Mind
The mind is a funny thing.* The ME has been stalking me for about the last ten days, obscuring the horizon, louring in the corners, occasionally sticking out a claw and knocking me over. I’m back to spoon-counting.** During good spells I’m aware that I have fewer spoons than a lot of people and that all of mine are in circulation. Most people keep a spoon or two back–most people don’t need to use all of them. During not so good spells I get the labels*** out–you understand there are more labels than spoons–and the lists, and start juggling. Walking hellhounds is immutable. Most other things can be yanked around a little.
Earning a living is always first on the list. Then the negotiations start–the negotiations and the guessing. If I hadn’t gone bell ringing last night, would I not have had to cancel Connie this morning?† If it were as easy as x equals y–that one spoon were the same as another spoon–at least the choices would be clearer. But the spoons range from eighth-teaspoons to soup ladles. I wish I had more soup ladles. And looming over all is the malign whimsy of the ME. At any moment it can yawn and stretch and say, Okay, today you don’t have any spoons. Because I say so. –The one more or less rule that I do know–and even this is only about my ME, it doesn’t work for everyone–is that if you’ve got it, use it. Saving it doesn’t work. Accumulation does not happen. If I have a little flare of energy, turn the computer back on, get out into the garden, sit down at the piano: do something. During a bad spell, any capacity I don’t use will leak away again, leaving me feeling worse than I did before. The ME is like a lot of other bullies: if after teaching you to be scared chartreuse and drooling of it, it decides to make a generous gesture and you, completely nonplussed, and still green and dribbly, politely decline, it’s bloody furious and is meaner to you than ever. So in fact I was right to go bell ringing last night, and this morning was just . . . this morning. Sigh.
And then there’s knowing where the finish line is, where the edge of the map is, before you fall over the rim of your world. Ever taken a second helping of something†† and realised halfway or only a mouthful in that no, you didn’t want it? And what do you do now? Eat it anyway, because you took it, and feel sick? Don’t eat it and waste it? What if there are other people (or critters) involved? Are you going to be rude to your host? Are you going to tell the truth, and say that your stupid illness is flaring up? –Any sufferer of a stupid illness’s least favourite option. What if I’d got out there, tacked Connie up, hauled myself into the saddle, and realised I couldn’t go through with it? What if I’d got farther out there with her–and, just by the way, it was a gorgeous morning, the nicest bit of weather we’ve had in some days, a perfect morning for a hack–and she was in one of her tanking-off moods, and I couldn’t hold her? At least if you’re in the garden, you can lay your spade down and sit down beside it–putting your head between your knees optional. I’m careful about what I do in the garden during an ME guest appearance too: I try not to plant anything larger than a pansy, in case I have stop in the middle. A bare-root rose will soak happily in the water-butt for twenty four hours but I don’t recommend you leave it a lot longer than that.
But it’s not that simple either.††† Sunday service is what we ring bells for; ringing service is how we repay the church for the privilege of ringing their bells. I’ll drag myself to Sunday service ring if I can walk, and if I can walk, I can (probably) pull on a bell rope.‡ If there are more than six people at the tower, I may go home again–but there are very often not more than six people there–and once I’m there I won’t want to go home again. Therefore it is quite a good idea to take it easy Saturday night–make an effort to find that contentious line between using up what I have to use and getting dangerously tired tired–maybe even do something drastic like go to bed early.‡‡ Maybe then get up early enough to have swept the bottom of my skull for brain-fragments and tried to fluff them up into something usable by 8:45.
But the mind is a funny thing, which is where I came in. Here I am playing chicken with the ME, and losing–I always lose; it’s one of the rules–and wasn’t it only about a week ago that I was complaining‡‡‡ that my bell ringing had stalled, that if anything I was sliding backwards; that while These Things Happen, I didn’t have to like it, and I didn’t. I’ve had a remarkably good ringing week. I’m even learning things. In spite of the ME. It’s perverse. And I was going to tell you all about it tonight, only I seem to have got sidetracked§, and I probably shouldn’t have mentioned it Saturday night before Sunday service ring anyway. Stay tuned. But right now I’m going to try to go to bed early. . . .
* * *
* Sometimes ha ha. Sometimes not ha ha. There is nothing more not ha ha than Alzheimer’s. Two members of my immediate circle have it and . . . words fail, you know? All savage irony meant most wholeheartedly. Words just fail.
