To buy or not to buy...

Do you have an e-book reader?

I'm wondering if it is a good idea for me. I adore books. My personal home library is over 3,000 books, mostly hardcover. (I'm allergic to the ink used in paperback books and newspapers.). I never, ever thought I'd consider anything but the real thing. However, holding one open and up, especially in bed (where else?) is very, very tiring and frequently impossible these days. I've read a little online but the glare is tiring and my position is limited.

E-readers are pretty expensive and even worse than the initial expense can be the cost of the books. When I was able to shop a lot, I got very nice new and used books at Half-Price Books for almost nothing. Laughing here, I was the queen of clearance-priced books.

It is hard to think of paying $10 or more for a book (that will never grace my shelves or be held in my hands...sigh). Now what little energy I can muster for shopping goes to survival needs, of course. Hmm, thinking about it, I guess I will have to pay more for books buying online anyway since I'm rarely able to cruise Half Price anymore.

Many of the e-readers, like Kindle from Amazon and Nook from Barnes and Noble are associated with one store and I assume you can't buy books from other sources. That's okay, I guess, if you are primarily a reader of best-sellers...I'm not. What if you like more obscure books, like I do? Maybe you can't find more obscure books for an e-reader anyway.

I used to be a voracious reader. I haven't been reading nearly as much the last couple of years. I'm not certain why...if I've lost interest due to the CFS or if it's the difficulty holding a book or what. I comprehend and remember what I read. I'm not sure if get more fatigued reading for fun. I know I do with heavier technical reading or under pressure.

I read a mystery a couple of weeks ago. Light, fun reading...a Diane Mott Davidson, Goldy the caterer, one. Other than holding the book it didn't seem to tire me too much...I really enjoyed it in fact. I'm reading 'Like Bees to Honey' online now, a novel by Caroline Smailes. I'm not certain if reading it on my laptop is tiring me more or not (glare). I am tired after reading but I'm in sort of bad shape right now anyway. Hard to know if it's the act of reading or the medium or my condition right now. I am enjoying the book.

I know some people with CFS have great difficulty reading. I do, if the material is very technical and complex or has extremely long and convoluted paragraphs. I can still read technical things (I love science), I just have to take it in smaller chunks. Reading anything is easier when the paragraphs are shorter.

So many variables to consider and with CFS you never know from day to day what or how things are going to affect you. It's hard to judge sometimes. Sometimes, it isn't apparent immediately if something has over-tired me, either. It may take doing it a few times or more to be sure...seeing a pattern emerge. With other things, it's apparent right away. For example, I can't listen to audio-books at all...they exhaust me completely and very quickly. I have a lot harder time processing things auditorally.

I'm still researching the different e-readers and I will want to see one first hand before I decide. I need to see how easy it is to read, how heavy it is, how hard to hold, if I think I could prop it up. etc. I'm just not sure. As expensive as they are, I don't want to buy one and find I get too tired reading or I'm just not that interested in reading now. I wish you could rent or borrow one first to be sure.

Anyway, just thinking and wondering about whether an e-reader would be a good option for me.

Anyone tried one or have any info or suggestions?

Writing with CFS...

Writing with CFS issues continue to frustrate me.

I'm either brain dead and can think of nothing to say.
or
I have much more to say than I have strength or stamina to think out, type, edit, and post.

I either find it difficult to get started and share something personal.
or
I have a great need to share and explain. (This is a newer phenomenon.)

Now that I'm learning to share more, I find I sometimes (frequently?) want to explain when I share...going on to explain more about CFS and life with CFS, for example. Part of it is that I'm used to writing more informational than personal pieces. I'm wondering, too, if this is an attempt to make it less personal and more clinical...a format I'm used to from my profession and my love of science. Still working on those sharing personal stuff issues. Whatever the reason, it results in longer posts. It, also, often results in me going off to look up some bit of information to include...getting me even more overloaded and bogged down.

Most of the time, I still wind up wanting to write much more than I can handle...frustrating. I've been practicing writing shorter posts on a blog in another venue and thought I had gotten much better at it. However, it's a site where I don't really discuss any personal issues much...especially the ones dealing with my illness. Coming back here, I've discovered that I still have difficulty writing shorter posts. I think it has to do with feeling freer to share more personal topics and discuss the illness issues. My cup (mouth/fingers) runneth over...

