This video was made by Laurel of Dreams at Stake who has very severe CFS. Because of that it took her over 4 months to make.
It is well worth watching.
As always with You Tube videos I post on the blog, it doesn’t fit my template, so please do click through at watch it either at Laurel’s site or You Tube.
Laura Hillenbrand is the author of the best-selling book, Seabiscuit, which I finished reading last week. She has now released a new book called Unbroken, that I have on reserve from the library and I’m looking forward to reading.
While I am attracted to both books because of their subject and because they are so well written, it is also because Laura Hillenbrand has severe CFS. She’s been ill for the better part of 25 years, much of that time spent in bed. Despite that, she’s written one best seller and it’s looking like this new book may well be one as well.
While I don’t know her and she’s never heard of me and never will, I respect her so much, to have achieved what she has. My writing, while probably never of publishable standard anyway, just faded away on me, dried up and vanished completely. I miss it, but there’s just nothing there in my head any more for me to work with.
Hillenbrand has managed not only to do the hard, physical and mental work of writing two books – she’s done all the research and work involved in preparing to write them as well (check out the enormous number of research books on her shelves in the video below). I couldn’t take in that information and collate it into anything coherent any more, let alone then write it all up so beautifully (and I’m not as sick as she is).
I’m very impressed (and I admit, a little jealous) and I wish Hillenbrand all the very best, both with her health and her career. It’s so good to see someone with this awful illness doing so well.
The video below is from NBC’s Today Show and talks mostly about the book, but also a little about the illness. It’s so nice to see something in the media that acknowledges how serious it is without being disbelieving, disrespectful or mocking.
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(Why did the kid have to be so impatient as to be born in the last week of the school holidays? I was happily planning for April; he’s the one who decided to arrive in January.)
So, way back around the 10th December, we decided to invite his friends around to our place for a pool party and barbeque. When I asked him who he wanted to come, he listed over half the class. And the list changed each time. So in the end I just invited all 21 of them. With that many, spreading them around our yard, the pool, the sandpit and the trainset seemed the best possible solution. There’s also going to be another birthday surprise (Marcus shouldn’t be reading my blog, but he could now, so I’m not going to risk spelling it out), but that is also an outdoor one.
At this point I have 13 confirmed attendees, several of whom are bringing their parents and siblings. And the long range weather forecast on the news tonight was for heavy rain on Saturday. My planned activities are all outdoor ones. What am I going to do with all these people if it’s pouring with rain?
My health is totally crap right now. I’m struggling to think straight – my thought patterns are certainly extremely linear and if I don’t have a list, I’ll just forget things. My body doesn’t feel sleepy, but it’s just done and keeps trying to tell me to lie down and close my eyes. And I have muscle aches all over and eyes that hurt just from being open. CFS is not kind to mothers looking after hyperactive nearly-six year olds for six weeks in a row. (I’ve had wonderful help from Dave, but there’s still I lot I just have to do myself, especially when he’s at work.) My resources are very, very thin at this point.
Which is a long winded way of saying that I simply don’t have the focus, brainpower and energy to start planning indoor games at this point. My mind goes blank if I just start to think about it.
I’m hoping and praying for good weather, and failing that, some other kind of miracle.
I foresee troubled sleep and/or nightmares in my future for the next couple of days.
Since people have been so lovely as to leave me encouraging comments as I’ve dealt with this change in depression meds, I thought I’d post the latest update.
Basically, I went back to the doctor today and we both agreed the new meds haven’t yet done the trick. After talking around the options, we decided to increase the dosage of the current med and hope that that works.
I’m keeping my fingers crossed as I’m totally over this whole experiment already and starting to wish I’d never started the whole mess.
But I say that with my cross stitch sitting beside me as I continue to make slow but steady progress with part 1 of Illuminated Medieval Sampler. I’d pretty much stopped stitching on the old medication, as well as slowing hugely with my reading and stopping patchwork and writing completely. I’m still struggling with the reading, but I’m not at a complete halt, so that’s something.
Hopefully this latest change will be what is needed and things will go up from here.
Here’s my latest on Illuminated Medieval Sampler. The square-ish border has been filled in and I’m onto the swirly filigree border next.
I also put it on the scanner to do a close up of all the Rhodes stitches and the sparkly backstitching. The actual colour, IRL, is probably somewhere between the two pictures, but the bottom picture is definitely a little washed. Given scanners, cameras and the differences between everyone’s monitors it is so hard to get an accurate image.
I’m still enjoying myself stitching this, so I shall carry on with it while I am. It’s also been good as I deal with the whole depression medication thing as when I’m feeling less than relaxed, I can usually still manage to sit down and stitch a few stitches in a relatively calm manner.
Regarding the depression, it came roaring back Saturday and I immediately decided against toughing it out any longer. I’m now on a new medication and waiting for it to get up to full strength. Hopefully it won’t be too long. Right now, I’m feeling okay, but I also know that everything is a bit “off”. I figure when I forget to ask myself if I’m feeling better, that’s when I will be.
Things aren’t so good now. I’m dealing with a lot of anxiety and I keep feeling like I want to throw up – not in a my-stomach-is-sick way, but due to anxiety.
I’m getting more emotional (good in one way, as I hated being almost unemotional) but that’s turning into feeling down. Dave did point out that the beginning of winter, as the weather is going nasty, is not really a clever time to stop taking one’s antidepressants. Roll on, SAD. I guess I better make sure I get some sunlight whenever there is some.