** Spoon-counting, for anyone new to the party who’s missed this: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
*** Speaking of labels, I was really looking forward to a dahlia called Black Narcissus this year. It’s a big black-red spiky thing, and entirely glorious. I planted it fairly far into the jungle that is the cottage’s back garden, tied it to a bamboo stake when it had enough stem to tie, and let it get on with things. Most of my other dahlias are out by now and I’ve been waiting for a sighting of Black Narcissus. Nothing. There is some unscheduled pale thing in about that position however. . . . This afternoon breasted the undergrowth and discovered . . . yes, a white single flowering over the label saying ‘Black Narcissus.’ I don’t even like singles. The National Dahlia Society is going to be receiving a little note from me shortly.
† Sob.
†† Carrots, water, lettuce, chocolate
††† It’s not simple. You’ve probably grasped this by now.
‡ Don’t tell anyone I said this, but you can actually kind of balance yourself against the pull of the rope, when you’re having trouble standing up, if it’s only a little trouble. It is not a very good idea, but I’ve done it on more than one Sunday, and I’m still here to not talk about it. It’s like walking is easier than standing still.
‡‡ What?
‡‡‡ No, no, no, not complaining. Musing wistfully.
§ Me? Sidetracked?
comments
Please join the discussion at Robin McKinley's Web Forum.
Every positive thought coming your way, that the ME will have started lifting in the morning to a considerable extent. What a total bummer it it. *Hug*
Whimper. Thank you. :)
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Oh Robin! I wish I could send you some spoons.
I wish it was that easy, and I know it’s not. ME/CFS is very, very unfriendly, and as you say, it’s one of those things that’s different for each person, which makes it that much harder to explain it to people . I have several friends who have it, and I know it’s different in its effects for each of them.
Sending you hugs, chocolate and a big boxful of virtual spoons. Hope tomorrow is a better day.
have several friends who have it, and I know it’s different in its effects for each of them.
******** Yes. This is how the medical profession got away with it for DECADES saying it didn’t exist and we were all imagining things. Grrrrrrrr. –It’s also why I think it’s a syndrome rather than a disease.
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::hug::
I mailed some alpacas to you to cheer you up.
*And may your spoons always be ladles*
I mailed some alpacas to you to cheer you up.
***** LOL! I can’t wait for THAT package! [Sound of mailperson toiling up hill with strangely bumpy parcel] It will be popular with hellhounds too!
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I could use some cheering up too. Could you send me an alpaca or two? =-)
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Me too! Y’know, b_twin_1, I think we’re actually close enough that you could post me an alpaca…
Chiquitar said: “I could use some cheering up too. Could you send me an alpaca or two? =-)”
LOL You need to get hold of an alpaca cookie cutter and make gingerbread alpacas :) At least they can’t spit on you then…. hehe
Comment by Ithilien
Me too! Y’know, b_twin_1, I think we’re actually close enough that you could post me an alpaca…
LOL You may as well visit first.
Oh, Robin. In plain speak, that sucks.
If an army of blog readers with flaming swords, pure hearts, and the best intentions could tackle the ME, you’d have done with your chronic enemy by tomorrow. How I wish that were possible. In the meantime, virtual everything you find comforting and helpful to you. And actual sympathy from someone who knows what it’s like to have chronic things people are pretty sure are only in your head. (“Snap out of it?! Gee, why didn’t *I* think of that?” *sigh*)
(”Snap out of it?! Gee, why didn’t *I* think of that?”
******** LOL! Yes, exactly! I’m not only neurotic ipso facto because I don’t have children, I’m also obviously pathologically self absorbed and have thereby given myself an imaginary disease!
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I’m lighting a candle and sending you hugs and ME-busting vibes over the ether. I hope that you sleep well, that the hellhound chorus remains mute and that you have multiple spoons in the morning.
and thank you for writing gems like this which strew your writing generously –
***** Maybe then get up early enough to have swept the bottom of my skull for brain-fragments and tried to fluff them up into something usable by 8:45.
Alzheimers. Fulminates. Deep sigh. Worked with people who suffered Alzheimers for 20 years – I can’t add anything.
