A Place In Thyme

rabbit rabbit rabbit .................

2010-07-08T03:45:00.000-07:00

... oh, and about the "girl" .. it seems that everyone knew where she lived/lives as people used to make a habit of saying where she was very loudly as they passed here .. often finding it quite funny .. and it was repeated time after time after time after time ... etc.

bye fer now

2010-07-07T18:07:00.000-07:00

I'm leaving the blogs for now .. according to something I was told it could all be second hand news anyway .. and other sources are much more exciting than reading this.

Don't know if the girl exists or it's just something they've found on a website somewhere .. though she's often mentioned along with the YMCA near here.. along with other crap .. guess I'm expected to react to the crap .. you've heard some of the reactions maybe.

Well ..........

For the past three weeks I've had a bit of trouble with some pills .. solved now .. but I'm also aware that not everything was down to that .. and this has been going on for much longer than a few weeks.

I've suggested, about the music, that they go find a record shop to picket, or something .. if that's where they're at.

I believe there are other blogs out there supposed to be written by me .. the only ones I've written are the four on this account.

Basically, I've been bullied. I don't know quite how it started here .. apparently someone showed a photo of me to a few people to see if they knew me and when they didn't started telling lies about me.

This is the result.

No one has spoken to me to see if any of this crap is real .. and I think that about says it all.

......................

2010-06-24T03:08:00.000-07:00

It is difficult .. maybe it'll be a few days or so before things are better .. anyway he was still a bit muddled yesterday so we'll see. Should have gone to the doc .

Was just thinking of Dr Wei last time I saw him in A and E. There I was thinking why is this man asking all these questions when I'm feeling so ill. Why don't they just help but ofcourse they have to find out what is happening because it might not be anything to do with my illness that they are used to seeing.

Last time I ended up in resuscitation because they thought I might have a heart attack didn't but had three days having to have everything done for me because I could hardly move .. amazing how the nurses worked .. had someone with me most of the time for the first day on the ward doing obs and just keeping things ticking over .. such hard work.

Guess you can kind of think that it could be easier to tell what you're feeling than it actually is. Though they are trying to work out if you have certain conditions.

Anyway to me a headache is a headache .. though could be very bad .. but add a bit of a fever.

Well

2010-06-24T02:42:00.000-07:00

Headache's gone .. but I can't really tell just how things are .. but they certainly look better this morning.

Seems to be over it anyway .. but not sure what the fever has left behind.

Suppose it kinda shows you how difficult it can be for doctors trying to understand what someone else is feeling.

Seems a lot better anyway.

Um

2010-06-24T02:11:00.000-07:00

Seems better but I'm not sure. Must've had quite a temperature I guess. Once before .. will do some reading on the net .. not quite sure what to do over all though .. seems a very difficult situation.

Er ...........

2010-06-23T23:52:00.000-07:00

Not til about three days ago and then it didn't really sink in til yesterday morning. Now that it has guess it's my new comfort blanket!! Suppose I should've taken a bit more notice to begin with.

Anyway .. there you go.

Well, can't see how they could ... but .. I am probably wrong .. in general .. going by experience

So difficult to see how though whatever way you look at it.

Anyway .. sunny day again .. yesterday I had an appointment at the hospital .. am back on the Cellcept and waiting for some treatment to be sorted out .. it's going to take a while though. Now I've got to see about trying to sort the rest out.

And as for what I was told on the phone last night .. guess things are much the same. Was a bit surprised among other things .. but I guess to have expected anything else would've been rather silly. Guess TJ and I could be like twins .. yeah .. well, they kinda have really haven't they. Maybe identical plaques in the town halls celebrating all the hard work she did to achieve this.

Not everyone's cup of tea certainly but there you go.

Morning

2010-06-23T02:06:00.000-07:00

Latest favourite piece of new music

http://freemusicarchive.org/music/Wildbirds_and_Peacedrums

Not recorded it for anyone yet.

Don't know

2010-06-22T16:44:00.000-07:00

And .. yeah .. I just don't know .. I just don't know. All I can say is that it can be very difficult to tell just what's going on when someone else isn't feeling well.

There are obviously headaches and Headaches and HEADACHES.

...................

2010-06-22T16:10:00.000-07:00

No .. didn't really spend all that much time thinking about it .. did test out one thing .. and still no joy .. can't work it out at all. Though I'm happy to think that later I was very riled up and'll just leave that.

And yeah .. if I'd ignored it people would've said I was stupid too.

Anyway .. hope to get the pain meds sorted out .. want to ask about the gabepentin too .. can't remember it being that effective but apparently, it can take a while to reach it's full strength .. as can the amitriptyline which had helped quickly for me .. suppose it depends on what it's needed for .. but it also made me feel a bit ill .. but someone has said that maybe I just needed to get used to it.

I'll ask if I can give it another try at a much lower dose.

I'm not asking that all my pain will go but I am hoping for a reasonable reduction through the meds that are available now .. and hoping that other things will still be on track.

Health problems

2010-06-22T12:21:00.000-07:00

Perhaps you do all think I'm totally off my head .. all I can say is that someone here needs some treatment.

And that is the truth.

Tuesday

2010-06-22T06:51:00.000-07:00

Searching again .. looking for a link. The site for people getting together to play music together .. or one of them. The one with the woman with the lovely voice.

I hoped I might've saved a link to her perhaps in capitals or something that might have easily let me recognise it easily but I haven't .. think I've found it though .. just got to find her now.

Must've done a Google search for that sort of site I guess as I've saved links to two different sites that are that kind of music communities.

Also decided to join somewhere that other people have spoken about .. within 24 hours of deciding I was too ill and too old.

Bit late really .. but there you go.

So

2010-06-22T05:16:00.000-07:00

Guess some people don't have a very good grip on reality.

Hippies

2010-06-22T05:02:00.000-07:00

http://www.jamendo.com/en/album/63039

Live in forrests.

So boring

2010-06-22T04:45:00.000-07:00

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

http://www.jamendo.com/en/album/4219

All sounds the same.

Etc

2010-06-22T04:22:00.000-07:00

Well, no, ofcourse not .. did I really say that!!! I was really born in a blackberry thicket in the Arctic circle.

Arctic circle .. Battersea?

Maybe my aunt was a giraffe.

Oh, sorry, that would be Australia, wouldn't it.

.....................................

2010-06-22T04:05:00.000-07:00

About four days. But it had been going on for longer than that .. remember the people with the supposedly x ray eyes that could see into my woven bag. Couple of other things too.

And the club with the apparently strange door policy .. would've been a very strange club all round. I mean can you imagine it .. oramorph!!!!!!

Fortunately I have points of reference that let me know I haven't lost it completely.

Monday

2010-06-21T09:46:00.000-07:00

After today .. well, the last few days I think I'll be looking for somewhere else to live. Where I recognise my own life for a start and so do other people.

Sunday

2010-06-20T09:32:00.000-07:00

OIH

http://voices.mysanantonio.com/mt/mt-search.cgi?IncludeBlogs=165&tag=opiate-induced%20hyperalgesia&limit=20

Will definitely ask about trying the amitriptyline again.