I keep wanting to crawl into bed and hide, which also isn’t really a good sign. But I’m very tired and the rest is lovely.
I’m very tempted to just abandon the last few days of a quarter dose and go straight to nothing, so the drug can finish working out of my system and I can find out if feeling like this is due to the withdrawal or the depression. At the moment it could be either, which means making plans about what to do next is difficult.
Oooooh, I think I’ve hit the hard part of the withdrawal from the antidepressants. I’m dizzy and light-headed most of the time now and it is really disconcerting. I read some posts of forums about coming off Effexor before starting and they called these light-headed moments ‘brain zaps’, like your brain has just been zapped by fizzy electricity. That’s just what it feels like.
I’m also nauseous, light sensitive, headachey and very, very tired.
This is not fun at all.
But, so far so good, I don’t seem to be depressed. Long may that last.
One of my reading groups has moved over to Good Reads so I’ve finally got myself set up over there with the username of – you guessed it – rocalisa.
I had tried to import my Library Thing content into Good Reads a while back but it didn’t work to my satisfaction, so I have just deleted 400-odd books (manually, one by one) to get the catalogue the way I wanted it. Now it just contains my 2009 reading, by current books and TBR and each book I’ve read has at the very least a rating, tags and a finish date.
Yes, I know, it’s all kind of OCD having to make it just the way I wanted, but it would have totally bugged me every time I went over there otherwise.
Life carries on as normal here.
We went out and bought Marcus winter school shoes today. For some reason all the one with velcro straps were very girly-looking and the “boy” ones all had laces. Marcus totally isn’t ready for laces (we have enough trouble convincing him he can get dressed by himself – which he can, he just prefers to have Mummy or Daddy help) so it took a bit of hunting around before we found some suitable ones, but we did in the end.
I’m into my second week on a half dose of anti-depressants and it remains a case of so-far, so-good. I still get moments of light headedness and there are certainly moments when I feel more “down” or in a state of mind of think of as “not-care-y” where I’m rather lacking in motivation, but nothing has been really bad. I go back and see the doctor again on Tuesday, so we’ll decide then what step to take next.
Well, so far, so good. I was feeling very dry eyed and light headed this morning. It’s still there tonight, but a little less I think. I’ve found that if I take things quietly it’s much better, but if I do lots and move around a lot, it gets worse. That seems to me to be a good excuse for going easy.
Another Marcus story…
We went to the doctor on Tuesday for me to talk about a bunch of things. One of these was to get a prescription for a course of B12 injections which should help my energy levels (and I think they have as I’m not as totally trashed as I could be). Once I’d done all that, I needed to get the nurse to give me the injection. So Marcus was playing with the toys in the waiting room again while I waited for my turn. She came to get me and I said something to Marcus like, “I’ll be back soon,” and went with the nurse, leaving him to play.
A little later I’m sitting in the nurses’ room (partially undressed so she can reach my upper arm) when the door opens and there is the receptionist with Marcus. He can’t have heard what I said and thought I’d gone without him.
I spoke to the receptionist later and she said he’s come up to her and said very seriously, “Excuse me, can I tell you something?”
“Of course,” she agreed.
“My name is Marcus,” he confided, “And I can’t find my mummy.”
She said he was so polite and serious about it, all when he thought he’d lost his mother.
Sometimes, my son is just so adorable.
I took a half dose of my antidepressant this morning as the beginning of an attempt to come off it. Whether or not I’ll be able to come of the stupid things altogether, or whether I’ll need a new one remains to be seen. My doctor and I will work that out as time goes on.
I’ve been unhappy about some stuff in my life for a while – basically all my creativity seems to be abandoning me, from my creative writing (just gone with everything untouched for about two years) to my stitching (just don’t feel like doing it) and even my reading (getting harder and harder), along with some other stuff that doesn’t need to be mentioned in a public place.
I recently went to see a CFS specialist (something I meant to blog about but never did – maybe one day) and something she said made me wonder if these things related to the antidepressant rather than it being a case of “just me” as I had been assuming.
All the same, trying to go off an antidepressant is always rather scary as you never know if the depression will come back or what the withdrawal will be like. And the withdrawal from this one (Effexor) is supposed to be especially nasty.
So all in all, I’m feeling pretty nervous about it all. A few good thoughts would be appreciated and we’ll see how it goes as the days go on.
Health and generally keeping up with life (getting a five year old to and from school each day, getting homework done and having him home in the afternoon is doing me in) have got me pretty run down.
I’m behind with book reviews, although I still hope to get caught up again. I have Promises in Death by J. D. Robb, Dewey by Vicki Myron and Mothstorm by Philip Reeve to catch up with. I’m reading a long SF book now (Ties of Power by Julie E. Czerneda) and have an even longer one to read after that (Lear’s Daughters by Marjorie B. Kellogg) so that should at least give me some breathing time to get caught up.
I’ve done a little bit of stitching. I’ve been working on the next page of Dawn Star and since that includes her face, I got kind of obsessed about getting the face done and being sure it came out right. It is done and (IMHO) it looks just lovely. However, the exhaustion has stopped the stitching for now too, so I’ll take a break before finishing up the rest of the page.
I have about 40 minutes to go in my audiobook (The Grey King by Susan Cooper), but it’s all about the head into the book’s climax and I’ve been putting it off in the hope I’ll be a bit more “with it” soon and be able to take it in better.
So all in all, things have ground to something of a halt as I do my best to get through each day and not much else. Hopefully things will start to pick up again soon.