Since I've been back I've had a lot to write about but not enough strength to do it all or edit it when it gets too long. Just thinking of what to include or not is more work now. It's also hard for me to go back and pare down or decide what can be divided into shorter posts. Especially, when I've gone overboard and gotten stuck in the middle of a post that has taken on gargantuan proportions. It's even difficult to think of ways to rewrite to make it more concise. Word-finding difficulties add to the frustration. (Extremely difficult for a former speech-language pathologist, as well as a writer, to cope with these changes/losses. Language is/was my life! Sigh...).

Wonder if other writers with CFS experience these issues? Now I'm wondering, too, if there are other speech pathologists with this disease...sharing these issues. There must be.

Slow dancing in the fast lane...

Catching up...

I've been very tired and recuperating since attending a regular monthly get together with a group of friends last Saturday night (2/21). I overdid it some just going and have been dealing with the 'payback' from pushing myself and using more energy than I really had. The payback this time was fever, a 'heavy' chest (fluid), body aches, and fatigue, etc. for the first 4 days or so, then worse than usual fatigue (a very relative concept) since then. The flu-like symptoms were a sure sign that I did way too much.

It's so tricky because with CFS what is 'too much' changes all the time...it can be hard to gauge at the time that it's happening. I left early after dinner and didn't stay for the usual fun of playing Mexican Train dominoes. I tried not to push myself too hard but it was too much. I knew in advance that just going was probably 'too much' but I did it anyway.

I did the crime and did my time dealing with the payback. Grrrrrrrrr, everything is a trade-off these days. It was nice seeing everyone though and getting out. It was a potluck and the food was incredible...we all ate like pigs! I will do it again this month if I'm at all able.

*******

I've been too tired to do much writing so no blog posts this last week. Most of my writing energy has gone into e-mails and occasional IM's staying in touch with friends. Talking on the phone takes a lot of breath support and with my shortness of breath right now is difficult. So I save most of my telephone 'energy' (ha ha) for talking with my mother as she doesn't have a computer. I started a few blog posts and got too tired to finish them. They will eventually get finished or rewritten and incorporated into other posts.

I'm still learning how to pace myself with writing. I'm learning to brainstorm ideas, jot down my thoughts, write snippets then rest or at least change mental activities, save ALL my writing, use some previously written snippets in what I'm writing or as a springboard, and combine various snippets to put together pieces. I'm also learning to be more patient, be satisfied with less (working on 'less is more' concept), share more of my life, enjoy what I can do, and be less of a perfectionist and less demanding of my writing (and myself).

One discovery I made...if I use Google docs I can save and organize all my materials and easily transfer them to Blogger. I can take previously written segments/snippets/notes, plug them in, move them around, rewrite some, and edit without any problems when I post to Blogger. Using some word processing programs to write in (like Microsoft Word) or store writing and notes results in extra 'junk' that messes things up when you try to transfer your writing to Blogger.

*******

I ordered a new home phone with an answering machine built in and a headset from Amazon. I can't do anything that makes me hold my arm(s) up for long. For some reason holding my arm up is extremely fatiguing. Even something I used to take for granted, like applying mascara, can cause devastating fatigue. Using a headset gets around the problem of holding up my arm(s) and leaves me a little more energy to talk. I need to get a new earpiece for my cellphone now...I've had to stop using it completely. Using it is even worse with holding up my arm because it is so small and has to be held just so to hear and be heard.

Of course Murphy's Law kicked in and something was wrong with the phone or the headset. There was a loud hum when I tried to make calls using the headset. I got in touch with Amazon, explained the problem, and they 'overnighted' a new phone to me. I have Amazon Prime so I don't know if the over-night replacement was their usual operating procedure or because I'm a 'premium' customer. There are some kind of scary things in their return policy (one thing about returning things in a resalable condition...they don't say anything about defective goods or else I missed it...and stuff about shipping charges) so I'm waiting to see what happens.

Murphy was really working overtime so when I received the new phone...guess what? You got it...the same problem. Evidently, the problem was the headset not the phone. (I told Amazon I wasn't sure which was not working...how was I supposed to know? The customer service guy was very nice but as is usual in these cases, there was a bit of a language problem complicating things.).

Later, after discovering it wasn't a problem with the phone after all, I went out and rootled around in our old electronics parts stash and found a ratty old headset and tested it. Sure enough it worked like a charm. So now I have to get back with Amazon and tell them it was the headset and not the phone, work everything out, pack it all up, and ship it back to them. Yikes, I really don't have the energy for all that, but I guess I don't really have much choice! .