And, strangely, this has led me to Vit D. Seems that a deficiency can cause pain but, ofcourse people are worried about being in the sun now. You don't need to be in the sun for long to top up during the summer

http://edition.cnn.com/2009/HEALTH/08/03/vitamin.d.children/index.html

http://www.patient.co.uk/health/Vitamin-D-Deficiency.htm

http://newsblog.mayoclinic.org/2009/03/20/mayo-clinic-researchers-link-vitamin-d-and-chronic-pain-relief/

http://www.emaxhealth.com/1020/83/32596/ten-health-risks-low-vitamin-d-levels.html

............

2010-06-19T19:37:00.000-07:00

Feeling a bit coldy which is causing extra aches and pains. I'll be glad when they start sorting out my pain relief again. Someone visited me from the chronic pain relief team while I was in hospital this time but I was discharged before anything was decided!!!!

They reduced what I was taking by loafs when I was in around March because apparently taking loads of opiates has a kick back effect and causes extra pain so I was taken off nearly all of it. Fortunately there was very little withdrawal .. this might be because when a person is in lots of pain the morphine gets eaten up by the pain .. but I don't really know so that's just guess work.

I was allergic to something else they hoped would help and wasn't too good with something else which is usually used as an antidepressant but also helps with nerve pain .. say if nerves are crushed or something like that. I hope to try it at a lower dose which would be really tiny.because it did work before but made me feel ill. Maybe I should've tried for a bit longer.

Suppose I can get on the phone on Monday.

saturday

2010-06-18T17:31:00.000-07:00

Not a good day to put it mildly. Someone up on the roof across the road who was mirroring my moves when I looked out of the window a lot of the time by moving out of sight when I looked out.

Then I had people here who wouldn't believe me .. so, after one of them had said how logical my reasoning was I asked if everything else I said was so logical why on earth would I be imagining this. Have to say I did almost let myself be talked out of it for some reason or other for some bizarre reason.

There'd been a little bit more verbal crap earlier on and I lost my temper eventually.

Well, yeah .. it does happen occasionally!!

Going back to the other stuff I have to say that, unsurprisingly, there was this big rush of zero people!!!

Anyway .. was rather sniffley this morning but it seems to have worn off now.

..................

2010-06-18T05:22:00.000-07:00

Anyway .. whatever.

................

2010-06-18T04:32:00.000-07:00

Yeah .. I've been told that other people generally haven't been taken in by all that shit and like and appreciate the blogs.

The forest was apparently downsized to a wood a couple of weeks ago to make it sound a bit more believable!!!! Must've mislaid a few of my trees eh. I would really like to know how I lived in this forrest/wood. Up a tree maybe and how I managed to use the net from it.

Etc.

???

2010-06-18T03:26:00.000-07:00

Yeah .. totally. Not my problem though, is it .. they can read.

Huh

2010-06-18T02:55:00.000-07:00

Well, got it together to tell more people about what had been going on and why today. Couldn't really put it into order in my head last night and it didn't really seem to make sense .. very different this morning though.

Yeah .. totally round the bend .. but there you go.

Still planning on leaving though I'm being well looked after and having the physical problems in the illness looked after. I think yuck .. he just takes it in his stride. There is no way I could've been a nurse.

Marriage

2010-06-17T11:10:00.000-07:00

I don't listen to the radio now .. haven't for years .. I'm almost 60 years old .. which reminds me .. we've been married 40 years this summer .. couple of break ups .. and I thought the last would be the last a couple of months ago because we get on a lot better than we used to. Think it's probably because there's less .. well, I don't really know .. we used to get round the problems that were there .. physical problems that were the forerunner of this illness started quite early on .. but they weren't really the problem .. I think it was probably more tiredness and stress. But whatever things are so much better .. maybe we can sort something out but at the moment I'm going under with illness and tiredness,

Help?

2010-06-17T11:04:00.000-07:00

But it seems things have changed.

No help has been an understatement.

Why

2010-06-17T10:32:00.000-07:00

No point is there?

Didn't realise there were problems with Malcolm Mclaren, charity records and someone who worked so damn hard to change disadvantaged young peoples lives around. Things were different thirty odd years ago .. we were trying to help other people.

But there you go.

My mistake.

And if you've got yourselves in a twist about the few lines of a Pattie Smith song that was played while testing a tape out without knowing what the words to the song were, Rock amd Roll ****** or something. Well ... what can I say.

Don't know why people have believed this crap.

The last ten months have been .... for no reason at all.

Going .. going .. going .. gone

2010-06-17T09:22:00.000-07:00

I suppose most people reading this will have got what I was saying last night even though I didn't say it in plain English.

I've had one good nights sleep and a reasonably good one since leaving hospital. Last night was another totally sleepless one .. that's two out of the last four and I got about 3 to 4 hours on the other two. Not sleeping during the day either now.

I'm not managing my pills that well either though I do get the most important ones down at sometime.

Not managing to eat and drink that well either.

A friend had suggested a way to break the monotony and get a bit of fresh air at the same time without tiring myself out but I found out yesterday that it wouldn't be possible which meant that I was going to find myself feeling as if I was suffering from cabin fever a lot of the time with no real break.

Well, if standing in my doorway for a little while waiting on a friend and talking to my brother on the phone for quarter of an hour means what it seems to here ................

Yes!!!!!!

Giving myself to the New Year to sort things out.

Meditation etc

2010-06-17T00:31:00.000-07:00

Found some music that might be nice for meditation .. for some reason I didn't save the link so now have to trawl my way back through yesterday's history. Also found some folksy music that was nice but maybe not quite what I was thinking of .. didn't link to that either.

Also a very interesting looking Buddhist site that I'll probably go through.

Will alternate that with the language lessons and the rest.

Will put the links up later.

Thursday

2010-06-16T13:35:00.000-07:00

Went out for a short walk .. four minutes .. rest .. four minutes back. Things have changed down the road too .. used to be a car park there, an elderberry bush and a tree that was blown down in a storm years ago. The car park is now flats.

June slept right the way through the storm and was surprised there was no electricity .. think she phoned rather than came up to find out what had happened. There'd been a hurricane over night.

http://iberianature.com/britainnature/remembering-the-great-storm-of-1987/

Longest walk since I've been back. Breathing isn't brilliant at times at the moment so that was far enough.

Was expecting a friend over to drop something off .. on another day. Well, got some fresh air while waiting for her!!!

Sadly made my mind up about something else during the evening. Had discussed it before after someone had said that I needed to get a bit more fresh air. Afraid peeps it won't be possible. And you thought it was a joke??????!!!!!!!

Creepy .. creepy .. creepy and even creepier.

So ??? Looks like it might be the best answer .. would have been ok otherwise I guess.

Also discovered that someone thinks my computer must be at least ten years old. Must be one of the kind you plug into trees too which is probably why it's still grumbling along.

Anyway phoned my brother .. not for long though as I was rather queasy and had to say that I'd call back later. Well prepared these days though as I now have two kinds of anti sickness pills. Just talked a bit about music. He'd bought a friend a Woody Guthrie CD which brought back a few memories as I used to have a Woody Guthrie song book back in the day .. think it was the most used along with the Buffy Sainte Marie one and a couple of tutors for quite a while.

Not much sleep again even with the pills but fortunately things haven't got worse. Only took the cyclizine.

