Life with ME
Yesterday the GUARDIAN ran a very good article on life with ME:
http://lifeandhealth.guardian.co.uk/health/story/0,,2278074,00.html#article_continue
He’s right about the unpredictability of it, and what that does to you–and what other people, especially the experts, can do to you by insisting that you do it their way.* I’m not much of a sleeper; what I do is go comatose. I’ll come back to myself and find that I’m doing nothing while staring blankly into space. Bach’s fugue states are much more fun. I’m surprised that the estimate is as low as 240,000 people in the UK with ME however: but then they’re still arguing about defining and measuring it.
So, next week is ME Awareness Week, who knew? Well, I’m not on any support lists so I don’t get the bulletins from the front. My interest is particularly snagged by his remarks toward the end of the article about trying to be healthy in an unhealthy society. There are no upsides to having a stupid illness; you’d much rather be well, and deal with what needs to be dealt with.** But if you’re forced to be hyper-vigilant about stuff that most people can let slide, well, you notice things, you can hardly help it. And maybe it’s hard sometimes not to rush up to the worn-looking mum in the shop who’s letting her toddler eat sweets to keep him quiet and give her a lecture on child nutrition and the appalling rise in child diabetes and ADHD, but it’s probably her boss who needs the lecture, and who has the shareholders on his neck and a small but expanding habit of driving under the influence because he ends every working day wired out of his gourd, or her husband, who’s taken a second job so they can afford to pay the fees for the decent rest home for his mum, who has Alzheimer’s and his dad can’t cope any more, and maybe they’ve got a special-needs kid or even a specially-talented kid who should have expensive lessons . . . and so it goes. It’s the way the world has gone, and sure you can buck it–and I imagine that most of the people who read the blogs of writers of fantasy are bucking it to a greater or lesser extent–bucking is hard. And while I’m ranting, let me add that I’m also one of those sad clueless ought-to-get-out-more prigs that think of course all the TV and film and video-game sex and violence has an effect on its audience and therefore society. This is no-brainer territory to me. But then I think all kinds of unfashionable things. I’m old, you know? This is how old people get. Grrrrr.
I don’t seem to be in a very good mood.*** Well, the ME is hanging on and hanging on and I’m bored with it. I don’t like having no brain, when you try and learn something and it just slides right off, like water over granite. You might manage to wear a channel in the granite after a few millennia, but it’s not an ideal system for little short-lived humans. The only thing I might cavil about the above article is that he sounds so calm and rational. He doesn’t talk about the rage, the frustration, the depression. Your moods may fluctuate like your energy level does.†
Like another of my favourite kitchen magnets says: No, life isn’t what I wanted. Haven’t you got something else?
* And that if you don’t, you’re a malingerer. Reminds me of the old test for witches: you throw them in the village pond. If they drown, they were innocent. If they swim, they’re witches, so you haul them out and stone them to death. I’ve probably already told you this story: that I stopped going to see my doctor when she said she ‘didn’t believe’ in ME. That was eight years ago, however, long before the NHS by a narrow margin voted ME into official existence. I haven’t been back to check her story however.
** Rant alert: I don’t believe those people who talk about their cancer or their stroke or their schizophrenia–or even their ME, which I realise is a minor contender in the ghastliness stakes–as the best thing that ever happened to them. There are some amazing and inspirational stories about people who transformed their lives enormously for the better, for the larger, for the more creative, for the more connected, as a result of some terrifying disease or condition, and who say that they wouldn’t have done it if it weren’t for the terrifying thing. Absolutely full points and tea with the queen to the people who do make lemonade out of a particularly sticky lot of lemons, but I flatly don’t believe that the only way to make lemonade is to fight your way single-handed through the hydra-headed ravening panthers that guard the one perfect lemon tree in the garden of the gods. There are other paths to enlightenment than pain and despair. If you want to be grateful that you were given any way at all to enlightenment, that’s fine, and I understand that. But that’s not quite the same thing. Feel free to come all over holy and glorious and argue with me about it but you won’t get anywhere. And anyone who wants me to think about what the gift in my ME is can meet me for pistols at dawn. Yes, the ME has been extremely educational, and I’m also grimly aware that it serves a purpose–since I don’t rein myself in very well, it does the reining for me, and as a result I’m not dead yet–but there is a better way. And possibly thanks to its tender ministrations I may even live long enough to find it. And then the ME can heave a vast sigh of relief and go pester some other poor stressed-out sod.
*** This may just be the result of our morning walk: we went out for a last pass of the season through my favourite bluebell woods before the bluebells go over, and couldn’t get anywhere near them, or much of anywhere else either, on account of the fields in seemingly all directions being full of farmers with vast tentacled machinery squirting toxic chemicals on the crops. So this evening I may either be suffering secondary wind-drift poisoning, or mere I-wanted-my-bluebells crankiness. I’ve often wondered how much I have to thank local agrochemical custom for my ME; at the old house we were surrounded by farmland. I also wonder how much of what sticks to the crops is absorbed through the pads of the hellhounds’ feet.