Earth laughs in flowers...

I love to garden. This year I'm trying to put together a container garden on my deck. I had thought I would have a real garden but it doesn't look like it will work out this year. I do like the idea of having everything on the deck where I can see it through my patio door though. I also have a porch swing on the deck that I love to sit in, observe nature, daydream, and write. It will be nice having pretty flowers and plants right there to enjoy. Containers should cut down on the gardening chores too (no weeding for example) and make it more manageable for me with the CFS.

It's already warm here most days...it's been in the upper 70's a lot. We still have some cold nights from time to time (it was 39 last night) but they won't last much longer and the daytime highs are ranging from 59 to 76F. It was cooler today at 59 but sunny. Basically, spring has pretty much sprung in Houston, I think. I couldn't be happier about that...I hate cold weather and the gloomy, dreary gray days get me down. It also means that I can quit dreaming about my container garden and start making it a reality. I'm mulling over everything I'd like to get and editing and re-editing the list. I have to be careful not to get so many that I get worn out watering.

So far I have a bunch of Knock-out roses that I bought on clearance not too long after Hurricane Ike. They were about $10-$15 each to start with but I got them for $1.50 - $3 each. They've done well over the winter...blooming periodically...very pretty. They are supposed to be very disease resistant and pretty much tough as nails. That's a very good thing! Most are still in their original nursery pots. I've only gotten 3 transplanted into big deck size planters that I already had. (Those planters have always had some kind of rose in them over the years.). I got 3 great big pots on sale recently (terracotta colored plastic...plastic doesn't make the soil dry out as quickly and the big pots won't be so heavy). A friend says I'm going to need a truckload of potting soil to fill them and my other pots, lol. I think he may be right.

Knock-out Rose

I also have 2 tomato plants I bought at the same time as the giant pots. I have never tried tomatoes in pots...I've heard that they do okay though. These are smaller tomatoes...not sure the plants will be that small. I'll just have to see. One is Husky Cherry and the other is Patio 100. I was really looking for herbs when I saw the stand of tomatoes. They had basil but it's a little too early...basil likes it consistently warm. I was tempted by some big gallon pots of rosemary and lavender but resisted. I grow basil from seeds usually and I'll get little pots of rosemary and lavender.

I definitely want rosemary, sweet basil, lemon basil, and lavender for the container garden. I want to find a pineapple sage, too, when it warms up. It's really neat smelling and gets nice and big...it has tiny little red flowers and the young leaves are bright green some almost chartreuse. I'm thinking of trying to grow several (or a bunch) of herbs together, maybe in sort of a tub (not a bathtub tub...although I think a claw foot tub might be kind of quirky and cool in a garden sometime). The only other vegetables I'm thinking about are bell peppers and an interesting mix of lettuce. Rainbow coleus would be a pretty foliage plant to add.

Lipstick Pink Hibiscus

As for flowers, I know I want some lipstick pink hibiscus. I love them...I even wrote poem with them in it. I'm not sure what else right now. In a regular flower garden I've always had some mealy cup sage and coreopsis with some kind of white flowers and hot pink ones (blue toned pinks not yellow pinks). I love that combination. Lots of other flowers in those color families but they were the backbone...the standards, I always had. I don't like reds or oranges in my flower garden. For me blue toned pink is a very happy color...it always makes me feel happy. I find that the pink, blue-purple, yellow, and white all lift my spirits. Colors really can affect your mood.

It would be nice to have enough growing to cut some for the house. I always used to have English cottage style flower gardens and herb gardens. There were always little informal bouquets of flowers, herbs drying, and home-made potpourri in the house. So pretty and smelled so good. I don't think that will probably be too possible or practical growing in pots, though...I don't think there will be enough.

I'll pick up a few more plants and flowers on my next good day when I make my grocery run. The potting soil will be a little more problematic.

My head is full of garden dreams these days!

Trying to teach an old dog new tricks...

Well, there's no doubt about it, I have to learn how to write shorter blog posts. I had forgotten what it was like to be too tired to finish something I wanted to write. I am definitely in the midst of being reminded now. Grrrrr! Another gift from CFS...fatigue, difficulty concentrating and remembering...now what was that other thing I was going to say? oh, yes...and word-finding difficulties.