***** Alzheimer’s. Two members of my immediate circle have it and . . . words fail, you know? All savage irony meant most wholeheartedly. Words just fail.
What AJLR said. Bummer. More hugs.
****** putting your head between your knees optional.
Candle flames held high. Yes. :) Thank you.
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I’m extending my sympathies to you for the ME. I have fibromyalgia and it’s different, but I am intimately familiar with the theory of counting spoons.
For me, the fact that I’ve been getting up at about 8 am every day, lately, is a small victory. I take them where I can find them. =)
*hugs to you and the hellhounds*
Fibro is a bear. No argument. Good luck. And hugs!
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Oh, ME, boo! Thinking VERY GOOD thoughts your way.
Sends more positive thoughts and hugs your way.
*Hugs and chocolate and candles*
Thank you for reposting the spoon link, too. I was looking and looking and looking for it… in the wrong journal. (A friend with fibromyalgia.)
Fibro may be even a bigger b*st*rd then ME–I tend to think of it as ME with more pain. ME can be achy as hell but I anyway don’t have the kind of pain people I knwo with fibro do. Good luck to your friend.
If you lose the link again, it’s in ‘about’ under ME. You might remember to look for it there next time! :)
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Robin wrote: “Fibro may be even a bigger b*st*rd then ME–I tend to think of it as ME with more pain. ME can be achy as hell but I anyway don’t have the kind of pain people I knwo with fibro do. Good luck to your friend. ”
The real thing with fibro that bugs the hell out of me is that it sets off other conditions. Like, when I get a cold, I don’t feel like I have a cold; I feel like I have the flu. Sinus infections knock me for a loop. The actual flu or anything with a fever or my recent bout this summer with bacterial gastroenteritis (curses on ye, E. coli) are all even worse…
I was diagnosed with arthritis this past December, and they had to give me a couple of weeks of steroids to kick it into remission, because the fibro had aggravated it so badly.
And I have a *mild* case. I get flares, but I’m pretty good most days. Pretty good being that I can get up and I can get dressed and get real work done. It’s about knowing your limits and not pushing them, and sometimes, you still push them and then you’re screwed for the next few days.
I’ve seen what it does to my mother, who has a much more moderate case of the disease, and it’s not fun.
I’m 27–I don’t deserve to have a chronic illness, but a lot of people don’t deserve to have the things they’re stuck with. I think the only way to deal with it is to just live life. One of the most important things I’m learning (and it is a learning process, always) is that I am not always a patient. Even with the pain, I am much more than my disease.
Or so my therapist tells me. =)
Yes, well, that’s exactly like ME–I think all the auto immune things are like this–you get an ‘acute’ like a head cold or flu and it brings the auto-immune back. As soon as I go down with something I’m already thinking, **ratbags**, next it’s the ME. But yes, all you can do is keep going. And maybe make plans for your next life. :) And, glory, I have a VERY mild case, as these things go. That doesn’t stop me COMPLAAAAAAINING . . .
Sparkly purple healing vibes and hugs to you, and Mr Bolty to blast the ME far, far away.
Seriously, I hope it starts lifting ASAP. I can’t imagine how frustrated you must be. {{{{{Robin}}}}}
Oooh! sparkly purple! :)
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Ugh. You have all my sympathies. I’m only sleep deprived, and all I did was sit in a deathly dull CPR class all day and I’m exhausted. To feel that way all the time must suck.
Well, I *don’t* feel that way all the time, thank the gods, but some people with ME/CFS/fibromyalgia/various other mysterious autoimmune things do, and I think they’re among the bravest people on the planet.
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I wish you some real, refreshing sleep tonight. Ditto to the first comment posted, including *Hugs*
thank you!
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My sympathies. My problem seems to be that when I feel good, I do too much, and wipe myself out for days at a time. I’m getting good at stopping stuff when I start getting tired…but it turns out even waiting that long is too late. I’m quite puzzled as to how I’m supposed to even live when I have no real indications of what I can and can’t do on a daily basis.
At any rate, I do relate very much to this post. Stupid limited spoons!
My problem seems to be that when I feel good, I do too much, and wipe myself out for days at a time. I’m getting good at stopping stuff when I start getting tired…but it turns out even waiting that long is too late. I’m quite puzzled as to how I’m supposed to even live when I have no real indications of what I can and can’t do on a daily basis.