†Yes, it’s a full time job having ME. Ha. Ha.
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Hooray for you! I admire and appreciate your willingness to say it like ;it is as you do over and over again in this post. I, too, believe that all the violence and other destructive behavior blatted/shoved at us from so many sources must be plain DESTRUCTIVE. This is one reason I never worked at getting ;the TV habit once TV’s entered the world. Yes, I am (70 years) old and very opinionated about these things.
I am sorry that you are burdened and hindered by the ME and suspect your character was clear eyed discerning before the ME stuck. Do keep on taking good care of ;yourself, please. I’m sorry you had poison mist instead of blue bells this morning.
I’ve pretty much stopped watching TV–something has to go and I don’t have time, and I don’t miss it much–but it is a little scary how quickly that makes you drop out of common culture. I wouldn’t have wanted to miss BUFFY! But you start getting, is it a warped view or a true view, of what crap most of it is. People need downtime and no reason not to get it from TV if you want to . . . but I worry about the hard sell advertising, the sex and violence etc. . . .
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I haven’t had a TV for four years now. Luckily, as a teacher, my teenage students keep me informed of popular culture, and I tend to watch a lot of TV on DVD or movies instead, but I’m always shocked at how numbing actual TV can be… and how much my students watch and rely on it. One of my colleagues quoted a study that said the average 18 month old watches 2-4 hours of TV a DAY, and is linking ADHD in 10-12 year olds with the amount of TV they watched as small children.
Of course, my sister with 2 kids, merely sighs and says, “trust me, when you have two kids under the age of four, you’ll bless the TV for being able to give that one quiet half-hour.”
Yes, the electronic baby sitter, I know, and little kids are a NIGHTMARE (sez the woman who never had any). But there’s still difference between the one quiet half hour, which seems to me perfectly reasonable, and the several hours a day.
Since joining the online writing/blogging community, I’ve come in contact with a lot of people who have chronic problems like this. I am always *amazed* at how much people still get done, even when it hurts. Being disgustingly young and predisposed to health (okay, I totally am waiting for diabetes and osteoporosis and some form of cancer – yay genes), I can’t imagine my body telling me “NO” when there’s something I want to do. Or NO, I may not get up in the morning/afternoon and feel *good*.
I wouldn’t think anyone would ever describe ME/fybro/whatever as the best thing that ever happened to them – I really can’t imagine that being the best… – but I am constantly amazed by what people accomplish, in spite.
(I know what you’ve said about not wanting ME to define you. It doesn’t! But knowing about it makes the awe factor even bigger. I feel the same way about people who work full time jobs, have four kids with various hobbies that need ferrying to and from, and still manage to write novels that leave me feeling like a goopy pile of incompetence. :)
Durr, that was me. I reset all my cookies today (not the yummy kind) and forgot that I have to sign back in to EVERYTHING. Guh.
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*Ha.* Happens even to you web babes! **Gloat.** :)
Bask while you can. I plan on being completely awesome for the next several hours, just to make up for that mistake. ;)
Yes, but I’m going to bed and will MISS it. :)
You have my sympathies. The idea that everyone else should know better and thinks they should tell you who are going through it is beyond obnoxious and unfeeling, going into callous and heartless. I appreciate my health a great deal and am very lucky not to have anything debilitating like ME. I have however had a couple of bad bouts of anaemia and the dragging exhaustion, the weakness, palpitations, unsure if you can put another step forward was awful. It leached all the pleasure out of life and it did it insidiously. I just felt as if all was a grey haze and getting out of bed was a major struggle every day. I didn’t realise how run down I was until after I was diagnosed and had started to recover and realised that what I had been going through wasn’t normal, nor was it psychological, it was purely physiological, and life had colours and I had energy. I shudder at the idea of having this come on regularly at irregular intervals, like a cloud raining just on your parade. I hope you know our positive vibes are coming your way. You will feel better soon. (Unfortunately only till the next time, but we’ll work on that when you get there…)
Yes. I could cut and paste as a good working description of ME when its heavy hand is on you. Yes.
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Thank you! May you long CONTINUE not to be able to imagine! And diabetes, osteoporosis and cancer are all to SOME degree if not preventable then discourageable. Start discouraging them NOW while you’re so healthy. :)
Oh yes, I was a milk-drinking kid. At least one big glass every day. And I still drink lots. Knowing what one is bound to get makes it easier to fight it off. :)
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Hmm. Haven’t you complained of skin trouble? Never mind me, I haff no memory to speak of, it may have (haff) been someone else. But milk will give you acne. That’s how/why I finally got off dairy.
Yes, I was definitely the complainer. *complains* I’m not sure I can give up milk, though. (Besides, my mom would kill me! ;)
You’re a GROWN UP! You DRESS YOURSELF now too! :) And if she’s going on about calcium, which is what moms usually are going on about, point out to her that recent studies suggest that the calcium in cows’ milk is only very SLIGHTLY available to human digestive machinery and there are better ways!!!!