Thought about Afrika and the bunch from way back when. It's said that he and the work he did saved a lot of lives. The effect could be more than just on a local level as it was through them that I became more aware of the human rights movement.

Will probably try to get some sleep during the day.

............................

2010-06-15T12:06:00.000-07:00

About the last four days .. but it had been going on for longer .. you know .. the people with the seemingly x ray eyes who could see into my woven bag!!!!

And this weird club .. where the door policy seemed a bit strange to say the least. Such a strange place too .. where oramorph was apparently very popular.

Fortunately I have points of reference if I ever think I'm losing it completely.

Memories

2010-06-15T12:03:00.000-07:00

Can remember what he looked like now too.

The Duke

2010-06-15T11:53:00.000-07:00

You know I remember The Duke when it had the ex copper running it .. Dave??? John??? Used to have the Danny La Rue type nights which you could just about squeeze into. Used to be a lot of fun.

Things seem to have changed rather I must say.

Sigh

2010-06-15T11:40:00.000-07:00

Have just spent the last hour or two reading medical stuff again and I'm getting really fed up with it. The pills I need are here from the doc .. phoned for a phone consultation this morning and spoke to her this afternoon .. but am looking through the home remedies too for a little bit of extra support.

I've already been totally confused by some of the differences in dosages with conventional medicines.

Anyway I'm now going to try a bit of extra support with home remedies.

Have a hospital appointment very soon and will discuss the whole thing then. Have to take a list of questions in with me,

We're such b*****s

2010-06-15T05:50:00.000-07:00

Well T***** or Travis

http://www.theunbeatentrack.com/

and Malcolm and Afrika and the Zulu Nation etc

I guess we know what's what huh?

Goal posts here and there .. completely bonkers!!

And that silly President and his literacy thing .. er .. magy .. jig.

early Saturday morning

2010-06-15T05:16:00.000-07:00

Was great to come out of hospital to this crap.

The most prejudiced blog on the net

2010-06-15T00:14:00.000-07:00

Played a few songs from Duck Rock last night and this morning .. Buffalo Girls and Double Dutch mainly. Well, they were the main hits of the time. Think more or less everyone of around school age danced to them.

Well .. why not .. I'm a hip hop w**** .. fill in gap .. no not wombat sillies .. too many letters .. might as well live up to my reputation .. huh?!!!

Sssshhhh .. apparently I used to play hip hop all day long!! Not quite sure where .. but there you go.

But then again I was wrong if I didn't apparently too .. or something!!!

The person who told everyone this is apparently a good friend of mine .. found that out just after leaving hospital .. yes, that person again. Strange as I don't know who she is. Though I do know she's a very good friend of a lot of people round here.

Um .. wonder what they have to say about Afrika Bambaataa who did all he could to help the people back in those days and was connected to the Buffalo boys and girls.

And strange they weren't worried when the charity single was played.

Monday

2010-06-14T15:47:00.000-07:00

Slept well but day didn't start off too well again .. but didn't get bad enough to have to go into hospital.

And .. actually went to Tesco in the late afternoon .. soup .. soup and more soup basically. Plus things like spaghetti that you can add to soup that don't take much chewing.

Slept well last night .. not so good at the moment.

Won't get fooled again

2010-06-13T02:28:00.000-07:00

Hippies in forests .. do it yourself abortions in your fifties and very ill .. a family of gangstas .. and movable musical goalposts .. BDSM or something similar pemphigus .. we don't like her but she's our friend again .. sweet thing.

She's here .. no she's not .. yes she is .. no she's not.

She's a bloke from Warwick .. or this girl .. along with one or two other descriptions.

??????????

Hospital and back

2010-06-12T22:18:00.000-07:00

Wasn't too sure if I was well enough to come back this Friday but things are better than they were last time though I actually felt better when I left hospital the previous time than I did this Friday. Anyway, if things move that way again I'll phone in and ask what to do. Should really have gone back in on the Saturday morning the first time because things weren't too good when I got up though they did improve during the day.

No choice by Sunday morning. Can't remember too much about it once I'd arrived at A & E which would've been around 11am I guess .. maybe earlier. Was told I was semi conscious through a lot of the time and was in the resuscitation area for a while. I've no memory of that at all .. and was eventually taken up to a ward around 1.30 early Monday morning.

Stayed there two or three days, again with some really heavy nursing going on .. was on fluids as usual ... couldn't move much by myself and couldn't eat or drink until shortly before I left for another ward. Managed a few sips of Fortisip and was able to take some meds by mouth.

Then went to another ward. Was still on fluids and not able to move all that much for a while .. though there was definitely a bit of an improvement by then. Though I was getting better .. things were still a bit of a blur.

Guess that might've been on Wednesday .. but I'm not sure as the nights and days had been running into each other. I've memories of the other patients and the staff on the first ward and one of the patients getting a nurse for me when I wasn't well enough to use my buzzer and was asking for a nurse when there couldn't've been a member of staff close enough to hear me.

Think I managed a Fortisip soon after reaching the second ward .. probably didn't eat anything but might've drank a build up soup that day. Didn't really manage to eat more than a couple of spoonfuls of anything til a couple of days before I left when I managed a Weetabix both breakfasts.

Didn't feel that good the day I left but am able to get around. Not feeling that good this morning but then I didn't sleep last night and wasn't managing my meds as well as I should. Usually very careful but could've done a bit better yesterday.

Drank a reasonable amount of water and stuck with the Fortisips ans soup and bread.

Will start the morning meds and breakfast off now.

Nancy

2010-06-12T18:27:00.000-07:00

Down to earth and rarely complained. I knew that getting around wasn't so easy for her anymore .. though she did go down the road to feed the birds ... and that she had problems catching her breath at times but she'd hardly seemed to've changed. Still looked much the same, same voice and same sense of humour and attitude. And twinkle in her eyes.

Think I met her on my first or second day back and she made it seem as if I'd hardly been away at all.

Nancy

2010-06-12T17:57:00.000-07:00

I heard some very sad news on Friday soon after arriving back from hospital. I was told that Nancy, who lived just down the road from here had passed over a few weeks ago. Had known her for a very long time.. she was in her 80's and had moved here from the Elephant and Castle many many years ago where her mum and dad had a pub.

I saw her just after coming back and had taken her a birthday card. She'd tripped over and injured herself some weeks ago.

Think of her feeding the birds under the bridge.

One of us often saw her in the street or out of the window and had wondered where she was.

Saturday .. and a bit of Sunday

2010-06-12T14:09:00.000-07:00

Last of yesterday's .. as it is now .. pills downed and a bit of soup before trying to get some rest. Haven't done what I meant to today but there you go .. maybe later, hey.

My legs have felt really heavy for a few weeks ... think they were slightly better this evening .. again .. see how things go.

Ssssshhhhhhhhhh

2010-06-11T17:12:00.000-07:00

Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Track .. stars in your eyes

http://www.jamendo.com/en/track/575987

zzzzzzzz

2010-06-11T16:44:00.000-07:00

Ssssshhhhzzzzzz J!!!!!!!!! ... or do u think those exclaimation marks are a bit too loud.