******** YES!!!! Granted I’m always pushing it, but sometimes I can push it and sometimes I can’t, and there’s almost never any WARNING. And sometimes ‘pushing it’ means getting out of bed and getting dressed. Those are the days that hellhounds get a lot of time racing around Third House’s garden while I prop myself on the step and glaze out.
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Oh, I hear you. The getting dressed thing hasn’t been happening a whole lot lately. Pregnancy plus fibro are not a good mixture. Feeding the kid and the birds (husband does the cat care) takes a higher priority over clothing. Pajamas are more comfortable anyway. I’m just thankful that my house and yard are set up in such a way that the neighbors can’t see me wandering around in the middle of the day in them.
Have you thought of using comfy day clothing for your pajamas? That’s what I do. I have half a dozen soft cotton jersey dresses that I wear to slop around in. I do look a little barefoot and country, but then, here, I’m an *American*, and we’re a casual people. :)
That’s an interesting idea that I’ll have to consider, though I might still come across as a total slob. I’m rather, ahem, well-endowed, and the thought of wearing a bra all the time does not appeal. And then if I don’t wear it all the time, I have to take the pajamas/outfit off to put it on, which just gets me into the whole might as well get dressed territory. Still, I’ll to consider it if I ever see anything that looks sufficiently comfy.
Yes, well endowed is not one of my afflictions. :) But i’ve seen very *gathered* things that might work?
I’m so sorry to hear that the ME is surging and hope that going to bed early shocks it into submission. (Shucks, go to bed early for TWO nights and make it think it’s got the wrong house! :) ) Good luck with the bell-ringing tomorrow (yes, it’s early for me too). May the bells ring in much-improved health.
I’m putting a couple of new puppy pictures online, post-cropping, so he’s currently a little conehead:
http://www.flickr.com/photos/diane_in_mn/
I discovered when I tested this link that WordPress disappears the comment if you go to another web page before you post. Surprise!
:: sends hugs and lights candles ::
(Shucks, go to bed early for TWO nights and make it think it’s got the wrong house! :)
******** LOL! It would probably work!!
How old is Pup now? That face is definitely a Dane face now.
I discovered when I tested this link that WordPress disappears the comment if you go to another web page before you post. Surprise!
********* Yes. I still get caught out by this occasionally.
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Lighting candles for you … and I hope they burn ME’s @ss while they’re at it!
*****If I hadn’t gone bell ringing last night, would I not have had to cancel Connie this morning?*****
Oooh. Ouch. That must have hurt.
Do you ever get into a position where you suddenly crash and can’t drive yourself home? I have to be careful about that with migraines. It would seem like it would be a serious possibility against which you would have to guard, and I’d think it would be a serious pain in the neck, to put it mildly.
Judith
Yes. Driving is one of the most serious issues about coping. Another piece of ‘luck’ is that I’ve pretty much always been able to pull it together if I HAVE to, but if the ME is bad and I have to do a lot of pulling-together I pay for it really, really badly afterward. When I first had it–during the 18 months I was flat out–driving made me hallucinate. That split second awareness you use without thinking about it, driving, was like walking across Niagara on piano wire. Peter was still driving then; he isn’t, any more. So maybe it’s a good thing we moved to town. And that I have hellhounds that keep me at home.
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I sympathize again. During my first major flare-up, when I was just figuring out there was something wrong and what it was, I got lost a block or two away from home. Now, I had lived there for some months, maybe even a year, and I got lost. Didn’t even recognize where I was even though it was my normal route home. It only lasted a few seconds to maybe a minute, but it was pretty scary.
Yes. I understand only too well. The dreaded brain drop out. I suspect nobody who’s never had one knows about them. It’s not the same thing as the clicheed ‘my mind went blank’. It doesn’t just go blank, it goes *away*.
I hope you feel better soon and both the weather and the ME take a turn for the better. I just have a cold and feel miserable. You have all my sympathy.
Head colds are the pits too. At least I can breathe. :)
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So much of this is so very familiar. I’m sorry. Thank you for the link to the spoon doc, Robin, I’d heard of it but not read it.
I always lose; it’s one of the rules–
:( It might not always be, you know. Rules can change over time. Hang tough; believe it or not, you ARE stronger than this thing. You’re bigger than it is, for one–and the fact you’ve got spoons at all to count proves it.