Robin, I’ve just been wondering for a couple of days, I know that you can’t deal with cows milk, but have you tried goat’s milk or even sheep’s? I know a lot of people who can’t handle “dairy” who have no problems with one or the other of goat or sheep, but most Anglo/Americans only think of cows when they think of milk. And there are fabulous yoghurts, and cheeses and stuff from other kinds of milk. And buffalo mozzarella, which again isn’t cow, but water buffalo, which is an entirely different thing. If you’ve already tried and I’m scratching a sore point I’m sorry.
The problem is that some of the worst of the trouble begins only several MONTHS later and takes another several MONTHS to go away again. So I haven’t given goat and sheep a proper try–but yes I certainly do know/think about them.
Ditto on the alternative milks. (My dad likes “Oat milk” ….)
I am always amused at the claims of nutrients from foods. Having studied animal nutrition the major focus is always on how much is *metabolisable* not soley “how much is in the food source”. Can be two vastly different things. And yes, *pasturised & homogenised* cows milk is not particularly digestable to people. I have heard claims that unpasturised cows milk doesn’t cause the reactions that “normal” milk does. I know they are worried about diseases from cows milk but hygiene in dairys is so strict nowadays anyway (here in Oz) that risks are very low…… But I still like cheese. In small doses. And sheep cheese is really yummy ;)
I agree about sheep cheese. I should MAYBE experiment a little more diligently. What you want is someone with a cow next door that you have a personal relationship with and drink *her* milk. It’s not all absolutely about hygiene, although obviously that’s the big thing.
I can only agree with Susan from Athens.
Candles, hugs, chocolate… All the usual offerings from this quarter.
<3
Julia
All the usual offerings from this quarter.
********* They’re all good. Thank you! :)
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Maybe this will make you laugh and thus feel a bit better…
http://youtube.com/watch?v=k6C_HjWr3Nk
<3
Julia
LOL! Indeed! Computers!!!!!!
Thank you for passing on this article. I have to say that the one that most hit me was the last one you posted, by [the author of "Sea Biscuit"; I forget her name], which echoed one of the things in this article as well. The whole, “We don’t have an explanation for it, so you must be making it up!” idea is so… I don’t have words for it.
And the whole idea about driving yourself too hard is, unfortunately, true. I’ve regularly made a point of trying to get enough sleep and generally have rest days (days off when I’ll go take a break). I’ve often had people get on me for that, especially at my last job where we had some workaholic supervisors who felt that everyone else needed to work themselves into the ground just like the supervisors were doing. But that’s the only way I can keep from falling to pieces (mentally, emotionally, and health-wise). While I am fortunate enough not to have something like ME, I’m still in need of rest. This is a career-limiting decision, I know, but… At least when I reach old age and am still working because I don’t have enough to retire on, I can hope that my body will remain reasonably functional.
It’s a messy old world unfortunately. This is not a trade off you should have to make of course.
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I don’t have ME, but articles like this and Laura Hillenbrand’s are a window into people’s experiences of life with ME; surely such experiences must improve not only with recognition of ME/CFS but also with it not being categorised as psychatric*.
I do think it is bad news that “alternative” remedies are decried by the medical establishment, who also pooh pooh ME, yet these remedies may be the only thing which helps.
For various reasons (not all financial) the NHS is reactive rather than proactive, curing rather than preventing – how much more effective to teach people how to eat properly, encourage good sleep patterns etc?
*And what does this say abot psychiatric illness? Is it really a catchall for malingerers and unexplained (therefore unreal??) symptoms? I try not to despair, but really….
Arrrgh arrrgh arrrgh, don’t have time for my RANT!
surely such experiences must improve not only with recognition of ME/CFS but also with it not being categorised as psychatric*.
*********** YOU’D BE SURPRISED. Grrrrrrrrrrrrrrrrrrrrrrrr.
what does this say abot psychiatric illness? Is it really a catchall for malingerers and unexplained (therefore unreal??) symptoms? I try not to despair, but really….
*********** And what is it about chopping people up into BITS? All physical has a psychiatric/psychological element and vice versa. ‘All in your mind’ DOES NOT MAKE IT UNREAL. Just for starters by definition it ISN’T all in your mind . . .
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Hugs you.
Threatens ME with a little visit from Mr Bolty if it doesn’t leave right quick.*
I’m sorry you missed your bluebells, and I hope you can visit them tomorrow. I must away, the younger spawn is waiting for her turn on the PC.
