struggling to understand how CFS affected me, I copied that entire Overwhelmed and Uncertain chapter and sent it to her to read. This book was a real lifesaver for me at a time when I was desperate for information. It was published in 2001, so it's not completely up-to-date in terms of the latest research, but it was very thorough at the time and still provides an excellent overview for understanding CFS, especially for those who are newly diagnosed.



Toni said...

I agree about this book, Sue. I read it over and over when I first got sick. She addresses every aspect of CFS. In addition to offering a wealth of practical information, it was comforting to read it and feel understood.

Rest up!

Richard Lucas said...

The bit I don't like is that weird time I have between realising I'm awake, and being able to do anything about it. I feel like a diver on his way up from the ocean floor some days. Usually, it's a sense of duty telling to me to check that the hens have food and water that gets me going - which is a big part of the reason that I keep - they place obligations on me.

Sue Jackson said...

Toni -
That's it exactly - reading this book was the first time I realized there were other people out in the world who understood what I was going through!

Richard -
It's the same for me, except my obligation is to my kids!! I feel that way after my afternoon nap, too (as I just experienced an hour ago) - in that fuzzy region between sleep and wakefulness.


Dusty Bogwrangler said...

This made me LOL. I'm in my morning swim up from the ocean floor. (Loved that expression Richard!). I don't often buy recommended books, but I think I'm going to get this one. Thanks Sue.

Annie said...

I have had that quoted thought so many times.


Hope you feel better soon and good book recommendation!


Kerry said...

Perfect quote for this Monday morning. I do miss the days of...yeah, a new day...get my feet on the ground and get started. Now its, lets see what fits in my limits today...a little time on the computer? crocheting?

How nice it is to get a break from CFS in our dreams.

Sue, glad you were able to make the trip and have fun...hope you are able to recoup from the exertion asap.

Anonymous said...

I have had that trouble waking up soooo many times! My circadian rhythms have been more merciful lately, allowing me to get up in the morning and nap later in the day, which feels better than when I had get all my sleep in one long stretch, waking up hungry and dehydrated. I think Sue's V8 advice may have helped with that, since I drink a bit in the morning it seems to help me get going a bit faster. I often enjoy the feeling between wake and sleep in relation to naps, as it's one of the times that I don't feel sick, merely sleepy. But that morning, trying to wake up and unable to, yes, that is really harsh!

If I have very much salt in the evening, I'm often forced from bed early in the AM by pressure build up in my head, while some salt in the morning seems to work well for when I want to be upright (OI makes life complicated!). I usually get up in the middle of the night and have a drink and eat something with a low glycemic index, which also seems to make waking up less extremely difficult for me. It's still tough though, even with the best diet and habits, as everyone here probably already knows! I get the sense that people posting here are very conscientious about their lifestyles.

I like the diving metaphor, too!


dominique said...

I have read this book yet but have read her other book(s). I have added this to my reading list for April.

I'm glad you had a great weekend with your extended family!

I hope you recover from your visit quickly! :-)