splodgenoodles: (Default)
An hour or so ago I wished I was good at crying, unfortunately I'm not.

Instead I was twitchy and wanting to throw a tantrum. It took me a while to twig, but of course I'm off to see the wizard tomorrow (actually, the Inflammatory Bowel Disease research unit). Like it or lump it I will be upset if they send me away with nothing. I want to get well. I want my life to change. And it's unlikely to happen without medical help.

If they can't help me I am expecting them to be nice about it.

A barber's shop quartet as I leave:

Geez bummer, sucks to be yooouuuu
Geez bummer, sucks to be yoouuu


is kind of what I'm expecting.

This has now become an earworm and I've now put in a load of laundry, stacked the dishwasher and started ploughing through my papers with this going through my head.

Usually when I'm being productive round the house it's the "Life. Be In It." theme from the 1970s and 80s (it was a public health campaign promoting things like kite flying and bike riding and watching less telly, the song was great), or the Indiana Jones theme for when I'm really flying. But I'm afraid this is the best I can do right now.


~~~

Of course it's cause for celebration that I _mostly_ find people are nice about it all these days. Mind you, 10B will have my back - people are rarely mean when you've got a supportive husband next to you. (They can still get things wrong, but they watch their words more carefully and are disinclined to try and 'pull rank' on you).

~~~

Further lines for the above ditty would be most acceptable.
splodgenoodles: (Default)
An hour or so ago I wished I was good at crying, unfortunately I'm not.

Instead I was twitchy and wanting to throw a tantrum. It took me a while to twig, but of course I'm off to see the wizard tomorrow (actually, the Inflammatory Bowel Disease research unit). Like it or lump it I will be upset if they send me away with nothing. I want to get well. I want my life to change. And it's unlikely to happen without medical help.

If they can't help me I am expecting them to be nice about it.

A barber's shop quartet as I leave:

Geez bummer, sucks to be yooouuuu
Geez bummer, sucks to be yoouuu


is kind of what I'm expecting.

This has now become an earworm and I've now put in a load of laundry, stacked the dishwasher and started ploughing through my papers with this going through my head.

Usually when I'm being productive round the house it's the "Life. Be In It." theme from the 1970s and 80s (it was a public health campaign promoting things like kite flying and bike riding and watching less telly, the song was great), or the Indiana Jones theme for when I'm really flying. But I'm afraid this is the best I can do right now.


~~~

Of course it's cause for celebration that I _mostly_ find people are nice about it all these days. Mind you, 10B will have my back - people are rarely mean when you've got a supportive husband next to you. (They can still get things wrong, but they watch their words more carefully and are disinclined to try and 'pull rank' on you).

~~~

Further lines for the above ditty would be most acceptable.
splodgenoodles: (Default)
This week I have two trips out that must be made.

Although I am feeling much better than I have in recent times (touchwood and sssshhhh....because it might hear me), I resent medical appointments. Fair enough, I guess - I'd rather be doing things that are fun and/or interesting, but I don't yet feel confident to book in too many of those.

If I ever recover from this disease, what I really want to do is have a holiday. People talk about wanting to return to the workforce, be productive, be a good and valued person and I want to do all those things (why the hell do you think I've become so obsessive about knitting and in particular, finishing every project I start), and fair enough for most of us that's a non-negotiable wish simply because otherwise we are at or below the poverty line, but what people don't get when they are making moral judgements about sick people is this:

We don't get holidays.

We don't get weekends.

We don't get the evenings off.

We don't even get toilet breaks.

Being in the "sick role" might mean that society excuses you from certain obligations (well, sometimes) but it puts you under certain other obligations if you are to meet with any kind of approval. And one of those obligations is to not admit that you really want a fucking holiday and that if you had a choice, you'd not be sick but nor would you be working 9-6, you'd be having a bloody rest from it all.

Me, I'd travel. No idea how far. I'd walk a lot. I'd just wander. It's not something I've been able to do for a mighty long time and I used to love just wandering about.

Sometimes I daydream about just wandering. Just walking down different streets and following my nose. And meeting people and chatting to strangers and seeing where it gets me.

