splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (angry moomintroll)
Damn but I am a SulkyNoodle today.

It's yum cha day.

And yesterday I was sitting round feeling really pleased about the fact that I was confident I would be at yum cha today. (I hope you can see the reason for being pleased about feeling confident). And to take it one step further before I tell you the rest of it (which you've probably already guessed), I was even thinking that this could be one of those days where maybe afterwards we could do something spontaneous like go for a little saunter through Chinatown and renew my quest for the honking great Chinese dictionary of my dreams.

*assumes you've guessed the blindingly obvious*

Still, at least it's not the ME so I needn't feel unconfident in that respect. I'm fending off a freaking migraine.

It's the second one in about 10 days, actually.

Given I've been mostly headache free this last year and entirely migraine free(thankyou metoprolol), this is quite odd. I'm blaming shoudler tension from too much knitting, although my left eye is a bit weird too, so if this continues I should probably see EyeGuy to check for episcleritis and stuff. Mind you, my prior experience of eye inflammation is that it's like your eyeball is giving birth to a set of skewers, so it's probably just good old fashioned headache.

And it's not that anything is so bad that I'm in a dark room with the lights out (obviously). In fact, in migraine terms it's probably a 3/10. But the nausea is bad and I strongly suspect that if anyone waves a stewed chicken foot at me I won't be a happy noodle at all.

So I'm drinking ginger tea and I've taken some panadeine and I'm aware that I shouldn't do anything to aggravate it and maybe I should lie down and listen to some relaxing music with one of those lavender scented eye-pillows over my stupid eyes but frankly I'd rather eat ear wax.

Bah humbug!
splodgenoodles: (angry moomintroll)
Damn but I am a SulkyNoodle today.

It's yum cha day.

And yesterday I was sitting round feeling really pleased about the fact that I was confident I would be at yum cha today. (I hope you can see the reason for being pleased about feeling confident). And to take it one step further before I tell you the rest of it (which you've probably already guessed), I was even thinking that this could be one of those days where maybe afterwards we could do something spontaneous like go for a little saunter through Chinatown and renew my quest for the honking great Chinese dictionary of my dreams.

*assumes you've guessed the blindingly obvious*

Still, at least it's not the ME so I needn't feel unconfident in that respect. I'm fending off a freaking migraine.

It's the second one in about 10 days, actually.

Given I've been mostly headache free this last year and entirely migraine free(thankyou metoprolol), this is quite odd. I'm blaming shoudler tension from too much knitting, although my left eye is a bit weird too, so if this continues I should probably see EyeGuy to check for episcleritis and stuff. Mind you, my prior experience of eye inflammation is that it's like your eyeball is giving birth to a set of skewers, so it's probably just good old fashioned headache.

And it's not that anything is so bad that I'm in a dark room with the lights out (obviously). In fact, in migraine terms it's probably a 3/10. But the nausea is bad and I strongly suspect that if anyone waves a stewed chicken foot at me I won't be a happy noodle at all.

So I'm drinking ginger tea and I've taken some panadeine and I'm aware that I shouldn't do anything to aggravate it and maybe I should lie down and listen to some relaxing music with one of those lavender scented eye-pillows over my stupid eyes but frankly I'd rather eat ear wax.

Bah humbug!

Mapping.

Jun. 27th, 2007 06:12 pm
splodgenoodles: (Default)
I suppose the next challenge is to see if I can go out to appointments now, instead of having people come here.

People coming here does free me up to do other things but it's not really moral. Hopefully, however, I'll find I will still have some capacity beyond getting to and from places. Be a bit of a bummer if this improvement means I have, for all intents and purposes, the same limits in life and activities except for the fact I can taxi to and from appointments two or three times a week and cope with sitting in waiting rooms.

The other next challenge is to see just how much more stuff I can get done beyond that.

I'm bored and twitchy so much now, but having serious trouble with concentration, focus and existential angst. You've got to watch that existential angst thing, it's a bitch.

So the other next challenge after that involves doing things that might actually be productive or useful or meaningful on some level. It would be nice to have more of a social life again. But I probably should have some kind of useful life first or I won't have a thing to talk about.

Mapping.

Jun. 27th, 2007 06:12 pm
splodgenoodles: (Default)
I suppose the next challenge is to see if I can go out to appointments now, instead of having people come here.