Sssshzzzzssshhhhhzzzzzzzzzzzzzzzzzzzzzzzzzzzzzsssshhhhhhhh

zzzzzzzzzssssshhhhhhhhhh

Sigh

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

A couple more weeks

2010-06-11T14:39:00.000-07:00

Turned out that I had to go back to hospital for a couple more weeks or so as I wasn't quite well enough to leave before.

Saturday

2010-05-29T10:21:00.000-07:00

Been dozing a bit. Woke up round ten and then had something to eat .. then went in and out of a doze really.

First few days out of hospital are usually tiring.

Almost 60

2010-05-28T23:01:00.000-07:00

This blog is generally going to be about music somewhere near music you could hear in the 60s/70s .. old school type music .. classic whatever because that is what I've grown to like through listening to it for years .. happens a lot cause you just kinda sink into what you recognise .. there's a link between music and brain.

Same with most of the things I talk about .. I'm almost 60.

International Music

2010-05-28T22:36:00.000-07:00

That will probably be the only Dutch/English combined vocal music up here ever so I'm starting and ending the night's music with it,

Time to snooze

Etc includes a reminder that I'm almost 60 .... eeek!!!!

2010-05-28T21:53:00.000-07:00

It can take quite a while to find the CC music you're looking for and there seem to be loads of mini net labels that google likes you to be very accurate about before it will include them in it's results plus all these places where people get together to make music. Some of these you can find in on line music and culture mags.

Always .. but always save the addresses of places you like because for some reason or other it can be very difficult to find some them again a bit later.

Try mixing the words creative commons, free and copyleft in your word search .. don't always put them all in.

I tend to Google the Google addresses you come up with and any likely possible artists you might want to check out to find out what you can about them.

The more you know about the music the more likely you are to find what you're looking for because you know more words connected to the music that you can include in the Goofle search. Mix them into various patterns.

Check ur spelling .. last time I typed Google before the last time it was totally Foofle.

Other useful words to use in any of these CC searches along with CC etc are netlabels and music blog.

Etc.

Check links in links.

A few weeks later ..........................................

Whoops .. mistake .. but you're quite likely to be still getting more results when you weren't expecting anymore.

On..wards

2010-05-28T21:48:00.000-07:00

Excellent though!!!! Time to meander on ..wards!!!

On ..wards??!!!! or whatever .. noot looking bac.

Dootch .. eengleesh

2010-05-28T21:15:00.000-07:00

So ... we had the new Dutch/English hip hop record .. CC .. copyleft and all that on the front page of the magazine I linked to just before I went into hospital which should've given lots of trails to go on.

Had thought of putting it up separately when it flittered across my screen the first time but ended up putting in via the mag so there'd be more choice. There's another much older disc around too.

changeover

2010-05-28T20:30:00.000-07:00

I just don't care anymore .. all over everywhere. What's the point .. most people know a lot more than I do as well it seems. Just forgetting it cause it's just so way past daft.

Anyway .. Debbie and Chris

http://answers.encyclopedia.com/question/disease-did-chris-stein-have-392773.html

http://www.allposters.co.uk/-sp/Debbie-Harry-Singer-Leader-of-the-Pop-Group-Blondie-with-Boyfriend-Chris-Stein-Posters_i4160093_.htm

I've had to reduce the mycrophenolate because the docs think that it might be making my heartbeat go much faster than it should in conjunction with another med which has been reduced too. Needed to come down as it reached a high of 150 beats a minute while resting when I was in hospital. The mycrophenolate has been changed over to a higher dose of prednisolone which actually work better as things are at the moment to heal what happened a few weeks ago.

SO ............

2010-05-28T18:54:00.000-07:00

Had a mad moment there I guess when I thought things would be sorted out with a bit of humour but it never goes right.

I just don't get it to be honest but there you go.

What abortion? Would like to know how I managed that in the retirement warden controlled premises I was living in while looking after my mother and ill. Would've been a double miracle as I'd been through the change .. another reason why my back went so quickly .. rotten timing there .. but the body gives up calcium very quickly just after the change .. more than at any other time.

Forrests? There b hippies lurking in ur forrests. Seems like at the bottom of ur gardens too. Don't know if they're all OAPs or round abouts.

Um .. and what does good friends mean?

anyway

2010-05-28T17:34:00.000-07:00

One of Debbie Harry's group Blondie has the illness too but his was controlled without the trouble I've had possibly because he was younger when he developed it .. or maybe just because .. one in ten doesn't make it through and I guess there are different degrees of illness for those who do. I'm not too good cause of the mouth and fragility. He was Debbie Harry's partner for 10 years after developing it and he married an actress after that relationship broke up.

It's a bit like cancer in some ways in that the body's gone wrong .. the immune system goes and attacks the wrong things .. same as it does with rheumatoid arthritis and other auto immune illnesses. Lupus is another illnesses which is very like it.

http://www.lupusuk.org.uk/

My illness

2010-05-28T17:21:00.000-07:00

Guess I should add that my mouth is the worst affected and I have two other problem patches that the meds haven't sorted .. but I do have to be very careful with my skin. Also I have the bone probs which happened because of the cortico steroids .. can't put it right again but as long as I take my meds hopefully it won't get worse.

It can all be very painful though.

Soup

2010-05-28T16:32:00.000-07:00

Anyway .. having a swig of the mouthwash and then some bread in soup and at sometime off to chair.

The problems were a run on from the last few weeks and I don't know when or how that's going to be sorted but they've taken some things down cause it seems they were giving me more trouble as they were and put other things up so the pemphigus doesn't get worse than it had and hopefully will go back to the way it was before the last chemo. That's the auto immune illness that's like rheumatoid arthritis in some ways but instead of destroying the cartilage between the joints it destroys the stuff that holds some of the skin and mucous membranes together. It's a very, very rare auto immune condition so no need to worry about it at all.

Have to say the staff at St Thom's were brilliant .. there just isn't anything to fault them in at all and if the meds aren't quite as they need to be the docs will look at them again.

MBM ..Maybe the Maudsley??????

2010-05-28T15:21:00.000-07:00

A talking to.

back from hospital

2010-05-28T10:17:00.000-07:00

Back from hospital but seriously not well at the moment.. guess that goes without saying really. Medication changed quite a lot so we'll just have to see how things go.

fot now

2010-05-21T20:40:00.000-07:00

And the blog is over for now cause I'm too ill to write it

Had a look

2010-05-21T17:55:00.000-07:00

Actually, I think, after listening to their last few new songs they need to get their groove back on a bit. Don't really like a couple of them .. but maybe they're a bit upset about the coming split amd it's coming through in the songs. Or, maybe, they haven't the time anymore to really spend much time on it at the moment.

There were songs I didn't like before too ofcourse .. but guess at the moment though it's probably more down to the split. I haven't listened to all the older songs .. so who knows what little "gems" might be lurking there.

I won't put the link up because .. some things here and there will offend some people. which I thought was a shame and there's an age limit to it as I think I said before.,

They seem to be changing over to a more regular band now

Touch down

2010-05-21T17:19:00.000-07:00

Ha ha. I once said that I wished that I could put a link up to some songs that sometimes have me in hysterics. But they weren't really suitable for the blog .. well, not right across the board .. but here and there I'd think it has to be no!! And it did.