The ME is *not* bigger than I am, true. It’s a big ugly thing but it’s not the ONLY thing. I remind myself of this sometimes when standing up long enough to walk to the loo and have a pee seems almost too much of an effort. One piece of luck I do have is that the aetiology in my case is pretty g*dd*am obvious–I run too hard and give myself too little slack and something stepped in and said ‘enough already’. Lots of people have it and for them it’s like, *why*? What did I do wrong? I pretty much know what I did/do wrong. Perhaps I have ME instead of being dead, you know? Maybe it’s actually my friend . . . ugh . . .
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Perhaps I have ME instead of being dead, you know? Maybe it’s actually my friend . . . ugh . . .
Maybe not so much a friend. Maybe like that annoying person in your life who you hate it when they ring you up unexpectedly, or you bump into them out shopping and have to stand there talking to them–but one of the reasons you can’t stand them is because they insist on frankly telling you stuff you don’t want to hear, even though it’s true. This doesn’t make them your friend, but it does make them someone who serves a purpose in your life, albeit an unpleasant purpose.
This doesn’t mean, of course, that you might’n't look forward to eventually not NEEDING someone filling that purpose in your life, someday. :)
UGGGGGGGH.
I’ll be good! I’ll become fabulously self aware! I’ll do everything right! I’ll slow down (I *will*?) Really I will! Yes! :)
I’ll be good! I’ll become fabulously self aware! I’ll do everything right! I’ll slow down (I *will*?) Really I will! Yes! :)
All things are possible! :) Far fetched, sure, but possible….
All things are possible! The UK reissue of SUNSHINE is going to sell MORE THAN THREE COPIES!!!!!!
All things are possible! The UK reissue of SUNSHINE is going to sell MORE THAN THREE COPIES!!!!!!
Yes! And they won’t have to be sold to Australia to sell!!
I’m counting on Oz for AT LEAST THREE MORE!!!!!!
*Hugs*. Hope you feel a lot better very soon. Having been felled by a virus all week and only just up and running again today (skating, actually, not running, but same principle), I do sympathise!
**Ugh.** Hugs to you too–don’t overdo it too soon!!!!
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I hope Monday morning finds you feeling a bit better. Maybe you should install a hammock in your garden… (I have a theory that resting in a hammock hung in a garden or wild place is good for you, if not physically, then at least emotionally :) That, with a tall, cool drink (whatever kind), and a book, and you’ll be all set to weather feeling under the weather ;p
(supportive thoughts and good wishes)
Thank you! Enforced lying down does allow the guilty pleasure of rereading old favourites. :)
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“The ME has been stalking me for about the last ten days, obscuring the horizon, louring in the corners, occasionally sticking out a claw and knocking me over”
It’s the frustration of not being able to do things I love that gets to me. I’m fortunate in that, unlike many ME sufferers, I don’t have pain. But I’m limited in walking to about 200 yards even on good days and I have cognitive dysfunction and a malaise that I can only describe as an extreme “yuk” feeling though I’ve heard it said that it’s like having flu on top of a really bad hang-over (I wouldn’t know!). And all these fluctuate from day-to-day and sometimes hour-to-hour – you have my full sympathies, dealing with the hellhounds *and* ME.
Sending you virtual hugs.
Oh, glory, virtual hugs right back at ya. There has *got* to be an answer, you know? There’s too many of us that have it. I, being a fringey weirdo, think it has something to do with Modern Life: in my case the things I wonder most about include agrochemical wind drift (we live surrounded by farmland), petrol fumes, denaturing of the soil and therefore our food, whacked immune system from too many antibiotics at too young an age, mobile phone mast radiation, feel free to add to the list. . . .
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I’m so sorry the ME is flaring. Nasty little bastard. I’ve tried to think of it as a teaching thing, but then it flares up and I get cranky again. Maybe it has taught me something–well, I sure as hell have had to prioritize my life, that’s for sure.
Yeah, mine is flaring too. Summer is a bad time for me–I don’t know if it’s the heat or what, but I find myself getting weaker and weaker until I’m in bed. This time I hit the supplements hard, and two weeks later I think I detect betterness. Maybe just a squidge. At least I have a laptop I can take to bed with me.