People coming here does free me up to do other things but it's not really moral. Hopefully, however, I'll find I will still have some capacity beyond getting to and from places. Be a bit of a bummer if this improvement means I have, for all intents and purposes, the same limits in life and activities except for the fact I can taxi to and from appointments two or three times a week and cope with sitting in waiting rooms.

The other next challenge is to see just how much more stuff I can get done beyond that.

I'm bored and twitchy so much now, but having serious trouble with concentration, focus and existential angst. You've got to watch that existential angst thing, it's a bitch.

So the other next challenge after that involves doing things that might actually be productive or useful or meaningful on some level. It would be nice to have more of a social life again. But I probably should have some kind of useful life first or I won't have a thing to talk about.
splodgenoodles: (Default)
If I procrastinated less I might get more done.

But I might also have to accept that my limits are far narrower than I like to think.

I would rest after tasks were completed rather than dither all day not really doing anything, and possibly have to accept that that's that for the day, rather than feel like I've got things to do, and I'll do them any moment now.

I'd have to deliberately stop myself from going further and doing too much, rather than be held back by the fact I haven't completed task one yet.

Which would mean, of course, that I'd be using my energy and my down-time much more effectively.

~~~
Vague ponderings about to-do lists. )

In other news, InsideCat aka Pachelbel aka Wonder Kitty went to and from the vet's today for tests. When she came home she was not so sick that she couldn't be suitably outraged at the indignities she had endured and horrified at the lack of choice in her food bowl. This was most pleasing. We'll get the results tomorrow.
splodgenoodles: (Default)
If I procrastinated less I might get more done.

But I might also have to accept that my limits are far narrower than I like to think.

I would rest after tasks were completed rather than dither all day not really doing anything, and possibly have to accept that that's that for the day, rather than feel like I've got things to do, and I'll do them any moment now.

I'd have to deliberately stop myself from going further and doing too much, rather than be held back by the fact I haven't completed task one yet.

Which would mean, of course, that I'd be using my energy and my down-time much more effectively.

~~~
Vague ponderings about to-do lists. )

In other news, InsideCat aka Pachelbel aka Wonder Kitty went to and from the vet's today for tests. When she came home she was not so sick that she couldn't be suitably outraged at the indignities she had endured and horrified at the lack of choice in her food bowl. This was most pleasing. We'll get the results tomorrow.
splodgenoodles: (Lock stock stoner eyes)
I was just watching an interesting (but eventually too long) doco on Melbourne street art.

They interviewed various local council people saying things like "well, we have a zero tolerance policy here in Stonnington so we remove it as soon as it appears and we've set up programmes to go out to local schools so that young people know that graffiti is illegal..." which had me cacking myself.

But the best one was the really laid-back former mayor of Yarra (ie - Richmond, sort of) saying something like "yeah, other councils with a zero tolerance policy may have had some success in their municipalities, but I figure if we try that here in the City of Yarra, we're quite likely to find a considerable number of our residents would take it as a challenge..." or words to that effect, which made me laugh even harder.

It's funny 'coz it's true.

I've missed out on so much interesting stuff in recent years. When I can get out and about more, I'll be taking my camera.

~~~

Odd observation: I'd say the two guys I was paraphrasing up there were both the same age and probably about my age, but miles apart in every other respect.

I don't like aged based stereotypes and I believe that when we buy into them we oversimplify things, overlook much of value and ultimately shoot ourselves in the feet(oi! the phrasing, sorry). However I'm still a product of my culture and I still find myself assuming that one is younger, one is older. Even more stupid when I realise that there are street artists my age and probably older, or at least plenty of people my age and older who've been part of that scene, and I'm 40.

~~~
Musing on diaries. )

Oh and I think I'm on the way to being a Better Person and hopefully more laid back too.

It's all good, really.

Maybe.

I hope.
splodgenoodles: (Lock stock stoner eyes)
I was just watching an interesting (but eventually too long) doco on Melbourne street art.

They interviewed various local council people saying things like "well, we have a zero tolerance policy here in Stonnington so we remove it as soon as it appears and we've set up programmes to go out to local schools so that young people know that graffiti is illegal..." which had me cacking myself.

But the best one was the really laid-back former mayor of Yarra (ie - Richmond, sort of) saying something like "yeah, other councils with a zero tolerance policy may have had some success in their municipalities, but I figure if we try that here in the City of Yarra, we're quite likely to find a considerable number of our residents would take it as a challenge..." or words to that effect, which made me laugh even harder.

It's funny 'coz it's true.