Well, it's vaguely possible that the band might become known in the UK soon anyway as two of them are moving to Dublin. They'll still be working with the rest of the band though. The day job's the reason they're moving.

They seem to be mixing regular songs in with the humour more often now too.

We shall wait and see what happens when they're here .. lol!!!

...............

2010-05-21T16:04:00.000-07:00

Well, it's obviously just for some people .. hey.

But then .. I guess those that can't tell the difference between um sleeping around .. not sleeping with many people and sleeping with lots of people will have trouble making sense of it anyway. Not that I would be judging what other people are doing anyway in that way if they weren't hurting people but that's not what I'm talking about.

To be honest, if you're mind is caught up there I think it's very difficult to make sense of any of it.

And, to those, looking for power .. um, have you ever met a person who can make things happen at will. I certainly haven't and all the studies haven't either. Would be very nice if there was a way to cure the illness and stop the pain .. but obviously there isn't.

And .. I guess I'm going to have to move on with things now. Didn't think it was worth bothering about .. but I've been proved wrong.

...........

2010-05-21T15:49:00.000-07:00

Which is what Arthur Koestler was interested in, the guy who left the money for the unit at one of the Scottish Universities .. Edinburgh or Glasgow I think .. can't remember which one now.

Well, it'd probably be refered to as synchronicity.

But, interesting as it is, don't know if I'm really well enough to take in that much info and think it through now.

There is just so much to read and think about and try to work out where it stands in the realms of possibility .. mathmatically .. coincidence/synchronicity.

Whatever .. there's plenty to read.

Bit tired at the moment

2010-05-21T15:37:00.000-07:00

Suppose back to reading about coincidences ... or something. Well, if I feel up to it.

Going back in time

2010-05-21T15:22:00.000-07:00

http://www.woodstockstory.com/peacesigns.html

Signs of the times

Another one

2010-05-21T15:09:00.000-07:00

Another one .. make it yourself .. well, I used to

http://jellybeanlane.blogspot.com/2007/04/freebie-hippie-chic-mini-scrap-kit-by.html

Looks a nice blog

2010-05-21T15:01:00.000-07:00

http://susan-conwell.blogspot.com/

Found it while trawling through loads of hippie stuff .. lots of it seems to be hippie partywear for today and stuff like that though.

Memories

2010-05-21T13:32:00.000-07:00

Anyway .. leaving it here .. known Mr D for 40 or so years ..better friends now than we were trying to make a go of it before. I typed in 30 to start off with .. not quite .. really!!! As I said life meanders and things are fine now.

And I can say this on authority of another teacher .. he was a very good teacher. I've known her for umpteen years too.

Were we all hippies?? Well, Cheyrll used to wear long dresses and beads etc and I think Viv did too and I think we all were. My views have stayed much the same over the years I guess. Can't get into a lotus position to meditate anymore though.

Long time ago and I haven't tried for years.

It's strange .. looking back over the years .. time .. I remember it all. not as a film being played back or anything like that but I can dip into my memories over time.

Pills

2010-05-21T05:23:00.000-07:00

Have known Brixton since the early 70s and was, infact, by coincidence, born near here .. my parents were staying with one of my aunts, who lived in Battersea, for Christmas. I arrived six weeks early,

Arrived back in 1970 something. First in Santley Street and now here. Slightly different from that Christmas all those years ago but mum and I did spend another Christmas in Battersea .. I got chickenpox and there was a lot of snow. Must have brought a lot of memories back for mum.

Whoops .. forgotten to take a pill ... not the way to go .. eh.

Done it .. it got stuck to the roof of my mouth but it's sorted now. Doesn't taste too good though.

I dunno .. maybe I should've left upping the other pills til I'd finished these.

Too late now though .. still only a couple of days to go on the other ones.

Anyway

2010-05-21T03:17:00.000-07:00

Don't know why people just didn't ask me. Half the things she said weren't possible seeing that I'm almost 60. As someone said I appeared very vulnerable because I'm ill. I suspect she'll be looking for someone else now cause I guess that's what she likes to do.

I don't know who she is though. A young couple did say that the problem was started by a group of far right people and I was told one of the blokes is an ex hard drugs user with a number of issues who now tries to solve his problems with drink which is making things worse.

Anyway this is my house and we get on together, as very good friends, very well.

Seems one of the problems caused by the chemo has cleared up .. so onwards now. What happened on Monday shows I can at least have another week on a higher dose of steroids without it being a problem .. so here goes. Have wondered if I should leave it til after I've finished the new pills but I'd really like to start now.

Yuk!!!!!

2010-05-20T18:57:00.000-07:00

Probably took about half an hour.

It'a usually a bit longer than that. Just goes to show you doesn't it.

Silly me .. trying to be diplomatic.

Edittningings

2010-05-20T16:54:00.000-07:00

Ah .. friend has just called to say I've NDEd for and OBE .. too much editing again. My mind's been rather somewhere else I guess this evening. Though he did say that he thought I was talking about when I've been feeling very ill in hospital. I didn't .. it was a mistake. lol.

Edittong

2010-05-20T16:11:00.000-07:00

Exchanging a this for last. Too much editing. Though have just added to it by editing the editing of the editing I did before!!!

Gud night

2010-05-20T15:28:00.000-07:00

Well, that's done now. And I wouldn't keep things so cut and dried .. life meanders here and there. Suppose I soon won't recognise it as my life again. Changed that cause I'm not sure how to put it really.

Well, back to the old usual ... New Scientist day tomorrow leaving behind last week's edition whose leader is Age of Denial .. Why so many people refuse to believe the truth.

Calling the mobile maths dept .. I don't think people can quite figure out which book you mean. Think you might be a bit confused and might be missing out on the lols!!!

Anyway .. it's gudnight from me

Studying

2010-05-20T11:06:00.000-07:00

And I might as well write a little summary on the life after death thing as it should only relate to what's in the blog.

I have not had a NDE .. if I had I wouldn't be talking about trying to have a OBE to see what it's like to have some kind of mind/body separation. As I said, when that study was published, I was very glad that I hadn't because it'd be difficult to think back to something as complicated as that if it hadn't happened. I was studying them which is how I found out that there was much more to it than it seemed after reading something by an American University professor who also studies this kind of thing. I'd read enough before to know that it was more complex but this just cleared it up.

If you want to know as much as I do about NDEs .. read the literature on them as I have then you'll know too. I have spoken to two people who've had them but that is the only difference.

There are plenty of books about all aspects of this research and plenty on the net .. I had a few experiences that made me want to look further into it all .. and after spending years doing it I now believe there's a continuation of the soul. I posted one person's experience up a couple of weeks ago and there are plenty more to read on the net .. about that and all other connected experiences. If you read them then, you, like me, can make your own minds up about it all. I've decided that there is life after death.

more mouthwaash

2010-05-20T06:53:00.000-07:00

Call back .. not feeling terribly well either so I guess I should talk to a doc because the effects of the chemo will still be there.

Guess I better try some of the protein mix and go and get another drink. It's so difficult trying to eat and drink enough during the day .. might not sound it .. but it is. Thought I had a bit of an appertite yesterday going round the supermarket. Was the first time for ages that I'd felt that I felt like eating .. but when it's came down to it .. not really interested.