(More hugs)
*My favorite lightning bolt; Hellgoddess version of Mr Pointy
Hellgoddess version of Mr Pointy
******** ROTFL!!!!! Thank you! (And we DID go back to the bluebell wood today!)
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I too appreciate your willingness to say, No, being ill does NOT make me a better person, thank you so much! Brave face and all that, but really… it sucks, and there’s no other way around it. I’m going through a mild depressive phase at the moment and am spending way too much time gazing speculatively off into space; when I finally stand up I am mad, mad, MAD at the time wasted and the general sense of uselessness. GRAH. :)
YES. YES YES YES. Depression is maybe the worst, because it prevents you from doing ANYTHING.
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Yes. I’d have replied more and sooner, only I was staring off into space. :)
I’ve got a long drive today up to Michigan–sometimes long drives help me sort out my brain, and sometimes they make me all the more moody. We’ll see! I remain optomistic (which may seem odd for a depressive–but life is filled with contradictions! :) )
Well, good luck! :)
::hugs::
Here’s a pic to cheer you up – a pup with a gumboot fetish!
http://www.flickr.com/photos/21742944@N05/2474347889/
AWWWWWWWWWW. (You call them gumboots too? I thought it was England-English.)
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Can’t recall anything other than “gumboots” used. Certainly never used “wellies”. That was a Brit thing. hmmmm But we are a melting pot over here ;)
I am currently enduring the misery of chemotherapy, but I know that next month it will all be over, so I can just grit my teeth and put up with it temporarily. You have to find the courage every day for the rest of your life to manage your illness, and that’s a whole different mindset. I think you are proving very effectively that you are you, and you are not defined by ME. It is perfectly all right to sometimes have to rail against the unfairness of your lot – after all, it’s not you spraying the poisons in the air.
I’m hoping that Kerry Greenwood’s* recipe for Chocolate Grog (Cocoa for grown ups) might hit a cheering spot for you:
Ingredients
500ml milk
75g bittersweet chocolate (or couverture)
pinch each of allspice and ginger
1 tablespoon honey
75ml rum
200ml brandy
cinnamon stick
nutmeg to sprinkle
whipped cream to top
Method
Put milk, chocolate, allspice, ginger and honey together, heat and stir. When it is a little too hot to drink (but don’t let it boil) remove from heat, add alcohol and cinnamon stick. Serve immediately, topped with whipped cream sprinkled with nutmeg. Serves 2, but you don’t have to share!
* Kerry Greenwood is a Melbourne-based author of crime novels;l one series is about a baker, and contains recipes. This is from “Heavenly Pleasures”.
Hope it works for you
Susan in Melbourne
I will certainly have to look for her books. :)
It is gallant of you to say that when chemo is over it’s over, but you’ll be looking over your shoulder for the rest of your life, or your doctor(s) will be doing it for you. And it’s a long recuperative period; I have a friend who went that route last year, and she’s still tired and moving slowly, although all her tests are clear and her doctors are pleased.
The very best of good luck and strength to you.
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I have been told so many times by many doctors that they don’t “believe in CFS–ME–I fired them all. I said, I’m sorry, I didn’t think this was a faith thing, I thought medicine was a science. God was I pissed.
Having ME is like–hell, like what you say it’s like, and the post about anemia above, and like being tortured by some large puffy pillow in an even larger hand–you stand up you get knocked down. Again and again and again. And when you do feel better–oh I hate this the most–you either blow it by getting up and trying to do all the things you know you SHOULD be doing or you lie in bed shivering because you know it’s NOT GOING TO LAST. You WILL feel bad again. No way around that, at least not, so far, for me.
I’m tired of it all. At the same time I am much better than I used to be–when I first got sick I was flat for 9 months. And then staggering for the next 2 years, then flat again for 3 months, then staggering–now I manage. I have streamlined things. I get by. My house is never neat AND clean, and the laundry always needs to get done, but I pretty much do things on my time. Because that time out there–all those people running around like crazy–I can’t do that kind of time.
OK. Shutting up now.
P.S. I’m so sorry you have this monster. My doctor told me, when I first got sick, “My dear, you have the great marauder.” He wasn’t kidding.
Robin,
It occurs to me that we spend our lives having our eyes opened, time after time, to a larger world.
As children we step outside the house for the first time, and encounter a whole new world. Later we enter school, and we learn again that there are worlds unknown.
People my age (56, in English years) tell me time and again that everything is getting worse, government (US) is broken, the economy is failing, etc. I contend that as events occur, we learn to see the implications clearer, we understand more of the interlocking dependencies of our economy, and the petty nature of those in government strikes closer to home. Things may indeed be getting worse. But I think those of us that persist have our eyes opened, again, and we just understand more about how fragile life truly is.
And I think that is the explanation for the ‘gift’ of an illness. One passes through doors, experiences hospital and government procedures, that are new experiences. And our understanding grows of another region in the realms-we-don’t-know-yet. As you say, we may be thankful for the understanding and the growth, but there are other paths for path-seekers. It is nothing to be grateful for nor proud of that we learned about the lake by falling through the ice.
I envy the people that count on waking alert and functional each morning.