Don't get me wrong, I do miss work. But mostly because sometimes I managed to have work where I was paid to do the above. Oh, and I miss peak hour. I really miss being part of the crowd of people racing from one platform to another to catch the connecting train. I don't miss the trip home of an evening, because I nearly always came home late so trains were infrequent and quiet and lacked the hum of life that they had in the mornings - it was a much more solitary affair.
splodgenoodles: (Default)
This week I have two trips out that must be made.

Although I am feeling much better than I have in recent times (touchwood and sssshhhh....because it might hear me), I resent medical appointments. Fair enough, I guess - I'd rather be doing things that are fun and/or interesting, but I don't yet feel confident to book in too many of those.

If I ever recover from this disease, what I really want to do is have a holiday. People talk about wanting to return to the workforce, be productive, be a good and valued person and I want to do all those things (why the hell do you think I've become so obsessive about knitting and in particular, finishing every project I start), and fair enough for most of us that's a non-negotiable wish simply because otherwise we are at or below the poverty line, but what people don't get when they are making moral judgements about sick people is this:

We don't get holidays.

We don't get weekends.

We don't get the evenings off.

We don't even get toilet breaks.

Being in the "sick role" might mean that society excuses you from certain obligations (well, sometimes) but it puts you under certain other obligations if you are to meet with any kind of approval. And one of those obligations is to not admit that you really want a fucking holiday and that if you had a choice, you'd not be sick but nor would you be working 9-6, you'd be having a bloody rest from it all.

Me, I'd travel. No idea how far. I'd walk a lot. I'd just wander. It's not something I've been able to do for a mighty long time and I used to love just wandering about.

Sometimes I daydream about just wandering. Just walking down different streets and following my nose. And meeting people and chatting to strangers and seeing where it gets me.

Don't get me wrong, I do miss work. But mostly because sometimes I managed to have work where I was paid to do the above. Oh, and I miss peak hour. I really miss being part of the crowd of people racing from one platform to another to catch the connecting train. I don't miss the trip home of an evening, because I nearly always came home late so trains were infrequent and quiet and lacked the hum of life that they had in the mornings - it was a much more solitary affair.
splodgenoodles: (Default)
The carer I got today was alright. I've met her before and I think we can work together okay.

As for the carer I had last week: my case manager is making a formal complaint. She's advised the agency that I don't wish to take the matter further but that she is concerned on my behalf and on behalf of any other clients who may be effected.

So that's that.
splodgenoodles: (Default)
The carer I got today was alright. I've met her before and I think we can work together okay.

As for the carer I had last week: my case manager is making a formal complaint. She's advised the agency that I don't wish to take the matter further but that she is concerned on my behalf and on behalf of any other clients who may be effected.

So that's that.
splodgenoodles: (Default)
Just reading a comment elsewhere on LJ that reminds me of that ornery old problem about invisible disabilities. It was a passing comment about people disrespecting the disability parking zones. The problem being that having a permit is something between you, your doctor and your local authorities - whether or not you look well to a random stranger has no bearing on the matter.

Having an invisible disability, and knowing lots of other people who do, and knowing some of these other people have been abused by random strangers for having and using their permits(and waiting for the day when it happens to me because I've got my speil all ready and just hope when it happens I've got the wherewithall to use it), it's a matter quite close to my heart.

Essentially, you can't assume anything about a person's health and/or capacity based on how they look to you. And you don't have a right to demand that information.

I'm never sure whether to weigh in and speak up on that one, given it was tangential to the topic under discussion.

Well. At least anyone who reads this post knows how it is.
splodgenoodles: (Default)
Just reading a comment elsewhere on LJ that reminds me of that ornery old problem about invisible disabilities. It was a passing comment about people disrespecting the disability parking zones. The problem being that having a permit is something between you, your doctor and your local authorities - whether or not you look well to a random stranger has no bearing on the matter.

Having an invisible disability, and knowing lots of other people who do, and knowing some of these other people have been abused by random strangers for having and using their permits(and waiting for the day when it happens to me because I've got my speil all ready and just hope when it happens I've got the wherewithall to use it), it's a matter quite close to my heart.

Essentially, you can't assume anything about a person's health and/or capacity based on how they look to you. And you don't have a right to demand that information.

I'm never sure whether to weigh in and speak up on that one, given it was tangential to the topic under discussion.