Ah, the docs just rang .. seems one pill is making another condition worse .. but as I've only got another three days on them it won't be too bad .. got another med to help with the other one til I'm off the others .. had to have them. Have to make sure that the other condition is kept under control as much as possible though.

It's a mouthwash!!!!!!

Perhaps I should start a collection .. perhaps I have.

Porridge

2010-05-20T06:06:00.000-07:00

Now I've got to go and get my meds sorted out as it seems the newer ones aren't on the docs computer yet.

Managed to eat some but still not that much .. probably start eating porridge for breakfast I think. He's been eating the stuff for years, the winter morning breakfast before setting off fer school .. still eating it and doing well on it, Hey!!! So I might ask if I can try some tomorrow as I'm a bit porridgeless at the moment.

Had a couple of bowls in hospital,but apart from that, haven't eaten any since I became ill. Time for a change maybe. If, I remember rightly, I think I heard that a certain lemuure used to like it a lot and is probably still eating it.

The planes fly low round here. Just been out the front for a while and seen one through the clouds. It's quite a nice day but there's no way I can go out again but have to say that cabin fever starts to set in after a few days and I feel I need to escape for a while.

Anyway, off to try and get the meds sorted out. Doc will probably phone back later so I can't leave it too long.

Music mag

2010-05-20T04:10:00.000-07:00

Probably linked to this before

http://phlow-magazine.com/

Covers the copyleft music scene and there are links on the side to different kinds of music. Probably introduces you to different netlabels etc too.

And, as far as hip hop goes .. I used to have a link to a copyleft political/spiritual hip hop site but it's lost now and Google won't bring it up in the results so I guess it's moved on somewhere. All I can remember is that it was French.

Maybe you'll have better luck than me.

Thursday

2010-05-20T00:55:00.000-07:00

Do have a bit of a cold but am not too bad with it considering the problems sneezing can bring and I'm a bit stiff after passing out.

Didn't eat much last night cause I drifted off to sleep again quite soon after eating half my sandwich. Guess the new pill might be making me feel a bit drowsy.

A lot of my meds are much the same as people take who have cancer .. noticed the Cellcept, mycrophenolate, being described as a chemo drug on one site. It's usually described as a steroid sparing drug though but was initially developed for people who have had transplants to stop rejection. Seems none of the other chemo drugs are suitable for this illness.

My mouth is so painful though .. even when the effects of the chemo have gone it'll still be really bad .. but there you go. The mouthwash does help you eat .. sometimes better than others for some reason or other. I suppose it might be something to do with how much saliva you produce cause that would dilute it and it's not as if you're swishing loads of the mouthwash. There were a few of us using it on the ward I was on in hospital. You'd hear the nurses saying remember do not swallow.

It seems the best thing to do is to swirl for about 3/4 mins .. wish the effects lasted a bit longer once you've done it. There's no way you can use it twice, partially because it's diluted, it's also pretty yukky once it's been used and, also, I think it changes a bit after it's been used once .. I'm not sure about it but I didn't feel too good the time I tried and there wasn't too long between the two rinses. I wouldn't do it again. Horrid.

Wednesday

2010-05-19T13:01:00.000-07:00

Well, I went out and am back feeling very tired but better than the3 last time I was out here .. not surprising I guess as that time was just a few days after I'd taken the tablet.

The swelling has gone down a lot so something's on the mend. Still problems from it all. It's amazing though .. this morning I was wondering, for a little while, if I'd be calling the hospital up again for advice or going in cause of the way I was feeling .. but, a few hours later, I managed to go out for a while.

Didn't really want to go that much .. things are still much worse than they were but ... well, there you go again.

Oh .. so things have altered that much have they???? C'est la vie .. huh.

As for them .. well, don't know what's wrong so hard to say what would help. They certainly sound as if they have quite a lot of charisma and know which buttons to press when it comes to other people.

Anyway .. off to do the pills etc and try to eat something .. still haven't managed and, unfortunately, still don't have any appetite.

Anyway, I'll try again.

Fell asleep

2010-05-19T04:34:00.000-07:00

I dunno .. maybe a bit of therapy is needed to help them sort their heads out a bit .. and pills. Well, I do know something about pills now .. their's will be much nicer than mine though. Or, maybe just talking or the two combined.

Though, having said that, mine do help, I just happened to be one of the people who doesn't respond well to cyclophosphamide .. more's the pity.

Whoops .. fell asleep for a few hours.

Guess I better go and get something to eat and drink .. didn't get round to the eating part earlier on. Had made a bowl of soup and bread but didn't feel much like eating it earlier possibly cause I've got a bit of a cold. Got my pills done which was the important thing.

Anyway .. will try again.

?????

2010-05-19T03:18:00.000-07:00

I don't think, judging by what I've heard, that, if it's not in the blog, they haven't managed to get anything right .. and even then they still manage to misinterpret really badly!!

?????

2010-05-19T02:40:00.000-07:00

As for the rest .. what can I say. I said how it had started somewhere in the blog soon after I came down here. People there knew I had lived here and was coming back to rest up some more and all I can think is that they knew someone here to start this off.

I don't know who they are because I didn't know that many people there .. so they wouldn't've known all that much about me either except what was in the blog and what they overheard outside the window which wouldn't've been very interesting to them.

Anyway, some of you must know them so I guess you know more than I do.

3 .. 2 ..1

2010-05-18T14:33:00.000-07:00

3 .. 2 .. 1

It's quite early to do this .. usually wait til about 12 to clean my teeth .. though I can just use pain relief and have a cup of tea or something during the night without it being too painful. I might talk to the docs about the mouthwash dosage but I don't think they'd want to prescribe much more at the moment. I was told that the dose I'm on is the standard dose by a pharmacist at St Thomas' s so I guess they might not want to prescribe any or much more.

In the next 20 mins

2010-05-18T14:12:00.000-07:00

Got half a sandwich left too so I'll have my last mouthwash, take my pills, eat that and go and clean my teeth .. as the mouthwash is really something you don't want to use twice. The only description I can give is ... yuk.

And, it's not something I'll try again!!!

20 mins it is then.

Meds

2010-05-18T12:15:00.000-07:00

Whoops .. got cyclophosphamide wrong .. but right now. Usually check it out before I type .. did it the other way round this time.

Anyway .. they're not a med I'll be prescribed again. Done the two weeks with the immune system being lowered and it's now on the way up again.

Will take my other meds now. A bit late tonight and about time I sorted that out.

Pill seems to be helping

2010-05-18T11:42:00.000-07:00

Going to give supper a go now .. didn't do too well yesterday ... mouthwashes or not. Things are a bit better today. Not really into Fortisips ... really!!!!!

Mouthwash done ....

Goes to nibble sandwich ...

Half a sandwich down .. and, it looks like, some of the swelling. Maybe it's something to do with the effects of the cyclophosphamide starting to wear off. Think it was just over two weeks back that I took the pill. Maybe the new pill is helping a bit. I really don't know.

Time for another soon anyway .. two a day of these.