I think people do their whole “best thing that ever happened to me” routine because if they didn’t they’d have to admit that sometimes rotten stuff just happens to people who don’t really deserve it. I also think that instead of something in the circumstances, people should see something in people, in their strength when faced with just plain rottenness. I’ll be honest, I also really really love Buffy (partly because Spike is so hot) but partly because Buffy is fighting a battle she knows she can’t win, but she gets up every day and fights it anyway. And I love Willow to death, and bawled my eyes out at the end of the sixth season.
If I ever end up going to the doctor and checking out my depression and sleeping trouble and headaches and occasional bouts of just plain craziness, and find out that I have Serotonin Deficit Disorder–well, considering what it can do to me I’m not going to call it some kind of blessing in disguise, just because it makes it impossible for me not to write sometimes.
And, kind of DUH stuff on TV and movies affects people. And I’m only twenty years old, so I can’t be accused of being old and set in my ways, which, I personally think that if old, unconnected people are seeing how terrible TV is and the young and hip are not, their loss. (The young and hip, I mean.) My dad is the kindest, most decent, most gentle man I know, really, like a benevolent character from a Dickens novel, and he’s dead set against TV and most modern movies.
And the way models and celebrities are all a size zero or two would have pushed me right into anorexia if my boyfriend wasn’t so caring and complimentary and all around sweet.
Um, I’m done ranting now. Sorry it’s so long, but I kind of feel like other people who recognize this unhealthy culture ought to get lots and lots of support. Plus–huge Buffy fan. Instant connection.
Oh, kiddo, please forgive me taking advantage and I promise not to rag you about this, but chances are that if you did something about your diet, SOME of the depression and sleeping trouble and craziness would be at very least alleviated. I’ll just say very quickly . . . ever tried going to a homeopath? That whole-person thing about homeopathy–chances are also that it’s all CONNECTED, because everything IS, and if one thing eased up or came forward or dropped back everything would end up getting a bit of a reshuffle. . . .
Anyway I’m really sorry you’ve got all this garbage when you’re only twenty. That seriously sucks.
And I SO agree about the size zeroes. This is actually one of my personal particular rants because, in this society, thin people have an authority that unthin people automatically don’t, because society is stupid. And I as a thin person (although I’m a lot of numbers more than zero) say YOU DON’T HAVE TO BE THIN. Victoria Beckham looks like HELL.
Plus–huge Buffy fan. Instant connection
******* You betcha. :)
partly because Buffy is fighting a battle she knows she can’t win, but she gets up every day and fights it anyway
********* YES.
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I did change my life a lot after I was diagnosed with Type 2 diabetes; I am much healthier now than I was 8 years ago. Do I wish I had never got it? Damn straight! It’s frelling expensive! Anyone with chronic conditions knows what I mean. All those damned pills, and shots, and quarterly blood tests, etc. etc. etc. Am I mad at myself for not taking better care of myself? Yeah. So am I doing my best to make sure my sons don’t get it? Oh yes. My entire family follows my diet. It helps me stick with it, but I’m hoping it will help to keep my husband and sons healthy and diabetes-free. But is it the best thing that ever happened to me? You’ve got to be kidding!
Robin, I hope that ME will start to leave you alone. It’s gone on this time for much too long, it doesn’t seem right. Candles, prayers, hugs, chocolates – all you need coming from Florida …
Yes, it HAS been going on too long this time–that’s the problem. As I just said to Diane from MN, I’m used to the occasional bad day. I’m NOT used to it grinding on and on like this. I’m not used to having to track my spoons this closely, you know? And to tie up the hellhound walking ones IMMEDIATELY to make sure they don’t get spent elsewhere.
For the rest–yes. You sound JUST like everyone I know who has a chronic something. We’re much healthier. And boy, are we pissed off. :)
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Given the subject, this is probably an idiotic question, but hey…do you still attend SF conventions at all across the pond? Such as WFC in Calgary?
Very rarely. At the moment not at all, till I get the hellhounds (a) stabilised and (b) find someone who can mind them while I’m gone. Their first year–before I started this blog–I had several Interesting Adventures about (b).
Also, I only go if *all* expenses are paid. All. No quibbles.
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Sympathies over your encounter with the toxic fume machines, and I think you are quite right to be concerned about the effects of winddrift from farm spray. When we moved here we were looking for small acreage, which meant not living in town, and when we didn’t find anything and decided we’d need to buy a lot and build, I ruled out anything that bordered on cropland that might be sprayed. If I am driving past a field that’s being treated with anything, I shut the outside air vents. I’ll use Roundup–we have poison ivy, must do something–but I only get the pre-mixed stuff and it NEVER goes inside the fence, regardless of how harmless the folks at the University say it is. People are way too relaxed about these chemicals. (You can make a weed-killer out of vinegar and concentrated orange oil; I experimented with it at the end of last season and think it might be effective, but not against poison ivy. Shucks.)