Well. At least anyone who reads this post knows how it is.
splodgenoodles: (Default)
On my fairly deliberate avoidance of people who have colds someone recently said:

"In some places, everyone just accepts that you get sick round about now, with the change of seasons.

I don't see why you should be any different."


I tend to assume that when one person complains or comments about something, there's another ten (at least) who agree but choose to keep their mouths shut.

So. This is for those ten (at least) people.

1. Because I am different. My body works differently. I am immuno-suppressed. The medications for Crohn's Disease are *all* immunosuppressants. ME/CFS - the disease that actually cripples me - appears to be one of weird auto-immunity as well. Whenever their are public health warnings addressed to the aged, parents, and people with medical conditions - that last one is me.


2. I get the ordinary old cold that everyone else gets, magnified several times. You'll be better within a week to ten days, back to normal within a fortnight, three weeks if you're unlucky. I won't be. It's not just the change of seasons for me, it's the whole fucking season.

3. Plus the secondary infections.

4. This whole damn ME/CFS nightmare appears to have been triggered by a cold. Not influenza, not pneumonia, nothing exotic. A cold. So whenever I get one, I really have no idea what will be left of me when it's over. I say it just takes me longer to get back to my normal (if rather depressingly low) baseline, but this is me putting on a brave face (mostly for the comfort of others). I never know that I will actually get back to where I was. You can call this paranoia if you like, but given what life's been like this last (almost) ten years, I think it's quite justified.

5. There is a false egalitarianism going on with this attitude. As well as ignoring the fact of immuno-suppression, the idea that I'm no better or worse off than anyone else, just different ignores objective difference in capacity for action of any kind. Capacity for living normally. Capacity to excercise the same choices and fulfill the same obligations as my healthy peers. My capacity is somewhere down at sea level compared to most people.** This is objective fact. Therefore I have less room to move before I really do find myself drowning.

6. Missing out on one social occasion matters to me far more than it does to most people: I struggle to keep up at the best of times and in general I don't. In general, I'm isolated and as time passes, more so. Every little activity is important to me. I can't make up for it in a week, or two, or three. Time matters in the maintenance of a life, and it doesn't wait for us. Missing out on yet another several months of opportunities to communicate and interact with people - it matters. And it's a cumulative thing. As time goes on it matters more, not less.

7. Staring at the walls and feeling bloody sick for weeks on end doesn't become an okay way to live - just different - ever. The fact that the best I can hope for is to graduate from that to sitting around and feeling sick when I try and do anything remotely normal with my life doesn't make it okay. You might be willing to accept it as my lot in life, I'm not.

8. I'm sure there was more but I'm buggered.

In deference to LJs new emphasis on clean living, I didn't preface or conclude any of these points with "fuck you sideways with a pineapple". If you still need convincing, please insert this comment accordingly.


**Before anyone jumps in with irrelevant platitudes, I do not say this through lack of self esteem, I say this because it's objectively true. How well people use the capacity they've got is a different topic, not relevant here.
splodgenoodles: (Default)
On my fairly deliberate avoidance of people who have colds someone recently said:

"In some places, everyone just accepts that you get sick round about now, with the change of seasons.

I don't see why you should be any different."


I tend to assume that when one person complains or comments about something, there's another ten (at least) who agree but choose to keep their mouths shut.

So. This is for those ten (at least) people.

1. Because I am different. My body works differently. I am immuno-suppressed. The medications for Crohn's Disease are *all* immunosuppressants. ME/CFS - the disease that actually cripples me - appears to be one of weird auto-immunity as well. Whenever their are public health warnings addressed to the aged, parents, and people with medical conditions - that last one is me.


2. I get the ordinary old cold that everyone else gets, magnified several times. You'll be better within a week to ten days, back to normal within a fortnight, three weeks if you're unlucky. I won't be. It's not just the change of seasons for me, it's the whole fucking season.

3. Plus the secondary infections.

4. This whole damn ME/CFS nightmare appears to have been triggered by a cold. Not influenza, not pneumonia, nothing exotic. A cold. So whenever I get one, I really have no idea what will be left of me when it's over. I say it just takes me longer to get back to my normal (if rather depressingly low) baseline, but this is me putting on a brave face (mostly for the comfort of others). I never know that I will actually get back to where I was. You can call this paranoia if you like, but given what life's been like this last (almost) ten years, I think it's quite justified.