I've missed out on so much interesting stuff in recent years. When I can get out and about more, I'll be taking my camera.

~~~

Odd observation: I'd say the two guys I was paraphrasing up there were both the same age and probably about my age, but miles apart in every other respect.

I don't like aged based stereotypes and I believe that when we buy into them we oversimplify things, overlook much of value and ultimately shoot ourselves in the feet(oi! the phrasing, sorry). However I'm still a product of my culture and I still find myself assuming that one is younger, one is older. Even more stupid when I realise that there are street artists my age and probably older, or at least plenty of people my age and older who've been part of that scene, and I'm 40.

~~~
Musing on diaries. )

Oh and I think I'm on the way to being a Better Person and hopefully more laid back too.

It's all good, really.

Maybe.

I hope.
splodgenoodles: (Default)
1. Be in bed before midnight.

2. Watch more TV. And watch it during the day. It rots your brain far less than idle surfing.

3. Don't skimp on rest breaks on days when you go out.

4. Keep doing the 2 minutes legs above heart, 2 minutes legs below heart thing that you massage therapist suggested. It's possibly helping and possibly makes you a bit more energetic.

5. Have a hard boiled egg for lunch more often. You know you want to.




And this in bed before midnight thing probably means I should bugger off right now..
splodgenoodles: (Default)
1. Be in bed before midnight.

2. Watch more TV. And watch it during the day. It rots your brain far less than idle surfing.

3. Don't skimp on rest breaks on days when you go out.

4. Keep doing the 2 minutes legs above heart, 2 minutes legs below heart thing that you massage therapist suggested. It's possibly helping and possibly makes you a bit more energetic.

5. Have a hard boiled egg for lunch more often. You know you want to.




And this in bed before midnight thing probably means I should bugger off right now..
splodgenoodles: (contemplation)
I feel all melancholy tonight.

Not sure why, probably hormonal. But also I was hoping for good rain this week. We got the cool change this afternoon but it's still dry. That ain't right. You're supposed to have a good solid downpour with a cool change, that's how our weather works.

Oh, and our Prime Minister's a dick, but that's been the case for ages so I ought to be used to it by now.

I seem also to be in that in-between place again, where my capacity keeps shifting and I can't quite get a handle on what I can expect of myself or my days. I spend an embarrassing amount of time doing sudoku puzzles while feeling (unsurprisingly) unfulfilled, and I can't remember just what I did before these bloody puzzles entered my life. I spend a stupid amount of time staring at the internet, but without really engaging with much of what I see. So yeah, I might refresh my f-list a thousand times a day but rest assured, I don't have the powers of concentration for anything that even remotely resembles cyber-stalking. It's rather like staring at the test pattern. Idle surfing. It's really kind of depressing.

I have been trying to shift myself into other activities, with varying degrees of success. Just moving myself into action, beyond just running the rat through the same old maze that is my brain, seems to be kind of exhausting in itself.

On the plus side:
-I got some DVDs ready for a couple of friends, which required me to learn a few new things about software (particularly DivX) along the way, which was very satisfying.
-I've tidied up some of my bookmarks, I've cleared space on my hard drive, I've started messing around with spreadsheets which I've been meaning to do for ages, I've uninstalled and reinstalled things like computer literate people do. In fact, I think I am finally becoming computer literate, sort of, which is pretty cool.
-I've made various appointments.
-I've made good progress on my embroidery.
-I went out last night!
-10B moved some stuff round in the living room so I've now got space to keep a few little plants that can't cope with being outside anymore.
-I've watched some good telly and 10B is reading me a good book.
-And let's not forget last weekend was really cool and I survived it a lot better than I had feared I would.
-I no longer need 10B to fill an esky and leave it beside the bed for me although he'll still be doing it as a precaution if I have a heavy day. I'm well enough now, most days anyway, to get my own breakfast and lunch. This is huge.
-I'm cancelling all personal care and going back to just having homehelp, because we don't really need the personal care anymore. Will probably still need help getting out and about on an ad-hoc basis.

Really, I can't complain.

Hormones aside, this melancholy always happens when I have an improvement in my capacity. It's like I can't quite work out what to do, so I'm simply filling my time with lots more little jobs or something. What I am doing no longer feels so challenging.

So. Soon I'll readjust and find more challenges and probably feel better as a result.

~~~

Challenge is what keeps me happy. Stressed, but on some other level: happy. Or absorbed at least, rather than twiddling my thumbs.

This is also when I find myself looking at the millions of little things I want to get done and actually worry that I *will* get them all done...because then what will I do?

And these last two issues - the need for challenge and the fear of having nothing to do - have nothing to do with CFS and everything to do with me. And everything to do with being a fairly normal human being.