Not at all by the way, Dragonhaven arrived this week. I sent you an e-mail but in case it didn’t get through, many thanks. And if it did get through, thanks again.
Hope you soon hit on the right de-stressing formula to get out from under the ME. Good thoughts will be going in your direction.
Yes, mine is ground elder, rathe rthan poison ivy, which at least doesn’t make you miserable beyond the effect it has on your garden! Orange oil and vinegar? How about THAT recipe? :) Will it kill dandelions, enchanters’ nightshade (pity about the *name* . . . ), cooch grass? –all of which are no doubt called something else in America. Well, not dandelions. :) I entirely agree about Round Up. I didn’t let the hellhounds in the garden at Third House for something like a week and a heavy rain after we’d done the ground elder–and are about to do another patch.
The ME is, unfortunately, no worse than it sometimes is; it’s just that it’s stayed at this wrong end of the standard range too long. I’m used to the occasional bad day. I’m NOT used to several bad weeks in a row.
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No, no, no, Robin, you EAT the dandelions. Young dandelion greens are great in salads, older ones you boil in a small amount of water (reserve the water cool and drink: natural bitters that help digestion, natural diuretic that helps detox the kidneys and very high in iron) then you serve these as greens with a light vinaigrette and a very small smattering of salt. You can also use it with spinach and other mixed greens to make a pie. This is one of the natural wonder foods and a national passtime in Greece (collecting them in the wilderness).
Yes, all right, I have eaten dandelion leaves. But you can’t actually harvest enough of the little rotters in a small garden to make putting up with their invasive habits worth it.
I hope that the green things growing in your garden, the affection of your human and canine family, and the sunshine (at last!!) are all positives that you can lean on a little – even though they don’t take away the grey hell of ME.
If you feel like a little clicking, you might try a bit of amiably frustrating nettishness for a few minutes: http://www.bassfiles.net/parachute.swf ?
Oh, LOL, LOL, ow, ow, I haven’t had one of your idiot–I mean highly amusing–net games in a LONG time!!! My only complaint is that I think you should get a bigger show if you actually get him ON the landing pad!!
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OOh fun. Much better than writing papers…
But I agree. What is all this ‘raising arms under parachute’ business? WHERE ARE THE FIREWORKS and the cheering crowds of amazed spectators and so on– Where’s my CAKE? I got it 6 times out of 20 tries– 2 the first time, and 4 the second time… a marked improvement, if you consider that it doubled. Maybe I’ll try it again…………..
:)
–Julia
You got him on the landing pad? Brava you! Took me 7 jumps to cotton on to the fact that you have to open the chute! Maybe I’d have done better if it weren’t 1:30 a.m.
“I think you should get a bigger show if you actually get him ON the landing pad!!”
Quite so. Something should go WHOOSH!, or there should be fireworks, or similar. :) We’ll just have to be satisfied with an inner glow of triumph for the moment with this one, I suppose. I rather like games where winning means something goes SPLAT!
Will have a look through my back list of circulations, though those I’ve seen recently have been pretty feeble in their programming so I’ve not bothered with sharing.
I’ll have to track down someone who can work with Flash and give them a hellhound theme to work on. :)
I have to say I admire you for all of *your* bucking. ME doesn’t sound like anything I’d like to have and I imagine dealing with it on a regular basis isn’t fun.
that said, “young” as I am :), I dislike the TV thing too. I used to watch a lot of it (too much, I think) and when I didn’t have time for it anymore because I was doing other things, I felt much better about myself and my life. I don’t have one now, and my roommate and I just watch what we want on her computer, nothing more. it does make you sort of detached from the culture, but I don’t miss it, and like you it made me realize just how much crap is out there.
and one last thing – your books are some of the things that help me “buck” it, so to speak :) so thanks.
Thank *you,* very much!
It’s tricky about crap, and about society. I don’t miss TV, but I know I’m *also* missing good stuff–maybe even something I’d like as well as I liked BUFFY (although that’s hard to imagine . . . :)). And it’s too easy, if you’re not careful, although this may be something that creeps up on you with age and you don’t need to be worrying about it yet, to start assuming Your Way Is Better. And having downtime trash in common is another way of connecting to your friend/neighbour, just like having the same high lofty tastes is. I’m actually a whole lot nastier an elitist about books, I can’t imagine why . . . :)
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Has anyone tried to give you a copy of The Secret yet, or is it not a huge deal in England? If they do, I suggest you kill the giver. The basic premise (sorry if you already know this) is that bad things in our lives are caused by our own negative thinking. What a marvellous way to blame the victim. Do go tell it to people in Darfur or Holocaust surviviors or something.
Sorry.
I agree about violence and sex and the continuing search for More and Bigger and Faster. I personally (and hazily) connect the media overstimulation and our idiotic societal belief that the very most important thing to do is to be constantly paying attention to as many things as possible, so as to do as few of them well as possible. Let’s drive our cars while eating lunch, messaging our fifty closest friends, and watching tv, so that when we crash into that SUV we’ll have “Spent time doing useless things, but boy did I do a lot of them at the same time!” on our gravestones. And then twenty people nearby will record the accident for Youtube.