I have fibro too, but it’s in remission. I worked for many years in a warm pool to make this happen.
There are still SO MANY doctors over here that don’t believe in CFS–makes me crazy sometimes. Well, most of the time. One doc said to me “Well, I really don’t believe in CFS,” and I said “Believe? I thought medicine was a science.” The only shot I ever got in and it was fun…
Feel better, please. Keeping you in my thoughts.
Well, the NHS officially believes in it but a lot of docs still don’t. Docs prefer to sneer than to admit they can’t cure something [sorry, my bad attitude is showing. Grrrrr]. I am on handfuls of supplements ALL THE TIME. I first started getting up off the sofa eight years ago when I started taking supplements. Maybe you should STAY on them–?
I’ve tried to think of it as a teaching thing, but then it flares up and I get cranky again
*********** YES. Good luck to you too.
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Bleah. That is no fun. I remember vividly the utter exhaustion, mental and physical, of the first couple of weeks after my daughter was born. I think that’s probably about as close as I can get to understanding what ME is like….. and lords and ladies do I have respect for you and your strength of spirit.
Good energy and mental hugs coming your way…. with chocolate chip cookies and a big dripping bouquet of sunshiney flowers….
*****(I’ve forgotten what your time schedule is. How’s the unpacking going? When does the puppy move to the top of the list?)*****
Well, we can’t unpack when we haven’t finished PACKING. First of three rooms to be painted is getting painted this coming Thursday. (We found an excellent painter who is, of course, in great demand; he’s squeezing in our jobs between other jobs.) Some window treatments necessary for privacy are forthcoming. Painting completion date is unknown. After that we can move in. Then we can think about unpacking. After that we can think about a puppy and/or a rescue Greyhound. :-)
Judith
Or one of each. **Definitely** the greyhound. Good luck. Updates please . . . :)
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I got a lot of spoons back by paying a little more attention to eating and sleeping as I settled into my twenties, but I’m currently auditioning to sing with a jazz band and it means I’m out until 2am on Friday nights, and I’m a 5:30am-waking-up-type-person in real life. So many of my Friday spoons, pretty much ALL of my Saturday spoons, and a few spoons from the rest of the week are used on Friday nights. All because inconsiderate people can’t be bothered to go out at a reasonable 4 or 5pm on Fridays, instead of this late night nonsense! =-) I’m trying various coping techniques and so far I haven’t come down with my usual sinus infection punishment for doing horrible things to my sleep schedule, but I’m only barely holding it together. I have no idea how I’ll cope if I actually get into the group! At least one can’t smoke in that bar, or I’d be second-handedly dying of smoke about now. Perhaps I will find a miracle combination of naps and food and things.
I hope your spoon stock comes back soon.
Oh, the trade offs game. I was well-trained in the trade offs game by my mother, who had an uncanny ability to find a sin responsible for every head cold, even over the phone. It took a therapist to get me to stop calling her as a confession every time I got sick so I could get the blame over with. Now I play the game by myself (it’s impossible not to) but I do it as gently as possible and don’t invite others! Sometimes, you can be perfect and still get sick. Sometimes, you can push it and you’re fine. It’s like trying to walk a line that’s alive and keeps wriggling out from under you.
It’s like trying to walk a line that’s alive and keeps wriggling out from under you.
******* That’s EXACTLY right, but if you can bear a little pot calling kettle black, you need to STOP playing the blaming game. Gently is still playing it. I should know. I sympathise about necessary trade-offs that **destroy** the frail structure you’ve made to keep your life moving.
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Offering as much good karma as I can spare. Okay, more. Have it all! There are few things worse than dealing with something as unpredictable as ME. My fervent hopes that it takes its leave post-haste.
*sends copious amounts of virtual chocolate*
I think good karma is one of those things that increases for being spent. If we toss it back and forth here for a while . . . :)
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hugs to you . i have fb and am 39. was diagnose at 30but it took going to 2 doctors and 2 year of tests before that. first doctor told me it was all in my mind and stressed out.she has no idea.i love your character hari-mad sol. she took my mind off the pain and made me smile.i don’t know what i would do without the relief reading brings me, i hope tomorrow bring you more spoons.
i hope tomorrow bring you more spoons.
****** And I hope the same to you. (Thank you!)
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