New med

2010-05-18T07:41:00.000-07:00

I think this new pill dries my mouth out a bit .. sigh .. but I guess that I'll have to continue with them. Well, it's Tuesday today so maybe give them another day, might adapt or something. If not there might be something else. It might just be a mixture of the different meds though ... who knows. Hey.

Keeping an eye on things though after the chemo. Took the first of the new pills this morning rather than last night so I could see how things go as I'm still recovering from the effects of the cyclophosphamide and taking such a heap of medication at the moment.

Anyway .. yet again, see how it goes.

Finding copyleft/creative commons music

2010-05-18T05:09:00.000-07:00

Still feel too tired to do much .. keep on kind of dozing/dazing .. whatever it is you do when you're so sleepy ,, not quite going to sleep but too tired to really do anything.

Have been trying to trace a link I found when I was Googling for music links on Sunday and I'm too tired to really go through a whole weeks history.

Oh .. and a word to people who want to find a particular sort of music .. Google is the way to do it .. maybe though start off on the Jamendo sound cloud .. even if you don't get in to what you like there you'll probably find other links through their links to Myspace etc by clicking on the friends links on their myspace page or on their own websites as they're producing free music themselves.. If it's about your favourite type of music maybe you can start a blog about what you find to share with other people. Think I blogged about the Jamendo sound cloud a few weeks ago for those who want to find a particular kind of music. It's one way of starting or google up a creative commons /copyleft magazine to read as they cover all kinds of things. More people searching the sooner you'll find yourselves in the right community and only the person looking really knows what that is as there are so many sub divisions in all sorts of music these days.

I've put up links to info about free music so you know the jargon that goes with it and there are plenty of articles about finding free music on the net and finding out what all the different music licences mean.

The blogs here are free too.

Enjoy yourselves and share.

I'll cover all kinds of genres here .. even classical music and opera which I find quite difficult to listen to on the whole but I know when I visit some blogs and click in on music they like in a particular genre I can be quite disappointed, even though I can see why they like it, because it's not quite what I was looking for.

24 hours later

2010-05-17T15:47:00.000-07:00

Back from the hospital .. wasn't there too long this time. Passed out early this morning and had trouble getting my meds down later on and couldn't move very well .. so off to the hospital again.

I was there a few hours and started to feel a bit better and after having some tests done came back here .... with, yes, another pack of pills.

Being there meant I couldn't take care of the other problem .. but, it does seem to be a bit better and while one day might set things back a little doubt it will be for long .. and I did get the relevant pill down roughly within time.

I have slept some today .. quite soon after I passed out .. about six hours sleep .. or maybe more .. could well be a couple more I guess and been dozing kind of very lightly on and off quite soon after I got back. Suppose I should soon get myself to chair though .. if I do don't think I'm going to sleep though. Wish that lady had said more about her sleeping patterns like how many days she goes without sleeping reckon it might be a bit longer than I do. Sleepless nights seem to affect a lot of people with this illness and it appears to be more than pain that causes the problem as it can just be the way that the illness affects the way you sleep.

Don't think I'll have any trouble not sleeping tonight anyway ... sp might as well stay up .. don't know if it's better to turn the light off and try to rest or stay up doing something that'll occupy me. Maybe with the extra problems I have right now it'd be better to stay focused on something ... probably ease off after a couple of days.

Still might doze a bit .. you never know.

A breath of fresh air

2010-05-16T10:06:00.000-07:00

I would've liked to go for a little walk today .. just down to the bridge and back but didn't really feel up to it. Would be nice to be out in the fresh air more though. Perhaps I should take a leaf out of Doll and Charlie's book and sit out in the front garden. They used to be almost a landmark here after Doll lost her legs when she developed infections in them and eventually started sitting out the front to watch the world go by with Charlie. They used to have a stall down the market like a lot of their family. Fruit and veggies.

Doll was amazing, and, even after losing both of her legs, used to do loads round the house including making the bed. Don't ask me how she did it. But she was a strong woman in all ways I guess. Didn't think I would find myself here .. like her "a bit" under the weather!!

How time flies, eh. This bit of the street has changed so much since I first moved in. Lost one of my best friends, June, who lived three doors down, to breast cancer when she was about my age. It was through that that I eventually went to help out at the hospice shop for a while. Which was a lot of fun though very hard work as it was a large shop .. nothing like the small one they have there now. Worked a bit on the till but it was usually Robert and Phyllis out front while I sorted out at the back often with Marieka and Sandra. Sky, my dog, was out front with the customers .. there were treats at the desk sometimes .. lol and out the back too.

Guess he kinda fitted in there being a second hand dog himself coming from Battersea Dogs Home.

It's absolutely pouring out there now .. so not even a potter out past the gate.

Saturday night/Sunday morning

2010-05-15T17:38:00.000-07:00

Don't feel tired again .. guess I can sleep when I feel like it though. One lady who has this illness said she just goes on til she more or less collapses with exhaustion and into sleep. Maybe will go and make a cup of tea and put some relaxing music on then.

Think the pills are helping .. know it didn't look as if they could possibly be earlier on but I think they may be. I've finished the ones I was taking before I went to the hospital on Friday now. I'd taken an old one and one of the new ones yesterday to finish the first packet .. they are a bit different so they're not doing exactly the same job as each other. Did the same today and now I'm just left with the new ones.

See how it goes. This evening looks promising though. The test results should be back on Monday so they'll know more about it then. If things appear to be getting worse when the effects of having both pills wears off will tell them. It should only be an extra pill for a little while not as if I'm adding more to the daily list.

Well, think I'll go and get a cup of tea and a sandwich. Mouthwash time again. It's better than the one I had before .. the Difflam spray ... because I can numb the whole mouth and with the Difflam spray you just get a very little directed at one spot. Started this one in hospital last time I was in .. was a bit dubious before I tried it but it helps, though if the pain's very sharp, it can still break through. It makes eating a lot easier all in all though.

The pills are helping but my skin isn't doing too well really .. my elbow is so sore where I rest on it .. and I still haven't got those cushions sorted out .. I think they're a bit like giant doughnuts but I could be wrong. Dunno where I got that idea from .. maybe the physios brought one on to the ward to show someone or something .. or maybe I'm thinking of something else altogether or maybe someone told me about them.

I was offered a hospital bed too .. you know the sort that you can raise the top end with a remote control so that I could get up easier in the mornings .. or whenever ... lol!!! Also I'd've had an air mattress for skin and back. I find it easier to sleep in a chair just snuggled up in a duvet. Duvet and pillows for warmth and support .. they keep my back and head away from surface pressure too .. not that it's making any difference. Still a bit of a haul in the mornings but would be worse if I had to get out of a bed even with the extra help..

Guess I should've played some relaxing music too .. might've drifted off. Might not've.

Hmmmm

2010-05-15T07:52:00.000-07:00

Biscuit in one hand .. well, breakfast biscuit.

And people who I contacted .. he's just left a message and will bring the other cream round later .. there'd been a bit of confusion about it earlier on but it's sorted. I thought he was about to arrive now but it'll have to be later on. Anything that might make this a bit easier than it was this morning would be so welcomed.

Brings back memories of the guy who used to sell papers with his wife in the little wooden shack outside Brixton tube. Only a slight connection because he had cancer but seeing myself over the past couple of days reminded me of him. He was very brave. Think it was the first time I'd seen an illness like that.