~~~~

Another interpretation would be that it's frustration: I find myself feeling happy about improvement but then comparing that improvement to how much better I want things to be. So "yay, I can get my own breakfast" becomes "yay, it's taken me over a year to be well enough that I can make tea and toast so long as I can have a lie down afterwards and so long as my days consist of staring at the walls...oh be still my beating heart".

But I've mentioned all this before.

~~~~

Time to go back and look at my plans and goals for the year, I think.

'night all.
splodgenoodles: (contemplation)
I feel all melancholy tonight.

Not sure why, probably hormonal. But also I was hoping for good rain this week. We got the cool change this afternoon but it's still dry. That ain't right. You're supposed to have a good solid downpour with a cool change, that's how our weather works.

Oh, and our Prime Minister's a dick, but that's been the case for ages so I ought to be used to it by now.

I seem also to be in that in-between place again, where my capacity keeps shifting and I can't quite get a handle on what I can expect of myself or my days. I spend an embarrassing amount of time doing sudoku puzzles while feeling (unsurprisingly) unfulfilled, and I can't remember just what I did before these bloody puzzles entered my life. I spend a stupid amount of time staring at the internet, but without really engaging with much of what I see. So yeah, I might refresh my f-list a thousand times a day but rest assured, I don't have the powers of concentration for anything that even remotely resembles cyber-stalking. It's rather like staring at the test pattern. Idle surfing. It's really kind of depressing.

I have been trying to shift myself into other activities, with varying degrees of success. Just moving myself into action, beyond just running the rat through the same old maze that is my brain, seems to be kind of exhausting in itself.

On the plus side:
-I got some DVDs ready for a couple of friends, which required me to learn a few new things about software (particularly DivX) along the way, which was very satisfying.
-I've tidied up some of my bookmarks, I've cleared space on my hard drive, I've started messing around with spreadsheets which I've been meaning to do for ages, I've uninstalled and reinstalled things like computer literate people do. In fact, I think I am finally becoming computer literate, sort of, which is pretty cool.
-I've made various appointments.
-I've made good progress on my embroidery.
-I went out last night!
-10B moved some stuff round in the living room so I've now got space to keep a few little plants that can't cope with being outside anymore.
-I've watched some good telly and 10B is reading me a good book.
-And let's not forget last weekend was really cool and I survived it a lot better than I had feared I would.
-I no longer need 10B to fill an esky and leave it beside the bed for me although he'll still be doing it as a precaution if I have a heavy day. I'm well enough now, most days anyway, to get my own breakfast and lunch. This is huge.
-I'm cancelling all personal care and going back to just having homehelp, because we don't really need the personal care anymore. Will probably still need help getting out and about on an ad-hoc basis.

Really, I can't complain.

Hormones aside, this melancholy always happens when I have an improvement in my capacity. It's like I can't quite work out what to do, so I'm simply filling my time with lots more little jobs or something. What I am doing no longer feels so challenging.

So. Soon I'll readjust and find more challenges and probably feel better as a result.

~~~

Challenge is what keeps me happy. Stressed, but on some other level: happy. Or absorbed at least, rather than twiddling my thumbs.

This is also when I find myself looking at the millions of little things I want to get done and actually worry that I *will* get them all done...because then what will I do?

And these last two issues - the need for challenge and the fear of having nothing to do - have nothing to do with CFS and everything to do with me. And everything to do with being a fairly normal human being.

~~~~

Another interpretation would be that it's frustration: I find myself feeling happy about improvement but then comparing that improvement to how much better I want things to be. So "yay, I can get my own breakfast" becomes "yay, it's taken me over a year to be well enough that I can make tea and toast so long as I can have a lie down afterwards and so long as my days consist of staring at the walls...oh be still my beating heart".

But I've mentioned all this before.

~~~~

Time to go back and look at my plans and goals for the year, I think.

'night all.

Antsy.

Jan. 8th, 2007 11:58 pm
splodgenoodles: (Default)
I am feeling antsy and dissatisfied with my life and I can hear a chorus of people saying "surely not, how can that be" in bored, sarcastic voices.