Oh, dear, another rant.
I definitely want to try to restrict total tv-and-videogames immersion for my kids, but unfortunately all the men I know whose parents tried to keep them from playing violent games or owning toy guns (when they were small. The men, not their parents.) have grown up to be heavily involved in various martial arts and own large collections of sharp things. I think perhaps it’s futile to prevent little boys from hitting each other with stick swords. Especially since one of the protected-from-toy-guns little boys grew up to be my husband, and I’m sitting next to his Journal of Asian Martial Arts, tonfa, gi, and staff. I do think it’s perfectly possible (I hope) to prevent them playing games where you shoot zombies and watch their heads explode in hyperrealistic colour. At least until teenagerhood.
:sends virtual chocolate through cd drive. And brownies:
Oh, my, more stuff I want to spend too much time answering. I don’t know THe SECRET specifically but I know plenty of the same rubbish. “You have cancer because YOU THOUGHT BAD THOUGHTS!!” Now isn’t *that* both helpful and kind. I can do a really big rant on this stuff. . . .
And yes about more and bigger and faster. . . .
And there doesn’t seem to be anything you can do about testosterone supremacy. Except maybe hope they *do* go in for something like martial arts, where it gets channelled, and if you’re careful about your martial art, it has other stuff besides bash, crash and blood.
The thing that perhaps most preoccupies me about Our Modern F*cked Society is *how* you enable people to find the POSITIVE things that they WILL love so much and be so fascinated by that they WILL pour a significant amount of positive energy into learning and doing. This may be my Pollyanna streak but I believe that everybody has bell ringing, gardening, piano-playing, horse-riding, hellhound-involving and story-telling things just waiting in their genes to be discovered and exploited. It’s FINDING them.
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Oh I so agree with you. I have bad ankles. I have hyper-flexible joints and have had a couple of accidents when young so they tend to get twisted a lot. Two years ago last April I tore two ligaments in my right ankle. Running to catch a cab, my foot went into a pothole, wedged, I fell sideways, while foot stayed upright. Upshot two of the three side ligaments were entirely torn. I don’t want to tell you how many of my “elevated” “alternatively-holy” friends felt they had to tell me that this was because “I didn’t want to go forward with my life”! What twits! It was a pothole! Athens is full of them. The pavements are awful and the roads are worse. I walk A LOT. Yes, I will fall. Statistically if you have a weak point that is what you will injure. But they look at you gravely, as if you were slightly pathetic and shake their heads, at you. It makes me very mad as well!
I believe most strongly in putting positive things in my life: reading books and poetry, going for walks, swimming all summer long, having good times with my friends. helping others when I can, going dancing and moving my body, doing creative things and using my brain. I agree with you. This is where your focus should be. Thanks for being a positive thing in my life.
THESE PEOPLE ARE NOT YOUR FRIENDS. Sorry. This kind of thing makes me *boiling* mad–the *last* thing you need when you’re sick and low is **someone trying to hand you this kind of hooey on a shovel** and make you feel WORSE.
(And thank *you.* :))
People should be taught the concept of pacing yourself. Of what’s a sustainable level of excellence-and-doing-stuff, and what is going to leave you (physiologically, mentally, emotionally) in the hole. If I work overtime for more than a day or so, I get sick.
Unfortunately, all-out effort is impressive and visually impactful and makes for great stories. Quiet prudence and caution and planning is about as interesting as watching paint dry, even if it works out infinitely better in the long run (for the individual, for the individual’s employer, for society as a whole.) Not to mention it sounds just like your parents ‘Don’t get tooo….fill-in-the-blank…dear”
So we need some cartoons where the hero is a chess player and achieves amazing results by Doing Very Little But Think, and the villains run around falling over their feet in a vigorous and unproductive way. T-shirts saying “Mycroft was much brighter than Sherlock”.
YAAAAY. I couldn’t agree more. It’s another one of those real world skills school does NOT teach you. Mycroft WAS brighter than Sherlock . . . but he was also boring.
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Sticking this here because why not, and it might help cheer you up just a tad. I finally (!!!!!) got my hands on a copy of Dragonhaven yesterday and gulped it down. Very lovely. Jake is a great character, as is Eleanor. And Martha. And you know, they’re really all great characters, even Eric, who it took me awhile to warm up to. So thank you.
Thank you! Cheeredness accomplished. :) If you’d warmed up to Eric too soon, I’d've done it wrong! :)
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You’re quite welcome. I am also looking forward to Chalice because I have this weird thing about bees. I don’t know where it came from, but it’s been around awhile and I don’t think it’s leaving.
And now I really will stop leaving comments all over the place and go read the Georgette Heyer that’s calling my name.