5. There is a false egalitarianism going on with this attitude. As well as ignoring the fact of immuno-suppression, the idea that I'm no better or worse off than anyone else, just different ignores objective difference in capacity for action of any kind. Capacity for living normally. Capacity to excercise the same choices and fulfill the same obligations as my healthy peers. My capacity is somewhere down at sea level compared to most people.** This is objective fact. Therefore I have less room to move before I really do find myself drowning.

6. Missing out on one social occasion matters to me far more than it does to most people: I struggle to keep up at the best of times and in general I don't. In general, I'm isolated and as time passes, more so. Every little activity is important to me. I can't make up for it in a week, or two, or three. Time matters in the maintenance of a life, and it doesn't wait for us. Missing out on yet another several months of opportunities to communicate and interact with people - it matters. And it's a cumulative thing. As time goes on it matters more, not less.

7. Staring at the walls and feeling bloody sick for weeks on end doesn't become an okay way to live - just different - ever. The fact that the best I can hope for is to graduate from that to sitting around and feeling sick when I try and do anything remotely normal with my life doesn't make it okay. You might be willing to accept it as my lot in life, I'm not.

8. I'm sure there was more but I'm buggered.

In deference to LJs new emphasis on clean living, I didn't preface or conclude any of these points with "fuck you sideways with a pineapple". If you still need convincing, please insert this comment accordingly.


**Before anyone jumps in with irrelevant platitudes, I do not say this through lack of self esteem, I say this because it's objectively true. How well people use the capacity they've got is a different topic, not relevant here.
splodgenoodles: (Penelope intro)
Friday last:

Went to dental appointment with carer and wheelchair. I used the chair because the distance was just a bit much, I was already pushing shit uphill by the time I got dressed.

Got to the office, and when I was called in I decide to walk the last ~6 metres because

a) I sort of almost figured I could without further damage (I was probably wrong, but I hate using a chair, I feel too conspicuous and looking weak) and

b) The way in is narrow and a fuss must be made to get me in there. Given what I just said about being borderline in terms of how comfy I was on two legs and how much I hate feeling conspicuous and looking weak, the fuss could have been just as draining.

As I go past the desk the receptionist laughs and says "it's a miracle!". I smile politely and say something like "yes indeed, a miracle".

Ho hum, social niceties.

As I'm sitting down, she comes in still smiling and says something like "don't mind me, still laughing! The way you got up and came in just reminded me of...do you know Little Britain?"

You think she stops there? It's like she has this shovel and she's just going to keep right on digging. )

Even though I'm happy with my response and don't believe she was ill intentioned, I wish I'd reacted differently. I wish when she'd asked me if I knew of Andy from Little Britain I'd said "no. Never heard of the show. Do tell." And gotten her to sketch out the entire character and why he was funny and exactly why I reminded her of him. I would have been terribly polite and interested. After about five questions she would have started squirming and making desperate attempts to climb out of the hole she was digging. It would have been uncomfortable for her, and I can't deny a bit of malice on my part, but I think sometimes people need motivation to change.
splodgenoodles: (Default)
Friday last:

Went to dental appointment with carer and wheelchair. I used the chair because the distance was just a bit much, I was already pushing shit uphill by the time I got dressed.

Got to the office, and when I was called in I decide to walk the last ~6 metres because

a) I sort of almost figured I could without further damage (I was probably wrong, but I hate using a chair, I feel too conspicuous and looking weak) and

b) The way in is narrow and a fuss must be made to get me in there. Given what I just said about being borderline in terms of how comfy I was on two legs and how much I hate feeling conspicuous and looking weak, the fuss could have been just as draining.

As I go past the desk the receptionist laughs and says "it's a miracle!". I smile politely and say something like "yes indeed, a miracle".

Ho hum, social niceties.

As I'm sitting down, she comes in still smiling and says something like "don't mind me, still laughing! The way you got up and came in just reminded me of...do you know Little Britain?"