It's the meaning thing. I'm not very good at not having goals to pursue. I'm not very good at being unemployed and when I am employed, I have to believe in the intrinsic social worth of what I'm doing, it has to have value above and beyond paying the bills and value above and beyond being some activity I actually enjoy (or rather: I enjoy activities if I perceive them as having value beyond my immediate satisfaction.)

Funny how we often think of that as a sign of a Good Person when really, all I'm saying is I need to feel needed.

But then, it takes all sorts to make a world. The people who need to feel useful do get a lot of stuff done and do have their place in keeping society running.

It's also about enjoying feeling like you are where the rest of the world is, rather than somewhere on the periphery. We are a social animal, we find meaning in each other.

There were times when I used to love catching the peak hour morning train into the city - I just loved being part of the seething throng - but I used to feel kind of sad and mournful on the more quiet trip home (I always came home at odd hours so I missed the rush).

It's a desire for action which can't be fulfilled.

Enforced passivity shits me.

Antsy.

Jan. 8th, 2007 11:58 pm
splodgenoodles: (Default)
I am feeling antsy and dissatisfied with my life and I can hear a chorus of people saying "surely not, how can that be" in bored, sarcastic voices.

It's the meaning thing. I'm not very good at not having goals to pursue. I'm not very good at being unemployed and when I am employed, I have to believe in the intrinsic social worth of what I'm doing, it has to have value above and beyond paying the bills and value above and beyond being some activity I actually enjoy (or rather: I enjoy activities if I perceive them as having value beyond my immediate satisfaction.)

Funny how we often think of that as a sign of a Good Person when really, all I'm saying is I need to feel needed.

But then, it takes all sorts to make a world. The people who need to feel useful do get a lot of stuff done and do have their place in keeping society running.

It's also about enjoying feeling like you are where the rest of the world is, rather than somewhere on the periphery. We are a social animal, we find meaning in each other.

There were times when I used to love catching the peak hour morning train into the city - I just loved being part of the seething throng - but I used to feel kind of sad and mournful on the more quiet trip home (I always came home at odd hours so I missed the rush).

It's a desire for action which can't be fulfilled.

Enforced passivity shits me.
splodgenoodles: (contemplation)
Memo to self: if you are not sure whether or not an apricot branch can take your weight, it probably can't. Use the damn ladder.

~~~

It's not that I have been well since going out on New Year's Eve, or that I crashed more than I expected to in the two days after (in fact, I survived better than I had feared) it's just that I think I was expecting to feel better by today so every time I've gotten up and done something, I've been extra groany about how hard it is and how sick I feel.

Mind you, I was out in the yard for two hours last night, watering and stuff. That may have been foolish. And I've just been climbing a tree. Hmm. I think there's a pattern there.

And of course, a week ago I was convinced I had a virus and a month of CFS hell ahead of me, then two days later I was feeling surprisingly chipper. So who knows what tomorrow will hold.

The year ahead. Behind a cut because mostly, I haven't been paying a lot of attention to anyone else's. (Except yours of course, but I can't say that because it will offend the others so let's just keep that between you and me.) )

Aie! And suddenly it all looks too much and too exhausting and sick-making...

Did I mention I also intend to pace myself carefully and not overdo it and not feel bad if I can't do stuff? And eat healthy food and get my sleep cycle in order. And learn moderation especially in regards to not taking on too many things at once.
splodgenoodles: (contemplation)
Memo to self: if you are not sure whether or not an apricot branch can take your weight, it probably can't. Use the damn ladder.

~~~

It's not that I have been well since going out on New Year's Eve, or that I crashed more than I expected to in the two days after (in fact, I survived better than I had feared) it's just that I think I was expecting to feel better by today so every time I've gotten up and done something, I've been extra groany about how hard it is and how sick I feel.

Mind you, I was out in the yard for two hours last night, watering and stuff. That may have been foolish. And I've just been climbing a tree. Hmm. I think there's a pattern there.

And of course, a week ago I was convinced I had a virus and a month of CFS hell ahead of me, then two days later I was feeling surprisingly chipper. So who knows what tomorrow will hold.

The year ahead. Behind a cut because mostly, I haven't been paying a lot of attention to anyone else's. (Except yours of course, but I can't say that because it will offend the others so let's just keep that between you and me.) )

Aie! And suddenly it all looks too much and too exhausting and sick-making...

Did I mention I also intend to pace myself carefully and not overdo it and not feel bad if I can't do stuff? And eat healthy food and get my sleep cycle in order. And learn moderation especially in regards to not taking on too many things at once.

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