All very frustrating for a writer. I have all these blog posts that I started but didn't finish because I was too tired. I love to research and prepare in depth, well-documented pieces using a number of different sources when I write. Sigh, I'm not doing very well at that right now, though. Looking at these unfinished blog posts, I get frustrated for two reasons. I'm frustrated because I haven't finished them and because I realize that pushing myself to finish them is breaking the rules.

Writing this now is pushing myself. I keep revising, trying to synopsize what I want to say, so that I get my message across but I don't overexert myself. I find myself wanting to explain and educate people about CFS. There is so much to explain though and frankly I just don't have the energy to do it justice. So I sit here writing and revising...trying to keep things brief but understandable. I keep painting myself into a corner, though, wanting to expand and explain and having major input from my body telling me I have to stop.

Any kind of over-exertion is bad for you when you have CFS. People with CFS react very differently to exertion and exercise, whether it is mental or physical. Hard to believe, but when you have CFS, thinking is just as tiring as running. Sigh, I love to think and learn, compare and contrast, ask questions and look for answers, all of that good stuff. I have to be very careful not to overdo it.

If I push to do something I will pay and the payback will be disproportionately large in comparison to the activity that caused it. In other words, if I push too hard at anything, mentally or physically, I will get sick(er) and it may take days or weeks for me to recover from it. Sometimes doing even very small tasks can be overdoing it. To make things more frustrating, with CFS the rules change all the time. What was okay to do yesterday is not okay to do today or tomorrow.

I'm not sure how I'm going to do it yet. I have to pace and take care of myself but I refuse to stop thinking or writing. I have to find new ways of doing things and I have to learn to write shorter less labor intensive pieces. I have to learn to break what I want to write about into more manageable segments. Lol, all this is tricky, too, because it requires a lot of thinking and planning....which uses a lot of energy. Round and round it goes.

I also need to learn to approach writing in a more relaxed way. Not so easy...I get excited when I write or think about writing...it's fun and I like it. Did I mention that getting excited uses a lot of energy and it can be easy to overdo that, too?

Well, I've been doing some problem-solving as I've been writing this and I'm getting some ideas about how to manage it. Wish me luck. I'll let you know how it goes.

Through a glass darkly...

I haven't posted for a while and I've missed it. I've started out to write many times and either been too foggy to make a start or gotten half-way through a post and been too exhausted to finish. This is a very difficult post for me to write and share.

I have Chronic Fatigue Syndrome (CFS) and I am going through a difficult time with it right now. For about the last year, my CFS has been worsening again making it harder and harder to do everyday things. It's hard for me to talk about this. I'm a very private person, I try to look at things from a positive perspective, and I don't like talk about sad/depressing subjects a lot, especially being ill.

In the past, I have preferred people to 'see' me instead of the CFS. Unless there was a pressing need for them to know, I didn't tell them about it until I got to know them better or I felt they needed to know. I didn't hide it, I just didn't make a big deal of it. People close to me knew, of course. The worsening of my CFS has made me take another look at how I handle telling or not telling people. It's much more obvious now that I'm not functioning the way I was and I look sicker.

To keep quiet about it now would result in lots of misunderstandings. I would wind up seeming unfriendly and aloof by not taking calls and by frequently turning down invitations. Not to mention downright rude when forced to cancel at the last minute because I'm too ill to go. I would wind up being even more isolated than the illness itself makes me and that is isolated enough.

Frankly, I just don't have the energy to be subtle either, lol. I don't know if is the just the fatigue but I've been having doubts about keeping silent about the CFS for a while now. It's such a big part of who I am that to keep it hidden is like denying who I am, as well as being tiring in itself. I'm having to rethink things.

On top of the symptoms that go along with CFS and rethinking how I am going to 'present' myself, I'm feeling frustrated and sad, and, yes, a bit afraid. I'm not just having to decide how to present myself...I'm having to 'redefine' who I am...again. How do I present myself (and by extension, the illness) when I don't know who I am anymore? Facing getting worse again is very hard and I'm going through something of an identity crisis right now.

Who am I? What am I able to do? What do I have to offer? Where is my life going? I’m working my way through it but I am experiencing a great sense of loss and frustration. I’m really surprised by the extent of it...I thought I had gotten past this stage and accepted, but here it is again 5 years later. Of course, I had also improved and hoped not to get worse again. Here I am worse again...desperately hoping it's a short-term thing and I will get better again.

Note: the collage and found poem above was created by me for my illustrated journal. Clicking on the picture enlarges it.