Tuesday, July 27, 2010

Just bits and pieces...

Just bits and pieces today...

I keep forgetting to mention how much I enjoyed the Caroline Smailes's book 'Like Bees to Honey' and to thank her for her kindness. I was reading her book online, hosted chapter by chapter on other writer's blogs, and discovered chapter 4 was missing.

I contacted her to let her know and she very kindly gave me a synopsis of the chapter so I was able to continue reading without missing anything. Very sweet and generous of her to take her time and share like that.

The book was very interesting... I won't say more so I don't spoil it if you haven't read it yet. She has several other books that I look forward to reading.


So much I want to write about...so few cooperating braincells, lol. Some things I'm not sure how to say or whether to say either. I keep discarding and starting over. Partly situational and partly the impact of the CFS on my ability to concentrate and write.


Does everyone have a hierarchy of symptoms that indicate how badly they are overdoing it/have overdone it?

I definitely do and I'm way up at the top of my severity hierarchy these days. I'm not sure I've ever been this high up or stayed this high up before. I'm really concerned about what will happen if I am not able to stop overdoing it and bring it down. Living on adrenalin rushes to get things done and as reaction to stresses. Symptoms getting worse and worse. More trouble breathing, coughing steadily on the mildest exertion...on top of all the other 'normal' CFS symptoms that tell you you've overloaded.

I have decided I absolutely must glue my butt to this bed and rest. (Decision made Sunday...only now blogging about it.). I must do a better job of pacing and caring for myself. I must stop trying to be Superwoman (picture weak, extremely short of breath, fainty CFS Superwoman...the new superhero). If the house isn't on fire and no one is bleeding or collapsed on the floor, I've got to let things go and rest until I get a little stronger again.

This is much easier said than done lately. As I mentioned in an earlier post, my mother has come to live with me. Living by myself, I had learned to pace myself, to prioritize, and to let lots of things go and rest when I needed it. As a result, I have been able to care for myself independently for the last 7 years. I'm finding that very difficult to do with Mom here.

It's ironic...I'm forced to spend much of my time in bed and would benefit from some caregiver attention at times and yet I'm too frequently having to pull myself up and push myself to be 'the fixer', the problem-solver, and the doer of heavy, complex, or unpleasant tasks. Not complaining exactly...I'm just not sure what to do. Trying to problem solve but too tired to do much of that either.


Decided I'm going to dust off the wheelchair to give me a bit more freedom when I feel a little better after this crash. Sounds funny having to wait till you feel well enough to use a wheelchair, doesn't it? I'm just too weak to stay upright for very long right now. I can physically move my legs to walk but I'm so short of breath and get so extremely fatigued moving about these days that maybe the wheelchair will give me a little more freedom to get out some...later.


Still making refinements to the blog:

  • header- Played with the coding on the template...increased top padding so the title moved down. That gap between the header and the posts was bothering me.
  • changed font color on sidebar
  • added a place to note what I'm reading currently- I'm about halfway through 'Spanish Dagger' a China Bayles series mystery by Susan Wittig Albert. I've finished 3 other books in the last 3 weeks or so since I've begun reading again.
  • tried some different goodreads widgets- Didn't like them...they seemed too large and 'cluttery' for just noting what I've been reading lately. One of the reasons I changed my blog design was to pare down the clutter so I don't want to add more. I do like goodreads for cataloguing my books. I might actually finish some day, lol. If you click on the small goodreads badge on the sidebar you can see how far I've gotten.
  • working on blog roll- Locating old and new (to me) CFS blogs...reading and adding to my blogroll. Been meaning to add a blogroll for a long time but the task seemed daunting. I may add other types for my other interests later...I have so many I like to visit. CFS/chronic illness blogs are great support and sources of information but I find i can't read them continuously. I need to alternate and spend time on other thoughts and things. How about you?