You think she stops there? It's like she has this shovel and she's just going to keep right on digging. )

Even though I'm happy with my response and don't believe she was ill intentioned, I wish I'd reacted differently. I wish when she'd asked me I'd said "no. Never heard of it. Do tell." And gotten her to sketch out the entire character and why he was funny and exactly why I reminded her of him. I would have been terribly polite and interested. After about five questions she would have started squirming and making desperate attempts to climb out. It would have been uncomfortable for her, and I can't deny a bit of malice on my part, but I think sometimes people need motivation to change.
splodgenoodles: (hypocrates)
I haven't done a medical post for a while, but this is a bit of whinge. )

PS: It ain't all bad, it's just that this is the medical post and at the moment, the medical stuff's a bit blah. Tomorrow I fully intend to write about some of the good things that have been going on. (Oh, and one unpleasant thing too, but I promise I'll try and outweigh it with the positives, okay?)

PPS: And there will be photos.

And now, there shall be breakfast cereal and then bed.
splodgenoodles: (hypocrates)
I haven't done a medical post for a while, but this is a bit of whinge. )

PS: It ain't all bad, it's just that this is the medical post and at the moment, the medical stuff's a bit blah. Tomorrow I fully intend to write about some of the good things that have been going on. (Oh, and one unpleasant thing too, but I promise I'll try and outweigh it with the positives, okay?)

PPS: And there will be photos.

And now, there shall be breakfast cereal and then bed.
splodgenoodles: (Lady Penelope's does her thing)
Last week I sent a letter to my CFS doctor updating him on my progress. It was quite upbeat.

It bounced.

Twice.

I think the internet was trying to tell me something. I should know by now never to say things are getting better.


~~~

Probably going to be a few days before I get my thingyness** back.

In the meanwhile, fuck it. I'm going to lie around with a pillow on my head wishing to hell this stupid body of mine would let me drink or smoke or speed or trip or something. I need a holiday from this.




**Thingyness: fight, equilibrium, internal locus of control, sense of stability and equanimity and stuff.
splodgenoodles: (Lady Penelope's does her thing)
Last week I sent a letter to my CFS doctor updating him on my progress. It was quite upbeat.

It bounced.

Twice.

I think the internet was trying to tell me something. I should know by now never to say things are getting better.


~~~

Probably going to be a few days before I get my thingyness** back.

In the meanwhile, fuck it. I'm going to lie around with a pillow on my head wishing to hell this stupid body of mine would let me drink or smoke or speed or trip or something. I need a holiday from this.




**Thingyness: fight, equilibrium, internal locus of control, sense of stability and equanimity and stuff.
splodgenoodles: (hypocrates)
Today is a couch day. Getting out of bed was really hard and I'm not sure, but I'm a little worried that I'm having a bit of a health thing, and my GP seemed to think so too when we spoke last night.

I've spent most of the day waiting for doctors to phone me. I'm still waiting. I also updated my medications list and writing that 'Dear Nurses, please don't treat me like shit' letter which was not on Dave because last time it was done by some weird, archaic method involving "pen" and "paper". Still need to print them off. Am hoping this flurry of preparedness is entirely unnecessary.

(Gastic stuff, in case you were wondering.)

Hopefully easing but it's taking a toll on the rest of me. At worst, my gastro will want to have a proper look, not a procedure I find daunting in itself, but it's a lot of fuss and bother. Hopefully my body won't feel too bashed around for too long, if I'm really lucky they'll establish that I'm anemic. This would be good, because anemia is treatable whereas if it's just my regular CFS lack of stamina and overreaction to exertion and stress, I'm screwed.

Updating documents like that is kind of saddening. I imagine it's a bit like doing your will. None of us really like to think we're mortal, I certainly don't.

Addit.: The specialist did what specialists do best, which is be totally unfazed no matter what you tell them. No drama, just pathology vampires descending tomorrow and I will see him on Friday. So. I guess I am having a Health Thing, in that I feel crap and things do need to be looked at, but I can stay right here for now, which is all I want really.

~~~

On the plus side, 10B and Ro are preparing a base for a wood fired oven we're building in the back yard. When I say 'we' I mean The Usual Gang Of Suspects. Except me, really. I'll just lie around and say yay a lot.

~~~

We're not mental so stop saying that. ;)
splodgenoodles: (hypocrates)
Today is a couch day. Getting out of bed was really hard and I'm not sure, but I'm a little worried that I'm having a bit of a health thing, and my GP seemed to think so too when we spoke last night.