Morning .. afternoon

2010-05-15T02:26:00.000-07:00

A lovely day .. well, looks it anyway and I did just go out for a couple of minutes earlier on to test .. lol. A woman said at the hospital that it's meant to be a nice weekend. Well ... it is so far and let's hope it lasts.

Real time .. around 10.30 in the morning ....

So, still a while to go ..

Whoops time has gone past rather quickly ... it's 1.03pm now and I haven't done much except sorting myself out etc medically. Took ages this morning and I got through more of one of my new creams than I should have I think. Not the corticosteroid one though used a little of that last night where there'd been a bit of trouble on my nose and it has calmed it down.

Will stop here as I've just numbed my mouth and it's time for pills, a drink and something to eat. Have drunk today but not eaten much so I guess I better mix up a protein drink to take the place of the food. Should have asked for some Fortesips yesterday at the hospital I suppose .. a liquid meal in a little bottle with a straw.

Friday or Saturday

2010-05-14T22:18:00.000-07:00

I know it's been like it for years and it's just part of the blogs now .. but the time .. Friday or Saturday?

The last post here is timed 7.30 or so on Friday evening which would be impossible as people will have realised if they've been reading the blog during the late evening and night as they'll have gone to bed before it appeared .. this is because Blogger isn't British and it's default time isn't timed to the UK and I haven't bothered to change it. Don't know just where they time the blogs to but I'll go and have a look

Ah .. I'm twinning with a few places including Vancouver and Tijuana.

It's now Saturday ... 6.20am .. though when it says draft autosaved that gives the right time on the type pad.

Shows the difference

BBC page last updated 00.29 Saturday, 15th May.

http://news.bbc.co.uk/1/hi/technology/8684110.stm

My blog still says it's Friday 10.18pm .. just the way Blogger defaults the time setting.

Maybe I'll change it when the clocks change or maybe it should just stay as it it is

and boards

2010-05-14T19:37:00.000-07:00

The guy's in therapy and, though I haven't read everything he's written .. his posts are scattered all over .. he's explained a lot. I understand though that people aren't clones of each other but it still gives an interesting base line.

I said that people are very open about their feelings there which is cool. Some come and go after a problem has been talked over a bit or just make one post and, I guess, read what other people write to see if they can get any help from what's been said but don't join in the discussion. Most others stay around a while.

I've still got a few forums to read there .. and I will read through the whole board. Just read my way through all the forums that caught my attention when I first found the board.

I guess most boards have their relationships forums .. this one just suits me .. other people might find it a bit daunting. Just found another one that looks interesting .. though, on first view. maybe not so chatty but might just have clicked a couple of links where there wasn't much more to add.

Guess, though, that it's different strokes for different folks or everyone would be on the same site!!!!!!!!!!!

Won't put links up because the first community is quite a closed one but there are hundreds if not thousands of places where you can go to discuss your problems though it's a given more or less that you don't tell anyone IRL where you are for obvious reasons. Well, not unless you know you can trust them and, even then, it seems most people like to have their space to themselves. Some people make subtle changes that don't alter the gist of what they're saying but still make it less likely that someone they know will recognise them. Some people don't bother.

I miss the big UK board as it was. Guess people have decided not to come back to stay. I think it might be the delay in posting for new people or people who haven't been around for a while that caused the mass exodus. It is a bit annoying to have to wait hours for what you've written to appear on a thread but I guess the site thinks this is the best way to run the board. Earlier rather than later monitoring. You have to join to post there but it's not private or semi private.

I might try and search for somewhere where they have pain relief discussions I find it easy to relate to . Pain's not good but not too intrusive at the moment. Has it's moments but over all not as bad as it was .. and I mean generally. Couldn't walk that far but it's OK just like this most of the time right now. Well, maybe most people wouldn't agree but. for me. this isn't too bad at all so I'm making the most of it. Still finding it difficult to sleep though. People who live with this sort of thing will know the feeling. Don't think it's easy to imagine if you don't. Well, it's not.

Wonder how they're getting on with that new form of relief I mentioned months ago .. hope all's going well.

On the boards

2010-05-14T17:54:00.000-07:00

I seriously love one of the boards I visit. I've learnt so much since I've been reading .. generally the relationships forum .. it's brought to life some things that I only knew through studying .. but had never heard people, or a person in this case, describe exactly how they respond to people and situations when they have this problem.

I don't know if it's still uncertain if this happens completely by nurture or nature .. if people are born like this even or if early experiences change the way they develop. Like the way epigenetics showed that events before birth could affect people in their lives.

This guy didn't want to be like his father who treated him appallingly so he is trying, with the help of a therapist, to change the way he reacts to people and events.

He's not bullshitting either.

Hope he stays on the board but I guess it's possible he might move on. Whatever, he's put into words something that I hadn't heard described like this before.

Gudnight

2010-05-14T17:13:00.000-07:00

It's an absolutely gorgeous night out there .. so mild that there are people sitting out past one o'clock in the morning. A nice sort of ambience in the air too .. don't know if it's just a kind of stillness in the air that makes it feel like that .. but it's so nice. It's not just night time and the moon cause it doesn't always feel like this even if it's a warm and dry. Beautiful out there at the moment though.

I guess I don't feel too bad .. in some ways .. maybe it's just the chilled atmosphere .. but I'm OK. Certainly don't look as if I should and the illness is letting me know that it's there though guess the pain's not too bad tonight.

Thinking about pain I wonder if I could use the numbing mouthwash on my lips while this is going on while I'm sorting out the creams etc. Will ask on that one .. might interfere with something I guess.

Anyway .. whatever .. guess it's all going to be much of a muchness for a few weeks .. some of it might be down to the mega reduction in Cellcept .. might've just provided a weakeness there. It'll be at least another five weeks before the Cellcept's really working at the strength I'm taking it again. Bit like some anti depressants I think.

Just guess things will toddle on as they are for a while. I've had one test done at the hospital .. maybe that might show something that can speed things up with a change of meds. Just have to wait and see.

As I said will say if anything new happens .. otherwise take it that things are much the same. Took some pills, blah, blah, blah ..........................

Goodnight.

Afternoon out

2010-05-14T14:31:00.000-07:00

Don't think I've been back to St Thomas- since I was an in patient there .. usually go to Guys which is very near by and connected closely to St Thomas'. Didn't feel at all bad being there and people were cool. Most people looked quite well which just goes to show you that you just don't know,

Went quite late in the afternoon .. had to be fitted in after ward rounds etc but managed to get to the pharmacy before it shut for the day. Otherwise you have to take the prescription to your GP and get another one done for the local chemist. The hospital ones are like A4 sheets of paper.

Didn't mind being there a bit .. well, obviously it certainly had it's good points .. but was really comfortable there. Probably because I felt reasonably confident about my own view of what was going on.

I know someone who's married to a radiographer who put me in the picture about one or two things and made me feel more grounded .. probably not the right word .. about the present situation. Not sure if I really wanted to know but, on the other hand, glad that I do. It changes things a lot and I most certainly have a voice now.!!!

It's not good but at least it gives me leverage. Best way to look at it cause we can't go backwards in time.

And J you can give the other updates .. talk to you later.