Went out on the deck for a few minutes this morning and admired my 2 cucumbers (one is straight, about 6 inches long...the other is curled and about 3 inches long) and 1 red bell pepper (still green now...it will turn red as it ripens). Harvested tomatoes (lol, 5 cherry tomatoes) and a couple of large handfuls of sweet basil. Oh, it smelled wonderful! Crept back in with my prizes after about 5 minutes and crawled back in to rest.

Reminds me...I never got any lemon basil seeds planted. I wonder if it's too late to try...basil really likes it warm. Maybe I'll sprinkle some seeds in a pot this weekend if I'm feeling better. I've got to start saving a little energy and making time for the things that feed my soul. One of my first trips in the wheelchair has to be the nursery. I haven't bought any plants since spring.

There were so many things I wanted to add to my container garden and just haven't had strength or time to do. I feel like summer is whizzing by. It makes me a little sad. Luckily we will still have lots of warm days even into November. I think the sadness and sensation that summer is slipping by is more an analogy for the feeling that my life is slipping though my fingers...unlived.

Had the strangest sensation the other day...a feeling of sadness came over me and I started crying quietly. No particular reason or sense of something bothering me behind it, at the time...just deep sadness. Looking back now, I think it was that sense of life passing me by and the feeling of loss I've had lately for the small life I had built within the confines of this illness...some small control over it in terms of pacing and taking care of myself. I have to get a handle on things and start taking better care of myself, including saving a little energy and time for those things that feed my soul.


There's more (always) but I'll save it for later.


  1. Kate from Scotland,I can understand the adrenalin surge,I knew recently I was overdoing things but couldn't seem to stop even knowing what the outcome would be..I was glad when I crashed and even though I feel awful know I am glad I am in control of my pacing etc again.I love your blog .Thank you Kate.

  2. Hi Kate,

    Pacing is hard, isn't it? Laughing...it doesn't help that what works some times doesn't work others. The parameters are always changing...keeps us guessing.

    I was pretty good at pacing till Mom came to live with me. Whenever there is a major change in our lives, we seem to have to rework our pacing plans.

    It seems like we are always having to re-invent ourselves living with this disease, too. You think you have come to grips with it and then all the rules change...again.

    Thanks for dropping by and reading and commenting. Please come again...I love 'visiting'!

  3. Ah, your cucumbers and peppers and sweet basil sound wonderful... Delighted you have read Like Bees to Honey, Caroline is a fabulous writer (we have the same publisher). I would highly recommend In Search of Adam, her first novel. I still have to read Bees, it is on my shelf. A shame you are allergic to paperback ink! My novel has recently come out as an ebook, so if you ever get an ereader, maybe you can read...Take good care of yourself. NASIM

  4. Thanks, Nasim, my container garden feeds my soul (laughing, if not my belly) and keeps me going mentally. I did eat my little 4 inch cucumber (somehow it had grown in my mind to be 6 inches when I wrote the post)...it was delicious.

    Poor garden has been so neglected this year...my plants have to be tough to survive the infrequent care. (Funny, I often see analogies for real life in gardens and gardening.).

    Luckily, container gardens don't require weeding and other heavy care like regular gardens. I haven't done much since spring but creep out and water a little for a few minutes every few days.

    Thanks for the recommendation re Caroline Smailes...I learned of her book 'Like Bees to Honey' on your blog and went looking for it. She's very talented. I'm looking forward to reading her others.

    I found your book at the Book Depository in e-book form (again located through your blog). It's next on my list to read. :) I don't have a stand alone e-reader like Kindle or Nook but I'm able to read e-books on my laptop.

    You take care, too. Thanks for dropping by and reading and commenting. Hope to see you again soon.

  5. pacing is definitely an artform...one i still haven't mastered after all these years. it's so horrible to live in that adrenaline state and just feel as though you're making it from one crash to the next. and i certainly find it harder to do things at the rate i need to when others are around me - i wish you luck finding the way to protect your energy as you adjust to living with your mum.