I've spent most of the day waiting for doctors to phone me. I'm still waiting. I also updated my medications list and writing that 'Dear Nurses, please don't treat me like shit' letter which was not on Dave because last time it was done by some weird, archaic method involving "pen" and "paper". Still need to print them off. Am hoping this flurry of preparedness is entirely unnecessary.

(Gastic stuff, in case you were wondering.)

Hopefully easing but it's taking a toll on the rest of me. At worst, my gastro will want to have a proper look, not a procedure I find daunting in itself, but it's a lot of fuss and bother. Hopefully my body won't feel too bashed around for too long, if I'm really lucky they'll establish that I'm anemic. This would be good, because anemia is treatable whereas if it's just my regular CFS lack of stamina and overreaction to exertion and stress, I'm screwed.

Updating documents like that is kind of saddening. I imagine it's a bit like doing your will. None of us really like to think we're mortal, I certainly don't.

Addit.: The specialist did what specialists do best, which is be totally unfazed no matter what you tell them. No drama, just pathology vampires descending tomorrow and I will see him on Friday. So. I guess I am having a Health Thing, in that I feel crap and things do need to be looked at, but I can stay right here for now, which is all I want really.

~~~

On the plus side, 10B and Ro are preparing a base for a wood fired oven we're building in the back yard. When I say 'we' I mean The Usual Gang Of Suspects. Except me, really. I'll just lie around and say yay a lot.

~~~

We're not mental so stop saying that. ;)

Blather.

Feb. 11th, 2007 02:52 pm
splodgenoodles: (Lock stock stoner eyes)
I'm in bed today, which is kind of annoying. Still, my icon is nicely appropriate.

And lots of bits of me are sore too. Moreso than usual. Bah humbug, I say! [livejournal.com profile] tenbears and the visiting [livejournal.com profile] beerwulf are off at General HQ doing stuff that is probably quite interesting, like building bread ovens and medieval-style kitchens, or maybe just patting the delightful if increasingly flatulent Binka.**

On the plus side, if you were going to have to lose a day tucked away indoors, today isn't a bad one to lose: it's dry and windy and warm outside. Precisely the sort of day I hate. There were a few rolls of thunder pre-dawn, but no rain and very little cloud about now. I'm so bored with sunny weather. Plain damn bored!

~~~

Today's crash results from the 'tired but wired' problem that comes with the ME/CFS. (And yes, I know I used the word 'tired' and if anyone else did I'd jump at them, but um, too bad).

What happens is I'm active, then I simply can't switch off. This become a critical problem if it's still happenning when I try to got to sleep. I'm not anxious, not even thinking too much or thinking about the day I've had. Just not able to go to sleep.

My legs and pelvis were *really* squirmy so I couldn't keep my legs still - Restless Legs Syndrome - but I was too buggered to be up and walking about. (I recently became aware of a conference that was called to discuss just how wrong it is that the medical industry is apparently 'creating' new illnesses, like Restless Legs Syndrome, and I can only assume the conference participants were an extraordinarily lucky bunch of smug healthy bastards who'd I'd happily swap places with anyday. Psycho-social bloody facism, that's what it is I tells ya! Gimme the medicalisation of the things that ail me, then give me the drugs invented to help, and let me get on with my life, please! It terrifies me to think the greatest contribution I make to the world will be being an example of something in someone's stupid unread sociology PhD.)

And my CPAP machine was driving me nuts. I started using it again three nights ago and surprisingly I had zero trouble getting used to it again. But last night, no go. Too sensitive to noise, that fruit peeler in the brain feeling. Ended up trying it with ear plugs at daybreak and dozed for a bit I think, but I didn't seem to lose awareness of it at any point.

I sometimes think that if I could just find a way to switch off after activity, I'd be fine. And I sometimes wonder if we shouldn't describe it as a condition of chronic over-exertion and over alertness. This leads to exhaustion and inability to function well, but does not actually stop, so you're still super alert and aware, but totally useless at the same time because your alertness is going in all the wrong directions and your body and brain is screaming for a break.

Just a thought.