“There are no upsides to having a stupid illness; you’d much rather be well, and deal with what needs to be dealt with.”
*standing ovation*
I’ve dealt with my own autoimmune crap (ITP which is a wimp of autoimmunity–it’s fairly easy to knock it into remission), and while I’ve pulled good out of it (easier since remission) it still SUCKS because it forced me to grow up in a way I didn’t want to. My platelet count is low right now and I feel like crap and it’s very hard to explain to people that no, I don’t want to hang out for hours because I have LOW ENERGY.
So yes, your pain is felt.
it still SUCKS because it forced me to grow up in a way I didn’t want to.
********* YES. Unfortunately I understand this one. I’ve always been someone who throws energy at problems, like mud at a wall, waiting for something to stick. I don’t WANT to take responsibility!!!!
My platelet count is low right now and I feel like crap and it’s very hard to explain to people that no, I don’t want to hang out for hours because I have LOW ENERGY.
So yes, your pain is felt.
********* Yes. I’m very sorry to hear it, if you follow me.
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I agree about all-out being more visually appealing, except… there’s one series I endlessly re-read (even though the writing is kind of awful) because the main characters all do useful things, which are described in excruciating detail. They do woodworking and blacksmithing and stonework, and I love it.
I thought liking that proved I have some kind of defect. It should be boring. The food is also great in that series. That would be another plus. I still mean to try to make up reciipes for most of Sunshine’s desserts.
There are so many very interesting things to do in the world- bell-ringing and baking and hellhound or hellcat raising and tai chi and all sorts of different dance and learning to do your own plumbing or or do stained glass or writing. It seems a great pity not to be interested, doesn’t it? When a friend of mine was in undergrad he was phoned by a cable company offering some GREAT DEAL on cable, and he said,
“We don’t have a tv”
There was a long pause.
“What do you DO if you don’t have a tv?”
“Well, we read, you know. Or have conversations. Or play music.”
CLICK.
You are entirely right. A chronic illness may lead to choices that are good, but it is not a good thing in itself.
I have a quiet life with my computer and my needlework and my writing – and my husband and grown kids. It suits me. Most days I see very little of people.
I went to a conference. It is one of only three or four I do in a *year*. Two days on the road, three days of conference, two days drive home. Great wopping gobs of interaction and then quiet again. When it goes well it nourishes the social self for ages.
This time it didn’t go well. I’ve been having trouble balancing the diabetes. Enough insulin to keep the blood sugar numbers down makes me gain weight. The solution, for now anyway – this thing *changes* constantly – is not eating much and nearly none of it carbs. So of course I went and surrounded myself with people happily eating all the stuff I can’t eat *constantly*.
Now I *have* gotten to the point where I don’t eat all those lovely carbs, but it seems to be part of the disease that I do crave them. So by the third day I was looking at good friends and announcing “You have a working pancreas. I hate you!” Bless Cara, she took it well.
But, somebody that last day was wearing perfume and my allergies took over. I gave my presentation in a sinus pain haze. By the time I made it home I was seriously sick with both infected sinuses and lungs. Which means the cost of the three days is not just the four days on the road, but five days of collapse and antibiotics as well.
It costs too much. It really does. I don’t want to do the intense people thing all the time. But it shouldn’t cost this much to have the occasional bit of professional time and see friends and colleagues. Three days of payment for every day out is not acceptable. Not that I get to make that stick. I either pay or I don’t do – and I must emerge now and then or things I need to do don’t get done.
But there are people who can breathe in crowded rooms and eat normal things like bagels and bread. Occasionally I hate them. This is not good for my soul.
Unfortunately I understand what you’re talking about only too well. Yes–the compleat hermit thing is not a good idea–but the payment for almost anything else is gratuitously severe. And it is VERY HARD watching other people easily, carelessly, cheerfully doing/eating things that are forbidden to you.
(And please . . . use a user name. :))
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Robin, I hear you. 7 years with CFS, and counting. And even though, overall, I’m on the mend, I still have relapses — usually when I’ve forgotten, or managed to kid myself, that I’m All Okay Now.
Sigh.
I’ve only just found your blog, but I’m going to read through it now. It’s always so wonderful to learn you’re not alone — and share the impact of this crappy condition with another writer. Because the effect on the brain can be so scary, and that’s where we live.
Because the effect on the brain can be so scary, and that’s where we live.
********** ** Yes.** Memory? What(‘s) memory? I was *mostly* better for a while–years–and now I’m . . . not. Which is also *very* discouraging.
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Thank you for sharing about this. I don’t know whether to hug you because I’ve just discovered one of my favourite authors has the same awful vampirical illness I keep telling my doctors I have, or whether I want to stomp my foot petulantly because even with this illness you still manage to send out fabulous books and so there goes my last excuse for not writing more.
Fabulous books. Really. I recently passed Beauty on to my young daughter and it was such a delight, knowing she would grow up with the same enchantment as this book put upon me.
I wish you well.