~~~

Oh, I did get to introduce [livejournal.com profile] beerwulf to Lock, Stock And Two Smoking Barrels last night, always satisfying to do that because it's such a great film and it means that I get to sit through it once again. I think he was rather pleased too - last week I made him watch The Thunderbirds and while he's an insanely polite chap, I'm sure if I'd done that to him again there may have been words. Or more likely he would have excused himself to go to the loo, nipped out the back door and never returned.

~~~

Actually I've eased up on watching Thunderbirds this week and I'm back to trawling my way through Blake's 7, because I was sick of overdramatic acting and exaggerated facial expressions.

*coughs and moves on*

~~~

So since I'm just flopping about in bed today, there may be more posts later. Or not, since I'm really rather floppy and unable to get my shit together.


**Yes, totally unneccessary photo link.

This bed smells. Whuf.

Blather.

Feb. 11th, 2007 02:52 pm
splodgenoodles: (Lock stock stoner eyes)
I'm in bed today, which is kind of annoying. Still, my icon is nicely appropriate.

And lots of bits of me are sore too. Moreso than usual. Bah humbug, I say! [livejournal.com profile] tenbears and the visiting [livejournal.com profile] beerwulf are off at General HQ doing stuff that is probably quite interesting, like building bread ovens and medieval-style kitchens, or maybe just patting the delightful if increasingly flatulent Binka.**

On the plus side, if you were going to have to lose a day tucked away indoors, today isn't a bad one to lose: it's dry and windy and warm outside. Precisely the sort of day I hate. There were a few rolls of thunder pre-dawn, but no rain and very little cloud about now. I'm so bored with sunny weather. Plain damn bored!

~~~

Today's crash results from the 'tired but wired' problem that comes with the ME/CFS. (And yes, I know I used the word 'tired' and if anyone else did I'd jump at them, but um, too bad).

What happens is I'm active, then I simply can't switch off. This become a critical problem if it's still happenning when I try to got to sleep. I'm not anxious, not even thinking too much or thinking about the day I've had. Just not able to go to sleep.

My legs and pelvis were *really* squirmy so I couldn't keep my legs still - Restless Legs Syndrome - but I was too buggered to be up and walking about. (I recently became aware of a conference that was called to discuss just how wrong it is that the medical industry is apparently 'creating' new illnesses, like Restless Legs Syndrome, and I can only assume the conference participants were an extraordinarily lucky bunch of smug healthy bastards who'd I'd happily swap places with anyday. Psycho-social bloody facism, that's what it is I tells ya! Gimme the medicalisation of the things that ail me, then give me the drugs invented to help, and let me get on with my life, please! It terrifies me to think the greatest contribution I make to the world will be being an example of something in someone's stupid unread sociology PhD.)

And my CPAP machine was driving me nuts. I started using it again three nights ago and surprisingly I had zero trouble getting used to it again. But last night, no go. Too sensitive to noise, that fruit peeler in the brain feeling. Ended up trying it with ear plugs at daybreak and dozed for a bit I think, but I didn't seem to lose awareness of it at any point.

I sometimes think that if I could just find a way to switch off after activity, I'd be fine. And I sometimes wonder if we shouldn't describe it as a condition of chronic over-exertion and over alertness. This leads to exhaustion and inability to function well, but does not actually stop, so you're still super alert and aware, but totally useless at the same time because your alertness is going in all the wrong directions and your body and brain is screaming for a break.

Just a thought.

~~~

Oh, I did get to introduce [livejournal.com profile] beerwulf to Lock, Stock And Two Smoking Barrels last night, always satisfying to do that because it's such a great film and it means that I get to sit through it once again. I think he was rather pleased too - last week I made him watch The Thunderbirds and while he's an insanely polite chap, I'm sure if I'd done that to him again there may have been words. Or more likely he would have excused himself to go to the loo, nipped out the back door and never returned.

~~~

Actually I've eased up on watching Thunderbirds this week and I'm back to trawling my way through Blake's 7, because I was sick of overdramatic acting and exaggerated facial expressions.

*coughs and moves on*

~~~

So since I'm just flopping about in bed today, there may be more posts later. Or not, since I'm really rather floppy and unable to get my shit together.


**Yes, totally unneccessary photo link.

This bed smells. Whuf.

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